Staying human

I’ve just completed my first 24 hours on my new tablets. Right now, I have totally mixed feelings about them. Thier called Mebeverine, I wish I knew where they get all these odd names for drugs, not the unpronounceable ones, they are down to the chemical make up, but the other names, that seem to vary from country to country. They make it very hard often to discuss how they work, especially, in this internet world where we can be talking to anyone from anywhere. Anyway, I have already managed to miss one dose, but I took it as soon as I remembered but it does mean, it couldn’t do its full work. The problem is, they aren’t taken at the same time, or anywhere near all the rest of the drugs that I take. Mebeverine has to be taken 20 minutes before meals three times a day. Even for someone with a brain, I am sure many forget them frequently. For someone like me, well, they are a ticking timebomb. Breakfast and lunch I managed fine, dinner time, it was an hour after I ate, before I even thought about them. This morning, well breakfast was 20 minutes late, which I have a feeling might just be what will happen a lot going forwards.

In many ways, I’m not sure if this first day is a truly fair test, as I following my 24 hour fast after my night of being sick, of course, means that my whole intestinal flow hasn’t settled properly yet. Three days had past without going to the loo until today, as my body doesn’t like it when things don’t happen just as they should. Nor is it helped by the fact that I haven’t really been feeling totally myself over that period. I’m not sure how to describe it, other than just odd. There’s been a lot of chest pain, breathing issues, and a huge and almost constant desire to lie down, as I feel somewhat light headed. New meds on top, well as I say, not the best test. On the good side, the pain felt less during the evening, but I woke once again with pain in my back and down my upper legs, that didn’t leave me, until three hours later, when I went to the loo. Ever since then, the pain in my upper abdomen has been bad. So do they work, well I’m really not sure, but they clearly don’t work the way that I wanted them to.

Life seems to be frenetic just now. Between my health being more active, the problems with getting to actually see a doctor and then just for fun, life threw something else on top of all of it. Yesterday morning, before Adam went to work, he told me that the washing machine had broken overnight. So yesterday afternoon, I had to go online and buy another one. I know that isn’t difficult these days, but it’s always one of those extra hassles, that life seems to find. In the past twelve months, we have already had to buy a new fridge freezer, new mattress, and a new cooker, now it’s the washing machine, what next.

I always thought that one of the joys of buying online was that you can totally avoid those annoying shop staff who try to sell you a ton of stuff on top, that you don’t need or want. Well, I was wrong. The phone rang this morning and there she was, all chirpy and smiling down the line. Her breezy good morning, her whole way of going over where we lived and then went into telling me the details of the machine I had bought, but nothing about it being on its way. I feel really guilty now for what I did next. I had already naturally stuttered and muddled my words a couple of times, and I saw a window, a way out of having to go through all that I didn’t want. I stopped her dead, and stuttered and stammered through the following. “I’m sorry, I’m not taking all this in, I have an illness that affects my brain, email me, please?” My acting skills are clearly honed, as I was patting myself on the back all the way through it. I have lived for so long hearing it, that putting it on, was easy, too easy and so wrong of me. She went straight to the end of the call and confirmed that our machine would be here in two days, exactly as I already knew.

I have only used my health in that way a handful of times. Every time I have done so, I have always felt guilty. It’s a guilt that I can’t help, as it feels so wrong of me, so wrong to make out that my health is worse than it really is, in that instant. Putting it on is just so wrong when you have spent your entire life, trying to cover it up. It’s wrong, because if I gave into the temptation at that second, might it just become too easy, to do such a thing. It’s wrong because, yes, that is where I am at my worst and might be, all the time in the future, but not now, not in this second. It’s wrong because I know without a doubt that there are people out there who don’t need to put it on, to push all the bad buttons, that’s their life and they so wish that it wasn’t. Yet, I did it. I just couldn’t be bothered listening to someone who I knew, was going to try and sell me insurance that I don’t want. I didn’t want to be on that phone because the phone freaks me out, I did it because I wanted to be anywhere, but on the phone. But that doesn’t make it right, so I feel guilty about it.

Chronic illness makes us feel guilty over so many things, from the occasions when we invited to attend, but genuinely couldn’t. To the ones we were invited to but used our health as an excuse not to go. It makes us feel guilty because we can’t go out with our partners, that their lives are tied to ours and what that means for them. We’re guilty about not being able to work, to contribute to both home and society. For sitting still, day in day out, watching out bodies turn into flab and being unable to do anything about it. Guilty for doing nothing, while we watch our partners do all the things we once did. It doesn’t matter what others say, how many times you’re told you’re being silly, that you can’t help how things are, you still feel it. Every time they fetch and carry for us, wait on us, aid us and care for us, there is always that guilt, as it shouldn’t be this way.

Guilt comes in so many different sizes, and from so many different places, but whatever the size of the pain that it causes, it always hurts. Unlike other pains, there is no magic pills to take, no relaxation or meditation, this is one pain that’s there, and even when you think it is gone, something always reminds us, and there it is again. It’s that pain that reminds us we’re still human, that we’re people who have hearts and care, that we have a conscience. It doesn’t matter how ill we become, all of those things remain true, all of them never just vanish. Our health may eat away at our bodies and brains, there are a million things that we have long forgotten, but somehow, we never forget how to be human. For us, it just makes life harder, but for those around us, it’s probably a good thing. Guilt is our monitor, our governor that keeps us being us, and removes the temptation to be, or do, anything else.


Please read my blog from 2 years ago today – 11/03/2014 – Hope dashed

I was listening to the news this morning as I always do when an article about MS and a new drug that has just been licensed in Scotland. I should have known before I even looked on Google that there would be some reason why this drug like so many others, would be of no use to me at all. It has happened time and time again, drugs appear and all too many of them are purely for relapse-remitting MS, so when I started to read and saw that it actually was for my type progressive relapsing my heart lifted and I set off to read the medical descriptions…..