Nobbly Bobblys

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

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

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

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.