Thursday, January 25, 2007

Working for a Living

I did it! I survived my first half-day back in consulting work. I'm still floating on a cloud of elation, relieved that I was able to manage this and thrilled that I am contributing to our family income. I've had so many conflicted feelings about work and CFIDS over the past few years that this feels like a big step forward emotionally, a huge achievement.

Years ago, BEFORE, I worked as an environmental management consultant, helping companies to learn how to decrease their environmental impacts. It was rewarding work, though very intensive and requiring constant travel. I enjoyed a bit of minor celebrity, becoming fairly well-known in my field, giving talks at conferences, and even publishing a book. After Jamie was born, I moved into management to try to reduce my travel, but I was still had a hectic schedule. By the time Craig was born in 1998, Ken and I were both pretty burnt out, feeling like our lives were flying by in blur. In 2000, I left my career behind to try to slow down the pace of our lives and enjoy my family more. We figured we had enough savings to last us a year or two, and I could try to earn money through freelance writing. I was thrilled with this change, feeling very content with our more relaxed life, and excited about my new writing career. Ken and I always said that anytime we needed more money, I could do some consulting.

Then, on March 2, 2002, I thought I'd come down with a nasty flu...and you know the rest of that story, right? In the past few years, I've had offers for consulting jobs, but I didn't have the stamina to do the work. Each time an opportunity came up, I was wracked with conflicting feelings. I desperately wanted to contribute to our income and relieve some of the financial pressure I knew Ken was feeling, but I was scared that I'd commit to a job I couldn't do or push past my meager limits with long-lasting consequences.

Several times in the past two years, I came close to accepting a job. The first opportunity seemed doable since the company mainly wanted me to do the sort of work I could do at my own pace, at home. After much deliberation, I signed a contract with them, and then they told me the first thing they wanted me to do was a three-day audit at a site several hours away. Auditing is very physically and mentally exhausting work, and this job would also require travel. I knew I couldn't do it, so I was forced to tell them about my illness. I tried to downplay it and suggested ways they could accomodate me - working in half days, taking a 2-hour break mid-day, etc. Guess what? I never heard from them again.

Another opportunity came up six months ago when an old colleague called to ask if I could help with one of her clients. She's a good friend and knows all about my CFIDS, but the physical challenges still seemed daunting to me. I spent weeks worrying and obsessing over it. I could see that Ken desperately wanted me to do it, I knew our finances were getting tighter and tighter, but it still seemed like an insurmountable physical challenge. I ended up saying no and felt that, for the first time, I was admitting that I might never be able to do that kind of work again (or earn that kind of money). I sort of said good-bye to that part of myself. I also came very close to actually throwing away all my old files and binders.

Then, last month I got an unexpected call from someone whom I'd previously turrned down work. He knew about my illness but had a small, local job perfect for my background and wondered if I was well enough to do it. I'd had a great two months, he had no problem with my working in half-day increments, and the client is only 14 miles from my house. So, here I am! I spent every ounce of energy the past two weeks preparing and relearning all the stuff I used to teach other people. I even had to reread my own book. I was scared to death that I'd wake up this morning unable to get out of bed, so I've spent much of the past week lying on the couch, saving up my energy. But I did all the prep work, made it through my half-day on-site today, and can now send an invoice for a very nice sum. Hooray!

It's probably just adrenaline or endorphins or something, but I really felt well today and didn't have any symptoms at all while I was at the plant. I realize there'll be payback, and I expect to crash tomorrow, but for now I feel good. I think we'll break out the sparkling fruit juice tonight and celebrate.


Anonymous said...

i have been reading a few different dosage regimens for Valcyte and was wondering what you are using.


Mary Anne said...

this is wonderful news for you and your family. yay! I am so happy for you and hope you continue to feel better each day.

Sue Jackson said...

Bill -

My doctor and I weren't completely sure about disage either. She started me on a single pill (450 mg) per day and said she'd check the full text of the Stanford study to be sure. I'm interested to know if you've heard differently. Thanks -


Anonymous said...

i believe the Stanford trial dosage is 900mg (2 pills) twice a day for 21 days

and then 450mg (1 pill) twice a day there after for a total of 6 months.

also they check CBC w/ diff and platelets, kidney and liver function once a week during the higher dosage and then once a month at the lower dosage.

that is my understanding.

if you visit the message board over at:

there are a few people on Valcyte and many more interested in trying. there is quite a bit of info there on this topic.


Anonymous said...


i also wanted to let you know that there are a few different DRs using slightly different protocols for the Valcyte than Dr Montoya.

you will find people trying these different dosages at the immunesupport website.


Anonymous said...

That's awesome Sue!! You're in a field I've been interested in but can't pursue because of CFS. It's interesting to read your blog about your work. You're helping to save our planet :) I'd be intersted in hearing more details about what your job entails.