What’s the Worst Then…?
When I think about the effects of my various diagnoses, just to try to determine which one’s the hardest to deal with, it’s not the pain, the stiffness, the nausea or a complete sore body, it’s the everlasting fatigue and lack of energy that's the winner.
If you are healthy it can be hard to imagine yourself being exhausted all the time and that even the smallest thing, like taking a shower or making dinner, feels like a whole project. And after each “project” you need to rest or in worst case; take a nap.
I have the fortune of still being able to work despite my conditions, but I have to get up at least one to two hours earlier each morning to have that extra time it takes to:
1. Get out of bed (an acrobatic but not so graceful adventure every morning btw).
2. Get dressed and in other ways get ready, in other words a lot of time consuming activities due to my aching body, the stiffness of every joint and the fact that my hands and fingers don’t work at all that early in the morning (try to put your hair up, snap buttons or tie shoes with aching, rigid and crooked fingers. Just making a cup of coffee and a sandwich takes a ridiculous amount of time…. (not to mention the ridiculous amount of swear words...lol)
3. And finally; Get a quick rest before managing the short walk to work. But despite taking it easy, I often feel dizzy and nauseous during the walk, so when I’ve arrived at work, guess what...yep, I need to rest a bit again.
I’m keeping up fine during the day by using every one of my spoons (i.e. by slowly lowering my energy level to zero). So I spend my evenings mostly in the TV-couch or by my PC, but on a good day I'm able to save a spoon or two for a nice evening walk or some easy work out. Yay...
I know that the daily challenges of living with chronic illness varies a lot from person to person, but this is pretty much what everyday life is for me…
If you are healthy it can be hard to imagine yourself being exhausted all the time and that even the smallest thing, like taking a shower or making dinner, feels like a whole project. And after each “project” you need to rest or in worst case; take a nap.
I have the fortune of still being able to work despite my conditions, but I have to get up at least one to two hours earlier each morning to have that extra time it takes to:
1. Get out of bed (an acrobatic but not so graceful adventure every morning btw).
2. Get dressed and in other ways get ready, in other words a lot of time consuming activities due to my aching body, the stiffness of every joint and the fact that my hands and fingers don’t work at all that early in the morning (try to put your hair up, snap buttons or tie shoes with aching, rigid and crooked fingers. Just making a cup of coffee and a sandwich takes a ridiculous amount of time…. (not to mention the ridiculous amount of swear words...lol)
3. And finally; Get a quick rest before managing the short walk to work. But despite taking it easy, I often feel dizzy and nauseous during the walk, so when I’ve arrived at work, guess what...yep, I need to rest a bit again.
I’m keeping up fine during the day by using every one of my spoons (i.e. by slowly lowering my energy level to zero). So I spend my evenings mostly in the TV-couch or by my PC, but on a good day I'm able to save a spoon or two for a nice evening walk or some easy work out. Yay...
I know that the daily challenges of living with chronic illness varies a lot from person to person, but this is pretty much what everyday life is for me…
Immensely tiring, persistently painful and mind-numbingly boring
xoxo
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