Multiple sclerosis is My Living Hell

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    ⚠️ 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

    And a very good afternoon to all my fellow humanoids and NHI readers. Oh indeed yes. and welcome to my blog on this overcast afternoon. Well, to be honest, it's been quite a strange few days. So, I bet you're all wanting to hear what happened with the doctor's phone call. Yes, well I shall explain it to you now and I think you might be slightly surprised.

    You haven't been registered with neurology for over five years

    So, apparently, when I spoke to the doctor, the doctor was very concerned indeed. When I told him I hadn't seen a neurologist for over five years, he then informed me that I didn't have a neurologist. I said to him, "What do you mean?" He said, "Well, it seems as though you just don't have a neurologist." I said, "Well, I have an MS nurse." He said, "Yes, you have an MS nurse, but you do not have a neurologist." And this has been the problem. So, I haven't had a neurologist for over five years, and the thing is, nobody has told me. So now, the cue for the Neurology Department at my local hospital is over a year.

    Worsening symptoms

    My neurological emergency was before Christmas and it is getting severely worse. Yes, the doctor is listening to me, but the MS nurse apparently has been gaslighting me for what seems to be five years according to the doctor. And I would suppose that's why in five years I've never had an appointment with a neurologist even though I've asked for one. So it seems somewhere along the line they've taken me off their books. How about that and never even bothered to inform me?

    The DR sorts it out !

    So now I'm having to get my doctor to sort all this mess out. So it seems that someone has been gaslighting me and it seems I've been taken off the neurology team's records at the hospital. Which is rather alarming because over the past five years I have had several major attacks that have caused the ambulance to be called and severe heart issues etc etc. I don't want to go into all that at this time but you can see where I'm coming from. I know what the problem is with me but they will not acknowledge it. They won't even speak to me. And the worst thing is I know why this has happened and I know why it is happening.

    I pissed my neurologist off being a lifestyle biker.

    Obviously, I must have pissed off my neurologist, what, five, six, seven years ago, just before COVID. The thing was I've got very long hair. I've got a very long beard and I'm an ex what you call lifestyle Biker one of the ones that you wouldn't want to take home to your mother Long hair, you know the sort the ones that are true fun that don't cause harm to anybody There are lovable big teddy bear type people So you get it, I wear old leathers and old jeans and when I went to see my neurologist all those years ago I was in my bike club gear and I had an 1100 Yamaha dragster and he did not like that and he did not like me and he took an instant dislike to me or so it seemed. But ever since that event, I used to see him at an outreach center, but he refused to go to the outreach center, and I refused to go to the main hospital, which was a long way off. And I couldn't get there because of my multiple sclerosis, funnily enough, So, I was supposed to go to the main hospital. And after that event, I hadn't heard hair no hide of that neurologist since. So I think he took me off the books on that very day and he never told me. because every time I phoned up the MS nurse for help, she never has referred me to the neurologist or to speak to the neurologist. It's like I was being gas-lighed and I never had an appointment with Progressive MS.

    Medical marijuana and a biker lol

    And another thing he didn't like was I'm in a wheelchair. And because I'm in a wheelchair and smoke medical cannabis, And I also refused to take all the drugs they offered me due to all the horrendous side effects that I'd suffered many years earlier. he didn't like that either. So there we go. It's a case of I didn't fit his paradigm and his paradigm was not going to shift for me. So hopefully he'll retire soon. He basically said that because I was in a wheelchair, he wasn't going to give me any of the nice new drugs, You know get out the wheelchair. I'll give you all the shiny nice new drugs He said because I refused to get out of the wheelchair And refused to go on that paradigm He didn't like that at all..

    I must be a complete moron, people can't understand what I'm saying.

    So there I was telling him my balance is completely shot. I Go over I can't use sticks. I'm out of breath because I've well he won't listen to me He's just interested in pumping me full of drugs and get me out of the wheelchair. I could not believe that it really did my head in well anyway, I am and unfortunately have severe reactions to practically all of the big pharma medical drugs and That's a shame

    Medical marijuana, my life's saver.

    So for over 20 years, I have been smoking marijuana and for four of those years I have been smoking medical marijuana and that is the only thing that has helped me along with the THC CBD oil with my MS, my spasms, my spasticity, the pain and quite a lot of the other things that happen as well. So yeah, you know, there is seemingly, I couldn't take their big drugs, they didn't like me, so there we go. So you tell me what you think, the guy obviously didn't like me, so you know, that's life. I remember sitting there asking him and I told him, I said, "Look, I smoked marijuana." And if I get busted by the police, would you back me for smoking the marijuana? And he did not like that whatsoever. It really did his head in. Well that was what, that was probably eight odd years ago. So you can imagine the hell I've been going through. And now I'm coming closer toward the end of all of this and we will see what the outcome will be in the next few weeks hopefully.

    What I get from all of this.

    If you are like me and you are different, or you are weird, or you're into something, or you dress differently, or you think differently, we all think differently and we're all different. Now, I think no two people are the same. And what I get from all of this, I was plainly not liked for the person who I was. I was a victim. He obviously didn't like the look of me, he didn't like me totally and it really did show. So yeah, I always say never judge the book by its cover, but what you find these days is everybody judges the book by the cover, which I think is blatantly unfair in this today's society.

    Three-wheeled trolley of death!

    Well, I've greased all the bearings, I've tightened all the nuts, and it seems to be going quite well. I've also solved the grip problem as well by getting some grip tape put on the wheels, and hopefully that will help it with the grip issue that it does have. I'm also carrying around a pump and some liquid to put in the tire just in case I get another flat tire as well. Hopefully soon the new safety additions to my mobility scooter will arrive. I will be challenging viper storm to a race lol Yes, it will look a bit yellow or greener. I've got some see me tape because it's what we need to do really to be seen and to be safe because if you can't be seen and those mobility scooters are rather sort of small, aren't they?

    bigger and better scooters

    I don't know why they can't build bigger mobility scooters with a bigger engine, maybe a really small three-wheeled Robin Reliant with an electric engine in might do the trick, something that wouldn't do over say 30 or 40 miles an hour. That would be awesome, something really cheap but I don't think about that do they? If they did I reckon they could come up with some great ideas but unfortunately it's all about governments and rules and regulations isn't it? So we can be waiting for years to get a decent scooter that can do what we really want.

    arghhh shredddder and chainsaw hell

    Still, on a lighter note, all the garden has been done. We had a friend come over and help us with the shredding and doing a bit of chain sawing and all the work's been done and everything is looking glorious in the garden. Unfortunately, I will not be able to benefit from the garden due to my autonomic dysfunction and the histamine intolerance that I have, which is pretty brutal, at the moment and in the height of the summer is even more brutal.

    Still wishing everybody peace healing, love and light, no matter who, what, and wherever you are, on this planet, that planet, this realm, that realm, or wherever, have the most wonderful of weeks ahead.

    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
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