Monday, March 12, 2007

A summary

I'm afraid this is copied and stuck together from bits of other online journal entries (entries at these are mostly locked for password-based reading only), since I am too tired to rewrite things in more interesting ways. Such is life. :D

The Girl and I had an assessment from a social worker for care services today. He's going to recommend that they provide me with daily care to take the strain off The Girl, who is caring for me fairly constantly at the moment. He was marvellously understanding. Although he didn't know about FMS, he knew enough about ME/CFS to see the similarities between the conditions, especially in terms of the wildly fluctuating symptoms that go with both illnesses - so he took us very seriously. It was very good to get some reassurance that I am not malingering and really do qualify for care and support! However, the whole thing is now making me feel really low. It's fantastic that I should (all being well with the assessment panel) get regular care from social services. I didn't expect to qualify, though. And I feel like I don't deserve it. More than that, I feel like it shows how much I've deteriorated - and that I've given up altogether. I feel like I've fallen such a long way in just a few months. I was a successful teacher, my career was going places, life was good. Now I need help with being looked after on a daily basis.

In addition, I feel horribly guilty because the assessment was supposed to be more for The Girl than for me, to assess her needs, but it became very clear that there was very little they could do for her. Sure, getting me some outside care will help her a great deal and mean she can be getting on with other things when she would have been helping me shower etc, and will also mean that she can go away or go to university without panicking that I'm lying fallen on the floor somewhere... But I think she feels quite neglected in terms of her needs. And I don't know how to be of any support there, since I'm the problem. (However, she is looking into carers' services/voluntary support, so there may be possibilities there.)

Meh. I'm just ranting. All's OK really. The wheelchair seems to be improving my energy levels by at least 30%, which is amazing (and, to my mind, confirms that if I do have CFS as well as FMS, then the CFS is pretty mild - wheelchairs shouldn't really be helping me that much - but I'm happy with whatever improvement I can get, regardless of how I get it). I'm having many thoughts about access and attitudes, of course. I want to start a website with some funny (well, perhaps!) stories of access and attitudes in London (or perhaps more widely across the UK). If anyone wants to contribute, or knows anyone that might want to, then get in touch! It's not something I can achieve on my own - so come on board, people. :)

In a general summary of my progress: I'm walking every day. Still stuck at about 100 metres, unless I'm silly and push it further than that - my physio wants me to build up to more, but I think I'll stick to what I can do for at least the new few days, because I'm so enjoying the slightly increased energy from the wheelchair that it seems a shame to ruin it just yet. Pain levels fluctuate, but are mostly tolerable with medication. In terms of fatigue, I am learning to live with a new, if very reduced level of energy. Enough to measure out my coffee spoons and do tiny things. If I can read a few pages of a book, watch a TV programme, take a shower and talk to The Girl, it's a reasonable day and I'm happy. Good days involve having visitors or maybe even going to see people if they come and pick me up. This is all fine. There are people with far worse levels of fatigue. Acceptance and pacing is beginning to work for me. No more worrying about it. From now on, just coping.

4 comments:

Lisy Babe said...

But I think she feels quite neglected in terms of her needs.

I'm slightly ignorant of the needs of carers, having never filled that role, and knowing I never will (at least for my parents, what with them having the funding for a 24/7 live in PA and all).

But... surely if you're getting you're assistance needs met by social services then she ceases to be a "carer", her needs as a "carer" then vanish and she can go back to being just your girlfriend who only watches you in the shower for fun and not for fear of you falling out of it?

Oh, and, a piece of advice from someone who grew up with "carers" from social services coming in and out of their house - don't accept the social rejects they'll try and send in; get direct payments (beg if you have to) so you can employ people you like and are good at their job.

birdychirp said...

But I think she feels quite neglected in terms of her needs.

What Lisy said, mainly. But also- maybe its not 'carer' needs she has but more general the person I love is seriously ill and I want to help and don't know how needs - in which case counselling of some sort.

There's also http://www.regard.org.uk/ who may be of use?

lilwatchergirl said...

Lisy:

But... surely if you're getting you're assistance needs met by social services then she ceases to be a "carer", her needs as a "carer" then vanish and she can go back to being just your girlfriend who only watches you in the shower for fun and not for fear of you falling out of it?

Hee! :D

In theory, yes. In reality, she does so many little things for me throughout the day that we just won't get covered by care packages, that this isn't going to be the reality. However, yes, her caring role will be lessened, and that'll be very good for us both.

Am looking into direct payments. Need to get approved for care first... We'll see what they say next week, when they get back to us about that. Cheers for the advice!

Birdychirp: I think it's a bit of both those things, yep. We're both looking into counselling. Thanks for the link - looks interesting. :)

Lisy Babe said...

I don't recommend Regard - I joined once, paid my annual membership fee and got not even so much as one sigle Email newsletter for my money.

Totally not worth it.