Living with fatigue
In any blog about living with “invisible” MS, it’s inevitable that fatigue has to come up. Like most aspects of MS, I suspect this one is different for each of us, but the unifying thing about fatigue is that most people with MS experience it in one way or another. For me, it’s something I live with every day. Not always the overwhelming a-million-dollars-won’t-make-that-feasible kind of fatigue that (for me) is often the first sign of a flare, but a hard to describe feeling of having a lot less energy at my disposal than I used to. The certain knowledge that one late night will be followed by feeling at least moderately unwell, probably for several days. It’s a symptom that comes with a cast iron guarantee that if you describe it to a friend who doesn’t have MS, you’ll get a sympathetic response such as “oh I know! I’ve been just exhausted since…….”. That’s the reason I don’t normally talk about fatigue, other than sometimes to admit that my decision to work part time was largely driven by my need to manage my available energy stores better.
There is nothing I’ve come across that “fixes” fatigue, but after years of trial and error, I hope I’ve found ways to live with it that work for me. For example, I’ve arranged things so that I go into work on as few days as possible and do what I can from home. The downside of this is that I’m typically really busy on the days I do go in. When you add MS fatigue into the mix, a completely full day at the hospital is an enormous challenge, but somehow, while I’m in the middle of things, there simply isn’t any opportunity to be overwhelmed and I can usually delay the inevitable crash until I get home.
I don’t know whether any others with MS can sometimes postpone succumbing to fatigue for a few hours by making themselves too busy to deal with it? It sort of works for me if I only try it once or twice a week. But some afternoons that “three o’clock wall” is almost physically painful to push through. When I get home after a full day, I am done if I make the mistake of sitting down. There’s no way I could move in time to actually cook dinner or get some exercise or do any of the things I like to do in the non-work parts of my day. Many times I’ve found myself sitting in my living room six or more hours after I know I walked in the door, with no idea where the time has gone. But despite the toll it can take, cramming my hospital-based work into as few days as possible has allowed me to continue in the profession I love so far. One of the greatest blessings of being in an occupation where I can afford to work part time (a luxury I know many people don’t have) is that I can do this and often take the next day to recover. I love being at home a few days most weeks, rather than always having to be out of the house and appropriately dressed first thing. And there’s no doubt it’s easier to do things like regular exercise, enjoying the garden and putting time into friendships - despite having limited energy - if work is not filling all the functional time you have.
I often wonder what my colleagues think about my work schedule. Do they see me as lacking ambition if they realise I don’t rush off to see patients in Private on the days I’m not at the hospital? Perhaps they would be wildly jealous if I boasted that I can choose to stay in my dressing gown until lunch time some week days? Probably most of them don’t even notice my unorthodox work choices! But I wonder how many of them would see the benefits in the work/life balance MS has forced me to choose if they knew the realities of my week?
I’m not one to make lists such as “the ten top reasons I’m glad I have MS”. I’m not glad I have MS. But along with those who have written such lists, I acknowledge there are positive things that have come from the experience so far. I love the wonderful friends I have made through having MS (you know who you are – thank you!) and I am grateful to have stopped trying to clamber further up the “ladder” of academic medicine. By rearranging my life and re-evaluating my priorities, I’m finding I can enjoy a fulfilling part time work role as well as many of the other things that are important to me – even while dealing with *$(#*!@#$*! fatigue on a daily basis. That ladder might have been easier to climb in the days before MS came into my life, but I’m not sure I’d ever really thought through why I was trying to get to the top. There’s a lot to be said for enjoying the view right where I am!
The Unaffected One