Back to Hanging

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My feet are back to the same old ache again. No mistaking that sensation when I put my weight down. While I’m disappointed to no longer have clouds under my toes, I did get a lot accomplished. The house isn’t quite shiny, but the dust bunnies have been rounded up, branded, and moved onto the garbage express downstairs. Of all the extra jobs I could have done yesterday, I chose to scrub the sinks out. So there is SOME shine – you just gotta go look in a sink to see it. I can do that. My room is picked up, the garbage and recycling are out, and the dishes are done. I even watered my plants. I’m all set to have another sloth episode and do nothing for an extended period.

Of course, I don’t want that to happen. But I’m ready for it.

Took a walk over to buy my weekly lotto card and heard that sound I’ve grown to like so much – a ringing bell. That’s what the lotto machines make here when you’ve got some sort of winning ticket. Or maybe I should say that’s ONE of the sounds; it’s the only one I’ve heard, and for me it means free ticket, free ticket, free ticket. Double my chances for – oh. It was yesterday. Well, double my dreams right up to the point I turn the tickets in to be checked. 😀 A free ticket is the smallest prize you can win. Doesn’t matter; I’m a winner. Suck on that, dark clouds on my horizon.

Speaking of dark clouds, I just checked the weather. Hope I stocked up on sunshine; we are in for a long stretch of rain and possible snow (which we haven’t seen yet in Rotterdam). I’ve got a better chance to stay dry today than any other day before (and including) my appointment, so I should see if I can find the oomph to figure out how to get to the counseling center. The thought’s crossed my mind to TRUST that I can find it on the day, just start a bit earlier. That’s a whole lot of TRUST – trust that the metros will run on time, trust that I’ll find my connections, trust that I won’t just freak out and have to pull myself aside from the morning rush hour to light up because I’m shaking. Don’t know that I can trust that much. But I feel SO lazy today! Feels like I used up all my jazz yesterday and the day before. Going out in public seems a staggering prospect – a straight up hill climb. Ugh. Get some caffeine in my system.

My head is wandering around free range this morning. In the short interval it took to fill my coffee cup (and roll; I’ll be honest) I went off to future/past land and got myself to cry. Truth is, the memory that triggered my tears is always near the surface of my mind. It still shapes my actions.

It is the memory of a 17 year old girl who really wants to get on stage and act. That is her dream, her passion, everything she wants to be. But her feet hurt. A lot. Sometimes so much she can’t walk for days. Her mother, a nurse, decides the girl should see a podiatrist (foot specialist). The girl goes and works with the doctor for several months. He tapes her feet up every week – taping designed to pull the bones of her toes apart. He thinks her bones are crushing each other, and that is causing the pain. So the girl walks around with taped feet for months, but it doesn’t get much better. The girl asks the doctor what’s happening, will her feet ever be normal again. The doctor says no, that he thinks the girl will be in a wheelchair by the time she is 20. He says he can perform surgery for her, if she wants. The surgery can remove the scar tissue that’s building up, but it can’t fix the problem. The girl is terrified. No one is at that appointment with her. When she gets home and tells her family, no one reacts to the news. It seems no one cares. Her family never discusses this medical condition with her, they never talk about her options.

I didn’t get the surgery. I was so terrified, to be honest, that I stopped seeing that doctor. I pushed myself thru every pain – and trust me, for years it felt like I was walking on crushed glass. I mimicked what my family gave me: I said no more, and treated it like it didn’t exist.

But those words have stuck with me a lifetime: you’ll be in a wheelchair.

Considering how much I sit on my ass, you’d think that wouldn’t bother me so much. But it does. It bothers me unbelievably much. Part of me worries I’ve only delayed the inevitable. That I’m destined for the chair.

*sigh* A few days off my regular pain levels and see what happens? All sorts of shit surfaces. The knot around this disease in my head holds many threads. It’s tied to my family, my self-esteem, my dreams and the dreams I gave up on. It has run through every day of my adult life, and I don’t know exactly how to extract myself from it.

I do know how to slog thru life with it, tho. It’s an unpleasant thought, to be sure. But I’ve been that cat hanging on the limb for so long now I’m used to it. Back to the burn, back to the struggle. Back to hanging.

 

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10 thoughts on “Back to Hanging

  1. I have a lot of admiration for you, life is painful enough without physical pain. I regret leaving my theatre days to go do drugs, but when I read things like this I feel so incredibly selfish because I had the ability to keep going but I chose to abandon it to destroy myself instead. I wouldn’t have a clue to know what’s it’s like to have to give up on the things you love because of physical limitations over mental, I can only relate to the time my right arm was broken so I couldn’t write or draw for weeks. Not even the same thing I know. I hope you continue to hang in there, and I hope you can fulfil a different dream or purpose, you’re an incredibly strong woman, even when you feel at your lowest, you still inspire people with the words you write.

    Liked by 1 person

    1. Thank you, Kim. I did a lot of drugs, too. And drank far too much. At the time, it was the drinking and drugs that was blamed for my ‘lack of follow-through’ (by my family and by myself). Now, looking back, I see it differently. I see the drinking and drugs as part of my reaction to this incident. I was scared; I acted out. Over time, as my condition worsened, I used more drugs to try and feel okay (drinking became impossible; made me hurt more the next day). Which brings me straight to today, where I’m smoking for both emotional stability and pain relief.

      Having RA….most days it’s like wearing one of those lead aprons they put on you at the dentist when you have oral x-rays. Feels like it adds an extra 10-20 pounds to your body. Even if there isn’t pain, it makes you move slow, it weighs you down. Most of the time, I’m just used to it. Those few days of relief I had from my booster injection just served to set me off; it reminded me what it was like to NOT have that weight on me. Unfortunately, RA is progressive. The meds they have these days can help a lot and keep me on my feet for now. But I’ve got a rather aggressive form of it. My medications work well for a while, then I slowly get worse. It takes so long for my condition to degrade that I don’t complain about it; the little stuff just starts to add up until I can’t take it. I’ve been told that’s what my RA will do, and throughout the rest of my life my meds will probably need tinkering. I also know that my condition is worsened by stress and anxiety, so I hope I can get a good balance with all my medications. ❤

      Liked by 1 person

      1. I really hate pressing the like button, I press it obviously because I appreciate what you’re saying, not that I like what you’re going through. I can’t pretend to understand what it’s like to go through that, because I haven’t experienced anything like that before. I have seen my grandma crippled with ra as well as osteo and that was horrible, but she was also the strongest person I knew. My mum currently has a degenerative back disorder which affects her hips and makes it painful to walk or do anything, she’s been packing on weight but it’s really hard to excercise when it’s almost impossible to move without feeling that pain. I am grateful that I haven’t experienced this but I am also grateful to people like you who write about their experiences that reminds me that I am lucky in that sense. Not that I believe you’re a charity case or anything like that, but to be able to live and accept it without it completely destroying you (not that you don’t have a right to feel useless sometimes) is a bravery that some just don’t possess. I hope I didn’t sound patronising at all, sometimes I don’t use the right words to express things :/

        Liked by 1 person

      2. lol! No, Kim, you don’t sound patronizing at all. I understand completely, and sincerely thank you for seeing me as brave. I’m never sure if I’m brave or just in denial…I lived in denial of this disease for so long! But that gives me a kind of strength, too. To know that I was still trying, still limping around even when my RH factor was 187 (they want it between 0-5). I can get thru a lot. And let me tell you – you don’t know what you’re capable of until you confront stuff like this. I would have never thought I could do this for so long. Not back when I was 17. And I’ve had many days of blaming the disease, hating it. I have often wanted it to turn into a person so I could choke it to death. But, just like you, I’ve met people who have the disease even worse than I do. The hands that weren’t born early enough for the new drugs to prevent them from becoming claws. I see that and I think how lucky I am in comparison. And I AM lucky. My hands were doing that, twisting themselves into claws. Three of my fingers went off at about 35% from the knuckles. Then I started on the Enbrel injections, and my fingers straightened out. I’d call that damn lucky.

        Liked by 1 person

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