I know I’ve often said fatigue is the hardest thing to explain. I know from speaking with others that Chronic Fatigue is incredibly misunderstood by those that have never felt its effects. The nearest most people can compare it too is feeling tired, and that’s like comparing a whisper to a shout.
I’m deliberately trying to write this now whilst I’m in it, even though just holding my phone and touching the keypad is stupidly hard work. I feel fatigue every day, it never leaves me, but two or three days a week it overcomes all and I am capable of nothing but sleep.
I’m just coming through a fatigue flare, I slept around twenty hours on Sunday, eighteen yesterday and about twelve hours last night. I’ve been awake since 11.30am this morning, though I use the word awake loosely, zombies have more energy! I’ve literally fumbled my way from the bed to the sofa, and here I’ve stayed. I could list a few easy metaphors, walking through water, seeing through fog, swimming through quicksand but none quite capture the completeness of fatigue.
It’s as if every limb of your body is filled with lead, your thinking is slow and clumsy, you fumble and drop things, and you seem to have suddenly lost the arcane magic that allowed you to coordinate limbs, judge distance and weight. Covering the ten feet from the sofa to the kitchen seems a marathon, and I drop onto my kitchen stool to rest before attempting to lift my arm and switch on the kettle.
I suppose the nearest obvious experience to understanding fatigue is the flu, but please know I mean Influenza, not your last bad cold. Flu is actually an apt comparison, as actually very similar processes are being undertaken by the body.
Our immune systems are fabulous and complex, and most of the time they are incredibly efficient. So with an enemy to defeat, for example the flu virus, the immune system does two things. One – attacks the virus, and two – shuts down all non essential systems so all energy is diverted to repelling the enemy. Simple and to the virus, deadly.
However with RA our immune systems are unfortunately badly confused, and they daily try to ‘repel boarders’ that are actually our own selves. So the shutting down or fatigue, is constantly being ordered to allow us to heal – except its not needed.
RA is of course just one potential cause of my fatigue, I also have Fibromyalgia, and my GP believes Chronic Fatigue as a separate diagnosis. I’m kind of past the point of minding at the label, I’d just like a cure please.
Interestingly I’ve today received a letter from the Centre for Fatigue Services at the Royal National Hospital for Rheumatic Diseases in Bath. I’ve an appointment in the next few weeks. Both my GP and I are quite intrigued, she has no idea exactly what they offer or do as I’m the first patient she’s managed to get through their screening process (Nine vials of blood for tests).
I’ll certainly update you on the what and the how after I’ve been to see them, and if I need a reminder of how fatigue feels on bad days I can refer back here 😉