Well.... one orthopeadic nurse and several first aiders later....

it's not broken! WOO!!!

Just mega sore, RSD + severe bruising etc. It's just RSD makes it SO hard to tell!

Thanks everyone! I fear though that this may be the last nail in the coffin for the OT's - It probaly means I will now have the increased indignity of being hoisted over the toilet instead of a Frogga/ carer dance (literally, as my humerusi have locked to my ribs through spasms they either try and squeeze their arms through mine or just hug me, grab me by the back of my trousers and throw me to bed/ wheelchair/ toilet.

I had a mobile hoist delivered yesterday and am being properly "fitted" for it this afternoon. I'm scared. I'm fed up of going downhill. I REALLY don't want to be hoisted but I don't appear to have any choice in the matter, since coming to uni in September it has got to a point where either my carer or the boys have to lift me everywhere, from toilet to bed, to car etc. It's so frustrating and depressing. Oh well. At least the boys are hot as! (and hoisting will probaly mean I am not dropped onto the floor weekly...).

Thanks for all your love and concern - you are all truly great friends!!!

Love you all!!

Froggsy xxxxxxxxxxxxxxxxxxxx

Hi there Frogga,

Big, big virtual hugs. Just looked in before retiring for the night and got your news, good and not so good.

I'm so relieved your leg isn't broken, pheeewww, last thing you needed. And....well, maybe you won't like to hear this, but I suspect you may find the hoist a good deal better than being dropped on the floor, squeezed to death, thrown about, banged against bathtubs and generally painfully manhandled. No?

Apart from the fact that the hauling and mauling must hurt like hell on the RSD front, it can't be good for all those loose joints of yours.

But, of course, I completely recognise the indignity of the hoist (unpleasant word that, hoist, isn't it? dunno why..), and the psychological lowering you must feel, though, I really do. It could just be a temporary necessity, uni being the basic survival course that it is - really, anything that eases life for you physically right now, can only be a good thing.

Mentally, well, I think if you look at it as expedient for the present situation, perhaps that may help. Also, I just want to say that if you feel that the uni living arrangements really are contributing to a general decline, I hope you won't feel you've got to continue, just to prove a point.

There are other ways of doing university courses and it would be daft of you not to at least consider alternatives. I just don't want you to feel trapped by your situation at all - more than you need feel, anyway. Remember, you have to work several hundred per cent harder at everything than those around you, just to stay in the running.

On the other hand, where you are now you do have those hot guys on hand, so to speak, 24 /7, which I imagine might brighten the grey cells a little in the course of a day, LOL.

Don't be too depressed about it (try not to be, anyway) - that hoist thingy could turn out to be one of those weird things you end up saying "how ever did I manage without it?!" Give it a go, see what you think and if it's too grizzly, we can think of alternatives...

Hope the fitting session isn't too painful, I'll check in on you tomorrow,

love you lots, Frogga xxx
all the best!

Hey Artist, THANKS!!!

Well, hoist fitting went okish actually. It's not pleasant but the OT has been really kind and gentle - she had spent hours searching for the least painful and most supportive sling she could find. It is amazing what a difference it makes - before I had only used horrible ones. Admittedly, it's not like floating on a cloud - but a great improvement on sitting on rocks! Even the training wasn't that bad - the OT decided it would be good if my carer and all my friends learnt how to use it - so today Leah and Ben (yes... that Ben! dammit, why won't he get the idea? he told me today he was so glad he met me as we are 'best friends' - can't wait for the voodoo to take effect on his girlfriend...) got shown and she will come back and show more if needed - or let Leah or Ben show other people. It's not that complicated really - which is good! The OT is lovely, and whilst she checked that the hoist would fit in to the bathroom and over the toilet she understands that I won't be using it in there unless I TOTALLY have to, so it could be worse.

I love uni. I have awesome friends and in general the course is interesting. I would never consider giving it up. I am willing to suffer more pain through being here, and what is there to say I wouldn't have deterioated anyway? I have been deterioating since I developed RSD - but I have to continue with my life. No offense to anyone, but personally, i have to TRY and distract myself and it is better for me to be occupied. I think this year has been a steep learning curve - it is hard learning to live with other people. Before I came to uni I was trusted to work on my own - so if I was having a bad day/ week then I was trusted to get on with the work in bed at home. At uni you are "on call" 24 hours a day pretty much. Also, noise sends my pain levels sky high - and whilst at home it was pretty silent in halls of residence.. it's not!! If I am ever to get a job then I have to complete this course. I guess, it's just being a student and RSD exarcebate each other - no sleep = RSD, no sleep = student, stress = RSD, stress = student, too much noise/ light/ stimuation = upset RSD = normal student etc etc etc!

I will get through this and I do love it. It's just hard to stay positive at the moment when it feels like I'm going downhill - and admitting to myself that hoisting is becoming part of my reality. It makes me scared because before this I have always been "normal", stayed over friends houses, gone on holiday with them, been treated just as "me" but on wheels and with dead arms - but it's never been an issue. Friends have treated me the same as everyone else, but just not minded feeding me, dressing me, doing my transfers or any of that rubbish. I guess it feels like it "ties me down" or something. Or maybe it's just a new reality that, like any new reality, will take a while to get used to!

I am planning on bringing positive Frogga out now, I've had enough of complaining - others have far more going on in their lives, and when I critically examine it, I'm lucky. I have great friends, great family, I am able to take this course and to study.

Thanks Artist - you are the best!

love ya

Froggsy xxxxxxxxxxxxxxxxxxxxx

Positive "Only A Flesh Wound" Frogga! So glad it's not broken. Maybe you could tell Ben that the mere sight of clothing now induces pain, so that when he's around it's important that he remove his clothing? Purely for therapeutic purposes, of course!
I will think cross-atlantic negative thoughts about his girlfriend whilst you are being positive-frogga.
Glad you are in uni. Might as well stay there. Honestly, it did not sound as though home were particularly quiet, especially with your sister howling! Hugs,
Dancer

Molly MCN - now THAT is a GREAT idea.. Will give it a go and let you know what happens. Don't think he'll fall for it some how. His girl friend has decided she doesn't like me and is constantly asking whether I am there when he speaks to her.. HAHAHA! I've got her worried...!!!

(now that would be great.. stealing him off some stupid size 2 "normal" law student bimbo he's been with 4 years)

not that I'm mean or anything........

Thanks for the advice! Love ya Froggsy xxxxxxxx

Maybe if your friends learn how to use the hoist, then in a way, both you and they will continue to have independence? For example, you won't be quite as dependent on Ben's strong back. Instead, his feeble size 2 girlfriend will be able to bring you to the dinner table when they come for dinner? (sorry, I think my vicious cross-atlantic negative thoughts are going into a spiral!)
But seriously, is there any way to think about the hoist as a tool to maintain independence? I am not trying to be a Pollyanna (does that translate into British-English?), but sometimes what at first appears to be a symbol of illness or dependence can actually be a tool to sustain independence longer ...
in any event, your friends will probably want to try it out.

At least you could try telling Ben's girlfriend it's some type of avant-garde sex harness! Then she'll really worry. HAHAHA(oops, there I go again... sorry!)

frogga...check this out:
http://www.funsilly.com/voodoo.html



good news on the leg. ya had me worried girl.

Heya Molly,

I am LOVING that plan!! lol!! Well, the OT was very impressed that seeing as Ben had never used a hoist before he got it perfect first time.. (though slightly odd being rolled by him... ! LOL.. )

This email has been sort of waiting for the last 4 hours because Ben and Si just came in to my room (1am) because they knew my pain is stupid - and just wanted to bring me a cup of tea, and sit and eat biscuits and chat (though I did turn down the hot mackeral sarnies they bought in!!). It's so lovely living with people who really, really care. They can't understand what I live with, or what it feels like, but they know "me" and are interested in the "me" that is exists beyond the pain and disability. They will also do anything if it might help me at all. I know I have been moaning lately about pain and all of that - but I didn't stop to think how lucky I am to have a group of friends that are this brill!

and.............I found this out tonight. When searching for a house to live in next year they rejected anything that wasn't wheelchair accessible, with ramp, large ramped back garden and a downstairs toilet...

It's odd. I never thought that some of my best mates at uni would be 18/19 year old boys. I am so thankful that I met them. (I'd also like to point out that these are not wimpy guys --> BUT --> the rugby team!!)

It's 5am and they have just left, after giving me my tablets, playing around with pillows, duvets, blankets, bed controls etc - but yet it doesn't feel medicalised, and they all say that they don't feel like they are "caring" for me.

and the hoist is not going to change that.

Woo - well - I'm feeling much happier about all this...... some of the stuff they said tonight reminded me that my friends look behind my disability and all that rubbish and many of my new friends at uni have never known a wheelchair user before, let alone a quadraplegic - and yet....apparently I am just one of the Brendoner's...

Just thought I'd share!!

Love to you all!!! (especially Molly!)

Froggsyxxxxxxxxxxxxxxx

Dear Frogga,

I so happy to hear your leg is not broken. You are so brillant. Your truly such asset in everything you touch. Be good to you. Big Huge Hugs, Roz xxx

Frogga, so, *so* glad you're feeling better about the - sling! good word! (and Molly, that sex aid joke...maybe not so much of a joke?? maybe good thinking... ). Sometimes it just takes one thing to help sort our feelings out - and yes, it sounds like you've got an incredibly special bunch of friends there - do you perchance have any pics of this personal rugby team of yours? many hugs

Curious - internet voodoo doll, I just love it!! --------> now, who??.... artist puts on thinking cap.....

Molly - yes, we know Pollyanna - Hayley Mills is a Brit, the film was big there in the 60s...

all the best