Ability and disability

This morning, walking the boys to school, my left hip started to catch.  It’s the same hip that, a few months ago, got locked in position and stayed that way, so I found myself getting nervous about walking.  The thing is, regular walking might help me to stay loose and actually keep my hip from locking up, but the association is in my mind between all the walking I was doing before when it locked up and the walking I’m doing now.

I’ve mentioned before that I have a chronic condition: fibromyalgia.  I also have a very weak immune system.  Lately, I’ve been thinking a lot about disability and identity.  I get sick a lot.  By sick, I mean unwell enough to require a day in bed.  When I’m not sick, there’s a percentage of time when I have difficulty moving, or pain, or general discomfort.  Some of it is so ever present that I generally do not notice it unless something calls it to my attention.

I don’t like to think about my illnesses as an identity.  I have this little thing in the back of my mind and it goes like this, “When I get in shape, then…”  When I get in shape, then I won’t get sick so often.  When I get in shape, my strength will protect my body from pain.  When I get in shape, I will be a different person who doesn’t have so many physical difficulties.

It hit me last month or thereabouts that I’m actually in decent shape.  I used to be a runner, and when I was, I was in better shape, but I walk a lot, I eat pretty well, and I go hiking most weekends.  I’m 31, and I was a teenager when I was running regularly.  Some of the better shape I was in was likely age.  This may be good shape for me.

This sudden realization was really upsetting.  That little mantra in the back of my mind was what was keeping the wolves at bay.  I had something to look forward to.  I was going to get in shape, and then things would be better.  Never mind that I didn’t have a plan for getting in shape and didn’t really know what I meant by it.  The words were magic.  They made me feel better.

Now, I think there are likely things I can do to improve my condition and health, so that’s not the end of the road or anything, but I think I may need to change how I think.  I have a lot of the fears one can get from chronic illness, the fears of becoming ill and knowing that it’s likely.  I have trouble gauging the difference between a little cold and the onset of something worse.  If I rest when the cold is coming on, can I stave off the lung infection, or am I just a lazy person?  If I don’t rest, is it my fault if I get sick?  When my back hurts terribly, is moving around better, or staying still?  Sometimes, activity makes me feel better.  Sometimes, activity leaves me with no resources left to fight and I wear out and get worse.

I’m writing about all this and it probably sounds pretty pitiful and I probably sound pitiable, but the truth is, I don’t really mean it that way.  It’s more just trying to capture in words some of the things I’ve been thinking about lately.  I’ve visited sites for people with fibromyalgia, and I don’t generally identify with the identity in those sites.  I have a lot of good days.

But I also have a lot of fear.  I know I’ve mentioned my most major illness before.  When I was 24, I stopped being able to walk, talk, or, essentially, breathe for three months.  It took a while to get a diagnosis, and in that time, the outlook was not good.  I faced the prospect of dying in my early twenties and leaving a young husband with two little boys to care for alone.  To say that this incident has haunted our lives since is not an exaggeration.  While the problem turned out to be my vocal cords and not something wrong with my heart or lungs, as originally posited, the fact of having faced the prospect of death is something that you don’t get over very easily.

This all sounds so dire and depressing, but it’s hard to write about chronic disability without sounding a little dire.  The point of all this, though, is that one of the reasons I like knitting so much is that I can generally do it even when I don’t feel well.  I worry about getting a part time or full time job outside the home and then losing it because of health issues.  My knitting, though, makes me feel somewhat productive even when all I’ve done with my day is lie in bed.

It’s a hard thing to be a person of skills unable to use those skills.  And that’s why it pays to develop new skills.  You never know which skills will best serve you when your life changes in some way.  Change can come from sudden catastrophe, or it can be a small, but important realization.  This may be good shape for me.

And it may not.  It may be that there are drugs that can help me.  It may be that I can build slowly from walking and hiking back up to jogging.  It may be that I can get in good shape and improve my health.  Teddy Roosevelt fought his asthma like a live thing and while his health was never as robust as he wanted it to be, no one thinks of Teddy Roosevelt as an invalid.

Whatever may be, I have skills that I can use to keep my mind in the game.  It’s sometimes a little scary looking at the future, but sometimes it looks pretty cool.

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13 Responses to “Ability and disability”

  1. Julie Says:

    wow, this is such a brave post. Not because you put having a disability out there (although that’s good too!) but because you seem like you’re facing up to so many things. maybe facing up is the hardest part. I don’t know, but it’s good when people talk about it.

  2. Burbler Says:

    You are magic and I salute you!

    It must be the week to blog about disability identity issues 🙂

  3. Whiteoak Says:

    I know some of how you feel, I also have fibromyalgia (diagnosed 10 years ago in my early 40’s). One of the hardest things is to try to live life fully while knowing there are so many things you can’t do without triggering an “episode”. And then there are those things you have to do even though they aren’t number one on the list of want-to-dos (like work a regular job).

    A good attitude is the best defense and knowing what is important to your life. The un-important stuff can be left go –

    Good luck moving forward.

  4. Sarah Says:

    Do you ever read Lene over at The Seated View? She does a lot of blogging about living with RA, and some her thoughts may resonate with you. http://theseatedview.blogspot.com/

  5. JJ Says:

    I really appreciate this post. I think this is the first time I’ve come across your site and wow! I can relate to a lot of your feelings, plus we are the same age.

    Best wishes to you.

  6. Barb Says:

    Thanks for this post. I, too, have a chronic illness and have struggled with many of the issues you write about. I have been living with it for the last 10 years, and I have had to quit jobs, adjust many many expectations, learn that feeling ‘”good enough” is sometimes really good, and that knitting really does save the day.

    Be well!

  7. Kiwiyarns Says:

    I have so much admiration for your positive mental attitude. Having a healthy view of what is affecting you and then viewing it in the right way is key to staying happy.

    I’m sure you have investigated it, but there are quite a few natural remedies that may help. Have you tried homeopathy?

    Best wishes for staying well.

  8. the Lady Says:

    Gee whiz. I am feeling you.
    I don’t have nearly the experience with pain that you’ve got, but I’ve had some, and isn’t it interesting how 1 – it changes us,/can change us and 2 – how our perception of pain changes?
    Love and feel-good thoughts of empathy to you.

  9. Sarah Says:

    I worry about so many of these things myself. It’s good to hear someone else talk about them.

  10. marlie Says:

    I am a new reader to your blog, and I found this post as I was looking for past knitting posts.

    That being said, I (sort of) know how you feel. My older sister was diagnosed with multiple sclerosis when she was 21, just when she started dating her now-husband. She was pretty stable for many years, but when they decided to have their first child when she was 29, her health quickly declined. Despite that, 3 years later, they had another child. Now she’s almost 40, has 2 amazing children, and is almost wheelchair bound. She’s able to use a walker for short distances, but she needs a walker to do anything that requires lots of walking and standing.

    She’s often confided to me her frustration in not being able to be like the other moms. She can’t run and play, she can’t tolerate extreme weather conditions… My 10-yr-old nephew is on his school’s track team, and I (the doting aunt!) go each week to help cheer him on because my sis can’t sit in the heat lest she have an exacerbation of her symptoms.

    Her health has prevented her from working, which has been really difficult for her. Her training is as a child psychologist, and while she no longer (well, very rarely) counsels patients, she tries to keep her skills sharp by advising students and interns, and by writing diversity curriculum for her kids’ school.

    She is a great example of someone making the best of a difficult (health) situation. What is scary, though, is that she’s only going to get worse. She’s been hospitalized several times – most recently right before Easter of this year – and I think she’s starting to realize that a wheelchair might soon be a permanent necessity.

  11. marlie Says:

    oops…

    Anyway, I just wanted to say that I really admire your perseverance. I think that people like you and my sister, who have been living day-to-day with incurable conditions in which your body is continually fighting itself, are way stronger than you may realize. I love and admire my sister to no end, and that’s why I do whatever I can to help her and her husband give my nephews the most normal childhood they can have. They may not have a mom that can come to track events and roller-skating parties, but they definitely have a goofy aunt who will make sure that they’re not the only kids without a mother figure to cheer them on.

  12. Lene Says:

    I’m late to the comments on this, but…

    It doesn’t sound dire or make you sound pitiable. It sounds honest. This demon – because to me, it feels like one – is hard to battle and it takes a while of going back and forth. And then doing that some more. Best thing I’ve come to is to try to integrate the sense that my illness/disability doesn’t change who I am, it just changes how I do things. It’s part of what I am, but not who I am.

    Of course, when I’m up against my limits and they prevent me from doing something I want to do, I get a bit less sanguine about it. At times, there are tantrums, but ya gotta get the feelings out, y’know?

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