Miss Fairy's Waffle

Grievance - part two

2009-04-14T09:00:00.000-07:00

So, the reply went a bit like this - on the adjustments needed for work, a list was sent and I was aksed - is this what you would recommend we do? BUT, in order for us to proceed, we need a report from your GP (the one who said - give up your job, I wouldn't accommodate you), as we don't have a list of what is required. Therefore this is a 'medical basis' for you being off, and can you send sick notes. So, I spent all morning on the phone and the result of that is I sent back a reply that says this

Dear HR

The last sick note that I sent I believe ran out on Fri 10th of April. It is therefore my opinion that this issue in particular has a more urgent nature, and as such I have made further enquiries as to the legitimacy ofbeing asked to provide medical certificates in these circumstances. I would like to ask if you could also confirm that the time that the time during which sick notes have been used are not part of sick leave, as was my understanding in the grievance meeting.

I have discussed the situation with ACAS and the Equality and Human Rights helpline who are at a loss as to why I would need to supply sick notes,particularly as it is asking a doctor to verify I am unfit when I am not,and would they be willing for this evidence to be used, eg. in a tribunal situation. On their advice, I also contacted Magic Union Rep Man who suggested I make an appeal. I am asking that this email be counted as appealing against thedecision made regarding point 1, in the grievance procedure. Please couldyou advise of the procedure now, and pass this email to any relevant bodies?

I would suggest that to ask a dr to ask to say I am unfit to work when I am not, is potentially fraudulent, and that the grounds for medical suspension are already established by the fact I have a definable disability. If I were blind, and I had to wait for a doctors report to verify I needed equipment at work, would I need to supply sick notes to verify my continuing blindness? Thank you for your assistance.

Signed, Me.

Many thanks to the union man who called me even though he's on holiday, and to the bank who paid me compensation for messing up my address and making impossible to pay council tax and making me wonder how on earth I am going to get a week when I am not fighting an authority on the phone over some kinda weird thing.

I also bake, make soup, write my book and make cards - coz I'm that kinda political activist - the one who'd rather be writing recipes than grievance appeals.

Post grievance fatigue

2009-03-31T06:49:00.000-07:00

Today was the grievance.

Me, pregrievance has been a low, low time. I've been exhausted, and crying lots. That's a vicious circle when you are trying to stall well/better - my confidence has been shattered by having to fight so hard for a job, with the constant medical opinion of - please give up now. I have also collapsed an awful lot recently - making the whole are you well enough to work, a bit shaky to argue.

There was me, my union rep and the head head honcho of HR, who was actually very nice. They'd made sure I had a toilet I could use, and wore no aftershave, and made sure the meeting was well explained and ran to time. Two and a half hours, with a break.

On the issue of why am I having to supply sick notes when I am not signed off as unfit to work, I am signed off as 'I'm giving you a note because I have been told to,' they are going to take legal advice to see if that needs to continue. One doctor so far, said, I can't give you a sick note for being told I have to. The HR man said he was deciding there and then that it would not affect the amount of sick leave I'd used up.

On the issue of allergies he said, I see no problem asking people to not wear perfume or aftershave, but it can't be enforced. I think if people sprayed stuff it would be dealt with more severely. He said he would speak to the management to discuss it. I asked if I could also be given an air filter for my desk; I think that may be considered. We discussed at length ways in which the message of my allergies could be communicated.

On the issue of collapsing at work - we discussed how that was to be managed, re first aider's etc. I have to admit recently this has been a harder issue to manage - it's not always triggered by allergic reactions.We discussed the issue of ME and it's effects at length - and the run up and history.

On the issue of the induction process there was much agreement that my induction was handled poorly, that the health issues could have been dealt with more promptly and that much of this is lack of communication. The fire drill stuff should have been well sorted earlier. Yes, they will take lessons learnt from this and apply them. they thanked me for offering anything I had said to be used in diversity training to help people understand hidden disabilities - tricky to do that without identifiying you, but good point, thanks for raising it.

A Happy Disability Story

2009-03-12T02:38:00.000-07:00

I love swimming. Water is the only area in which I am on a relative level pegging. I don't know why - but the collapsing is controllabe in the water. Even so, I always, always have a float with me, because that is way safer. It also means I use my muscles but don't overuse them. I can even have a bounce in the water - something I cannot cannot do normally. My best ceilidh for me would happen in a big pool.

So, J and I are doing the swimming pool testing now. There is a nearbyish pool that is small and warmish - but has changing facilities up the stairs - not good. We got sent to other chaging rooms, but they were ground floor ones for the gym, so it was a bit, urm er, don't mind me.

There is a bigger pool a bit further away - so we went there - good ground floor changing facilities. Get in pool. Had forgotten float, so wore armbands instead. Start to swim. A lady calls me over - you can't swim the whole length of the pool. Why? Because you have arm bands on.
So, I explain, I'm disabled , it's the only exercise I can do. We chat -the pool is not much deeper in the area I can't go into, but I am allowed to swim half the pool. They have a lady with epilepsy in the same position - she wears arm bands (then let her be my friend! We can be arm band buddies!).

The lady attendant thinks the rule is crap. Would I like to see the manager? Yes please. I smile lots and lots at the manager, and I explain I know how hard health and safety is, I just wanted to pass on my thoughts. He says, well maybe we could assess you later and consider you on your condition as being ok.

So, I am very good, and me and J swim half lengths. The lady calls me over. Look she says - you can use this long float (it goes under the arms, if you drop that, your goosed. Arm bands are safer), or this training float you strap round your waist. I say, yes please, yes please, and strap the float round my waist. She will look after my arm bands for me.

The new float is BLISS. Enough bouyancy (less than the armbands, but hey, not an arguement I can be bothered having), and enough resistance in the water to make the swim fun. It feels safe, and it means I am allowed to do lengths - which I do, and race J; an absolute luxury.

We finish and get ready to leave. The lady says - would you like to keep the float, I found it in a cupboard, and it would serve the dragons right. We thank the lady lots and lots, and scarper. A strap on float is safer than holding a float, and I am like hee, hee, hee - that felt naughty.

The Sick Note

2009-03-12T02:23:00.000-07:00

Ok, here is where we are at. I work in an office of around 40 people. I would accept if they said that under their duty of care they would be concerned that even with no perfume or aftershave it would be difficult to guarantee my safety.

I would say - well here are the potential solutions
1. Use an air filter on the desk.
2. Put me into a smaller office and see if that environment can be controlled.
3. Let me work at home.

I do not accept whatsoever that you can't ask people not to spray themselves with perfume - it's not logical - you can ask them to not eat nuts if it's harm someone else. I do accept even with that I could be ill - it's a tricky one, because health matters over principle. Now, the other problem is in the background I am iller that I was 6 mnths ago, and am collapsing more regularly. So last night went to see GP, who said he was sorry I'd been told by another GP I'd be reinvestigated and then made no action. He told me I am most likely to lose my job. I am stuck as I know I may not be well enough to work, as I am collapsing more regularly - but believe that with some mobility aid help (walking seat with seat, etc kind of help), I can get to work. That if the environment did not make me ill - I would be ok on reduced hours.

Good things he said
1. We will test your cortisol levels.
2. We will do a tilt table test.
3. He did not flinch when I said my husband and I had to use wheelchairs in supermarket as I collapse regularly.
4. He accepted that I had had a relapse.
5. I can get an OT appointment.

V concerning things he said
1. He absolutely would not ask his staff not to wear perfume.
2. If he was anapyhlactically allergic to peanuts he would not ask his staff not to eat them (or vice versa for his staff).
3. You cannot be allergic to an airborne allergy.
4. Asking people to not wear perfume is NOT a reasonable adjustment and does not consider other people's rights.

I explained I knew of a child who attended a school where people did not bring in tuna sandwiches as it would give him anaphylaxis - he said, you don't want to know my opinion about that.
My speech was slurred and I was so tired - not v convincing that I am well enough to work, I asked him - am I fit enough, and he said I am giving you a sick note because you asked me to - I am signed off with 'falls, exhaustion, etc.' Seriously.

If I really am not able to work healthwise - ok, but not if it's a case of - well that sounds too tricky. I collapse about once a week, doing activities that I wouldn't do at work - like prolonged walking or standing.. I am fighting this as fast as I can. I believe instructions needed to be clarified in writing to remind people. Then action taken if they were ignored. My grievance hearing is 31st March.

Came out of room, went into corridor, and collapsed. Husband with me - dr not. Would have saved the whole trying to describe what they are like stuff. 'I'm asking you in case I spot a pattern.' V good Dr - the pattern is this - exhaustion, emotion and certain actions that affect my concentration. Dr told me I might need to accept the fact I am disabled. Um, yes I am - and much as you are a Dr you are not an expert on disability law. He did clarify it was just his opinion - an opinon he might have been better to keep in his head - that basically went - well I would not accommodate your disability, but you know, there there, this was a hard discussion wasn't it?

I do not know what to fight at the moment. Drs seem quite content on deciding what a disability adjustment is even before it is discussed - and I am now having to prove I am well enough to work at all. Please just stay at home - never mind the loss of income. Just don't try - there is no way round this.

My managers - 3 of them, plus a senior said - you are really really good at your job, we do not want to lose you - we believe we can accommodate you.

The flip side of this is - even with resting and accupuncture and graded activity - I am very exhausted. I'd like to have a family - I wouldn't want to do anything that puts that in jeapordy.

I spend a lot of time sharing intimate details with adults who are paid to be Helpers - so they haven't a clue what to do with someone who wants to fight and get better and do things - and they have no idea the effect they have with their -Oh it's just my opinion.

Eeny, meeny, miny, mo

2009-03-05T01:20:00.000-08:00

This post is not meant to sound bitter. But if it sounds p*****d off then that's ok.

This cartoon sums up so much. Things I could do today

1. Sort out mess WTC left me in. I have their money, it's hard to calculate what I owe them especially when they send me two letters, same info, different financial outcome. Which calculation of yours would you like me to put into mine?

2. Phone hotel for a party we are all having and explain allergies, and sensitivity to strobe in disco just in case.

3. Phone cleaners again to say - well, the stairs were not cleaned with water, as you suggested, but pine cleaner again. That one was a bitter remark; they have not done that yet, it's just a knee jerk reaction from last time.

4. Phone equality and human rights people, and union rep, and access to work - and discuss potential impending action as I refuse to send sick lines, and I suspect, prepare to fight for job.

5. Phone nurse who said she would give us an appointment for nurse again, and ask when it is, as we think it's this week.

Number four is the priority. Now, I have had lots of time recently, but most of it was spent recovering from a relapse. I have ME, my concentration is often very poor, and I have learnt how to hide it. I want to tell all the doctors, etc, sometimes the effort it takes to have long, boring nonsensical conversations about what I need, and oh, yes it is complicated. I have files of stuff ready for each organisation I deal with. Get sick, and you get a free part time job called - file it, keep it, be prepared to write about it regularly. And have good phone skills.

I am not actually a good self advocate - by which I mean, I'd rather hide in a cave sometimes than confront people. I also have intermittent collapsing that is made worse by tiredness, and other triggers, and that just spices up the whole mix.

I want a life of NOT having to say guess who I am fighting now?

Next week, J and I go to see a GP to discuss why the last GP I saw said - your case is very interesting, I am going to talk to all the other doctors, and read all your files and see if we can do anything else - why are you collapsing like this. She left the surgery two weeks later, and left no note in my file to state her intentions. I had this from the asthma test guy - I will contact the allergy specialist to discuss your medications. So, to hear again - I will help, oh, no I won't - hurt.

Allergy, work and a plethora of advice and a grievance

2009-03-04T08:11:00.000-08:00

Ok, it has taken till Feb to get OH appointment. The doctor was the one I saw in Sept. ALL the medical notes are missing. She almost said sorry. I took MIL in as witness. We discussed the number of times being sent home, etc, and she said - I will write and ask that you be in an environment where there is no perfume and aftershave. I will also suggest a phased return as you have relapsed.

Her report says she is concerned about me being able to work long term. Relapse aside - I could work part time in an environment where people do not wear perfume or aftershave, and I was kept away from a couple of other triggers - this is not impossible. Now, I get told, ok until the environment is made safe - you are coming off medical suspension, and now you are off sick. How, I asked the HR dept, am I to get a doctor to sign me off - the OH have said I am fit as long as the environment is changed and the return is phased. She said she would be interested to see what the GP wrote.

Spoke to ACAS who said - write back and say - I cannot provide sick notes as I am fit to work. So I did. Eek.

I spoke to a legal team and they said, raise a grievance. So I am. Eeek.

I had asked HR if I was in a wheelchair and they couldn't fix a ramp so I was sent home, would I need to send in sick lines, and they said - we will not answer that. Your case is being judged on its merits.I am doing all this in my pyjamas. I'm just a little lady. I had the phone put down on me, because I said - I am angry. Apparently, that is abuse.

I'm running out of chains of command.

Told ACAS, do you want a laugh? I said my allergy doctor had said - I think you should stay at home and be a housewife. I said, I had to tell all my principles I was taking them home in a bag, as I'd run out of fight after an hour of chat.

Actually, what she said was this - go home, and get pregnant. Potentially more positive than the nurse who said -'How will you cope if you have a baby!?', and yes, it is good to hear that if I was pregnant then it might help my immune system even if temporarily. Apparently, according to this nurse (the only disabled pre-pregnancy nurse I've heard of), I do not have God's right to ask people to not wear perfume, and I full of imaginary mummy boldness said - yes I do.

However, apparently three years of management can be reduced to this - oh, well, never mind, chain yourself to the sink, for goodness sake. No pressure of course, on a couple who would very much like children but do not hold a holy grail in fertility promises.

Thank you homeopathic hospital and acupuncture man. Five sessions with needles (cost £140) and I am no longer requiring 13 hours sleep. The homeopathic Dr said - I can hear this is such a struggle, I know it was hard for you even to get in today for this appointment, I will treat you in my allergy clinic, and I have seen multi sensitive people improve. Thank you everyone who made the wedding so much fun, and possible, and with wheelchair assistance when I was biting my hand to stop clunking over.

The best image that stays with me yet, is arriving at my sisters house, before Christmas and she is cleaning her toilet with scent free baby wipes, and drinking wine. Ingenious, and the best perfume free inventive adjustment I saw all that season.

They asked for it back : (.

2008-12-21T15:05:00.000-08:00

Well WTC caught up with me - they want the money back. Darn. I was looking after it so nicely. And they sent a complicated letter that means that somehow I owe them even more money than that back. Well, how much will I miss all this when it stops - we are practically family now - could've set up a fab wee investment agreement. A kind of I can guard your cash if you like agreeement.

Allergy 3.

2008-12-21T15:03:00.000-08:00

Phoned Human and Equality Rights people and there is no definition of what is a reasonable adjustment at work but if you disagree, go through the internal compliants procedure, and if not satisfied an employment tribunal. So, here is what has been happening. I had a further meeting with my manager, and went through again the adjustments I would like to try. I think I have done this five times now. It's taken three months to get the air freshener out of the toilet. The meetings are exhausting. Would I try moving desk - not till I see Occu Health first. Also, had to explain to my embarrassment that the open cupboards at one of the team sections smells of pine also makes me ill, and that actually where I am is not as bad as perfume plus pine furniture.

Then I walked back to my desk, to find that the men had sprayed body spray in the toilets, and I had to get sent home.More chat, more meetings. Now a poster in the toilets asking people to refrain from spraying perfume. Last week, a risk assesment manager comes to chat (where has he been - I've never seen him before!). He tells me - well we can't ask people not to wear perfume or aftershave. So I go through again what affect that is having. One hour later, I look at my work colleagues who look at me going sleepy, and they say - 'we can smell it.'

A cleaner had opened up a bottle of disinfectant. By the time I got out the room I was unable to walk properly. I was attended to by a first aider wearing strong perfume, and sent home in a taxi smelling of incense. I had a rash across my chest, and called NHS 24 who said - if it gets worse call an ambulance.So, major ME relapse, and then a very odd phone call. A senior manager explaining I am on full pay, but have been asked not to go to work until this is sorted as they have a duty of care to me, and want to make things better before I come back.My head was buzzing - I was like, ok, but I would like to talk to my union about it. I have slept about 13 hours every night since that last reaction, I felt like a bus had hit me.

Is there anyone, anyone at all out there who has been through anything like this? I feel isolated and scared. I see OH on tue - the original appt was in a place only accessible by car which would have cost loads in a taxi, and now is in a place I can get to by taxi that I can afford.

Eternity

2008-12-07T03:31:00.000-08:00

I have been ill for about eighteen years. Sometimes I’ve lost count how long it is – and no matter that I’ve had half a lifetimes practice; it does not stop me waking, shocked every morning.

I lie there, and think – seriously, am I not better yet? An eternity of flu – an eternity of waking up thinking, I’m sure sleep is meant to be refreshing, and that it’s not normal to feel like several days and nights have passed without it. The singing of a nervous system that has who knows what wrong with it, sends a constant buzz around my ears and down to my fingertips. There are pressure points all around my skull, and my limbs, and my back, and my legs that all take turn to ache, or burn or just niggle away. Once they get massaged, I am astonished just how much pain there is in the depths of my muscles – all the time. Maybe today my head will hurt, or I will get muscle twitches after walking short distances, or muscle spasms in my hands after more strenuous activity. It’s winter now – so my teeth hurt a lot it seems to be a sinus thing, triggered by allergy, or infection or both. My head feels taken over – there is a solid lump of not me in there.

It’s like a grey metal cloud that lives at the front of my head. It makes me dizzy sometimes. It eats up the energy it takes to sit up, or stand up. I never stand without having to concentrate, and sometimes very hard just to keep my legs straight. Worst case scenario – once my speech slurs, and the wobblies hit, I hit the ground very fast, with eyes shut, ears open, but with a slip of time missing. I know I’m going to collapse just before it happens. Just. Sometimes at the point my legs melt. Then there is a blank bit, and then I am on the ground. That bloody ground – it knows how to catch you, but not very well. It’s like a stupid flat thing just rushing up to you, as your muscles do nothing, so you end up like a floppy girl sucked into gravity’s magnet.

Not the best for not alarming people. On the floor, is actually not too bad; that is if you excuse the firmness of concrete, or the nip ping of gravel in your knee.

I have a body clock that is screwed. My mood is tempered by whatever is going on in my immune system/hormones/energy now. It’s got its own pattern – if I get too low, chances are I’m knackered. If I get a bit high, and giggly; chances are I am knackered, and up for a round of increasing insomnia – known in ME land as – I’m wired to the moon tonight, and too tired to sleep, and yes it looks like I’m better, but actually my brain is acting like a kid on coffee – tomorrow you know there will be tears. And possibly a solid night requiring twelve hours sleep. Or a broken night. Or a long night followed by something like lunch, and then more sleep, and another day missing from the calendar.

I never ever ever feel well. Not free to walk, or run or dance, or not measure how much I’ve done well. Not actually no pain all day well.

I am shocked when I wake up. Is this not going to stop then? Yes; I had IBS, and now I don’t – progress, fab. Yes; I stopped having migraines after changing my diet for the third radical time. Yes; I used to be unable to work, and I’ve worked part time. But not once has the rabbit eating the middle of my brain with its eternal appetite stopped.

I was asked recently, before prayer for healing; what is it that bothers you about this the most.
I replied, that I hated not being myself. Me, well, would have been a disaster relief nurse who worked in war zones. Or a teacher (I had a place in college for four years held open; they really really wanted me). Or a manager full time. Or just me.

Not somebody who has to say – oh flickering lights; don’t mind me I’ll cover my eyes, so I don’t clunk over. I would eat everything – and not just once. I’d cook and write recipes, and be adventurous. Not; excuse me as I turn down many social occasions with increasing allergies.

Careful? F**k careful. I hate not being spontaneous to the point of actually even being able to run for a bus. I hate having to talk, and debate, and negotiate and consider. I fear being like the ill person in the media. They are the tiresome ones, the wheezers, the easily portayed. The moaners. They – oh do be careful with me – I might snap.

I hate having to say that – actually an astonishing amount of everyday life is too much. Too cold, too draining, too blocked off.

I would love to wake up, and have the luxury of saying – I can’t be a***ed going to the gym, when actually if I wanted to I could ceilidh myself into a stupor and it would not matter. It would not end up in – you’ll never guess what kind of relapse I had then, eh?

Allergy 2.

2008-11-30T06:12:00.000-08:00

Here are some of the issues - I was told by an allergy nurse, I was not covered under the DDA. Thankfully, my work don't think like that - however during the medical, I made my allergies clear. The stuff I'm allergic to however - is what people wear, everyday. So, whose rights win - can a workplace say - well, we can ask people not to wear scent, but they have a right to say no?I can see both sides of the issue - I really can. I can understand people get offended. I am fully aware - it can't be controlled because everything is perfumed these days. I know - I get on a bus, and I wear a big scarf so I don't feel ill;everywhere I go I can get ill simply by breathing. But, there are workplaces in America and Canada who have gone perfume free, totally. Partly so they don't get sued.

Anyone with asthma, migraine, MCS, fibro, etc could also be made ill. I am aware every meeting I have, of just how much I want to challenge people's thinking, not just on the allergy issue. On, why when I asked for what I needed after the first collapse, it took weeks for action to happen - then we had collapses 2 and 3. I think about how I should not have had to chase up my own PEEP. And how scared I am - I am scared to listen to lots of people discuss solutions, and that I may have to try them to make them feel better; or maybe that is the gracious thing to do, that it will make people think,and come uo with viable solutions. That I worry I will take any solution they offer - even if it means giving out a poor message about how disabled people would like to be fully accommodated, not be made sicker by the workplace, and not treated like a social pariah for needing an adaptive environment. i.e. the how about we put you in a desk away from everyone else solution.

I want to advocate for me - but I don't want to say things that make it harder for other people in the future. And preferably without pissing people off. Yes, the whole cake and eat it scenario. The thing that really struck the heart of fear in me was - well, we will have to consult with our experts. What experts?

Allergy and the DDA

2008-11-27T15:06:00.000-08:00

This post also posted on Ouch website - if you know anyone else in same position, I would so appreciate them getting in contact. I have a splitting head, and the shakes again, and I've already had to take time off recently as a result of so many reactions.

Feeling pretty low right now. I have already met with the union and the managers where I work, as I work in an office, and I am allergic to perfume/aftershave, pine, cinnamon and citrus oils. You would not believe the hidden dangers in an office. The cleaning lady who sprayed all the desks - I collapse, and get sent home in a taxi. Then, the perfume sprayed in the toilets - I get sent home, and boyfriend finds me outside the front door nearly collapsing and vomiting, and I go home in a taxi. Then the cleaner who didn't know my manager had told all the cleaners not to clean till I'd left, sprayed the desks again. Mild nausea and tiredness. Phew.

I have had so many meetings and everyone got told - don't spray stuff in the office. So, when a guy whips out a can of lemon cleaner and cleans his computer screen today, I ask my colleague to ask him to stop. So the guy sprays more, and in desperation I go over and say, please don't, I'm allergic to that (not a good move, but I was feeling desperate).
So, I get wheeled out this time by a first aider, so I don't collapse, and they call my fiance and he takes me home -in a taxi the work have paid for (a small triumph), but emergency contact or not - fetching him could be a bit awkward, what with it taking three months and still we have not even got the basics of - if you spray in this office, then fairysparkle will have to go home, and may end up going in an ambulance, not a taxi.
It's mentally draining - is anyone else out there had to tackle anything like this. It is very very hard going in everyday - I've never been so allergic in my life, and it takes hours to recover.

Very Clever People

2008-11-25T14:27:00.000-08:00

Dear Working Tax Credit

I work next to two very nice people. They are called C and D. They rock. They make me laugh. They have little chats with me, and they say, oh, yes, this is how you do this and that. They are kind. They are a bit loony. They are clever.

So, from now on, I am going to no longer phone you to find out what is going to happen to the X thousand pounds you put in my account, despite nearly doing it once, and then realising you shouldn't have, before then doing it for real. I am not due any of it.

C and D said - get that money into a high interest account now. So, I moved it, and am open to sugestion if there is any better account I could use instant access. So, feel free to take months to decide what to do. Heck, take a year - I told you if you didn't get it back by april I'd spend it. Well, maybe I won't- maybe I'll invest it.

You loonies. Feel free to make the same mistake again.

Work; how to have healthy relationships.

2008-11-25T04:12:00.000-08:00

Here is a massive hint;

If someone phones you at work and asks to speak to the union rep, and you don't know where they are, and you offer to help, and the caller says, I really need to speak to a union rep, and I don't want to discuss my situation as it's a health matter - it may not be in you best interests to

a) speak to your colleague within earshot of the phone, and say - what a bitch that caller is.
b) then discuss word for word everything you have discussed with the caller with your colleague.
c) do nothing about the enquiry.
d) when you get back on the phone and you speak to the caller again who asks for your name, and your managers name, and then pretend to transfer the caller, but then not really.

Well, if that's what you would do - then at least try and work somewhere where they have no dignity at work policy, or an HR department who would go ballistic to hear one of the staff is not clever enough to say bad things without putting the caller on hold first.

Thanks to Elizabeth, J and J and M, who are at the forefront of my mind, as I pretend they are sitting next to me, as I have to gather up my shaky self, and then speak to the union regarding the matter I neede to discuss in the first place, preferably without - what a bitch you are stuff in between.

Allergy 1.

2008-11-20T12:56:00.000-08:00

So, turns out the slightly misleading advice that I am allergic to anything that has a smell, given via the phone from a nurse, ain’t that far off from the truth.

I love the smell of stones. A smooth smell; grey and granitey and does not make me sick. And the sea; salt and fresh. And nothing; I love the smell of nothing.

Everyday is a rollercoaster.

Perfume, hairspray, aftershave, deodorant, fabric conditioner, etc – all the things people use day to day make me feel nauseous, light headed, spacey. A little whiff, and I start to feel sick. I can go from articulate to unable to type, spell, think, move. Sometimes I get sleepy, very sleepy, now gonna collapse sleepy. A bit stronger (that means if I stand in an average crowded room as opposed to next to one person one to one who doesn’t wear much scent), and I feel very sick. A lungful of pine cleaner in a shop, or cinnamon and I start to throw up. I feel drugged. I feel weak. I get weepy, or irritated. Conversely, some of these substances have given me insomnia, reversed sleeping patterns or nightmares.

I’m patch tested positively allergic to pine. I am allergic to balsams and perfume. Allergy pine can mean allergy to cinnamon, citrus oils, chilli, etc.

After a years wait (everything in the allergy world happens after a years wait) I saw another doctor who said – ok, your allergic, but I think you are also intolerant of salicylates. So, that might mean there are foods I am both allergic to and intolerant to. It might also mean – there are foods I am not allergic to, but am intolerant to, and which make me ill anyway.

Salicylates increase histamine in the body. They build up over time – meaning you could eat a bit and be fine, but eat a lot or over several days and you are poorly. They can be ingested or breathed in.

It is a natural substance. So; although I am allergic to perfumes that are artificial, I am also going to react to chemicals in food that are natural. I can say from experience that both make me ill – and I can tell which is which sometimes by the reaction.

Aspirin is salicylate It has taken 17 years, two trips to casualty, many inhalers, several chest x-rays, and 17 winters of getting breathless, plus rather a lot of doctors opinions, and finally one test to confirm I have asthma. The asthma was made worse by taking ibuprofen (salicylate again) daily this year. I don’t feel sick taking it, but my chest gets tight, I feel very weepy, and I get wobblier than usual.

It made me suspect I could be sensitive to salicylates too.

I am allergic to chilli. However, I may be allergic to most other spices too – or maybe I’m intolerant or both. It could help explain why tiny amounts of spice make no difference – but mild to strong spice makes me ill. Now, most herbs have salicylates (parsley and saffron are very low in it). Mint is high in it – and I am not allergic to that, but it makes me feel odd, but I thought an allergy doctor would say – a bit odd is not enough if a reaction for me to be interested.

I have been on a low salicylate diet for a month now and I think they possibly make me feel like I have the flu, make my muscles ache more.

Just for laughs – steroid inhalers and antihistamine tablets seem to make me worse. No matter what the doctors say – if it’s a rare side effect, no, sorry it IS likely I’m going to get it.

A low salicylate diet is low in a lot of fruit and vegetables – but it is easier to say to people a doctor is making me do this, rather than – I think I’m sensitive to food chemicals and my proof of that is instinct and internet research.

It is both a relief to find another possible clue to feeling better – and absolute torture. If I go on a bus (perfume, newspaper ink, cigarette smoke), and then cross the road (traffic fumes; petrol contains perfume), and then go to work (aftershave, photocopying, folders, post it notes, computers) – well for a start most of those contain pine, lemon, or mixed perfumes, and they all make me ill.

It is mentally exhausting avoiding what I can and then having awkward conversations (no, allergic to perfume includes what you are wearing, not just what is on me), and coping with choosing between isolation and health every single day.

I am balancing this with the progress I get with acupuncture, and the various trials of medication that usually end with me going – wow, that was a tiny bit of medicine and I still get wheezy/spacey.
Magnet therapy may be helping – but if I wear them for seven days I get hives, and flu feeling. Maybe the hypoallergenic plasters they come with are not so.

Having a massage is great – but if they burn oils or there is citrus oil in particular in the pillows on the towels you lie on – well, then I feel sick.

Most organic minded stores – use pine, lemon, cumin or cinnamon – and I can’t go inside.

The lengths people go to feed me are so much appreciated. But, if they are wearing any scent at all, then it has just as much effect as eating certain foods but politeness means I often hide my reaction.

A friend kindly gave me a table recently, and sitting in the van with the table, I discovered a van that has been lined with pine internally is a scarf over the mouth home time, gosh couldn’t have prepared for that at all.

I will no longer go to people’s houses that are freshly painted, until the fumes have gone – because it costs me too long in bed. Ditto, being places that are smoky. I want to be as well as possible – and this means having to be more open and honest about the effect these things have.

I will continue the diet till December, mainly at home. If I eat out, then small amounts of salicylate I ignore; but this is why I may not eat as many fruits and vegetables as I used to.

The thing that keeps me going in this partly, is the amusement that it is the NHS that has given me the most controversial diet – even in the alternative world it’s controversial.

Happy for any queries – apologies in advance if my answer is complicated. As soon as I can find a use for all this knowledge; well that would be great : ).

Green Stuff

2008-11-10T03:12:00.000-08:00

It was my birthday in October. It was a day when my dad was not here, or my mum. One of those – I really hope they phone days. The kind that make death very confusing.

Of course they’ve gone. But maybe they could visit.

I got a tree dedicated to Dad. If he’d had his way, he’d have repopulated forests.

His commitment to challenging Green Issues niggles in my mind.

This year, I have started collecting stuff to recycle again. Boxes, and kitchen rolls and cardboard can go to schools and afterschools to turn into junk modelling. Glass can accumulate till I get it to the bottle bank. It’s a mixture of beginning to save stuff and also think more aware.

The next year I think I’ll go greener in choosing an electricity supplier. I have started reading the labels of where my food comes from. I would love to buy food with less packaging. I’ve started thinking about where my clothes are bought – how do I go more ethical, but still afford them?

I asked at Dad’s funeral that people remember his ideals, and make changes. If you have, in any way whatsoever, even a little bit, please can you let me know? I want to have a long-term commitment to changing my lifestyle as far as it can go.

My goal is to start making crafts to sell on the internet that long term would be make from as many recycled materials as possible. The media I like to use are wire, beads, felt, silk and paper. This year I’m learning more silk painting. One day I’d like to make paper from scrap paper by hand. My company will be called Little Fires, and thanks to J, already exists even though I haven’t sold a darned thing. Further details will follow.

Sliding Doors Wish

2008-11-06T03:11:00.000-08:00

I was asked this week if my fiancé J and I had ever had a Sliding Doors moment.

Well, we did. In 1991 I moved to Glasgow and started a degree in nursing. I did not know at that point that the seeds of becoming chronically ill had started. Ditto not knowing the whole several major relationships, moving of houses, getting married, getting divorced, getting homeless, and getting a lifetimes worth of misguided prayer and help along the way, in amongst a glorious backdrop of Good Friends, and Angels and Fantastic Family that have kept me sane/alive/me. You know the whole bit of sand in your oyster to make nitty gritty painful pearls kind of stuff.

In a basement café that served questionable soup, ham rolls, millionaires shortbread, etc (with the kind of compassion wee freshers really need in big bundles of warm-jumpered kindness) I ate my lunch in the Crypt from day one as a student. I met A there – the start of 7 years of confusion, tempered by his walking my path of descending into I’m Very Sick Now, and worsened by his inability to be honest about our future.

I was regularly dressed in loud shirts and wobbly hats. Type of student ; The Loopy One.

Sitting opposite me, maybe in a corner, maybe next to me – my future second husband. The man who makes me feel there is true friendship in the opposite sex; true kindess and true love. A real good bloke.

So, what you do you see is you take a recently divorced woman, who then met Another who said, 'I really love you, marry me, oh right when I said marry me, what I meant was, er, what?' In other words – a woman on the rebound rebound. Take her with her history of five significant boys and her complicated allergies, and wobbly legs (like the hats, but less furry), and then ….ta da da – let her meet J on the internet and get them engaged in 6 months.

Now, add to this that J is fresh on the dating scene, lives at home with his family, and who is bursting with romance – and muddle it up with a little let's get married now stuff, coz life is short and we’re mad about each other.

An alpha and omega couple; my last boyfriend and his first girlfriend. I adore J, and I know he does back. It just makes me smile that as a fix to a broken heart several times over – well this is the kind of scenario to make the hair go white in terms of sensibility.

We undergo marriage preparation classes this week. The minister burbled around the whole are you a bit crazy/sure situation. J apparently has not much experience – but puts more into a relationship than any man I’ve been with. So, yes we will wait to do the classes before getting our wedding date confirmed by the minister – because something well bad would need to happen to make it not happen.

My wish for you is this.

It comforts me to know, and amuses me, that somewhere in life I had already met someone even briefly, who later on I would love. I had lunch with J without knowing it during the first few weeks of being in Glasgow. I didn't meet him, but I could have.

In J is stored years of goodness. Years of being a loyal brother, son, and church elder has formed a core of love inside that is musical and creative and deep and funny and contented.

Put us together – and the core of me that is ready to keep going, to try new things, is creative, is practical, is affectionate – means that J roots me into the ground, and I lift his head to see the sky.

So my wish is – that the people, the situations, the ‘what ifs’ in your life would re-emerge. That the ‘missed’ opportunities would slide back towards you – and that you would experience the bits of life you need to be reassured that you will become the most you you could become in this lifetime.

And I hope that they arrive in your life – nice and sparkly, and soon.

Nobbly Bobblys

2008-08-17T15:34:00.000-07:00

I can assure you there is such a thing. It's strawberry in the middle, and is covered with chocolate and hundreds and thousands of hundreds and thousands. I ate half a one the other night, with future MIL, their family dog, and 007 on the TV.

Today, the emotion and energy that has been going up and down yo-yo style goes along way to explain why mid teary discussion I clonked over in Asda. Several things can trigger a full collapse for me, and I think I hit several in the space of an hour. Absolute full marks to Asda (and my loved one - because he's never actually seen me clonk over, and he chatted away to them like he handled this all the time), because in the whole history of kissing concrete/grotty floors/wood I don't think staff have ever been so calm and normal.

They shut the aisle, very discretely. They got me water, they made no extra embarrassing fuss, they offered a first aider, and they waited patiently. They even offfered a screen. Attitude speaks volumes - I think that is the least embarrassed I've been - because I was told after that the entire row of checkouts was agog at my fall against the freezers, but not once was I aware of it. Then they got me a chair, wheeled me to a checkout, where they'd already put my shopping through, and took me out to get the taxi they had ordered. The relief at not having to laugh at anyones 'oh my a lady has collapsed and now we must joke her better' jokes was immense. I was too ill to talk, and I didn't have to do my chat brightly to make everyone else feel better now routine.

In contrast to some of the most hideous post collapse scenarios you can imagine - well, it was so low on the trauma scale it did not register. Several collapses in hospitals I've been in, are in the top ten most horrific things I have had to deal with in my life.

Coping with good care after poor care is ironically a lot of why I am tense today anyway. It is destabilising when people you love either leave, or emotionally decide not to care anymore. My past involves some hard core verbal abuse, and questionable treatment from people in caring roles. The scars that leaves are interesting - you never quite know how deep a hurt goes until someone else gets close enough to try to kiss it better. I am both enjoying a time of blessing, and also wanting to run away quick in case something else awful happens. It's such a relief when people are reliable - but it shows such a sharp contrast against the lacking of care and trustworthiness in some people I have met, that it actually puts me out of kilter whilst I adjust.

I have met nurses who have shouted at me whilst I was on the floor, demanding I stand up. I have had two close friends walk out a room during a party because I had collapsed dancing, and they left me on the floor without asking if I was ok. A nurse decided I needed my family contacted during observations when I collapsed and her concerns were quashed. I told a doctor I'd nearly collapsed in front of moving traffic (great big truck, and me mid road), and she was not concerned in the least. Bizarrely, in a store where they like to pat you on the back pocket, I got the best looking after, and even got the bonus of no added humiliation to that particular oopsidaisy.

Celebrations

2008-08-17T01:50:00.000-07:00

Yesterday, we went to replace my unique but temporary mood ring with a very fairysparkle ring from the jewellers. Having informed my fiance that I would spend ages and ages choosing - it was the first ring I saw and tried on that I loved. As I said to him, once I find something that I love, then that's it in my head. Much, much walking around all day going, 'oooh, very sparkly.' Most of my choice came from the part of me that could be easily distracted by a packet of glitter.

In the evening we went to a Wild West night hosted by his family at his church. Three squaws versus a predominance of cowboys, including some more senior members enjoying the gun and gangster clothes maybe just a bit too much.

A wave of generosity in terms of gifts, best wishes, and offers of help has opened out to us from both of our families and friends that we have found overwhelming. It is deeply touching to be on the receiving end. Of course the loss of Dad is foremost in our hearts and minds right now. I know he would have enjoyed the celebrating, and planning.

Sitting one evening and writing a potential guest list was rather sobering. Actually seeing in writing that my family has lost both parents, all grandparents, and that we have only a few aunts and uncles was hard. I know I am blessed, I have a lovely brother and sister, and the families they have married into are loving, and fun. Being without both parents is a bit like riding a very big bike, and one that used to have two stabilisers. Its not impossible to ride without the stabilisers, but there is a memory of how good it was to have both together. There is a keen awareness that both our mum and dad provided a good home for their family, and a constant sense of disbelief that they cannot be contacted on the phone for a chat.

Everybody has a longing for a sense of home - it pulls us towards people, and decisions, and all sorts of coping mechanisms for the part of us that longs to belong and to feel settled. If a group around us feels safe and supportive then that is what makes life isn't it? So many people are valiantly trying to continue to grow a group of people around them right now, because for various reasons, that stable support around them has been shaken, sometimes very severely in their lives. Joining with another family just now is actually quite nerve wracking just now, as a family with three sisters and a mum and a dad who are all a bit crazy, and generous and fun is both welcome and taking time to get used to. It is a relief to know my future mother in law is also a believer in you can't really have too much shiny shiny glittery stuff in your life too.

Other news

2008-08-16T04:11:00.000-07:00

The last few weeks in pixie land went actually very well. Partly because I voiced my concerns over practices I was unsure of - and ignored a lot of things that as a manager I need to be mindful of, but as a play worker I can say hey-ho to. It's actually been a very interesting time - I learnt a lot about looking after littler pixies alongside women I both admire and disagree with.

I have by no means sussed out all of pixie-care, but it reaffirmed my mind that a gentle or a least consistent approach whenever possible is worth sticking to, even if it takes longer. Distract, rather than point in the face and shout - No, don't do that! (Please don't misread that - there is nothing wrong with yelling and pointing, and very firmly saying no - but when it is a constant, or gives a pixie a lot of negative attention, then they really do do things to get that attention. Super Nanny may not float your boat - but I have seen pixies do extraordinary things to get attention. Sometimes annoying things, sometimes dangerous, and sometimes things even really embarrassing to themselves).

The way a group reacts around the Problem Pixie in a group is fascinating. If a team is subtly undermining each other then it is easy prey for a pixie who might actually have a lot of power, who is able to switch from victim to threatener in seconds, and who can drive adults up the path towards screeching and threatening back.

I had a lot of fun just listening - and hearing stories from pixies unstressed by school. I think because we get them after school - a lot of the time they are really knackered and it's hard to tell if they play up purely because they need to really chill out, and they are in a group for three hours that they can't escape from.

I also started getting accupuncture recently - and that has been interesting. Tiny needles - and half way through inserting them I am nearly asleep on the NHS pillow beneath me. The physio giving me this is even using chinese points on the neck - very odd in a hospital. I think I am what is known as a strong reactor. I was wiped after session one and two - but noticabley calmer. Session three - and the pain switched off for several days - making me realise I really am in chronic pain all the time. All my muscles hurt if you rub them - some of them impressively so. Reduce the pain, and my concentration increases, my mood stabilises, I feel even a bit normal in the head.

The difficulty is sustaining the good effect. Unfortunately, the sessions the NHS can give are limited. But, I've been ill 16 years - I wouldn't have thought overnight recovery was likely. My instinct tells me it could take quite a while, but I'd had a strong feeling the needles would help. Seriously, though - it feels weird, there is no way it's placebo. The best way I can describe it is like someone is turning down the volume in my body, in my nerves. In fibromyalgia/CFS/ME the theory is that its like the nerves are out of kilter and you get pain that is more to do with the signals from the brain than it is the actual muscle. Sleep is poor leading to less of the chemicals needed in the brain to control pain. Every system can be affected - so allergies are more likely, and noise and other sense sensitivities. The pain can fluctuate between burning, sharp and diffuse like you have the flu - and for me, it can fluctuate a lot during the day. I cannot tolerate painkillers, appart from paracetamol, and it's ok, but doesn't solve it, and I cannot tolerate it full dosage.

Next on the list is using magnets at home on the accupressure points - you can stick them anywhere there is pain. I've used them short term before - again I believe they do help. In my list of to try and keep going with ideas I will also try St John's wort oil - it's a nervine, meaning it can help nerve pain. I'm trying arnica gel too, and have massage in between the accupuncture.

The hard thing to communicate in doing these things is - I have been researching for 16 years - and all the things I want to try cost money, and I try to use the low cost approaches regularly. There are natural shifts in symptoms - and some of them go away for months, only to return. In the words of the last massage lady - this is a stubborn bugger isn't it (that was mainly my neck, which astonishes all ladys who have a go at it, because it has naughty muscles). I do get encouraged when even I get an hour of better energy. I just am aware that I also have a background of constantly having to rest in between, or discovering the remission I had I have now left and am fully in relapse mode. Even mentally switching from I totally believe I can improve, to the reality of - it is not normal to have to limit my walking, working life etc daily, is actually really wearing.

Many ME people have no idea what to tell friends how they are because of this - if you have a good day - then how do you talk about the day, days, weeks after, when you are recovering, or worsening. I want to say just how grateful I am on better days, and I want to say how discouraged I am on rubbish days. Just about every person I know with ME is actually very optimistic in the way they talk, and will counteract a moan with how much they can do - and it makes a big difference if they know their friends mentally fill in the gaps with - and how much lying in bed are you having to sustain inbetween this.

Husband-to-be

2008-08-16T04:02:00.000-07:00

I am delighted to announce that the above position has now been filled by a loving and gentlemanly candidate. The candidate has weathered a particularly rollercoasterly time, during which he provided lots of hugs, listening, little presents and much, much more.
Of particular note has been the candidates imaginative proposal, where he produced a set of photograghs for me to look at. On photo number three I realised that the letters I could see that had been added to the photo were beginning to spell words, and I laid out photo by photo his proposal.

Life shifts fast sometimes. The candidate has shown himself to be loyal, attentive and creative. And weird, as one of the pixies pointed out - my response being would I actually be with someone who wasn't a bit weird?

Previous applicants need not apply. Congratulations to my new fiance, who is much treasured.

Shock and stress

2008-06-22T03:14:00.000-07:00

Without trying to sound like, and I claim the most stressful six months of the year award for me, I actually am having quite a serious dose of it.
I have been in the pursuit of another job for a long time now, but just before dad died, I told my boyfriend - I really mean it, I really am quiting; not knowing that ah, actually I really would need to quit.
Many many thanks to everyone who has fed and watered me - because you are not just healing up grief - you are also sustaining a tired, frustrated and wee bit scared lady who is working in such a tough environment she goes to see her boyfriend for lunch, cries all over her lunch, he makes her practice her tough face, and the cafe we meet in probably wonder what in the hey kind of relationship we are in. I would not say just now is top joyful.
On the day before dad died, both my deputy and other member of staff shouted at and criticized me for a whole heap of things during a 'we have lost our tempers and have forgotten we are being rude' moment.
I sustained a brave face the next day, not knowing that I was going to end up off for quite some time for the funeral, and then the consequent getting signed off with shock experience.
Both ladies have continued to be both occasionally supportive and majorly critical in a wearing me down manner, that have included a few finger in my face moments. Not aided by the fact they are both exhausted themselves and walk around like two hot pots of ticking bomb expressions.
So, hide the shock, look taller, keep firm, tell boss.
Ah, here's the rub. Everyone is in disagreement with me as I am not willing to split the staff so that one member of staff will be effectively left alone whilst playing with the pixies. This issue I have wrestled with for months - the Care Commission asked me to do it, and I said no. I've been told that what I think is a load of bull (said very angrily), I said no. Phone calls have gone on behind my back, and meetings arranged, and I said no.
I have been willing to quit over it. I did not know I would effectively get so undermined by it, that I literally have to use every resource possible (prayer, chocolate, ABBA, tidying, not tidying, begging people to tell me what I am doing well) to face each day. I have dealt with tough staff situations before - I know that there are options I could use if I wanted to fight - but right now - I just want out, and I am trying to leave with as little damage to myself as possible.
Now, when I discussed this further, I was asked to consider compromising my stance. Perhaps the staff could sign a waiver. I said - then I would rather not work here. This of course is far easier to say when a friend has kindly helped me get several interviews lined up. Even so - I lost a night of sleep after. I could not be the kind of manager who puts any staff in a situation where if they were accused I could not verify I did all I could to protect them. I do not have the energy to keep fighting the snidey comments and put downs, and I know I have shot myself well in the foot where people go - your leaving, we will miss you. I'd safely say - everyone will go - oh good, she was making a fuss for nothing anyway.
I was advised to stick up to the staff more - I am doing this. I don't know what all the issues are - I suspect there are many - and that I am not the sole source of irritation. If I get a job, I have to work a months notice - not fun. If not - I quit anyway.
In the midst of this I have felt God saying to me - yes you are in the middle of a hurricane - you are right in the eye of it, and I am with you, and I know this hurts. Songs about going from the old to the new, and about following Him, and the joy that comes with that have filled my head for months. At the end of this week prayers that my boyfriend and I prayed for his church, a church that is struggling to survive, seem to be being answered better than we hoped - and that helps. I think there is more goes on around us than we think. I waver between the security that storms are often signs you are actually doing what God wants, and telling Him, that is the last time I tell you I will praise you in all circumstances.

Thank you again in advance for the conversations and hugs that I know you would all give. I'll put them all in the bank account - because it's getting heavily withdrawn at the moment,

Shock

2008-06-05T05:45:00.001-07:00

Just now, I have been signed off work for a week. I feel dreadful.

When I heard the news about dad, I felt as though I was being punched right in the middle, so hard, it was like having a car plough through my solar plexus. Now, I look ok on the outside, but on the inside I feel sick. My heart feels bumpy. My stomach feels tight. And I have this anxious ball of sludge that keeps overwhelming my system, over and over.

I can work, but just not right now. I feel unable to cope with the shaky feeling that comes just having a normal discussions, never mind the billion things I need to remember to keep the pixies ok.

Cards, texts, calls, sharing your news, sharing your losses - ok all of them are the correct medicine. I already knew life was finite - our family lost our mum eleven years ago. I already knew to regard relationships as precious, but this is the absolute reminder. We all loved dad and we will all miss him so much.

Many people live without their parents - and that is the full result of this loss - that our family has no Big Person to go to who will listen, fix things or be in charge when we can't. It's an exposed position. I feel raw - like a tooth nerve in the open. The change it makes to you is hard to define. You want to tell people to cling to their family and keep in contact - to salvage bonds where ever possible.

But, families are not like that - they are messy, and often, the very adults people look to for support - are not available for them. There is more than one way of losing your parents. Caring for a mum who had lost herself to Alzheimer's, or for a dad lost to drink is also a loss of what is admittedly often a perception, but a real loss.

Nobody wants to be fully in charge - the challenge in marriage is often part of this realisation that we all want someone close to call mummy or daddy, and sometimes we want that from those close to us. Then, like the kid in us likes to do - we then turn round and say that we have changed our mind - and we don't need a parent thank you, we are all grown upped thank you.

I have had a lot of conversations with people about living as a community in the church recently. The very bonds that we break to get away to find ourselves in a big city, are the very bonds we wonder what to do without. I know the thought for many people that the church is a community is ridiculous - because how can an organisation that has so many politics and strange traditions be a family. I have no answers - but it's interesting so many people crave the belonging. Family life can be crazy - and there are times to tie them firmly to your heart - and times when in order to love, or survive - you have to break away.

I am divorced - and I know how even if you try your darndest - not every relationship is rescuable. The bible talks about trying to live in peace to your best ability. It also talks about people crazy enough to sell their possessions to benefit each other. Somehow - one man's resurrection was to inspire people to reverse the concept of living for yourself - the church is a body. That means - all bits work together. Christians in many denominations are now wrestling with this - what does that mean - how do you do that?

My boyfriend and I have several decisions we are looking at right now - as both of us are heart committed to the idea of a community church, where Christ is central, and where the ability to be open to God's direction is real. Both of us have the same dreams with different skins on - and we hope we can build together whatever God asks us to do.

The Best Pep Talk Ever
Primary seven pixie to group of pixies doing fun run - 'Run like horses!.....no, no - run like the goat!'

Dad

2008-06-05T05:33:00.000-07:00

At my dad's funeral, I had the privilege of sharing my thoughts on a man who I thought was both couragious and eccentric. Here is a little bit of what I said. I asked that people be more mindful of the environment, of their uses of their time, money and energy - because dad was so passionate about making the world a greener place. He loved buying trees. If he was still here - he had ambitious plans to challenge the government and invest in green projects.

Dad
There is a time to think small, to care about fixing up a kitchen just right, in every detail.
There is a time to think big, to want to march into parliament and demand that changes be made.
There is a time to give your heart to one woman, and to love her and care for her as wife and mother to her children.
There is a time to give your heart to many people, and always have the time to talk to shop assistants and strangers.
There is a time to save, and economises and work hard to give your children what they need.
There is a time to take your money, blow the lot, and treat your family to Disneyland.
There is a time to strip engines from cars and rebuild washing machines yourself and mend what is broken.
There is a time to buy five electric bikes and show them off with pride, just because you can.
There is a time to fill your children’s lives with smart inventions and rooms filled with oscilloscopes, and things to be saved to be mended later.
There is a time to sit still, and talk and talk, and laugh with your family, and allow yourself to rest.

Comfort

2008-05-22T03:38:00.000-07:00

On my windowsill is a display of sympathy cards I have recieved after my dad's sudden death. I think when people send cards they think that it's a small thing - but having them here is very comforting. To see the care that went into choosing them, and thinking what to write.

The pixies sent a really sweet card - where one of them has written - 'Cheer up', next to their name.

People who come close and share about their losses are also very comforting - this loss is too big to cover over with - yes as a family we are fine.
We are not fine, we are not ok - we've lost part of the structure of our lives and even the energy to hide how hard this is too much.

At the funeral - it was so good to have people from every stage of our lives their. People from our childhood church, people who worked with Dad, the families of our partners, friends from the past and present. Don't underestimate the value of just sitting with someone in their grief - it helps anchor a part of you that wonders when feeling normal ever comes again.

How to heal up a broken heart

2008-05-21T03:14:00.000-07:00

Last October, there was the sensation of reaching the bottom of the barrel on more than one occasion. That oh oh time, when you go - ok think I'm going to get hurt, and it's going to hurt so so bad.

December - dumped by text. Hurt more by another's cowardice than their intentions. There was a brief flurry of discussions after that - that mainly confirmed - this person no more knew their intentions than they could calculate the ability to make their actions match their words.

Just before New Year, my Dad threw his holiday surprise routine at me. Let's go to Spain, for New Year.

I could survive Christmas - Christmas I was with my family. But New Year - yes, leaving the country was needed.

Holidays with Dad were always a bit of a white knuckle ride - he would combine ingenious last minute deals with some times some quite obscure travelling arrangements.

I knew if we got to Spain on New Year's eve - well that would give enough time to keep breathing until I could sift my hurt through the filter of Spanish air. Dad and I spent much of our three days away talking about our natural affinity with Spain, with it's air, climate, and look of the land. Like we had returned to our ancestral home.

On New Year's eve - we went down to the beach. We walked around the really posh restaurant that we would discuss in awe - and recall how we weren't going to have dinner there because none of our holiday clothes were good enough. I knew back home there would be people and parties, and shouting and cheering. We didn't have that - we had the sea.

A thick black sea swept up back and forth over the sand. We walked up and down the beach, listening to the hush, hush of the sea at night. It was the best way to greet the next year. So, we spent the remainder of the holiday just doing that - watching the sea.

I told my dad how my homeopathic medicine had been chosen to reflect my love of the sea and the beach. He told me my mum had been the same - she had loved the beach, it made her feel better.

The first day we sat - it was hot. We sat and looked out at the waves, and enjoyed the sun. In between our sea watching bouts - we went to cafe's and drank coffee, and talked.

We didn't know this would be our last holiday - we didn't know these would be our last chats.
That my lasting memory would be of watching my dad sitting at a bench, with sun hat on, wearing t-shirt and shorts, looking over the shore.

Holidays had always meant lot's of plans. Dad always took his music, his mini stereo, an electric bike, and an intinery that meant we would go and see things. This time - he hadn't brought much beyond his clothes.

I remember how surprised I was that he was eager to go to cafe's and just banter away. The cafe we sat in on New Year's day was full of happy crazy music and drunk people dancing outside - a couple who owned the cafe were swaying with each other as they clasped hands and waists together.

The next day it was colder, and wet. We decided at the end of a rather nippy wave watching session, that we would go for dinner. The cafe we chose was deserted. I'd spent time in the morning chosing a good place to go - this cafe had displays of sea food that were mind boggling. The cafe was deserted - so we sat inside and ate sardines and meat and salad.

I talked to dad about the areas about pixie care, and running a pixie club that make me question the far bigger issues of how we look after our children - what is right, what is wrong. Dad looked at me, and said, wow, look at you, you could be on TV. A dad who told me everything I needed to know - when you aren't being heard, when you want to say something important - I believe in your ability to say it.

All the watching of the sea - had helped wash away the sadness of the year. A near promise of a future and a family had drowned, and I was filled with awful dreams of a house whose walls ran with wet inside that I could not stop.

I had cried - but the sea, her lovely waves entered a part of me that could not cry. A part that needed gentler care. Dad and I talked briefly about the loss of the relationship.

I knew somewhere deep inside that this was all I needed to get me ready - to be ready to pick myself up from the I have so been dumped corner and start running again.

Dad gave time. He probably talked to more people than we will ever know. He loved his family. None of us knew that his time was short. That he would die suddenly.

He wanted all of his children to know he was proud of them. That when he did die, that they would pull together. He spoke often of how happy he was that we got on well as adults, that he could come to us all for advice.

You get to meet people sometimes who are giants - who live big. Dad lived big. Today, right now - think of those people and send them a hug. Send two.

Easy peasy

2008-05-21T03:13:00.000-07:00

Falling deeply in like with someone after having heart broken four times in one decade.

Piece of piss.

A difficult tale.

2008-03-14T19:12:00.000-07:00

Wunsaponatyme…there was a grown up lady who lived in a house full of smashed up mirrors.
Now that was really sad, as before she’d lived there, she’d already had enough mirrors smashed, without having to live in a house enduring more smashing. She had plenty needing mended without this onslaught of slivered glass. Some of the mirrors were into such tiny pieces – it was like a shower of splintered ice across the hall carpet. Some would say that was even dangerous.

One day, she told a friend about the mirrors. How can I know who I am if I cannot see my own reflection?

The friend, who was very wise, and deserved a National Award for friendship, amongst many other friends, put her arm around the lady, and wept. She too had noticed the broken mirrors. How would her friend survive? The tears of the two friends were like a large bandage, but they did not stop the mirrors breaking.

Then one day, a wind swept through the hall, and the lady was punched, hard in the solar plexus, pushing a black hole into her. This was worse than the glass. It ended her heart. Almost.

Too long the wind rattled through the hole – and too long the glass remained unswept, until at last, a large hand opened the front door and shouted – leave. Now.

Right down the middle, the lady was crushed, and yet she had to leave. She cried for the wind, for the wind was very stupid to have caused so much damage, when the lady was made of silk and song and child and womb and beautiful patterns, and it parted the marrow from her bones to know the wind would never understand it’s idiotic power, and how to release it’s energy into good.

Leaving a vortex is not easy, even when the vortex is empty and vile.

She was swept up into calm, but not for a long time. Splinters hurt her feet – she walked the crooked dance of one who does not have all the answers yet.

Deep in the woods, another mirror waits. A straight mirror, large and strong, and even a bit fancy, with filigree around the edges, just because the lady liked beautiful patterns. A sturdy mirror. She glances at it, wary of its sturdiness.

The forest is a kind place. Bears sleep under the trees, biding their time, aware that this time the mirror may be quite the right size for the lady, who looks now into its centre, aware of shards of splinters melting in the soles of her feet.

Excuse me, I'm reacting.

2008-03-07T14:22:00.000-08:00

When I was a little girl, I adored eating plasters.

What? Shouts everyone who knows me, But she's allergic.

Precisely. The smell and taste of that resiny stickiness to me - oh man, I can remember it so well.

If it weren't so russian roulette - I'd chew one now. I mean I adore it - that piney medicinal smell. If there is a pine tree - I want to bury my head in it. It doesn't matter logically when I get near. It even doesn't put me off when I start to feel very sick. (So I tell myself - Cover your mouth and nose now, and walk away from the hypnotic tree. See, and you thought you were the weirdo). The addictive quality of an allergen is just one of those, do your genes always want you to survive and be the fittest - it'd make more sense to hate an enemy full stop.

Right, moving on to my next point - yep, allergies and dating. Is there any easy/romantic/ho ho ho look how suggestive I am way to say to someone you fancy - actually your shower gel could potentially make me throw up. Lime, to be precise - and it took me a while to identify what it was, and no matter how much I liked the smell, it did not have a good effect on me.

Yes, on the other side, apparently asking someone to change their toiletries is well, not a hard thing.

But, it leads me onto a wee experiment I would love to test. See, one of the first signs I have when I have started to REALLY react to an allergen is this - I suddenly realise everyone in the room is annoying me so, so, so, so much. I have seen me shout, cry, and garble nonsense in this state, until I go - oh right, going to spew now, guess I should get on with that bit, leave the dramatic mood swing till later.

Now, what if you were able to identify and correlate that and somehow prevent arguements induced by the first stages of allergy.

What, what is that - yes, it's Relate phoning me to thank me for my idea - as it would cut down on their workload.

Man, that was another brilliant idea that just sounds a bit, oh, I don't know what on paper.

Like I was crazy or something.

Health and Safety

2008-03-07T13:41:00.000-08:00

Well, this week I got a letter from Childline (the back up plan for if respite cannot happen), and here is an interesting dilemma!

Ok, I cannot volunteer there because they cannot take people who are unable to come down 5 flights of stairs, as in a fire they would be a health and safety risk.

Now, which is this - a health and safety issue I should concede to - or is it discrimination? Imagine if that led to me not being able to work in lots and lots of places, because they were on the 5th floor? What is the limit - is it you can only work in jobs where you can be on the ground floor?

Throughout the day, interesting conversations took place. The deputy at the pixie club coincidentally decided that we would do a fire drill. It's not a situation I've worried about too much at work, as when the adrenaline kicks in, I could get me and the pixies out, and it's all ground floor. Stairs have been the lifetime nemesis. I have always had difficulty going down them - way more than up. It feels like my brain is trying to refocus when I am doing it. Is it my wobbly leg syndrome? Is it my inability to do sequential activities quickly syndrome? Is it a lack of depth perception (how do you test for that then?)

At the end of the fire drill, a 5 yr old pixie plaintively asked the deputy what would happen if I (that is me, Miss Fairy Sparkle), could not get out and I got burnt to death? (Not because I'm disabled, just a what if question).

(Yeah, that puts a heavy perspective on it, when a 5 yr old asks with big eyes).

Not a problem, says the deputy, that would never happen - she would bodily carry me out.

And this was AFTER her appraisal.

Later, a close friend and I were discussing the matter, and he said, he would look up the law for me on discrimination, what with him having studied law, but um, yes, he would find it hard the thought of me being somewhere I couldn't get out easily.

Not once has he ever seen from me anything other than the slowest and most awkward looking descending action on the stairs. Bit of a hard symptom to hide/abnormality/freakery/boring to watch one that.

Then later, my close friend's mum who is a home help, spoke about how she has been told in a fire, just to leave her clients in the house, get herself out and that's that.

Reader, I am stumped. If I was able to write a disclaimer saying that I was ok with taking the risk, and would hold no one responsible for my crispy demise, well why couldn't I do that? How are all the many other disabled people to work if this is a 'get out' clause? If there was a lift they could still say nope to me, because well, you're only to go down stairs in a fire. So, beyond raising Scotland to the ground and starting again, tricky one, on the old access front.

However - is that a fair action? I know what it takes to make some tough health and safety decisions - and people might argue they would feel guilty letting you risk your life like that. Now, this is where living in Glasgow, puts this into sharper focus - this is the land of tenements and high rises, and dodgy lifts is it not? If I want to be really safe - best not visit any friends any more ever again.

When you have been homeless, and you get offered unsuitable accommodation but hey-ho at least it's not up flights of stairs you might not manage - well that's all right then.

As a single person - that disclaimer would be signed in a jiffy. If I were partnered, well, I would consider hard to be honest. No matter which way I look at it - 5 flights of stairs really is the best way to demonstrate - yep, my leg's are crap, and I should have got a refund at birth : ) (Yes that was also a CONTROVERSIAL thing to say).

Or have I just been on the dishing out end of health and safety for too long?

Dating

2008-03-01T14:37:00.000-08:00

A good excuse to wash

The Relationship Fairy

2008-02-18T13:13:00.000-08:00

I don’t know what point I was trying to make yesterday, because it sounded V Grand in my head, and then – oh, well, anyway I hope it makes some sense.

The Relationship Fairy (RF)
‘So, about this hurt heart thing?’ RF
‘Yes?’ Me
‘Well, I’ve had a look, and you’ll be glad to know your heart has not landed splat on the ground. In fact, I put a trampoline there just in case. It cushions the blow.’ RF
‘Oh, Ok.’ Me
‘And the thing is that very soon you’re going to get asked out on a date.’ RF
‘Oh, right, Ok.’ Me
‘Right indeed. Fine. Now you’ll be needing this.’ RF
‘What is that?’ Me
‘Well it’s sellotape – in case part of your heart falls off and lands in your lap during the date. Just slap a bit of that on - you’ll be fine.’ RF
‘Blimey.’ Me.

Version Two – The horse of love.

Once upon a time you went for a very giddy ride on the horse of love. No saddle, no reins, and oh crap, you landed in a great bit pile of thorny thorns. Very very bad. In fact, a right pain in the epidermis, because the horse took you to the thorns several times before, and you said specifically, don’t take me to the thorns you damn steed, and the horse went la lee la lee la, and you went – you are FIRED horse of love.

Behold, in the field of thorns a pile of onions came beside you, and took off their coats, and you went – oh NO, the bit where I now cry my entire body weight. Yes, said the onions – and here is a book to write in and get the story of the thorns out into.

Behold even more – the onions summoned another horse, and the horse said – come on, let’s go, and the onions shouted;

Do not fear! Get back on a horse! We will always be here if you need cathartic food.

Except the littlest onion for he was frightened of being engulfed by real teeth, and he opted out of the whole you can eat me for solace and to help you reyhdrate thing.

ThE EnD

Lunacy v lunacy

2008-02-16T02:03:00.000-08:00

Very Important Disclaimer.
I have had ME for lots of years. It is vital that ME gets better recognition as an illness where people have to be given allowances for what they cannot do, and not be pushed too far. At the moment, my life is not the best advocate for that. No parent at work knows I am ill, and I am aware if they knew I had ME then I too could be placed on the pedestal of ‘Oh, yes, I know this lady with ME, but SHE can work in childcare – so why aren’t you able to do a tiring job like that?’

Someone said to me recently that its not what you are able to do as a disable person that is important, it’s the choices you make. So, what I am advocating for here is merely my choice – it’s not a choice that everyone with ME maybe looking for, but I hope it makes sense.

I am realising that it is so important to me to be able to choose what I do with the limited energy I have, but to also have it recognised what I need when my energy levels are low.

I went for my medical this week from my GP for respite care for looking after children. I suspect that part of the success of her responses came because they find I’m tired but I want to do these conversations easier than I’m tired and I need help. I explained how much I was prepared to do in order to save up my energy so that one weekend a month I can look after a child in my own home. She was impressed – you have really thought this through – this sounds great!

Leading up to doing this, there has been such a lot of debate in my head. What if I project all my well bits, and then get the not well bits ignored when I really need it? What if I get accepted, and then one day if I have my own children have to fight for the opposite – I need help, and I have exactly the same symptoms? There is another lady with ME doing respite care that has been recently approved. The assessors are not deterred when you say you have DLA.

DLA is a benefit awarded on the basis of your ability to care for yourself and walk. I get low rate – and it’s awarded on the basis I have difficulty with both. Now, the more I’ve thought about it, the more confused I am. I feel like I am only able to define my disability on the boxes I have to fill in on that form – so what happens if I want to cook a big fancy dinner – or look after a child that requires both feeding and caring? According to the form – well, I need help with that all the time.

It doesn’t explain that no matter what I do, my concentration is poor and I feel ill – but that doesn’t stop me from being able to care for myself and another child. I just have to rest more, and adapt more in order to do it. However, no DLA, no WTC, and I would be unable to afford to live, as I am too unwell to work full time.

Being treated as a fully functioning adult at work, means when I do have to defend how I manage to look after children (you do know that they can run fast don’t you? you do know that they can have difficult behaviour?), is sometimes quite alien – as I have to find the words to explain to someone who is just looking at me with – you do know childcare is exhausting?

Looking after children can cost me a lot of time in bed. Now, I am not advocating self-destructive behaviour – look at me, what a good soldier am I, battling against the mighty ME by pushing my body to the limits! That kind of behaviour can lead to very bad relapses. What I am saying is – I would like to live my life in a way that if I have to spend days in bed to save up days of energy – I’d like to spend that energy on what I love, and sometimes that might be in a crazy way.

Pushing to do respite in my head is actually a sign of lunacy – but something tells me deep down – that it’s the kind of lunacy that works for me. Ironically – if I got approved, I’m already way more motivated to taking rests when I’d rather be doing things – because the goal looks so much more fun : ).

Ms FS’s really simple guide to doing well in interviews

2008-02-16T02:01:00.000-08:00

1. Quite simply, turn up.
2. If when you are applying by phone you are asked whether you know the building where the interview is, it’s best not to confidently answer ‘yes!’, if you then are going to phone at once or twice later to ask angrily ‘tell me where your building is.’
3.If you do get lost, and then phone to ask for directions, it looks better if you then don’t turn up thirty minutes late, when you were only two streets away lost.
4.It may be wise not to reveal just before the interview starts, ‘Oh, I’ve just come back from working abroad because I found out I was working there illegally.’
5.Two not so hot selling points – I’m local, and at least you won’t need to give me maternity leave.
6.Tell me a little about yourself? Ok, if you pass the ten minute mark, that’s not little.
7.Complaining about your previous job for more than half an hour doesn’t sell.
8.Weaknesses that maybe better to hide include – ‘I’m actually quite gullible, but let’s not even go there!’

I have let my deputy manager know I will tell her when we have had a normal interview, in case both of us begin to lose the ability to spot it.

Concussion of the heart

2008-02-09T06:26:00.000-08:00

Hearts really should come equipped with crash helmets. Then they wouldn’t get concussed so easily. See, that is what I have right now –concussion of the heart.
It’s kind of a shocking sensation and you wonder how you will cope with the bruises, and the swelling and the way the room seems too far away to focus on.

But, I’ve checked the warrantee and you can’t get a crash helmet, ever. In fact, you have to keep using your heart, even when it’s out of order. It’s the love law, or some crap like that.

In fact – you have to still keep loving, hoping and dreaming – even in the middle of concussion.

Like who decided that?!

I have been told I cannot do respite care on the basis of a doctors opinion I’ve never met. I protested. Now, I have to go to my GP, who apparently knows me very well, and be asked a huge amount of questions, and even have the size of my hips measured and recorded! I’m a woman – I have hips – but they don’t need labelled. Maybe I’ll get anaesthetic.

My heart must be like – ok, is there a reason you have to keep chucking me out of large buildings to see if I bounce? Life is an odd fish – all I know is I really believe I was meant to ask about respite – and maybe it’s to open up another opportunity.

After years of saying – but I am disabled, I really am – it’s an odd thing to be confronted medically with – yes, you are, and we need to see if you actually can do this. I am torn between defending what I can’t do – and defending – actually I’m really, really good at this.

Yes, I am ill, but yes, I am able. This week, I dealt with the police and social work again - and found that I have adapted over time to being able to do it without palpitations and sleeplessness. Playwork is a difficult job at times – because sometimes you have to involve a high level of adult intervention and yet make it look all normal. Luckily, I got a good game of Blood Soup with the littler pixies this week to fortify my creative inner, ‘please can we just play games instead of do real life’ child.

A new life

2008-01-21T13:40:00.000-08:00

Well, the problem with losing an old life is that the only thing that can replace it, is a new life. And they don't come all prepackaged in Tesco.

Looking for a new job sort of counts, even just a little bit - and today I phoned about two. I also phoned about a new thing I would like to do. I am currently getting assessed to do respite care. See, here's how it goes ladies - the government will give you money and a baby and a cot, for however many nights a month you want to do it. Ok, it's not quite like that - but it might mean looking after a small child in my own house becomes a possibility.

Why would anyone want to do this? Answer ; because they like children, and don't want to scare boys away by saying - fill me with your little babies.

I would not do that - I'm teasing.

I got back to pixie land after a NASTY virus ate me last week - and they said, oh good to see you and how are you? I was like - who abducted the pixies brains - did my deputy bribe them?

My dare to you - do one thing, just one that you think is a bit mad today - and if you want specific dares - then please, ask me, and I'll give you them.

Thanks v much

2008-01-20T07:00:00.000-08:00

This is a BIG BIG thank you blog. But first a wee story.

There were two houses who lived next to each other and the bigger house said - hey, let's support each other and get cosy. So the little house said - yes, that'd be grand. Two years on, the little house said to the big house - so why don't we turn into one house, after all you did suggest it.
There was no reply, and the little house looked and discovered the big house had turned into a big pile of ivy, growing up the walls.
Oh, dear, said the little house, I thought you said you would support me.
I can't, said the ivy, I 'm not a house anymore.
Then the ivy turned back into the house, and then back into the ivy, and back into the house, and blah, blah, blah.
Right, said the little house - are you a house or what?
Or what, said the ivy.
So the little house said - nothing whatsoever, and moved away from the revolving ivy/house.
THE END.

To everyone who has poured in love, tea, prayer, listening, wisdom, patience, more tea, more wisdom, more listening, and more tissues - thank you for your support. Here we go, my little life lesson -we did it two years ago, now it's time for a repeat;

You can do everything right. You can invest in good things. It may still go Tits Up. Not nice tits up - not all cuddly, but more like, argh, ouch, ouch, a bad thing is happening.
Doesn't matter - keep dreaming, keep hoping, keep attempting.

In the mean time - the little house, got it's heart broken. When it says it's fine, it means - I am broken. Broken means - in half, and pretending to be ok. That takes some time to mend properly, and may even taken quite a while.

Allergic to Christmas

2007-11-17T14:48:00.000-08:00

After having a very strong allergic reaction to cinnamon in Napiers this week (I was in for 5 minutes, and they have very Christmassy scents, by the time I got to work I had to be sent home as I was very ill and close to throwing up), I am asking everyone to be on the look out for other shops (I already know oxfam has cinnamon candles, and tesco). I will be reissueing my food list - but please could people be aware and make anyone I may visit aware that I am now HIGHLY allergic to perfumes - and may be too polite to say that what you/they are wearing is making me feel sick. I may react to ANY strong scents, especially christmassy ones. Candles, pot-pourries and air fresheners will not only make me feel tired and nauseous, but could increase my chance of collapsing. Thank you - that also means I cannot use any essential oils or eat any spices.
SPICES = cumin, chili, coriander, turmeric, saffron, curry powder, cayenne, etc.
(The only one I am uncertain about is ginger).
It seems to be the amount of spice I eat that is the problem - and a trace of spice, or small amount in a packet may be OK. If in doubt - leave it out (this includes black pepper). If you have cooked something - then leave out the recipe or packet for me to read - it saves both parties the embarrassment of me being able to taste something in the cooking, and then wondering how to ask you, especially if there are any guests around.
The same seems to go for most herbs - the main suspects are Rosemary, and Thyme. My suspicion is that several of the main chemicals in pine (a-pinene, b-pinene, limonene) are in many other herbs and spices, and may mean they are a small risk -all I really know is I am WAY more allergic than I was before.
Fresh paint or varnish will make me throw up - if a person's level of allergy increases - it is possible for them to develop anaphylaxis - and that is why I am being so cautious. However - the worst I have had is being sick - I need to be kept warm, and put somewhere comfy if this happens. If I collapse, well er, that's another bit of illness, not even related to allergy : ).
By being this observant and vigilant - I have achieved a level of physical stability I didn't know I could - and although this last year has been a very difficult journey of having to adjust to rapid lifestyle changes - chances are I'm more at peace about having to give up so many recipes, and avoid so many places than it will be for my friends.
Believe me - I know it is difficult when you want to cook fancy and your friend needs plain. As an avid cook I appreciate this.
If I do visit you, or go to the cinema or church with you - please do not take offense if i sit away from you - it does take me longer to recover if i have been breathing in perfume (and that includes fabric conditioner), and it does make the ME/CFS worse. Try and spend a day smelling everyone and everywhere you go - then calculate just how taxing that is on an immune system that thinks these natural substances are poison. From computers, to shoe leather, to toothpaste to furnishings (new houses, and new furniture make my head so fuzzy, my mood so wobbly, and can take hours of sleep to recover from), every single one of these are related to pine.

Roll on my wee oak fired cave in the barren hills, I shall eat my fish and potatoes and think of you all there.

Pink Balloons should be on the NHS

2007-10-10T13:53:00.000-07:00

Well, I have never had a surprise party in my life, and this week I had two. In fact this week has had lots of surprises. Yesterday, I went to a training course my boss asked me to go to on her behalf, in a football stadium. Got there harassed and late, as the taxi had been snarled up by a lost booking.
Enter very late lady in a roomful of pixie care people, 99.9% women. We look after the age 4-12's pixies, and let me tell you, most managers of this ilk - you would not want to mess with. We don't look like headteachers. We look like we are made of a bit rougher granite, and you sure as heck don't want a Time Out from us, because by gum, we mean it. However, our hearts are softer granite - and we usually come with nice bosoms and the look that says I work bloody hard in my job - and believe me, pixie carer's do. They all worry they are doing the right thing, and I think parent's would be shocked the level of paperwork, sweat, blood, tears, sleepless nights and Prozac it takes to run a pixie club.
(I don't know if I look like granite - but I know my look is fairly fierce - so I presume it rubs off you. )
But, then I discover I've had half an hour training (this is the form, fill it in, like it says on the form) and suddenly we are networking around the stalls. Which I do like mad to justify my representative skills. And then it's upstairs for lunch. Oh, goes my eyes - this'll be the restaurant then.
There were no sandwiches! It was the poshest lunch I've eaten in years. Now the guilt is sweating out me - I miss most of the training, and now I get a free beautiful lunch! Believe me - this has never happened to me as a manager before. It was fab.

Post inspection eve, I came down with the very sickness virus I'd been bugging Public Health for info about. And when I say down, I mean slaughtered. My family came the next day for lunch (three cheers for my niece, just because she is so very beautiful!). Then two days of bed rest/wall crawling around the flat which had me all weepy and wanting to nail the floor straight to stop it wobbling - well let's say it was a jolly good time to have a FREE YUMMY LUNCH.

So, when I came home from work with a very good friend I was too busy describing the menu to really take in the pink helium balloons in my hall. When I walked into my living room and saw my friends there and lots of balloons - well, I don't know who got the biggest surprise - coz I made a very loud response. A wonderful surreal moment, that will stay with me, as a very happy memory to have in your head. I'm 30something this year, and I have not been looking forward to it at all.

Thank you to all the generous people who made my pink balloon day happen - so pretty.

Today the pixies threw me a surprise party - which was full of 'Cover her eyes, no COVER them, no I'm covering them, NO IAM, now walk towards the door coz the candles are you know...oh, right, no, stop, NO looking!'

I have been given a painted canvas by a 6 yr old - and it is gorgeous. Her mummy persuaded her to write -'You are the best ever', instead of 'It's a shame about your age,' in my card.

'But mummy,' she said, 'It is.'

Sometimes when a rollercoaster has been rocking - your friends help you to see the twisty fun bits at the top.

Inspector calls

2007-10-10T13:30:00.000-07:00

'The worst thing that could happen,' I had said, ' is if the pixie club inspector comes in when we are suddenly short staffed.'
So, as soon as an agency pixie carer came in sick, and I sent her home, whoosh! I turn round and there we are, summoned by circumstance, is our Very hard to Please Inspector.
Woo, were we inspected. It lasted two days, during which every single pixie was interviewed, all the staff were quizzed and several debates were had. That was me - after last year, I decided I would speak up when asked to do something I disagreed with. So, by day three, when you get the Big Chat, my knees were knocking. This is when you find out all you thought you might be doing right, but weren't. Don't get me wrong, the Inspectors do a good job, but there is so much controversy in Pixie care, and we get so many conflicting pieces of advice, it is really hard to know whose recommendation to follow.
I am friends with the police, social work, environmental health, public health, local pixie care agencies, various headteachers, etc, and I could spend all day trying to find out the legally correct procedure to put in a policy. In fact make that all week.
Bet they cheer when I call - I asked public health for information in writing last week, but they said they were too busy, and why wouldn't a verbal do? I used my best, best manager voice to explain why a verbal wouldn't do. Soon, they'll barr my calls.
Well, then me and my top Pixie leader (my boss), got a verbal thumbs up from the Inspector. We were like, what? Eh?

So, I told her I had a disability when I was asked how we adapted games for disabled children, and that this made me very adaptable. My boss said her face was a picture, and that she looked like she was dying to ask what my mysterious malfunctioning part was. I told her we taught the children's charter by drama, coz it was more fun. We did do this, but it was so we could do it without acting like teachers. We acted like awful said the pixies.

Three tonnes of worry fell off as soon as we realised - we were finished, and fully bona fide inspected. Literally three tonnes - I weighed it. Pheeeeooow.

Is this a regular habit then?

2007-09-27T11:32:00.001-07:00

Well, looky at this - I finished my writing course, leaving me with time to write.

Advantages of writing course

Homework - makes you write to deadlines.

Marks - makes you feel you have achieved something.

Other people - us writer's like the craik you know. (Spelling?)

An excuse to say - ooh, dishes/housework/paying bills, etc - ooh no not for me, I am a writer, and am now too busy for life.

Disadvantages of writing course

Marks - makes you over analyse your very pretty story, and bore the pants off people who have to do the -No, no, I don't think getting that mark means you are crap, and yes I like your story, ad nauseum.

One of the hardest things about explaining why you believe ME is not always related to having a type A personality, is that I am a type A personality.

I bloody well like certificates, and recognition, and to know that that weird look that lady gave me doesn't mean I am a big failure, and that getting good marks makes me a, er, more developed person. All ideal for writing of course - as long as neurosis helps form a craft, well, then, let's have more of it - sometimes you cannot get enough.

EEEEEEK. EeeeeeeK, EEEeeeEEEK. The pixie club I help run is getting inspected soon. I have enough invisible spectre's on my shoulders whispering - have you remembered to count the pixies? have you given them both fun and healthy snacks? have you solved the conundrum of safety versus risk in the games they play? etc, without a real live person coming in to put their oar in.

This week we have hit some kind of lovely calm - seriously well behaved pixies, who appear happy a lot, and I have got to play with them three days in a row. Had to eat a plastic fish cooked on a rather grimy pretend cooker - but you know, plastic fish is the new sushi.

Had to also do my 'I am very dissapointed talk' regarding a broken toy stethascope. Bzzz, bzz, say the pixies, can you hear a women moaning again?

Oh, and had to see the headteacher - told me to stop calling her Mrs, but my palms were just oozing with the conviction she would know I wasn't a manager of pixies, just a little girl pretending to be 34. She stole that thunder though - got to get health and safety in, she said, so that they don't think I'm just a wee woman being fussy. Unite wee woman, unite!

Cash v Beauty

2007-09-26T13:11:00.000-07:00

I long to search for poetry
In a mind made well for mystery,
But it ain’t got so much appeal for me
As I am motivated most by
Promises of fame
And a nice fat fee.

Bendy as a ballerina made of jelly

2007-09-26T12:47:00.000-07:00

Apparently, in Scotlandio, it is to be minus one tonight - so not so much a late summer, as a disaster of an autumn then.
Fairysparkle still pursues the new job idea - and is frustratingly in the position of being told she might, might might have an interview - and in between sends her CV off to random place like the bank. But banks who like to say yes, say, what, a creative individual in the money business - no you crazee woman, you too flouncy for the bank.
I was dared to wear as much makeup as I could last week by the pixies - and went into the back with stony expression, my face covered from forehead to neck in technicolour. When the pixies saw me, they were like NO WAY. My adoptable pixie, age 5, and mental as a fruitloop, was like -ARGH! I LOVE YOU, YOU LOOK BEAUTIFUL!

The rest of the pixies were like, please don't take us to the park, we don't know you.
The pixie known as Sugarboy, topped my level of freakery by eating half a pancake covered with one inch thick of margarine in one swallow yesterday.

Weather knows no bounds for little pixies and their evil masters (that's us, the staff, not their spirit guides), we go to the park everyday we can. And the evil masters sit on the swings and go - look at us we are working so hard - isn't pixiecare hard work, eh? We have an agency staff member just now, and she is like - but it is freezing. If four years of playing outside with hands like icy claws hasn't hardened my immune system in anyway, then what has been the point of my SVQ 2 in playing/working?

It's a bit of a funny dilemna right now - I want a job that maybe even uses some of my skills. It needs to be less physical than it is now - more sitting please, and less running around. But, I am aware I work with a stupendously good team. The kind of team where if you feel crap, they really do actually hug you. The disheartening thing is - if you have to fit a job around a disability -well, it's not like the market is teaming with opportunities.

The whole - how can the workforce become more adaptable to us disabled bodies, especially the hidden disability kind rankles in my head with not many answers. Or does it? See, me and my fellow knackered and creamcrackered friends have totally sussed it. We need an agency that specialises in helping professional disabled people get somewhere. See we're so paranoid that we had to be adapted round, that we actually work twice as hard to compensate. (I have read disabled people take less sick time than non disabled).

Me? I'd like a big badge that spells out the advantages of having lived half a life with half an energy supply.
'It makes me very very adaptable. So bendy in fact, I could fit inside your top pocket, even if it was a bit squashy.'

Hammered on the Sabbath

2007-06-17T08:31:00.000-07:00

When you have ME, it's like somebody took a big complicated computer game into your brain, and said 'Ok, there are about a million ways you are going to be affected by this blooming condition. In the game, a green super elve is gonna shout intructions at you all day, and if you miss them, then, huh, that's you, your energy is depleted to annihilation.'

It goes a bit like this. I slept long and then woke to find my head just mushy with all the energy that got lost during the week. Then I make sure I get my supplements in me with the rice cakes that seem to be the only food in the cupboard. They take a while to kick in. My friend arrives as an hour later I am attempting to make lunch that I can eat in the car, and hang out the washing. he is like, pleeese tell me if you are running late, to which I grumble irrationally 'pleeease help me then.' He and I hang the washing, and we go off to Comet to hand the paper work in for the fridge.

My paper work was left out in the sun by accident, and its all faded, meaning I have to have a very long chat to four different men, to sort out one dead fridge.

Well, our next stop is B&Q, and not too hard to guess, but its a flat NO for employment opportunitites. Fresh paint makes me throw up now. I go round in the scooter, looking all nonchalant coz although the concept of using motability aids has been discussed with my friend, I haven't actually gone wheelabout with him. So, me trying to look like, 'hey, what's a girl got to do with wonky legs' self consciously, and him probably just aware I'm a bit shorter than normal.

Several rounds round, and my driving skills are remarkably good for a girl whose range of allergy responses (am allergic to rather an impressive amount of chemicals in B & Q) range from nausea, to blast in your head sleepiness, to inability to speak proper. No scooter in here goes passed the speed limit of tortoise, so my head touching the wheel style driving is just another glasgow girl out on the razzle dazzle.

I was going to write a rather complicated analysis of the number of substances I am allergic to that I encountered in my day, by ironically - was too sick to do so. Needless to say - if allergies were beer, then today I was a nissed as a pewt.

Grappling

2007-06-17T08:30:00.000-07:00

she hesitates to
grasp the haiku,
coz she can't count and create too

haiku's not cool
makes brain feel like at school
missing play the fool

Intermittent blogging.

2007-06-15T16:11:00.000-07:00

Intermittent - that's ok if it's rain, only if it complies with smatters, or a smir. It is not ok with faults - then, oh my gosh, you just want the darned on and off offending item to be broken properly, so a nice person in a shop will say, oh, yeah, swap that.
My fridge is in that swapable state - it has a big sticker on it declaring - Write Off. The equivalent of, your fridge is so dead, it's super dead.

Um, yeah, trying to get another job. See, the thing is, this term I have done a lot of things I didn't think I could achieve on my own. Like interviewing, actual people, and then saying, please work for us. Like, being an employer, rather than an employee in my thoughts. Like, shaking a persons hands, and knowing in the first 60 seconds (it is all it takes), whether I'd choose that person or not.

Like, doing an appraisal on my own. In a cafe. It's where we do everything that isn't actually looking after little pixies. And being very brave and saying - is there anything I should change as a manager. Uniforms, was the reply. Is that it? I respond. Yes, I like working here, its a team.

Like, phoning social work so often I think they put me on speaker phone just for the laffs. It's her again! Give her another fax number to phone. Yeah, that's always funny.

Like, shouting at the council. But hey, lots of people do that. You are a pest, they say. Yeah, I am, pleeeease do the repair I need and then I'm outta your hair.

And the result of all that experience? On my job hunting? Er, nowt. Am I tied to forever wishing to work in a building whose roof doesn't leak?

The pixies all leak, but hey, they often do. That's what spare pants for. Though, as one little girl pixie informed me, pants are for peeeing through. Then, you sit down with the damp pants on, and then you pee again. So now you know.

Kudos building

2007-02-24T15:02:00.000-08:00

Still in the fever of initial enthusiasm, and also I am in the grip of my new project.

I am doing a writing course through the OU. Giddily enjoyable, after enduring last years course.

When I started the course, our first day was a day school, where I was amused to find our little group all looked like they needed some fresh air, and were potentially anaemic.
Odd, then to discover, there does seem to be a type. I attend a Laura Marney workshop on character building, and enter a room with the realisation we all look pale, and that a jumble sale approach to clothing has been adopted by all. Not one of us looks like we could pay our Council Tax (by that, I mean, on time, without reminders, maybe even venturing into direct debits).

So, I don't know whether to be relieved or not - I mean, I fit the look described - and we are all the most serious looking cerebral bunch.

Anyway, the course has come at a good time. If you name any arena of my life right now, it has a question hanging over - I do not know by the end of this year what job, house, lifestyle I will be in.

February has not been known to be a fab month in the year for many previous years. After the welcome mid-term break, I am frustrated by a sudden increase in needle sharp pains in my back, and fluey bone weary exhaustion. I go to work, knowing I am not ok, to discover in the tiny team that looks after the pixies, that all of us are not good well this week.
One of them is diagnosed with 50% chicken pox, and that's the moment I know I have to tell my boss I am not ok, because I start to do what all managers secretly do - I hide in the cupboard so people don't know I am crying.

When you work and you have ME, the fact you look better than you feel is your calling card into employment. When you have bills to pay, then you know that losing your job is going to mean going back through the benefit system. Deciding when it is that you are risking relapse by working is very difficult. I have had very little sick leave during four years of working - if it takes all my energy to stay in work, then that is what it takes.

So, I measure when it is time to say, I cannot come in today on the basis that if I don't my friends will shout at me. With temperature spiking, and floors wobbling on them as Iwalk being the final triggers - I take two days off. I get very vivid dream sleep normally, but this week I've had a full orchestra, french radio, dreams I'm not well, and last night - I removed all the pus from my third eye. You know, the one you have dangling from your pouch.

And I feel awful. My friends are alerted, and I have to remind myself all the time not to panic, this is just a blip, I will get better.

It is less durable as I have been wrestling constantly with a job I really enjoy, but is three hours a day of intense physical and emotional out put. I love the pixies, even when they say they hate me, think I'm mean, etc.

The employment situation for ME'rs is fraught with difficulty. How many jobs can you do for 3 hours a day? There are potential areas I could work in - but they don't fit my particular symptoms. Most people do not need to sacrifice their social life, and evaluate how they use each particle of energy just in case they use too much and risk their livelihood.

Although doing the writing course takes up a lot of those particles, it really has opened up an outlet. Highlighting actually, that if a job with less responsibility arose, then writing would fill the uneasy gap that goes 'but being in charge is rather good for the kudos.'

A recovering bloggist

2007-02-22T12:45:00.000-08:00

So, what you do in blogland, is you make a blog, and then you admire it for a while, and then you forget you had it, and a year later refind it.

I finished management, and then I got a certificate. Well, a letter saying, you have a certificate, and then when I get the real one, the nice shiny well done one, then I will parade it on my walls. I am a big believer in being given bits of paper to verify achievements.

So, in the last year, I could have had on my walls the following;

1. A Well Done, you survived being homeless certificate.

(Ok, the family I lived with moved, I was recommended to declare myself homeless. I did. In the kind of centre that has very thick plastic between the staff and the client. Then I was shunted into a high rise flat. The kind of high rise that gives you high anxiety, and shifty neighbours. Finally, I was decanted into a disgusting flat, so damaged by the previous smoker, it had third degree filth burns. I mean, we are talking SO BAD you wonder if you have fallen into a horror movie of your own life BAD.
Anyone else with ME will tell you, this is diametrically opposite to being a healthy recovery accommodation recommendation. You want to test this theory out - ok, well fill the flat with cleaning products, and new paint, and new carpet. If you are allergic to all of these items, you will be wincing by now. Man alive, what an impressive relapse that induced).

2. A Well Done, that was an Impressive Relapse certificate.

3. Followed by, a Well Done, you bought a flat and did not stay in the Pet's Wee flat certificate.

4. Certificates would be allocated to all who kept me sane, during that time, to some very special people. I lived in 5 different places (is this a cure for ME? No, I can reassure the tempted - it so is not).

5. A Well Done, you somehow got back to work certificate.

6. A Well Done, you got Divorced certificate. You get two certificates then, especially if I could find where I've put it. Not many people put this as an achievement, and avoid the, do you think I could slap this into my CV route? So, in a counter culture move, I might just put it up on the wall, and look blank when anyone asks about it. In the university of life, getting divorced is remarkably crap - makes you simultaneously both thicker and thiner skinned than you could have believed possible.

7. Finally, a Well Done, you finished the year in Spain, during the kind of disorganised and yet uniquely enjoyable holiday only those of my dad's caliblre can achieve.

In fluctuating style, I hope to return to blog again, and will endevour for it not to be one year hence.

Poetry

2006-01-04T14:53:00.000-08:00

Boot Virgin

Slipping into brown velvet silk
Soft cushioning

Uncomfortable caress of desire

price tag! price tag!

But, I want to play socks with you

lascivious whisper

but there are always the sales

A Fairy Says Hello

2005-12-30T14:58:00.000-08:00

Miss Fairy is learning all about MANAGEMENT, and it is melting her wee brain, so, ergo, the natural path to take is to blog.
The higher the human brain has to function in org charts and hubs and demographic trends, the lower the capacity is to communicate, so a healthy dose of blogging is my remedy. And also being able to appreciate Dilbert more, but for possibly the wrong reasons.

Rhodiola?
A fantastic herb that raises mood and energy levels by supporting the adrenal glands, without the side effects of St John's wort such as affecting other medication. Winter blues? This is a great herb for winter, and as it comes in capsule form - it is very low on the yuck factor.

Miss Fairy looks after a group of naughty pixies, and is a kind of hippy/childcare/weird cook/writer lady. She has been a very poorly fairy, who lost all her wings and sparkle for a long long time. In her own wee magic way, she will explore the path she followed to getting better via this medium.