Other news

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.

Health and Safety

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?

Lunacy v lunacy

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 : ).

A new life

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.