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……

This isn’t me

Stupid. That’s just how I feel and it is probably one of feeling that binds all of us with a chronic illness together. It doesn’t matter what is wrong with us, there will be elements of it whether it’s through dropping things, not being able to remember or the tears that run all too easily, we land up at some point, feeling stupid. I for one can tick the boxes beside all of those examples, and I am sure if I sat for a while and thought, I could come up with several more. Last night, I once again found myself believing that we were on a different day. Adam had come home at lunchtime, he is off work until Tuesday but is going to his Mums on Sunday, as it’s Mother’s day.

Knowing all this, is one thing, being able to live in a day that isn’t normal, isn’t. I was confused and I set up our TV viewing while Adam was out of the room fetching my evening G&T. I don’t fully know if I like my evening Gin because it’s alcohol, or if it is the invisible effect it has when mixed with my drug, or simply out of ritual. All I know, is I hate being without it. Anyway, I have digressed. I was confused long before it arrived. Most evenings, we have programmes we watch because of the day of the week, not because it’s when it’s broadcast. Yes, we have joined the rest of the world. Not totally, there are still some the TV companies dictate, but we’re getting there. After an hour of viewing, we flicked the TV back the BBC One, while we went to fetch my drugs. It was then, that I felt stupid. There was Eastenders. Despite checking and double checking the listings, I had made a mess of it yet again. How can I read the details, off the screen in front of me, yet not see it? How can I do this again and again and again, but still get it wrong?

Adam repeatedly tells me it doesn’t matter, at first, he seemed to think that I was upset about missing the show, of course, I’m not. I’m not that stupid, I do know about the I-player. It has nothing to do with missing anything, but everything to do with the fact my brain is running away from me, faster and faster. With ever step that it takes, that feeling of being stupid is growing and handling that feeling, is also getting harder. I can’t any longer just brush it aside as I used to. If I could, I wouldn’t be writing this, this wouldn’t be the subject of today’s post.

It doesn’t matter how ill we are, what doctor’s say about us and what other see, just like I said in yesterday’s post, we still expect our bodies and minds to work. There is a huge difference between things that a physical aid can help us with and those things. we can’t now do, but we would expect a 7-year-old to be able to do. Wether you miss your mouth when trying to eat, or miss programme the TV, they are things that are so simple, that there is no other feeling we can be left with, other than feeling stupid. You might think that it’s just because it is clear and has been witnessed, but it isn’t any different when there is no one here to see it. I know some people will have thought that it’s just embarrassing, well it is, but it has far more to do with the feeling we are useless.

When your life has been chipped away at. When you have changed from a vibrant intelligent woman, into someone too stupid to be left alone with a remote control,how would you feel? When you have been the person who took DIY from plastering to decorative features with ease, but can’t even install a suction cup grab bar because you don’t have the strength, how would you feel? Falling over is physical, people fall over all that time, But when you can’t take a single step without being in danger, how would you feel? When you find yourself lying on the ground, unable to roll over, crawl or stand up, how would you feel? When letters and telephone calls scare the hell out of you, how would you feel? When you can’t make it through your own home in time to not wet yourself, how would you feel? And so it goes on, stupid is totally an unavoidable feeling.

So how do you deal with it? To be honest, I don’t really know. Yes, I can brush it aside and say it’s just one of those things. I can do all of the logical steps that as an adult, means it rationalised and makes sense of it. I can tell myself that yet again, my body is failing me and it’s not my fault, but deeper inside, I still feel stupid. Why? Because I quite honestly don’t know what else to feel. From childhood on, if we do something like any of the above, we are told we are being stupid. I can still hear both my Mother and my Father telling me to “Stop being so stupid”. When you go to school your teachers tell you just the same things, so “stupid” is engraved in us. It’s a place where we have been told is a bad place to be, no one wants to be singled out, no one wants to be “stupid”.

Being permanently ill, brings so many things with it that we can deal with on a rational level, but it also brings much that is the complete opposite. Where you put those feeling and how you handle them matters, but no one counsels you on exactly how to do that. Each of us has to work out for ourselves just how we do that. I for one, write, this is my first post purely about it, but you will find tiny pieces hidden in different ways, as until now, I wasn’t ready to stand up and say “I’m stupid” or even “I feel stupid”, quite so loudly. None of us want to be here and I know without a doubt, there are millions out there who know exactly what I am talking about. The frustration we feel, the disbelief that despite all we have done to avoid those triggers that leave us feeling this way, yet we’re here, again. The self-anger and disappointment just grow and if we don’t find a way of dealing with it, it will only get worse. Not only do I write, when appropriate, I’m now vocal about it. Last night I didn’t hang my head in shame, I let it out and I pointed it out as well and by doing so, it took the blame off me, and put it where it belonged, with my health.

There is much that shows me that my brain damage is growing. I don’t need any more tests, I know it’s failing me and it’s just getting worse. I can either just feel more and more “stupid”, or I can be honest about it to myself and to those around me. This isn’t me, and that’s something I have to remember every time that word tries to appear in my head. I’m not “stupid”.

 

Please read my blog from 2 years ago today – To work or not

Just raising the mattress last night by 4 inches meant I woke this morning without any pain in my back or lungs, the answer was there just waiting for my stupid brain to catch up with it. For somebody that used to be paid for having an analytical and creative brain, it really is a bad show, to say the least. Yesterday was my normal day for the shopping from Asda to arrive, the delivery guy was one who comes here a lot and we have talked about all kinds of things in the past few years. Just as…….