I'm tired. Shattered. Worn Out. Constantly. Permanently. It doesn't matter what time I go to bed. It doesn't matter what time I get up. Even if I have a little nap. I'm tired. I am more than tired, much more, I have fatigue.
Fatigue plays a huge part in MS; in fact almost everyone who has Multiple Sclerosis (MS) also has Fatigue. Fatigue certainly plays a role in the MS of a large number of those living with the condition (according to the National Multiple Sclerosis Society (NMSS), around 80% of those diagnosed with the condition will experience fatigue at some point during the course of the disease). Fatigue certainly plays a significant and crippling part in my MS.
Fatigue is an unimaginable exhaustion; but even the word exhaustion really is quite inadequate to explain how tired I actually feel. It’s a debilitating symptom, a massively debilitating symptom of the disease that is not remedied at all by resting or by a little nap or even better quality of sleep. And it isn't helped by the fact that the exact cause of MS-related fatigue remains unknown.
Some times I have a nap from which I can awaken dazed and confused and equally as tired as I was before I went to sleep. Or I awaken not knowing if it is morning or evening, what day of the week it is, if I have been asleep for an hour or 24 hours. And then I feel lazy.
I am not lazy. People who know me, who have known me a long time will corroborate that I really am not lazy. But that is how I feel. I don't even have the energy some days to do the things that I enjoy doing, to do the things that I really really want to do. I hate those days where my 'get up and go' 'got up and went'.
Fatigue is a 'hidden symptom' of MS. It can be hard to understand. It is difficult to explain. It is difficult to understand that MS fatigue is very different to the tiredness and exhaustion that people experience as part of everyday life.
Like everything with MS, the causes of fatigue can be complex. Sometimes it can be linked to medication, sometimes to dehydration, sometimes to depression or anxiety. So if you are feeling the effects of fatigue try and be a little bit kinder to yourself, and just try to accept that this is a cruel aspect of this cruel disease.