living with MS

⚠️ 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 help

Good afternoon fellow humanoids and N H I , an old post updated slightly..

1. What is MS ?

It’s your immune system going feral and chewing through your own wiring like it found an all-you-can-eat nerve buffet. Not split personalities. Not “just fatigue.” It’s your brain playing Whac-A-Mole with itself… and losing.

2. Can you cure it?

A cure? No. We can barely get a clean read on your lesions on a Friday MRI when the machine’s in a mood. What you get instead is a pharmaceutical roulette wheel. Some help. Some don’t. Some make you question your life choices.

3. What causes it?

Official answer: genes, environment, immune dysfunction. Unofficial answer: cosmic indifference with a sense of humour. We don’t fully know. Anyone claiming certainty is selling something.

4. Is brain fog real?

Completely. It’s like thinking through wet cement while someone throws logic puzzles at your face. You’re not losing intelligence. Your signal just keeps dropping mid-sentence.

5. Will I die from it?

Usually not. But you might feel like you’re dying trying to justify your condition to systems that measure illness in paperwork, not reality.

6. Can I still have sex?

Yes. Bodies still want what they want. But nerves misfire. Sensations go rogue. Some things disappear, others show up uninvited. It becomes less choreography, more improvisation.

7. Is MS the same for everyone?

Not even close. MS behaves like a drunk cartographer drawing new maps on your nervous system every week. No pattern. No fairness. Just custom chaos.

8. What are relapses like?

They arrive unannounced. One day you’re functional. The next, your leg, vision, or bladder has filed for independence. It’s not gradual. It’s a system crash.

9. Why am I so tired?

Because your brain is rerouting signals through damaged circuits 24/7. Fatigue isn’t sleepiness. It’s your internal processor overheating just to keep you upright.

10. Will people understand?

Rarely. Unless they live it, most people reduce it to something smaller, safer, easier to dismiss. You’ll learn quickly who listens and who translates your reality into convenience.

11. Is stress bad for it?

Yes. Stress fuels MS like petrol on a fire. And ironically, managing MS is inherently stressful. That’s the loop.

12. Can I drink alcohol?

You can. Whether your balance, coordination, and dignity agree is another matter. It’s a gamble every time.

13. Is it all in my head?

Yes… in the literal sense. Brain, spine, optic nerves, autonomic systems. It’s all part of the same battlefield. But imaginary? Not even remotely.

14. Will I lose my memory?

Maybe. Cognitive changes happen. Some subtle, some not. You adapt, compensate, and occasionally forget why you walked into a room.

15. Do the drugs help?

Some slow progression. Some reduce relapses. Some come with side effects that feel like their own side quest. It’s not a cure. It’s damage control.

16. How do I explain it to people?

You can try. Or you can conserve energy and let misunderstanding exist without constantly fighting it. Not every ignorance deserves a lecture.

17. Can I still work?

Depends on the day, the job, and how your nervous system feels about cooperating. Some days you function. Some days you simulate functionality well enough to pass.

18. Will I still be me?

Yes. But altered. Hardened. Adapted. Same core, different operating conditions.

19. Does it ever stop?

MS doesn’t follow neat endings. It fluctuates, stalls, surges, retreats. What does change is how you navigate it.

Closing Note

MS isn’t poetic. It isn’t inspirational by default. It’s disruptive, unpredictable, and deeply personal.

But clarity helps. And sometimes the blunt version is the only one that works.

“Fatigue isn’t sleepiness. It’s system failure.”

so I'm sending you all out there peace-healing love and light, no matter whom or whatever you are, or wherever you are in this world,or even in other realities

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 𒀭𒊩𒆳 ᛞᚱᚨᚷᛟᚾ ᛏᚱᚨᚾᛋᚲᚺᚱᛁᛖᛞ ✦ ᚹᚨᛏᚲᚺᛖᚱ 𒀸𒀭 ᚢᚾᛒᛟᚢᚾᛞ

⚠️ 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

A deeply personal story about life with multiple sclerosis, resilience, and why awareness must go beyond a single week.

Good afternoon fellow humanoids and nhi. It appears I have been living under a stone. It is MS Awareness Week. Indeed, yes it is. There is a problem though. It should be awareness all year round and not for one week of a year. Yeah? I think many of you would agree that there should be awareness about MS and all illnesses and all chronic illnesses. Not just for one week or just one day of a year. People should care all year. Why just for one week? It doesn't make any sense whatsoever does it really?

It's all very well. Some people who have MS, like myself, find it difficult to go on all these activities that everybody else seems to be able to go and do. I for one just don't have the energy anymore and I'm in a power chair and why would I want to go and do archery of all things. Now I couldn't even pull the string bow back. That's how bad things are with me and hell I'm retired now as well. My body is completely fucked. Why would I want to go doing things to make myself feel worse? No I don't.

So yes, I can appreciate some people with MS can do these activities, but there are a lot who can't. And I think probably we feel maybe a little bit left out somehow, because there's no MS groups anymore anywhere. People with MS don't go to meet anywhere. And does the MS nurse say, "Oh, I know, let's start an MS group up for people to go and meet once a month." You know, that would be a nice thing, but those sorts of things don't happen, do they? I think people would like to meet up and have a bit of fun, have a chat and just generally have a couple of hours of unabashed fun. Why not? You know, not just being stuck at home 24/7 doing nothing and being left to rot. But that's only my personal opinion.

There are many things I have had to give up because of multiple sclerosis, some of the things I dearly loved doing So yes, I tried to live on the edge up until I retired. I suppose I was a bit of a rebel. I was a bit of an outlaw. I did things my way. I always have. I'm not one of the sheep. I'm not one of the crowd. I'm an individual. I have a voice. Yes, and I'm different and I'm eccentric and I am very proud of that fact. I ripped my blinkers off many years ago.

I am still learning many many things. Yes, I am and I'm having a great deal of fun learning. I'm using my mind. Yes, I have severe brain fogs and yes, I have severe tinnitus and it is very challenging indeed for me, but I'm never going to give up, even if I can only do ten minutes in a day or even an hour in a day. That is an achievement. Doing a blog post is also an achievement for me as well. Going out, just the local shop, is an achievement for me as well. So yeah, things for me are pretty bad having progressive MS and also this autoimmune dysfunction, which means I can't go out in the summer now because of the histamine from the flowers etc... Well, the hay fever stuff. So there we go. I can't win.

But what I am doing, I am constantly evolving and changing my life around, so as my multiple sclerosis progresses, I progress in ways of trying to make my life better. So it may take away my motorcycle riding at the age of 65. Yeah, now that was a complete blast, I can tell you. Yeah, ha ha. But it was an 1100 trike I had specially built. and I managed to stay on the road with that for about 20 years. So that was a way of staying on a motorcycle. And yes, I even joined a few motorcycle trike clubs as well and got involved in clubs and all sorts of different weird things. But there we go. I did not let my illness stop me. In fact, my illness spurred me on further and further to be more than I was even.

So now, it's the computer and doing all the other things that I like doing as well. And I'm still learning and that makes me happy. So yeah, as long as I take it steady and don't overdo it, I think things might be okay. But I don't know the meaning of take it easy, so I always end up overdoing it or hurting myself. You know, that's just one of the things when you have in bought up like me, when you see something that might need doing, you do it. And well, when you're say 20, 25, 30, easy job, but when you're 66, Yeah, it's easier said than done.

So my words to everybody is, having a chronic illness, for me, has changed my life, perversely, for the better in some ways, but I will say, I'm never giving up, I'm gonna carry on fighting 'til the bitter end. And yeah, I'm not gonna let it beat me.

Still wishing everybody that reads this blog, peace, healing, love and light, no matter whomever or whatever you are, in the world or universe or multiverses even.

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 𒀭𒊩𒆳 ᛞᚱᚨᚷᛟᚾ ᛏᚱᚨᚾᛋᚲᚺᚱᛁᛖᛞ ✦ ᚹᚨᛏᚲᚺᛖᚱ 𒀸𒀭 ᚢᚾᛒᛟᚢᚾᛞ

⚠️ 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 find ourselves again thinking about having a spoken word blog, no less on Spotify. I tried doing was quite disappointing. But then again, I'm learning. It didn't help that I was suffering with massive cognitive dysfunction and brain fog. And you know what that's like. It creeps up on you and bang before you know where you are. You just can't remember what you're doing. It's the most weirdest of feelings. Well, anyway, it's taken me now a month and a half to two months just to get my Spotify account sorted out. So let's hope that my living hell, multiple sclerosis blog will be going verbal as they say soon.

I've been wondering about what I shall talk about or speak about on the blog. And I thought, well, I'm just going to talk about common sense things and just talk about things that people want to hear. It's not going to be sanitised. It's going to be the real truth told by somebody who has faced the MRI scans, and I've had issues with catheters, stuff like that, stupid things, injections, white coat syndrome. It's all sorts of things that I've been through and people I know have been through, all the gaslighting and everything. I want an open talking blog that I can put out where people can listen and understand that they're not alone and that there are other people out there who can understand the suffering that they are going through themselves and offer help and show that they are not alone in this fight that they are fighting, the fight of their lives, which is multiple sclerosis and chronic illness in general.

The reason that I have been using a lot of AI in my writings is that my spelling and punctuation and sentencing structure is out of this world. Unfortunately, AI changes my words and the very construct I am talking about and it sort of sanitizes everything to the point of why you are not really helping me. So everything is from now on going to be non AI. Yeah, I know. I have just found out AI is holding me back not helping me forwards in my blog and in my thinking and in my writing. AI is a good tool but unfortunately it isn't something that I find that will help me with the words that I want to put on paper as my words are all unapologetic and I don't want it sanitized anymore. I'm fed up with being kept quiet.

Still, three eye-atlas or whatever has gone past and... well, I suppose we're gonna wait for the gas tail to cover us in magic fairy dust. But we weren't invaded by more awning aliens and we didn't see any more moon or weird probes or anything strange. So I guess it's a big nothing burger. Well, that's what I thought it was and I tried to do some experimentation on my body and I've still got multiple sclerosis and I haven't become 5D or anything weird or strange. This is quite unreal. It'd be quite a lot of people who've had their paradigm smashed by people who say things that just really never pan out. Sad really.

It's Friday afternoon and the sun has actually come out for a change and I'm looking out the window and it's still, well, bluish sky and some nice big white puffy clouds. It seems that the storms in the southwest are passing over. Yes, it's been very cold. It has caused me many problems, but there we go. I was thinking about getting the three-wheeled trolley of death out to go to the local voodoo voodoo-woodoo shop, but I thought, nah, what's the point?

No, my luck, it's gonna start raining. Oh, and the battery update, the battery is well. They're not lasting very well. It seems charge them up fully, next day they're down to 75% overnight. Oh dear me, I'll be glad when they do batteries that actually do what they say on the label. That will make a great change. Anyway, that's me gone. My brain fog has hit me so hard and I'm having sort of weird issues with all the other symptoms I'm having to do with this other thing I'm going through and to be fair, I'll be glad when that's all sorted out, but it is taking quite a time as everything usually does because you don't just go in asking about what you think you've got wrong with you, you've got to know what you've got and then you've got to research it and then the doctors you've got to explain to them you've researched it, bloody, bloody, blah and the doctor looked at you as though saying, well you shouldn't be researching it on the internet and then what does he do? Because he looks at it upon Google. Yeah, that's a bit sort of weird, isn't it?

Still I've got to say I've got some very good doctors at the moment and that's what counts isn't it? But there we go, have a good weekend until I can post again and not using AI you're going to find lots of mistakes everywhere. Ha ha, it should be good fun.

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 𒀭𒊩𒆳 ᛞᚱᚨᚷᛟᚾ ᛏᚱᚨᚾᛋᚲᚺᚱᛁᛖᛞ ✦ ᚹᚨᛏᚲᚺᛖᚱ 𒀸𒀭 ᚢᚾᛒᛟᚢᚾᛞ

⚠️ 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.

The Day SoundCloud Broke Me

So yes, I decided I was going to do a spoken blog. A podcast, as the young ones call it. I thought, I know SoundCloud! It sounded cool, right? Took me the better part of a day just to work out how to get the bloody thing working. My head felt like porridge. Thick, slow, and slightly burnt.

And here’s the kicker there were no proper help files. None. Just endless “click here” nonsense that didn’t tell you what any of it meant. Categories? Forget it. I wanted something like health, MS, disability, ranting man in a power chair but apparently, SoundCloud only understands “hip-hop” and “deep house”.

In the end, I managed to upload it. Two listens. And those two were me and Albertine. Brilliant.

The Fogged Mind vs The Digital Void

Trying to navigate software while your brain is busy running Windows 95 on half a stick of RAM is pure torture. Years ago, I’d have breezed through this. Now? My brain hits that cognitive wall and just slams shut. Pain behind the eyes, words disappearing mid-sentence, kittens mewing somewhere in the background and I’m shouting at my computer like it owes me rent.

And this is where I admit it: technology beats me sometimes. Not because I’m stupid. Not because I’ve lost interest. But because MS eats focus like a vampire eats virgins.

Onward, to Spotify (or Madness)

So, next plan: I’m going to try Spotify for Podcasters. Maybe it’ll work. Maybe it’ll eat my brain again. But I’ve come this far, and I’m not about to stop now.

Because this voice my voice deserves to be heard. Even if it’s fogged, cracked, and full of swear words that my editing AI politely erases.

To anyone out there who actually knows what they’re doing and can help me you are my hero. There will be a special place for you in My Living Hell, complete with eternal gratitude and possibly biscuits.

For now, I’ll just sit here, hurting, tired, kittens mewing, brain screaming, and muttering to myself like an old wizard fighting a Wi-Fi demon.

Because that’s life with MS. You fight the fog, the pain, and sometimes, SoundCloud itself.

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 𒀭𒊩𒆳 ᛞᚱᚨᚷᛟᚾ ᛏᚱᚨᚾᛋᚲᚺᚱᛁᛖᛞ ✦ ᚹᚨᛏᚲᚺᛖᚱ 𒀸𒀭 ᚢᚾᛒᛟᚢᚾᛞ

⚠️ 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.

When Your Brain Betrays You Before Your Legs Do

Multiple sclerosis has a knack for picking the cruellest, most intimate places to steal from you. People expect the visible the limp, the cane, the visible fatigue. Those feel negotiable: you buy different shoes, you learn new routes, you ask someone to carry the groceries. The invisible theft is nastier, because it takes things you don’t know how to replace: the steady line of your thoughts, the little plug that supplies the right word, the sense that you are the same person you were yesterday.

Let’s be blunt: cognitive changes in MS are terrifying. They are not a failure of will. They are not melodrama. They are neurologic reality. And they hurt in a way that doesn’t leave bruises but hollows you out.

What it feels like - Thought drift: mid-sentence, your mind steps out for a cigarette and forgets to come back. You re-read the same paragraph three times and still miss the point. - Word loss: it’s not just “on the tip of my tongue.” It’s watching language implode. Proper names vanish; everyday words hide like shy pets. - Slowed processing: decisions that used to be automatic now come wrapped in molasses. You have to consciously unspool what used to be seamless. - Short-term memory gaps: you can hold a story for decades but forget why you walked into the kitchen. - Emotional ripple effects: shame, anger, grief — often louder than the cognitive symptoms themselves.

Why this terrifies us Because our identity lives in memory and in the continuity of thought. When that continuity fractures, you don’t just lose a function — you lose the scaffolding that holds who you are. For everyone who’s felt this: the panic, the grief, the small, private funerals for who you used to be — it’s valid.

How to live with it (practical, not patronizing) These are not miracles. They’re tools, routines, and tiny rebellions that let you keep building a functioning life when the wiring is noisy.

• Externalize memory

  • Notes everywhere: short, clear labels. Notebooks, sticky notes, digital note apps — pick one and stick to it.
  • Use alarms and timers for appointments, meds, and transitions.
  • Photo prompts: snap pics of things you want to remember (where you parked, what you brought to an event).

• Structure decisions

  • Reduce friction: pre-plan meals, outfits, and errands.
  • Decision rules: limit choices (two outfits only; one grocery list template).
  • Routines become Armor: mornings and evenings on autopilot save cognitive energy.

• Chunk tasks

  • Break things into 10–20 minute blocks.
  • Use checklists with visible progress markers.
  • Allow micro-breaks — short rests reset attention.

• Communicate with intent

  • Tell trusted people what’s happening in simple terms: concrete examples and specific asks help.
  • Use one-liners when you need help: “I need extra time,” “Please remind me in 10 minutes.”

• Use tools that fit you

  • Voice memos for ideas that evaporate.
  • Text-to-speech and speech-to-text when reading or writing is hard.
  • Calendar-sharing with a partner or friend.

• Train, gently

  • Cognitive rehab and occupational therapy can help re-train strategies; they’re not magic but they work for some people.
  • Brain games? Use them as gentle practice, not cures.

• Prioritize sleep and manage energy

  • Fatigue amplifies cognitive issues. Rest strategically.
  • Learn your “best hours” and schedule demanding tasks then.

• Manage the emotional impact

  • Let yourself grieve. Anger and panic are normal reactions, not failures.
  • Find a place to be raw: a journal, a private blog, a therapist, or a safe online community.
  • Celebrate tiny wins. Remember that progress isn’t always linear.

When you need to make hard choices Some losses demand adjustments: job changes, shifting responsibilities, planning for legal and financial contingencies. Those conversations are brutal but practical. Put important documents in order, name a trusted person for support, and consider professional advice early rather than waiting until a crisis.

Words to live by when it’s darkest - You are more than a symptom set. Cognitive changes do not erase your core worth. - Small systems beat big intentions. A single alarm is more useful than a perfect plan you can’t remember. - Humor helps when it can — and if it doesn’t, that’s fine. Crying is a strategy sometimes.

You are not alone This is not a vanity project or an isolated tragedy. Many of us know that fog, and we learn to navigate it together — trading tips, commiserations, and the occasional dark joke. If writing back at MS is your rebellion, keep writing. If whispering the small facts into your phone keeps your day tethered, do that. If you need to scream into a pillow, scream.

MS can take things. It will not get your entire story unless you let it. Keep the notebooks, the alarms, the friends who check in, and the words you refuse to lose. Keep writing, because every sentence you manage is a victory, and every honest post a beacon for someone else lost in the fog. Not today, MS. Not today.

I write in ink and fury, in breath and broken bone.
Through storm and silence, I survive. That is the crime and the miracle.

𒀭𒊩𒆳 ᚹᚨᚱᛚᛟᚲ ᛞᚨᚱᚲ ✦ 𒀭𒊩𒆳 ᚹᚨᛏᚲᚺᛖᚱ ᚨᛗᛟᚾᚷ ᚹᚨᛏᚲᚺᛖᚱᛋ

⚠️ 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.

Apparently, if you’re disabled, you’re only allowed to exist under one condition: Poor. Meek. Sad. Apologising for existing.

That’s the script. Stick to it and you get pity points. Step outside it, and suddenly society glitches like a 90s Windows PC trying to run Doom Eternal.

Want a garden? Selfish. Go on holiday? Fraud. Dress nicely? Suspicious. Cashmere? Criminal. iPhone? Scam artist. Takeaway curry? Witchcraft.

The unspoken rule is this: you are allowed to be disabled only if you serve as a cautionary tale. You’re supposed to sit in the corner like a sad little prop the “what if” nightmare for the healthy.

But god forbid you look happy, stylish, or in control of your own life. Because then the crowd has to face the truth: disability doesn’t mean half-human. And they hate that.

This is why benefits are designed to keep us broke. This is why policy treats independence like a threat. This is why joy, sex, travel, fashion, humour all of it are policed harder than nightclub toilets on a Saturday night.

We break their fantasy every time we live outside their cardboard script. And when we do, they short-circuit. Sparks, smoke, confused faces. Like someone just shoved a fork into their toaster brains.

So here’s my morning reminder: disabled people are not here to make you comfortable. We’re not your tragedy porn. We’re not your inspiration fodder. We’re not going to sit quietly in beige.

We’re going to live, loudly. And if that fries your circuits? Good.

I write in ink and fury, in breath and broken bone.
Through storm and silence, I survive. That is the crime and the miracle.