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MS Myths Debunked: The Brutal Truth No One Tells You
Tired of MS myths? From "You don’t look sick" to "Have you tried turmeric?", here’s the raw, unfiltered truth about livi
Tired of MS myths? From "You don’t look sick" to "Have you tried turmeric?", here’s the raw, unfiltered truth about living with Multiple Sclerosis. No BS, just facts—and maybe a few dark laughs.
MS Starts Before You Even Know It
UCSF research reveals "MS Starts Years Before Symptoms: The Silent War Inside Your Brain" dropping now
" UCSF research reveals MS starts years before symptoms—because your brain’s already burning down while you’re still pretending everyth
A no-holds-barred account of life with Multiple Sclerosis pain, mobility struggles, and the battles no one talks about.
A no holds barred account of my stupid week from stress to rage to scooters of death and a lunatic salesman
A brutally honest blog about life with Multiple Sclerosis: pain, mobility scooters, UFOs, and surviving the NHS. Raw, real, and unfiltered.
A personal account of multiple sclerosis, autonomic dysfunction, and the reality of being unheard in modern healthcare.
, chronic-illness, invisible-illness, neurological-disorder, patient-experience, medical-gaslighting, nhs-experience, disability-awareness,
the invisible fire. (why your body feels like a short circuit).
"you look fine."
that is the hardest part. you look perfectly fine to everyone else. but inside, you wake up and your feet feel like they are walking on shattered glass. your hands tingle and go numb. your muscles randomly spasm, and the brain fog is so thick you can barely think.
you feel like your body's electrical system is glitching.
it is not in your head. it is a mechanical failure.
your nervous system is a vast network of electrical wires. every wire is supposed to be wrapped in a protective rubber coating called the 'myelin sheath' (your myelin armor).
but chronic, raging neuro-inflammation strips that coating away. without the armor, the raw, sensitive nerve wires are exposed. they touch each other and literally short-circuit. that electrical short-circuit is exactly what causes the burning pain, the 'pins and needles', and the numbness.
you cannot fix a frayed, short-circuiting wire by stretching. you must cool the fire.
the biological coolant: you cannot protect your remaining wires if your nervous system is constantly burning. by utilizing a targeted botanical protocol (acting as a biological nerve calmer), you can bypass the panic signals. specific extracts dial down the burning sensations, quiet the misfiring nerves, and provide a calmer, cooler biological environment so your body can rest.
i documented the exact protocol to cool the neuro-inflammation and quiet the misfiring signals here:
WATCH THE NERVE-CALMING MASTERCLASS
EXPLORE THE BOTANICAL COOLANT PROTOCOL
(stop stretching frayed wires. cool the fire. reclaim your comfort.)
One year ago today, I was diagnosed with Multiple Sclerosis. It's been a long year, a year of figuring out my "new normal", figuring out what I can and can't do, figuring out what it's like to take treatment for something knowing I'll be taking it for the rest of my life.
A year ago when I was told I had MS, I had a lot of emotions and I still do, but I've come to live beside those emotions, knowing it's completely normal to feel like my life is over, even if it's a disease that's not a death sentence but more of a life sentence. It was hard to hear the words 'there's no cure', because how do you process that news without immediately thinking you'll die from it sooner rather than later? In truth, there's some days when I still think like that, but there are others, especially after my injection days, where I know I can do this and I can get on with my life - even if it's a little slower than the rest of the world.
Did you know there are approximately 2.9 million people worldwide living with MS? It's an incredibly lonely disease, made even lonelier by the fact every single person with MS is living with it differently. Some are unable to walk unaided, or walk at all, some people have lost their ability to speak, some can't see. For me, I live every day with a numbness to my entire left side and weird nerve damage in my scalp and my back, I get sharp pain in my right eye, which was affected by optic neuritis when I relapsed. I live every day with headaches that never quite go away because of the scarring on my spine and brain.
In the past year, I've discovered the world is very cruel to people with invisible disabilities. But somehow, even crueller if you're young and disabled. When I was relapsing last year in May-June, I had almost lost the ability to walk entirely. I had to be aided by hand or with a walking stick which was still very difficult to do when my legs felt like they had cinder blocks attached to the bottom and I was wading through water - but I found that I would get judgemental stares from older people with my walking stick, and it made me not want to go out with it even when I needed it.
But there are people out there who take things at my pace, who accept the fact that I have a bit of a limp with my left leg and understand that walking can exhaust me quite quickly. People who understand my brain now process things more slowly, and I take more time to adjust to new environments. And those people are the only reason I've been able to keep going, because this disease is very hard to come to terms with and even harder to accept that this is it for the rest of my life.
So in the last year of living with diagnosed Multiple Sclerosis, I've found I'm still accepting my diagnosis and I will continue to have hard days where I don't want to carry on but I've also found people will still support me when I need it the most, and that I can try my best to make sure this disease doesn't get the best of me.
heyyyy besties guess who forgot it was multiple sclerosis awareness month lmao
unfortunately I am aware of my ms at all times but it's still relatively unfamiliar to the general public so I thought I'd share a mix of science and personal experience :)))
ms is an autoimmune disorder that effects the central nervous system (brain/spine). your immune system attacks the fatty part of a neuron (myelin), which protects the cell and helps electrical currents travel through the neuron. it's unclear why this happens, but in young people (me) it's thought to be from an overactive immune system that incorrectly sees the myelin as something foreign it needs to destroy. stress and heat are my main triggers.
pre mri, drs would dx by having someone take a long, super hot bath because it so consistently triggers flares. ms is currently dx by mri, spinal taps, or, rarely, taking a sample of brain tissue. I was supposed to get a spinal tap, but the first lesion was so clearly ms the doc thought it was unnecessary. ms is ideally treatment by a specialist who trained in neurology then specifically ms. there's not a lot of them so sometimes you have a regular neurologist. I'm really fortunate to live near a major research/teaching hospital that does have an ms center.
flares are treated medically with steroids, and stuff like physical therapy as needed. you take intense immune suppressants for the rest of your life. the stuff I'm on is also used to treat cancers, and it's considered moderately strong ie. if I flare on this there are stronger options, and I already flared on a weaker med
there are 4 main types of ms, which can range from a one off lesion (lesions are the damaged parts), or constant flares that stack on top of each other (ex. develop weakness in your left side, then blindness. the weakness is still present). you can be a one off (clinically isolated syndrome) for years before progressing to a more aggressive form. I had this dx for about a year before moving to relapsing-remitting (flares have a start and end).
There are three rare variants, one of which can lead to death if untreated. afaik this is the only path to ms being fatal. people have used doctor assisted suicide in severe cases
the severity of a flare depends on where the lesion is. I have one in my brain that caused complete numbness on the left side of my face for ~8 weeks (common length for an rrms flare). I have another on my spine that did nothing but looks massive on an mri. common symptoms include brain fog, chronic fatigue, loss of balance and coordination, mood swings, trembling. severe cases of ms can include incontinence, blindness, inability to walk or feed yourself due to muscle weakness.
strongly recommend cleveland clinic for a better rundown. the mayo clinic page kinda sucks imo and the nih is dense. if you go to web md ill die
Multiple sclerosis (MS) is an autoimmune condition. Learn about how MS affects your brain and spinal cord.
My family was able to get a second car through this scheme because my mum has MS.
My mum barely uses that car and didn't even want it because of how much discomfort her MS can cause her when she is driving.
But my dad works for the NHS and can't always take my little brother to school or immediately respond to family emergencies that require a car
Like most families living in the UK we actually do need two cars so my mum reluctantly decided to get the car.
She drives that car despite the pain because she loves her family and still wants to continue living as independently as she can before the MS takes it all away.
They say it's wrong that my mum gets a car for being disabled, but I say it's wrong that cunts like Anderson get freebies from donors and are paid to constantly spread lies about some of the most vulnerable people in our society.
If you're actually going to take away what little normality my mum still has by voting for Reform in the next GE all because you don't like foreign people coming here then you're just scum.
Reform is scum for what they plan to do.
Labour is scum for what they're trying to do.
Tories are scum for what they did.
Vote Green 💚
