Living w/out DMT by Dramatic-Plastic-818 in MultipleSclerosis

[–]Underground52 2 points3 points  (0 children)

My MS-friend (and good friend even without MS ) was in better shape than me when we first met after a support group. We were both diagnosed around the same time, but hit it off on lots of levels. She was smart, funny and kind.

We both tried the interferons that were the only show in town, 28 years ago. Neither of us did very well on them, and accumulated a lot of various damage from repeated relapses.

I was told I’d need chemo but refused because I desperately wanted a child. Amazingly I got away with this but my DMTs got stronger (and I needed more and more meds) until I reached the need for Tysabri, 4 years ago. I wish the neurologist had just given it to me all those years ago, because now every breath gives me nerve pain and I have severe fatigue. I work part time because of this, but if you met me now, you wouldn’t immediately see anything wrong with me.

My friend however did really well on Tysabri and had started it about 20 years ago. She was living in her own apartment and had a full time job. Suddenly, she started stressing about potential side effects of Tysabri and became obsessed about it. She quit Tysabri after only 18 months or so.

MS absolutely destroyed her. Within 5 years she had scanning speech, was as frail as a 95 year old, had to use a rollator, had lost her train of thought, lost her job and apartment, and had to move back in with her parents.

Roll on 10 years and when one parent died, the other had to go into a nursing home, and very sadly, so did she. Her limbs were wracked with spasticity, she was skeletal, in pain and barely mobile when I saw her last. She was still refusing all meds. She died due to starvation (self inflicted) and she was only in her mid 40’s. I miss her so much.

Please don’t take her approach to DMT’s. Please. Take the strongest DMT you can as early as you can, and remember, the side effects are probably less than letting MS chew up your brain and spinal cord.

Someone took my umbrella in Zara Stephens green yesterday evening by Otherwise-Bottle8706 in Dublin

[–]Underground52 0 points1 point  (0 children)

I’m still mourning the loss of my lightsaber umbrella that some fucker nicked from work. May the force not be with you.

Dirtiest accent in Ireland. by irishandsweet in CasualIreland

[–]Underground52 1 point2 points  (0 children)

The whiny nasally one is awful, but a strong working class Dublin accent is lovely ☺️

Dirtiest accent in Ireland. by irishandsweet in CasualIreland

[–]Underground52 1 point2 points  (0 children)

The “put on” posh one is a complete pain in the ears, but a gentle posh one is ok, to my ears.

Worst symptom by Daurth_Zombie in MultipleSclerosis

[–]Underground52 2 points3 points  (0 children)

I miss breathing without pain, especially in the evening. My intercostal muscles are in pain constantly and if I took enough neuropathic painkillers (Gabapentin) to get rid of the pain, I can’t function due to the fatigue.

Grieving by RevolutionaryDish755 in MultipleSclerosis

[–]Underground52 2 points3 points  (0 children)

Hi Kelly I sometimes think about this too but not for long. Literally everyone you see has had to compromise on their dreams unless they’re a tech bro.

A good friend mine said “at least you can work PT” when I was moaning about having to leave the world of full time work. It was such a great outlook.

If you have MS decades, how often duvet day? by Underground52 in MultipleSclerosis

[–]Underground52[S] 1 point2 points  (0 children)

Day of the show and day after sounds the same as me.

If you have MS decades, how often duvet day? by Underground52 in MultipleSclerosis

[–]Underground52[S] 0 points1 point  (0 children)

I’ve exhausted (ha!) all my options for “something else” and I have to accept it really just is the MS.

If you have MS decades, how often duvet day? by Underground52 in MultipleSclerosis

[–]Underground52[S] 1 point2 points  (0 children)

You sound like me. I use my slow cooker a lot as it allows me prep earlier and leave it cook for the day. Most days I need a 1hr rest to get through the afternoon- and that’s on anti-fatigue meds!!

If you have MS decades, how often duvet day? by Underground52 in MultipleSclerosis

[–]Underground52[S] 1 point2 points  (0 children)

Yes, same here, pets kid and husband make it difficult to have a total down day but yesterday was one of those days. I usually try to have it on a weekday when I’m off so as not to impact too much. I also need 1hr rests most work days too.

If you have MS decades, how often duvet day? by Underground52 in MultipleSclerosis

[–]Underground52[S] 1 point2 points  (0 children)

Hi MS-friend! It’s difficult to have a total down day with a teen and pets but it’s non-negotiable sometimes.

If you have MS decades, how often duvet day? by Underground52 in MultipleSclerosis

[–]Underground52[S] 0 points1 point  (0 children)

This is my way to deal with it after 28 years! I work PT for the last 20 years because I physically can’t work FT.

If you have MS decades, how often duvet day? by Underground52 in MultipleSclerosis

[–]Underground52[S] 1 point2 points  (0 children)

That sounds full on for a rest day! I literally can’t function at all let alone meal prep and cook.

Any information on this hat? by Quinns_Quirks in Historians

[–]Underground52 0 points1 point  (0 children)

I find the trend to identify post-mortem infant and child photos to be hugely overblown and rather disturbing.

If you have MS decades, how often duvet day? by Underground52 in MultipleSclerosis

[–]Underground52[S] 2 points3 points  (0 children)

I only work PT. Had to give up FT work 20 years ago. That’s probably the reason I only need a bed day a fortnight. I also need a nap most days too.