When you crash, you crash. The fatigue comes down on you like some falling rocks. Trapping you under.
It’s funny it’s hard to imagine unless you experience it. I am lucky to have a mum who has experienced a mystery fatigue for decades, who is no stranger to the end of week crash that feels like the flu. As to most people I must appear simply lazy. I can imagine it’s hard to imagine why on my worse days even brushing my teeth exhausts me. In the early days it was just activities, I could withstand about 6 hours with people before my energy dragged, sometimes if I’m lucky whole days. Now I feel the familiar, warm achey sickly feeling, sore throat and headache after about 4 and that’s on my good days.
And I can understand to tired people they must think surely a nap or more sleep will help. While being sleep deprived does not make matters worse. I wish it was that simple.
Because once you are home and you can take the happy healthy mask off you are left with the reality of what this over exertion will now do to you for the next 24 hours to a week.
And you can try to sleep but you ache and are in too much pain to simply sleep. And now you’re panicking about how you will cope if you can’t sleep this off.
Plus now you have to make yourself food before you sleep so your blood sugar doesn’t go low, prepare for this flare up and how it will affect your sleep. Try and take pain killers even though they come with a list of side effects. And then maybe if you are lucky, you will sleep.
Then you will wake up, feeling like a car has ran over you, you’ll walk to get your food feeling your 19 year old bones crunch like your 80. And immediately go back to bed if you’re lucky, if you’re not you have a full day of activities a head of you in which to survive through. Drag yourself through it when your whole body just feels limp and lifeless. And to even do this you will have to be less productive, do less things, cancel plans, speak to less people, you might even appear rude as you will feel completely nothing. Too exhausted to even feel feelings.
And to other people they will see you as rude, lazy. When really you and your body are working harder than the average person to just survive and make it through the day.
And there is no secret formula no way of curing it.
It’s one of the things they often can’t cure or even treat it.
You learn to deal with it, you make your peace with what feels like the rocks on your back.
You make peace that you are trapped with it.
At first you think of it as your enemy constantly holding you back, the reason why your loved ones think you don’t care about them. As you haven’t texted them back.
But then you learn that the only way to survive this is to make friends with it. And it’s hard. You will learn to pace your activity’s and rest and then do an activity, then rest. Constantly follow the pattern of resting a little, doing a little bit of activity, then resting a little, striking the balance between keeping moving and rest. But even then people will still see you as lazy, or even giving in to your illness. You can do no right in the aspect.
But I think it feels better to put your health first than other peoples opinion. Even though it will sting a lot at first, evidently you kind of get used to it it becomes background noise. A bit like your symptom baseline.
Fatigue will always be there following me around. I think a lot of the time that when I hope they find out what is wrong with me, that the fatigue will go away. Maybe the meds will make it go away.
Maybe, maybe not.
But for now it’s here, better to be a friend than an enemy or so they say
Thanks
Amy x
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