neurodivergent

⚠️ 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 disfuction this may be a confusing read non ai content

hello fellow humanoids Well after months and months of waiting I'm going to test my wheelchair out today yes a three hour round trip but it will be well worth it rusty one has to go in the garage on Wednesday for a new starter motor and a lot of welding to be done for the MOT this year it never ends pay pay lol it doesn't matter that you're on a pension and can't afford much haha but such as life I suppose the whole past load of days has been an absolute nightmare my autonomic dysfunction got set off on Friday and I have had the weekend from hell

It's dark outside and it's raining and it's very cold indeed my body is giving me hell I am trying to stretch my legs and arms to try and get them working properly just think no more hassles I'm going to have an actual proper power chair without any hassles of the three wheel trolley of death or the other trolley that went dead battery lol

The most important thing is I will be able to get new things done that I have not been able to i'll be able to go out be able to go and see stuff for a change instead of being stuck in the van it's been a long time since I've been anywhere must be two years now it seems that I've I still have to self-isolated myself even though I'm now retired what with all the colds and flu and all the lurgies and Bugs going around lol but to be fair I Self isolate every winter as I don't see any point in making myself worse than I already am

The autonomic dysfunction came into full Force over the weekend because I dared eat some ground sunflower seeds and of course that set off the histamine reaction and it was bad it really is quite nasty to be fair here's just a few of the things that happen when you go through this autonomic dysfunction stuff So yeah, it's been quite a mad few days. Indeed, the autonomic dysfunction is getting less, but I'm hoping today for very good news indeed.

I am slightly feeling weird and very weirded out as the doctor will be ringing me with the results of my ECG, the week long test that I had before Christmas. Yes, and I'm hoping that things work out on the phone as I have my views on Whats up with me, and I just hope that they can understand what I'm going through as I am going through something that no human should ever have to go through. It's the most horrible thing I've ever been through.

So today Rusty1 went to the garage, yes Rusty1 is having the starter motor fixed and the rest of the rust taken care of. So we'll be hearing later on today how that went. Yes indeed, I'm thinking very very big bill. When is it ever a small bill when a vehicle is concerned? That's what I have to ask myself. But then again it is essential to my well being as if we didn't have Rusty1 I wouldn't be going anywhere would I? Yes I would not as I am a virtual prisoner in my own home until I get my proper power chair.

Speaking of the power chair, yes on Monday, I did the three hour trip and I have tested the power chairs that they had there and I'm getting apparently a quick 300 and hopefully I should have that within a month or so. So that was really well worth the trip but I must say as soon as I got back I was so knackered it was unbelievable. I had to go straight to bed. The old brain fog was quite remarkably bad along with tinnitus and the pain in my eye it's like a hot needle going through my right eye is no fun. Still I'm glad I didn't have to drive. Thank you Albertine for that.

So I'm sat here now waiting for the doctor to phone. Yes, I've got white coat syndrome and I'm not looking forward to the phone call and my nerves are jangling like there is no tomorrow because well, I have that Feeling of Doom as usual, especially when it comes to the doctor. Yes, so this is a bit sort of all over the place, this one, and yeah, I hope that you don't have issues reading my stuff because it's all over the place because I never know where I am. That's why I used to stick it through the AI, but it used to sanitise it too much and I used to end up arguing with the AI and that's never good for my stress levels...

I am still seeing weird stuff as well and I have been trying to get professional help and I'm getting nowhere fast. These things I keep seeing. Yes, I have spoken to doctors, neurologists and all sorts of different people and I think I'm an eccentric nut. They seem to sort of say, 'Yes, yes, sort of pat me on the head' and I copted a look at one of my notes and it said, 'As long as it keeps him fucking happy.' 'I should bloody cocco, why would somebody say that?' A professional. 'They don't know me, they don't know who I am, they don't know what I am, yet I'm always fucking judged.' I hate being judged by people who don't know me, it's one of the biggest things. Because I'm in a power chair, I dress different, I look different, my attitude's different, I am a person inside, you know. These sort of people seem to forget some people do. And to me, I find that highly offensive.

now am I a pensioner, but I'm an eccentric pensioner with progressive multiple sclerosis, and severe Autonomic dysfunction, and yeah, I'm different. And I get treated like a moron. Oh, I know, let's talk to the chair. That's the wooden chair next to me, because we might get more sense out of it. Really? Honestly. It really does piss me off when people talk down to me. Or people think that I am stupid because I am in a wheelchair or because I am disabled. Do you know what? It really angers me when people ignore me and then speak straight to Albertine about me without asking me. I am sick of it. But when you say something you are then accused of being an angry or weird person. You just cannot win. It really is a minefield out there. So in the future I am just going to refuse to say anything and I am just going to Stick to the basic facts. Nothing else. That's it.

sending peace healing love and lite to everyone

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

Whether you’re newly diagnosed, living with MS for years, or just curious, you’ve likely heard some truly wild things about Multiple Sclerosis. So let’s bust some myths—because misinformation helps no one (and honestly, some of these are just rude).

1. “MS is a death sentence.” Let’s start with the big one. No, MS is not fatal in most cases. MS itself doesn’t kill people—complications can, but with today’s medications, treatments, and support systems, people with MS are living longer, healthier lives. You die with MS, not because of it.

Think of MS like an annoying roommate, not a serial killer.

2. “Only older people get MS.” This one’s bizarrely persistent. MS is most often diagnosed in people aged 20 to 40, though it can affect children (pediatric MS) and older adults too. But it’s definitely not an “old person’s disease.” Most of us are young(ish), trying to adult, work, date, raise kids, and live our lives—with the occasional brain fog or numb leg thrown in.

3. “Everyone with MS ends up in a wheelchair.” This is the fear-myth people love to whisper. Here’s the truth: most people with MS do not end up in a wheelchair. Some do, yes, especially if the disease is aggressive or untreated—but with modern meds, assistive devices, and PT, many remain mobile. And if you do use a chair? That doesn’t mean you’re “worse” or “losing.” It means you’re adapting, surviving, and still rolling forward (literally).

4. “MS is contagious.” Nope. You can’t catch it from someone, no matter how close you get. Hugs, kisses, shared drinks—zero risk. MS is an autoimmune disease, not an infection. So go ahead, be affectionate. Just don’t steal our snacks. That might be a problem.

5. “You don’t look sick, so you must be fine.” Cue the internal scream. MS comes with a host of invisible symptoms: fatigue, brain fog, pain, tingling, heat intolerance, vision issues. You might see someone laughing at brunch or walking the dog and assume they’re fine. What you don’t see is them lying in bed for hours afterward, trying to recover.

Looking good ≠ feeling good. Don’t judge the book by its mascara and yoga pants.

6. “MS always gets worse.” MS progression varies wildly. Some people have a relapsing-remitting course with long stretches of stability. Others have more progressive forms. But thanks to disease-modifying therapies (DMTs) and early diagnosis, many people live for decades with manageable symptoms.

Progression is not a guarantee—it’s a possibility, not a prophecy.

7. “It’s all in your head.” Well, kind of… but not in the way people mean. MS affects the central nervous system—the brain and spinal cord. So yeah, it is in your head (and spine). But that doesn’t mean it’s imaginary or psychological. It’s a real, physical disease with real physical consequences. Gaslighting people with chronic illness? That’s the real sickness.

8. “You’ll have to give up your career/life/fun.” MS might require some adjustments, but it does not mean giving up on your dreams. Many people with MS work full-time, raise kids, travel, compete in sports, write blogs (hey!), and live vibrant lives. You might need flexible hours or extra naps, but the fun doesn't stop—just evolves.

9. “MS is the same for everyone.” Biggest myth of all. MS is wildly unpredictable. One person may deal mostly with fatigue and vision issues, another may struggle with mobility or speech. Even the same person can experience different symptoms over time. That’s why it’s called “the snowflake disease”—no two cases are exactly alike.

10. “If you just eat right / do yoga / stay positive, you’ll be cured.” Look, lifestyle changes can help. Diet, movement, and mindset can make a big difference in managing MS. But there is no cure—yet. Telling someone they can “heal” with green juice and affirmations is dismissive and misleading. MS isn’t about “thinking yourself better.” It's about managing a complex condition the best you can.

Self-care is great. Snake oil? Not so much.

🛑 Final Thoughts: Living with MS means navigating not just the disease, but the narratives around it. Busting these myths doesn’t just help us advocate for ourselves—it helps the people around us understand, empathize, and stop saying ridiculous things at parties.

Got a myth you’ve heard that made your eye twitch? Drop me an email sick@mylivinghell.co.uk —maybe I’ll do a Part 2. “Life is funnier without the noise. Weirder too. But it’s mine now.”

       “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 ✨🧌