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How To Deal With Pain When Pain Is All There Is

Sunday, January 21, 2018

I did too much. Last night, after watching some weight loss stuff, I got to thinking, 'If I can hula hoop for 30 min, surely I could walk! I have got to stop babying myself...I have been laying here enough hours for recovery!'

And so, after not having walked anywhere really for about 5 or 6 months, I got up and walked 20 minutes, only 24 hours after hitting my new hula hoop time of 30 min. Which should have been the easiest thing in the world. Before I got sick, I used to walk 8 miles a day. And halfway in, I was fine, if shaky, and thought, wow, what happened to my life? I have forgotten everything I ever had. I heard people laughing around the neighborhood. People were having parties, cooking late night food. On vacation. I can barely remember what any of that is like. I barely remember what it's like to have a family, to go to work, to go out with friends, to have fun. I am in constant pain all the time now, so nothing I like feels like fun. It just feels like more pain. So I had this moment at least of recognition of how small my life has become since I got sick nearly a decade ago, how completely everything in it has changed. How little I recognize myself. And then, in my eternal optimism, I went too far, so to walk all the way back was suddenly too hard. My hips and legs gave out, and I started to limp heavily. I started having trouble getting my heart to work, which is typical with this disease, and then the pain became so great I almost couldn't move forward anymore. I though perhaps the best I could do was lie down on the ground in the dark until morning, and hope nothing poisonous bites me. I wasn't that far from home, but it might as well have been hundreds of miles. I had my phone on me, but this illness is too humiliating, too rare... nobody understands. And I would have been slurring my words anyway and not able to be understood. I would rather just lie in a ditch than deal with people I don't know seeing me that way, and trying to help something they have no clue how to help with. Pitying me. Which I hate worse than feeling sick.

Eventually, I managed to wrench my body forward, in incredible pain, all the way back in the dark. The brain inflammation got much worse, and the fever increased. The pain was horrific all night, and I tossed and turned, only sleeping for maybe 2 hours - just long enough to have a terrifying nightmare.

Today, I can't get out of bed. My brain feels like it's going to explode. No matter how many medications I take, I can't make myself feel any better. I managed to get some water, and an ice pack for my spinal cord, which tends to help the brain inflammation. I am in terrible pain in every joint of my body, in my skin, in my bones. If I sit still for a moment and don't distract myself with something, I start to cry. I don't even know how I have the cognition to type this, as usually when I am so ill I can't physically type, nor think or spell worth a damn. I can't read or go back and edit though, so hopefully this makes sense. And oh well if it doesn't. I'm not really sure why I'm writing this. I guess I'm just trying to help the day pass, because every hour I wait until I have to go back to sleep again (which probably also will not be fun) is excruciating.

I'm ok with dying. I've long since accepted it. But what I'm not ok with, is lingering like this for weeks, months, years... never having a clear prognosis, never getting better, not necessarily getting worse, always suffering. I don't expect a lot. I don't expect the life I used to have. But, it doesn't seem possible to have fun like this, when all I can do is try to survive and pass the next 2, 4, 7, 9, 13... minutes, not actually getting anything done in my life from the huge list of things that need doing, just feeling like I'm wasting this precious opportunity to be breathing and still HERE. I'm glad to be here. I just want to be more conscious, more able while I do so. The pressure and searing pain in my brain is so bad I feel like I might vomit. I don't want to stop typing, because then I'll have to feel it. I think that was why I went walking last night too, to have a distraction from the pain. I thought it would be a healthy distraction. And for normal healthy people, it would be. But not for someone like me. I had a few years to be young and athletic before this happened. I'm really glad I got to have them.

If I can get some sleep, tomorrow will be better. Maybe I'll even get something done. But if not, I don't know what this week will be like.

I had this great idea of improving life every single week, for 25 weeks. Of checking in weekly and seeing where I am. But after only a single day, I'm already wondering how one even improves when pain is all there is. Like, my life is not super great, even if I was not in extreme physical pain. This illness has caused everything I ever cared about to crumble and fall away from my life. In a strange way, I am grateful to be able to write about it. It's all I can do today, and there have been many many days in the past decade when I could not do that much. It keeps me living. But I don't have a lot of nice thoughts to distract me, or comforting or fun things to think about that make the pain less intense. This whole 25-week plan was to try to help me change that. I thought it would be really simple to start out with a short walk, so I have a memory of leaving my home. But that was apparently too ambitious. Maybe if I was only out for 5 minutes, or 10, the reaction wouldn't have been so severe? Don't know.

I have a lot of things I want to do. I want to move all over the world. I want to hike mountains again, to do new things, to meet new people. I want to do more than lie in the same room day after day. Thinking about it all, isn't really fun, it's just frustrating. Because maybe I will never get to do those things. If lying down wasn't so painful, I wouldn't even mind so much. If breathing didn't make me nauseous.

I did accomplish some things this past week, prior to starting this new program. I did do the hula hopping successfully. I did make money. Both were very big accomplishments for me. They don't feel like anything right now. They don't lessen the pain or the inflammation at all. They don't fix the disease, or at the moment make it even a little more tolerable. I guess it could be a lot worse, I could be in the hospital right now, like before, and I'm not. I could have NOT had that progress, and be obsessing about bills again like I was just last week. Maybe I just need some time for it to sink in. Maybe I need to slow down and not expect so much, so fast. Like taking at least a full day of rest in bed before I start the next adventure, even though I hate it.

There is one way of looking at it, that when I had a healthy body I could do an hour of hula, then an hour of walking, after a full long day of hectic work, plus juggle close relationships with people, and still do it all again the next day, and the next day, and the next day. Thinking of it like that, I resent this, it feels like I am doing nothing with my life. But 6 years ago I was in the hospital, unable to walk or sit up at all, unable to type, screaming in pain and no one could help me. Acutely dying. Homeless. Somehow, I lived. I taught myself to walk again. I regained a lot of basics in my life. Now I own a home. Have access to internet. Can think a little. Am happier. Cut a lot of dead weight out of my life that I am glad to have finally realized were people who were only holding me back, not truly wishing the best for me. Life is better. Tons better. This is only a minor setback. Yeah, it's not fun. But, I have to suck it up. It's also not screaming pain hospital dying-in-the-next-30-minutes moment. It's pretty great, compared to that. What I wouldn't have given then, to be here right now. Just in peace and quiet, cranky, but safe for a moment, in my own place with my very own ice pack.

When I was a kid, all I wanted to be able to do was buy my own soap. I was in an abusive household, where I had no control, and nothing including myself belonged to me. I imagined surviving to one day have my own apartment, being a real adult, having the right and ability to go out and buy my own soap. Make my own decision for myself. CHOOSE something for myself. I'm an adult now, and I not only bought my own soap, I bought my own house. Every day, I make choices for myself, because I finally have the freedom and the independence and the right to do so. And, I left a relationship where somebody tried to take that right away from me and control me as an adult, which was the hardest and the best thing I ever did.

So now I've earned the right to be happy, and relaxed about where I am. It's not perfect. But at least it's my own life, not anybody else's. Every day, I get to wake up and choose how I react to it.

Every day, it is the best day ever. Because I get to choose who I am, and no matter what happens to me, nobody can ever change that fact.
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Member Comments About This Blog Post
    I just happened upon your blog through a shared group.

    It's normal, and human, to overdo. I can't do any hula-hooping, so you have that on me. Today my plan was to spark away for awhile, then maybe talk myself out of exercising, even though it's unseasonably warm, & I was talking about going for a hike.

    Now, reading your post, I am motivated to go for that hike, really appreciate it right now, mindfully, that I can do that, even 200+ pounds overweight (but working on going down, yet again).
    Then I will be back here, to reach out, read your story, provide you some support. Light a candle for you too.
    You are right, it sounds like everything is better than it used to be, though maybe not where you want it to be. To be yet? Hopefully we can both live to feel better than we do now. The future might hold more health.
    You've inspired me to go work for it, being mindful of my moments, and of not overdoing it.

    UPDATE: Several hours later, went for my hike. It was harder today, than the other day when I did the same route, and I was much slower, like a half hour slower, and at one point I felt a little dizzy and sick to my stomach. I thought of you/this blog multiple times: when I heard the birds chattering with each other (like I am chattering at you here) and when I felt ill, and when I saw the moon rising, and the colors of the soon to be setting sun. I hoped you were enjoying a view out your window, and thought of how we have different challenges, and how my blind friend can walk but cannot see, and because she cannot see, she cannot easily go for a walk (no dog, has gotten scared doing the cane thing). Anyway, thanks. This post helped me get inspired to do my walking workout, after 3 big fails this week. Helped me overcome my struggle today.
    Lighting a candle, wishing you health and strength and no/less pain.
    758 days ago

    Comment edited on: 1/27/2018 6:51:29 PM
  • BERRY4
    I would highly recommend finding a way to read both of Norman Doidge's books on the brain.


    And the one thing that has helped my son who was in a car accident 5 yrs ago and has been in constant pain ever since--is something called a flotation tank. It's about sensory deprivation and offers hope of changing the signals the brain receives that say PAIN.

    emoticon Hope you can find hope that something can change for the better in your life.
    761 days ago
    I'm so sorry you have this illness, and it sounds miserable. I'd be depressed and frustrated too. And it's so easy to get excited and overdo things.

    Have you contacted ~Indygirl? She had some medical problems and disabilities, but modified her exercise (beginning with exercising in a chair, I think) so that she was able to do something without overdoing it. She's lost 240 lbs thus far.

    Anyway, I thought she might have some good ideas to help you with exercises to start with.

    And I truly hope you find something that helps you - so you can exercise without getting sicker.

    Here's her page, though you'll need to cute and paste:

    763 days ago
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