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.
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.
posted by Miss Fairy Sparkle at
4:11 AM
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