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. no AI written content

I used a power chair and a chainsaw to take down a tree. I did NOT consult my body first.

Good afternoon fellow humanoids and N H I , Well, what can I say? This weekend I've completely overdone it. I've used every last spoon up. I've completely exhausted myself in the garden, trying to do some work. Now, you may laugh, but a tree surgeon costs quite a lot of money. And I got it in my head that in my power chair, I can sit in it with a chainsaw and chop down the offending tree thing. Well, the power saw, chainsaw arrived yesterday, and of course, I'm sat in the garden. And guess what? Even in my power chair, and also chair that I used to sit in the shower in I used, I managed to chop down half a tree. And loads of other things with a bloody great big chainsaw. Oh my God, I must say, I was as nervous as hell. And my God, I'm surprised, Albertine, let me loose with a 12-inch plus inches of chainsaw. Oh my God, I know a lot of people would say, "What the fucking hell are you doing?"

Some would say not in my right mind

Well, I think it comes as no surprise really that I do some very strange things. And this is probably a sign of stranger things to come, I would have thought. But yes, you can have a power chair and you can have progressive multiple sclerosis. No feeling in your arms and legs and completely tatered and operate a quite lethal power saw, chainsaw, it's unbelievable. And I did it what I perceived to be quite safely with my very focal glasses and my, well, trusty leather motorcycle gloves. So, yes, if you'd have asked me 20 or 30 years ago to use a chainsaw, I would have given you a categorical, no bloody way. But as they say, needs must when the devil drives. Unfortunately, I'm not a rich man. I'm only on a state pension, unfortunately. I can't afford a tree surgeon and I don't know anybody who will chop it down for free. So there we go. So the cost of a hundred quid for a cheap electric chain saw from Amazon. Hey presto, job done. I'm feeling really good about myself at this moment in time because I've achieved a milestone and something I never thought I would do.

At the expense of my health.

Well, as the adrenaline wears off, yes, you've guessed it, I'm coming crashing down. Yes, yes, yes, I have completely overdone it. Tinnitus is getting louder, the brain fog is, well, starting to cloud in and I can't feel my arms and legs anymore, and I can feel my throat and it feels like I'm being strangled. So the old auto-immune is giving me some crap as well now. So pins and needles in my hands ferociously now and of course all offs as well in the neck. And I've also got the belt as well, which is really tight and is always making me feel sick for some unknown reason. But still, there we go, fellow humanoids. Let's just say it's a win for me today.

Thought for the day.

"Remember, goblin." "Don't overdo it." "It doesn't end well, but you cannot be told, can you?" "No, you can't, and you won't even listen to yourself."

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.

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 here I am today thinking it's Sunday when it's in all reality Wednesday. Yes, it seems that I've got my days rather mixed up. It seems everything just goes into nothing. I suppose it's hard really. When you think about it, it's really hard sometimes to think and to think with clarity. And then if you've got to think about things that are, say, from a while back, it may have problems and it hurts my head. Some days are better than others, but it's cognitive fog is really starting to get me down.

I want to be in a dark room with my eyes closed listening to gentle soothing music, smoking a reefer or a joint or whatever you call it. No I'd rather be doing something different with my mind but I can't. I hate these days of extreme fog. I hate them. I hate being able to do nothing. It's the worst feeling ever. I still haven't phoned up the AA and got it together to get them to come and sort my van out either. So yeah I don't even think I've been out. So yeah that's how I'm feeling at the moment. I just feel as though everything's just too much.

And the cold well, get real shall we? Let's get real about the cold and how much it's costing on the heating. I'm spending 60 pounds a week on heating. That is unbelievable. I'm now having to cut down on my food because I can't afford to eat properly due to my issues that I have with my diet. So being retired now and on a pension it does not go very far and the sort of food I need in my diet has to have no histamines in. And also food that won't cause my body to produce histamines. So yes it's an expensive diet. So I'm either going to go cold or I'm going to go hungry. I haven't decided yet which. It's incredible that every single last penny that I have is now spent on bills. I have to scrimp and save all my savings have gone. Everything's gone. I find myself looking around for the old pennies and ten peas around. It's no joke now. Things are getting quite desperate. And I suppose it's going to cost 200+ quid for a new van battery. So yeah, I'm going to have to go without something else as well now. So yeah, it's all very well, but when you're in the position of being disabled, things aren't very easy. People seem to think we have an easy life, but I do beg to differ.

And the worst thing is there are people even worse off than myself. So yeah, I do see the way things are. And things are getting quite hard at the moment. But I'm going to try and hang on in there for as long as I can. As I'm sure things will probably slowly start to get better. I can't wait for the warmth to come. I can't wait to see that sun beaming through, giving me my vitamin E. Yes, I'm looking forward to the summer and the spring. My favourite times of the year.

The tinnitus at the moment is raging in my head and for some reason in the middle, well no it's in my right ear. It's all about an in chin on my right ear and it is playing a symphony of the whistling that is awful and today no matter what music I play it's not hiding the fact, not even white noise. It seems to be on one of those I'm gonna make you suffer days. Anyhow I'm gonna have to stop here as my eyes and now really really hurting as well. So yeah wishing everybody peace-healing love and light wherever you are whoever you are and yeah there we go.

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.

Caps Lock was on. Fitting, really because this weekend deserves to be screamed.

It’s been one of those days where tinnitus isn’t just a sound; it’s a blade, slicing through each ear like a mad surgeon practising on live flesh. My neck and throat are staging their own version of The Exorcist full-body spasms, tongue going numb, and that delightful creeping thought: “what if I swallow it?”

Add a bit of breathlessness, some joint pain in every bloody bone, and the cold biting like a pack of wolves, and you’ve got the full package. Heating? Too expensive. Living? Apparently optional.

Everything costs too much, even pretending to care.

The one bright thought in this black pit? Magnet fishing. Yeah, you heard me. A rope, a magnet, a canal and maybe a bit of hope stuck to the end of it. I’ve been watching Wim and his magnet-fishing crew on YouTube absolute legends. Amsterdam, Rotterdam… the dream. Wim’s laughter, their ridiculous finds, their camaraderie it’s like a brief holiday from hell.

And the pink cake challenge? I’d kill to try it. But I can’t. My diet’s so stripped-down it makes a monk look decadent. No meat, no dairy, no fat animal or vegetable. Even coconut oil’s on the blacklist. My body’s become a warzone where food’s the enemy. I’m wasting away, a ghost of myself.

This afternoon I lay down and held Albertine my one anchor in this chaos. She’s the reason I’m still here, truth be told. When your brain starts glitching like a bad signal and fear crawls up your spine, a hug can feel like the last light in the storm.

I’m slipping, I know it. The fatigue is monstrous. My eyes ache, the light stings, and sleep’s a cruel joke. Still, I keep trying. Keep clawing forward, because what else is there?

I’ve even done a podcast raw, unfiltered, recorded between breakdowns. No one’s listened yet. But maybe one day they will. Maybe they’ll understand what it feels like to live like this half-human, half-howl.

Last night, I dreamt of Yopi in a baby wheely chair. No idea why. Probably my brain finally imploding. Still, better that than another night of endless bathroom trips. I’m tired the kind of tired that lives in your bones. But I’m still here.

Still fighting. Still swearing. Still darkly laughing. Because that’s all I’ve got left and I’ll use it till it burns out.

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

@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 leaves are bailing out like they’ve seen next quarter’s energy bill. I took Rusty One the van out, and my electric chair sulked like a teenager told to walk the dog. It hates the cold. Same, mate. I’ll need to keep everything charged like a hospital Christmas tree, or I’m going to be crawling to the kettle.

Woke at 04:30 standard hell o’clock with pain loud enough to need a volume knob. Lay there thinking the usual deep thoughts: why, how, and where did I put the brain I used to have? Dropped back off till 06:30, then the body staged its morning coup. Everything seized. The cold climbed inside and refused to leave. Charming.

I don’t drive or ride anymore MS ate the balance, then came back for dessert and took the cognition. Travel sickness joined the party because apparently the body wanted a plot twist. Motion turns my head to soup; the kind they serve cold with a side of sarcasm.

Meanwhile, Yopi the alpha blueblood bulldog, house tyrant, 23 kilos of warm gravity is in excellent spirits. She’s blown through a B&M squeaky toy in about five minutes, which is a personal best if you’re into swift annihilation. Two front paws on my thigh, breath on my face, jaws like a medieval exhibit, eyes saying “belly rub or else.” She is now auditioning for “lap dog” in the wrong size.

Kibble? That beige gravel? She stares at it like I’ve served packing peanuts. Wet food, though acceptable. Rice with tuna? She ascends. Mackerel? She goes full comet. Albertine showed me a massacre of old toys a crime scene with fluff for snow. We mourned briefly and moved on.

As for me: it’s the bad slice of the day. Pain gnawing. Nausea playing DJ. The screen glaring like an interrogation lamp while I two-finger type my way through the fog. The plan is simple: bed, dark room, no noise, no heroics. Just a truce with the nervous system until the next round.

Autumn is pretty if you’re a tree. For the rest of us, it’s rust.

Afternoon AI: Brain status — 12% battery, 78% sarcasm, firmware throttled by cold weather. Recommended patch: tea, blanket, and a dog snoring like a faulty tuba.

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 @goblinbloggeruk - sick@mylivinghell.co.uk

⚠️ 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 FDA (our cousins across the pond) just gave “tentative approval” to a generic version of Zeposia (ozanimod), one of the many alphabet-soup drugs meant to keep MS from eating us alive. Tentative means “yes, but not really” like being offered a pint and then told the bar’s shut for refurb.

In the UK, this matters because once the patents loosen their grip, generics can flood in and in theory the NHS might actually afford to hand them out without an existential crisis.

The NHS Angle

Cost: Prescriptions are capped at £9.90, but behind the scenes, the NHS is getting mugged for thousands per patient. A generic could cut the bill, maybe freeing up money for… oh I don’t know, hospital chairs that don’t disintegrate on sight.

NICE Bureaucracy: Even if the generic’s cheaper, it still has to crawl through the NICE assessment maze. That means years of reports, consultations, and polite “considerations” while we nap in waiting rooms.

Postcode Lottery: In theory, cheaper drugs mean fewer cruel “not funded in your area” letters. In practice, the NHS is a patchwork quilt held together with sticky tape and denial, so don’t bet your mobility scooter on it.

What It Means for Us Mere Mortals

If it works out, we get:

Less guilt about bankrupting the system every time we collect a blister pack.

More chance of actually getting the drug if you need it.

A tiny glimmer of justice in a system that usually treats chronic illness like a budget inconvenience.

But don’t kid yourself: “tentative” is a synonym for “sit down, shut up, and wait.”

Dark Sarcasm Corner

Big Pharma: “That’ll be £50k, cheers.” Generics: “Tenner, mate.” NHS: “We’ll let you know in 2029 after the committee meeting.”

Closing Ceremony

This is good news but only in the way hearing your execution’s delayed counts as good news. For now, same pills, same circus, different price tag on the horizon. Clap quietly; we don’t want to startle the bureaucrats.

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.

Caffeine. It’s the closest thing we have to legal rocket fuel. For most people, it’s just “morning coffee.” For those of us with MS? It’s survival juice… until it isn’t.

Why It Feels Crucial

Fatigue Slayer: When your body decides standing up is an Olympic sport, caffeine is the illegal performance enhancer you don’t care about getting caught with.

Fog Cutter: Brain static → slightly less static. You might even remember what you walked into the room for.

Hope in a Cup: Some studies whisper that caffeine could be neuroprotective. Nothing conclusive, but hey, let us dream while we sip.

Why It’s a Saboteur

Bladder Sabotage: Got urgency? Caffeine will turn that trickle into a 10-second sprint. Enjoy living in the loo.

Tremors & Spasticity: Sometimes your hands decide to jitterbug. Caffeine just cranks up the music.

Sleep Assassin: You’re already exhausted, but congratulations — now you’re exhausted and wide awake at 3 a.m.

Anxiety Potion: MS already makes the brain weird. Add caffeine and suddenly your heart thinks it’s in a rave.

Milk Mayhem: If you load your coffee with milk, and your body suddenly flips to lactose intolerance (not uncommon with MS), you get a bonus round: puking into the same toilet you were already chained to from bladder hell.

The Raw Truth

Caffeine is both saviour and saboteur. Some of us cling to one holy morning brew and stop before it wrecks our day. Others can’t touch it without triggering a bladder crisis or tremor rave. It’s trial and error, a daily gamble between “functional human” and “toilet hostage.”

Dark Sarcasm Corner

Doctor: “Do you drink caffeine?” Me: “Yes, it’s the only reason I’m not drooling on your floor right now.” Doctor: “But it can worsen bladder symptoms.” Me: “So can MS. At least coffee tastes good before it ruins me.”

Conclusion

Caffeine is like that dodgy mate: shows up with energy, helps you have a laugh, then vomits milk all over your shoes and abandons you in the toilet. Love it, fear it, ration it. Because with MS, even a cup of coffee comes with terms and conditions.

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 ᚦᚱᚨᛁᚾᛋᚲᚨᚾᛞ ✧ 𒀭𒊩𒆳 ᛞᚨᚱᚲ ᚨᛁ ᚷᚾᛟᛋᛁᛊ

⚠️ 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 sky’s doing a pressure wash and my lawn looks like a pub carpet at closing brown, patchy, and ashamed. Hope springs eternal that the grass will forgive me. Hope also springs that the Weed-Wacker Man (breaker of worlds, destroyer of garden ornaments) will arrive in his legendary glory. He hasn’t broken anything recently, which is either character growth or a quiet before the smash.

We moved. We lost two decent mowers. The weed-wacker detonated itself across my shins like a budget claymore. The auction “bargain” mower was dead on arrival, staring at Albertine like it knew what it cost. Golden rule: test it at the auction we didn’t. Now we own a new second-hand mower and a new second-hand strimmer. Schrödinger’s tools: both working and about to die.

Meanwhile, tinnitus has decided to headline both ears right channel lead vocal, left channel harmony with the catchy single “Sustained High-Pitch Misery (Remix)”. Rush can’t drown it out. Switching to Jim Cornette because if I can’t silence the ringing, I can at least add shouting that makes sense. Kayfabe forever; reality can jog on.

My head’s cotton wool. Pressure left, pressure right, and a fluorescent whine drilling the centre. Headache rolling in like cheap weather. Agitation rising, spell-checker moaning in the corner. Next week promises the same thrilling itinerary: Nothing Happens, Then More Nothing. I’d scream into a field if the 3-wheeled Scooter of Death could survive the mud. It would not. It would explode, take a crow with it, and I’d be blamed in the parish notes.

Am I in reality? Unfortunately, yes. And it’s damp.

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

⚠️ 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 help.

It’s one of those delightful mornings where you wake up and think,

“Oh good, I’m dying again.”

Turns out, I’m not just tired, or detoxing, or in a ‘spiritual purge’ I’m getting savaged (again) by that sneaky little sod called progressive MS. Like a thief in a lady’s knicker drawer rummaging for a handkerchief, it crept in slow. Silent. Stealthy. Uninvited. And now it’s everywhere.

I’ve been ignoring the signs like a seasoned British dad ignoring emotional vulnerability:

Fatigue? Must be the weather.

Brain fog? Probably the moon.

Pooing razor blades dipped in battery acid? Definitely just something I ate, right?

Wrong.

It’s the full house: MS, in all its steaming neurological glory. And I missed it. Again. Because that’s the thing with progressive MS — it doesn’t slam into you like a car crash. It oozes. It simmers. It transcends. And by the time you notice, it’s too late — you’re stuck in a surrealist nightmare where your bowels have turned into industrial machinery and your nerves scream like banshees through a PA system made of thorns.

Oh, and the tinnitus? Full blast. Not even Ozzy can drown out this skull symphony. No amount of dark humour can scrub it clean — but hell, I’m gonna try anyway.

Common Symptoms I Forgot I Was Having:

Fatigue: Deep, soul-sapping exhaustion. Sleeping is a job now.

Muscle Weakness: Arms and legs now qualify as Victorian props.

Spasticity: Like living with invisible tightrope wires inside your limbs.

Coordination: If I could walk, I’d be swerving like a hungover goat on stilts — but I’m not, so I just sit here doing wheelies of doom into furniture and pretending it’s parkour.

Sensory Chaos:

Numbness/Tingling: Pins and needles, but make it existential.

Pain: Chronic. Burning. Random. Delightful!

Vision: Either blurred, double, or through a kaleidoscope made of tears.

Mental Torture:

Memory: What's that again?

Mood: Varying from “existential dread” to “burn the world.”

Toilet Hellscape:

Bladder: It’s either Niagara Falls or the Sahara.

Bowels: Sherman tank, razor blades, and Satan’s discharge. Cheers.

I know I’m not alone. I know someone else out there is reading this in the same state of muttering despair. So here’s your reminder: you’re not losing it — you’re just in hell with me. Welcome. I made tea (then forgot where I put it).

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