It’s been a curious week. I’ve had my first CFS/ME support session; I’ve had an attack of the Raging Hormones; I’ve exchanged on a house and I’ve been doing all the bits that follow on from that (including rather excitedly buying a cushion).
The CFS support session wasn’t as bad as I thought it might be. I have to attend two compulsory intro sessions, where nice healthcare professionals tell us all about having CFS/ME and what changes we can make to our lives to effect a recovery, which for some people is full, for others it is partial.
I immediately felt like the class swot because a) I’d read the book they had on the side table, and b) I have been implementing almost everything they recommended over the last year.
They told us about some of the risk factors for CFS, which interested me.
A history of glandular fever? Tick. Had it at uni, didn’t know I’d had it, showed up in subsequent blood tests.
A major disruptive life event? What, like a divorce…? Tick.
Then they mentioned personality traits. I was curious. How could your personality put you at risk of this stupid illness?
“We find people who tend to be perfectionists, tend to hold themselves to very high and sometimes impossible standards are more prone to CFS…”
Oh shit. I squirmed in my chair and blushed slightly. Hearing the words was a bit of a slap. It brought involuntary tears to my eyes – sadness that my pursuit of high standards for myself had in fact helped to bring me low.
However, having strict expectations of myself not to cry in front of a room of strangers, I kept things under control…
The session was well-done and informative. I got to meet three other people with CFS; two who were very much worse off than me, not working, mostly resting; one who like me was managing to hold a full-time job down, but couldn’t get the rest of his life sorted out.
I suppose it was nice to feel like I’d put myself on the right track and had had the wit to work some of the stuff out myself. I tried not to be an irritating know-it-all when I spoke about what had worked for me. I also felt guilty that other people clearly had it far worse than me and probably resented how much I could do – but that for me has come as a result of working at it slowly and steadily and refusing to take it lying down.
Interestingly the healthcare ladies informed us that too much rest was as bad as too much activity, which was a new piece of information.
Overall it was nice to meet some other people who completely understood what was going on, had suffered the same brain fog, the same random sore throats. It reminded me to be grateful that I don’t hurt all over, that I can work and be independent. It also reminded me to consciously think about what I do, to carefully increase what I do instead of just doing something, to keep on smoothing out the ups and downs to get a steady gentle increase.
I was pleased to hear the word “recovery” used because it gave me hope that this won’t be forever. One of the ladies lives just around the corner from where I’ll be moving to, so I will make sure to see her because she feels quite isolated and we can grumble about our illness without annoying anyone else.
Next session we’ll be looking at sleep and rest and sleep hygiene. Then hopefully we can get to choose to go to sessions on areas that specifically we need help on (diet and exercise are my two – I really want to start dating again once I move).
So it was helpful, not dreadfully patronising, confirmed I’ve been doing the right things.
Two days after the support session I got hit with an ocean of hormones. It happens maybe every three months or so. I never see it coming because I have an IUS which keeps it all pretty much subdued, but every now and then I turn into a seriously grumpy extra-tired human being, and the CFS just seems to magnify the awfulness.
It didn’t help that I had been really really really busy at work last week. I had a day in Bristol then a report to write up by the end of Friday. My boss had a million things on his plate on Friday and was unusually terse with me, which put my back straight up when it just didn’t need to be. I got upset, a very simple thing spiralled into a huge mess, I got more upset and defensive, I went and had a cry, then came back and used every ounce of my willpower to write a calm and breezy diplomatic email to sort things out, when I felt neither calm nor diplomatic, and actually had job search pages open.
Everything had calmed down by the end of the day, just about, and we had a conciliatory phone call, but the evil hormones were still lurking.
On Saturday morning I fell out with my mum because of them, failing to bite my lip when I should have done. I’m only human, I told myself afterwards, as I bought a bunch of sunflowers by way of apology.
On Sunday I went out with FF and her partner and their baby, and I struggled to do lunch and a drive and a National Trust visit. I’d normally be fine doing those things all in one day (progress…) but no, I just felt fairly awful. We ambled and it was good to be out in the sunshine but I did mostly feel like a zombie.
It didn’t help that by the end of the day I had a monstrous headache. Oh, it was awful. Like someone had wrapped my head in a vice and also stuck tampons up my sinuses as a bonus treat. Thudding pain.
I retreated to bed and was amused by my usual correspondent for longer than I thought I’d be able to stay awake for. Mercifully he kept the chat about wondrous dates and perfect women to an absolute minimum, which was fortunate because I couldn’t stomach any more, reliable and gracious friend that sometimes I am not; wondrous and perfect I am never, and occasionally rather sore about it. My ability to deal with that in good humour nosedives proportionally as headaches increase, but happily all was humour and light silliness and amusement, and I went to sleep smiling.
Blessedly the damn headache had shifted this morning and left me with that slightly disconcerting euphoria that follows when a stinking headache clears out. Perhaps it was a migraine? Who shall ever know.
I beavered on with work today, whilst Scrabbling more than I really ought to, to my great entertainment and equal bemusement and bafflement at playing someone who is consistently better than me. It’s terribly good for me, not winning all the time. It makes me work harder and strive a bit, and it’s highly salutatory to be reminded that I am not all-conquering as regards the English language.
My stance on competition is always thus: if it becomes quickly obvious that I will not always win, there is little more rewarding than a worthy opponent. And so it is true.
I also observed a post on Facebook which made me pause.
A friend wrote that “various people had asked what our son would like for his birthday, so here is a link to a wishlist on Amazon”
This doesn’t sit well with me. It seems …a bit …grabby? Sure, I ask my parent friends what their children might like for their birthday, and I’m sure other people do, and they just tell me. If they’d gone as far as making an Amazon wishlist I’m sure they would just verbally tell me about it, where to find it, or maybe even privately email me a link.
Posting it on Facebook looks awfully like “hey! Attention everyone! Buy my child a birthday present!” – even if it isn’t intended that way. It looks terribly greedy.
Luckily for me I’m a selfish bitch who largely ignores the children of people I rarely see (and frankly, I struggle to remember the birthdays of the children I am interested in remembering about), so I will be feeling neither guilty or awkward about COMPLETELY IGNORING the post.
Not relevant! Next! More Scrabble!
There. That’ll do as a round-up, I think. Here ceases the directionless rambling!