progressive MS struggles

⚠️ 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. some AI written content

Well, it's the weekend, a very good weekend to everyone, fellow humanoids and that you are all feeling as well as you can be. Yes, the weather seems to be still quite warm here in the southwest and as it's not quite the heatwave, it is pleasantly warm outside. I was going to chance a trip on the three-wheel trolley of death, but I thought no I better not because it's going to be Saturday and it's going to be really busy on the roads. And I can't be asked to go riding around on my speedy 8 mile an hour. Power chair of death or whatever you'd like to call it pissing people off. I just keep that for in the week lol.. But to be fair, the motorists around here are all fantastic. I have not had a problem, and they are all very courteous.

Yes, I have overdone it this past week and I am now starting to pay for it. I can feel that brain fog starting to roll in. You know, like the tide just slowly coming in. Just bathing over you then, bang, that's it. I really should know better, but the problem is trying to stop pushing myself to do things. That's a major issue with me, I'm afraid, and I suppose I really should go with it, but yeah, I suppose the way I was brought up was different. Well kinda carried on with stuff even if we were... Well, yeah. That's the problem. Getting out of that old paradigm, I suppose.

I suppose I have pushed myself to the very extreme, the very limits of my health boundaries. And to be honest with you, it was not worth it. Trust me, you can push yourself far and then you can push yourself that little bit further. And my God, you will pay for it. I know I have over the years. So, when they say, "Work sets you free," well, for some people, yes, work does set you free, but unfortunately for some of us, work cannot ever set us free. More is the pity, to be honest with you. I suppose the point I'm trying to make is never overdo it. Always know your limits and know your limitations as that's when all the accidents start to happen.

Yes, I know I've been there. I have had many accidents due to my stupidity at believing I could still do what I used to be able to do. When I didn't have this MS affliction, or was as bad, I've managed to break every toe on my feet and big toe toes. I've managed to break both my shoulders. I've managed to brake various bones over my body falling into things and whatnot. I have managed to rip muscles off bones. I've badly sprained, pulled muscles. My God, I have hurt myself so badly. I even ripped all the muscles off my left hand side. I was trying to lift something too heavy. I learnt my lesson, trust me, many years ago. All because of my own stupidity. All because I thought nah I don't need a stick. Nah I don't need a wheelchair. Nah I'll be okay. Yeah ha ha. Famous last words I can tell you that.

Because I was in the old mindset, not my new mindset that I have had for the past year or so. Yes, people, I changed my total mindset. My old mindset was destroying me and my life. So, yeah, a total change of mindset at 66 and retired. Well, it may have taken that many years, but it was certainly well worth it. If you can't handle the fire, don't jump in the hot frying pan as they say. Or as my dad would say, "That'll come right. It'll be about right," he say.

So last year was a real eye-opener for me, losing my dad and my mum. That was quite a mindfuck. That's for sure. But there we go. And yes all the family that said oh we'll keep in touch with you and all these words of niceness how long do you think it lasted well. Maybe five or ten minutes that was it and then it was all let's put him in the cuboard and leave him there. Poor boy pat him on the head that sort of behavior from family who should really know better.

But to be honest, I'm not really bothered by their behaviour as it's not their fault. It's just the fault of society in general, at the way disabled people are treated. I have found in my life that being disabled, I have been and am still being treated like a second class citizen, or someone who does not exist or someone who does not deserve to exist. But I can shout very loudly and I shout "fuck you, I'm here and what you're going to do about it." And then they usually back off and don't speak to me for over ten years, which is fine with me. lol

So, yeah, people seem to think that being disabled is an easy life, but I can assure you being disabled is not an easy life at all. Having progressive multiple sclerosis and all the extra issues that I have to go through daily 24/7. I can assure you most people couldn't handle a week or even an hour in my shoes. So, yeah, you know, people who want to judge me, people who want to not understand what I am going through, my issues, how I feel. Yeah, people don't think about that, do they? No. People don't think about the other person's feelings. They just go and they just fuck themselves with their stupid, outdated views and moral compass.

But the great thing is, having my own blog, I can have my voice heard by others, who also have some of the same issues that I go through. The killness isn't just multiple sclerosis, it is a kaleidoscope of other illnesses. I will get the AI to put in some of input here, I think, about that.

Here’s a concise list of chronic illnesses that often co-occur with or are similar in impact to multiple sclerosis (MS). Use these to illustrate the “kaleidoscope” of conditions you can face:

Neurological autoimmune conditions: neuromyelitis optica spectrum disorder (NMOSD), transverse myelitis, chronic inflammatory demyelinating polyneuropathy (CIDP), myasthenia gravis

Autoimmune diseases: lupus (SLE), rheumatoid arthritis, Sjögren’s syndrome, Hashimoto’s thyroiditis, Graves’ disease

Chronic pain & fatigue syndromes: fibromyalgia, chronic fatigue syndrome / myalgic encephalomyelitis (CFS/ME)

Small-fiber & autonomic neuropathies: peripheral neuropathy, small-fiber neuropathy, postural orthostatic tachycardia syndrome (POTS)

Gastrointestinal chronic conditions: Crohn’s disease, ulcerative colitis, celiac disease, irritable bowel syndrome (IBS)

Endocrine/metabolic disorders: type 1 diabetes, adrenal insufficiency Respiratory chronic diseases: asthma, chronic obstructive pulmonary disease (COPD)

Cardiovascular chronic conditions: hypertension, chronic heart failure Kidney & urinary: chronic kidney disease, interstitial cystitis

Skin & connective tissue: psoriasis, eczema, systemic sclerosis (scleroderma), Ehlers–Danlos syndrome (hypermobile type)

Mental health & neuropsychiatric: major depressive disorder, generalized anxiety disorder, bipolar disorder

Neurodegenerative disorders: Parkinson’s disease, early-onset dementia Blood & immune: chronic Lyme disease (post-treatment Lyme symptoms), chronic infections (e.g., HIV with long-term effects)

Others commonly overlapping: migraine (chronic), sleep disorders (insomnia, sleep apnea), chemical sensitivities/mast cell activation syndrome (MCAS)

thanks Ai for that.....

But when you do look at that list, it is to say the least absolutely stunning mind blowing. I have a few of those issues on the list...

Still, let's hope that you made some sense of all of this. I don't know if I did or not. Still wishing everybody healing, love, light and peace. And yes, no matter who or whatever you are. No matter 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.)

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