Life can be chronic: most of the time!

Having just read a blog on living with constant pain, I’ve decided to briefly write about my own experience.

I can only talk from my own perspective, but I’ll try and quickly explain how I feel, at present. As you know, I have chronic pain. The levels vary, but it’s always there, to some degree and rarely simmering on a low burner.

After many trials with various painkillers and following a quick rise through to the Premier League table of pain, I currently take Oromorph and Pregablin, amongst other things, and am on the ceiling amount of the latter. I cope, but some days I’m in absolute agony. I don’t exactly feel hunky dory about my situation, which in itself, is separate from the pain.

My situation stops me from doing many, or most, of the “normal” things I used to do and can’t work, but I’m working on that! I try to immerse myself in films, writing, or something mundane, almost as a mantra to combat the pain and it saves me from the evils of daytime telly! The worst thing is that I find myself struggling to do the stuff I really enjoy and am often zonked out, to a point where my comatose state stops me from doing anything. My sleep pattern, or lack of one, doesn’t help, either. I’ve played guitar, for years, now and made a living out of it, at a few points, but I now struggle, due to the numbness in my hands and pain in my fingers. When I’m able to recline comfortably enough to hold the guitar, I try to have a go. I find, now, that I can’t press the strings down properly and my fingers curl into a fist now. I don’t know why, but my new specialist thinks that I may have discs out further up my spine, in my neck, which radiate down to my hands and fingers. The twats! However, despite this, I’ve recently risen to the challenge of a good friend, Mike, who lives over the pond. I’ve videoed myself playing, badly and singing even more badly, but he’s taught me to enjoy that moment of playing and not worrying too much about the buzzing and slow chord changes, stuff that could really depress me, if I thought about it too much. Sometimes, I can’t do it and I’m struggling to play some songs I used to play without thinking! Ho hum!

I don’t feel clinically depressed about the whole thing, though. Don’t get me wrong, when the pain kicks in and my defenses are down, it attacks and I feel like I can’t live like this, anymore. I do have bad mood swings; get frustrated, sometimes about the smallest things; feel down about the fact that I don’t see any friends anymore; worry about my future and if this can be cured, or if I may get worse (I try not to think about that); hate that I’ve become, almost, totally dependent on my girlfriend and my boys, need a carer, when they’re not around and struggle to even get out of bed; think that someone’s having a laugh at my expense, because I’ve even struggled to use my wheelchair, over the last seven/eight months, or so, due to an impinged shoulder; become despondent, stupidly so, that I’m grossly overweight, now and am currently taking Orlistat, to help (they’re the tablets that stop your body from absorbing fat and expel it in such a way, you’d think you’ve been eating curry for breakfast, dinner and tea, leaving an orange, oily film around the bowl, for good measure! I, thankfully, haven’t been caught short, yet, but the fact that I keep forgetting to take the tablets may have something to do with that!); feel sad and frustrated that I have, absolutely, no libido, at the moment and can’t seem to remember where I left it; chastise myself for being an awful whinger; and, also, become annoyed about the state of the country and why this government are screwing people into the ground (that’s a whole different story!).

I can’t plan too much, because I never know how bad I’m going to be. The only places I go, when I’m well enough to sit in my wheelchair, apart from docs and that, are to St. James’ Park, to watch the match, and The Stand Comedy Club, in Newcastle. The staff are superb there and, if I can’t go to a particular show, they keep my money in a personal account to allow me to use it for the next time. It’s little things, like that, that make all the difference.

Despite all of this and much more, besides, I reckon that the panic attacks, anxiety and depression that I feel for unrelated issues, that have nothing to do with my physical state, or conditions, are far worse and much harder to deal with. I came very close to be sectioned, but as I lay on the kitchen floor, in the fetal position, expelling some form of primal scream, after having completely lost control of my senses, through sheer frustration, I took the phone call and told the person on the cold, white end of the line that I wasn’t going to consent to being locked away and said, that, as I had reached one of my lowest points, I was determined that the only way to go, was up and that I’d try to rise back up myself.

I’m nowhere near back up to the surface, yet, but just hanging on by my good, strong arm and am on some form of medication to help keep me there. I can’t even remember what I’m on! My short term memory has been shot to shit. I don’t know if they’re working. I think they must be, but wonder if I’m managing to cope now?! I don’t know. My doc doesn’t want me coming off the meds. I know he’s right. I even wonder if being in constant, chronic pain helps me with this condition that’s been thrown at me, because I have something else to worry about! Perhaps! I’ve developed coping mechanisms, since I was seven. Not always successfully, but I didn’t know black from white until recently, so I’ve basically wandered about, aimlessly, for most of my life. If I get a bad episode, or a major relapse, I don’t know how I’ll cope, on top of everything else. I suppose I’ll just have to. I keep thinking about my kids and know that I never want to hurt, or leave them and there’s my girlfriend, as well! I wouldn’t ever want to hurt her, either and not just because she does so much for me. Shouldn’t I be thinking about being positive and doing it for myself, though? Probably. I kind of am, now.

I’ve come to the ramparts and stand alongside my meds. I’ve moved on from most of what’s happened and I’m able to talk about it, in a personal, but, almost, detached way, now and am preparing to write about everything, geet big warts and all. I worry that no one will read it, or, indeed, if anyone will bother to read this, but I suppose I’m writing to myself. I need to be in the right frame of mind and I don’t want my memories tainted by my current position, but, as Sean Kelly, the World Number One cyclist once said to me: “I will see how it will go!”

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10 thoughts on “Life can be chronic: most of the time!

  1. Xx I dont need to publicly declare my feelings, you already know. You amaze me everyday though, with how you just keep on going and never stop trying! Xx

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  2. Try and find something, anything to be grateful for each day and really focus in on that. A beautiful sunset, a sweet car u got to see, could b a bird that u don’t usually see. Nature is what I look to.
    When u go to the doc have someone go w u to take notes, it’s so easy to forget what was said or what u wanted to say.
    Good luck, keep on keeping on.

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    1. Thank you, MaryAnne. I am grateful for many things. I’m not despondent. I live in fear of brown envelopes from our fantastic, wonderful and caring government, who will want me and many others to, almost literally jump through hoops, for them, but they’re not having me. I have more than many know and, in many respects, I’m the richest man on earth, not literally, though! x

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  3. Try not to be fearful of brown envelopes, although I can empathise. 😊 keep writing your blog and remember you are not alone In your journey. And out governent is out of touch, to put it politely. xxx

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