Limitless

[Screwdriver]

For historical reasons and because there are still a fair few real and virtual friends on here, I'm gonna tell you a story.

I have been diagnosed with multiple sclerosis. It is a very complex and wide ranging illness not sure if it's a bug, bacteria, virus, but there are "markers". It gets into you or it's part of your inherited genetic code, whatever, it eats you up. The markers were discovered (some time ago!) in the spinal tap/ lumbar puncture and the increasingly severe results are showing up on the MRIs. There is no longer any doubt. My particular variant could be in the a form of encephalitis, cerebro spinal vasculitis or just a type of "non presenting MS".

It has been a constant struggle with the NHS to get them to do anything, to make any progress and of course it's only me and I was hardly in the right state of mind to be able to drive this forwards. Imagine the worst case of Screwdriver "going off on one" but doing that in front of a recalcitrant neurologist who just wants to tick you off a list. I was my own worst enemy. It was a dilemma I was aware of but unable to control. Fuck knows how I got this far but finally, I got them to pull their fingers out and get on with some actual treatment.

Those were dark days. Decades of depression, mood swings, extreme fatigue (from doing nothing!), violent temperament, anger. The universe conspired against me. Everything was so unfair, I seek out the bad news to cheer myself up. Those dark days have been there during our time at Visordown, TRC and now here. This has been a long, slow decline. Frankly I am amazed that I made it through some of the darker days, especially since my enforced solitary confinement means my only human interactions are from this very chair, through the very screen you're looking at now.

Yes there is an actual person here. Hi. I'm Steve. Screwdriver is an alias and quite possibly, literally an alter ego with shades of clinically demonstrable schizophrenia. I am of course also DEADPOOL. Black humour during the deepest part of my recent depression and an attempt to stop people from digging up stuff from my Screwdriver past, wielded as a weapon to derail a lost argument. This was a dangerous time for me in my fragile state.

The disease becomes an inflammation when triggered. Fuck knows what those "triggers" are but physical or mental stress is certainly involved. The brain swells up, microscopically tiny blood vessels get squashed and cannot deliver oxygen, this causes futher inflammation in a vicious cycle, starving the brain tissue of oxygen which leads to permanent damage. For me (so far!) this has been "non presenting". You can't see it, there is so far as I can tell, no spasticity but there have been plenty of signs. The visual acuity is the biggie but countless "heart attacks" (lit random SVT, my physical heart muscle is in excellent shape), gastrointestinal agonies but everything down under is also tip top condition. Actually very good for my age...

How to fuck is there any good news then? And why am I telling you this if a decent troll could have me taking a short walk off a tall building?

Well. Have you seen the film "Limitless"? A wonder drug releases the hidden part of your brain giving you supercharged boosted powers of thought?

That just happened to me.

Exactly that. I am right at this moment, the Steve I was twenty years ago and I have reclaimed my own body. This Sunday I started a course of Methylprednisolone. It is a VICIOUSLY powerful (and super nasty tasting) drug and they gave me a massive dose of it too. All in one hit. It is the tactical nuke of brain management and my god did that stuff hit me sideways.

I SUDDENLY have enormous reserves of energy, both mental and physical. I can see my former ridiculous obsession with the dark side of human nature the media uses to feed from our delicate psyche and reach into your wallet. I don't think I am wrong in my views on these matters, nor do I feel I have presented my case poorly but my god why would anyone bang on about it so much! I think it is/was because I had no defence against those deeply psychological techniques the media uses to advertise, inform, cajole, generate heated debate, cash in on some clicks...

We digress. I can't apologise. I was ill.

Am I "cured" then? No. It is a chronic illness. There is no cure. Remission and relapse they call it (watch this space!!). I hope there isn't a downer to follow the end of this course of treatment. I took my last dose today so I won't find out if this is going to wear off. I fear the return of my alter ego despite the tremendous sense of calm, peace and love (Methylprednisolone is also psychotropic I discover); I don't want to hand my soul back to "that guy" so the next few days are going to be quite telling.

Wish me luck. I will be running around like a madman, getting all those jobs done around my various sheds while I still have this power. If anyone is passing by, drop in. All are welcome. Probably best sooner rather than later. We might be looking at a clock rather than a calendar...

[Trinity765]

I can't begin to understand and anything I say may be stupid in this situation. Good luck. I'm pleased that you have this window of relief and hope that you and your doctors can work out a plan that keeps you stable and in a good place.

I have, for the first time, got a Netflix subscription where Limitless is shown and will watch it this weekend.

[wheelnut]

Best of luck with the new treatment Screw’d - hope it helps give you a better quality of life.

Are you on interferon jabs? Isn’t one of the possible side effects depression?

[Noggin]

Totally awesome that the brain nuke has had such a good effect for now. Totally sux that you have this diagnosis and have been fighting so long for help

REALLY hoping for you that the drug lasts a long time, or resets the brain a bit so you don't fall back down the hole anytime soon

Good luck with the sheds and jobs

xxx

[weeksy]

am of course also DEADPOOL

I suppose as admin I should have checked IPs or something.

Glad to hear you've got at the least a temporary reprieve

Now go build that Aprilia.

[slowsider]

Good luck with it screwd.

[Jody]

good luck mate

glad you've had this platform to speak out

[wull]

Hopefully it lasts, good luck!

[Count Steer]

Welcome back Steve/Screwd. Hope the treatment 'sticks'. Pretty shocking that you had to battle like that to get through the hoops to get proper care, never mind getting on the drug trial. Epic results so far though.

[Horse]

Welcome back, in more than one way.

[Mussels]

Welcome back Screwdriver, I'm glad to hear something is working for you
There does seem to be a cure for MS, I don't know if it works for everyone and you'll need a cancer diagnosis to get it prescribed. As you know from helping us out before, my wife has had MS for years so I can certainly agree that mental stress can make it worse. Being in a zen state of mind helps a lot to keep MS at bay.
I've not heard about that drug so I'll have a read, a simpler drug that we found helps often is Propranolol to lower blood pressure. It's fairly mild so easy to get and have on hand.
What you have taken sounds similar to the effects of steroids, be careful if that also means you'll get a similar crash.

[Le_Fromage_Grande]

Welcome back Steve.

[Yambo]

Good to see you back here Screwd and good to see you're getting some treatment. I hope it all has long lasting and effective results.

Geçmiş olsun ve endişelenme, mutlu ol.

[DefTrap]

Illness is shitty, unfair and can be a lonely place to be.

Hope your state of remission is long lasting.

[Tricky]

Good to hear old boy, long may the reprieve (and your posting as either) continue

.......

Now go build that Aprilia.

Yep, that- but mainly that RG

[Screwdriver]

Best of luck with the new treatment Screw’d - hope it helps give you a better quality of life.

Are you on interferon jabs? Isn’t one of the possible side effects depression?

One of the reasons I post this here is a blog. A record I can refer to for my own purposes and a catharsis hat has nowhere else to go. It is a massive, indescribably different view I see now. I process things different visually, lights are literally brighter, I can read the expression in people faces. There are countless microscopic changes that you never realise were absent until their magnified effects come back and hit you all at once.

I feel like a small child staring at this new world with a sense of wonder. I can feel hunger! A giant inflatable ballon is growing inside me right now, telling me I need to eat. Normally I forget, start to shake and my legs go weak. I just thought that was normal until "loss of appetite" becomes less of an empty epithet and more of a clinical diagnosis. "Appetite" of course is a fundamental human response generated by your central nervous system and not just a clock telling you it's tea time.

I have not had a quality of life. This has been a living death.

What is worse is how clearly I can see the effect I have had on those around me. I am not an idiot, not by a long way. I have a moral code that insists on extreme loyalty which despite everything else, appears hardwired into my core. Even in my darkest days, I will step in to help whoever I can, whenever I can, however I am able.

I believe I do this perhaps from a sense of self worth because I am unable to "fit in" anywhere. I can't work for someone, I can't do what I am told. I have to do what I think is right. This served me well when I would obsess with technology where things I am good at "playing" with, technology, machinery, recreational physics were so useful to others, they would put up with "the other side".

No. There is no sign of any after care. The NHS is not a service in good order and I have no team batting on my side to play the game of help. There are thank god(!) a very small select few that have allowed me to keep going but I am under no illusion. If I am LUCKY, a consultant neurologist will get a ping six months from now to check up and see if I'm dead yet. Typically in my experience, this can be anything from 18 months to never. A very large number of the good ones simply move on, my case will be handed over to the next lucky camper, overwhelmed with an impossible list to tick off...

A wonderful example is a single letter I received from this long awaited telephone consultation. Since I write here, I wonder if anyone remembers Screwdriver from Pembury? I know Steve does (who is remarkably tolerant during our many PM's under various guises - actually I am sorry for that but DEADPOOL is so funny...) Anyhow, I have been waiting SINCE THEN, for this particular call to actually happen.

This single letter contained the confirmation of an appointment, the cancellation of this appointment and finally a confirmation letter for a new appointment AT THE SAME DATE AND TIME! It was September the 18th. A watershed moment in my so called life that dragged me back into the human realm. What a call that was.

Two days ago (this is as close to real time as I can get, I currently have the memory of a goldfish, hence the need to blog) I get another letter cancelling the consultation I just had. Go figure...

To dig down into your point @wheelnut it's lottery. I won't know what is going to happen until it does. I am beginning to think this treatment will stick and things will work out, the drug has done it's job, I am in remission.

I will find out tomorrow when I suddenly am no longer taking this wonder pill. Oh and by the way - it is blue.

[mangocrazy]

Steve/Screwdriver/DEADPOOL - I can't begin to imagine what you've been going through up till this point, but here's hoping that your current state of being continues indefinitely. It just goes to show that no-one really knows what is going on behind the facade we project and maintain. All the best.

[Screwdriver]

Nice to see you back typing, I can sort the wheat from the chaff and as far as I'm concerned you're one of the most switched on blokes I've ever met (and I've met a lot). Ignore the clowns, they're not on the same level so not much will make sense to them. For me, even when you're on the edge you make more sense than most.

I'm glad things are clearer for you, but don't go daft with it, slow down and don't put unrealistic expectations on yourself, in fact if anything maybe hold yourself back a bit and don't swing the pendulum too hard.

Here's hoping to spend many more afternoons with you in coffee shops talking philosophy

Wish I'd seen this first but I have been working from the top down. You are one of the good guys I really wanted to share this with.

I am trying to stay calm but I see the sheer volume of mess here in a new light and at this moment it is so easy for me to get things done, I can't stop! Make hay while the sun shines.

Also I did just get a call back from my GP to address my concern regarding come down. It would appear the "limitless" crash is not a feature or side effect, the drug has cleared out the infection, reduced the inflammation, oxygen is finally getting back into my brain.

Now the carbs are unblocked and whatever engine there is left in this old crate is being fully fuelled I won't need to stand so hard on the gas. To drag out the analogy, it's like stepping off a moped onto a FireBlade.

Here is a direct result of your observation: I've been working for some neighbours of course, theres a house full of (former) students and I have already bent their ears. I am having am bonfire tomorrow with a group of them. I know how that goes.

I'll get onto that now, make sure just a few turn up and I think I will have to insist on no drinks. And no fags either because I will smoke like a chimney after so many painful years of quitting....

It is so good to be back.

[ogri]

Best of luck, hope you stay in the calm spot indefinitely. Would be good to see pictures of you working your magic again.

[Skub]

Ah man,life has surely dealt you one. I'm glad for your current revival and sincerely wish this is your new normal. Dealing with bureaucracy in any form is an exercise in laying waste to the soul.When it concerns matters of health and quality of life,the frustration is magnified. The sense of urgency and desperation you feel is often not reflected by those who are paid to care. I'm not surprised you lost your cool,you did better than I could have.

Your example is a good reason for us all to adopt the 'be kind to everyone,you don't know what they are going through',perhaps more especially when posting online,when typically it's so much easier to be cruel and insulting to mere font.

Wishing you everything positive in the days ahead,Screwd,you deserve a break.