captain91: (Default)

I didn’t think it had been this long since I updated, but apparently I’m extremely slack lately!

This all still feels so weird, it’s hard to put into words, but it’s kind of like I still feel it’s a dream and will get ripped away any second. Under no stretch of the imagination can I say I miss the RSD though! It’s peaceful without it, but I’m struggling to keep my concentration in nay one place.

In the past six years a very good nights sleep for me has been three hours due to the pain. This pattern seems to have been deeply imbedded in my as my sleep pattern hasn’t returned; but I do keep falling asleep on the laptop! I get logged in, set up, then while I’m waiting for something to set up I nod off (really annoying!). still, I suppose I shouldn’t complain as it’s increasing my sleep time.

 

It took the best part of a week, but my physios did finally get out. They’ve been coming every weekday to do work (shock, horror, since when did the NHS do what I ask?) to do general work, but all my other problems are still making it tediously slow. We’re waiting on funding for a specialised wheelchair for me now, knowing them it’ll take months though, not good when I want to be up. If it’ll be better in the long run though then I guess it is worth the wait, it just really annoys me to know I can do something but not have the equipment I need.

…I suppose I could always auction my father off to pay for it  lol, but I think I’d have to pay for someone to take him away!

 

Going back to my physios they are both male, but unfortunately weedy and ugly (send me a cute physio and I might just work harder!). I’m going to get pictures of both of them with or without their permission so when I nag about them you can put a name to the faces. At the moment my main grump about them (apart form the fact that Barry seems to have a radar so he can put his finger in a sore on my ankle every single time he moves me) is that they brought me a virus. I hate that I seem to catch every slight thing that comes in the room and get a strong bout of it. I hope my immune system picks up sooner rather than later or I’m never going to be able to go out in crouds.

 

 

And finally I’m a chicken, it has been scientifically proven!!! I wanted to send an email to a professional dancer on strictly come dancing called Brian Fortuna to say I loved his dancing and thought he was great. He also specialises in wheelchair ballroom, and I’ve head over heels fallen for him. I wrote out the email, with my appreciation and how I’d love it if I was well enough to go to the live show next year, put it in the web form on his page, filled out my details then chickened out and ran for the hills. I do that far too often for my liking, I blame my mother’s genes!

…So, I think I’m probably crazy to be asking this, but any non-chickens in the area are welcome to do what I couldn’t, let him know he’s an inspiration, and point me out where I’ll be hiding nervously under the settee! I admit if I got a reply for my birthday I’d be on cloud nine, but that would just be an added benefit.
I'm not sure if i'm hoping someone will take this bait or dreading it... but i think i'm hoping, or i might have to pull my finger out and use my own guts

Ok, I’m officially rambling so I’ll now make myself sign off

I love you guys

captain91: (Default)

Erm hi *waves*

 

Well I know I don’t use my blog for much (I hope that’ll change soon though), and don’t know if anyone actually reads this, but I had to write this up.

 

As some of you will know I have a condition called Reflex Sympathetic Dystrophy (RSD) that has been increasingly debilitating for me over the last six years, leaving me bedbound for at least the past three. it compromises of constant pain that feels like you are being boiled alive and repeatedly hit by heavy boulders, along with muscle loss and weak skin as movement lessens. It has left me with no use of my right leg with my knee and ankle stiffened so you could draw a straight line along it from my hip to my toes.

 

Anyway, I have had this living hell day in, day out with absolutely no respite from it. Not for one measly second. And then I woke up this morning… well I think I woke up, although I may have been sucked into an alternate reality, or a hallucination! The RSD is vanished, every last speck of it is gone. I still have pain from blisters and sores, but no RSD in sight. I haven’t moved yet, I’m scared it’ll suddenly come back upon me, and I have no idea what to do while it’s not here. I feel strangely sick and dizzy, the sudden change just makes me feel really odd. I have to keep looking to see if my leg is still there!!!

 

There is a thing that can happen to RSD patients called remission where some or all of the RSD goes away. This usually happens in the first couple of years though if it is going to, and there’s nothing to say it’s permanent. It could come back in an hour’s time, a week or even a decade. This is making me very uncertain of what to do, do I keep still and enjoy the lack of pain, and hope it stay away? Do I try to get some of the things done that I need to? If it stays away at what point do I decide to start doing things rather than just waiting? I have no idea and feel really lost, so anyone who wants to put in their view would be welcome.

 

Finally, I apologise for possible bad spelling, as I hope you can understand I’m a little scattered!

Profile

captain91: (Default)
captain91

January 2014

S M T W T F S
    1234
567891011
12131415161718
19202122232425
262728293031 

Syndicate

RSS Atom

Most Popular Tags

Style Credit

Expand Cut Tags

No cut tags
Page generated Sep. 25th, 2017 08:08 am
Powered by Dreamwidth Studios