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.

Alpha Nutrition Diet.....No More

Well, I didn't make it through the ten days of the diet again.  Seven was as far as I got.  Yesterday I was so discouraged and worn out I just gave up and ate almost an entire box of cookies.  Boy, did it taste good after seven days of rice, water & ENF. 

I'm not really sure if the diet was helping me or not.  It seemed like it was during the first couple days but after that I'm just not sure.  It certainly didn't make anything worse.  I do recommend though, for anyone trying the diet, to mix the ENF with water not juice.  It tastes much better with juice but gave me horrible heart burn.  I wish I could report something more conclusive. 

The idea of delayed pattern food allergies still seems to make sense to me.  I do believe that all the chemicals in our food supply must be having repercussions of some kind.  The idea that the constant ingestion of these chemicals into our bodies is screwing up our immune systems makes perfect sense.  Let's face it, during millions of years of evolution, our immune systems have never encountered such a bombardment of chemicals (pesticides, preservatives, hormones) and they don't know how to process them.  They attack them, but these are not like the viruses and bacteria the immune system evolved to destroy.  It's no wonder the immune system goes crazy and starts attacking things it's not supposed to.  It's no wonder that we become allergic to foods that, in the past, we weren't really allergic to much.  I think it also accounts for why so many more people are reportedly getting autoimmune diseases.

My mom is a retired grammar school teacher, now substitute teacher.  She tells me that there are classrooms that are classified as "NO PEANUT ZONES".  This indicates that a child in the class is so allergic to peanuts that they will go into anaphylactic shock if they're even around peanuts.  This means that no child in that class can bring peanut butter and jelly sandwiches to school, and their parents receive a notice at the beginning of the year indicating this.  I remember kids being allergic to bee stings and poison ivy but nothing like what my mom tells me about.  Does anyone else find this strange?  Why are so many children so deathly allergic to foods? 

Maybe one of these days I'll get up the will-power to try the Alpha Nutrition Diet again.  We'll see.

Another Horrible Week

My next post was supposed to be a continuation of the long list of drugs and experiences I'd had with those drugs during this ordeal.  I must, however, take a short detour with this post as it may have some relevant information to add.

My week started out this past Wednesday.  My doctor had prescribed Welbutrin, 150mg per day to address my severely, worsening depression and Prednisone as a third experimental trial to see if the previous results I'd had (see last post) would repeat themselves  The Prednisone dosage was to be as follows:  Day 1 - 60mg, Day 2 - 50mg, Day 3 - 40mg, Day 4 - 30mg, Day 5 - 40mg - Day 6 - 0mg, Day 7 - 40mg, Day 8 - 0mg, Day 9 - 40mg, etc.and to follow that dosing till I spoke to him.

The next afternoon, after having taken both medications my symptoms began to worsen.  Many of my old ME/CFS/Fibromyalgia symptoms that had been under control for about the last two months, came back with a vengeance.  I felt the all-over body pain creeping in and as the hours ticked by, they got worse.  I started to feel as though I had a fever (but of course I didn't actually) and coordination and energy dropped.  I was so depressed.

At first I thought that it may have been that I had missed a dose of Zoloft the night before.  When I had started taking the Zoloft (again) two months ago, my pain had mysteriously gotten much better.  My condition in general was better and all from a low 100mg dose of Zoloft it seemed.

I got back on track with the Zoloft and hoped to see a change after a couple days, but none came.  The pain and feverish feeling (on top of the already present weakness & fatigue) were getting worse if anything.

Then yesterday, I don't know what the hell happened.  I wondered if I had mistakenly gotten caffeinated coffee (a big no-no for me) that morning during my daily .5 mile walk to Dunkin Donuts because about an hour after I got home, the you-know-what hit the fan.  My mental state degraded, gradually escalated into a full-blown anxiety attack, complete with shaking limbs, heart practically beating out of my chest, that feeling that I was completely out of control and may just die any moment.  I couldn't talk to anyone or keep my mind on a single thought.  This lasted for hours (the severity waxing and waning) until I excused myself with an Ipod & headphones and locked myself into a room, lyed down on the bed, listened to Brahms and tried breathing exercises.  Oh yeah, I also took .5 mg of Ativan which is what I think finally brought me out of it for the most part.  As a result of my anxiety and just plain being out of my mind, I had missed a Prednisone dose (30mg).

The day wasn't over though.  My husband had flown in from LA that day after not having seeing me and our daughter for about six weeks.  We ordered pizza and sat down to eat.  I still wasn't feeling well and was not (to put it mildly) the life of the party but it seemed that the worst of my anxiety was over.  At one point I leaned my head over toward my husband's shoulder for some comfort.  The moment my head was down, my world began to spin out of control.  I'm talking full vertigo here - didn't know which way was up.  I also felt as though I would get sick at any moment.  I told everyone I needed to lay down and somehow stumbled to the couch as the worst of it was subsiding.  As I layed down, I still felt really dizzy and nauseated, but the spinning had stopped.  I remembered the missed dose of Prednisone and asked my mom to get it for me thinking I may be having withdrawal.  My dad took my blood pressure and it was 113/72 which is on the low side, but my pressure tends to be lower.  In about thirty minutes the dizziness got a little better and I was able to get up (with assistance) and be led slowly up the stairs to bed. 

The dizziness and subsequent nausea plagued me all night long.  When I got up to use the bathroom in the middle of the night I lost my balance and almost fell twice.  This morning, I don't feel too dizzy but weak and unsteady on my feet. 

I'll be calling my doctor as soon as his office opens.