LivingWithMS

🖤 “ coming Soon: A brutally honest ranking of the top ten alternative medicines.

What’s worth it, what’s useless, and what might just make life with chronic illness slightly less unbearable.”(Straight but brand-consistent) “Soon: A brutally honest ranking of the top ten alternative medicines. What’s worth it, what’s useless, and what might just make life with chronic illness slightly less unbearable.”(Straight but brand-consistent) “Soon: A brutally honest ranking of the top ten alternative medicines. What’s worth it, what’s useless, and what might just make life with chronic illness slightly less unbearable.”

So, you’ve got MS. Congrats on your new life sentence. Welcome to the club nobody wants to join, where your immune system treats your nerves like a chew toy and daily tasks become extreme sports. If you’re wondering how to cope with the relentless mental and physical torture that is Multiple Sclerosis, here’s your brutally honest, darkly comedic guide.

1. Eat Like You Actually Care (Even Though You Don’t) Sure, nutrition might help reduce fatigue, inflammation, and general bodily betrayal. Will quinoa and kale cure your MS? Absolutely not. But it’ll help you feel morally superior while your nervous system crumbles.

2. Exercise Without Dying Yes, exercise is important. But if you’re one squat away from sh*tting yourself or collapsing like a Victorian woman denied her fainting couch, maybe start with gentle stretching or a walk to the fridge. Small wins.

3. Train Your Brain (Before It Leaves You) MS can fog your mind faster than three bottles of wine. Crosswords, sudoku, brain training apps – all designed to slow the brain-melt. Bonus: if you forget to do them, that’s probably why you need them in the first place.

4. Sleep: Because Insomnia Isn’t Edgy MS fatigue is like dragging a corpse around all day. Insomnia makes it worse. Try regular sleep times, a dark cave-like room, and cooling your room so your inner demon feels at home.

5. Stress – Your Favourite Symptom Trigger Stress is the invisible gremlin that pokes your MS into full meltdown. Meditate, do yoga, or scream silently into your pillow. Whatever keeps you from becoming an actual murderer today.

6. Vitamin D & Smoking Low vitamin D makes MS worse. Smoking makes MS worse. The universe is basically telling you to quit cigs and take a supplement. Or keep smoking and accept your fate – dark choices only you can make.

7. Heat: Your Mortal Enemy Heat turns your already dysfunctional nerves into cooked spaghetti. Stay cool. Cold drinks, fans, icy glares at strangers – all recommended.

8. Depression & Anxiety: The Cherry on Top MS is a daily trauma loop, so depression and anxiety are loyal companions. Therapy, meds, and dark humour memes help. Talking to people might too, if you can be arsed.

9. Alternative Therapies Massage, acupuncture, cannabis oil – none will resurrect your dead nerves, but they might make the pain less unrelenting. Go wild. Or don’t. It’s your hell.

Final Pep Talk MS won’t kill your dark sense of humour, unless you let it. Implement these daily management tips and maybe – just maybe – tomorrow will suck slightly less.

       “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 ✨🧌

As I look back over the years of my spiritual awakening, I see a path shaped by intuition, nature, love, and deep inner truths. It hasn't always been easy—there were moments of doubt, unlearning, and rebirth—but through it all, a few guiding principles stayed with me. One of the most sacred? The Wiccan Rede.

When I first discovered the Rede, it felt like coming home. Its verses weren’t just poetic—they echoed the values I had begun to live by: harmony, accountability, connection to nature, and the power of intention.

The Rede opens with a call to integrity:

"Bide within the Law you must, in perfect Love and perfect Trust." These words taught me that spiritual power means nothing without compassion and respect—for myself, for others, and for the Earth.

I found comfort in the way it honors the Moon, the winds, the changing seasons, and the trees. The rhythm of the Rede helped me sync with the natural world, reminding me that we are never separate from it.

It also deepened my practice of magick—not just as ritual, but as conscious living. It taught me to:

Speak less, listen more

Work with nature, not against it

Celebrate the Wheel of the Year, honoring both light and shadow

Most importantly, the Rede carries the essence of Wiccan ethics in just eight words:

"An it harm none, do what ye will." This became a cornerstone in my spiritual evolution. It doesn't mean doing whatever I want—it means living with freedom and responsibility. Every choice, every spell, every word has energy. That awareness changed me.

Over the years, this Rede became more than a belief system—it became a living code. A gentle reminder that love, balance, and intention are what truly matter.

If you're on your own awakening journey, I share this not as a rulebook, but as inspiration. Let your path be yours. Listen to your soul. And above all, walk gently in the world.

🌿 The Wiccan Rede — A Modern Reflection

Here's a modernized and respectful version of The Wiccan Rede (Full Version) that keeps its spiritual essence but uses more accessible, contemporary language. It’s written to honor the original, while making it easier to connect with for modern readers, especially those on a spiritual awakening journey:

         The Wiccan Rede — A Modern Reflection

Live by the natural laws with love and trust in your heart. Live your life fully, and let others live theirs. Give and receive with fairness.

When casting your sacred circle, walk it three times to keep negative energy out. Speak your spells with clear intention—rhyming helps focus the energy.

Stay observant and gentle. Speak less, listen more. Respect the Ancient Ones in word and action; let love and light guide your path.

Move clockwise with the waxing moon, and celebrate with joyful chants. Move counterclockwise when the moon wanes, for reflection and release.

When the New Moon rises, honor the Goddess with reverence. At the Full Moon, focus on manifesting your heart’s desires.

When the North wind blows strong, stay grounded and protect your space. With the East wind comes fresh energy—embrace new beginnings.

The South wind brings passion and love. The West wind soothes and brings emotional peace.

Nine sacred woods feed the ritual fire—each with its own power: Birch for beginnings, Oak for strength, Rowan for protection. Willow brings connection to the afterlife. Hawthorn draws faerie energy. Hazel enhances wisdom. Apple brings love and fertility. Vine offers joy and celebration. Fir represents eternal life. But never burn Elder—it’s sacred to the Goddess.

Celebrate the year through the Wheel of the Sabbats: Samhain marks endings and new beginnings. Imbolc is a time of hope and early growth. Beltane celebrates life and passion. Lammas honors harvest and inner strength.

Mark the solstices and equinoxes too: Yule celebrates the return of light. Ostara brings balance and new life. Litha is when light peaks and power surges. Mabon is the time of reflection and giving thanks.

Learn from the earth—plants, flowers, and trees carry ancient wisdom. Speak truth, and stay true to your needs—don’t give in to greed.

Avoid foolishness and drama; keep your circle kind and wise. Greet others with warmth, and part with kindness.

Follow the Threefold Law—whatever you send out comes back three times over, for better or worse. If trouble comes, wear your symbol with pride and protection.

Be honest in love, unless love is dishonest with you.

And always remember the heart of the Rede:

"If it harms none, do as you will."

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

So here we are, diving headfirst into the weirdness that is my life — or what’s left of it after being slowly, methodically gnawed apart by progressive multiple sclerosis. Charming, right?

I knew things weren’t quite right from the start. I wasn’t imagining it, pretending, or trying to skip PE. I was nine years old with legs like jelly and nerves that fired like broken Christmas lights. I knew something was off. My body wasn’t working properly. It never has. And it’s been downhill ever since — no brakes, no map, no helpful roadside breakdown service.

Spoiler alert: I have MS. Progressive MS. The slow-burn, never-look-back, “enjoy the ride, it only gets worse” variety. And I’ve been fighting it for over 50 years — most of that in silence. Unheard. Unseen. Ignored. Dismissed. “Attention-seeking.” “Hysterical.” You know the drill.

Back then, there was no MRI magic or lumbar puncture fun day out. No one believed me. No one wanted to. The doctors — ah, bless them — thought I was putting it on. For the drama, I suppose. Because pretending to lose control of your limbs is all the rage when you're a kid trying to survive school.

Forty years. That’s how long it took them to finally notice. Forty. Can you even fathom that? I had all the textbook symptoms, but apparently, I was just making a lifestyle choice — you know, becoming progressively disabled for the vibes.

Eventually, they finally dragged me into hospital for all the fancy tests that proved, lo and behold: I wasn’t a liar, I wasn’t mad — I was just slowly falling apart from something called MS. Ta-dah. Gold star. Thanks for coming.

And honestly? It was a relief. Not the diagnosis — that sucked. But the proof. The closure. The validation. After decades of being told it was in my head, turns out it was in my spinal cord all along. Go figure.

But here’s the twist — I didn’t just survive that hell. Somewhere along the line, I changed. Call it spiritual, call it delusional, I don’t really care — I had what you might call a cosmic chat with the universe. Serapis Bey (look him up if you like mystics with style) paid me a visit, and something clicked. I shifted. I transformed. Something deep happened.

I’m not the person I used to be. Not even close. And people who knew me before can’t believe the person standing before them now. It’s like I underwent a total soul renovation with added glitter and spiritual scaffolding.

This world isn’t built for people like me — the weird, the ill, the eccentric, the inconvenient. If you’re different, you get ignored. Gaslit. Written off. But I’m still here. And I’ve got a voice, even if some days I barely have the strength to lift a cup of tea.

So here’s my truth: I’m strange. I’m spiritual. I’m sarcastic. I’m raging at the system but laughing through the pain. I have MS — but I’m still me.

To the others out there, like me — the unheard, the “difficult cases,” the ones who’ve been shoved into the corner because they didn’t tick the easy boxes: you’re not alone.

Don’t let this world break you. Let it sharpen you.

Rebuild. Reclaim. Be weird. Be you.

And if you’re ever in the dark, just remember — some of us are out here, lighting the way with rage, humour, and a whole lot of “f*** you” to the system that failed us.

🧠💥 40 Years Misdiagnosed. Still Here. Still Loud. They told me it was in my head. It was — just also in my spine, my nerves, and every inch of my being. This is the story of living with undiagnosed progressive MS for over 40 years. Ignored. Dismissed. Unheard. And yet — I never gave up. I changed. Spiritually, physically, mentally. I became something else. This one’s for the misfits, the chronically ill, the eccentric warriors who’ve been told to sit down and shut up. We’re not going anywhere.

🕊️ Who is Serapis Bey? Serapis Bey is known as an Ascended Master — a spiritual teacher who once walked the Earth and has since transcended to guide others on their soul’s evolution. Often associated with the energy of discipline, transformation, and spiritual rebirth, he’s considered the keeper of the White Ray of Ascension.

In short? He’s the no-nonsense cosmic coach who shows up when your life’s gone full chaos and it’s time to rise from the ashes — stronger, clearer, and more you than ever.

He helps guide those going through massive life shifts, especially when it feels like you're being spiritually remade from the inside out. Think: divine tough love with soul-level purpose.

sick@mylivinghell.co.uk

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

⤫ The Warlock’s Curse ⤫

In the still of the ache where the stars never shine, There sits the Warlock, warped out of time. Throne of rust, wheels cracked with regret, He murmurs to ghosts he hasn’t named yet.

His hands remember spells he’s long since forgotten, Fingers tingling with truths turned rotten. Once he conjured fire with a whisper and grin— Now the spark mocks him, trembling within.

A crown of wires, a robe of pain, Nerves like serpents—hissing through the brain. His staff is a drip, his runes are pills, He chants in silence on pharmacy hills.

Oh, the moons he danced beneath, drunk on starlight— Now watch him crawl through the blacker night. No sleep for the hexed, no peace for the damned, Just a bladder’s clock and death’s cold hand.

Chainsaw dreams, electric and wild, But even a Warlock is fate’s unwanted child. Albertine watches, her eyes full of years, She sees through the smoke, the jokes, the tears.

He laughs at the garden, the weed-wielding wraith, Remembers the ramp and short-circuited faith. Magic once sparked in the marrow of his spine— Now the lightning is cruel, and the power’s malign.

The gods are deaf. The stars are mute. The dark is deep, and the dark is acute. But still—he speaks, in verse and venom, His tongue numb, but truth within 'em.

For even in ruin, the Warlock remains, Wreathed in electric storms and phantom chains. He writes his spells in blood and pain, And dares the void to speak his name.

looking to buy a second hand q100 wheelcair or similar in the devon cornwall area as mine has gone completely to the breakers yard in the sky ... many thanks sick@mylivinghell.co.uk

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

So, picture this: I’m staring at my latest MRI, and what do I see? A delightful grey mush, like someone dumped a cumulus cloud into my skull and said, “There — best of luck.” Not a brain so much as a haunted fog machine on the fritz. The consultant just looked at me, that classic NHS stare — part clinical, part bewildered awe — and said, “I genuinely don’t know how you’re still functioning.” Cheers, doc. Real vote of confidence, that.

Let me tell you, the damage isn’t exactly localised. It’s like MS threw a party in my central nervous system and invited the entire cast of The Exorcist. Corpus callosum? Fracked. Spine? Swiss cheese. Bowels? Shall we say… unpredictable. Heart? Oh, now that’s the fun bit — apparently Warlock (that’s my MS, in case you’re new here) decided to throw in a few heart attacks just to keep things lively. Four so far. Three I stayed home for, because what’s the NHS going to do, offer me tea and a waiting list? The fourth landed me in hospital. Frankly, I wish I’d stayed in bed.

Not that the staff weren’t brilliant. They were — heroic, overstretched, masked-up angels during that delightful viral apocalypse we all lived through. But I came home… different. Breathing like Darth Vader in a heatwave, heart working at 60% capacity, kidneys sulking, and — oh, cherry on top — they found a tumour on my spine. Thankfully not the nasty sort, but still, another surprise guest in this body of horrors.

That was about seven years ago, I think. Time’s a blur when your memory’s patchy and reality feels like a badly written sitcom. I stopped going to the doctors after that. They didn’t get it. Didn’t get me. Kept staring at the clipboard like it might contain answers. It didn’t. The only thing worse than being ill is being misunderstood while ill — feeling like death, terrified, stressed out of your gourd, and being told, “There’s nothing more we can do.” You know what that does to a person?

Panic. Raw, soul-rattling, scream-into-the-pillow panic. Ever wanted to die just so the pain would stop? I have. Ever lived through that every day without a break? Welcome to the fracking carnival.

I’m already eccentric — now I’m full-on arcane. Friends? Gone. Either dead, or ran the second I said “diagnosis.” Couldn’t handle it. Couldn’t handle me. Pity, really. I had a lot to give. Still do. But when you’re this far off the map, people stop visiting.

I don’t trust anyone anymore. Life’s become one long stress fracture. I’ve got knowledge in my bones, wisdom hard-won from staring death down while sitting in a mobility scooter with a wonky wheel — and no one to pass it to. That’s the real tragedy. When your gifts have nowhere to go, no one to receive them.

This is part rant. Part confession. Part battle cry.

This is me.

Still here. Still kicking (even if my legs don't always agree). Still making jokes in the dark because it’s the only light I’ve got.

And Warlock? He can frack right off — I’m not done yet.

looking to buy a second hand q100 wheelcair or similar in the devon cornwall area as mine has gone completely to the breakers yard in the sky. sick@mylivinghell.co.uk

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

Congratulations, you’ve woken up! Time to play: What’s Broken Today?

Your goal: make it through the day without crying, swearing at your legs, or Googling “is this normal or am I dying?”

Choose your path below. Choose wisely. Or don’t. MS doesn’t care.

☀️ Morning – The Wake-Up Lottery You open your eyes. Sort of. Everything's a bit... off.

Do you: A) Feel rested and refreshed? [HAHAHAHA nope. Roll again.]

B) Feel like you’ve been mugged by exhaustion in your sleep? → Fatigue wins the round. Take 5 damage to motivation.

C) Can’t feel your left arm? → You’ve unlocked: Morning Numbness Mode. Hope you didn’t need to hold anything today.

🚿 The Shower Scene Hot water. The great equaliser. But today, your body has other plans.

Do you: A) Take a normal shower like a normal person? [Error 404: Normal not found.]

B) Overheat and nearly pass out while conditioning your hair? → Heat Sensitivity unlocked. You’re now a human candle. Stay cool (literally).

C) Drop the soap three times because your fingers forgot how to grip? → Coordination loss! Bonus: Slippery floor, surprise danger!

☕ Breakfast Choices Time to eat. Or attempt it. Your hand-to-mouth skills are on a random difficulty setting.

Do you: A) Make eggs without issue? [Dream big, champ.]

B) Forget what you were making mid-toast and stand staring at the kettle? → Cognitive Fog strikes again! You are now late and confused, but still hungry.

C) Burn your tongue because it took too long to realise your tea was hot? → Nerve damage for breakfast, anyone?

🧑‍💻 Midday Mayhem Time to work, or function, or pretend to. Let’s see what fresh chaos arrives.

Do you: A) Sit comfortably and type with ease? [Only in the fantasy genre.]

B) Experience sudden eye twitching, blurry vision and shooting pain down your spine? → Bingo! You’ve triggered Lhermitte’s Sign. Bonus: optical migraine starter pack!

C) Realise you’ve been sitting weird and now your legs are asleep? → Double numb legs – the sequel no one asked for.

🛋️ Afternoon Fun: Nap or Collapse? Fatigue is back. It brought friends.

Do you: A) Push through like a hero? → Well done, you now feel like a zombie that regrets everything.

B) Nap for 2 hours and wake up in a new dimension with no idea what year it is? → Temporal Confusion Mode Activated.

🌙 Evening – The Grand Finale The body is tired. The brain is soup. Dinner is optional.

Do you: A) Cook a meal? Narrator: They did not.

B) Order takeaway because your hands are too shaky to hold a knife? → Valid choice. +5 sanity. -£20 bank account.

C) Cry because your legs spasm during a TV ad for toothpaste? → MS Mood Swing. Roll for emotional stability. It’s a 1.

🏁 The End (Until Tomorrow) You’ve survived another round of “What Will MS Ruin Today?” Your reward: a weird new twitch in your eye, and the chance to play again tomorrow.

✨ Bonus Content: Cheat Codes for Coping Sarcasm: Unlimited ammo.

Snacks: +10 to morale.

Naps: Use liberally. Ignore haters.

Friends who get it: Legendary tier loot.

People who say “But you don’t look sick!”: Throw them into the sun.

looking to buy a second hand q100 wheelcair or similar in the devon cornwall area as mine has gone completely to the breakers yard in the sky. sick@mylivinghell.co.uk

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

So, you’ve been diagnosed with MS. And now… you get to explain it to your family — the ones who think “you look fine” means “you must be fine,” and probably believe turmeric and yoga can cure brain damage. Here’s how to break it down for them without getting arrested for arson.

🔥 Step 1: Accept They Know Absolutely Nothing You say, “Multiple Sclerosis.” They say, “Isn’t that like arthritis? Or depression? Or being a bit tired?” Correct response: “No, darling. MS is when your immune system plays Pac-Man with your brain and spine. I’m basically on fire internally while appearing vaguely functional.”

🎯 Step 2: Use Analogies for the Visually Confused Science talk = blank stares. Try this: “Imagine all the wires in your house are fraying. Lights flicker, the toaster runs the shower, and the WiFi’s possessed. That’s my nervous system. I’m the house.” Still confused? Great. You’re halfway to understanding MS.

🛌 Step 3: Explain Fatigue, Because No One Understands It No, it’s not “a bit tired.” It’s “I stood up, and now I need three hours to recover and possibly an exorcism.” Try: “Imagine having the flu, running a marathon, and then trying to solve algebra underwater. With a hangover. That’s what ‘fatigue’ feels like — on a good day.”

👀 Step 4: The Legendary “But You Look Fine!” Ah yes. The battle cry of the wilfully oblivious. Response options include: “So does a bomb before it explodes.” “Thanks! You look emotionally fine, and yet, here we are.” “I also look like I have patience. Clearly, appearances are misleading.”

🚽 Step 5: Embrace the Awkward Topics Bladder issues. Bowel misadventures. Numb bits. Electric shocks for no reason. If they get squeamish, lean in: “Yes, sometimes my body forgets how to wee properly. Or feels like it’s on fire. Or I walk like I’ve been tranquilised at a wedding. That’s MS. It doesn’t care about your comfort zone.”

📚 Step 6: Give Them the “Google It” Clause You are not WebMD in human form. You're tired. You're done. Say: “I’ll send you one good article or video. If you still think I should just ‘go gluten-free and do Pilates,’ I will pelt you with hummus.”

🤡 Step 7: Laugh, Because the Alternative Is Screaming MS is ridiculous. It’s surreal. And it doesn’t come with a guidebook. So own it: “I forget words mid-sentence. I fall over nothing. Sometimes my feet go on holiday without telling the rest of me. No, I’m not drunk. I’m just… uniquely wired now.”

🧠 Final Words of Wisdom You don’t owe anyone a perfect explanation. If they get it, great. If not — that's not your job to fix. Educate where you can, sass where required, and when in doubt: nap, snack, and protect your peace like it's the last chocolate biscuit on Earth. “What It’s Like Having MS: A Choose-Your-Own-Symptom Adventure” — because chronic illness should at least come with a plot twist

looking to buy a second hand q100 wheelcair or similar in the devon cornwall area as mine has gone completely to the breakers yard in the sky. sick@mylivinghell.co.uk

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

Today’s ride? Oh, only the finest in terrifying neurological tourism. Think: one-way ticket to Neuro-Nowhere on the fastest fracking ghost train the NHS never ordered. It started subtly, like all horror stories do — a bit of brain fog, just a hint. You know, that charming little mental haze where you try to remember why you walked into the kitchen and end up staring into the fridge wondering if milk is a concept. But then, WHAM — the fog rolls in thick, like some straight-to-DVD horror film, complete with dodgy scenery and a soundtrack composed entirely of your own tinnitus. My head? Once a finely tuned Ryzen processor — top-spec, liquid-cooled brilliance. Now? I’m a dusty old 486 with a cracked fan and a hard drive that sounds like it’s trying to speak in Morse code. Bad sectors? More like bad everything. And then came the glorious MS parade. Step right up for numbness in places you didn’t even know could feel numb. Whole left side: offline. Zero coordination. Like a wet sock full of jelly. That’s the hand I used to write with — now it flops around like it's trying to start a fight with gravity and losing. Muscle spasms? Oh, darling. I'm twitching like a freshly electrocuted squirrel. My legs feel like overcooked spaghetti, while my arms do an interpretive dance I didn’t choreograph. Meanwhile, pins and needles prance up and down my limbs like they’ve got somewhere better to be. Then there’s the tremors — the sort that make you question whether you’re anxious or auditioning to be a malfunctioning animatronic at a forgotten seaside theme park. Add in fatigue so heavy it could anchor the Titanic, and you’ve got yourself a full-house bingo card of chronic chaos. Let’s not forget vision problems. My eyes are doing a sexy little in-and-out-of-focus routine, because who needs depth perception when you can feel like you're watching your life through a bootleg VR headset taped to a microwave? Balance? Coordination? Gone. I'm walking like a baby giraffe on a treadmill greased with WD-40 and regret. Gravity has declared war on me. I’ve fallen over more times today than a British politician answering a straight question. Oh and the bladder — everyone's favourite. It’s like a confused toddler. Sometimes silent. Sometimes shouting. Never at the right moment. Cheers for that. Of course, I had the nausea, too — and when I say "had," I mean projectile vomited like Satan’s own party cannon. Took a nice 20-minute break to redecorate the bathroom in eau de horror, came back covered in the stuff, laughing like a drunk banshee at a funeral disco. Shaking, sweating, spasming, blind-ish, numb-ish, and emotionally somewhere between existential dread and dark comedy gold. If Kafka and Monty Python had a lovechild with a neurological disorder, I’d be the script. Am I worried? Nah. This is Britain. We don’t panic. We just make sarcastic blog posts while quietly falling apart, perhaps accompanied by a lukewarm cuppa and the creeping suspicion that our body's warranty expired three years ago. So here I am. Still riding the neurocoaster. Still laughing. Still shaking like a ferret on MDMA. If this is hell, at least it’s got character. Back soon. Or not. Depends if my right leg decides to go on strike next.

looking to buy a second hand q100 wheelcair or similar in the devon cornwall area sick@mylivinghell.co.uk

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

• “How to Irritate Your Consultant in Five Easy Steps”—a handy, satirical survival guide for the chronically ill rebel who refuses to behave like a docile NHS statistic: How to Irritate Your Consultant in Five Easy Steps Because illness is hard enough without surrendering your personality too.

Step 1: Arrive Informed—A.K.A. Their Worst Nightmare Before your appointment, read everything. Medical journals, dodgy Reddit forums, patient blogs, the back of your medication box—anything. Then casually drop phrases like “emerging evidence suggests” or “have you seen the latest NICE guidelines update?” Watch the colour drain from their face as they realise you might know what you’re talking about. Bonus points: Quote a study they haven’t read. Wait for the squirm.

Step 2: Refuse to Speak in Bullet Points They love a clean symptom list: “Fatigue. Numbness. Blah blah blah.” Instead, give them the full poetic experience: “It’s like my limbs are made of lukewarm jelly and my brain’s running Windows 95.” They’ll try to summarise it with “patient reports fatigue.” Interrupt with: “No, it’s existential fatigue. There’s a difference.”

Step 3: Make Jokes Oh, they hate this. You’re supposed to be weeping softly, not cracking one-liners. Try these: “So when do I evolve into my final Pokémon form: WobbleSaurus Rex?” “If I fall again, I’ll need a loyalty card for A&E.” “Does this come with a prize for ‘Least Functional Nervous System’?” They’ll either laugh nervously or refer you to psych. Either way, you win.

Step 4: Express Unfiltered Opinions Don't be afraid to question The System™. Say things like: “Do you actually read my notes or is that just for show?” “Gosh, it's wild how I had to chase eight departments for a scan I didn’t want in the first place.” “Do any of you talk to each other, or is this NHS-wide charades?” You’ll see them twitch, possibly make a note that says “difficult.” Wear that badge proudly.

Step 5: Be Consistently Human This is the final nail in the coffin. Cry a little. Laugh mid-sentence. Tell an unrelated story about a pigeon that made you feel seen. Say, “Some days I want to scream into a cushion, but I’d probably miss the cushion and dislocate something.” They won’t know what to do. They prefer data over depth. You’ve brought personhood into their spreadsheet. Unforgivable.

Bonus Round: Refuse to Be Fixed They’ll want a treatment plan, a “solution,” something they can tick off. Say, “I don’t want a cure today. I just want to be understood.” Boom. Consultant meltdown in three... two... one...

In Summary: Be curious. Be messy. Be sarcastic. Be loud in a system that prefers whispers. And never, ever, let them forget that you're not a diagnosis—you’re a whole, infuriating, brilliant human being.

looking to buy a second hand q100 wheelcair or similar in the devon cornwall area sick@mylivinghell.co.uk *

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

Well, it appears the universe has decided I need a front-row seat to the carnival of my own mind. Strange happenings, indeed. I’m left wondering whether I’m teetering on the edge of madness or just auditioning for the part of “eccentric hermit” in some cosmic sitcom. No, I’m not on any of those delightful MS meds, thank you very much. My body seems to view anything remotely pharmaceutical as a personal insult, so I let it run the show. The last time I had the pleasure of a “medication experiment,” it almost landed me an eight-day vacation in the hospital. And, as you can imagine, that wasn’t exactly on my bucket list. Anyway, back to the matter at hand—or perhaps I should say, misfiring nerves at hand. Am I seeing real things or just tripping on my own imagination? Who can say. My brain’s decided it’s time for a foggy intermission, complete with the usual “left-side-of-my-body hates me” encore. Lovely. The cherry on top? My tongue’s throwing a tantrum again with those oh-so-charming spasms, my gut nerves are having a rave, and the tinnitus is cranked up to eleven—like a personal heavy metal concert in my skull. So yes, everything’s perfectly normal around here.

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