Six years of living with MS: Everything I’ve learnt about fatigue.

 

I was diagnosed with RRMS over six years ago and in that time, I’ve found fatigue to be the single worst side effect of living with MS. Relapses might be more visible and dramatic, but there’s something about the pernicious and persistent presence of fatigue that is so wearing.

 

I’m not saying I enjoy my hand deciding to take a stand against the commodification of food in a capitalistic society by flinging my chips across restaurants instead of putting it in my mouth, I just think I’d find my hands personal politics easier to live with if I weren’t also exhausted to the point that this is the best joke about that situation I can currently think of.

 

I’m not alone in this position, over 60% of MSers say that fatigue is the symptom that impacts their lives most, and the other 40% agree fatigue is a huge bastard, just maybe not the biggest one they’ve ever met. The entire community agrees fatigue is completely terrible – but what can we do about it? Here’s stuff I’ve tried that made a noticeable difference to my fatigue levels.

 

1. Get enough sleep.

 

This might seem like an obvious and unhelpful point, especially if it’s your MS symptoms that prevent you from getting a good night’s sleep. I was furious at anyone who suggested it for a long time, like thanks, get more sleep when you’re tired I never would have thought of that for myself. But then I started to notice that when I get enough sleep (for me personally a minimum of 10 hours) I did feel less like a zombie.

 

Obviously, this was a disaster because I hate it when people who aren’t me are right about things, but I’m sharing my experience with you anyway because that’s how dedicated I am to the MS community. (I’ll wait here for my impact award)

 

2. Get enough fuel.

 

It took me two hour-long sessions with my MS nurse and a month of keeping a food diary to fully grasp the concept that food and drink is the fuel our bodies need to function. My fatigue is noticeably worse when I haven’t had enough to eat, my hand tremors re-emerge when I’m hungry and my cognitive function is worse.

 

Actually, I’m pretty hungry now, that’s probably why this tip is shorter than the first one. I better have some cheese and crackers.

 

3. Don’t get too hot.

 

You’ve heard the saying ‘Dogs die in hot cars’? Well, that only caught on because my alternative ‘MSers turn into useless shredded wheat like husks in any hot situation at all, even, annoyingly what they used to think of as a nice hot bath which they’ve now had to replace with an okay tepid bath’ was far too wordy.

 

If you want to keep your fatigue levels down you need to stay cool, by which I mean keep your temperature low not start dressing like the Fonz, who’s outfit ironically would make you far too warm on a hot day.

 

4. Ask yourself ‘Is this a good use of my limited and precious energy?

 

This was advice given to me by my MS nurse last summer and it’s completely changed the way I think about and manage my energy.

 

This advice made me accept for the first time that my energy is limited and it also made me realise I have a choice in how I spend it.

 

By asking myself this question I’ve found loads of ways I can save energy by not doing things I don’t want to do.

 

It’s little changes like do I really need to waste energy chopping onions when I can buy them pre-chopped from the supermarket instead?

 

It’s also bigger changes like do I really need to waste my energy restraining myself from causing physical harm to healthy people who tell me they’ve ‘been tired recently too’ when I could just push them down a flight of stairs instead? (You’ll be surprised the difference that last example makes to your fatigue levels)

 

Like I told you at the start of the article these tips are all just things that I personally have found helped me manage my fatigue levels, I’m no scientist (unless you believe my forged certificate from the Institute of Science and Technology which trust me you wouldn’t because I wrote it in crayon and also I just told you it’s forged) but I can tell you that really trying to live by those 4 rules has had a big impact on my fatigue levels, I hope if you try them it can make a difference for you too.

 

Honestly though, I think the thing that has made the biggest difference to my fatigue in the last few years is learning to accept I need to make meaningful changes to my lifestyle, you know all that boring hard work and growth stuff?

 

It’s been worth it though because I’ve learnt to focus my precious energy on what’s really important to me – staging a spectacular on stage retelling of the Spice Girls story starring only me and my cat.

 

It’s going to be beautiful.

 

 

@letty

 

Hi, I’m Letty McHugh an artist and writer living in Haworth, West Yorkshire.

 

My hobbies include falling off ill-advised clogs into oncoming traffic, an adventure sport I created and expect to sweep the nation soon.

 

I’ve been making jokes about my MS on the internet since I was first diagnosed with RRMS in 2012.