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…….

 

 

 

 

Home adaption

I managed to get the details for Teressa yesterday and the streaming of the wedding isn’t until 2:15 pm so with my OT appointment being set for 10:15, 4 hours before, it should be fine for them being on the same day. I will be totally wiped out by it I am sure but I really don’t want to wait another 11 months, if they put me back to the end of the queue. John, Teressa’s fiance will arrive in the UK on Friday morning, on Saturday they are hiring a car to drive up to Scotland to stay with her step brother and will be coming here to see us before the wedding. I saw the weather last night and I am a little worried that their idea of driving from London to Glasgow may not be the best but it is still a week away and things change. I have to say this as to many it will sound really strange, but with her in her 30’s and despite being divorced, this will be the first of her boyfriends I will have actually met. With her jet setting around the world from aged 11 it isn’t so surprising. Everything seems so rushed now, but I suppose if you think that Government department move quickly, and plan on their speed, then things get rushed after they actually do act. But it is all systems set to go now and I just hope all their plans workout as they are clearly hoping.

I did some more thinking last night about the OT and what help I want from them, one I am definitely going to mention is my bed, yesterday afternoon I again pulled the muscles in my forearm, I think it happens because of the way I have to have my hand twisted to get hold of the toppers, add in the pulling of my weight, and there is a recipe for things going wrong. I hadn’t really spoken to Adam about this all until last night, at first I don’t think he realised all the little bits and pieces, like different cushions for at my PC and for the settee. At the minute he moves them from one place to another as the larger cushion, that came from my wheelchair originally, is really heavy. What I am using just now isn’t right for either place really, and were a fill in set up, I though for a couple of months. What I have to have though, is cushions that won’t let the sores come back again, they weren’t any fun and I don’t want a repeat that is for sure. I accepted a long time ago, before I was housebound that the rest of my life would contain pain in my backside and legs, but when you know there are cushions out there that would relieve it, although probably not remove, it doesn’t seem fair that you have to live without them.

I did one of my walks round the house again, checking where help in the form of grab bars might help and once again hit the problems that where I want them, I just can’t have them. I know I could do with on in the hall, half way from the living room to everywhere, but it would have to go right above the only heater we have in the entire flat. When it is on at full as it is right now, a grab rail would be unusable as no one would be able to hold on to it. In the entire bathroom there is only one place a grab rail could be fitted and that is in the shower, the long wall between the door and the toilet there is nowhere at all until I reach the loo, where I don’t need one. When I designed the bathroom I had a raised toilet fitted which means that I have no problems there at all. The room I often have the most problems in is actually the kitchen and the problem is caused by it’s size. If I walked round the outer edge along the route the counters take, then fine, but I am like everyone else on the planet, I want to cross the space from one side to another. Once launched I keep going, but frequently have a wobble part of the way across, my fault, I know. Our home is such that I just don’t see how much more help can be built into it, it was never built for a disabled person and is totally un-wheelchair friendly as well. Once I become unable to walk, well I will be bedbound just as those would lived here when it was built would have been, but those are the problems of living in a wonderful house, rather than a modern house.

When the OT does get here I will ask her what she thinks can be done to help me, but I will warn her first of one thing, moving any of my crystal is not an option, after that, I will listen to what she has to say. If she can sort out the two main problems I will be a lot happier, and as to the rest well apart from rebuilding my entire house, which they won’t, I actually don’t see what they can do for me. Maybe I will be pleasantly surprised and my negative feelings are there simply because I have been let down so many times by people who hold out a branch of hope, just to pull it away again, especially OT’s.