Wake up from dreams in which I can walk, to find myself stuck in bed in a body that doesn't work, often overheated. Scream in horror at what my life has become. Look at clock. Think I've got half an hour to relax and wake up before the carers arrive.
Fall asleep.
Wake to the sound of carers coming in. Want to scream in frustration but can't because of how they would react.
Spend the next 45 mins whimpering while I'm rolled around, washed, dressed etc.and moved into a wheelchair. If I'm lucky they talk kindly, more often they stand over me in silence, creeping me out, while I struggle to get my hands working well enough to brush my teeth. If I'm more unlucky they chat to each other over my head, or bombard me with questions (what do I want for breakfast? Do I want the window open? ) while I've got a toothbrush in my mouth and can't speak. Sometimes the lifting into the wheelchair using a stand-aid goes wrong and I end up hanging on desperately gasping for breath unable to speak while they stand over me saying "What do you want us to do?" and I want to say one of:
- Use your initiative.
-How am I supposed to know? This hasn't happened to me before.
- Just kill me now and put me out of my misery.
There have been times when I'm sobbing and crying through all this, but they are on a schedule and haven't got time to stop and say something kind and reassuring, it's just bish bash bosh job done see you at lunchtime and they're gone. Sometimes they say things like "Have a good morning" (like I can) or "You take care now" (Like I can do that either). All the time I'm putting on my nice act, saying please and thankyou nicely, like a good little girl, despite often wanting to yell at them for being clumsy, heartless, thoughtless or whatever else they seem to me to be.
After an hour I've woken up and cooled down and my arms and hands have loosened up, and eventually I get stuck into doing something, and the next thing I know is it's lunchtime and they're back.
This is not life, it's just existence, and it sucks. I've swallowed and bottled up so much that I'm going to explode soon.
I need a hug. I need some sort of reason to carry on. The ramp may be nice, but it doesn't solve the problem.
Written by
Kit10
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There is nothing in the world that would ever make this feel better that I can say online. Just believe that I wish I could give you a hug and tell you you are not alone in this. 🫂Reach out anytime.
Yes, it does suck. Some days are harder than others. You may feel alone in this, but you aren't. All I can offer is a big hug. Hang in there and take care.
lots of hugs but i can't feel you ,sure hope they feel good...i know i do love to give them just wish i could actually give them to you ...hoping they help ...i agree with others give them some kind of bs about singing a song or sounding like someone ...i like this ...interacting with them on anything to get them to see you for you are a human being and would like to be spoken to like any one else ...giggles ,smiles ,singing a song and asking if they could sing along would be great or some good jokes that they have heard ...have some fun ...loves and hugs do make life a little better for the moment ...put on some music ...🥰😃😇🌷🌼🌈😝😛🤣🌺🤠👻👻👻👻💝💖🎃🎃...that's right halloween is just around the corner ...ask someone to put something up for the holiday ....i can't say i feel for you for i am not there with you but i do want you to feel better ...talk to someone or find someone thru the MS society to try to find someone to help you find things that you can do to occupy the day like a hobby of somekind ...sorry i really don't know what to suggest ...i do the find a word in books i buy a store ...can't crochet anymore for eyes are too bad ...just play games watch tv ....loves to help and big hugs ....take care and find someone that can help with the day to day things to help with life..
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