Think again

I started my day today as I do all to often now, with pain in my abdomen. What the rest of my body is telling me, is that I am nowhere near ready to go to the loo. I’ve tried, which was a terribly bad idea, as I now once again have a piece of stool lodged just where I don’t want it, and with no way of shifting it in any direction at all. So many of my muscles no just quite simply don’t have the strength to do what they once did. As little as four years ago, this quite simply wouldn’t have happened. Trust me, it is just as uncomfortable as the very idea of it, but it’s just one of a list of things that just make me feel useless at times.

The other week, I wrote a post about my mother-in-law have just being diagnosed with cancer and how I felt useless when it came to supporting Adam and her, because of my health. That, though, is a type of useless I know without a doubt, everyone on this planet could relate to. But there is another useless that takes the chronically ill, to fully understand.

I used to think I was useless when I couldn’t walk for the ten minutes, it took to get from my house to the bus stop, where I could get a bus to take me to work. Even  more useless when I became unable to walk the length of the call center and to keep working I required a wheelchair. I also remember the first time the shopping was delivered and I could shift the full shopping bags from the hall the kitchen. These are the types of useless that I’m sure anyone with chronic health can relate too. The everyday events that we suddenly find ourselves faced with, and after a lifetime of being able to them all without thought, suddenly we can’t. It doesn’t matter if anyone else is aware of it or not, we feel pathetic and completely useless. There is such a feeling of failure, of being unable to do anything and it just grows, more and more things happen and our list of inability seems to keep growing. It is almost like life is standing over you, with this big pen, and anything that you do, it is just waiting to put a big black line through it, and mark it off as another thing gone, another thing you can’t do.

It’s horrible, and having people telling you it’s OK, doesn’t help in the slightest. Being told it’s expected helps even less, and it appears we are just supposed to get on with it. To not react badly because of it and to just move on. Just because we have a certain condition, just because we are slowly becoming disabled, we’re expected to take it all in our stride, as though nothing has changed.

I remember feeling so many different things. So many different emotions, but most of all, it felt as though I was alone with it all. Yes, I could ask for help and yes, help was given whenever it was needed, but that was a million miles from the point. The point they all seemed to miss with such ease, was that I could no longer do it. Back when my life started slipping away from me, I didn’t have the slightest idea how I was supposed to feel, how I was supposed to react, or even what I was supposed to do so. Those around you look at you with pity, but pity isn’t what you want. Others, try to pretend nothing had changed. They act as though they haven’t noticed that you’ve lost three stone in weight, that’s there’s a nasal gastric tube stretched across your face and are now permanently, sat in a wheelchair. For them, there isn’t a right or a wrong, they are as unsure as we are, but they can walk away and get on with their lives, we can’t. We’re stuck in the middle of it, feeling useless and most of all, lost.

I was good at the bravado, at putting on a face that said to the outside world that I was OK. Now, I realise that was possibly the wrong thing to do, but as we are given no guidelines, no guidance of how to act, of who to confide in, or even who to turn to. We have no choice other than to get on with it, to put up with feeling useless and make the best of things how they are. If I could get out of this house, I know I wouldn’t hold back for a second in telling anyone, what is wrong with me. If I either needed help, or I didn’t like the way they were looking at me, hell yes, I’d tell them that I have MS, total stranger or not.

It doesn’t matter if it is the first time you failed to lift a bag of shopping or it is the millionth time, you still feel useless. The hardest thing to do is to unlearn. It doesn’t matter what age you are when you became ill, you have been learning from the day you were born and that knowledge is vast. Life has taught us that our abilities only ever grow. As a baby, we can pick up a rattle. As a toddler, a toy. By school age, we’re already able to carry our own bag, filled with a tonne of things we don’t need, on top of what we did. As a teenager, we can lift almost anything that an adult can, and we just keep getting stronger, and wiser as to how to lift anything. Now suddenly we’re ill, now we have to unlearn, and not just about what we can lift, that was just an example. Our health means we have to unlearn almost everything, not just about the physical side of life, but quite often mental and psychological, and it’s hard.

To survive in an adult world, we became adults, but we are now expected to continue in that world and we are digressing, stepping slowly backwards into childhood, but we remember what it means and feels to be grown up, even though we are slowly growing down. It isn’t just the physical us that is changing, for many it is their minds, for some it is both. We forget, we forget all the time. The things we once found easy, are becoming harder and harder and there is nothing we can do, but learn to cover it up, to use tricks to keep us functioning and gadgets to replace what we once did with ease. But still, we are expected to survive in an adult world. To be grown up and even more so, to react like one, even thought our chances of feeling useless just grow and grow.

I know without the slightest doubt, that I do things almost daily, that I remember scolding my children for, things I told them to not be so “stupid”, or so “silly” about, yet here I am doing just the same things. Chronic illness is designed to make you feel both of those things and million similar other emotions, and there is no avoiding them. One of the most important things I have taught myself is to not worry about it. So what if my muscles are “useless”, if my brain makes me feel “stupid”, or if I do “silly” things. I can’t stop myself feel that way, but I can stop myself fretting about it. I wish that I had learned that years ago. That I had not spent hour after hour fretting over what went wrong that day, and just had a good nights sleep instead. We are going to get things wrong. Our bodies are going to let us down and our minds will fail, they are facts. Fretting is a choice, and trust me, if you’re still at the start of this process, your health will be so much better if you don’t worry about what is done and gone. In time, you to will feel useless more often that you can count, but it doesn’t mean anything, other than your health is letting you down, not you, your not  letting anyone down.

 

Please read my blog from 2 years ago today – 10/04/2014 – What the Dr didn’t say

I think they call it sods law, I bought the new router the other week and I did have an issue in fitting it, so I reluctantly went back to the old one, the one that I had chucked over the settee in front of me and had bounced it way onto the floor. Luckily it’s flying lesson hadn’t done it any harm what so ever, in fact, it seems it did it some good as it hasn’t lost connection or dipped in speed even once since. So I now have a new router and a new modem, as I needed to replace that as well, all just sitting here with nothing to do, part of me is saying well just change them, you have the new stuff and it’s ready to go, but part of me is also saying why change it now, it’s working and I have a full backup for when the problems start again, which I am sure……

Remove or Keep?

By chance this is the second post that has been sparked by a TV program. We watched the ‘Crime Watch’ special last night and it rang a few bells with me. Two of their stories were linked firstly by the fact the two men were shot by the same killer, but what sparked a conversation between Adam and I was because both didn’t died, but both lost one of their hands due to their injury’s. As you know I lost total use of my left hand a few years ago, both the guys in the program had a choice to try and save their hand or to remove it, they each chose a different solution. I was surprised that Adam agreed with me as I said that if I lost the use of a hand again and it didn’t return my choice would be to have it removed. My reasons are actually quite simple although I know some of you may find it an odd decision on the surface.

To be totally honest a dead hand is more of a danger to you than a help. The appearance, yes is better that it is there, but appearances are not everything. Without it, there is far more that you can safely do than there is with it, the program actually backed that up without saying it in so many words. If you think about it, it makes sense, a dead or useless hand firstly catches on things and with no feeling it gets injured easily. It was getting my dead hand mangled in my wheelchair that led to my becoming housebound. No feeling and no strength, no manual chair. I lost count how many times I found bruises and burns on it, with no knowledge of how they got there. It wasn’t just my wheelchair that it managed to become entangled in and I several time came to a complete stand still and my arm was once again caught. When you loose all sensation, you actually really do not know where it is or what it is doing, I’m not suggesting there were involuntary actions it was not like having something dangling beside you then catching it on doors and so on. These things though were not the worst problems, the worst was it did nothing, I couldn’t grip or pick up, yes with my brace I could put my finger and thumb in the right position but they still didn’t grip. If I was there again, with no chance that it would ever recover to at least were it is now, then I would rather they removed it and gave me a prosthesis. Without nerves I know I wouldn’t be able to move it, but this is where the program confirmed to me that life without a dead hand is better than with.

The guy who chose to keep his hand which meant he had a thumb and two fingers was even after 17 operations still unable to use it for anything and he was facing many more operations with no guarantee that it would ever work. Were as the one who chose to loose his hand had a cap over his stump with a large range of tools he could add to it and was back at work driving a taxi and fishing at the weekend, his hobby, that he never had to give up. To see the two confirmed how I had felt at the time, I was luck I have a reasonable range of use still, although no strength, but I remember often wishing it wasn’t there. I don’t know if a Doctor would even consider doing such an operation but I can honestly say no hand is better than a dead one.