Heya...
newest issue is...
I have no equipment! Social services apparently thought I would somehow manage to be able to carry the hoists down with me and my bed - I pointed out that as it was it took my mums van, half my friends Jeep and my car to get all MY stuff home and my wheelchairs without working out how to fit an electric hospital bed, pressure mattress, hoist, slings and all the other rubbish that makes up my life into the car.
So. As my care has fallen through it now means I have no carers, mum is at work full time AND no equipment meaning that I can't get any carers in to work for me unless I am happy to be bed and bed pan bound until social services can provide me with the equipment that I am supposed to have. (I can't really be lifted at the moment because of the paralysis and my shoulder and as I'm not supposed to be lifted anyway because I'm 100% unable to weightbear with two destroyed ankles and osteoporosis no agency carers are allowed to lift me). Therefore I am now spending 18 hours or more a day in bed which is horrible if you can't turn or move at all independently, I am getting so frustrated especially as I'm in "my" bed - a water bed, which I just can't move at all on. I was in tears by the time mum came home through the frustration of being really uncomfortable and knowing that I have now got (another) pressure sore because of being in bed on the wrong mattress for too long. Agh!!!! It is so frustrating.
I keep telling myself to pull myself together and just get on with it but it's so hard. My shoulder is still not right and even having it strapped is really painful, I am going to ask my neurologist if he can check it when I see him next week because it has now risen about 3 inches higher than the other shoulder and collar bone. Stupid pain is so frustrating I just want to scream from it. However, on the good side, the burns I got from the heat bag - no dressings needed anymore!!
they have healed okish! WOOHOO!! at least that's one thing I'm rid of!
The paralysis is continuing - I am still pretty scared by it but am trying to move on with it. I'm not going to let it continue to destroy my life. I think I'm just going to have to accept that this is what my body is doing at the moment, and although it's unfair, and horrible, and scary the only way to control it is to try and get used to it and retain as much independence as I possibly can - but that's going to be hard until I can get proper care in.
With the carers it's strange. I guess I hadn't really realised to what degree I had deterioated or how much help I need. I'd always told myself that I had 24 hour carers when I was at uni because I was away from home, I can't transfer/ go to the bathroom/ feed myself/ dress myself/ wash myself/ cook etc and so they'd be doing the "mum" bit with abit of care. However, suddenly I realise it's so much more and it takes up so much time. I have to be turned at night, repositioned in my wheelchair, have my splints on and off and on and off and on and off.......... meds, stretches, physio, someone with me whenever I leave the house. It's even more so now when I realise I can't change a radio station because I don't have environmental controls at home. I can't answer the phone, I can't let people in, I can't control the animals. It's scary realising how much this has impacted me and my life and I guess I mentally gloss over it, but being at home really make me realise.
Also - any suggestions. I am bored to tears. I can't use videogames or hold books (not until I move into the other bed). I spend alot of time "resting" because of the stupid migraines (Still have the amazingly horrible sunglasses to go with the horrible migraines!) and have some books on CD which are copied to my hard drive so I can turn them on independently. If I have my headset on then I can use the computer. But that's it. So - any ideas for trying to break the monotony of pain and the frustration and just... general AGH levels! I really need some form of hobby or something (shudder, the thought of turning into someone with...... HOBBIES! scary thought!).
Also, I need some thoughts on how to survive this weekend - Mum is working two 12 hour shifts (8am - 8pm both days) and I will be on my own (as no hoists delivered). So any ideas how I will manage? at the moment it looks like we may end up just having to catheterise me for the weekend or something.
Molly: as ever, thanks babe! S's fits are very similar to mine and I agree - they are horrible! My sister hasn't been home since I got here and is too much in "love" with new boyfriend to care that I am stuck in bed for 18 hours at a time because she can't be bothered to drive the 8 miles to our house to get me sorted. It's VERY frustrating!
Liz - thanks babe - your walking stick sounds awesome!! one of my wheelchairs is barbie pink - hey, disability isn't a must, it's a fashion choice (well. that's how I choose to look at it!). I had pair of amazing bright green crutches when I was on them and they ROCKED! they were so cool! Also my splints have always been painted by artistic mates so they look awesome! What type of dog have you got? I know what it's like - I have 2 dogs and now 4 cats and they all think that slobber helps!!!! they are so perceptive though! I just wish that they didn't think that by sitting on the most painful part, or licking it, would be the most helpful.
Artist - meant to say this - with taking the tablets with alcohol we were attempting to make them work more effectively without increasing the meds because of the ketamine issue. However, it always makes me feel horrendous the next day and makes the spasms/ cramps/ pain worse - but at times you need something to increase the potency.
Thanks Moonstar - how are you? did you get the CPAP in the end? I really hope they managed to help you with your sleeping problems.
Mary - Thanks! I use all of you lot as inspiration to kick me in the butt mentally when I get lazy or if I am being miserable about the RSD. For any of us to do anything at all is amazing, the fact that many of us manage to have semi normal lives is just amazing!
IHH - what is there to say? love you babes and hope things improve for you soon, thanks for being there!
All my love and hugs and thanks
Frogga xxxxxxxxxxxxxx