Oh Bram, what would I do without you? You tell it like it is (in a really good way, it's a compliment!!). I am ready to go for it now. I want to be able to go out and like you said not be crippled because I've done too far on foot. I don't want to be limited to a five minute radius of the house. I'm bloody ready! I'm going to ring for an assessment tomorrow, OT should be able to sort it as they referred me to physio for the walker. The GP wasn't keen on the idea but that was a while back, before I had to get the walker and he can lump it.

Can I ask whether you have a one that you wheel yourself or a one where someone pushes you? OT said if I was offered one I would have to have the latter, but I have read they are a more bumpy ride and I'd like to be able to have the option of being independent when Baz isn't around. Chances are he will be with me mostly when we use it, but he is blind too so I'd be his guide-wheelchair which might make things difficult - maybe that would swing it in my favour to get one that I can push myself in though. I have no clue if they offer electric ones, I doubt it? Not a problem, I will just have to work out a bit so I can heave my hefty body around haha!

And oh yes, that's the line Baz got this evening. He's in the process of a long hot shower and shave now - one whiff of that aftershave and I'll soon get out of my near paralysis

Awww Kathy, you are so welcome

If your upper body strength is ok, and I cannot stress this enough.....GET A WHEELCHAIR YOU CAN PUSH YOURSELF!!!!!

I had an assisted chair to start with (in the very early days) because an OT told me I had to, and it was awful. I used it once, and felt like a lump of meat being shoved around. I hated the lack of control, and not being able to be alone unless I was 'parked up'. I understand that some folk don't have a choice, but I am still relatively young and my arms are in fairly good shape, which I know is a boon.

I rarely go out alone in my self-propelled one, but it means that in a shop (I LOVE big shops now ) I can go where I please, when I please, and not have to wait for someone else to push me there. I love having some time alone in public again, even if it has to be on a nice shiny store floor lol! When you get a bit of speed up it feels fantastic! And the arm exercise is good for you too... If your hands are sensitive I would get spoke-guards, and wear gloves too, at least to start with. It takes a while to build up the arm strength and hand toughness, but it is so worth the early aches and pains. I'd never go back to a pushed one unless I really had to. If you can afford it, ask for a voucher and go to a mobility store and get a lighter-weight one, it makes a big difference. I think we had to pay an extra £120ish on top of the voucher for mine. Even strapped for cash as we are, it was worth it.

When I am out in my chair I smile, I speak confidently to people if I need them to move or get something for me, and everyone has been really nice. I think if you smile and chat and make people feel good then they love to help you, makes them feel good too

You go girl!!! (and not just with the wheelchair ....) Good luck.

Bram

You all are great! This is one tough subject, and is one of the least addressed due to its nature. I am glad my wife totally understands the pleasure vs pain thing. I tell her all the time it is thee best of the best followed by thee worst of the worst pain.

It is good to see I am not totally alone in this subject. The meds really do make it more difficult then it already is. I will be taking from the ideas that have been talked about in this great thread.

I hope everyone can figure out a way to still enjoy life through all the pain

When it comes to the sleep thing.......I think that is the hardest part of RSD. You just cant feel good when you cant sleep. Your body needs the sleep time so it can try and heal. So nights are my worst time also. There is nothing going on, and it is tooooooo quiet! They seem sooooo long too

Kathy, my life is much improved now that I have a chair. I live in a condo where there are shops and restaurants downstairs. With my chair I can take the dog for biscuits at the Three Dog Bakery, have my hair or nails done, shop, or meet friends for lunch. In the condo I only use the chair on my worst days. Beyond the condo I couldn't be without it. Prior to getting my chair I was dependent on my husband to help me get around. I often would opt out of lunches due to the production it took to get me there. I have enough medical appointments that I depend on my husband to get me to (I do not drive because I do not feel confident of my driving due to CRPS).

I did have to go for an evaluation first before receiving the chair despite my Doctor writing up an order for one. That bit I find puzzling. I do have an electric wheelchair. It is actually, secretly, fun ... except, that is, when I got wacked in the head by someone's bag at the airport.

Be careful out there. You are much shorter when in a chair, and some people don't look but strait ahead when they walk.

Oh ... I find people are friendly for the most part, except the lady at the airport. The majority of the time someone will stop to help me with a door (I find many doors do not have the required ADA equipment installed).

You are all amazing you know. I haven't managed to get round to organising a chair assessment yet, awful lot of drama going on with family that's eaten up my time (and will to live lmao). I will though! I have so much to arrange and keep forgetting everything, I'm terrible.

Sleep wise I saw the physio as an intro to the PMP locally, and she has suggested she send me a sleep questionaire to determine if I have an underlying sleep disorder, which she seemed to think was likely. The sleep paralysis is ridiculous now, eight times in one night is getting too much. If I nap (which is becoming more and more inevitable as I am so excessively tired through the day) I am straight into an episode within seconds. Sometimes I can shut my eyes and start dreaming before I'm even fully asleep. This is getting a bit confusing as the other night at about midnight, I was certain my middle son had invited strangers into the house as I genuinely thought what I was experiencing was reality rather than the beginning of a dream. Something's got to give. Sex worked temporarily, but now great as it is, I am even sorer for it which means even less sleep.

Now the DLA is sorted, we're going to get a new bed - don't know how much that will help but after two nights of no sleep at all I am sure the bed isn't helping. I am having a flare and so the numbness and weakness in my legs is worse and my back pain is worse, meaning I just can't get comfy at all. We've been and tried out some mattresses in Ikea and think we've found "the one". Mad how excited I am over something that daft lol!

Well, sleep is just absolutely critical. There are so many nights when I can't sleep and I just wish someone would come by and bop me on the head with a 2x4! You just have to do everything you can to help you sleep - every minute of sleep is critical. Pathetic, but true!

I know you said somewhere that you tried the nature sounds and they didn't work - keep trying, when you get a bit of time. I had to go through about 20 or 30 to find just the right one. It's an ocean sound, but just the right ocean sound - the other 5 ocean sounds weren't just right We're just so darn sensitive that the smallest things can set us off! The others had too much volume variability (really quiet to a huge wave crashing in) or loud seagulls, or too long between the waves (you start to wonder if it stopped, then a huge wave rolls in). This one is just right, and I use it every night, and it really helps. Also, we're going to a doctor that practices TCM (Traditional Chinese medicine) and she's given us some tea to drink in the afternoon and before bed that seems to settle us down - perhaps try that? (unfortunately more time and money; so irritating!)

DJhasty - no kidding - sometimes people will walk right into you! But what's more irritating is how people will constantly cut in front of a wheelchair or scooter. I was with my son (he was in a wheelchair at the time; he uses a scooter now that he's older) at Disneyland once, and we were at a complete standstill at a narrow place in the street; people kept cutting in front of us. There was this lady at a cafe table watching the whole thing. She finally stood up and yelled "Would you people just let the little handicapped kid go THROUGH!" People stopped dead in their tracks, looked at us, and motioned us through