I have been diagnosed with RRMS in January 2018 but I have had symptoms of MS for the past 3 years but was originally diagnosed with Non Epileptic Attack Disorder. But i was told in January the diagnosis regions have changed and i can now be confirmed as having RRMS. Since I was diagnosed i have so many mixed emotions, on the one hand it does suck its confirmed I have MS but on the other hand I feel a bit better now people not thinking im overreacting about how tired I am or having to hide my tremor attacks from people.
My real issue is the fatigue. I feel like I’m running out of ways to deal with it and its affecting me in a big way.
I currently work full time but I get so tired during the day that I can’t concentrate and feel like I have to sleep right there and then. Everything just feels really heavy as well, especially my arms. I feel like i have to hide how tired and weak I am around work and when im out as I don’t want to be treated differently and for people to think im playing on my MS or to feel sorry for me. I always plan to go to the gym or do some sort of exercise during the week after work but by the time 5pm rolls around the work day has just zapped me of all the energy I have!
When im at home I feel like all I want to do is sleep. I hate this feeling as im only 27 and im living with my boyfriend who enjoys going for walks and gets up early in the mornings and I just feel I cant do as much as him. Im afraid it may affect our relationship too. He says he loves me and is there for me 100% but surely theres only so much someone can take of being with a constantly tired girlfriend?
Im not on any medication at the moment as my consultant and MS nurse believes they would do more harm than good at the moment for the type of RRMS I have.
Has anyone got any suggestions as to how i can improve on this or what I can do?
Bethany, I hope your boss/HR dept are aware of your diagnosis. Lots of questions but is it possible to have time-out during your working day for a snooze/flop time, maybe by having flexible working hours. If your work is more physical than desk based can it be made easier, although I’ve found that fatigue does what it wants when it wants! Lessening your working hours would be perfect but of course that will affect your pay, unless you can find a job that pays more (I can imagine your response to that comment!)
Both you and your wonderful boyfriend are on a learning curve and you must look after yourselves. Nobody knows what the future holds for any of us.
I am in a different position than you, having had MS since I was 15 (I’m now 39) and now SPMS, but I wanted to saying that I really understand as fatigue is a massive issue for me. MS is a disability on the Equality Act - this means that your work have to make reasonable adjustments for you as part of the law. I also had support from ‘Access to Work’ which was great and so helpful. I know it can be daunting telling work (if you haven’t already) but I just told my boss and HR in case I needed time off due to relapses.
Just an aside about the medication - I never had any, as the neurologist and MS nurse didn’t feel like my RRMS was ‘bad’ enough (I had very few and far between relapses - like 8 years between them at one point) - but I often feel that if I had been offered something I maybe wouldn’t have progressed onto SPMS as soon as I did? Good luck with everything - I know it is a big learning curve when just diagnosed.
for me what really helps i went on best bet diet no gluten,low fat,NO DAIRY AND LOW SUGAR IT REALLYs HELP WITH MY SYMPTOMS AND FATUQUE ALSO I TAKE LOTS OF SUPPLEMENTS AND I STOP TAKING THEM I FEEL MUCH WORSE,I DID BUY THE BOOK BY JUDY GRAHAM MS NATURALLY IT AS LOTS OF GREAT ADVICE IT GAVE ME A BIT OF Hope.
Hi Everyone! Thank you all for your lovely and helpful comments, I will take them all on boared and try and adapt as best I can to this crapness that is MS! xxx
Thank you all for your lovely and helpful comments, I will take them all on boared and try and adapt as best I can to this crapness that is MS! xxx