Lupus fatigue......hmmm where to start! When we say we are tired we all have a level of understanding of this. It is that feeling that you get at the end of a workout, hard day at work or when you wake up after a night out. We all understand what yawn means and we all have those days when our pj's a more comfortable than anything else. However lupus fatigue, or in fact any chronic illness fatigue, is something completely different and as I am fed up with people simply believing I am slightly tired I felt it was time to try and explain what it's like.
I have broken it down to 3 different types of fatigue that I experience, I am pretty sure that they cannot be too far off some of yours either. So here they are....would love to know if you would add on any to this list!
The everyday, bog standard, I need a nap fatigue
This is the norm, day after day, I constantly need to curl up and have a nap. To liken it to a feeling I would say it relates closely to the feeling of exhaustion you get when you have a flu. The kind of tiredness that is constant somewhere in the background of your mind, but doesn't necessarily stop you from doing things in your day to day.
Mine starts as soon as I wake up, or rather I never seem to actually wake up any more, rather I live in a half zombie land state...neither awake nor asleep. When I wake I do not have that feeling of refreshment, like I have had a really good quality of sleep. Rather, for me, I feel drained and my head aches ever so slightly...which never seems to fade. I actually can't remember what it feels like to wake up refreshed which I find sad sometimes. This feeling of zombie like, mushy brain seems to stay with me all day, gradually getting more intense as the day goes on....bringing with it brain fog and a slight loss of coordination. See the difference between being tired and having lupus fatigue? Want to know the best bit though? Lupus fatigue means that even when you need to sleep it often finds ways to keep you awake, pain, nausea, side effects from medications...oh what a b***h she can be!
The I have over done it and now feel like I am a cast member of The Walking Dead
Zombies are the coolest aren't they? I should know as I am one often enough. The over doing it fatigue is one of the easiest types to control as I seem to know how much rest I will need to get me back on an even keel....but here is the difference between me and you......are you ready?
We have all over done it, maybe stayed up too late, not got enough sleep, spent days agonising over work and so on. Jet lag is a prime example of overdoing it...you get home and feel so exhausted you sleep for 12, 14, 16 hours, only forcing yourself to wake up because you feel you have too! This is how I feel every single weekend, in fact I am pretty sure weekends no longer exist...well they do but are some kind of stuper. I get this form of fatigue after any long day at work, any stressful day, any day where I have done too much exercise, stayed up too late, had broken sleep and the list goes on. Out of every week I would say approximately 3 of these days will be spent in this stuper state. So that is 3 days written off every week.
The flare up, I cannot understand what you are saying, brain is not responding fatigue
Ohhh this is the hardest and most soul destroying type of fatigue because however hard you try, you simply cannot control it! I have tried I can tell you, but the problem is, when you are suffering from a flare up fatigue your brain simply cannot function and you become numb to almost any amount of information. What can I liken this too? Well the only thing I can think of that comes close is waking up from a surgery. It is that sedated exhaustion where you are pretty unsure as to where you are, who you are and what on earth you are meant to be doing. Well this is pretty close to Lupus fatigue.
Now you could say, thankfully this only happens during a flare up...but what about if you have been in a flare up for months...well then this begins to infiltrate every night! Most of my nights are spent in this complete and utter daze where communicating becomes to hard to do. I even caught myself staring at my own feet the other day for 20 minutes...yes 20 minutes of watching my feet because that is all I had the energy for. Weird but that is how it can hit you sometimes. When I feel flare exhaustion I also need the most help from others. This can be with small tasks such as getting dressed all the way through to making sure I get home from work ok because i will get lost if I am that fatigued. If I am not in work then all I am capable of is sitting and that is about as far as it goes.
So too everyone out there.If I cancel plans because I am tired please don't take it personally, my tired is so very different!
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