I came out of costa on tuesday after 2 1/2 wks. But i am now totally dependant and almost bedridden as i can only use my right hand and im a leftie. I though it was a bit wierd that chest ward thought they could get neuro tests done. I was right cuz they didnt get done.
Saw my gp on thursday. He said hes been arguing with all the different docs/social workers/ places i might stay. I dont fit neatly into anyones box or job description so no one will do anything more for me. So now my mum has to help me change and go to the loo. I hate it. Its an awful feeling to have my intimity broken everyday.
Also now cant move my wheelie around on my own. Stopped all my activities that i had: studies, painting, wheelchair basketball and rugby.
I just feel i dont have a life anymore and cant do anything. I dont know how lonng i can tale this for.
Sorry but thought it might do me good to get it down.
Take care all.
Rose xx
6 Replies
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awww Rose, rant away! That is awful, I can't even imagine how frustrated and fed up you must be. Massive, massive hugs.
I really wish I could do something for you! Is your GP a good advocate - will he help you get somewhere? It's not acceptable that they all get to ignore you because you don't fit into one box neatly: this is real life and people don't. I hope he keeps going until you get somewhere, maybe a carer for now so at least it's not your mum having to do that part as it can't be easy for either of you, and some rehab for the stroke?
Really, really hoping things look up for you soon. Hugs again xxx
Hi Rose
Sorry you're having such a difficult time. Is your GP looking for residential care or a respite placement till you build your strength back up or is it for other health issues? I hope you find something soon. If the social workers continue to be difficult then maybe think about going through PALS. You deserve to get the help you need. I hope the situation resolves itself soon x
Hi Rose,
firstly, I'm not sure anyone could take that!
The only thing I can offer is that there's always the possibility of recovery. Particularly with stroke - I have a few friends who have had strokes young, and they've all eventually far exceeded the initial expectations for recovery. But then I know you have other complications with tumours and things, so maybe that's not so relevant.
The main thing is that new treatments and new therapies and new drugs emerge all the time. Given that 50 years ago people were still being offered cigarettes for asthma, I'm hopeful that we'll all be cured in a couple of decades.
The problem of not fitting in the right box is a classic frustration with services - it's not you, there are many people who come up against that nonsense. You have to fight and argue and show them that this is ridiculous, and you *will* eventually find someone who is prepared to pull out all the stops for you to get the right service.
Hopefully with time you'll also develop more skills in your right hand - I'm a rightie but have lost use of my right hand a few times, temporarily, and my left eventually does start to be less paw and more like an actual human hand. I won't promise anything specific, except that your 'wrong' hand will definitely become less annoying to use than it is right now.
At the same time, it all sucks. It really does. You have every right to feel furious / desperate / at the end of your tether. It would be crazy *not* to feel like you've had enough at this point. Do you have someone to talk to - a counsellor or therapist?
C
you must be so frustrated - cant really offer much in the way of advice. I am also currently feeling like i dont know how long i can do this for, its a horrible feeling. My personal strategy for dealing with this is to get a huge pad of paper, and spend a couple of days writing a list of everything i am finding hard, feeling scared/stressed/annoyed about, thoughts and feelings. Really taking the time to sit and think so i can be as specific as possible. then after a few days of listing you (hopefully) will find that you are no longer adding new stuff to the list, or only very occasionally, as the major day-to-day issues are on the list. Then read through and try to think through things you can do to help, or specific people you could ask for help (so for example i assume atm you cant write well, so things you could do could be getting a voice recorder as a form of writing, or using a laptop more, and you could ask for help from a physio, or im sure there are charities who provide funding for equipment to turn voice to written text - those all go on the new list) and anything you can solve can be done. then you areleft with the tricky stuff - it might help to ask GP for advice about these things (or us!). not a technique that works for everyone im sure, but i find it helps me feel less out of control, and like im actually doing things to adress the issues. It also makes your problems seem less infinite if they are in a finite list in front of you!
Make sure you are looking after your mental health too, i know you have mentioned MH stuff on other threads, so i assume you have/are recieving some kind of support for this, make sure that you are, and that it is as much as you need! If nothing else physical health is strongly connected to mental health, and certainly the way you relate to physical health can change over time! i really hope you are feeling better soon! im sure you will. my understanding of strokes is that even if things dont feel like they are improving as such, they often feel like they are changing, and often that is enough to give you a break!
I don't blame you wanting to rant. I can't imagine how difficulty things are for you at the moment sending virtual hugs to you.
Take care.
I'm not suprised that you need a rant and to get things out. You're going through a very rough time and you have my every sympathy.
Might you be able get access to an electric wheelie with controls on the right.
I really hope your GP makes some progress for you regards support/care etc. I'm sure it's hard for both you and your mum to do this without outside help.
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Worried, confused, dont know what to do!!
