Tuesday, 3 September 2013

autoimmunity - part 4 - fatigue

The ongoing mystery as to how my body works was back to its old tricks this past weekend with a huge flare-up consisting mainly of swelling in my wrists, fingers and knees and more debilitating, severe fatigue.

Lying in bed with the sensation that someone had replaced my skin with those lead vests that you wear to protect your organs during x-rays, I had a lot of time to think about fatigue, energy, sleepiness and wakefulness and to try to remember to be grateful for my good days.

Now that I'm feeling a little better I thought I'd post a bit about it. 

I didn't know what fatigue even was until my sickness.  Sure I had been tired, lazy, wiped-out, exhausted, drowsy, hungover, floored, .lethargic and loads of other versions of tired but never fatigued.  I didn't realise that such a terrifying state of lack of energy even existed. You can be wide awake in your mind but your body, no matter how hard you try, is resisting any form of movement in an active and opposite way.  It's as if gravity suddenly has an 80% stronger pull on you or the ground/chair/bed have become magnetic and your bones and muscles are made up of iron. Then on top of  that there is a strange and foreign energy running up and down inside of your body at a frantic rate keeping your muscles, bones and tendons from doing as their told.

As in my case it can come on slowly, with warning signs like headaches and joint pain and swelling, or all of a sudden, regardless of how much you've slept and without warning. Then when it decides to go it can just vanish, leaving behind confusion, relief and the subtle residue of fear.

If you had seen me yesterday morning at around 8am you would have been shocked at the states was in. I was up, yes, because I had to look after Sera, but moving as slowly as a sloth (who I'm sure knows what fatigue means perfectly). 

It took me over two full minutes to get down the staircase.  If I had to stand I needed to use both hands, placed strategically and pull myself up from a seat. Showering was out of the question because of that crazy energy running around me and my low blood pressure so I just had a coffee and stayed perfectly still unless I had to move. I put on cartoons for the kiddie and didn't feel guilty at all (well, a little bit guilty, but that's how I always am).  When a friend popped by at 9:30 I had to tell her that I couldn't have a coffee with her (after finally making it to answer the door). Then, all of a sudden at 10:30 it was gone! I was better.

And this morning when I woke up I felt fine as well.

I spend a lot of energy trying to find answers to what triggers the fatigue and flare ups and I do my best to try to avoid them, but I have also spent quite a bit of time trying to learn how to accept them and let to of the stress my mind causes mean top of my bad days... I find that when my body is at its very worst, my mind goes off and worries about the future, feels angry that I have this challenge in my life and feels like a failure for not having 'resolved' it by now (though I have been told on many occasions that there is no cure, only treatment). Since I can't control the sickness I can at least try to control how I feel about it and that may make things a little better.

I am grateful today to have energy and vitality to play with my daughter, see a friend and cook a healthy meal for my family tonight. I am grateful to be working on my memory quilt, to be able to continue to do my crafting projects and to be able to work on my short film.  I am grateful that my recent x-rays have resulted in no deterioration to my finger, wrist, ankle or feet joints. 

I am also grateful to be able to be writing this post for you today. I have spent a lot of the past 13 years hiding my sickness from the people around me.  Of course, I don't want to burden anyone with my problems, we all have them, and I'm not throwing myself a pity party, I'm the first to say how lucky I am and have been. But I still think the reason I don't normally share is part of my life with anyone is a combination of shame, fear, denial and anger.  I want everyone to perceive me as strong and the sickness makes me feel weak. I am afraid of being judged, but more so of what the significance of my sickness means to my future and the people around me. I am in denial of the disease (hey! I've already made a step in the right direction, calling it a disease instead of a sickness or illness) and I figure if no one knows that I am struggling with it, it will go away, or won't be true.  And I'm angry.... So so so angry at times. 

Perhaps I can find strength instead by learning how to accept my weaknesses. Perhaps I can be brave while facing my fears. Perhaps I can learn to accept this disease and in doing so live with it in harmony and perhaps, instead of anger I can learn about compassion and gratitude from all of this.  Surely, at the end of this journey I will be changed because of it, perhaps it is my choice as to how.

My joints are still swollen today, and I take that as one of the warning signs, so I'm going easy on myself in the next few days. I'm hoping that the fatigue won't return again for some time. Wish me luck!

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