Tag Archive | Fibro

If She Tries to Resist, Assimilate Her!

Just a very brief outline of what was upsetting me yesterday, and will no doubt continue to unsettle for a while.

Last year when Mum moved in with us, I took her along to a Women’s mental health support group which was run by a national charity known as Rethink Mental Illness. I was surprised to recognise many of the members from the Fibromyalgia group I had previously been a member of, but had been uncomfortable with it being run by a mental health charity. (ME and Fibromyalgia have been dogged by inappropriate association with psychiatry for decades)

To cut a long story short, the group decided to break free of Rethink and set up on their own (there was actually a very acrimonious split but I won’t go into details).

It was decided that the group would amalgamate to be both a Fibro group and a mental health group and since we were all friends, we could divide the time informally and equally between the two. I thought it suited everyone.

But then, just after Christmas, there was a big, bad falling out and one of the members left/ was pushed out of the group, and one or two members made a complete turnaround and decided to ask Rethink to step back in, as though everything that had happened before and all the reasons we ejected Rethink were irrelevant.

I was given leaflets to re-apply to Rethink to be ‘assessed’ by them, and I filled them in but carried them around in my bag for weeks, really not quite comfortable about being involved with them again (not to mention the fact that I was unhappy about various aspects of the way the group was going, not least of which was the decision to offically call the group a Mental Health group and ignore the ME & Fibromyalgia).

On Friday, we weren’t able to get to the group and apparently they met with Rethink  without us. Rethink determined that nobody could be a member of the group anymore unless they were assessed and approved by Rethink and so we could no longer attend meetings until we got that sorted out. Not only that, but they stipulated that we were not even allowed to meet members of the group for coffee until Rethink had approved us.

Well, no.

Apparently the other members of the group all sat there meekly and said “Yes Rethink, whatever you say, Rethink, three bags full, Rethink.”

They seem to be honestly surprised and confused that I would disobey. They had not anticipated it and apparently everybody is reeling because I have broken the group up!

Of course I am very sorry and upset to have hurt or upset my friends. But by all accounts, I think these friendships must have been very weak and superficial if not entirely fake if they would submit to tyranny for the dubious promise of safety that Rethink offers.

I think I probably need to learn to say “no” louder and more determinedly at an earlier stage if I’m to avoid repeats. But in this instance, I think it’s all over and we need to stand our ground and be prepared to lose the group to Rethink. I’m not willing to submit to the malevolence or incompetence of a group that has already shown themselves to be untrustworthy and more trouble than it’s worth, and I doubt the others are strong enough to resist.

I hope I’m wrong and the friendships will survive despite the disagreement (and Rethink’s ridiculous rules). But somehow, I very much doubt it.

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Sudden Changes

mh-carers-fine

I thought I would post an up-date, as it has been a while and a lot of things have changed.

It became apparent that it would have been impossible to leave my mum on her own – we had done everything we could to try to get NHS carers, but no help was forthcoming, so she agreed to come back to Cornwall with me.

The timing could not have been worse, as we were just about to move house. My brother organised a caravan for her to stay in to avoid the chaos, but as it turned out she hated it and it was just one more thing for us to deal with, so she came back to the house and lived with the chaos.

We started to move house two weeks later (and we’ve done that gradually – paying for an extra month of rent was cheaper than getting removals, but it has meant doing everything ourselves which has been pretty awful), so it has been differing levels of chaos over the last month. It won’t be over and done with until the end of this month.

So now, I am a ‘carer’. In a way it’s my worst nightmare come true, but it hasn’t been as awful as I expected because on the whole, mum has been much better – happier and healthier with us than she was at home. The doctors here have been much more responsive to dealing with mum’s physical health issues than her (apparently incompetent) doctors back home. It turned out that mum’s lithium levels were almost toxically high and so they reduced it and a lot of the symptoms (diarrhoea every day, which mum thought was IBS, amongst others) have lifted which has made a huge difference to quality of life. My only criticism is that the GP made an ‘urgent’ referral to the Psych Team, and we’ve heard nothing from them more than two weeks later.

For myself though, I thought I was fine at the beginning – my ME/ Fibro seemed to be in remission after a pregnancy earlier on in the year, but over the last few weeks I was beginning to feel signs that the Fibro was coming back. I didn’t want to believe it so I tried to ignore it, stupidly, and now I feel completely burnt out.

There are lots of things that have made everything more challenging – my  mum is a completely different character to me. Whereas I am perfectly happy to stay indoors, mum is a real ‘going-out girl’. She would like to go out every day, and wants me to organise groups and dinners and day centres. I’m finding it a challenge to find things for her, but hopefully that can be sorted in due course. But in addition, mum hates going in the car, and since we’ve moved out of town, now we’re about ten miles from everywhere. That can’t be helped unfortunately.

So I’m just having to deal with it, and get over my natural tendency to agoraphobia. I’ve been pretty brave myself as well, going out to support groups and the like. Next time I’ll post some info on some nice places we’ve been instead of doctors and mental health centres!

I found the picture above when I googled ‘mental health carers’, and felt that it was exactly how I felt as a sudden carer. Hopefully it will get better (although mum doesn’t really want to be here, she forgets very quickly how unhappy she was alone, and wants to go home every day), and I plan to make sure I plug into support groups and resources for carers.

ME Merry-go-round

I’ve been waiting, since my Zombie Apocalypse, for something good, or significant, or interesting, or funny to share.

That’s not to say that nothing of import has happened – I had planned to write after the Paris attacks. When they happened, we were at a metal gig ourselves and even before I knew what had been attacked, I remember thinking that Islamists would imagine that what we were doing was somehow sinful, simply because they don’t understand it and can’t distinguish good from evil.

But I didn’t write because I didn’t have the energy to express the sorrow and anger I felt.

I haven’t had much energy for anything recently. I have had a basically unexplained illness since 2003, and since 2013 they have been calling it ME (or CFS, depending who you speak to) and now Fibromyalgia has been added to my list of diagnoses.

But my relapse has been so hard and so fast and so un-relenting this time that I have started wondering and asking questions about possible alternative explanations, so I have begun to do the rounds of neurologists and rheumalogists etc. trying to rule out MS, RA or Lupus.

Unfortunately, none of these specialists so far want to get involved with the ME/cfs/Fibro diagnosis. You shouldn’t have to bang your head up against a big brick wall when you’re ill but that seems to be the way of things in the NHS, particularly with this label.

When I do have more energy, I might write a bit about what is like to live with this illness. Mostly I just rant a little on twitter about the ‘symptom roulette’ that we experience.

But something I may not have mentioned before is guilt – there are so, so many ways in which I feel I am failing, and while I know it isn’t my fault, I am made to feel as though I am somehow choosing this – choosing to live in pain, unable to do the least work (yesterday, since we had visitors, I did my best to tidy, I cooked, washed up, and today I am a wreck, and can only *hope* the weekend is long enough to recover).

I hate living in a dirty, untidy house, and there is literally nothing I can do about it.

There’s a lot about the world, and my life, that feels out of control. My dreams have been weirder and more disturbing than normal, even for me. Music, and specifically Rock and Heavy Metal, is one of the few things that make me really happy in amongst all the mess and pain and sorrow.

So as much pain I am in, and as much as I feel wrecked beyond anything the word ‘fatigue’ can describe, the one thing I make sure I get out to is live music. I can’t drive there, and I usually can’t stand up for long. But if needs be, I’ll get taken in on a stretcher. Music, and art, makes life worth living 🙂

Life with ME

Pacing
Is a thing
We’re supposed to do –
Determining
At the start of the day
Which activities
To choose
And which
Must fall by the way.
No matter
That we only get to choose
Half a life.
Which half
Is worth preserving
And which must be
Sacrificed?
Can you pace your emotions
So you only feel half sad –
Mildly disappointed
At the injustice
Of being cut down in your prime?
There are worse things
To suffer
After all.

(c) Sharon Tootill (Shoshana) 2015