So I just wanted to vent a little bit. As MS goes, I know I am pretty lucky. I’m on medication that controls my symptoms pretty well and the pain and stiffness that accompanies them but I do struggle with fatigue. I work in central london commuting over an hour each way, and as I work in hospitality hours are long with an expectation to work ‘hours as required’ above and beyond my minimum contract hours of 42.5 hours a week. I do get very tired on a daily basis but I show up everyday pushing through and since my diagnosis several years ago I think I’ve taken only 2 or 3 days off because of MS, even the day I was diagnosed I went back to work! This week my fatigue has been particularly bad. I was falling asleep at my desk. I even took myself off to our rest room on Monday to try to have a sleep but it didn’t help. Yesterday I hit my breaking point and couldn’t do it anymore and I got upset. Upset by how tired I felt, upset by how debilitating it is to feel that way and because at some point I might have to address whether this job is right in the long run. I’ve taken today off as well but what is really annoying me are the comments. My boss was fine with me being off but the response was I’m sorry you’re not feeling well. One of my colleagues oh just get an early night, get the rest your body is craving, and my husband seems to think I’m depressed and that I just need more vitamin d. I know it’s a hard thing to understand until you experience it but I would love to hear other people’s experiences, any advice they’ve got to manage it, or to explain it to other people.
I hear you! I used to be a postie and when fatigue hit I found myself delivering post and then crying in my van between rounds. This was before my diagnosis so I couldn’t actually explain to my boss/people I work with why I felt like that.
I think it’s wonderful you’re still able to do the job you’re doing. No doubt it will be really hard at times, maybe you need to consider talking about not overdoing it with the hours. People who don’t have ms will burnout after an excessive work week.
Vitamin D helped majorly with my fatigue but there is no miracle that’s going to get me back to 30k steps a day and then parenting after. But people can only really empathise through their own feelings, so try not to feel too annoyed by your husbands response.
Hi
It’s so bloody hard trying to explain to people what fatigue is like in ms. I found that using the “spoon theory” made it a bit more understandable.
When I worked and fatigue started becoming a problem I used to take myself off to the FirstAid room where there was a bed, and I would lie down for a 20 minute power nap/ disco nap/ nana nap. My team were pretty great about it, and they could see when I was starting to flake so it was never an issue.
I think it was the spoons that made the most sense to them. I’m sure there were plenty of people who thought I was taking the proverbial but I was never made aware of it. Having said all that it was an office job. I used to work in hotel management, which is a whole different kettle of fish and I doubt people would have been quite so understanding!
Good luck 
Hi catherine,symczek, I suffer terrible with fatigue, I’m nrSPMS and this is so debilitating and no one that has never had it will ever know, it’s not just being tired after a days work, or after exercise, it’s so much more than that. I explain my now as being like a computer, ie the brain is the computer and it’s lost it’s wifi signal, so it won’t work, because without that signal is knackered. I can’t function when it gets like that, can’t even speak, so I totally sympathise with you.
Maybe sadly you will have to think about your job and if it were me, I’d let some people, ie your husband have a read of some of these replies, just to give him and idea, maybe even your work colleagues.
Good luck love and look after yourself.
Jean x