Tuesday, September 4, 2012

Go back to work, they said. You will feel better, they said.

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.
 
 
(via google)
 
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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13 comments:

Tamara Epps said...

Oh hun, I can really feel for you. It's true that I can't wait to go back to work but I know that when I do my life will be as you describe right here (to be fair, it's mostly like that now, with me struggling just to keep getting up each day). I am terrified that that will be my choice. I wish I had something comforting to say, but I know there is nothing I could say.

Hugs, and please know that I am here for you if you ever need it.

Aviva said...

I don't know if you need to work for the money, but if that's not the reason for pushing yourself through this, maybe you could find a volunteer shift somewhere that would be easier on you but still show your doctors and anyone else that you're making an effort, etc.

I have a kid, so I volunteer in her school. I can't do classroom work because being around all those kids and the noise and the chaos just overwhelms and exhausts me. So I volunteer in the school library for ~1.5 hours per week over the librarian's lunch hour. At that time of day, it's just the occasional kid coming in to find a book or a few teachers using the computers to check their email. I spend most of my shift covering new book covers or repairing/replacing old ones. It totally wears me out, but I enjoy it a great deal. (I've always loved libraries and books.)

Good luck. I hope the accommodations at work and the physical therapy/exercise program help. But if they don't, remember that quality of life is huge and if working a shift means you don't have any during the rest of your week, is it really worth doing?

Good luck, and I'll be hoping things get better for you!

Talitha Kalago said...

I don't know if you want someone to say this, or you really DON'T want someone to say this, but:

Its not worth it.

Going to work if it makes you miserable and stops you from doing anything else is NOT WORTH IT.

You need to say it was causing an unacceptable detriment to the quality of your life and that if they (your doctors) expect you to keep working they have to do A LOT MORE to manage your condition.

They're the doctors. Don't let them blame you, THEY aren't doing their job.

You should also start speaking to a psychologist. Not because you have been depressed, but so you have someone to put this stuff into perspective and tell you your feelings are valid and you're not making excuses. Doctors won't ever do that, because they're lazy bullies.

Quit work, focus on being happy.

Everything else is bullshit.

Shannon said...

I so agree with Talitha, it's not worth it if you are miserable and fatigued even worse. Maybe it's time to switch doctors?

I completely relate to how you are feeling. A simple trip to my doc's office and back will have me recovering for days.

As if don't have enough to worry about, right? Pain, fatigue, screwed up sleep, insomnia.. and the guilt. I've forgiven myself for being sick. I've grieved for the loss of my old life. But I'm still having a hell of a time trying not to feel guilty for not being able to financially contribute, and worse, not being able to physically help around the house. It's just awful. The guilt sucks!

But we're not alone. Most of the people I've met with chronic illness/pain feel the same way. It's nice knowing people that truly understand how it is living with chronic illness/pain.

*gentle hugs* Take care of you first! Don't let anyone tell you how things are, or should be. Listen to your body, it knows better than any doctor possibly could!

Shannon said...

I so agree with Talitha, it's not worth it if you are miserable and fatigued even worse. Maybe it's time to switch doctors?

I completely relate to how you are feeling. A simple trip to my doc's office and back will have me recovering for days.

As if don't have enough to worry about, right? Pain, fatigue, screwed up sleep, insomnia.. and the guilt. I've forgiven myself for being sick. I've grieved for the loss of my old life. But I'm still having a hell of a time trying not to feel guilty for not being able to financially contribute, and worse, not being able to physically help around the house. It's just awful. The guilt sucks!

But we're not alone. Most of the people I've met with chronic illness/pain feel the same way. It's nice knowing people that truly understand how it is living with chronic illness/pain.

*gentle hugs* Take care of you first! Don't let anyone tell you how things are, or should be. Listen to your body, it knows better than any doctor possibly could!

piffle said...

eurgh, quit, same advice, over here we get our money dropped if we dont do forced work programmes for no money even if we are disabled or sick, you guys are lucky and you should get better and not feel pressured, its great your given the grace to get better and you CAN live and eat and have a roof on your head without being forced to,i say take the opportunity to rest.

Anita Morris said...

*offers gentle hugs* I also have RA, Fibro,and CFS with other complications. My crafts of choice are embroidery and drawing

I agree with those who say this is not worth it. I also know how hard it is to communicate with doctors. My psychiatrist usually does a good job but I've been struggling to communicate that I'm too sick to work.

I'm in Melbourne and very happy with my Gp if you want a recommendation for a new one.

Miss Chronically Creative said...

@ Tamara: Yeah, I was worried about this happening. I knew it would be hard, but I didn't think I would struggle this much. If getting out of bed and doing things around home constantly makes you feel worse then I wouldn't recommend thinking about going back to work just yet. Just have it as long term goal and work towards being able to get out of bed and walk to the letter box or something like that. I am going to send you some baking stuff soon, so hopefully that will encourage you and give you a fun goal to work towards. I was able to manage doing a few things around home and I was getting out and socialising before I went back to work - and I'm still finding it challenging. Are you on disability, are you able to get it? I hear it's so much harder to get it outside of Oz.

Your comment is very comforting. I am always here for you too.

@ Aviva: I wouldn't be poor if I didn't have the money, but it is helping me save for a new car and pay for my sessions with the exercise physiologist.

Volunteering is a great idea, but what's available near me requires just as much, if not more energy than my paid job. This may sound awful, but I figure if I'm going to use up energy I may as well earn some money.

I think it's fantastic that you volunteer and have found something that you enjoy. It's inspiring that you do that and look after you girl. I admire you so much!

I have been managing a little better this week and my shift was super easy - there were hardly any customers! So I'll keep going and see how things work out.

@Talitha: oh I love you. Haha. I definitely feel a lot of pressure from my doctors. One of them (after I explained how much I was struggling with one shift) still wants me to study something as well! Their advice on the whole social thing was just to keep in touch via facebook. Yeah, because sending a message is so much better than going out to a party. Douchebag.

I don't think quitting is the answer right now. I was struggling a lot at times when I wasn't working. and I'm still going to feel like crap if I stop work. Then again, the energy I use for that one shift could be used for socialising one night a week. I do want to quit, but I don't, and it's tearing me apart. I'll see what happens with this exercise stuff first, and then I'll have to make a decision.

I have seen a couple of psycologists and I didn't like them. Maybe I need to try another one. That's good advice. Thank you.

Miss Chronically Creative said...

@Shannon: I think you may be right about switching doctors. It's not easy though when you've been seeing them for years... I'd have to get my history faxed through which would make things really awkward. I'm too tired to be bothered dealing with that right now, LOL! Although, it would be really good if I could find a better doctor who understood the fatigue aspect a little more. I think I should ask around on formus.

Oh, yes, I totally get the grieving and the guilt thing. It's consuming. It sure is encouraging to know that I'm not alone and that there are people who can relate to how I'm feeling. Thank you for your lovely comment.

@ piffle: If I really hated my job I would quit right now! I really do love my job (some days would suggest otherwise!) and the people who work there are so lovely, encouraging and supportive - that's what's making it hard. I don't want to quit.

That's terrible! I've heard some shocking things about your system. It makes me sad. How do they expect you to get better? I know I shouldn't wish this illness on anyone, but sometimes I wish people that make these rules and give sick people hell, could just live with it for a few days. Maybe then they would show some compassion.

@Anita: Oh you too! And you're in Melbourne! Hearing from you has made my day. I am stoked that you do drawing and embroidery. I can do neither of those, but I do have a great admiration for them.

I am quite happy with my gp - it's my specialists that I am unhappy with at the moment. But thank you. Do you see anyone for your CFS, if you don't mind me asking?

Thank you for making me feel less alone.

Anonymous said...

Have you ever been evaluated for adult attention deficit disorder? I was experiencing many of the same things that you are describing. My wonderful therapist arranged for me to have an evaluatiion which was covered by my health insurance. It turns out that I have been struggling with add whichaccounts for my difficulty dealing with over stimulation or multitasking. Even when i handle it well, it causes extreme fatigue because I am working so hard to cope with everything,

Krissy said...

Are you still at Lincraft? I can imagine how draining that place would be!

I hope work gets bearable for you soon :)

Wendy Burnett said...

I agree with Talitha and Shannon - no matter how much you enjoy the good days at work, if it's destroying your ability to do anything else, it's not worth it.

I also work retail (anywhere from 16 to 40 hours a week, with an average of 24) and if I didn't HAVE to work to eat, I'd quit right now. There are things that I love about my job, and the people I work with are mostly wonderful, but the stress, agony and exhaustion are totally more than I can handle on weeks when food stamps become available.

Some days I drag in and tell the hubby that he can NOT say, "I want," "I need," "Can I have?" or "give me" because I just spent the last 5 to 8 hours hearing that every two minutes and could barely keep from screaming . . .

It sounds like the exhaustion and post-exertional malaise are keeping you from being able to take proper care of yourself, both physically and emotionally. Being able to do something you enjoy every now and then is JUST as important to your well-being as taking your meds and eating properly, and it sounds like this job has taken that away from you.

Tamara Epps said...

Thank you for your message of support, it really means a lot. I am currently fighting to get disability - they seem determined here to make more work for themselves by sending 'doctors' who just write down that you can do everything even when you blatantly can't.

And thank you for saying that it is okay to aim for something smaller such as walking to the postbox. You are so right, but it is so easy to forget the little bits of progress when I look at the big picture. I certainly am going to try and do a little each day and not feel so guilty that I can't work yet - after all, hopefully I will have plenty of years in the future to improve enough to work as well.

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