Hello, this relapse i am in right now I think is the first big desiese progression i am experiencing. I have been in the hospital for just over a week with being given a high dose of steroids. I have not seen much of a bounce back to what I was before this set back. My last hiccup 7 or so years ago I seen a huge bounce back. How has people reacted to the point where they did not have a full bounce back. Like I know it still might be to early to tell but it is scaring me right now how my life will be if I do not have a big bounce back. I am just trying to find out how people here have reacted then they did not see a full bounce back to what they were before. It is scary the thought of actually not getting everything back. Any insight and advice would be much appreciated. Please feel free to add your input on your experiences please and thank you.
I had a 5 day course of IV steroids and the bounce back was incredible with a massive bout of roid rage following! It took a further 2 days of apologising to my family for being the bitch from hell.
I remained steadily getting my life back, then really going for it.
I have a major fault in remembering that it is a lifelong condition so going all guns blazing for a while is followed by a terrible decline.
A bit of a cliche but I’ll say it anyway - It is what it is!
hi cf
i has 11 relapses in lesss than 2 years. how is that info goingf to help ypu? dony get me wrtong, i fully understand why you are asking the question but whatver my or anybodysd answer is it makes no diff to your siyuation?
if you read other posts you willl see that i have been awol for a few months. why?! i have been comuinf to terms with further progresssion in my ms.
but in no way does thar mean i dont remember the fear and desaration that i sense frpom your post-which may never go. but it might. time will ytell.
carole mentioned cliches-there are many! i usae them as learning for myself!
it is what it is she mebtions-yep i get that one
i have ms-it dpesnr have me? my interpretatiom-aye physuicallly it bloody does! menytally-sometimes (i have had hallluninations as has jonny in coronation street!) my being/my spirit[-nah never!
we are all in the same boat. i prefer to think we are in the same water but indiviual one person canoes.
i think the most important ‘tool’ in living with ms is to be true to yourself (which is harder tham it sounda sometimes!) and never stop learning about life (not jiust ms)
el
My relapses have left some permanent damage from day 1, so I’m not really your woman for that question. Please do not assume just yet that you won’t make a full recovery this time, though. And even if you don’t quite, you might nearly.
Alison
I’ve been told by the medical staff that steroids stay in your system for up to three months, so don’t stress about things just yet… things might still improve slowly.
I’ve never taken steroids, but I’ve had 2 relapses that were terrifying. The worst was back in 2007. That’s when I had regular episodes where my legs would stop working entirely for a few minutes, the first time I needed a cane for every step I took, and I would fall asleep at the supper table with no warning. A friend developed the habit of coming to my house for morning coffee so he could guide me to work, because I’d be halfway there and forget where I was going. I’d had that job for quite a few years but had to follow my training notes every day because I couldn’t remember what I was supposed to do.
This went on for 6-9 months, and then I was back to normal albeit with a bit more daily exhaustion.
The 2nd bad spell was last year. It actually lasted closer to 18 months, from start to finish. and had me wondering every day if tomorrow was the day I became fully bedridden. Several months into the deterioration I began sleeping 20 hours a day because I just couldn’t stay awake for more than 15 minutes at a time. I had several weeks where I had great difficulty dressing myself. Random days where I couldn’t chew and swallow solid foods, hold a coffee cup, and needed notes explaining just how to use the stove and coffee maker. I needed a walker just to get through the house.
A few months later and I was able to walk unaided for short distances. I could cook 1 meal a week on the stove. I changed clothes several times a day just because I could. I celebrated when I could finally walk across my yard for the first time in a full year. It’s been a slow comeback this time around, but I’m nearly back to where I was in July 2019. Unfortunately, I can no longer leave the house without my cane and must lay down for a few hours most afternoons. I had to quit working and now live on government Disability.
On a good note, I’ve had MS for 40 years now, so my actual decline was very gradual. I’m still able to drive, just not every day and only for about 20 minutes at a time. I’m able to type again, still manage my own money, and live alone with no problem. This last relapse was the longest I’ve ever had, but the 2007 one was by far the worst, so it’s quite possible that you just need to give yourself more time to recover. It helped when I stopped focusing on individual days and began looking at how much progress I’d made over the last couple weeks or months.