Hi everyone I was diagnosed with RRMS 8 months ago and chose to start Rebif treatment just over 4 months ago. I have so far adapted to my treatment well with no side effects except for some small injection site reactions. I have completed 12 weeks of physio and have made it back to the gym although with a revised work out plan. I enjoy weekly Pilates classes and am trying to have a balanced diet. The only thing I seem to be struggling with is adapting my work life. I have the type of job where in the past I had no issue with working 12 hour days with no breaks, working weekends & bank holidays. My work were sympathetic at first but as I have recently not shown any outward symptoms ( i have tingling and pins and needles everyday which i suppose are mild symptoms), since being diagnosed they seem to have forgotten that I have MS. The hours have crept up daily and so has the requests to cover weekends again. I know it’s my place to put my health first but wondered if anyone else had struggled to change their work life since being diagnosed? I am aware that I am on borrowed time until my next relapse particularly if I continue as I am. C xx
I’m afraid the only way I learned my lesson was to relapse (more than once!). Complacency is a dangerous thing
You need to be completely ruthless about your hours and commitments. I know this is hard - it certainly took me long enough to learn it! - but it is really important. If you can manage 7 hours, then STOP at 7 hours. If you can manage 4 days, then do not do more. You might be able to do more/less at times of course, but you need to be very aware of how your body is responding and not just listen to it but ACT on it.
If need be, you should get your hours formally agreed with your employers: exactly what they can ask of you.
It may well help if your colleagues and managers know more about MS; that a lot of it is hidden and that fatigue can be crippling, etc. If you work somewhere biggish, the MSS might even do a talk for you - they have a PR programme aimed at spreading understanding of MS.
Thanks Karen, seems like a silly post now but wondered if anyone else struggled to adapt their lives. I have agreed a specific shift to do and at first I used to have the bosses telling me to ensure I was out of the door at that time but as I seem to have coped well, 1 of the bosses even pointed that out, i think they seem to have forgotten all about the MS. I find having goals helps me keep mentally focused, at the moment it’s to go as long without a relapse as possible. I think I experienced fatigue for the first time just before Xmas which scared me a little. Going forward I know it’s only me who can ensure that I only do what I can and no more. Thanks for responding to my post C xx
Not a silly post at all. I wasn’t kidding that it took me several relapses to learn to stop being complacent. If you can avoid that from Day 1, then it has got to be a good thing!