I wish I had some wisdom or advice to share with everyone on fatigue… unfortunately all I can currently share is my current battle with it. One of the worst experiences for me, dealing with MS, is the overwhelming fatigue. You know, the complete exhaustion, heavy headed, “how am I going to get anything done”, completely unpredictable feeling? When it hits me all I can do is lay down in complete silence with my eyes closed, hoping it fades away. The hardest part is being young and feeling like I’m 60. I have so many things I want to accomplish in the day and it’s so frustrating to be weighed down by this invisible symptom. It’s even harder to help other people understand what I’m going through.
When I was first diagnosed I used to refer to my fatigue as a “marshmallow headache”– like there was a giant marshmallow inside my head expanding within it, placing slight pressure on the inside, and numbing my ability to function. I try really hard to push past the fatigue and to not let this symptom hold me back, but that pushing ends up using more precious energy so I need to find a new way to do things and schedule my time. My goal for the next little while is to try to sleep more than usual ( hopefully around 9 hours a night), as well as try to establish a regular going-to-bed and waking up schedule. These sound like easy fixes but when you’re a full time student, work, and volunteer, it’s easy to cut yourself short on time. Hopefully these things can help me minimize this symptom a bit… and if not they are good habits for overall good health to develop anyways. I read a really good story on dealing with invisible symptoms of chronic illness that I’d like to leave you guys with a quote from–I think it’s a good story to share with others to help them get a little glimpse into what you might feel with MS. I know I forwarded it to a few people myself.
“When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.
An excerpt from the Spoon Theory by Christine Miserandino