Hiya,

Sorry I have been away for a bit. I have been having a horrific time with the RSD at the moment and that has culminated with today's (Mondays) nightmare of a day.

My pain levels have been really up lately, and I have also lost more mobility and am now hoist dependent for transfers (apart from the rugby guys , who just pick me up like a baby). I rang my GP 10 days ago in hysterics of pain and he agreed to increase my ketamine to 25mg 4 times a day (as well as my other stuff).

However, over the last day or two I have become far floppier and paralysis has kicked in. (hahaha, unfortunatly only the bad bits not the good bits - so I can still feel EVIL pain). I now can't feel anything but pain from my feet up to my chest and can't move from chest down. I am breathless and have pain on breathing.

Basically, it now turns the ketamine shouldn't have been increased. This happened 10 days ago and because of the half life I apparently now have an almost toxic dose of ketamine in my blood and the only reason I am alive is because I have RSD. Bizzare hey? (as it's a general anesthetic at high long term doses, especially when mixed with other things - but because of the pain...). The drs have been trying to push me into hospital, but I'm a stubborn sod and refuse to go in - though I have been told if I deterioate any more I will be straight in there.

It took 5 hours this morning to get any movement at all in my body, and that was after several hours of passive movements from Becks (my carer) as I couldn't even control my wheelchair, use my environmental controls or anything and even then the movement was just enough to control my wheelchair. And, I have gone totally floppy. Even in full tilt in my wheelchair my head is falling off the headrest and doing exorcist movements if bumped at all...(difficult if you live in Bath!)

Then in the evening...I was in the kitchen with some of my friends and nobody had bothered to strap me into my wheelchair properly (as I was in a high angle of tilt and thus leaning backwards about 30 degrees). I slipped to the side trying to move closer to one of my friends, Nick, and fell sideways out of my wheelchair straight onto my head on the floor. I then don't remember what happened, but apparently ended up in a form of floppy headstand and forward roll ending up smacking into a cupboard. It hurt SO much. I just didn't know what to do!!! Ended up having to get my carer to come and hoist me off the floor whilst I had hysterics. We decided I really should give up on today and just get into bed and I went into the bathroom (with my carer outside the door). And. Fell off the toilet and managed to get both my arms caught so I couldn't move an inch as I was trapped between support bars, wheelchair and door. My carer ended up having to break into the bathroom, and as soon as she moved the wheelchair I passed out on the floor. So had to be rescued (again) by my carer and friends.

I'm scared I will end up in hospital. I know if I tell my doctor that I fell and landed on my head and damaged my neck again then I will be straight in hospital but I just can't handle it. Life is painful enough without being in hospital (and I have an exam on Thursday). I also fear that the paralysis is spreading and I am having more problems breathing (though this may be due to increased pain).

It hurts so much - I have so much else to deal with at the moment - I just can't handle this much pain etc with all the other symptoms and just generally with exams etc. AND, I refuse to ask for special consideration with my exam (eg that pain/ falls etc on top of having RSD are destroying my chances of a first this year) because I don't want to take "advantage" of being ill.

Ok. update - Tues morning. Well, I have managed to be out of hospital, breathing is still partially compromised, mega mega pain, totally floppy, fell headfirst off the toilet again - looks like will have to accept using sling in the toilet as well which I am VERY anti. Having to be in bed because I just can't sit up and have had to have my cot bars bolstered because my fitting spasms have kicked in. Oh, and my left side has gone really really bad. My neck is so so painful and I....

I'm just so fed up with all of this. It just feels so unfair - and I know that there is absoloutly nothing I can do and nothing the drs can do to help. The only thing I can do to help is either a) reduce the ketamine dose - but, it's the only pain killer that helps or b) accept that I will not even be able to be in the toilet on my own. Life sucks, I just am so fed up and don't know what to do. It's bad enough being at uni - I love it - but the jealousy of all these people who are pain free, who can walk, who can be themselves and don't have to rely on others for the stupidest things - just is so hard to deal with.

Sorry for the moan I'm just so fed up

Love ya

Frogga xxxxxxxxxxxxxxx

Frogga, if anyone deserves a good moan now and then, it's you! Go ahead, moan away... we'll be here for you.

There's nothing I can to do help, obviously. Heck, I can't even help myself these days But I CAN listen, and sympathize. If you ever feel like moaning in private, lol, feel free to PM me. We could also use the chat rooms in here... they are waaayyyy underutilized (is that even a word?). Being able to real-time chat is a wonderful thing. Not having to wait for answers/comments is even better.

Hey there,

I've just now, right this minute, read your post...and I'm on my way out the door, dammit...just wanted to get right back to you and say HOLD ON !! Yes, jealousy, yes, yes, yes. Completely understand. Have you read the spoons piece? Right now I'd give you all my spoons and just stay in bed for 2 days myself....o god, where is that magic wand???
I'll get back properly later...
lotsa luuuurve xxxx

frogga,
I'm so sorry for what you are going through. I wish I could just put my arms around you and let you have a good cry. But as I can't, I'll do the best to send good thought and hugs to you. You are going thru so much, and you are still hanging in there, being an inspiration to us all. When I get feeling down about having rsd, I just read your threads, and then I kick myself out of bed. If you can get this far, I can get out of bed. Please take care of yourself. and try not to fall anymore.
Hugs
Mary

i'm so sorry, too.

i think the most frustrating thing about RSD isn't pain. don't get me wrong, because i KNOW the pain is horrendous and does terrible things to your body and mind. BUT! when i look at what you said about having too many things to do (like your test) - i think THAT is what is frustrating. not being able to do the things you want/need to do. I mean some days it's hard to even walk to the toilet, let alone get kids ready for school, fix lunch, do laundry, clean house... there are so many things that can't be done.

it's a hell of a life, but you are strong, frogga! it sounds so cliche to say "hang in there" but sometimes that is the ONLY thing you can do.

i will be praying for you extra hard today!

ang

Frogga...
Lots of prayers going your way.....
Jeanne

Hey Frogga...you moan all you want. You've earned that right. And, as far as feeling that you would be taken advantage of your illness if you asked for special consideration....please put that out of your mind...you do want you need to do to survive. As always, I'm in your corner and hoping things will calm down for you quickly. You will be in my thoughts...jeannie

You're an inspiration...

...now get better.

Hey everyone,

thanks so much for all your support, love etc it mkes this so much easier to deal with knowing that you are not alone!

Well - exams. That was fine - I finished a 2 1/2 hour exam in about 45 minutes (hey, 60 multiple choice questions!?! my A levels were harder) and I think I've done fine on them - the brain fog made it slightly hard but I fought through it.

RSD - I am still floppy from the chest/ shoulders down and still have the diminished sensation levels and the lack of movement. However, my joints are now being really stupid - they have tightned in a different way to the dystonia - with my dystonia once you learn how to undo a limb it can be stretched out a bit whereas with this it's just gone solid. How can I be solid AND floppy?! My legs are too weak to even allow me to be lifted but yet my carer can't bend or straighten them. This is all making me really upset as well because it is starting to affect my arms - yes, my RSD is already in my arms - but this is different - this is the floppy unable to move or feel things thing. Both last night and the night before I have had to try and deal with my arms just dying and stopping working. I had my arms checked out by one of my friends who is a first aider and training as a paramedic and apparently I had lost all reflex activity in my arms. It's horrific to sit there for hours willing them to work and knowing you can only move your eyes and that even if you could move that teeny bit you would be on the floor anyway.

I don't know what to do - I don't think I will be able to cope if I lose 100% in my arms - at the moment all I can really do with my arms is use my electric wheelchair, drive and hit things but losing that would be devestating to me.

I guess I just have to hope it is the ketamine and muscle reactions but it's looking more and more like the RSD deterioations I have had before. Damnit. I'm feeling abit sorry for myself at the moment because most of my friends are travelling around europe this summer - and though I was considering it it will now have to be written off and I am missing the end of year ball because I am not well enough to go and be able to sit in the car on the way home on sunday/ monday (my mates are trying to force me to go to the ball... but sometimes (very occasionally) my RSD sensible part of my brain insists on over riding everyone else with "if you really p*** the RSD off then what is going to happen?".

I guess this is my biggest fear. What's next? .....

Sorry if this is yet another frustrated email - I do try not to make them too bad - but...

all my love and thanks all!!

Frogga xxxxxxxxxxxxxxxxxxxxx

Frogga, I feel so darn bad for you. Here, I complain about this and that and when I hear what you are going through, I just want to put my arms around you and hug you! You are a very smart lady to have aced your test in 45 minutes!! wow! way to go!! please, Frogga, NEVER apoligize for going on with your illness. You have every right to feel pi%^$$ed off! No, I do not know what it is like to be in a wheel chair, no I do not know what it is like not to be able to use my arms, hands... I just want you to know.. you are very much loved and appreciated around here, and you telling your story, just amazes me that you still come on this board and give others your time, love and wisdom and your support. you are one very SPECIAL lady, and I just love and adore you!! Love and hugs, Frogga. Love, Desi