I've been back at work for four months now, doing one three hour shift a week. I am still surviving, just. Hanging onto the very end of a tattered rope, I am.
Don't get me wrong, I like being back at work, and I know I'm blessed to still have a job - I am thankful for it everyday, but working with chronic illness, especially chronic fatigue syndrome, is a struggle. It's a struggle that my doctors don't see, and when I try to explain it, they fail to understand.
"Work will be good for you, it will give you a focus. It will help you feel better. You can't just keep staying at home doing nothing, you've got to do something."
They cannot comprehend how hard it is to work in retail while feeling fatigued and foggy brained. It's challenging even for the healthy. They fail to recognise just how demanding my job is - it's not just standing and scanning purchases. There is a whole lot of multitasking required. I process purchases, sort out returns, answer the phones, cut ribbon, laminate sale signs, answer stupid questions from customers, and somehow manage to get returned curtains and quilts back into their original packaging. And as if that isn't enough for my overwhelmed brain, I have to count and close down the register (sometimes two of them) at closing time.
It's no wonder I require a ridiculous amount of recovery time after my shift. Some weeks are better than others and I am able to manage a few extra activities, but generally, most weeks are a struggle. I spend them recovering from my shift, feeling like death warmed up, resting and trying to restore some energy for my next shift. Sometimes, I don't recover enough, then I have to work another shift, and am unable to do a thing the next week. Surviving work has become my entire life.
During my shift I keep looking at the clock, wishing the time away, longing for bed, and dreading the awful post exertional malaise that will follow in the days to come. Some shifts I just want to sit down and cry because I just want the customers to stop coming and the phones to stop ringing. Last week, I nearly burst into tears in front of my managers because all the people and noise were just too much for me to be able to concentrate on what I had to do.
While work has been good for me in some ways, I can't say I'm feeling any better. Some weeks I don't have any good days at all. Zip. Nada. Zilch. It was only two weeks ago that I had one of these weeks. I felt so ill that I just wanted to die. Things have gotten so bad sometimes, that I find myself not wanting to wake up in the morning - and that's scary.
Working hasn't brought me the happiness that I thought it would. It's funny, because my goal has always been to go back to work, even if only for a few hours. You would think I'd be happy, but I'm not. I appear to be, but deep down inside, I'm miserable. If anything, I think work has made me a bit more depressed. The fact that I am struggling so much has reinforced the fact that I am not better yet, and this frustrates me, because I am doing everything I can to try and get myself better.
Working isn't making me better. People think that I must be feeling better because I'm back at work, but they aren't aware of the aftermath - post exertional malaise. They don't see how much it punishes me, and how sad I am because of what I have to sacrifice.
Someone recently noticed that I looked sad. I didn't mean to look sad, but I was just feeling really ill because of fatigue. I fobbed it off as general tiredness, and sported a smile, lightening fast. But the truth is, I am sad. Really, really sad. You would be sad too, if you felt how I do everyday.
Because of work, I am not able to do as much of the things that bring me joy and make life worth living. Some weeks I am unable to craft, and I'm lucky if I can bake once or twice a month. Things that need to get done, just aren't getting done. My bedroom is a mess, my craft studio is still unorganised, and my dreams are falling further and further from my reach. Friends are falling by the wayside, and my social life is in the toilet. It's nonexistent. I can't even remember the last time I hung out with friends - it has been that long. It's tough. Very tough.
How is this better? Why doctors think this is a better way of life is beyond me, and it frustrates me that they don't care if the rest of the areas in my life are suffering. I want to work, but I also want to be able to hang out with friends occasionally, and actually enjoy my life. I'd like to be able to blog a bit more too.
I regularly feel guilty about my unhappiness because I think that I shouldn't be this unhappy, that I have no right to feel this unhappy. I have so much to be thankful for, and yet I'm spending Saturday nights crying into a bowl of 2-minute noodles (the sick persons choice of meal), watching re-runs of I Will Survive, feeling sorry for myself. People keep telling me to focus on what I am doing (working), and how far I've come, and I do, but all I seem to really focus on is what I can't do because it's rubbed in my face every single frickin day.
I guess it's human to feel this way. I don't think I would be considered human if I didn't! But I also know that there are many people that can't work, and would sacrifice everything to be in my shoes right now. So I tell myself to shut-up and accept the sacrifices I have to make.
I'm working on being happy and content with the way my life is right now, but I am not there yet. Life right now is hard for me. It's a struggle to survive when feeling this horrible, day in, day out, week after week. And right now I don't have a happy bone in my body. I know I'm blessed though, and that is what is getting me through.
I keep on persisting with work because I refuse to believe that there isn't hope for this, but being realistic at the same time, I struggle to see how continuing functioning like this will get me any better. It just seems silly. It's sheer stupidity, really. But I keep believing anyway.
I'm waiting to see if this graded exercise therapy I'm trying will make work life less challenging. My exercise physiologist has recommended some changes be made at work, so I'm waiting to see how things go with that. Hopefully things will start to become a bit more bearable soon.
Go back to work, they said. You will feel better, they said.
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