Hey you guys! Oh my word, I can't believe I've not replied to your post SloRian, I thought I had! I'm really sorry, my brain is total mush!

I've had appointment number 2 with the physio today and I am really pleased with how it went. I am shattered now though! My twin sister came with me which was really kind of her - I've been fainting a bit you see and this time Baz couldn't come with me. I think it was good to have her there as she heard a lot of stuff that I hadn't bothered the family with because it looks a bit "woe is me" if you get me.

We started by me telling her how I've been (migraine/emergency GP/etc) and then going through the sleep diary. She wants me to keep trying with the sleep hygiene for a few more weeks before putting me in to see the psych if the sleep paralysis doesn't go away. I even told her the freaky nighttime thing wot shall never be mentioned again outside of the sleep and sex thread. My twin covered her ears for that bit

Then went onto what's going on at the minute, we talked about my appointment with the SCS surgeon tomorrow and how I feel bad for going over the pain doc's head, but she agreed with the GP that if the neurosurgeon suggested it it's my body and I should be allowed to talk to him for more info. I also mentioned the wheelchair assessment and she said I will definitely need one for pacing my walking. She thinks it's a good thing for me, so it's a relief that I don't have to feel over the top for thinking about it. She has given me the details for local loan of a wheelchair for until the assessment comes about as it can take weeks here. So looking like I may have one by the end of the week.

Then she went through the pacing idea, and at first I thought I had all of it covered in theory if not in practice but she added a fair bit of info I hadn't known about, such as what my five minute break IS being a bit more flexible. She said we all do four basic things - walk, stand, sit and lie down. If I am walking and have to have my "rest activity" I can pick from any of the other three. She has suggested no watching telly as I'll get sucked into a program even if it's all rubbish on the telly lol, it's very true. If I'm standing to iron for example, I don't have to sit down or lie down, I can walk around (eg. pottering about putting clothes away) for my "rest". So it isn't as black and white as I thought. The walking will be the toughy unless I get the chair sorted quickly. I also have to have everyone on board, so no more hiding how bad it is from family.

I made a comment about how I needed to control the pain better and she said something that I didn't expect - which was that if I focus on controlling pain I will not ever win, but if I focus on controlling my life, my pain will improve alongside it. She also said it won't ever go away, and regardless of how less frequent the flares will be, they still will come. Just not as often and not as bad, HOPEFULLY. Now not sure whether I go in for the Chinese proverb style of the first comment but it does make a bit more sense than I would normally give it credit for lol.

She's printed out loads of stuff on CRPS and we've talked about Bath again as the gold standard. The plan is to try things locally for now and then see if I want to go there.

I also discussed medication with her - not the actual medical stuff but the implications of not being well managed. She said her main concern would be if they change my meds now they won't know if this PMP is working. She also said though that if I really can't cope I should be managed better. The thing is, I don't know of any alternatives at the moment anyway so I think I will stick with the devil I know for now and see how the PMP goes - it could be that my pain comes down anyway from that. If it doesn't or the pain gets in the way of the PMP pacing etc, then I'll have to try and get it reassessed.

I am absolutely shattered now - it's funny that after all this talk of pacing, I had to walk there and back on sticks and am sore now, but it's all about to change once the chair is sorted, innit?

Tomorrow - Mr Jenkins at the RVI for the SCS talk. My GP and another person online both said something similar when I said I wasn't hopeful I would be considered fairly without being put forward by the pain clinic. They both said if he wasn't able to be flexible on that, I wouldn't have got an appointment, so I am hoping for a good, objective and fair discussion on the possibilities, even if it's a total no. I just need to know. xxx