Daily life is very trying

Hi all I hope your all well, and have got plans for the easter break. I would love to hear how trying daily tasks and life is. I find I have to think of trip hazards, can I carry things. Some days just simple bending down, picking things up etc can feel so hard to do. I tried out a self propelled wheelchair on Wednesday, and my weaker arm has really ached, but I won't say anything to wheelchair services, because they may say no to me. My arm just needs to get use to it, and basically I wanted it only to move very short distance. If it gives me a small pocket of independence. I wanted it for when I go to hospital on my own and they leave me in the middle of a room. I am usually nowhere near the drinks machine, magazines and usually in the way of someone. Plus if I need the toilet I have to attract someones attention. Its all independence and keeping some dignity.

My partner went shopping today and brought me some different food and a new tray. When someone buys you something and you either can't eat it or it doesn't work for you, there's a horrible feeling of guilt.

8 Replies

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  • Hi angel, I don't have anywhere near the problems, you have, but do find at times everything is a struggle. I make plans for the day, then sit here at the end of the day, having not done anything, and feel I've wasted the day. I go back to work next week, and know I'll be wishing I'd decorated the kitchen etc while I've been off, had the wallpaper now for two years, a bit longer won't hurt. I hope you are successful with your motorised wheelchair, it would give you more independence and I wish you well xx

  • Hi I wish it was motorised but I'm not allowed one because I have seizures. They don't feel it would safe as your body locks and you loss control, its just one that I can wheel myself manually. At the moment I have to have someone push me around. I'd give my right arm to drive again and be back at work. My health is just so unpredictable but I have to live with it. I push myself hard just so I can do something but pay for it later. If you feel your wasting your day at all write yourself a task list and cross it off as you go on. When you've done them it makes you feel good :-)

  • Hello Angel, Jules here -

    Thanks for your post regarding 'the leaflet' ....trying not to over think it (as i usually do).

    You have so much to deal with, but it doesn't stop you caring for others - thats a wonderful rare thing.

    I was in a hospital waiting room earlier this week and this really old gent was wheeled next to me whilst i was sitting waiting.

    The family member (I think) 'parked' the chair backwards next to the line of seats i was on, so he was facing the wrong way.

    I had a really lovely chat to the man, but felt so bad for him as we both had to lean backwards to see each other.

    I felt like getting up and turning the chair the right way round somhe could join in with everyone sitting there (obviously i wouldnt).

    Angel, why do people leave people in wheel chairs parked the opposite was to how people are naturally sitting ? I have seen it before where a person was 'parked'just about facing a wall in an xray waiting room. It looked really sad.

    is there a reason it must be done that way ?

    Kindest regards to you Angel (hope your evening is going ok ish)

    Jules

    x

  • Hi hun thank you for your lovely reply, I just wanted to praise you for a real achievement. I have been put in the middle of a waiting room, or the wrong way so many times. People just don't think that we want to sit like everyone else, we don't want to stand out. I've been left in the middle of a waiting room I was no where near the drinks machine, or the magazines and I had trouble finding someone to take me to the toilet. That's why I'm glad I'm getting a self propelled wheelchair. But this happens to disabled people all the time. I think society put blinkers on when people have disabilities or injuries

    Anyway enough about me how did you feel when you had completed your artwork xx

  • sorry Agel, Jules here - missed your reply.

    That is what i thought the poor man must have been thinking. When i broke my ankle i was left like that and i know how it made me feel. Unbelievable people.

    The other experience i had similar was when they were wheeling me around on a trolly through the corridors. Why do porter think its ok to talk to other porters/other people as if you are not there - and some real personal stuff sometimes, that i really didnt want to know. I felt really alienated ... is that the right word - twlight zone - as if i didnt exist.

    Anyway - yes, the leaflet. I felt in shock that i had pressed the button - but actually, absolutley no sudden regrets that i had done - just shock and releif, I just thought to myself, 'i really dot care now - i cant try anymore at this one subject'.

    So, today i have been recycling the hundreds of trees i used to print out things i would never use... ! Oh dear. But, i have cleared my desk after months and months of it looking depressing to me. I still have a long way to go Angel - i have to choose which text to use and which to 'bin' but i will get there.

    Heaven knows why they allowed me to continue so long with this - maybe they wont give me any further work - but, i had to call it a day and send them what i had to give them.

    Will let you know what they decide.

    Pretty fed up with myself today - just want the day ton end and get in my PJs.

    Hows your day going ?

    Jules

    x

  • Hi Jules I've had loads of hospital staff, and ambulance staff talk over me as I wasn't there. They have chit chatted about work, where they're going out that night etc. They don't see us a humans that thy need to show respect and keep their dignity.

    I think you've done brilliantly completing that work and clearing your desk. You should feel content and proud of yourself instead of feeling low. You completed the work, ok it took you longer than you wanted but if you'd done it quicker doesn't mean it would have been a better job.

    I set myself a job to do today and it took me ages at the last bit my partner came over to help. He jumped straight in and wrecked it. He can be like a bull in a china shop and is heavy handed. I had to start again and eventually got it done, but now in pain but you get use to it :-)

    Don't be down hun be proud of yourself xx

  • Hi Angel, I know it would be so good to not feel that every day is a battle wouldn't it?

    We just have to keep carrying on. And don't feel guilty about anything, this is not something that is your fault, talk about what does and doesn't work for you, try getting along to a centre that has all manner of disability aids with your husband and look for what will help you. You can then look around for a cheaper version if needed. We have just had one, run by Rosscare I think, open in our health centre, it looks amazing, I intend to go in looking for gadgets.

    I was lucky enough to be able to give back my wheelchair, I had learnt to self propel in rehab but it is so tiring. Persevere you will get there.

    Good luck Janet x

  • Hi Kirk I am lucky (didn't think so at the time) but I working in customer service for a disabled equipment company for about 6yrs. What I don't know about a commode is not worth knowing lol. I know all the different equipment available and have had assessments from my ot, the things I had brought already were right, and she organised the larger items. When you struggle to move because your restricted or in pain, eg you drop something or you have to get something from a shelf. On a good day you can not think anything of doing those tasks, but on a bad day it just adds to the pain or discomfort.

    I watched the last leg programme last night and they spoke about how the gov have cut so many disabled peoples disability payment on pip. They seem to be gunning for the vulnerable. The presenter said that disabled have a shit time and then they're attacked or they have to prove that their life is difficult. We seem to have gone backwards, the classes have come back with a vengeance upper class, middle, working and poor. (Sorry its my morning rant)

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