Multiple Sclerosis, Cognitive Dysfunction, Gut Hell, and Why I Refuse to Quit

⚠️ 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.

So we had the storm. Oh my god, the rain came down like a torrent that you would not believe. It was like Revelation and Armageddon the way that rain came and the way the wind just blew and blew. I could just hear everything clanging and just smashing around outside. I just hope when I go outside later in the power chair that it's nothing too expensive. But such is life when you are living in the Windy south West. A lot of trains have been cancelled and a lot of buses as well. But that's normal around here. And there's power cuts everywhere. That's also normal around here. But they don't last that long, thankfully.

So I also had the local physio around yesterday and he assessed me so that assessment should be interesting, very nice chap indeed, all sorted. Just waiting now for the other people to get in touch with me, hospitals and doctors, etc. I shall give it another couple of days and then I suppose I'm going to have to make some phone calls and see where we are. Or I suppose emails be better. There's nothing like having me on the other end of the phone when I'm in one of my cognitive funks. And I can't think of words. There's nothing more annoying than that I get really annoyed. as when you're trying to find simple words like, I don't, I can't give an example really, but just simple words or sentences or you change what you were talking about midway through and people can't follow what you're talking about sometimes and you find cognitively that you are all over the place. That's what I'm like these days and I have been for quite a long time and I think a lot of people don't realise just how common this is with multiple sclerosis and severe cognitive disorders in general.

So, I have found a bowel hack for MS. Basically, I found that I have been having made for me a flat bread made with all natural ingredients. Natural strong brown flour, you know, a little bit of olive oil, a bit of salt, a bit of yeast, blah blah blah mixed together. And then put on a griddle, blah blah blah with a load of ground linseed in. Now, the hack is linseed makes all you're pooping easier. There is no need for me to take laxatives or to have any gut wrenching medications to make me go. I had so many bowel issues they nearly gave me a colostomy bag, and I said no. And I'm glad I said no to the colostomy bag because I sorted my own issue out.

When you realize with MS, the nerves in the body cause your bowels to get totally fucked up, which causes issues with urination and also with pooing. I have spent most of my life with bowel issues due to MS and that auto whatever it is I've got wrong with me and I can tell you I have never had a period of time where my pooing has been so good and with this complete change of my daily food intake diet making sure there are no histamines in the food I am at last not having bad stomachs acid and I've managed to get my gut health back to some sort of personal semblance so for me personally changes have been long but I now know what I can and cannot eat so I am like a forensic scientist going through a piece of food looking at it seeing what's in it the whole nine yards so yeah diet is so important with chronic illness I did not realize food causes so many issues when you look into it it's an absolute minefield but if I'd have sorted my diet out 20 or 30 or even 40 years ago I don't think I would be as bad as I am now truthfully It's not just looking at labels either. What I've been doing is I've been putting the label through the AI and it's been giving me the total truth on the ingredients and what they do to my autonomic dysfunction in my MS and the causes and how it makes things worse. So yeah, I've gone down to a forensic level on my food diet and I've also done that with my medications as well that I take.

I take nothing that will give me any side effects as unfortunately if there's a side effect on the packet, I get it. You know, my body is hypersensitive due to my condition. But there we go, who would have thought that MS could have caused my heart conditions that I have? You wouldn't. But when your vagus nerve and your automatic or ortomunic dysfunction is going berserk due to histamines, you know, it causes heart issues. I didn't know that, but people, please, please remember this is my own personal journey and remember if you have any symptoms or any weirdness, see your physician or your neuro people or your MS nurse or whomever you speak to. Seek professional help always. Remember that.

And remember MS is a very, very, very scary journey. Anybody who says is not, is a liar. MS has been very scary for me. It's a massive headfuck. It really does fuck with your head and your cognitive issues, you know, the pain, everything. It really does send your head into some very, very strange places. And even I admit here now that it has caused me mental issues and I have even had to seek help due to this. So if you are suffering in any way, you really do seek help. It is something that a lot of people don't talk about. But yes, I have had mental health issues over the last past eight years and I say to people, get help because help is something that will get you out of a place that you have got no need to be in. MS is a cruel mistress, as I say, but don't let it beat you. Always fight it. Treat MS as something that is just plain horrible and just fight it tooth and nail for everything that you are worth. Give it a run for its money like I do.

I try not to let it beat me. Even when you are at your worst, even when you are at your lowest point, even when the pain is so bad that you want to give up, even though everything is crushing you, stick your middle finger up to the MS and say, "Stuff you bastard, you're not going to beat me." Be positive, fight the illness, I know I have for the past 40 odd years, and yeah, it's been hard, it's been harsh, but I tell you what, I wouldn't change my life for anything now, because life is to be lived and it is to learn, and what I have, I accepted a long time ago, and I know my future isn't bright or brilliant, but I've accepted what and who I am.

Yes, I may be marmite man and have no friends, I may say what I think, and I may have a tinfoil hat on, and I may say strange things, and I may see things, but I'm just being me. Hey, let's all just be ourselves .... because we have all had to change our lives and we have all had to adapt in many ways because of our illnesses and the adaption is hard. Yes it is, but we eventually do get there, we eventually do change the way we do things and we change our lives to a life that a person, a normal person wouldn't even recognise. So yeah, we give up everything really, we give up friendships, lives, normal lives, we get looked at funnily, we get laughed at when we're in a wheelchair, get called names even. But I don't really care about all that. I just care about myself and my close family and Albertine. I care about our future and happiness.

Still I send peace, healing, love and light to everyone who reads this and wish them a pleasant weekend when it arrives and let's hope the weather calms down in the southwest of England. Oh yes, and I'm still stuck indoors, still waiting to phone up the AA so I can get rusty one started up so I can take myself down to the wheelchair centre in February and trial out my new wheelchair. The saga goes on but I wouldn't have it any other way.

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.)

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