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

Hey

Desi - Thankyou so much for your sweet words. Thanks everyone! you have been awesome.

I am having such a bad day today - I am so frustrated and fed up. I got dropped twice again today. I don't know what is happening to my body and I hate it. The "paralysis" is getting worse and my arms are dying more and more. It has got to a point where they are so weak I can barely even press the "on" button on my computer let alone lift my arms from under the duvet or if they fall off the armrests on my wheelchair. I don't know. I hate it.

I am supposed to be at a Ball at the moment - but instead I am stuck in stupid bed, in stupidly evily huge amounts of pain, and I can't do this sort of thing anymore. I'm flat in bed in tears - all my friends are out at the ball partying. I told them to go - they said they were happy to stay, but I have NO choice about living with this disease - they do - and I won't let it ruin my friendships. It's just so so so isolating. Especially as today has been so bad that I just want to be able to get my mates to make hot apple juice with lemon, honey and ginger and then curl up in bed and gossip about something that isn't pain or just sit outside and swap ideas or jokes or just anything that is a distraction from THIS.

I don't know how much longer I can handle this. I am 21. I am at uni. And I guess another thing is that I have just realised how much worse I have got functionally/ physically in the year I have been at university.

It's so so hard and I just hate this so much. But there is no cure but persistence and time and things will improve.

Thanks so much for letting me vent.

Love

Frogga xxxxxxxxx

Hey there Miss Smartypants - on the other hand...you did get through the exam, which you make light of, but I'm sure - no, I know - that took a tremendous amount of will power, energy and determination. It's the spoon thing again - you used them all up on that, now you need a rest.

But you did really well, I'm sure you will get the .... just lie back and remember YOU *did that*. You need a quiet but engrossing film to watch, take your mind off that ball. Hey, they'll all have horrible hangovers tomorrow and you won't.

Oh yeah, make sure you're battoned down when they lurch in later completely wellied...at least there'll be tons of gossip tomorrow,
xxxxx all the best

I will sit by your bedside tonight, very quietly. Your victory in finishing out this term is far greater than the study efforts of all those other students put together. I am sorry about the price your body is extracting for this win.
And I am so proud of you for finishing out this term, and this year. You proved your mum quite wrong, didn't you.
Brava! Brava! Brava!

WTG on the exam, Frogga! w00t!!

Keep right on venting, hon, that's what we're here for. I can't even begin to imagine what you're going through, and at your age... it makes me very sad. I didn't get hurt until I was 30, and that was bad enough (I had two young sons). But to be your age, and missing out on all that cool college junk, must be hard as heck.

As someone who missed out on all that stuff too, lemme tell ya sumptin.... when you get older, you won't care very much. I know that doesn't help much right now, but you should know anyway, lol. When you look back on your college days, you'll look back and remember all the things you DID, not what you didn't do. You'll think about this past exam, you'll think about Dunk the Hunk... but you won't think about the dances/parties you missed out on. In the grand scheme of things, they don't amount to much.

I'm hoping to actually get some sleep tonight (fingers AND toes crossed), but if I can't, maybe I'll see ya in chat. I had fun last time!

Hi Frogga,
I just saw your post. (Sorry, but I don't get on the board every day.) I feel so much for you. It really upsets me that someone young, smart & determined like you has to get RSD & such a bad case of it! I really hope the docs can find something to make you better & that you can return to the uni in the fall. Maybe you would have gotten worse if you hadn't been at the uni. Do you think that is what caused the deterioration? If not, I hope you can go back. It sounds to me like you enjoy the uni and it gives you a diversion from the RSD. (And you are smart and belong there!) I think frustration is a big part of RSD for all of us. Next to the pain, it's what bothers me the most. I can't imagine how you must feel like missing the ball. I'm so sorry! I agree with Rogue in that, when I look back it's what I DID do & what I learned. But I guess that doesn't give you alot of comfort today. Oh, Frogga, I really enjoy your posts & somehow regardless of your pain & disabilities, you manage to look on the bright side & give me a smile most times. You are an inspiration!
Linmarie

Heya

Well, I thought it would be difficult for things to get worse - it really takes some serious effort on the RSD front! But, last night it managed it.

The RSD hit my right arm so hard. I was sitting there and my arm started twisting from the shoulder and then subluxed all my joints. Apparently my arm twisted to such a degree that my arm had twisted 270 degrees, my knuckles were flat on the top of my wrist, my thumb dislocated as did my little finger and my shoulder and my elbow hyperextended back.

The only management thing we have found is lots of muscle relaxents and alcohol mixed together along with keeping alot of pressure on the joints to try and keep them in place until the spasms calm down. Keeping pressure on the joints and stopping the spasms from doing any mega damage sounds easy - but even with Ben (a very strong rugby player) and Becka they couldn't fight my hand because the muscles had just gone like rock (but yet I am too weak to lift my arms? this makes no sense to me?!). (So imagine a scene of me flat in bed with the cotbars down whilst Ben and Becka stand over the bed with Becka putting all her weight down through the shoulder joint, whilst Ben stands further down the bed and tries to stop my wrist from breaking and then has to drop the wrist because my neck twisted so badly.)

Bad enough? ..... obviously not! I took aload of diazipam (40mg), baclofen (60mg) and my other meds etc to try and help relax that side - but it didn't work as I started fitting (even when I started taking all my tablets with alot of neat gin it still didn't stop the spasms). Apparently I was alternating fitting (full on entire body jerking with my whole body shaking) with passing out (apparently I would go grey, get "the look" and then pass out with pain, losing consciousness for a couple of minutes, coming back to consciousness then passing out again for a couple of minutes etc - apparently this continued for about 6 hours.)

It ended up with us ordering an indian take away because Becks and Ben decided they had used up about 1 million calories holding me down and decided to try strapping my arm to my chest - and 3 or more scarves later and some parcel tape they had wrapped my arm around and put my spinal brace on but even then you could see the shoulder joint trying to break my clavicle so started some "alternative" medicine (The uni security guards caught us - but one look at my face and my arm and they all went grey and said they wouldn't report us --> normally just having the smell on you is bad enough to have you reported by security - I must have looked pretty dreadful last night!).

Anyway after all that fun, a massive attack of the munchies (and realisation that I had no food and being vegan couldn't really go and steal anyone elses) and ended up eating Haribo which is the worst thing EVER!

Well, this morning my entire right arm, shoulder and my neck are all covered in deep bruises and swelling and lumps and it has completly died and REALLY REALLY REALLY hurts - but at least now we have managed to procure a decent set of slings for locking it across my body. The spasms are still there but have calmed down alittle bit as long as the arm is locked really hard across my chest, but.. I still have a dislocated thumb and a very worrying lump on my clavicle which I think I might have broken last night as it is definetly not right!.

It hurt so much I really really thought I was going to die from pain.

Artist: thanks hun!!, you are so right - it is the spoons thing. I think I may have used up about a month of my holiday spoons already and am about to use another months worth to get home!! It was quite funny as I was up all night in pain anyway so got the gossip as they came back.... LOL... (and being drunk they all forgot what they told me)..

Molly mcn: Thanks!! I did manage to prove mum wrong! woo!

Rogue: Thanks!! I am feeling abit better about missing it - apparently the access was horrendous so I wouldn't have had fun if I had gone and to be honest it was only a chance to hang out with my friends - and so what I don't get to wear a dress this year - I'll just make Dunk take me to the snowball at christmas!

LinMarie: Thanks!! There is no way that I will ever give up uni - as you say I could have deterioated anyway and it's just because i've been away from home it is going to be more noticeable. Uni is one of the main things that keeps me going and stops me from getting depressed because I love the work and it keeps me focused on that and not on pain and RSD (well, some of the time anyway!).

Thankyou everyone so much for being there for me!

Love ya

Froggsy xxxxxxxxxx

Froggsy,

You are always in my thoughts and prayers!! XOXOXOXOXOXO

Sorry to hear about what's been happening... ((HUGE HUGS!!))

Love you, hun, and I am always here when you need me! ((hugs))

I have been using too many of my spoons, too... I know how that goes.

stupid spoons IHH..... Why can't I just buy some off of someone? that would rock...

feel better hon!!

love ya

Froggsy xxxxx

you don't have to buy spoons--I'm sending all mine to you. I have the day off and I'll rest and you use mine to help you recover!! What a night !!!May God bless you with a pain free trip home--you deserve it!!! You are always close to me in thought, when I think life isn't worth living I think of you and how you still have humor about what life handed you--THANKS Carose