Multiple sclerosis is My Living Hell

MS relapse symptoms

All posts tagged MS relapse symptoms 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

    Good morning fellow humanoids, the sun is shining brightly through the window yet the clouds are looking dark and it looks like it might start raining soon. So today I'm feeling particularly bad, the autonomic dysfunction is going up a few notches it seems every day. So hopefully I hope that I don't get one of those really terrible attacks like I have been getting every now and again. That puts me into hospital.

    So, as you know, yesterday I got in contact with my doctor about getting an appointment with an immunologist. But alas, I've got to jump through hoops and hoops. And I have to wait to speak to a doctor for a month before I can even ask to see an immunologist. Now this is unbelievable. As I've been waiting to see a neurologist for over five years, and you would have thought after the last massive attack I had in November, things would have been put into motion. But alas, no, it seems as usual it's all fucked up. The thing is the MS nurse told me that the neurologist said I have to go and see a immunologist Yes, so there we go and Now I find myself in this position of why could you not have told me that in November? So now I have to wait a month to see the doctor. I then have to...

    Oh yes. Something else that's just really annoyed me as well. As today I'm feeling particularly unwell and shitty. I sent a letter or email to the MS nurse. Asking for help, but guess what? I have had an email back saying I am on holiday again till Monday, or on leave I suppose. and to get in touch with 1-1-1 if it's urgent. Well, again, I make this point. Why would I want to phone up them when I have a perfectly good MS service that is there to help me? By the time I've explained to 1111 what's wrong with me and what is going on, And then the 1111 service take absolutely hours to get back to you, don't they? Yes, so there we go. So you'll know further forward because they've got to find somebody who is a specialist in MS as well, haven't they? Or autonomic dysfunction. that could take six or seven hours I've been waiting by the telephone, as Debbie Harry would say, and no fucking way.

    I am fed up of putting myself through all of this stress. So, do you know what I'm going to do? I'm just going to do absolutely nothing. What is the point of the MS service? Because to be fair, they're not very good, are they? What's the point of the neurology? Not very good, are they? No. So, as I sit here, slowly fading away into nothingness, I question why I even bother going to the doctors at all now, because they have been no help to me whatsoever. I just sit here and I just suffer and get no help, or the only help they can offer is, 'Oh come and see me in a month's time. I don't want to have to pay Β£55 because I cannot afford it to see a private doctor.' So, yes, I'm just going to have to fucking suffer. Due to the nature of my autonomic dysfunction and all this pollen, I think I'm at the limit of my antihistamine tablets. And guess what? My autonomic dysfunction, histamine levels are going up and up and up. And we know what this means, but no one gives a bloody damn do they?

    So as far as I'm concerned, I'm going to have to go and shut myself in the bedroom, turn the light off and basically just lay there because that's all I'm going to be able to do because to be fair with anybody I'm not going to be able to function soon. That's the pure harsh reality of it all. When the sickness and diarrhea starts, that's probably when I'm going to phone for the ambulance. Because then they will be able to see what I actually go through and my attack and then I'm probably going to be an hospital when it goes off. I am half tempted to just not take any anti histamines and let everything go off end up in hospital and do things that way. I am so sorely tempted that I'm not going to do that. My God, things have got that fucking bad in my life now.
    Still, that's it for now. Wishing everybody healing and peace

    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
    enter image description here

  • 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
    enter image description here

  • 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
    enter image description here