How do you explain fatigue to someone who has never dealt with a chronic illness?
When you first tell someone you have a chronic illness its difficult to explain the extent of how fatigue affects you. Its not just feeling tired. I find that most people get the side of fatigue that prevents you from doing certain physical activities, such as cycling, skiing, playing football, martial arts, etc. But what is more difficult for non chronic illness sufferers to understand, or rather for me to explain clearly, is how it affects us in our day to day life, such as not only can I not play the sports I used to play but that some days walking my dogs, showering, climbing the stairs, or even preparing my food is way beyond what I can manage. But again these are purely physical affects of fatigue, its the mental side of fatigue that is beyond most peoples comprehension or my power of explanation! So, frequently I don’t even bother trying to explain as you don’t want people to think you’re whining again or that its all you ever talk about, but how can you complain no-one understands if you don’t even try to explain. So here goes! Most people don’t realise that it takes energy to think, to speak, to coordinate your limbs when you walk or try to write or type as these are all things most people do automatically without having to think about it all. The more fatigue I feel the harder these things become. When fatigue really kicks in for me I often start to slur when I speak, stagger as I walk which whilst is amusing at times as I often appear to be drunk its also extremely frustrating to not be able to communicate or move as clearly or as quickly as you’d like. I’m extremely conscious of how this often comes across, I can feel how slow I am mentally, especially compared to how I was before, and assume this is picked up by others, I’m frequently assured its not noticeable but it doesn’t stop me feeling so self-conscious! This in turn or at least for me leads me to be withdrawn and quiet in social situations, so when I’m feeling at my worst I’ll often avoid social situations, which in turn can make me feel quite isolated. Even writing this now with plenty of time to think I still find it difficult to articulate how deeply fatigue affects me!
For me on my worst days I can barely leave my bed, for most people I know this is difficult for them to comprehend as they obviously never see me on my worst days and they don’t see the struggle it is to perform the most basic tasks.
The more fatigued I become the more irritable, short tempered and bitchy I become, this affects my mental health drastically and often leads to depression, anxiety and a definite lack of self worth. When you can’t do any of the fun things you used to do, when you can’t socialise comfortably, when working becomes too much you really start to lose any sense of who you are. Most days I don’t even recognise the person I am now in comparison to who I was before! Fun loving, sporty, party animal, where’d she go?! And who the health is this boring bitch that took her place!!!
Learning to manage fatigue levels has been one of the hardest parts of adapting to my illness, accepting that I can no longer do certain things, that I have to learn to say no to people or events as its impossible for me to do everything I could before and that I have to pace myself if I want to be able to do anything at all. The consequences of ignoring my body when it says enough are high, my illness flares and can take weeks or even months to return to anywhere near what it was before, not to mention the damage that is done to your body during the flare and the fact that some of this damage may not be repairable. The downside of saying no to people so frequently is that after a while they stop asking. Which is normal as who wants to keep asking someone out who rarely commits to anything! It does however add to the vicious circle of isolation and feelings of a lack of self worth.
I don’t have any magic answers as to how to overcome the loneliness fatigue can cause but I can say that being patient with yourself, learning how to manage your fatigue to avoid huge highs and lows, not overdoing it on your good days (and yes I know this is extremely difficult and some times an event may be worth the pain and fatigue), all help keep me on a little more of an even keel!
Feel free to share any hints or tips you may have for how you manage your fatigue and the isolation. For me a little yoga (when I can manage it), a gentle dog walk, meditating and reading as well as laying in my hammock when the gardens not covered in snow and dog cuddles when it is, all these things help me feel a little brighter and more balanced.