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Posted: Sat Aug 09, 2008 10:02 am Post subject: First MS hospitalisation
It would appear that tuesday/wednesay's fatigue was building up to something bigger. On thursday things were feeling 'off', friday I took a half day at work so I had some relax time and by the evening both feet and my right leg were numb and weak, along with right arm weakness & increased difficulty walking.
Because it was both feet I was worried so I called the out of hours doctors - they admitted me to hospital for the night. They ran a bunch of tests - kept me up til 4am! They released me at lunch time with a load of methyl-prednisalone & crutches to help me walk.
Feeling kind of grotty from lack of sleep but like some progress has been made. Tho the doc admitted me for iv steroids they wouldn't do it once I got on the ward but gave me oral instead (less agressive apparently).
I felt pretty low for a while but I guess I only have myself to blame, working myself ragged at camp whilst suffering from a cold was not the smartest thing to do. I am getting scared at the rate of relapses - this is the second within 3 months, 3td big one within a year - I hadn't recovered from the last one! I guess I really do need to do less with my life!
When I first started out with MS, I was having a relapse every 3 months just like clock work. Then the relapses got further apart after a couple of years.
You have absolutely got to get rid of all of your "be nice to others" volunteer work so that you can continue to work and have time to take care of yourself.
I also agree! Getting someone to clean for you and lighten you load has now become a "need" rather than a "want". Do whatever you have to do to get someone to come into help. Your focus needs to be on your health-that is the most important.
Don't feel that because you've had a few relapses in a short space of time that it will be just getting worse from now on - not necessarily so. I was having 4 relapses a year a few years ago. Now I have about 1 a year and very mild at that. Long may that continue (she says frantically - Aug/Sept has always been my high-risk time of year! )
The thing is that it's a warning from your body to start consistently taking it easier from now on. I felt, for me, it was like a bereavement. I wanted to keep going out each weekend dancing, drinking, smoking, out til 4am, working full-time, doing classes in the evenings, swimming, cycling, tai-chi, etc etc. It took me so long to accept that I wasn't normal any more, and that I would end up in bits if I didn't cut down what I was doing.
Sometimes even now I feel jealous of my parents for example or older people in work - people who are 30 or 40 years older than me have better energy and stamina, but thems the breaks with MS.
PLEASE be good to yourself now and hire that cleaner, cut out the volunteer work, and take the time you need to get over this relapse.
Joined: Sep 12, 2006 Posts: 865 Location: Dayton, Ohio USA
Posted: Sun Aug 10, 2008 1:14 pm Post subject:
I would have philosophically disagreed with GWA until I started to only have enough energy to keep myself afloat. Perspective really changes then when the gas in your tank is just enough to make sure you don't piss your pants, fall and hurt yourself or anything else. An epiphany this weekend: I have become one of those that others need to help. Not an easy emotional transition or testosterologically conducive (new loobie word). That epiphany was not the normal type which usually result in some sort of improvement in your life. I guess finally letting others help and giving in to that will give me more energy. I was killing myself trying to do more than I was capable of and then paying the price. Camping was my hard one. I had to pull back even more where now I only pack my bag and only drive the trailer. My wife and daughter now carry everything. I get a chair and put in in front of the fridge' and put away the stuff from the coolers. Damn it's hard, but now I may have enough energy to enjoy the rest of the day.
I would overdo it and then sit around and get all upset because I couldn't do more. Then GWA's voice was in the back of my head and said "hey dummy, you can't do that shit anymore so quit banging your head against the ground and then feeling sorry for yourself because what you knew would happen, happenned". It's all part of the adaptation to the new you. I don't like it, but I also don't want to be a humorless asshole all the time anymore either. I'd rather be a funny asshole . _________________ "When you're in jail, a good friend will be trying to bail you out. A best friend will be in the cell next to you saying, 'Damn, that was fun.'"
I think you hit the nail on the head wonderfulworld. I am terrified to admit that I need help and that I can't do things anymore. I am used to filling my life so full of things, being the person who runs around after everyone else. I am really bad at handing over control and accepting help from other people.
Today was a family party, my sisters baby boys were christened (they were 4 weeks old on friday - I'll flood the pics thread when I get chance)! It broke my heart that I could not carry the babies anywhere - I could feed and cuddle and change them both (and did) but I couldn't carry them accross the room to the changing table - someone else had to do it for me. I also found it hard to be with my family - I really find the sympathy hard - and all the questinos - my aunt asked me if my legs would get better and I couldn't answer because I don't want to think about the future - I am just too scared to - cowardly I know.
I finally caved and started using crutches instead of a walking stick and it is so so so much better. But I still feel like an idiot. I haven't told my manager yet that I was in hospital over the weekend but i HAVE to be at work at monday.
I am going to step back and re-evaluate how much I do. I can't afford to hire a cleaner but I had a serious conversation with adam and he finally gets it. Since I was admitted to hospital he has been doing so much for me. If it continues like this we can do it!
Joined: Jul 13, 2008 Posts: 29 Location: California
Posted: Sun Aug 10, 2008 3:36 pm Post subject:
MrsGeorge,
Sorry to hear of your set back, having a flare up just sucks.
I came off of 12 weeks of short term disablity and started back to work at reduced hours this past monday. The past 12 weeks have really taught me to take care of myself and not do too much extra. Had a lot of time to reflect and decide what's important.
Then GWA's voice was in the back of my head and said "hey dummy, you can't do that shit anymore so quit banging your head against the ground and then feeling sorry for yourself because what you knew would happen, happenned". .
You must be a mind reader too. It is difficult to admit that you can't do everything that you have been used to doing.
We will all make it through as many others before us have done. This disease is a character building experience and constant adjustments must be made or a person will go nuts.
Posted: Thu Aug 14, 2008 6:26 pm Post subject: Cold/flu connection?
MrsGeorge, in your initial post here, you wrote:
Quote:
I felt pretty low for a while but I guess I only have myself to blame, working myself ragged at camp whilst suffering from a cold was not the smartest thing to do
Someone else here has observed that his exacerbations follow colds/flu. Could this be your pattern, too? Temporary worsening of symptoms is often mentioned in MS literature--frankly, I think mucus (and insulin) plays a role in this process.
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