[pinkangel]

Really sorry i havvent been around on here, the last few months have been literally hell. i spent november in a near coma after my epilepsy went out of wack so spent 2 weeks in hospitsl there, then i ended up back in in dencember following a 4 hour seizure, My neurologisy in london got involved and i had yet again another medication change, ...touch all wood im 9 weeks seizure free at the moment

over the last few weeks ive been very ill and in and out of hospital this time not for my seizures
but wiith the spasms in my spine, some of you know this has been going on a very long time since the spiking 5 years ago then the car crash. this has also severerly disfigured my feet so im having to have splints made by the hospital, i did have drop foot and was in afos but its worse now,
no dr was taking my back seriously,we have just been refused a hoist by OT and an air flow matteress, becuase i get pressure sores from being incontinant and not being able to move myself in bed - ( i even have a special hospital NHS bed) we are also having to fight via a PCT panel which has so far been 10 weeks for pull up style nappies - i have the adult version of babys ones with the tape at the sides and its grreat with no hands!!!!! (sarcasm) becuase pull ups arnt "normal" i have to proove why i need them

things have now taken a step worse and to be honest im crying for help here
i was taken into hospital by ambulance 3 times in the last 3 weeks through the spasms in my back, i literally would just collapse my right leg that i rely on just let go and i went with it, and on thursday... things became serious...ive been left hemiplegic for 5 yrs so that didnt worry me, so there was me on the gas&air, pethadine, diazepam, and screaming like murder after i tried to reach for my wheelchair to go to the toilet the top of my body moved the botom of me didnt and just collapsed.

my sisiter came back from work and called an ambulance stayed there all day - they were useless apart from giving me stronger pain meds - pethadine and baclofen BUT im paralyed below the waist im now a paraplegic..know 1 knows why no one wants to help, im now on pethadine and bacofen but im still in so much pain physically & emotionally, by bladder and bowel are also stuck in spasm

we are desp trying to contact neuro to bring appointment forward as its not till may, but what the hell am i to do, socail services are doing nothing to help, my MP alredy knows just as i was beginning to move on it smacks me back.this is just isnt fair.

we tried to look on ebay for a tranfer banana board but their nearly £80 why is it all so expensive!!

really sorry for not being around

p.s hi em, love ya loads)

cat

Attached thumbnail(s)

• 

[M@CHINE]

welcome and thx for sharing.. don't know bout your condition but hope it improves

[Tetracyclone]

Cat-

No lack of drama, aye? I pray you find a doctor who can be fascinated by your problems and do you some good. Push like hell to get cooperation.

Go, girl, go!

[Avocado Baby]

I'm really sorry to hear you're having such a terrible time of things. I hope everything starts to improve soon

[jules]

Did you go to your local hospital when you were admitted. It might me worth you just either driving or being driven to the hospital where your Neuro is, if you go to A&E there then they will have to see you. That has always been the advice of my surgeon who is in London and I live in the West county, if something goes wrong in the middle of the night and I am worried just drive up there and get to A&E.

I also think you should change your GP if they are not being supportive, mine are brilliant, since I had my complications with my lung disease they openly admit they know nothing about it and ask me what I want and when I want it and will do anything, I have been quite ill for the past few weeks and I've had home visits, phone appointments and anything else to make my life easier really.

When you say you are paralysed from the waist down now do you mean you have lost feeling and movement or one or the other? What reasons did the OT give for refusing your hoist, another thing I would get your GP on to they should be fighting for you too.

Hope this helps

Jules

[purple_faeries]

hiya

I am sorry things have got so bad for you, I sorta know how you feel, I have been having a hell of a time recently and my neuro is fluxomed by me, though it looks as though they've found a reason for my paralysis is a genetic condition called Spino-Cerebellar Atrophy 17 (SCA-17).

I'm not sure where you are in the country, but I have a banana board that you are welcome to if you can somehow get it lol.

Take care and I hope you start feeling better soon and have dr's listen to you

Hannah xxx