Fatigue is the number one symptom reported by people living with MS. But because it is hidden, it can be frustrating to get others to understand what you are feeling. Have you found ways to help your family and friends understand your fatigue? And, what advice would you give to someone newly diagnosed on how to explain MS-related fatigue?
Most of the time I say I feel as though I am knee deep in mud with the wind in my face, trying to move forward. The doc put me on amantadine 100 mg bid for 5 days with two day off so I dont become immune. one pill taken two or three hours after the first pill. I am doing more than before where I was a big bump on a log.
What an apt analogy to describe fatigue. I may use it. Thanks!
After many years of going through life with my game face on , I decided several years ago that it's better for family and close friends to be able to read my face for me.
When I don't pretend that I'm not looking for a clean place to lay down (grocery shopping ,eating out, the zoo, etc) then it's more honest . My family will tell me later that I was slurring my words a bit, dragging a foot, etc, and the decision to cut the activity short is taken off my shoulders.
I also got a visual aid for me and others: a walker. I was 47 years old, and it took a while before I actually appeared in public with it. But the big advantage is that it reminds me and my family of the reality that one minute I can be fine, collapsing the next. It also gives me a way to pace myself when there's nowhere to sit.
Fatigue is also the worst thing because it affects everything else. When you can kinda power through pain and dizziness, numbness etc, then you're able to feel a bit more normal and part of the human race. But exhaustion leaves you without the power to divert and distract the mind.
Try my Tiredness Triage, inserting your own favorite activities:
1. Sorta tired: walk outdoors, grocery shopping
2. Fading somewhat: stay home, dye fiber, cook an easy meal
3. Definitely tired: spinning yarn, needle felting, weaving
4. Totally limp: knit, crochet in bed
I describe it as the spigot syndrome: a water spigot gets put on your body, it gets turned up full blast, all your energy gets sapped and fast. I combat it by keeping myself moving and working, but sometimes you wake up feeling like that. That is when you say to people, "I'm sorry, fatigue is kicking my butt today. I'll get back to you when my body and mind are back on speaking terms."
For the newly diagnosed, explain it as the spigot syndrome because everybody can understand that concept. Also, don't be ashamed when that happens! I get so frustrated sometimes when I want to do this or that or especially when I have a shift at work and have to call in sick. I have a hubby who has Crohn's and he gets the spigot syndrome sometimes also, so he can relate and not let me beat myself up over something I don't have much control over. Thankfully I also have an understanding boss and HR department where I work. My family is awesome with this, reminding me that I'm no less of a person when MS decides it's going to run the show for a little while.
I feel so weak most days and I have been taking provigol for the fatigue and it seems to be helping me out with it and i can actually get out of the bed and due some cleaning and some work around the house. But I'm only taking half of what I'm supposed to be taking. It's like day and night with the way the medicine works for me I seem to have noticed.