Habitual tinkering

I think I’m going to like this. I know it’s only day two of my test, but boy is my stomach flatter than it has been for years. So OK, it hasn’t got rid of the pain and discomfort, that would be too much to expect, but I am just that little bit more comfortable. Yesterday evening passed without incident, and although I was still as unsure of how to sit and find comfort, for the first time in several days, I didn’t want to voluntarily explode. It was after my second dose this morning, that I noticed the reduction in my stomach. There were two reasons that I stopped taking Frusemide daily. The first I mentioned yesterday, the possibility of falling unconscious, the second, I only remembered half way through yesterday, all the trips back and forwards to the loo. I know it’s still early days, but so far, so good. I’ll keep you posted.

Life seems to have become, this constant testing ground, continually trying to find that golden answer to whatever our most pressing problem pf the day. It has to be one of the most frustrating parts of being chronically ill. Every time you fix one thing, or, at least, think you have, it will fade into the background as another takes its place on the annoyance scale. It’s like living on a roller coaster, that has an extra trick you can’t see when you first boarded, none of it is solid, it’s all made out of rubber. Try as you might, you are never going to get the upper hand, as the next trick, is already there waiting for you round that next bend. The biggest and most nasty trick it has waiting for you down the line, should that problem, you know, the one you thought you had fixed, should it reappear, that long sought after answer, never works again. After years of battling with this or that, part of me just can’t be bothered dealing with that next battle.

Don’t worry, I’m not talking about giving up, I am just wondering about the logic of continually fighting battles that I never truly win. I have been ill, we believe for just over 30 years. I spent the first 15 years of that time, without any medical help or even their belief, which is when and why, I had to spend my life trying to fix me, just so I could keep going. I used to believe that I was actually good at it, that I had my health sussed. What I didn’t know then, was the truth of what was wrong with me, that there was never going to be a consistency to what was happening. I didn’t know or understand, that my life was going to be spent in an eternal state of flux. To be fair, I didn’t even understand that when I was given a diagnosis. To me, my understanding of illness was something very straight forward, it does x, y, and z. I didn’t understand that it was even possible that x,y, and z, wasn’t the end, but actually only the start. It isn’t only MS that does this, the more I read other people’s blogs, the more I see the same story, mixed in amongst their words, because, our battles aren’t just with our symptoms, but with the lifestyles we’re forced to live.

Even right now, when on the surface, I am fighting once again with the issues surrounding my half dead intestine. I am also fighting with the fatigue that my “cure” is already causing. The pain and the difficulties that just getting from here, to the bathroom creates, as I have to get there before I wet myself. I’m forcing a bladder that doesn’t bother talk to me, to do more than it normally does and trying to tempt muscles that long ago gave up, to work long enough to get there. Two issues, comfort, and the desire not to be sick, has once more put me in the midst of a battlefield. So is it worth all this, is there really a point in fighting it? Is it possible, that just living with the problem, including the swollen stomach, might just be easier than all of this?

Just think how many issues appear in the space of one year. Issues our health has caused, that medicine can’t cure, that we instinctively, go head down and charge at. Would it really be that awful to just let our health, do what it’s going to do, before it moves on and does something else? It’s just a thought, one that I have to personally admit, although clearly I’m the one putting it forward, I don’t know if I could actually do, well not for very long.

My tinkering with my health, and I suspect everyone else’s, isn’t just a desire to stop, cure or change whatever is happening, I think it’s more about a desire to have control over the uncontrollable. Whether it is by diet, exercise, drugs or alternative medicine, we tinker. Sometimes, we have a modicum of success, we pat ourselves on our backs and tell ourselves “we have control.” If we’re lucky, our success might last days, weeks or even years, but the truth of incurable illness is just that, it’s not cured, not controlled and it’s just waiting. We turn that next corner and there it is again, all of it, just as horrid, just as monstrous and just as in control of us, as it always has been.

Just like many of my posts, chronic illness has a beginning, an unclear middle and, a somewhat fuzzy looking end. Stuck here in the murky middle isn’t the easiest place to be. I’ve done all the tests, all the treatments, the switching of drugs, all the things my doctor advised, and here I am sitting waiting for the end, or not. You see, that’s the thing about the middle, no one knows how big the middle is. Just like my altering midriff, it seems to expand and contract all the time. So as far as I can see, which without my glasses isn’t far, I have quite a lot of tinkering time left to do, and as I’m a creature of habit, trust me, 30 years is a lot of habits forming time, I can’t see me changing my tinkering, anytime soon.

Of course our tinkering has a purpose. It isn’t just habit, although, that plays a huge role, but most of all, it allows us to kid ourselves that we have that control. Even our doctors play the exact same game, they play it with us in full knowledge of the truth. They pat themselves on the back, because they’ve once again they’ve found the answer to our latest problem. We pat thier backs, for taking away whatever it was, that annoyed us enough to make us visit them. We pat ourselves on the back, because once more we have control, with or without our doctors help. Our doctors, though, quietly wait, as they know we will be back. We wait quietly, as we know we’re also be back, as our health never gives us eternal peace. The true point of all of it, isn’t the brief control, but the fact that psycologically we feel better, and that’s always going to be our biggest battle of all.

 

Please read my blog from 2 years ago today – 24/02/2014 – Learning steps

I had an amazing response to the post I wrote a couple of days ago where I posed the possibility that trauma and abuse could be at the trigger to autoimmune conditions. So many just confirmed what I believe……

 

 

 

 

4 thoughts on “Habitual tinkering

  1. You hit on some interesting points. Tinkering with what is ‘natural’ in a sense- must the body just see it through ? interesting idea. My bet friend and my mother in law to be have MS. It is a horrific illness. I don’t know how they manage to fight a new battle cropping up nearly everyday. I admire you .Hope you start to feel a bit less crap and more or less stable soon x

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  2. I’M SORRY YOU’RE HAVING A BAD DAY. BUT IT NEVER STOPS YOU FROM WRITING SUCH IMPORTANT INFORMATION, FOR THOSE OF US WHO LIVE IN DIFFERENT, YET THE SAME, PAINFUL LIVES. IN CANADA WE HAVE CREAMS FOR THE ITCHES.IT HAS TO BE PRESCRIBED BY A G.P .I GET ITCHES BUT NOT FOR THE SAME REASON OR AS PAINFUL AS YOU DO.I HAVE SCARS FROM MY FINGERNAILS,CUTTING MY SKIN RAW.. I HOPE THE REST OF YOUR DAY GETS BETTER.

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  3. I think everyone deludes themselves into thinking they have control. The healthy think they are never going to get like we are. We sure didn’t didn’t think we would get to this point. I’ve been sick on and off all my life, but nothing prepared me for what I’m going through now.
    I would fight, and think things were under control.
    But things change.
    When I lost so much of my independence, that was when I realized I have very little control over my life.
    That’s very hard to accept.

    I have thought about going off my meds and starting over. Seeing what my body would do without them. Is one med causing side effects that make me need another drug?
    I started having seizures a few weeks ago, and they think it may have been caused by a medication that I’ve been on for years.
    I may have permanent damage because of this. A very rare side effect.
    (they could be caused by something else, but I haven’t had one in a week and we have been taking me off this medication)

    Control over our lives? I don’t believe in that.
    Everything is impermanent. Everything changes.
    Control would mean we could keep things the way they are, and we can’t do that.

    Good luck on running to the loo.
    but I’m glad your stomach isn’t as distended.
    Can you tell me why your bladder would not tell me why you would retain so much water? From what you have said, I know your intestines don’t work just right. Is this from MS? Do you always blow up when you eat, do you get really fatigued? (I’m asking this because a friend is having these symptoms and can’t figure out why)

    good morrow to you

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    • My bladder went long before my intestine did, it’s very common with MS. It either just doesn’t tell me, I need to go, or, it won’t empty. I have catheters to use when it won’t empty at all, but they cause other problems. As I said in my post, what fixes one, triggers another. Running to the loo, has been my life for years, but now that I’m wheelchair bound, it is even harder to get there.

      I think the problem isn’t just my bladder expanding due to being full, but general fluid retention throughout my body, especially in my abdomen, causing extra pressure on top of that coming from my guts. Result, I keep wanting to throw up and I can’t breathe. Life is such fun at times 🙂

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