"Where there is creativity, there is hope." ~ Donna Karan

I just want to sail away to a tropical island

by - Thursday, July 19, 2012

Two months ago I mentioned on my facebook page that I wish I could just sail away to a tropical island.

Working one short shift a week is taking its toll on everything. My social life is in the toilet, I'm hardly able to do any craft, blogging has become more of a chore and I find myself stuck in a deep, dark, ditch of depression once more.

I've survived three months of shifts so far, and I fear I won't be able to cope much longer. I hardly have good days anymore. Post exertional malaise has been most unmerciful. Some days all I can do is breathe. Between shifts, I spend my time trying to recover for my next shift. After some shifts I feel so horribly hideous, I can barely function. Things that need to get done are falling by the wayside. I am barely surviving. I'm living on struggle street. It seems I've bought a house there.

Getting back to work has always been a goal, and I'm proud of myself for pushing through and working, when all I feel like doing is curling up in a ball in a corner. Serving stressed out shoppers isn't ideal when the brain fog is thick and fatigue has you feeling fragile. Somehow though, I'm doing it.

Don't get me wrong, I am thankful for this job, and I want to work. I need to work. I like working, and I like feeling useful again. It's nice to have a sense of achievement outside of home. I like living the life of the healthy me and pretending to be a functional adult, even if it is only for a few hours, I just don't like the consequences it causes. I just wish I didn't have to sacrifice so much for it and suffer because of it.

When I get home from work, the recovery begins. I go to bed dreading waking up in the morning because I don't want to spend the next four or five days feeling like death and wanting to die. I rest and try to regain some strength for my next shift. Barely recovered, I work my next shift, and the process begins again. Some weeks are worse than others, but lately I've been running virtually on empty. I exercise everyday to try and get some strength back and help reduce pain, but most days that's about all I seem to be able to do.

My life just seems to consist of exercise, surviving work and trying to overcome post exertional malaise. I don't have energy for much else, and if I do, I have to save it for my next shift.

Mr Fatigue Man thought it would be best for my health and emotional wellbeing to go back to work, to try to bring back some focus to my week. I wrote about the tidal wave of emotions that engulfed me as I made my decision to go back to work for myself and to also avoid doctors hassling me about my lack of living. I was worried how I would cope with work, and scared of the million sacrifices that I would have to make.

"In order to work this one measly shift a week, and keep up with it, I know I'm going to have to make sacrifices. Scarifies I don't want to make. I don't want to give up on some of the dreams I wanted to work towards this year and I still want some energy to craft. I don't want to sacrifice spending time with family on the weekend because I need to reserve energy for work. I don't want to stop my short shopping trips. I don't want to discard the things that make life worth living for me right now. But I know I have to."

Now that I'm back at work it has become my only focus. My whole life is now based around doing what I can to help myself survive another shift and make it through another week  feeling like eating elephant poo would be better than feeling so indescribably terrible. I have to plan my week so that I can cope. I have to reject social invitations, I've had to stop my occasional stroll around the shops - all because I'm feeling unwell from my last shift and need to save what little energy I have left for my next shift.

I used to be able to manage work plus other things much better than I am now. I don't understand why the fatigue has suddenly become so unbearable these last two years, and I'm tired of doctors telling me that I'll get better if I just exercise more and go back to work. I am doing those things, and I am still tired. I am still sore and I am still struggling. I'm over douche bag doctors who don't "get" it and never will. I am tired of doctors pressuring me to return to work or study. I am tired of having an illness that is apparently unacceptable.

Chronic fatigue is a monster. I wish doctors understood just how hard the illness is to deal with every single day, and how much more difficult it has become since working.

I just want to sail away from it all.

I want to stop swimming against the tide and just sail away, letting my worries wash away with the waves. I want to sail away to a tropical island and leave behind the disappointments of unattemped to do lists; to escape the pressure and expectation to perform as a healthy, well functioning adult. I want to leave behind the bitter disappointment of broken dreams. I want to sail away and forget about frustrating medical "professionals". Forget that I'm sick, even if only for a few minutes.

I just need some time on a tropical island, where it doesn't matter if things don't get done. Where my doctors won't be expecting more than what I feel well enough to do. Where I can rest and be allowed to listen to my body. Where I can stop running myself into the ground. I just need a break from reality for awhile. I need to escape for a bit where I can gain a new perspective, soak up the beauty of new surroundings, bask in the glory of sunsets on beautiful beaches, and let fresh hope flourish with the sunrise.

But for now, this picture shall have to suffice.

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