As you all have been able to tell, since I decided to go back to work my posts on here have been fewer and farther between. I only work about 12 hours a week but I am finding that I am having a lot of trouble with more frequent relapses since I went back out into the working world 1 1/2 years ago. I love working. I love feeling like I am doing something useful and I like getting out and talking to people. But with the relapses coming more often, I am thinking more and more everyday that it’s just not worth it.
We don’t depend on my check to pay any bills so money is not an issue. My main problem is that when I think about being here alone all day, all of the time, every single day, I start to have panic attacks. But I am losing precious time – time that continues to tick away and doesn’t stop because I can’t function. Yesterday I worked 5 hours. When I got home at 2:30, I threw something together real quick for dinner, got on the computer for a few minutes to check emails, and from 3:30 p.m. on I was on the couch in misery.
Today I was going to run some errands but I’m still too wore out. And tomorrow I get to go back to work again, and I’ll probably lose another night on the couch. I know for most of you reading this you would be saying that the decision is easy. Quit working. But for someone like me who has always been a hard worker, a Type A personality, and a perfectionist, giving up is not that easy. No matter how sick I feel, there is always still a little bit of fight in me that wants to live as normal a life as possible. It’s like I’m still trying to prove that I have this terrible, debilitating disease but it’s not going to hold me back – it’s not going to stop me! But it is stopping me and my family is noticing the decline steadily worsening.
I also fear that I am heading for a relapse that will knock me down for months and that is probably the one thing that scares me the most.
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I’m newly diagnosed, (late February 2010 – typical onset early October 2009 – from “flu” that never recovered), and am currently working full-time still. I feel your pain (literally). Every day is a struggle, and on “bad” days I’m calling out (sick) which is averaging a minimum of every two weeks. On a “good day” I collapse at the end of the day and am only able to “work” period.
I understand that you gain alot from working (being a type A personality also) – but you need to determine for yourself if the gains outweigh the cons. Perhaps you could volunteer somewhere a few hours a week for a cause that you feel strongly about in order to still “be as active as possible”. With volunteering it wouldn’t be such a strict schedule and would allow you some flexibility.
For myself personally, if I wasn’t the primary breadwinner, I would be out on medical leave today – but this is a decision each of us has to make for ourselves – only you truly know what is best for YOUR body.