Hi. Im just wondering how many tysabri (or other DMD’s) users still work & how it affects them at work (if at all)? My partner isn’t keen on me returning to work yet as she feels any improvement I’ve made is due to resting & being stress free. But I am just so bored at home. I feel that whilst my physical condition is improving I want to live a regular life & see the world. But I am mindful that if I have a major relapse again I would become a massive burden on my partner.
i worked as a secondary school teacher so though it can be stressful i only worked 4 days. I did get plenty of holidays. I’m just curious how others found their return to work & whether there is a link between having a lie in & relapse rate?
i am on tysabri. however too much damage already done prior to starting it so cant answer your question re that however this is your life-live it as fully as u can daily!
ur next relapse may be tomorrow 10 yrs from now-deal with when it happens. worrying and trying to guess when it will be is pointless!
links, patterns, research may be useful (?!) but u are unique just like everyone else!
Like chocorange, I started Tysabri a bit late in the day. But part of the promise for that generation of really effective DMDs is exactly that it allows people who start on them soon enough to live their lives with FAR fewer restrictions.
Beware of being backed into a cotton-wool-lined corner, and trapped there. There are more ways for a person to have his life impoverished and his horizons narrowed than simple MS damage.
Of course the people who love us most are the ones who most want to protect us and make it all right for us. Lucky us, to have people who care. But that doesn’t mean that their advice, however well meant, is the best thing for us.
For sure, a time may well come when you and work reach the end of the road and have to call it quits. And, if you’re a wise man, you won’t battle on until you’re on your knees. But I do think that it is good for morale not to give ground to MS until you need to. It’s a matter of balance, I think.
You won’t give yourself a relapse by working or not working, by the way. If a relapse has your name on it, it will bite you whether you are in front of a class or sitting at home watching daytime TV. In neither case will it be your fault.
I’m not a DMD-user, but I certainly agree with Alison that working/not working makes no difference to the risk of relapse.
If leading an active life increased relapses, we’d ALL be told, on diagnosis, to go home and stay in bed, thus reducing our risk. Thankfully, MS is not like that, and diagnosis does not come with a caution that you should do as little as possible. If you feel fine about doing something, then it probably is fine!
Can totally appreciate you wanting to return to work, that was my biggest hurdle being bored. took me a while to find something that keeps my brain occupied but doesn’t stress out my body. Your a teacher could they send stuff home for you to work on(marking work) comes to mind, or maybe a phased return. I also have ran Self Management courses for the MS society, common stuff things, but very helpful.