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Thread: Feel like I'm a nuisance

  1. #1
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    Feel like I'm a nuisance

    I have a progressive debilitating condition, a type of mnd called hereditary spastic paraparesis. I am able to furniture walk around the house and have had a starlit fitted.

    The problem I have is that once I want to go outside I need an attendant wheelchair,I have weak arms and wrists so cannot manoeuvre myself , this means relying on other people. My husband works full time so through the week I'm at home alone.
    My sister has stated she's not going to push me around because she's to busy and I'd slow her down. My friends have cancelled events, telling each other it's because I'd be tired and not enjoy it and telling me a different story!!

    They are now going to the city for my friends birthday, we were originally going in the car with my wheelchair in the boot, now they've decided to go by train and told me I unfortunately wouldn't be able to go on the train. I know I could but I'm thinking that they don't want me there cos I'd just be a hassle with someone having to push me and stopping them enjoying their shopping and drinking
    Im feeling really down, I can't help being how I am, I'm going to get worse and already I'm feeling that I'd be better off out of the way. I live for the weekend and my husband being at home, he has no problem taking me out and making me feel normal, it's just 5 days of being stuck at home alone is making me so sad.
    I am going to get a mobility scooter and see if that helps get me more mobile, I think they'll be embarrassed to go out with me on that so I'll go out alone

  2. #2
    Senior Member Lighttouch's Avatar
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    Keeper29, you are who you are and if anyone has a problem with that it's their problem not yours.

    Instead of feeling sorry for yourself I'd like to try and empower you with a few tips on the social front that will bend things in your favour.

    There are many places you can go with a Personnel Assistant and the PA goes free.

    Theatres. There may be a show you want to see. Phone the theatre direct and ask about accessible seating and that you want to bring your PA /friend - you'll then get 241 seats

    Cinema. Apply for a CEA free cinema pass - again 241 with or without a wheelchair. https://www.ceacard.co.uk/howtoapply.aspx

    Shopmobility. All shopping malls will have a shopmobility centre that can hire out electric scooters. Take some ID and they may be free or they may charge you by the hour.

    Blue Badge. I'm sure you must have one of these.

    Arena type stadiums. If you enjoy concerts there are designated wheelchair spots with free seat for a PA.

    Football clubs. Our local premier clubs offer free spaces to wheelchair users.

    Leisure Centre. You will find Pas go free. You will also get discount on activities.

    National Trust. They allow Pas in free. Just buy one annual membership and see hundreds of places for free. Some gardens have free scooter hire for a £10 returnable fee.

    Zoos. Chester Zoo allows free entry to PAs and free scooter hire. You would need to book in advance
    Last edited by Lighttouch; 24-06-15 at 08:01.

  3. #3
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    Thankyou lighttouch, I actually feel a bit brighter for writing this down and getting it off my chest. the fact that someone listened to me and replied is also cathartic. You are right it's their problem, I can't help how they feel and maybe I have them wrong and they're just worried about how I'll manage. I'm going to phone them and have a chat about the train. I am actually going to the theatre on Saturday with my husband getting in free as my carer!

  4. #4
    Senior Member Lighttouch's Avatar
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    Yes, it's good to write things down and clear your head.

    Remember you are a wonderful person with lots to offer Don't let anyone tell you different. I'm in the process of getting a motorised manual wheelchair myself that will be here in under two weeks. I can only use one arm so can't self-propell a manual wheelchair and I don't like people pushing me so know where you are coming from.

    Going to see the musical 'Wicked' tonight on a 241 deal - should be fun!

  5. #5
    Senior Member barbiejane's Avatar
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    I'm sorry you're feeling down but in my opinion if your friends don't want to include you just because you're in a wheelchair then I'm sorry to say they aren't true friends.
    I would definetly register with your local shopmobility.Its a great organisation and the guys who run ours can't help enough.Even if you want a Scooter for half hour to have a browse through town and blow the cobwebs away its well worth it.

  6. #6
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    is an electric scooter a possibility? As its self powered, it means your not reliant on others.

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