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Relapse, please can someone give me some advice.

Hi, I would be very grateful for any advice offered to me. I just don’t know what to do or what is “right”. I have been having a relapse since 24th August, I am currently on Tysabri treatment as I was having relapses every 4 weeks. Each one worse than the one before, new symptoms. Since having Tysabri I can now go back to work part time and live a “normal” life, with my daily support. My relapses seem to be every 3-4 months now. My job is very demanding, like everyone else! I am a Manager of a children’s Nursery. My relapse started while I was off work (Nursery closed for 2 weeks over August) just typical! So I saw my Nurse and she offered me IV steroids, I chose not to have them as I find it all very stressful having to go to the hospital 3 days in a row, having them find a vein (last time it took 12 attempts). I hate having to have the canular kept in for sleeping, washing and just having it at home. I hate it. So I thought I would use good old fashioned rest to help me. I put a letter in to my GP who I usually see, he signed me off for 4 weeks until 24th September, but me being the stubborn little cow that I am said I would go back on the 10th September, today. He then crossed this out on his form and put the 10th. So I went in to work today and felt absolutely terrible. It was too much. I was home by 12. I saw my line Manager who said to go home and rest, I came home and slept for 3 hours. I am shattered and I know I have myself to blame. Now what do I do? Do I contact doctors and let them decide when I go back? Or do I just rest this week and go back next Monday? I just dont want to seem like I’m taking the piss, it’s just so confusing and I don’t know what to do. I don’t really speak to anyone else with MS, but I come on here regularly and see how strong people are and wise. I’d be very grateful for any advice with what I should do? I’m sorry for going Anon, I just didn’t want anyone to think I was being a selfish cow. Thank you :slight_smile:

Hi, I can sympathise with your situation having just gone back to work after 5 months off. I work in a primary school in a job I live but that you have to be on top of your game. I was signed off at first for 6 weeks by my GP but being a fellow stubborn cow wasn’t having any of it. Asked GP for 2 weeks which she reluctantly agreed to. After 1 hour in school was sent home by head teacher and straight back to doctors. Walked into her room in tears and uttered the words…" you were right!" She issued me with a new sick note there and then. What I have learnt in this short time of having MS is there is no point fighting a relapse as it just takes longer to recover. I took the time off ( like you am relapsing every 4 weeks at the mo) and am now back at school feeling much more like myself. I think maybe just go back to GP and explain what happened, they will hopefully just issue new note. Fingers crossed for you. Carolyne

Thank you for your advice, think that’s what I should do. I know I’m stubborn cow, and I hate to think I’m letting it “beat” me! Hope you have a good term with good health :slight_smile:

Hi there , I was diagnosed 18 months ago , and had two relapses in the time … I understand the frustration and upset. My only advice is see how you feel 1 week at a time. I went back to work to soon as I was worried about people b**ching about me . Got to work, with in an hour , I went even further down hill as I was so stressed about what people though of me. Thankfully my boss realised something was very very wrong. ( I normally speak at 100 miles and hour, and I could barely string together " yes a coffee please") . I have had to except that sometimes you just had to let your body heal in its own time. The boredom is the worst part . Hope you start to feel better soon… xAnna

Thank you Anna :slight_smile:

Hi Anon,

I can understand how you feel, but have learnt the hard way, if your body says rest then do just that. Don’t try and fight it it only makes it worse. I wouldn’t say you are a stubborn cow, just not upto date with what your body is telling you. Go back to the doc’s and ask for more time off, and then see how you feel. Only you will know.

I really hope you feel better soon and able to carry on with your job. All best wishes.

Janet

x

Where I work they do a thing called phased return to work for anyone who has been off for a long time. So you might start with mornings only for a couple of weeks before going back full time, perhaps something like this might work for you when you feel ready to try again.

Thanks Janet, I am feeling like rubbish today. My body is exhausted. It will be a day spent on the sofa! Floopy that’s a good idea, I will email my line manager about it. I can’t believe how terrible I felt at work yesterday. Thank you for your advice :slight_smile:

Hiya, So dragged myself to doctors and he has signed me off for two weeks. I didn’t argue and just accepted it. Now time to rest and try to get better. I’m going to have a chat with my boyfriend to see what he thinks about me having IV steroids. I just don’t know what to do and I think out of everyone around me, he knows me best. Thank you for all your advice, I wish you all good health xxx

Glad you went to the doctors, Wishing yo a speedy recovery. Carolyne.

Hi Anon,

Pleased to hear that you went to the doc’s and are now listening to what your body is telling you. Floppy, yeh I like it!!

Wishing you better very soon.

Janet

x

Thank you for your support. It’s nice to talk to you guys who understand MS, I feel that my family and boyfriend support me well, but never understand how I “feel”.

I contacted my nurse to start a course of IV steriods. Hopefully I’ll be like “superwoman” in a couple of weeks, well a version of “superwoman” anyway!

Thank you again xx