Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
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Hesitant to make use of more accessible services/tools

Discussion in 'Lifestyle Management' started by lior, Mar 5, 2018.

  1. lior

    lior Senior Member

    Messages:
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    London
    Hello all.

    I'm feeling weird about using services and tools designed for disability.

    Examples:
    • A couple of friends have suggested that I ask for a hairdresser to come to my house, or to go to a pay-what-you-can hairdresser. Going to a hairdresser is a huge energy drain for me, and I'm concerned about money now that I'm not earning - but I'm not sure if it would be fair on the hairdressers to ask for these things.
    • I feel really resistant to using a wheelchair, even though I find it difficult to walk much.
    • I felt not-worthy when I got a free ticket for my brother at the cinema as if he was my carer.
    Should I be working towards getting myself to use these things more?
    They would make my life easier.

    The thing is, life isn't impossible without these things. I can still get myself to a hairdresser, just not very often, and I can still afford things, just not very often. I can walk, just not far and not fast and not every day. I don't need accompaniment to the cinema.

    If life was impossible without these things, I don't think I would feel weird about it because it would be 100% necessary. I don't feel weird about having a 'Please offer me a seat' badge on public transport, because I wouldn't be able to travel without it. I don't feel guilty about using the disabled loos if the 'normal' ones are upstairs and I'm not feeling good.

    I can get by. Should I only be using disability services/tools once I have no other option?
    I don't want to put people out, I don't feel worthy of loads of extra effort from other people.
    Or am I accustomed to a lower quality of life now, and should I be demanding to get a better quality?

    I am afraid of wheelchairs as a symbol of disability - the way things are now my disability is almost invisible. I'm afraid of what life would be like to be going around in a wheelchair, because there's so much discrimination out there. I've only used a wheelchair once when I had no other choice and it really freaked me out.

    I'm also afraid that by using these things I'd be losing my independence. Wheelchairs seem to require someone to push you. I feel weird about that. I can walk, and I just stay within the limits I have, rather than going outside my limits which would require help.

    Please could you share your experiences with me if you've been through these things?

    Please let me know if there is already a thread on this, I'm sure I'm not the first person to feel this way.

    Thank you.
     
    Eve18, alkt, Sushi and 1 other person like this.
  2. jesse's mom

    jesse's mom Senior Member

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    Alabama USA
    @lior , I have been going through the exact same thing. I can walk,
    some and days better than others... but long times getting up and down. Having to stand and talk to people. Going to something like I did yesterday; my daughter's play... My .first time to use a wheelchair I must say was much better than I expected.

    I wrestled with the idea of the wheelchair for about a week. I missed every night performance but was able to go to the matinee. I felt I was struggling between my ego, and my wellbeing. In choosing my wellbeeing I was treated very nicely by everyone. I thought I saw pity in maybe two people's faces. I just kept smiling and being so happy to be there. I think my happy face set most people at ease!

    It was way too loud for me, but Still smiling.

    Today I an very light and sound sensitive. Happy to be in bed resting, but I'm not having a crash yet!

    I believe if I walked and stood while talking to people for at least a half hour I would be much worse off.

    Now the hair part. You already know I was a hairdresser for decades. There are probably hairdressers who would love to come to your place and do your hair just for the cost of the product. When I was first starting out I did things like that. I don't know anything about UK taxes, but here in the US a hairdresser can write a housescall off income taxes as a charitable contribution.

    You are so clear about what you want it is easy for a hairdresser to do her part.

    I hope my experience can help you.
     
    PatJ, lior and alkt like this.
  3. alkt

    alkt Senior Member

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    uk
    am I disabled a question we all wrestle with because it speaks to the very core of how we see ourselves. something I continuously refused to admit in my less severe years. and still shy away from today being mostly housebound and not capable of doing very much does shatter the illusion of that particular lie. I think I only survived the first decade of this illness by telling my self that I will get better. but in a world were medicine insurance company profits and corrupt politics would rather we did not exist brainwashing the sick into believing we are not worthy of help never mind recognition is the norm. so we we have to fight for everything others take for granted. so you should except the help you can get now before it ceases to exist or your health further declines only to find such services no longer exist due to a lack of demand or governments further cuts. sorry for the ramble.
     
    jesse's mom and lior like this.
  4. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    USA
    Have you considered getting a walker with a seat? No one can push you, but you can stop and rest after you've walked whatever your limit is. I have one.
    upload_2018-3-5_14-7-35.jpeg
     
    alkt, PatJ and jesse's mom like this.

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