I went to see my GP this afternoon with my hubby in tow. It was primarily to enlist her support in my DLA application - I've all but finished the form and need to get it off soon, and wanted to tell her just how much help I need, and what my mobility is like, etc. and my hubby came along to give his point of view, about how much he has to do for me etc. I also wanted to talk to her about my wheelchair.
She was totally brilliant! She's been a bit of an unknown quantity in the past on the subject of ME, because she doesn't know a lot about it, and I don't think that she really believes in it. This has very much influenced how I've been towards her in the past - I've always been on the defensive and allowed myself to feel guilty, and that maybe it really was all in my head etc. etc. However, this time, after filling in my DLA form, I realise just how real this is, and how disabled I really am, and I thought "I don't have to prove anything to anyone. I'm just going to say it like it is." (I gave her a copy of the Gorilla article, which I said she would find amusing, and might find useful for other patients, and help her understand why we don't necessarily always want to rush off after every "cure" on the market!!)
For the first time ever, I wasn't nervous about going. I knew what I was going to say, and said it. When she's got something practical to do, which she can actually achieve, she's brilliant - very down to earth, and very supportive and practical. It's only when confronted with weird symptoms etc. that she seems to be all at sea, but since I manage those OK by myself and she can't do anything anyway, I've decided just to use her for the stuff she's good at!
I gave her a brief précis of my mobility and care needs which I'd typed out, based on the DLA form questions, so that she's got it to hand when the DWP contacts her. She is very supportive, and I feel I've got a real ally in her over this. I asked her to support my request for an indefinite award - she said that might be unlikely, and my hubby chipped in and said "well, ask for four years or something instead of just two." I said "Don't put a figure on it, or it will limit them. If you only ask for the sky, you don't get the stars!" She laughed and said she'd do what she could. I told her what an ordeal it is completing the form, and my hubby backed me up on that, as he's seen me struggling with it over the past few weeks.
I then turned to the question of my Rolls Royce. Since I got it in the autumn of 2007 it's been absolutely brilliant and transformed my life. It's soooo comfortable, stylish, easy to manage and just great. The trouble is, I've now got a problem. I'm getting too fat for it! Oooh my goodness - and people worry about not being able to fit into their jeans lol!!! My Rolls Royce is now a Very Snug Fit, and while that's more or less OK for the summer, if I put on winter clothes, I shall need a tyre lever to get me in!! So I decided to ask her to refer me to the proper wheelchair people for an assessment and measuring etc.
I am amazed how confident I was about it. Before, I would have been too scared of being told that I didn't need one etc. etc. This time I just told her what I needed, and she was absolutely fine about it, and we had a proper discussion about it on equal terms. I was prepared, in case she was reluctant, to say to her "Well, I'm going to get another wheelchair anyway, regardless of what you say, because it's liberating and enables me to do what I want to do. Surely it would be better to get one that I have been assessed for, and which fits me properly?" But I didn't have to say any of it! she said "It's the OT who arranges all that. I'll get in touch with her, and she'll let you know what to do." She didn't know if a voucher scheme was in operation in our area, but she noted it down to ask the OT.
So, I am praying my socks off that I do get my DLA (even if I have to appeal, which is more or less 100% likely, given how things are going atm - but the GP said that in their practice they haven't had any problems with people eventually getting it even if they had to appeal) so that I will be able to afford a new set of wheels!!!
When this is all set in motion, I will need to contact the Yamaha people to find out whether my power add-on system will be transferrable to the new chair. If so, I can just put the Rolls Royce's old wheels back onto it and use it as a spare. If not, I suppose we'll have to be thinking of seeking out grants etc. (Maybe we should be doing that anyway, to help with a new chair?)
The next task will be to think of a suitable name for my new wheels!
I'll let you know how I get on.
All this has come about because I have now fully accepted that I suffer from a chronic condition and a long-term disability. I thought I already had, until doing my DLA form made me realise how much worse I am than 2 years ago, and I can't see any improvement any time soon, short of a miracle. I told the GP that I now accept that I am chronically ill and disabled with something for which there is no cure. I told her that I am OK with this, and that if she reads the Gorilla article she'll understand. She remarked how positive I am! I've suddenly got the confidence to go ahead and state clearly what I need and want, and am being really pro-active, and I'm not afraid of them any more. Tonight, I feel really great! (apart from my ME, of course!) It's like a great weight off my shoulders.