I had one of those earth-shattering, life-changing moments of clarity the other day.
I closed my eyes at 10am, just to have a quick cat nap.
Two hours later, I woke up. I was incensed, maddened by the sheer waste of time and looked with dismay at my unaccomplished ‘To Do’ list.
As I stumbled into the kitchen to make a cup of strong coffee, tripping over the cat (she’s tiny but deadly), I stopped in my tracks. MS fatigue. I expect everyone else to take me seriously about how debilitating it can be, how much of a real symptom it is. And yet… I don’t.
Instead, I see it as a major inconvenience, something to be tolerated if I am to get through the day intact. It’s a distraction, holding me back from my real life. Or is it? I take my other MS symptoms seriously and factor them in, so why don’t I do the same with my most significant symptom, fatigue?
Over the last two years, I have railed against the pointlessness of all this sleep. I flounce to my sofa in anger, utterly fed up at yet another hour passing me by with absolutely nothing achieved. This had to change.
Rather than getting angry, I am now going to start respecting this fatigue, just as I accept that nerve pain, foot drop and stumbling are part of my life now. I can’t change it, so I will accord it the same respect. The fatigue is my body’s way of telling me to slow down, my brain needs a rest. I will view it as a valid symptom, not a major annoyance.
I tried out this new way of thinking yesterday. I had some things to do in the morning, and could feel the fatigue creeping up. Back home, my brain shut down. The To Do list was put to one side, I got my duvet out and fell asleep. I woke up feeling better, accepting that this is my life now. I can’t change it, but I can change how I approach it. I can absorb it into my life or I can go on forever feeling angry and a failure.
And you know what? I feel that in some way I have made peace with myself. I’m not failing any more.
100% agree with you (yet again). I had the good fortune to go to a ‘Fatigue Management Course’ at REVIVE MS Support here in Glasgow. I only did it cos I thought it might be interesting. Anyway, to cut a long story short, I went through calling it the ‘anger management course’ to the ‘sadness management course’ to the ‘acceptance management course’ and finally acknowledging the ‘fatigue management course’.I cried a lot. It changed my life. Instead of rallying against this horrendous fatigue I now schedule it into my day with proper rests therefore allowing me to carry on enjoying my life.
I hope you have access to your local MS support group.
Many congratulations on yet another excellent blog.
Best wishes,
Jenny x
Thank you Jenny!
You’re so right about scheduling sleep in.
I actually went to a fatigue management course but I think it’s only now I’m reflecting back on it and putting what I learnt to proper use.
It was a fabulous course and I met some great people but perhaps I hadn’t quite got to the point where the fatigue was becoming such an issue. I was still concentrating on adjusting to all the other symptoms.
It felt so different yesterday when I had a nap. Perhaps we just associate lying around all day with laziness and that’s where the problem arises?
X
Yet again, you hit the nail on the head! Better to accept this as just part of the crap and not try and fight – however much of a fighter you are, fatigue wins in the end grrrrrrrr
Thanks Suzy!
I feel a whole load better for accepting it. Kind of like a weight off my mind and one less stress.
X
Hello Stumbles
Long time no see.
I find fatigue management and especially the acceptance of it is a major factor in living with MS.
I found understanding my circadian rhythms key to managing fatigue on a daily basis. This was achieved with the help of a neurophsycologist
Chris
Hi there!
Yup, I think acceptance is the key and it’s taken me a very long time to reach it. Still learning!
X
i slept until noon today :p was just knackered lol i have gotten looks from people and comments about being lazy but i ignore themn or tell them to just shut up :p
Well said! It took me a while to convince my friends I wasn’t lazy, meh.
x
Hi ,I have been talking about this very subject to a newly diagnosed girl today ,you know the feeling …head in the shed …. And we agreed the most difficult symptom to address and accept is the Fatigue. I think it’s because its an invisible symptom and we have all heard people say who have not got MS , ” o I know I get tired like that ” noooo it’s a tiredness that wraps itself around your very being without warning without a reason and knocks you off your feet ,an invisible anaesthetic that you just have to give into …
Absolutely. It’s like a brick wall, or being coshed over the head. I think I spent so long trying to convince other people of how serious it was, that I completely forgot to convince myself!
Now I’m taking it much more seriously, and this acceptance really has improved my quality of life a huge amount.
x
In the words of that Monty Python song in Life of Brian you must ‘Always look on the bright side of life’
Very true! I do try, lol.
x
I’d like to do a fatigue management course – are they run by the ms centres? There’s one down the road from me which I’ve been too chicken to visit but maybe it’s time to bite the bullet!!
I’ve never been one to sleep during the daytime. For me, sleep is for bed at nighttime, although I do factor in rest breaks in front of the tv watching reruns of Made in Chelsea!! Fatigue usually hits me when I’m least expecting it – usually when I’m shopping or queuing for something. It feels like someone’s pulled my batteries out.
For me I think it’s a psychological block – when I was growing up my parents used to nap a lot so I look on daytime sleeping as something for old people. Not anymore though – I feel quite envious of people who can power nap. I need to take a leaf out of your book!
x
Hi!
My MS nurses and OT organised the course and it was brilliant.
Know what you mean about daytime naps – I used to have a real fear of them. Now I think, I need that nap otherwise my entire day will be ruined. Other times you just have to sleep no matter what. Maybe that’s why I prefer naps on the sofa rather than in bed – I still somehow feel I’m at the centre of the action – the telephone, kitchen, etc. Psychological, but helps!
X
Wow, yes, brilliant! It is hard to not feel lazy or worry that others think you are lazy when the fatigue hits. Sometimes, as you noted, it can be within hours of waking up. Right now, it’s 10:30 am and I am incredibly tired. I slept well (I think), have had coffee and breakfast, and just want to take a nap! Problem is, I am at work, so that might not be an awesome idea, unless I can hide some bedding under my desk, a la George on “Seinfeld”!
What’s helping me when my energy is seriously flagging is getting up and moving when, alas, I can’t nap. I’ve begun a slightly embarrassing routine of walking up the stairs in my office building twice a day. I realize many with MS can’t do that, and I’m hugely grateful that I am still able to navigate stairs. All that said, I will keep your wise words in mind when I just want to sleep and am in a proper environment to do so, lol. Okay, off to hike up some stairs before….zzzzzzzzzzzzzzz……..
Thanks Cranky!
When I get tired in work, I just pretend to be looking at something really important, then nod off for five minutes or so. Works every time – unless the boss is reading this. If he is, sorry Boss!
Mind you, like you, I also find moving around can help to keep me awake if there’s no way I can sleep.
X