Everyone feels tired at some point. Right? Whether we feel overworked, are sleep deprived, have a cold, are extra stressed. That feeling of utter exhaustion zaps us! However, this seems almost a constant in my life. Fatigue is one of the most common side effects of stroke. So, you’d think after 15 years as a stroke survivor I would’ve become used to this. However, it’s still a huge source of frustration that I, and many, grapple with today.

Initially, I remember attempting to push through this concrete-like tiredness, stoically carrying on and ignoring its presence. I reflect on this in my book, Reinventing Emma –

“…I still have to have my teeth cleaned and shoes put on before Susan, the porter, comes to take me to my scheduled assessments for the day. I’m dead tired already! Even though I feel as though a concrete fatigue fog is squashing me, I don’t want to rest. I want to start fixing my body. NOW! If I could physically throw a tantrum, I would! ….” (p.120).

Although this feeling is ‘normal’ now, the associated frustration still robs me. Despite accepting its permanency in my life and altering my days to accommodate it, some days (like today) it stubbornly won’t meet me halfway.

The covid19 cloud seems to piggy-back the fatigue fog, weighing me down even more. Even prior to this isolation, when my fatigue levels peaked, the prospect of exiting my unit to do the simplest of tasks seemed beyond difficult. Now, the added covid19 restrictions mean that extra precautions I need to take when going out, seems to add another layer of effort. From packing sanitiser to dealing with the post isolation anxiety of contracting the virus. The extra stress and added tasks mean it’s easier to not go out. The enjoyment I get walking my dog in fresh air, grabbing a takeaway coffee or meeting up with a friend, now seems tainted – bogged down with covid effort! As I write in my book,

“Instead of feeling buoyant and free, I felt like a ship’s anchor! (p.140)

Trying to explain this to others is an added frustration. Whilst it’s important to educate people, their attempts to find common ground or fix it, only seems to fuel the overarching frustration. Their late Friday night drinking after their full-time work, home-schooling, domestic duties for their families, make their tiredness seem justified. On the other hand, scanning my week of casual work, no kid responsibilities and an 8 hour sleep seems ludicrous! I’m inwardly embarrassed to vent.

Others’ justifications of their tiredness just seem more valid and mine, more trivial. It’s often easier not to even mention it. Their seemingly helpful remedies of rest, comments like, “You have had a big week Em” (when it’s been relatively quiet), further frustrate. However, avoiding addressing the issue only limits their awareness of its hovering existence. The feeling of isolation worsens.

As I write in my book,

“…In terms of tiredness, I feel at this point ‘the queen of fatigue,’ but I have to remind myself that it’s all relative “ (p.168)

This is still the case.

Being labelled a ‘Queen’ of anything is an absolute honor. But labelling myself ‘the queen of fatigue’ is hardly a noble position! Although, over the years I have certainly adapted to fatigue’s relentless existence, I still seem to wear the “Queen of Fatigue” title!

The invisible nature of this deficit makes it easy for those around you to not understand. They don’t see the mammoth ball and chain you’re lugging around. It’s so hard to articulate when you’re grappling with it! What’s worse is that it seems to only magnetise all the other ‘invisible’ deficits you may have, from vision loss to heightened pain levels – definitely unwelcome guests on any occasion!

So, if you know of another grappling with fatigue, perhaps think of how much more effort it is now with the covid19 cloud circling too. Consider what you can do (or not do) to lessen the weight that they’re carrying.