Never Not Tired: A Story Of MS Fatigue

Never Not Tired: A Story Of MS Fatigue

Thirty-six: the number of minutes it has just taken me to plug my phone in to charge, and make myself a cup of tea. 

Or, to be more specific; the number of minutes it has just taken me to drag myself off the sofa, make my way across a room, crouch down to plug my phone in, lie-down on the floor in a state of exhaustion, drag myself off the floor and through to the kitchen, have a clumsy fumble with the packet of tea-bags while leaning against the counter, and finally park myself back on the sofa.

You might think I could do with a rest, but I’ve just had my second of the day: an hour long afternoon nap.  As a result, the thick onion soup that was my brain has alleviated a little – enough to attempt to write a blog post – but my body feels like I’m pushing through neck-deep treacle, without the strength to combat it.

Fatigue. AKA: the most hellish of all hellishness. The word ‘fatigue’ does not do justice to the all-encompassing, debilitating nature of the symptom. Nor does the word ‘symptom’, for that matter.  But what would I call the one aspect of my MS that has stolen so much life from me?  That would all but decimate my happiness and quality of life if it wasn’t for my own stubborn refusal to allow it to do any such thing?

I do not have the mental capacity to even begin to attempt to find such a word. 

This is the first time I have written about fatigue, despite it having the most impact on my life.  It always felt too big, too scary, too impossible to ever effectively articulate.  But then I asked my Instagram followers what they’d like to see written about, and fatigue was the overwhelming response (out of about five replies).  So here goes.

At the age of fourteen my English class were tasked with writing an essay on something we didn’t particularly like about ourselves; a perceived character flaw.  I wrote about my “laziness”; my lack of enthusiasm for joining my friends in extra-curricular activities, my daily post-school nap that didn’t feel much like a choice, my instinctual aversion to too much physical exertion, my ‘slowness’.  I think I wrote that essay because even then I knew something wasn’t right, deep down - I knew I wasn’t “lazy”, “slow”, or “unmotivated”, and I wanted somebody to tell me so.

I remember experiencing what I now know as “brain fog” in school, and starting to get the good ol’ thick onion soup brain every afternoon – something I thought was a “normal” post-lunch energy slump despite none of my fellow classmates ever also resembling a zombie. I remember feeling like I was fighting through each day, just to get to the end of it.  

In heart-wrenching hindsight, fatigue has been my companion for a long time; pre-dating my diagnosis of multiple sclerosis by years, but even then – even when, at 16, I was given a name for the physical symptoms I was experiencing, it wasn’t a lightbulb moment explaining why I was always so fucking tired. I just didn’t put two and two together.

In my early twenties I felt like my fatigue improved slightly; I was working in bars with my ‘working day’ beginning at 5pm – something that suited my natural energy cycle. As a result I think I instinctively fell into a routine that helped to mitigate the impact fatigue had on my life (and I was in my early 20s, so daytime napping and long lie-ins were an acceptable part of the lifestyle).  I even looked after a toddler for two days a week, sometimes on the same days as an 8-hour bar shift – a feat of human endurance I look back on in awe.

Fast-forward seven years or so, and my fatigue has significantly worsened.  In 2020 I decided to stop working, after four torturous years of going from full-time, to 25 hours, to 20 hours, to 16 hours.  (Including one 6-week period of fatigue-related medical absence, and one 6-month period of unemployment).  Now I write when I am able, and invest every other drop of my energy into the life that exists outside the sphere of employment.  

But there is no aspect of my life that escapes the heavy fog of fatigue.  (Aside: “fog” is a relatively decent descriptive word, but fatigue has a weighty presence to it; a clawing and a pulling.  Almost as if a living creature resides inside my brain and body; feeding off me, syphoning my energy.)  There is no aspect of my life that goes untouched by fatigue:  from the big things (“am I capable of looking after and raising a child?” Probably not), to the small things; the every day management of to-dos and activities.

For example; I am planning to go for a swim tomorrow. How much time will a thirty minute swim take out of my day, do we think? 

Well, if we think about the fatigued state of my limbs after a thirty minute swim (let’s not even mention the post-exercise dizziness), I could be looking at close to another hour to peel off the soaking suit, dry myself, and dress - and I’ll definitely need a rest when I get home. 

I almost don’t believe it myself when I see it written down.  Which brings me very tangentially onto my next point; how isolating living with fatigue can be.  Because who is going to want to hang around waiting for me to start to function again after a quick morning swim?

I actively prefer to do things by myself now, because everything is so much easier when I am able to move at a pace that suits me.  So much less stressful, less taxing, less exhausting.  When I am with other people I always find myself pushing my body to move at their pace – something which has a knock-on impact for me, as well as probably making it appear to others that I’m much “better” than I really am.  A new boundary that I’m working on. (I bit my partner’s head off the other day for wanting to get out of the car and into the house quickly – baby steps.)

And aside from the lone wolf act, there are a few other things I do to ensure that I’m living as well as I can, alongside fatigue:

1. Mitigate triggers (heat, light, ambient noise…). Brightness seems to turn my brain to mush, so I never go anywhere without a pair of sunglasses – even on relatively grey days.  When I worked under bright, overhead office lights I wore tinted glasses in the workplace – I kid you not.
   

2. Hydrate, hydrate, hydrate.  As long as there’s easy access to a loo.
   

3. Good sleep makes absolutely F all difference to fatigue, but poor sleep on top of it is a nightmare out of all proportion.  Getting enough rest is always my numero uno priority in life.  Right now that involves pain-killers, CBD oil, ASMR (Google it – so good), and reading until I can’t keep my eyes open.
   

4. Don’t always “listen to your body”.  OK, hear me out on this one.  Life is about more than managing MS, and sometimes you need to throw all caution and routine to the wind for the sake of your mental health.  (Sorry every medical professional ever) but sometimes a little “booming and busting” isn’t a bad thing.  Go to that event, push yourself to do that thing, and don’t feel bad about the week in bed that follows. Trust me.
   

5. Do you. Figure out your own priorities in life, and your own natural energy rhythms.  In my experience, healthcare advice for “managing” fatigue (and living with MS in general) seems to be very much a ‘one-size-fits-all’ approach. But not everyone wants to prioritise staying in employment for as long as possible, and some of us function better when we “should be” in bed (hence why bar jobs worked for me).  It’s your one wild and precious life; you don’t need to follow the script.