I met with my MP this week to ask him to sign a petition requesting an inquiry in the abuse of people with ME (PWME; you can find more information here).
Unlike our previous MP, he didn’t sign but fobbed me off by saying he was already ‘signed up to something to do with ME’.
However, this isn’t the topic I want to write about today, rather I’d like to discuss a common response from health professionals and, indeed, my MP. When certain people hear I have ME, instead of listening, they proceed to tell me all about it ending with ‘recovery is possible you know’ or words to that effect. Recently I’ve heard this from my practice nurse, my MP andsome well meaning acquaintance.
Let’s have a wee look at this, according the research, around 5% of PWME recover. Yes, you read it correctly, a 5 measly % (I think it’s higher for young people however). The term ‘recovery’ is up for debate too; within the ME community, it’s widely believed that ‘remission’ is a more realistic outcome as those who have been described as recovered aren’t back to full health, just better than they were.
So why the insistence on reinforcing recovery?
Well. Firstly I think it’s easier for people to cope with; living with ME can be seen as a pretty miserable existence: not working, low income, limited activity, isolation, chronic pain etc etc. So it’s much more comfortable for you to view this as temporary.
I’m comfortable with it being permanent however and by focusing on what ifs devalues my life as it is here and now. Yes, it may not be the life I’d wished for but it’s a fulfilled and generally content one. Living with chronic illness has taught me patience, compassion and empathy in levels I’d not experienced before. I’m able to sit quietly with myself quite comfortably and whilst I may not be achieving things in the way our society values, I’m able to create beautiful things and pass on those skills when the opportunity arises.
Another reason for the recovery agenda is the infuriating insistence on being positive and because PWME are desperate for ME to be recognised as a physical illness we worry that presenting as anything other than happy, joyous and free will be used as evidence against this. So we smile sweetly and nod ‘yes, I could wake up tomorrow and be fine‘. Not ‘believing’ in recovery isn’t being negative, or even realistic (although, for me, I’m past the magical five year point when, for even Pollyanna’s, recovery is extremely unlikely). It just is and it minimises the reality of how life is for us.
I find all of this very tricky to write, back in the day I used to be pretty literate but I reckon what with the combination of brain fog and some neurotoxic medications my i.q. has about halved. Fog really is the way to describe it, it’s like wading through a thick peasouper in there where words are hiding and my train of thought skips away.
Right enough of that, here’s a little crochet catch up. I’m still hooking frantically and have made progress on all three projects.
Lilliana is looking very pretty and I’m up to date with her at part 7.
Similarly with Atlanticus, he’s unintentionally mirroring Lilly’s progress and is also at part 7
However, excitingly I even have a Finished Object: meet ‘A Spicier Life’ blanket which is a crochet sampler basically, having different stitches every few rows. The only issue is that this causes differences in tension so the edges were very wonky until the border was added; it’s still a little wavy but once you’re snuggled underneath hardly noticeable. I quite like it, the Nurturing Fibres Eco Cotton I’m working with for the other projects has simply ruined me. This is in good old Stylecraft DK so will wear and wash well, I see it becoming a trusty doggie blanket. Needless to say I’ve already a new WIP in mind…