First of all, please accept my apology for the slight clickbait in this post’s title: today I will be discussing fatigue which is very different to tiredness. Allow me to explain.
Tiredness is the body’s natural response to having been active. It is the feeling we all know at the end of a long journey or a hectic day at work or school. Tiredness is a sign that it’s time to recharge one’s metaphorical battery by sleeping , having a relaxing bath or lounging on the sofa with a movie and something tasty to replenish the energy that has been depleted. Tiredness is easily fixed with adequate rest.
Fatigue is often confused with tiredness because the symptoms can appear very similar but it differs in several ways- fatigue is not solved by eating healthily, taking regular exercise and sleeping eight hours a night. Fatigue is waking after sleeping a full night and feeling like you’ve run several marathons in that time.. Fatigue is like walking through a heavy fog: the body is slow and sluggish and the senses are dulled. Having spoken to friends who are sufferers of conditions such as fibromyalgia and ME/CFS I can fully relate to their descriptions of “brain fog”: a condition where the fatigue has become so overwhelming that simple thoughts and tasks are impossible. My own experiences of this never get less frustrating. I have lost count of the number of times that attempting a simple task has left me so frustrated that I’ve ended up in tears on the floor, for example: last week I awoke feeling surprisingly well and decided to take a stroll while doing my errand for the day of dropping my repeat prescription slip into the pharmacy located a few metres from my front door. However, my attempt at getting dressed was so disastrous that Mr. Q. ended up comforting me, tucking me back into bed and going to the pharmacy for me. The task that had defeated me was putting on trousers: for some reason my brain simply could not fathom how to achieve this simple task and it felt like the end of the world in that moment. At this point in the post I feel it appropriate to point out that I have already taken well over a fortnight to write this much: I used to be able to write thousands of words without thinking but now it drains me to the point of devastation to knock out a few sentences. i wrote most of this post three years ago and have repeatedly opened the draft to finish and publish it before realising that I had typed nonsense. As frustrating as this is I take comfort in the following analogy that I use to explain my fatigue and thank my brain for functioning as well as it does.
Why I’m Fatigued
Less than a year after my stroke I saw a C.T. image of my brain and I didn’t need any training in neuroscience or radiography to interpret the image of a brain which has one hemisphere almost completely black while the other was represented in white and shades of grey. From this I can surmise that roughly half of my brain is useless scar tissue, leaving the healthy half to carry out its own tasks as well as those formerly assigned to the damaged tissue. Imagine how exhausted you would be if you had to carry out all the tasks of your own job and personal life as well as those of a colleague. Imagine you had to do all this with zero additional time, pay or resources. You would be far beyond tiredness within a very short time. Now imagine you had to do that for the rest of your life without a break. My brain has been doing the equivalent of this for over a quarter century now so I can’t be too annoyed with it and gladly give it as much rest as I can, even though it frustrates me to spend so much of my life snoozing or just lying in bed. I have to constantly remind myself that I’m not being lazy: I’m giving my brain and body the care it needs to allow me to have those days when I can function despite it all.
Coping With Fatigue
I would love little more than to say that I have a solution to the problem of crushing fatigue but I do not. What I do have, however, is twenty-three years’ experience in living with it, so here are my coping strategies:
Managing Expectations
- Over the years I have learned my limits the hard way: by bouncing off them and ending up sobbing and unable to function for days. For example, I know that a date night involving a movie with Mr. Q. is possible only with planning. I will spend the day in bed beforehand, only emerging when it’s time to make myself pretty for our night out. While we would ideally go out for dinner before heading to the cinema I know that this is often impossible as dinner will render me so exhausted as to be unable to process a movie. I have learned that an afternoon or early evening screening will work better for me than something that requires me to be attentive after 2000z. I’ve learned to accept that the kinds of days I used to enjoy are no longer within my capabilities, e.g., I couldn’t possibly spend an hour on buses to go to Glasgow, spend the day shopping and then have dinner before going to a gig where I’d spend the night dancing before catching the last train home. Which leads me to:
Scheduling
Because I know my limits from over two decades of bouncing off them, I am able to plan my life in such a way as to pack in as much as possible without killing myself in the process. With my previous example of a day I would have once enjoyed in Glasgow I will explain how I can still manage to do all of those fun things. The main thing for me is allowing myself recovery time between tiring events. If I plan a day out with a friend I’ll generally clear my diary for the rest of the week as experience has taught me that attempting to cram too much into too short a time period is a recipe for ending up too exhausted to get out of bed. If I have plans for a gig, party, show or other fun outing I will generally rest as much as possible in the days leading up to it in the hopes of saving up some energy. While this is in no way guaranteed to work, I feel it is the best chance I have of being well for the fun times. Another thing I do in these situations is use my wheelchair if there is likely to be a lot of standing or walking involved in the event (this is essential for gigs. Much as I’d love to still be in the mosh pit throwing myself about like I used to, even standing on the sidelines for the evening is beyond me. As most venues lack suitable seating it is incredibly useful for me to have brought my own. It’s great because I can have a dance if I feel like it and am guaranteed a place to take the weight off my feet when I get tired or the music gets boring.). If I do go to Glasgow to meet a friend I will generally plan our day with adequate rest periods, for example, we will usually have lunch or tea first to recover from the journey and catch up before heading to the shops. Whenever possible I will take my electric wheelchair in order to easily cover the distances involved in a city shopping trip, but if I can’t do this for weather or logistical reasons I make full use of the public transport options available to me. While I might not be able to walk very far I can cover a considerably larger distance by utilising the buses, underground trains or taxis. Quite often I will walk somewhere then use a bus or taxi to get back to the bus or train I take out of the city. This prevents me being limited to the relatively small area around the bus and train stations I can comfortably navigate on foot