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…….





12 thoughts on “This isn’t me

  1. Wow!! if we were anymore alike It would be scary except I dont have an “Adam” anymore Mine walked out in 2009 after 18 yrs of marriage We’d been together for almost 22 yrs and as long as I had CFS/me Guess he was just sick of me being sick Cant have a nightly G&T anymore either lost my house living in friends basement She doesnt allow alcohol could be worse I could be living in my car😒

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  2. I don’t know what to say but I wanted to acknowledge your post – yet again, I see so much of myself in what you’ve written. I appreciate how much you share, and I know it doesn’t change what is happening to you or how you feel about it, but I just wanted to say that you help others so much by writing this blog – probably more than you even know.

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  3. I say it too many times a day to count. I’m told just as many times, ” it’s not fault, you have a disease you didn’t ask for.” Still doesn’t make me feel any better about myself. I don’t know to relearn my brain.


    • I wish I knew the answer for all of us. It’s hard when you slowly lose the ability to do things you once did without a seconds thought. I keep telling myself that one day, thanks to my bad memory, I will forget that I ever knew anything else. Well, surely there has to be some perks to not being able to remember. LOL 😀

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  4. I, myself, have Chronic Illness. Mainly Migraines plus the disease I was born with. My husband is teaching me not to be so negative over this or anything. I love your blog and can totally connect.

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    • Thank you for reading. It’s easy to say, it’s not our fault, it’s believing it is the problem. Putting a positive spin on things, is something I think I’m quite good at doing, it fails badly when I have just broken something I love. Stay strong, we’ll get there one day 🙂

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      • I have absolutely no idea what I’ll be doing..Lol. I did think that this would be a good idea for charting my life now though. It’s a diary for me and if it helps someone to understand their symptoms or the ones they care for, a higher power gave me MS for a reason. So I’m going to help myself and maybe someone else. Like you do. I have hopes to be an inspiration as you are. I’ll never be as good as you and I’m just going to be me, like you. I truly do love who you are Pamela. The person. I hate what you’re going through. Having to plan ahead for your time to fly with the angels, but I agree whole heartedly. My brain works just like yours. I have to know to understand and I always have to plan ahead. Thank god you have Adam. He LOVES YOU. He believes in you and he wants to take care of you.

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  5. Ah, yes! I can really resonate with your post. I still expect to be able to do the things that I’ve been able to do for years, and it’s so frustrating to realize that I can’t. But you’re right–fight that self-talk! You are not stupid, not at all. You are a beautiful, strong human being. Blessings on your day!

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