I know my fatigue is not as awful as many of my MS family, but I really hate the mind-numbing effect is has on my brain. Seriously. I have to take usually one day a month to stay home and do NOTHING all day. And I mean NOTHING. Getting out of my recliner to pee or eat is a chore. I don't even watch anything enlightening on TV, just daytime crap. Although, a paternity results show on Maury can be entertaining in a demented way.
Here's the other thing I hate about the fatigue. People who don't have MS don't get it. They will say something like, "Oh yeah, I get so tired, too!" The only non-MS person who doesn't piss me off with those statements is my friend who has nine kids and has a business out of her home. Just thinking about trying to live a day of her life makes me tired!
Do others have a difficult time describing their fatigue to people, especially their partner?
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10 months ago
5 comments:
Aw, MS fatigue, such a common topic when it comes to the "oh yeah, I get so tired, too." Just makes you want to pull their hair out, doesn't it?
I think that witnessing the brain meltdown, turning to mush, which often precipitates the fatigue shut down has helped those close to me, ie. mother, boyfriend, his mom, etc.
It often takes me AT LEAST 2 days every week of no obligations to recover from normal days. One thing I've noticed since MS has started to become so prominent is that I am unable to function with background TV news going on. So, no Maury for me. :)
I don't because my partner of 29yrs has fibromyalgia; she knows MS fatigue well. Yeah, we hate it when healthy people tell how THEY had trouble sleeping "last night too." Clueless.
Hi Kelly:
I would just like to introduce myself. I'm a new MS blogger, and my name is Robert. You'll find me at www.conquerms.com
I've added you on my blogroll- if you could please add me too. Give me a holler anytime.
Robert Groth
Hi Kelly, just saw your blog on Braincheese today. I have had MS for 20 years and my mom had it too--that is why I am writing you as we have that in common. I have just made a raving fool of myself on Braincheeses blog this week trying to figure out her puzzle. I have been reading her for 3 years and I thought I knew her as we were both psychiatric nurses but alas, I am missing some important clues. I love Stellarlife too. They are my 2 favorite blogs--I live in Maine and love those Seattle women....so many smart, wonderful people writing blogs on their ms...I never have attempted it as I am new to my computer and am just too fatigued. I will continue to check in with you to see how you are doing....if you are ever interested in such things, I have had many synchronicities in my life around MS--it just has to have been my destiny--it is just too weird..Can I tempt you with my story that for my senior college nursing thesis, we were told to write about the disease we had observed that intrigued us the most and I wrote my research paper on MS--It would be years before my mom got it and even more before I was dx....I had observed a young husband with MS in the orthopedic unit who was just having to be in a w/c for the first time and the social workers let me listen to how he told his wife this fact and how it would be changing their lives. Being a very healthy, athletic woman, this was all very interesting for me to be hearing--I do recall I had never witnessed such bravery and I wrote the paper in his honor.....I would meet him many years later in a ms support group which I attended trying to deal with my own light case of ms and I was being very bitter and sarcastic..holy shit, I had plans and this was interfering with my life as I had envisioned it would play out....he blasted me and put me in my place pronto--he had ended up having a very successful life as an accountant and his marriage survived--he told me to get out of the room and never come back if I was going to be having a pity-party with them all--I left and didn't go back. It would be years before I learned about the quality of grace and how I would learn to apply bravery to my situation. I don't know why I am telling you this but we all have our own story and I thought you might find it interesting. Take care, god bless, you are not alone with this, we are all different with differing symptoms and stories, take what you can from all of us and welcome--yes the fatigue sucks--just learn to ride with it and try not to push to much or it will come back and kick you hard--learn moderation, do things in small segments and really in the end you will be able to get everything done--just space it out...avoid heat, go out in the morings and evenings but never in the high heat of noon....get airconditioners...I live on the coast of Maine and go to the beach at about 5 when everyone has gone home and have it all to myself without the heat-get it? I chose not to have children either but not for the reasons you did--I chose not to pass on my genes since my mom also had ms--I decided it would end with me. I have cats instead! Joyce
Hi! Kelly
Yeah fatigue,it's a killer. I get comments like "pull yourself together" "you need to push yourself more" "go to the doctor and get help, you're depressed"
and last week one of my favourites:
"you really aren't trying very hard to help yourself"
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