Multiple sclerosis is My Living Hell

MS sensory overload

All posts tagged MS sensory overload by Multiple sclerosis is My Living Hell
  • Posted on

    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

    please remember I suffer with severe cognitive dysfunction this may be a confusing read. no AI written content

    Well, it's that time of the year again when our gardens need to be sorted out, and the demon weed wacker is going to be performing his tricks. Oh yes indeed, my carer is going to be using the chainsaw over the next coming few weeks to chop down all the over-ruelly bushes and bits of tree and detritus in the garden. As you can remember, the Demon Weed Wacker is slightly accident prone. Yes, he has broken many of my tools. Yes, he broke the lawn mower. He broke the various items of electrical drills and power saws. So, should I let him loose with the electric chainsaw? This is what I ask myself. Well, the question is, of course I am. He's a very sensible person and a wonderful man. And he's been absolutely amazing over this past year. And to be honest, I couldn't have not done a lot of what I've done without him around the house and around the garden. Being my carer, I would have to say, if you need one, you live in the southwest. This dude It is the best.

    The thing is, Albertine will not let me use the big electric chainsaw. I said I will sit in my power chair and I will sit in that and use the chainsaw and she has categorically said No chance. So, I am just going to have to look out of the window and see what happens. And be near a phone just in case he chops his leg or arm off. Yes, and the other thing Albertine has ordered a shredder. Yes, this should be fun. To see him using the shredder and I'm betting that the shredder will be knackered within the first couple of hours. But Albertine being Albertine has said, "I'm sure it will be okay." So, we would be waiting to see how he can screw it up. Oh indeed, will he blow it up? Will it refuse to chew it up? I don't know, do you?

    So, the next few weeks are going to be anything but dull. Yes, what with Easter coming up? So I have to get the grandchildren Easter eggs. Well, I don't get any Easter presents because I can't eat chocolate, so there we go. And I don't get offered out for any meals at Easter Christmas or any time of the year because my diet is that of, well, hardly anything. As you well know, chronic illness is not good. Multiple sclerosis has turned me well. More than vegan, I suppose. I'm not vegan by choice, that's for sure. But when you consider I mainly just eat rice and a couple of other things and a couple of eggs, that's it. I suppose I'm not vegan then, am I? Because I eat eggs, so vegetarian then. I don't want to upset anybody.

    I suppose I've been a vegetarian now for over 10 years, 15 years. And before that, on and off for another 5 years. But now the smell of meat really does repulse me and make me feel totally sick. Yes, I cannot handle any smells from the kitchen, any food that has any fat in it or anything like that. So yeah, my diet is really, really bad due to the autonomic dysfunction and the histamine thing. So yeah, it's been a total nightmare. It's been a living hell, but there we go. Every day is a new day as they say, and I have to be so careful.

    I know some people might find this really funny, but I was standing at a local services, not very far from my home. And I was standing near one of those units that pump out the filtration. And you could smell the fat in the air. And the, just the smell of the fat gave me diarrhea. That's how bad it was. So yes, certain smells can give me diarrhea. It is really not very nice. So even smells of washing powders or things like that can give me headaches. It's quite a nightmare, it's the thing now that I can't go into a supermarket anymore. Even if I wanted to go I can't, the smells do for me. I really mean, you know, they push through the smells of pasties and pies from their restaurants. I mean, they smell amazingly nice, but the smells, once they hit my nose, that means the fat. Well, in the nose and out the bummers they say, not very pleasant, so I have to be very careful to the shops I even go into. It's a bloody nightmare, you've got no idea. Some people have no idea what it's like.
    And I know it's not just me, there are thousands upon thousands of people all over the world who can't go into supermarkets because of the smells. It's just something that our senses can't handle if you're slightly super sensitive I suppose.

    I suppose it started many years ago when I first started going into the big supermarket chains and it was the flooring. The flooring I just couldn't look at the flooring my head used to start spinning and going weird and then there were all the smells. It's so many things going on at once my head just could not cope. It's the most unreal thing because I love going into supermarkets, I love going into shops, but alas, I just really can't anymore because I can't take any chances because why the hell would I want to go out and shit my pants in public. It's not a good thing really is it?

    But the thing is, you see, there are so many different hidden illnesses that cause so many different things to happen in the body. Smells can cause havoc. It is quite unreal. And then there are all the issues with certain different foods people cannot eat as well. It's sad really, but it seems that our bodies are not enjoying what we're eating. At the end of the day, if you have a healthier gut, that means it will help your body heal more I believe? So, I think gut health is one of the most important things with chronic illness. Well, that's my opinion anyway.

    Still wishing everybody a happy holidays in the next week ahead, and that things don't get too bothersome. Personally, I hate holidays. I really just see them as a bigger day of inconvenience, to be honest. But then again, that's just my own personal opinion. In fact, I can't remember the last time I went on holiday. Yes, that long ago. I gave up trying to go abroad. It was in the days when I had to take all those big farmer drugs and they wouldn't let you go to certain countries with them or fly with them. So go figure I didn't go to many places. I believe Amsterdam and the Netherlands were one of my most favorite places to go. I would go there for a month at a time. I would save up hard from work and scrimp every last penny and have the holiday of a lifetime there. It was absolutely awesome, myself and Albertine and total freedom to be who we wanted to be. I can remember going into the Bulldog and the Damkring and also Mellow Yellow. They were some pretty amazing coffee shops. I think I can remember the grey area as well, but for me it had to be kadinschis in Amsterdam which provided the best marijuana, that's for sure. I think I might have got the spelling a bit wrong there.

    Still wishing everybody peace, healing, love and light no matter whom ever you are or whatever you are. Happy holidays!

    Warlock Dark Chronic illness survivor, truth-teller, occasional bastard. From My Living Hell (For those who came here by accident: yes, my living hell is real. And yes, we still fight. Every shitty day. With defiance.)

    @goblinbloggeruk - sick@mylivinghell.co.uk
    π’€­π’Š©π’†³ α›žαš±αš¨αš·α›ŸαšΎ α›αš±αš¨αšΎα›‹αš²αšΊαš±α›α›–α›ž ✦ αšΉαš¨α›αš²αšΊα›–αš± π’€Έπ’€­ αš’αšΎα›’α›Ÿαš’αšΎα›ž
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  • Posted on

    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

    Hello fellow humanoids

    So it looks like it's going to be maybe a weekly blog now. Yes, things are not going too well at the moment for me and my MS. Still, at least I will try and do some more. Things are looking a little better, but unfortunately this brain fog just will not let me go. No matter what I do. It seems to be hitting me with an a vengeance I haven't had in a long time.

    The only good news is in three weeks time I get a phone call from my doctor about the results on my week under the heart monitor. Still three weeks time. To me that's okay really because if it was anything to worry about that a God in touch as the test was done over two months ago now. I've got the physio guy coming over again as well. Yes, he's going to give me some exercises to help me, apparently with my issues. Very nice chap, had some very interesting conversations with him, a very switched on person. And certainly did his job well and knew what he was doing.

    So now they've referred me again to the language and speech people. This should be interesting as it's a different hospital in a different county. So we will see what happens. I know where I lived last time. I had a lot of help and the guy who did the therapy was very good indeed.

    Well, the kittens are about four months old, so no longer little innocent kittens, are they? I have never seen so much anarchy in my life as those two kittens. They run absolute riot everywhere. They say, "Yeah, you get it, they're fussy about their food." Yes, unfortunately, we've tried many kitten foods, but alas, they seem to turn their nose up at them. And we've even tried the expensive ones as well, and they turned their noses up at those. So, I don't know. I'm looking forward to when they're six months old and I can feed them adult cat food. Or even other types of food.

    Still, there we go. It's interesting finding cats perched on tops of doors, perched on tops of furniture you'd never thought they'd get the top of. It really is funny, and to see them climbing around as I zoom over trying to pick the kitten up after shelf without knocking everything, it is like unbelievable. It's a complete mindfuck I can tell you. When you're as banged up as I am, trying to get a kitten off something is just like trying to get hold of an electric eel covered in grease. It is neon impossible.

    So, missi and Tiggy run rings around meand my powerchair. And to be fair, they are funny as a funny thing on funny. Yeah, they sort of take my mind off a lot of what I'm going through. In fact, they take my mind off quite a lot of what I'm going through. In fact, I would say these cats are bigger medicine than medicine, to be honest with you. They seem to have this effect of balance in me out, making me laugh, making me smile and just generally making my life a lot happier. So yeah, I still have the pain, I still have the confusion. I still can't walk. Yeah, I'm still stuck in a chair. But hey, at least I'm laughing again. That's more than can be said for earlier on last year when I thought that was it for me, dead man walking.

    So yeah, for me it was the most positive thing I have done in a very, very long time. It was just a point of finding out what animal would be best for me, either a dog or a cat. In the end it turned out to be two cats or kittens and they have helped me immensely. I must say they really have helped me. Cats just seem to have this other sense, this other worldliness about them.

    When I wake up in the morning, who greets me first thing by licking my nose and biting it but tiggy, saying hello and then Missy will come up and she will sniff my nose and rub her nose and my nose and go off and they both say hello to me. They both say hello to me when I roll past and mew and say hello, hello and I'll stop and I'll say hello and we'll all make a fuss and then we'll look at my poor hands and it's a good job I can't feel much because my hands are ripped to shreds. They matter blood everywhere because those cats can really really really really play like there's no tomorrow but hey ho every scratch as a memory as they say but when you get scratched it doesn't hurt until maybe a day later you wash your hands or something. That's the problem with MS you just can't feel much but there we go. That's life I suppose.

    So it's taking me all weekend just to write this. It's Monday morning and I've had no sleep at all on Sunday night. And I feel like absolute hell today. I've got raging pins and needles in my hands and in my throat and yes I'm getting that sharp like stabbing pin in my right eye. Yes how exciting and the tinnitus is really loud this morning as well. So, there go my plans for today and going out and everything that I wanted to do. Yes, the AA man won't be here until I phone up or Albertine phones up. So we can actually take the van out and charge the battery up when it started, but I am feeling so ill it's... I can't be asked to even do this some days. Still, it could be worse. I could be sat in front of the fridge with the door open, getting warm.

    But there is an upside, a very positive side. Since I have had my diagnosis of multiple sclerosis, I have done so much with my life. It is unbelievable. Some things I thought I would never accomplish and that I would never do. And that will be my next blog post. MS isn't the end of your life. It's a new beginning. It will take you down paths you never knew existed. It will be a truthful mind-bending no-holds-barred blog post. And I look forward to doing it.

    Sending everybody peace, healing, love and light no matter who or whom you are.

    Warlock Dark Chronic illness survivor, truth-teller, occasional bastard. From My Living Hell (For those who came here by accident: yes, my living hell is real. And yes, we still fight. Every shitty day. With defiance.)

    @goblinbloggeruk - sick@mylivinghell.co.uk
    π’€­π’Š©π’†³ α›žαš±αš¨αš·α›ŸαšΎ α›αš±αš¨αšΎα›‹αš²αšΊαš±α›α›–α›ž ✦ αšΉαš¨α›αš²αšΊα›–αš± π’€Έπ’€­ αš’αšΎα›’α›Ÿαš’αšΎα›ž
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  • Posted on

    ⚠️ Please read with care: This blog shares personal, sometimes painful experiences. My intention is to support and speak honestly not to harm. I’m not a professional, just someone who understands how hard it can get. If you're struggling, you're not alone please reach out for professional help.

    Unfortunately, I'm in that place. My cognitive dysfunction is so bad. I am having issues doing absolutely anything. So just doing this is kind of... Hardish in a way. So this will probably be one of my disjointed ones I think. Yes, it's about two o'clock and my head is in a complete fog. But I think too much my head just goes... Baaah! Yes, it seems to be in a place like syrup and concrete mixing round and tinnitus. Not being very pleasant. My automatic new mood, dysfunction, whatever you'd like to call it, is really giving me quite hell today. I can't understand why I followed my diet to the letter. Oh well, it's probably MS now giving me a kicking as well. You know how it goes folks, you have one thing wrong with MS season and says "Ah, I'm going to make it 20 times as worse." That's where I am at the moment. So yeah, going to the chemist's nada, even going out the front door nada, feeling like I should just go to bed, stick my head under the covers and just stay there for the rest of my days.

    The feeling of strangulation and the whole left hand side of my body. The feeling of the nerves in the roof of the mouth. Going down the throat. Going down the whole length of your guts down to your bumhole. Every nerve is like a sensor. And if anything goes through, bang, the pain just is unbelievable. Yes. Yes, diet has worked, but something I'm eating has crept in to cause things in my system to go weird again. So I'm going to have to dive through and see why I've eaten over the past few days. Well, is it stress? I don't know. Am I under stress? I don't feel as though I'm under stress. Am I happy? Yes, I'm relatively happy. Am I in a good place? Well, in as good a place as you can be with what I've got. So yeah.

    So it seems today my head and everything else is going to be on a major glitch out. My eyes hurt, my eyes are so sensitive to light at the moment, it's unreal. I can only open one eye, the other eye is so hurty, yes. I believe the MS is deciding to give me a good kicking, I can feel my tongue at the back. It's a tongue in the middle really isn't it, that goes numb. That's the worst thing having a numb tongue, a numb mouth really, that's the crazy thing. People don't understand what that's like, that's just like eating jellignite I suppose. That's how bad it can be, trust me on that. When you've taken a bite of something and you've bitten through your lip or you've bitten through your tongue and there's a bite. My tongue is a nightmare with holes and bits of bitten off over the years and so is my lips in parts.

    So the good news next week I go to trial my new wheelchair but they're not going to let me take it home with me. No, I have to wait for them to bring the wheelchair to me, which I think is rather quite strange but there we go. And that's a one, two, two and a half to three hour trip round trip. I am going to be so done that it's going to be unreal and I just can't understand why they can't do it at my nearest hospital. You know, it's just plain weird, it really is. then at least I hope I will have something I can rely on. As you know the batteries on the three-wheeled scooter of death which I have been using are next to useless and well yes there was a wheelchair and the words of that song and another one bites the dust and another one bites the dust basically.

    I wonder if I'll be able to get the AA out and get that battery done. That's something I wonder about. Well, never mind.

    Still wishing everybody a happy new year, whomever, whatever, and wherever you are.

    Warlock Dark Chronic illness survivor, truth-teller, occasional bastard. From My Living Hell (For those who came here by accident: yes, my living hell is real. And yes, we still fight. Every shitty day. With defiance.)

    @goblinbloggeruk - sick@mylivinghell.co.uk
    π’€­π’Š©π’†³ α›žαš±αš¨αš·α›ŸαšΎ α›αš±αš¨αšΎα›‹αš²αšΊαš±α›α›–α›ž ✦ αšΉαš¨α›αš²αšΊα›–αš± π’€Έπ’€­ αš’αšΎα›’α›Ÿαš’αšΎα›ž
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