MS support

⚠️ This blog shares my personal, sometimes painful experiences with MS and mental health. My intention is to speak honestly and offer solidarity—not to harm or replace professional advice. I’m not a doctor or therapist, just someone who gets how hard it can get. If you’re struggling, you’re not alone. Please reach out to a trusted friend, support group, or professional. You deserve help and hope.⚠️

please remember I suffer with severe cognitive dysfunction this may be a confusing read. AI help with content

A very good afternoon ,evening, or morning,to all who read this blog, I know its Thursday..my spellings getting insane so need more help..my eye sights getting worse.. oh joy this day brings lol...

MS Myths Debunked What People Get Wrong (And Why Google Isn't a Neurologist)

Let's play a game.

Take a shot every time someone says one of these classics:

"But you don't look sick."

"My cousin's neighbour's dog walker cured it with bonzo dog food."

"At least it's not cancer."

Actually... don't. Alcohol and MS fatigue are already in enough of a toxic relationship.

If you live with Multiple Sclerosis, you've probably heard enough unsolicited medical opinions to qualify for an honorary degree in Other People's Bollocks.

It's fascinating, really.

You spend years dealing with neurologists, MRIs, blood tests, medications and symptoms that make absolutely no sense...

...then some anonymous person from social media confidently informs you that all you really need is turmeric.

Remarkable.

Myth #1: "You Don't Look Sick."

Brilliant observation.

You also don't look like you have Wi-Fi, anxiety or a mortgage, yet somehow all three exist.

MS is often called an invisible illness because many symptoms can't be seen.

Fatigue. Pain. Brain fog. Balance problems. Numbness. Vision issues.

They're all real whether they come with flashing neon signs or not.

Just because someone smiled today doesn't mean they aren't paying for it tomorrow.

Human beings aren't mood rings.

Myth #2: "You're Too Young To Have MS."

MS doesn't politely wait until retirement.

Many people are diagnosed between the ages of 20 and 40.

Apparently autoimmune diseases never received the memo about age restrictions.

If they had, neurologists would have considerably less paperwork.

Myth #3: "Have You Tried..."

Yes.

I've tried medication.

Physiotherapy.

Exercise.

Rest.

Diet changes.

Supplements.

Yoga.

Stretching.

Hope.

Denial.

Swearing creatively.

I've even tried pretending everything's fine.

Spoiler:

That one lasted until Tuesday.

The internet has convinced an alarming number of people that watching three YouTube videos somehow outranks years of neurological research.

Congratulations.

You've mistaken confidence for competence.

Myth #4: "It's All In Your Head."

Technically...

Yes.

That's literally where the lesions are.

Congratulations on accidentally stumbling into medical accuracy.

Unfortunately, that's where your expertise ends.

MS is a disease where the immune system attacks the protective covering around nerves, disrupting communication between the brain and the rest of the body.

It's neurological.

Not imaginary.

There's a rather significant difference.

Myth #5: "My Friend Has MS And They're Fine."

Excellent.

My mate owns a Labrador.

That doesn't mean every dog behaves the same.

MS is famously unpredictable.

No two people experience it the same way.

Some have relapsing symptoms.

Others experience gradual progression.

Some use mobility aids.

Some don't.

Some work full-time.

Some can't.

Comparing one person with MS to another is about as scientific as comparing apples to traffic cones.

Myth #6: "You're Just Tired."

No.

You're tired.

I'm experiencing fatigue.

There's a difference.

Being tired is needing another coffee.

MS fatigue is feeling like someone unplugged your batteries, replaced your bones with wet cement and then expected you to function like nothing happened.

It's not laziness.

It's not lack of motivation.

It's one of the most disabling symptoms many people with MS experience.

Myth #7: "There's Probably A Cure They're Hiding."

Ah yes.

The secret underground vault where scientists keep cures next to Bigfoot, Atlantis and common sense on social media.

Medical research is improving all the time.

Treatments have advanced enormously.

Many people now live fuller, longer lives because of disease-modifying therapies.

But there isn't a miracle cure hidden behind a curtain while neurologists twirl moustaches and laugh maniacally.

Real science isn't a Netflix conspiracy documentary.

It's slower.

Messier.

And considerably less exciting.

The Real Problem

The biggest disability many people with MS face isn't always the disease.

Sometimes it's ignorance dressed up as kindness.

People mean well.

Mostly.

But good intentions don't magically become useful information.

Sometimes the most helpful thing you can say is astonishingly simple.

"I'm sorry you're dealing with that."

"How are you today?"

"Can I help?"

No miracle diets.

No Facebook research.

No comparing them to your aunt's hairdresser.

Just empathy.

It's free.

Unlike most prescriptions.

Final Thought

Living with MS already means adapting to uncertainty.

Nobody needs the added bonus of becoming an unpaid myth-buster every time they leave the house.

So before offering advice nobody requested...

Before assuming someone is "fine" because they're smiling...

Before announcing you've discovered the cure via an influencer selling herbal powder...

Pause.

Remember that the person living with MS probably knows more about it than the bloke commenting underneath a cat video.

Empathy will always age better than ignorance.

And unlike internet experts...

It doesn't require Wi-Fi.

wishing all the readers of my blog peace healing love and light no matter who you are ....

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.)

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. non AI content

Hello fellow Humanoids So, it is a dark Tuesday evening and yes, the confusion continues with trying to get me to see a nuro dude It seems that the communications have gone awry and then some. But then again what did I expect where I am concerned? Apparently I have not been transferred to the new hospital and I am with the old hospital.

So I only found that out a couple of days ago. So now I am having to deal with the old hospital. So yes you can imagine how confusing everything has totally got with absolutely everything. So we have my doctor here dealing with one hospital and yes of course it's the wrong one.

So no wonder I've been stuck somewhere since November in this weird system of things. So I have been desperately in need of seeing a neurologist since the ambulance men came out in November. And that plainly hasn't happened even when I have been begging. I have been begging and asking to see a neuro and nothing happened because of the confusion of me asking to move to a new hospital with a stronger neuro team. So, I don't blame my local doctors, I just blame the bureaucratic nightmare that is the NHS with one hospital not speaking to another hospital because their communications don't connect or some weirdness like that. Ah well, never mind.

So, yes, my cognitive fog or brain fog is lessening at the moment, and my autonomic dysfunction is calming down slightly due to my strict dietary control. I also found out something really annoying today that the only clinic in the UK that deals with autonomic dysfunction is private and that I would have to pay. So yeah, that means I'm gonna have to suffer. Oh the fucking joys of it eh? You could not make this stuff up.

The trapped nerve or impacted nerve in my neck shoulder is starting to cause me less grief and I am managing to now sleep. Well, that until is the kitten start screeching because yes, they've come into season again. Oh, the joys. Albertine and I are awaiting the vet's phone call so we can take both the kittens in and have them spayed or seen to whatever they do to female kittens these days. We were having a right laugh remembering when we have had cats and dogs spaded or neutered before and they've had to wear those funny like space helmets. And they're going to look really stupid walking around with their little space helmets on wobbling around the room. And I'm going to video it and I'm going to put it up so everybody can have a right laugh. Also, of course, we're going to go and get them microchip at the same time.

So yes, I have been dealing with the medical people on their own terms as I have been using AI. And AI has had me really clued up on everything and what can and cannot be done. It's amazing how AI has helped me to come to certain conclusions and it really has helped me. So the one thing I do find helpful about AI is the medical side. It really does help, and I'm 110% down with that I can tell you because it's certainly helped me.

So yeah, I may bang on about AI sanitizing everything that I personally say changes my swearing changes what I say, what I mean, etc. To be more understanding for people. I don't like that. I prefer my own raw brain fog. I've got MS and this is how it looks people,, Because you're going to have to deal with it. Yes, I can change conversation. Mid conversation. I can change the subject of the conversation like it's going out of fashion. Sometimes trying to have a conversation with me about one subject. I can be going from one subject to another subject to another subject. And then there's my memory. Oh my God trying to have a conversation with me sometimes is like trying to have a conversation. with a drunk duck.

I suppose the thing that makes me laugh more than anything is when you get the people who see you in your power chair wheelchair and their sort of people that like to pat you on the head and go there there. And then they don't realize what they've unleashed they've unleashed Mr dark who is this. Completely no holds barred. eccentric, Tin foil hat wearing psycho with Progressive ms and autonomic dysfunctionated person who will let you have it both barrels and don't give a shit about it either. Because I have had that happen to me and I find it quite funny when people stare at me and look at me as though I am from another planet. I find it really funny. When you have lived on the outside of society like I have done for the past 40-50 years, you will understand Looking in can be a very funny and worthwhile experience. That's for sure.

So I get the odd one or two people who actually read my blog posts. I'm very surprised indeed but thank you for reading and sometimes I just wonder if what I'm saying makes any sense to anybody seriously. I have joined many MS forums over the years and many places where people with MS go to talk but they seem to just vanish !!and disappear like most of the MS groups in the UK. One minute there there, the next minute there gone.

So, if there's anybody who reads this blog that has any email addresses of MS groups anywhere in the UK or anywhere in the world for that matter, that I can publicly advertise on a separate ongoing blog post.., so if there's an MS group say in Brattaslava, that's just a name out of the air that wants to say, "Yep, there's an MS group there." Well, I'll stick it on up so people know about it. So people can go there, people can meet the people and people can see people because the most important thing, if you have MS, you should be talking to other people with MS. Yeah? Because the more people that get together and chat, the easier it is to deal with the affliction, the illness, the sickness, the madness that we have. Seriously, talking really does help.

Trust me indeed when I say to you, I know many, many people with many chronic illnesses. Many of my friends have passed recently, unfortunately. And what I say is, if you're out there and you want to have a bloody good rant, and you have no one to rant to, you can always rant to me. I don't really care. You can send me an email, ranting. You need to rant. I'm always here for people who've got MS who need help. Remember that, folks, because people with MS understand people with MS. Yeah? People who are starting out on the MS trail, and I know that sounds a horrible thing to say, they need to know the truth of how it can progress. Seriously, I'm prepared to tell the truth, the raw truth, that a lot of people won't talk about, you know?

So, if you have any serious questions that you would like answered privately, I will answer privately. But if you have any questions that you would like to be shared publicly on my blog and answered on my blog, just get in touch with me, drop me a line. All emails and everything will be treated in the strictest of confidence. Why should you suffer in silence? I know I suffered in silence for many years. Sometimes knowing the truth is being better than being gaslit. !!!!

As ever, sending anyone and everyone who reads these words, peace, healing, love and light, no matter whom or whatever you are, or wherever you're from.

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