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.

Shock

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!'

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?

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.