frustration is:

............trying to get hold of a consultant when you need one...whose secretary you have to go through, who knows nothing and only asks when your last injections were.. (and I'm TRYING to explain that this isn't botox related but we think it's linked to the dystonia)....

.............discovering you have to go out, whilst waiting for him to phone back and KNOWING that he will ring the second you leave your bedroom.

................knowing that he will tell me its up to the GP to sort out.

................realising all your clothes fall down and you're too broke to go shopping..................

LOL

Rxxxxxxxxxxx

in your post........sorry that things are so bad for you right now.........

hope you hear from the consultant soon...........

big hugs to you frogga

couldn't agree more.....having to go out while waiting for a phone call is one of those things that just shouldn't happen!

and clothes?.....doesn't matter if u can afford to shop....the styles r ugly, the fabrics unbearable, the store clerks nasty.

frustration is as bad as pain sometimes....hope your day improves!

liz

I feel loved!!!!

because I've been having a pretty awful time RSD/ pain/ symptom wise my best mate came down today!!! (and considering it took her 6 hours.. I feel very loved!!). She has just fallen asleep on my floor (on a camp bed), and is going to help me with dealing with the drs tomorrow - the neurologists didn't get round to phoning me back. And, in reality, I see them in 6 weeks or so - it's just at the rate I'm going I will be about 100pounds by then! The first thing she said is "What happened?"... it's bizzare - all my clothes are too big.... I look like I am being eaten by my trousers (I wear hiking trousers because they have fleece inside) and it looks like I stole them off someone else..

the reason for new clothes is that every time I am lifted EVERYTHING falls down... and I mean EVERYTHING (which ISN'T good when you have weepy dressings on your bum...which then have to be reapplied.. I am figuring that even as a poor student I can afford new underwear which will hopefully stop the constant mooning of everyone every time I am transferred. (alternatively, I could give in to the H O I S T scenario... but that isn't happening. - also.. can anyone explain to me why I have lost so much weight off my bum and stomach but NOT off my chest - It is SO annoying - I have even less counterbalance than normal - I am like a flipping weevil toy...

oh well.., lyds is going to stay a couple of days until i am doing better, and just be here... cos it's sometimes so lonely being at university with this kind of pain - cos my mates try to understand, but they have only known me since September (where, despite how much I moan, I have been doing ok for me..) whereas Lyds gone through it all with me before and doesn't need to wait for me to explain before she helps... she sort of instinctively knows.

So... although I'm still frustrated, I am also really happy it's been so great to be able to spend time with someone I don't have to pretend that things are all briliant too.... (well, the boys.. but they don't really get it.. they understand that I need the chance to cry, or that I need a hug etc but they don't understand why....if that makes sense?)
1
Thanks for your thoughts - I'm sure they helped send Lyds to me

Love

Frogga xxxxxxxxx

Frogga,
SO glad for you! Friends are the greatest - especially understanding friends. My friends try, but can't really get it - which I'm kinda glad for, as it means they don't hurt. Am glad my dad gets it - can't wait to go home for a few days soon!

As for the weight - am ever so slightly envious, as could stand to lose weight off stomach/bum myself - but not really, as I know it's annoying.
Are you losing weight because of meds or your new diet? If yes, could explain weirdness - and if is diet, you can probably expect that your chest will eventually follow. If you're losing weight really fast though - be careful! If you lose too much too fast, you can lose the fat that protects your organs - that would be bad!

Hope the doctor thing goes ok for you.

Thinking of you!

Hey BB

Lyds doesn't really understand the pain - it's just that she's got used to me with it and so.. even if she doesn't know what's up, she sort of does (does that make sense?!) LOL... (and even better she's taken over from my carer - who is not very good at being careful when you're in agony....seriously nothing like having your clothes removed brutaly!)

Anyhow... the weight thing isn't veganism -it's the swallowing issues and the fact that I've been in too much pain to eat.. and normally when I'm struggling with eating I go onto a liquid diet - but we can't do that because I can't swallow well enough... (well.. I can... but a glass of stuff takes me all day).

It's weird - but even sitting in my wheelchair I'm finding that I'm having to be tilted as far back as possible otherwise I fall head first (I'm not sure what chest measurements you have in the US but I'm an E..... and it's not good for balance! LOL....)

How are you doing? are you on break at the moment? It is brill to be able to go home and just chill without thinking about how you will have to hide the pain... !!

Thanks babe )

frxxxxxxxxx