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With Chronic Illness, I'm Not 'Just Tired'

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I am exhausted.

I live with multiple chronic illnesses, and thanks to that daily onslaught of ill health, I also have chronic fatigue. It’s no exaggeration when I tell you that I feel tired all the time. All. The. Time. I don’t say such a thing too often, because lord Bowie in heaven knows how boring it is to hear people complain about how tired they are. In the scale of dull conversational topics, it comes directly above, “Did I tell you about that dream I had last night?”

At least once a day someone around me with perfect health will complain about how tired they are. Most of the time I can smile politely and internally raise my eyebrows, sometimes if I’m feeling particularly pleasant I might even enquire as to why. Essentially when I do, though, I’m left feeling less understood than I do when my Scottish accent and I call an automated phone service. The answer I get will inevitably be something along the lines of “I stayed up late watching TV,” “I couldn’t sleep for my partner snoring,” or “I was making rampant love to you all night, how have you forgotten that?” So. What.

It’s not that I’m claiming only those of us with chronic illness are permitted to complain about exhaustion; obviously that’s not the case. Life isn’t a competition and there is certainly no winner in the tiredness top-trumps. But what can be very frustrating and (most likely unintentionally) insensitive, is when Joe Bloggs takes the “me too!” approach to someone with a chronic condition expressing their feelings of exhaustion. The simple fact of the matter is, it’s not the same.

Not having gotten your full eight hours uninterrupted sleep because someone was snoring, or you were making rampant love to someone for three minutes, isn’t the same as chronic fatigue.

Exhaustion for those of us with chronic illness isn’t just a feeling of not having had ample rest. It’s an ache. A constant and relentless trudge through the day. Legs and arms of lead, walking through each day in a daze, brain-fog, confusion, trouble catching our breath, difficulty walking more than a few steps, simple tasks becoming mammoth feats of super-human strength. Everything is harder. For much longer than three minutes. Talking is hard. Maintaining concentration and expelling coherent sentences is like learning Japanese with ear plugs in.

All of this can sound overly dramatic when we attempt to describe it to those on the outside. They may nod in agreement or employ the age-old sympathetic head tilt, but they will most likely doubt the severity of it. Which is frustrating, but at the same time only to be expected. Those without firsthand experience will fall to the nearest similar situation they have to base it on; in these cases that will be that morning they woke up at 5 a.m. instead of 6, and we will kindly employ the sympathetic head tilt, all the while internally screaming.

Obviously, it stands to reason that with lack of sleep and continuous exhaustion comes fluctuations in our mood. We may become irritable, quick to argue or even cry, short-tempered, even anxious and depressed. Lack of rest means our already weary bodies are not getting any time to recover from the stresses and trials of the day. This overlaps into the next day, and the next, and by the end of the week we will feel fit for our coffin. When we are exhausted even on our days free from work or stress, it can be all the more infuriating; we will feel we are missing out. Napping is great, don’t even dare get me wrong there, but I often find myself avoiding it because there is so much more I feel I should or would prefer to be doing. Inevitably it only serves to leave me watching a film with my eyes barely open and falling asleep 10 minutes in at approximately 7 p.m.

Extreme exhaustion as an aside of chronic illness is another way in which we can begin to feel isolated. Avoiding activities through tiredness or having to climb the stairs to Slumber Town early and alone each night can put a strain on the closest of relationships. We naturally can’t expect those around us to follow suit in hibernating under the duvet as soon as our feet cross the threshold. Our friends and partners will also feel alone when we are exhausted. They are often only getting a little bit of us; the rest ironically needs to be awoken after extensive rest. When we are too tired to chat, eat together, enjoy activities together, or just “be” together, it can cause a tear that takes an abundance of work to mend.

If, like me, you are incredibly lucky, you will have people around you who understand that exhaustion is real and debilitating. They wont judge or presume to understand; they will just listen and ask if and how they can help. The truth is, there really is little that can be done in living with chronic fatigue, but it’s important we maintain an open dialogue with those around us on how we are feeling and how things are affecting us. Poor physical health often = poor mental health, so sharing and keeping the lines of communication open with those you love is vital in helping to keep us feeling included, loved, and sane, when so often we feel anything but.

Originally published: June 4, 2018
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