Disability Shrinks the World

I’m comfortable with my mental illnesses. After all, this blog isn’t called The Bumble Grumble. I know how they affect me, I know which things will help me cope with them, and which things will make me worse. Society finds me (as in generic, mentally-ill me) creepy, but that just makes me talk about mental illness more. My status as a member of the disabled community is comfortable and familiar.

But last April, two new conditions developed. With almost a year’s worth of experience, I’m not new to the health problems, but I feel like a beginner in terms of coping. I rarely leave my apartment. It’s unhealthy to stay isolated and uninvolved in things, but what’s worse, those behaviors trigger my mental illnesses. But it can’t be helped. Going anywhere is difficult and intimidating.

On Saturday, I went to pick up some medication from a pharmacy that is so close, I used to walk to it to pick up my drugs. But, I let that memory go, and I drive to the damn pharmacy. I refuse to use the drive-through. I have a disabled parking permit, so I can park close to the front door. Like many drugstores, the pharmacy is located at the very back of the store. Halfway through the store, I realize I probably can’t make it to the back without sitting down. I will not sit on the floor in the middle of the aisle like a bratty 5-year-old. I’m a bratty 37-year-old after all, and I’m sick of embarrassing myself. I manage to get my medicine and leave without sitting anywhere inappropriate. But when I get home, I have to lie down for the rest of the day. That’s why I leave the apartment so rarely!

Of course, one of the major issues disabled people have to deal with is how to support themselves in spite of their disability. Social Security rejected my application for benefits on a technicality. There is no appeal-there’s no way I can get disability benefits unless I work this year and part of next year. I was applying for benefits because I’m unable to work. Ah, bureaucracy crushes another little bug.

So I’m trying to cope. I haven’t figured out how to cope with the symptoms, the inability to get around or to function, or the guilt at not working. But what’s intolerable is how small my world is now. Thinking of all the things that I’ve lost leads to pity parties. But I can’t help noticing so much absence in my life. Without email and blogs, I would truly be lost right now.

In spite of all of this, I’m one of the lucky ones. I have it better than many people do in terms of symptoms, financial support, and medical care. How do other people manage? How does a person cope with the stripping away of every facet of their life? Becoming disabled shouldn’t mean the automatic loss of people and things you care about. Disabled shouldn’t mean disposable.

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18 responses to “Disability Shrinks the World

  1. Excellent point about the pharmacy, SE. Shampoo I can get any number of places; vicodin, notsomuch. I remember some of those long walks to the pharmacy counter – long because of I was in public and that stressed me out big time. But I never thought on it much further (because just about everything stressed me) and I’ll say again – it’s an excellent point. Damn.

    The isolation is a tough one. Sometimes I think – I know – that I needed to do that because the alternative would make things worse in the short term. But I had a job, and somehow when it’s a job, you find a way most of the time. If I didn’t have that, I wonder if the isolation would have ended up being worst after all.

    I know “just do it” is ridiculous advice, because one cannot “just do it”. But maybe the job thing, at least for me, was a clue. It wasn’t employment necessarily that got me out – it was that it was a commitment, that others were relying on me. If there is something out there that has that same quality – maybe that can be something to explore.

    end unsolicited advice 😉

  2. “Disabled shouldn’t mean disposable” You are SO right.

    >

  3. S.E.,

    I suffered from social anxiety disorder for a short period of time, so while I’m sure I can’t identify completely, I think have some understanding of what you are going through. I was so bad at one point that I couldn’t set foot in a public place or even go see good friends. If someone would come to my home to visit my bf and I, I would go lock myself in the bedroom until the left. I’m still shy in certain situations, but I’m basically completely functional now.

    ““Disabled shouldn’t mean disposable” You are SO right.”

    Ditto.

  4. manxome-That’s good advice-you’re right about the commitment part. Eventually, I hope that’s what is able to help me work in spite of significant pain.

    But the damn fatigue is another matter. It’s much more debilitating than the pain, and I never thought I’d say that about anything. I reach the point where my body must collapse, period. If I’m in public, oh well. And I have to be careful-if I run an errand and overdo it, I won’t be able to fix lunch. I’ll just have to lie down and be hungry. I don’t have any idea how to make the fatigue let up enough to be work-ready. 😦

    Ren-Thank you!

    Faith-Social anxiety just puts an end to everything. I never had a severe case, but I can try to imagine the impact of that. I’m glad that you’re better now.

  5. Spotted Ellie – I send my heartful love and instructions to the universe to get this sorted out for you. It is not you, it is the system.
    I know what its like to have the energy to only do one thing in a day – so its either cook a meal or collect the prescription – not both. Eventually, after eighteen difficult months, I found a way of getting help. How do we find a way for you to get sufficient help. You cannot possibly work … I know the will is there, but not the capacity.
    Fatigue – my ‘bump’ has had M.E. for all of her adult life and there have been years, yes years, when she has not had the stamina to walk from the front of the shop/pharmacy to the back, or even drive there. But she has had me (a little better and using the wheelchair to overcome fatigue) and paid home help to do it for her. Our systems are complex but we have found a way – but we couldn’t do it on our own, there was an advocacy service, a charity organisation, that put us on the right track to getting first the benefits income through a new application, and secondly, the home help, in order to cope with the health and disability problems. I know it is entirely different, and more difficult, in your country. What can I say: ask for help. shout for help. Do it through the blog. The only thing I can think of suggesting is that you visit Mark Segel (a lawyer) on the 19th Floor (see link on my page) and ask if he has any USA based advice or pointers.
    I may be out of date with this comment, but I hope it is relevant.

  6. Sally-Thank you so much. Your comment is completely relevant, and I appreciate your suggestions. I will look up Mark Segel.

  7. I’m feeling sympathetic, and full of desire to help. If you want us to do stuff, you should tell me, as I might do stuff. Except for the only skills I have are that I can ask people how they feel about their mothers…

  8. ((( strong hugs)))
    and thank you for all you give women, SE.

  9. shannon-Thank you! But if you asked me how I felt about my mother, we’d still be talking next year. 😉

    SecondWaver-Thank you!

  10. I can also ask you how you feel about pie!

  11. I wish this were a kinder world.

  12. oh darling ***HUGE HUGS***

    Have you tried appealing. From what I’ve found they never give you SSI-D on the first try, you always have to appeal.

  13. Big hugs for you from me. You know how I feel about this. Do appeal, Burrow is right. And mothers, yes you and I could do a dissertation I’m sure… Love, Pippa x

  14. Big hug also from across the Atlantic! Do you have internet pharmacies, such as Doc Morrison? They deliver whatever you need right at your door. My local pharmacy would do the same, if I for some reason would be unable to pick up my medication right there. I know that does also mean there is one less reason to leave your home at all, but on the other hand that could make you safe up energy for more pleasurable events, such as meeting friends.

  15. shannon-Chocolate silk pie (swoons)

    suebob-Thank you, and me too!

    burrow-They didn’t reject me for medical reasons. I don’t meet their criteria: I spent too many of the last 10 years teaching, and paying into teachers’ retirement instead of social security. I have loads of credits paying into ss from before the last 10 years, but no go.

    Pippa-Should we do a purging mother’s conference? 🙂

    BloggingMone-That is great advice. As you said, I leave less, but I have MORE energy then. My health insurance offers a mail-order pharmacy, and I’m in the process of converting my (many) prescriptions over to them. I think it will make a big difference. Especially since, every time a doctor changes a prescription, it’s on a different schedule than the other meds, and I can’t just pick them all up at once!

  16. Spotted Elephant, your problems match many of my own. Re anxiety, I found taking up a new interest (photography, in limited bursts due to my physical disability) helped me put some beauty back in what was feeling like an ugly shell of a life. I paint pictures when able, and the rest of the time try and be a good, but depleted, mum. I realise I’ve been luckier on benefits, but I had to appeal and suggest maybe get welfare advice to do the same. Fighting the system, somehow, when you find the strength, can help with depression and low self esteem. I wish you luck, and love your blog. Must add it to my list. oxo

  17. seahorse-You’re right about fighting the system helping. Right now, I’m feeling more positive, and am focusing on my health, with the hopes of creating a life I want instead of just suffering through, you know? Thanks for the kind words.

    And right back at you on the blog-yours is so beautiful, and such a great-I don’t know how to put it-refocusing? A deliberate decision to focus on the beautiful is a powerful thing.

  18. Thanks for your kindness, esp in the last couple of days. It means a lot. To keep an eye on the horizon, and have an idea of what you want your life to be like means that in time, and by taking things a step at a time, wonderful things can be achieved.

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