Work and Chronic Illnesses Support Group

Hello everyone. It's been real quiet in this group for a while now. I haven't had any major work issues come up, until recently. You see, back in the day, I would send abstracts and present at conferences all over the world. It was awesome and I loved to do it. Now, since diagnosis, almost one year ago, I have absolutely no desire to travel at all, especially by plane. But that is probably confounded by my new role of parent (I have a two year old).

Over the past few days, it's come up at work about big conferences around the country and possible topics that our agency should be presenting on. I've been surprised at my response. It's pretty much, sure, I'll work on the presentation for you, but I'm not going.

It feels so foreign to me, if you knew me prior to diagnosis. But here we are. I'm just wondering if others have gone through this or something similar, where all the work related things that you used to love to do, or were passionate about, are now just like, eh, let someone else do it. Or is it just age? or being a parent? or a combination of the three?

I'm still in this space, a year later, of just being grateful for each day that I am able to work. And that's enough and that's a good day. Would love to hear your responses.

Some I am finally handing over to other people, because I just can't any longer; and it feels wierd but also liberating!

Yeah I can really relate! I went into college really gung ho about everything. Second year in I started a downward health spiral. Started working full time four years ago and its been tough. I'm sure people think its weird I don't want to move up in the company, travel, work overtime, etc, but no one has asked (they don't know I'm sick). What I can tell you is that between illness, kids, caring for a parent, nearing retirement, etc, so many folks have this. It feels foreign to me to throw away a bunch of big goals. I've replaced them with more reasonable goals.

For example, instead of being in charge of a project at work (and the overtime and stress that goes with it), I just want to get through the workweek with enough energy to still spend time with hubby on the weekend (doing something other than sitting on the couch). What surprises me is that I don't get too down about it...its like this is my reality and I'm dealing with it. I don't dwell on what I can't do anymore. I think these realizations we have that in this new reality we can still be fulfilled and happy are great. Best wishes.

Yes, tortoisegirl, I can completely relate to everything you said. Even recently, in my performance evaluation my supervisor wrote something like I have potential for leadership roles. I looked at him and said, "Uh, can you take that out?" He looked perplexed. I told him, I'm happy in my job, with my staff. I don't want a promotion. I just want to be able to do what I'm doing now. His next question was, "Shall we talk about career development?" I sighed, I looked at him and said, "I've been developed. I'm where I want to be." I shock even myself. Who is this person? But you're absolutely right. Getting through the week as simply as possible, so I can enjoy my family is much more important to me right now than taking on more stress for more supposed success at work. We're all replaceable anyway.

I wrote in an earlier email post that I lost my job of 13 years to Fibromyalgia. I couldn't focus as easily and slowed down. I used to be known for my speed. Supervisors would give me projects that were time sensative because they knew I'd do it fast and do it well. That slowly slipped away over a matter of a year as I slowly got worse with my Fibromyalgia. In the middle of that year I was a zombie, barely able to stay awake and concentrate. I lost my job because I couldn't keep up.

Now I am happy to have a 40 hr a week job that pays about $4.00 less an hour because it's easy and busy. Sitting at a computer in a cube alone all day would make me so tired I would just want to sleep. But that's what I did at my last job.

As I've started to work again I've had to remind my boyfriend that I need to recover and relax on the weekends or I can't perform for 40 hrs a week. He's starting to understand. We aspire to one day to be able to hire a maid to help us keep the place clean, 'cause I suck at it! I hate cleaning in the first place and am too tired in the second place.

Career path? No thanks. Happy to be working.

Annelle

I hear you! And the maid thing is an awesome idea! I've tried unsuccessfully to find one, and have given up for the moment. My husband is really close, like within weeks of graduating, and he has told me that he will take on the housework once he finishes. Thank goodness, because finding a maid has proved harder than I thought.

Hiring a cleaning service recently was one of our better decisions. I just can't do it anymore (at least not while working and doing the grocery shopping, food prep, etc) and hubby got stressed out over the thought of having to spend a couple hours cleaning every couple weeks lol. Its expensive in our area (as I'm sure a lot of big cities are), but we shopped around to find a good rate with a reputable company, and are just having them do the basic major stuff like bathrooms, floors, and dusting.

I think it was worth the cost for us, but we're lucky enough to be making some good money. I'm all for hiring out what you need to if it keeps you working. Same with all the money I pay out for healthcare. I don't think I'd be so aggressive with it all if I wasn't trying to continue working.

I also agree on the finding a job that works for you. A lot of folks with a chronic illness or pain would be asking for a desk job, but I see what you mean about needing a little activity. I got lucky that the career path I chose before everything went downhill was a good fit for my health. Most days I question how and why I am still working though. Best wishes.

I kinda still have a desk job. Sitting in front of a computer at a check in desk. I also don't have health insurance yet with my new job. Prescriptions cost about as much for me as a health insurance premium so I'm going to try and apply for coverage. I'll probably get denied, but then I can apply for a state funded coverage that caters to pre-existing conditions. Sucks being sick with no insurance!

I hear what you all are saying about accepting/enjoying your jobs as they fit in with what we can do.

I had a fork in my career path where I could have gotten back into managing customer facing projects, but I turned it down. With the fatigue and never knowing whether I would be having a good or bad day physically, I felt like I couldn't reliably give customers what they were paying for. On good days, yes, on bad days, no.

So, I stayed in a tech writer position. On bad days I can work from home or hide in my cube. Most meetings are over teleconferences. And on the days when it's hard to breathe, or walking from teh bed to the bathroom gives me a coughing fit, I can work on my laptop in bed.

It works out, and I'm grateful my job and company are flexible enough that I can do that, while still supporting my family.