MS fatigue

⚠️ 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

Myself and Albertine braved the outside world this morning. It’s been some time since I’ve actually wanted to go out—so naturally, the universe decided to make it weird.

I dragged myself to the WAV. A WAV? Oh, just a terrifying machine of fraud and deception. It’s a van with a ramp. You know, so us wheelchair folk can daringly leave the house. But sure, call the cops. A disabled person going outside must be running a benefits racket.

Albertine, ever observant, pointed out a sad little scene nearby: a VW Transporter clamped and stickered with a huge “NO TAX PAID” label slapped across it like the scarlet letter. I thought, poor bastard—he's not going to have a good day. Judy Tzuke came on the radio, and I promptly drifted off into a cloud of melancholy '80s nostalgia. Classic distraction technique.

We were off early to dodge the traffic. That failed. We ended up 15 miles down the road to drop off a parcel at a UPS pickup point. We had all the paperwork—like law-abiding goblins—but of course, they wouldn't accept it. Apparently, logic has been abolished. Albertine was not amused. Neither was I.

So off we went in search of a broom and some blood, fish and bone (don’t ask). Jim’s store was next—where they usually stock everything including the Ark of the Covenant and possibly a spare Dalek. Staff there? Absolute legends. Cheerful, helpful, and oddly rock-and-roll. I’m convinced the guy who served me was in The Cult.

By this point, the heat was medieval, and my legs started their traditional performance of “Jelly in a Wind Tunnel.” We turned back for home—well, 15 miles back, as you do. I wasn't driving by then. I felt like death but with worse skin.

We spent the journey dodging speed cameras and holiday invaders. Then came the ambulance incident: some driver got scared, panicked at a crossing with one of those traffic bollards, pulled over, and the ambulance ended up overtaking on our side. Straight at us. We’ve got it on dash cam. Lovely.

And then... ah yes. The infamous chemist.

I rolled up to the giant vending machine of doom, typed in my little code, and the robot began its business. Fun fact: My local chemist now has a drug-dispensing robot. It quietly hands out morphine with a beep and a spin. But god forbid I need pain relief—then it’s forms, suspicion, and a full background check. The machine is trusted. I am not.

Anyway, the carousel spun, made strange noises, and then freaked out. Loud grinding, beeping, flashing lights—like R2-D2 on crack. The pharmacist shouted, “You’ve broken my machine!”

I just looked at her. And laughed. Of course I did. The Goblin strikes again.

To round off the day, I had to fork out £325 (no VAT, lucky me!) for a new wheelchair battery—yes, that’s to replace Albertine’s. Still no word from wheelchair services. I’m stuck. I’m pissed off. And this heat can do one.

I’m totally drained—every spoon spent. Now to hydrate, spark a joint, and marvel at how Windows 11 didn’t crash today. Small victories.

Rock star Jim’s guy, if you’re reading this—your secret’s safe.

But seriously—what a bloody day.

     “The views in this post are based on my personal  
        experience. I do not intend harm, only honesty.”   

            “By ink and breath and sacred rage, I write.
                     By storm and silence, I survive.”

                          🧌✨ @goblinbloggeruk ✨🧌

Today’s spoon count? Absolutely fuck all.

I woke up, blinked twice, and that used up three spoons I didn’t have. Got dressed? Minus five spoons. Made herbal tea? Minus ten spoons. Drank the herbal tea while contemplating the futility of existence? Surprisingly only minus two spoons.

By midday I was down to minus one hundred spoons, but hey, who’s counting? Me. I’m counting. Because if I don’t count them, my body will – usually with a dramatic collapse somewhere inconvenient, like Tesco’s freezer aisle, next to the frozen peas.

So here I am, writing this with negative spoons, like some overdraft I’ll never pay off, drifting through the day with my trademark goblin biker glare that says: “If you ask me to smile, I’ll eat your soul.”

But yeah, I’m fine, thanks for asking.

P.S. What’s a Spoonie?

A “spoonie” is someone living with a chronic illness or disability who uses the Spoon Theory to explain daily life. Spoons = units of energy. Every task uses spoons, and when you’re out, that’s it – game over for the day. It’s a way to explain invisible exhaustion to those blissfully unaware of it.

             “  The views in this post are based on my personal     
              experience. I do not intend harm, only honesty.”   

                “By ink and breath and sacred rage, I write.
                       By storm and silence, I survive.”

                           🧌✨ @goblinbloggeruk ✨🧌