Tuesday, October 2, 2012

Tempted to throw in the towel

 
 
This last week I thought I was coping okay. I felt like I was making progress. I managed a short trip to the shops, I went to work, and I even increased my exercise by two minutes, too. I did all that without feeling as ill as what I normally would, so I thought that I would escape the wrath of post exertional malaise this week around. For the first time in ages, I felt things were looking up. Finally this whole graded exercise and pacing program seemed to be delivering signs of slight improvement.
 
Although I had to leave work early last Wednesday because I suddenly became extremely dizzy and nauseous due to medication side effects, fatigue wise, I felt fine, which was a first. The day after work, instead of feeling miserable, I actually enjoyed the day resting, and felt up to pampering myself with a pomegranate and manuka honey facial.
 
By Friday morning fatigue had turned it up a notch, but I felt like I was still doing fine. I had a skype session with my exercise physiologist and reported my progress. Things seemed to be going well.
 
And then all hell broke loose.
 
Following my skype session, post exertional malaise took me by surprise and knocked me for six. And over the weekend it became dreadfully unbearable. It hit me harder than it ever has before. CFS is a deceiving, sneaky bastard.
 
Since starting back at work, weekends have always been hard for me, as that's when the indescribable exhaustion peaks. I do feel dreadful after my shift, but it's the weekends that are the worst. I hate them, and I dread them. If I'm lucky, I'll feel like death one day, but lately it has been both, and the recovery extends into Monday, and sometimes Tuesday. And then I drag myself into work on Wednesday to do it all again. It's beyond ridiculous.
 
This weekend I have really struggled. I think I'm just at the end of the rope, and I can't hold on any more. Working all these shifts for months, not recovering properly, barely able to function, and unable to do much else is taking its toll, physically and emotionally. Enduring an hour long skype session with a psychologist on Saturday, which was by far my worst day, definitely didn't help matters either.
 
I could hardly do a thing. All I could do was eat, breathe, sleep, and pin things on Pinterest.
 
You know you're struggling when from the moment you get up in the morning, you start counting down the hours left to survive in the day.
 
It's days like these when I'm tempted to throw in the towel. And by that, I mean - quit everything - appointments, work, exercise. You know, curl up in a ball in bed and hide from the world. It's days like these that make me lose my motivation and my determination to try and get better, because that's just it, I'm not getting better. I'm running myself ragged trying to get better. I've done everything medical professionals have told me to do- I'm exercising, I'm back at work, and I've even agreed to see a psychologist. But it's just all too much, it's just too freaking much.
 
I am overwhelmed. I cannot cope with all of this for much longer. No matter how positive I try to be about it, and no matter how many times I tell myself that I can do this, I just can't. It's time to face reality. As much as I want to do all these things, I can't. I am suffering too much because of them. It's time to stop listening to doctors and start listening to my body - it's so easy for them to tell me to go back to work, and try to pursue some sort of study, when they aren't the ones living this hell everyday. They don't have to feel how I feel.
 
My life has become all about surviving work, and counting down the hours that are left in the day. No hanging out with friends. No going out at night time. No enjoying life. This isn't healthy. I'm struggling, and it's time I accepted that fact. It's starring me in the face everyday. It's evident in my bursting washing basket. It's evident in the clothes that are still lying on my floor from three weeks ago. It's evident in my craft room, which looks more like the inside of a tip truck.
 
I hardly enjoy my hobbies any more, as I'm just too unwell. I've hardly left the house since I started back at work, and simple tasks that need to get done, just aren't getting done. Clearly, work is causing too much of a setback every week that it's hindering my recovery from CFS.
 
Something has to change. Something has gotta give. This has to stop. Enough is enough. I am better than this. I deserve better than this.
 
The thought of another skype appointment and working another shift stresses me out, because I don't want to feel the way that I've been feeling another week. I can't do it any more. I've tried, and I just can't.
 
So I've found myself stuck between a rock and a hard place - I don't want to quit work, but I also don't want to keep feeling like this. It's all too hard for me to deal with right now. The thought of having to give up work has been running through my mind for over a month now, and I just keep ignoring and fighting it, because I enjoy working (aside from the pain, fatigue and brain fog, of course). I like getting dressed up and putting on a bit more makeup than I normally would. I like earning my own money. I like feeling useful again, and I like that my week does have a focus. The problem is, is that this focus is out of balance - every week is focused on recovering from my last shift and resting for my next one. This isn't the life a girl in her mid twenties should be living.
 
Work is the only thing I have left, and I don't want to give it up, but I feel I have no choice. I fear the way I'm going, I'll just be stuck like this forever. This isn't getting me better, this isn't going to give me a social life. Staying single and housebound is not what I want for my life. If I quit, I could invest my energy into going out at night every now and then. If I quit, I give myself the best chance at recovery, and study could be a possibility in the future.
 
With spring racing and Christmas coming up, work isn't going to get easier, it's going to get harder. And as much as it's tearing me apart, I think I'm going to have to let it go for awhile. I know that quitting isn't the answer, and that I'll still struggle if I don't work, but work is taking all of my good days away from me, and I can do something about that.
 
I've been asking myself is this really worth it? The answer is, no it's not. So it's time to do something about it. As much as I like having the extra money, it's not worth it. And I'm blessed to have my disability pay to fall back on.
 
I'm not going to give up and chuck everything in, as much as I am tempted to right now, it will only create more problems in the long run. So I've decided to focus on one thing at a time. I think that should be the graded exercise therapy, so I'm going to cancel my sessions with the psychologist for now. Regarding work, I'll have to ask if I can take a short break, and see how things go. I don't want to completely quit my job if it can be helped, because I'm just too uncertain about things right now, and scared.
 
Knowing that I have a job I can go back to makes dealing with this crap much easier and less stressful. My managers are quite understanding, so hopefully things will all work out. I've had many breaks over the years when the fatigue has become too debilitating. Ideally, I shouldn't work for the rest of this year, and just focus on my graded exercise therapy program, craft and socialising occasionally. If my health has improved by early next year, then I'll look at adding a short shift at work back in the mix.
 
I have high hopes that if I give work up for now, I'll reap the benifits of graded exercise. Right now I can't exercise and work, it's just too much for my body. And that's okay. As far as I'm concerned, any doctors who think otherwise can go jump off a cliff.
 
So that's the plan. As hard as it is, I'm sticking to it.


***Post edit: Work is letting me take another break until I'm feeling well enough to return and try again. How blessed am I! Such a relief.
 
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5 comments:

endohope.org said...

I haven't got any answer - there are never any simple answers for something like this, but I think everyone that works with chronic illness feels like this from time to time.

It's a constant juggling act, and you never feel as well rested as you should be, and you're always doing the best you can to pace yourself.

The only thing keeping me going through each day and each week is momentum and willpower. Some days it feels like if I don't keep going I'll lie down and never get up again.

I hope your plan goes well, and I wish you every success.

Aviva said...

CFS is just a cruel, cruel mistress who likes to fake you out and then slam you down. Sigh.

Truly, I hope your plan goes well and you're able to make progress and feel better.

Tamara Epps said...

So sorry to hear that you are struggling Emily, but also glad that you've reached the point where you know what you need to do, to start trying to make things better. I have you in my thoughts and am sure you have the strength to make (and stick to) the hard decisions needed to continue living.

phylor said...

Chronic illness is so unfair; sorry that it has you in such a rough spot right now!
Sounds like you have a plan, tho, and I hope that it helps!

ArianeK said...

I empathize so much - this is what my life was like from spring of 2007 when I first started working after finishing grad school until this spring when I quit my job. I was sooooo beyond burnt out and it took me about 3 months to recover from pushing myself so hard for so long.

It's been kind of awesome and kind of terrifying taking a break from working. I've mostly been working on getting stable as possible healthwise, and also taking time to do creative projects and socialize a little when I can. I'd like to find something I can do (hopefully creative!) from home that will allow me to still have a career of sorts without it sucking the life out of me. (Also I'm not on disability, so I can't live off my savings forever...)

I have to believe there's a better way to live.

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