|
This is not gonna be a fun one with picturee, sorry.
So here I am lying in hospital, after an MRI scan and spinal tap, waiting for final results and receiving preliminary treatment with the main goal of making a record for the insurance company so that i will be eligible for the actual medicine later. I made the mistake of reading english materials about treatment online only to find out how that may not apply to me due to being born in a forgotten backwater.
My life is essentially gone in the blink of an eye. It will be dpoctors and needles from now on, my love for freedom will disappear under schedules and planning. Eventually, I will stop walking and slowly die.
Sure, its still not final but everyone acts as if it were, so my hopes arent very high. Some confused vision problems, some tingling in fingers and suddenly I went from "here is to another great 35 years" to "maybe i will have something good in life once in a while."
Go outside and live while you can. If not for you, do it for me.
|
Don't really know what to say man...
I feel sorry for you, truly sorry. Is there any possible way of recovering from sclerosis ? Hopefully you'll get better, at least so that you can wander again freely a little more.
Keep fighting man, keep your spirit strong, that's the only thing that count.
GL man
|
there is no cure. some 15 people afaik have recovered using a borderline insane treatment, but one guy died in that study.as a direct result of the insanity of the method. other than that it is basically just hoping for the best.
|
I will do it for both of us.
There is nothing I can say or do that can help you. Stay strong, for as long as you can.
|
...
And here I was thinking (again) about how messed up my life is. And all I've got is depression and being antisocial. I've had much more going for me in life than most people, but I've never known what I've wanted... and never really felt happy...but this is not about me.
I have enjoyed your blogs, I really have. "Not everything wants to kill you in Australia" was the first one I read, and after that I read a few of the older entries. I like to read blogs on TL, lots of unexpected and interesting entries.
And I might as well try to give my own life another try... I've felt like not living for way too long. Today it is time to finish some work that I have been delaying for way too long.
I was trying to numb myself with beer tonight, I came on TL and read this... and it hit me like a hammer.
Stay strong!
|
:/
Life is what it is ...
i just saw/read you posting in the custom forum and i knew something was up .. or at least .. my brain missed a beat or something .. and now that i read your "news" i'm sad...
Now i am faced with a choice, to cuddle you or not :/
There are people who live with ms and manage to do stuff with the help of other people for years/decade, your life is not over.. but yes it will have to be on the illness' terms and a lot will be awful and like an addict trying to reclaim his life you will go through "steps" all hard and all seemingly more and more unfair for all this time.
But that does not mean it won't be worth it.. every day we have is a gift and you have to hold on tight. ms is one of the most researched illness in the world and like aids that was once incurable for everyone .. medicine has now "saved" many, so don't lose hope on that front!
Maybe you will still climb your mount everest .. just .. that might not be a mount at all.. it will be to still work, to still walk and talk and live .. and ultimately surviving this <3
+ Show Spoiler [cuddleless] +You sort of know me  i don't cuddle needlessly, in this case there is an extra reason for it :/ so here i go: the most insidious part of degenerative illnesses is that people will start to pity you.. (knowing you a little bit in return) i think you will particularly hate that.. to never again be "normal".. to never again be anything else than a sick guy .. fight this (do not shun people away) fight this from within and from without (go full sayan meditation and budda,(or whatever) it will make a huge difference) and win.. don't reject people showing you that pity, don't accept it either, just accept the illness and make yourself another life where that is something you have to deal with smartly .. if you feel this life you had is over you won't manage.
Now is the time for you to discover the world within you 
as SkrollK said .. your spirit will make the difference.. i trust you to make the most of all you have
and do cast my vote for : + Show Spoiler +
i'd add .. love is life
but you are possibly not there yet.. soon though, i trust you!
+ Show Spoiler [cuddly] +if/when you get off the rails crazy, think of what i would tell you and hit me on skype, i'll show you the way back, promise!
|
guys, thanks for you words.
fluidrone, you are the wisest weird person i have ever talked to. i think some of your post look like random noise to me just because they were never realky meant for me - because this one is for me and it speaks very clearly.
|
I cannot say anything personal, and I don't have words of wisdom or good advice, but I want to write here anyway to send you all my warmest feelings and and strong strong hug - I am mostly a lurker on TL but I read many of your posts and always enjoyed them. This post is just to try to send you a bit of support, even if online, through a forum, and from someone you don't know - all my love to you.
|
I read this and it felt so unreal, so unfair to me. First i didn't want to post anything because i was and still am scared to choose the wrong words. But that would be the easy way and you deserve better than that. I don't know you very well, we only ever interacted on TL, mostly talking about silly things like starcraft. Still, i appreciated our interactions quite a lot no matter how unimportant they actually were. I am sure there are countless other guys who feel the same way here on TL alone.
I don't have any experience with illnesses like that so i won't pretend to know but i really hope you can find strength and happiness somehow even though it probably looks very bleak now. There is always a reason to keep on trying, keep on living.
Wish you the very best
|
I haven't really been living for the past 5 years, this more than anything definitely helps me realize I should do something about that. Stay strong, stranger. Who knows the wonders of science might sneak up on you out of the blue. <3
|
thanks for your support. special love to viper of course, you are a great part of this place
|
Dude, you're not going anywhere. Don't forget your responsibilities as a shitposter.
I've spent a good part of last 6 years in TL browsing and sometimes even posting. There can be only one Opisska.
All the best
|
Damn, I should really go climb that hill tomorrow. I say hill, but it's actually marked as a "knob" on the map.
I'd usually say get well soon, but yeah, get worse later I suppose.
|
Shit. I remember you from that post about your cool Astrophysics work. I also saw you visit a teamliquid member in Australia (?) and had a good time. For the rest, I saw your name pop up every where. Even if I don't know you in real life, I hope for the best.
Maybe you'll have some luck? MS is rarely fatal and not always physically debilitating. You could still live for another 40 years without ever needing crutches or a wheel chair.
Good luck...
|
Welp, not the best news indeed. I didn't see your blog until now, now I get what you meant by the hole in your spine... MS can go from bad to worse, and you sound like the second half :/
I sincerely wish you all the best in any case.
If you have the opportunity, let us taste the lemonade you'll made with all this!
Take it as you will, but I'd be happy to be able to do something. As an almost complete stranger, maybe I could help you in way closer people can't, be it for things as simple as uninterested chit-chat or whatever.
Keep up the good fight.
|
I got an appointment in a specialized MS center in two weeks. my neurologist has the doctor in very high regard and talked me through some things, so i am a little bit more optimistic. But its gonna be hard anyway. Ill keep you posted, the ability to type should last quite long
|
My grandmother had a disease which was a lot like MS. Basically she had no feeling at the end of her nerves. Once in a while she'd get these surveys to ask what she would think of her life (since a lot of elderly are depressed). SHe still rated her life with a 7 (on a scale of 1-10) even though she was also suffering of COPD and lung cancer. What I'm trying to say is that even though what you're going through is terrible it's still possible to enjoy your life.
Good luck friend and all the best.
|
United States996 Posts
sister-in-law has ms. shes stayed largely healthy since her diagnosis a decade back and still lives a normal life. keep your friends and family close. best of luck.
|
Very sorry to hear that 
Wife has a lupus so I know how painful life can be with these fucking autoimmune diseases.
A very healthy diet and sleep patterns as well as medical marijuana have been very helpful.
Good luck and stay strong!
|
Seeker
Where dat snitch at?37041 Posts
Sorry to hear that. Wishing all the best for you. TL will always be here to support you. Stay strong!
|
|
|
|
|
|
EPT
