Being a Mom with ME/CFS & Fibromyalgia

My almost two year old daughter goes to a really great pre-school for toddlers.  Every once in a while I get asked to bake a plate of cookies or, yesterday, fill out Valentine's for the 22 total children in the program (including the regular pre-school).  These are tasks I can usually handle without too much effort but last week, one of the teachers asked if I would attend a parent's meeting later that week.  I agreed thinking it had to do with the financial problems the center was having and the talks of closing it down.  It turned out it was just a regular monthly meeting that I hadn't known existed until then.  I sat and listened to a recap of last months meeting which included plans for upcoming fund-raisers and holidays.  I started to feel uncomfortable as parents began raising their hands to volunteer for different jobs associated with the latest fund-raiser, a St. Patrick's Day Dinner at one of the local restaurants.  Another parent, who was a teacher at the local public school, talked about ways she could publicize the event to her students and other teachers.  I began to quickly realize that they were expecting a level of parent participation I simply could not offer.  I started feeling sad and weak.  I really wanted to be a parent that got involved with my daughter's activities.  After all, this was just the beginning.

I left the meeting thinking I would never attend another one.  Then I began imagining what I would do when one of the teachers asked me if I could help serve the St. Patrick's Day dinner or help with clean up.  Would I tell them I had Fibromyalgia and Chronic Fatigue Syndrome and as a result was unable to help much physically or even sit and collect entry fees or sell raffle tickets.  What would they think?  I have an idea it would be something to the effect of - "Fibromyalgia?  What is that - some diagnosis created to sell more drugs?" Or "Chronic Fatigue?  We're all tired lady, suck it up and give us a hand here.".  I quickly dismissed using those as explanations for my lack of participation.  My doctor had told me he thought I may have Mixed Connective Tissue Disease.  I could tell them this was my ailment because maybe it sounded more "real".  Maybe I could tell them I had Lupus.

My heart quickly sunk when I realized that doing this would only perpetuate the total lack of understanding that exists about Fibromyalgia and Chronic Fatigue.  I felt trapped.  My heart told me I had to spread awareness about the seriousness and "realness" of these diseases and not hide behind some more serious "sounding" disease so people would more easily understand my suffering.  At the same time I feel I don't have the energy for this fight.

I don't know yet what I'll say when I'm actually presented with a request for my help at the fund-raiser.  I'll only know when the words leave my mouth.