I’m not gunna sugar coat this: I still always feel like crap. From the minute I wake up, till the minute I go to sleep. Day in, to day out. Every day just sucks. I look forward to nothing, I know better than making plans. I’ve been on anti-virals for over a year now, I thought for the longest time that it was just the Epstein Barr virus was the problem because that’s what my GP thought, but it’s become apparent there’s more to it.
This has been a long journey with a multi-facetted, very complicated illness that many doctors do not understand. Most doctors don’t even know what kind of specialist to send you to, especially because the symptoms mimic many, many other illnesses.
I tried to see a specialist on Chronic Fatigue about a year ago, but those around me strongly discouraged it. What would this doctor know my GP didn’t? I cancelled my lucrative appointment. All the time I wonder where I might be if I had seen Dr. Lapp last year. Would it have saved me a year of unbearable suffering? Perhaps, perhaps not, though I always wonder. It’s my fault for not following through with what I knew was right for me. Live and learn, a very tough lesson. Do what you need to do for yourself, just one of the many things I’ve learned through this. Why didn’t I go? Dear God, why didn’t I go? It makes me shake.
Finally I think I have the right doctor. This guy is one of the pioneers in the field of FMS/CFS and has those conditions himself. I saw him at the end of January and after spending an hour and a half with me (most specialists spend about 5 minutes) he ordered a battery of tests. My follow up appr was slated for March 20, but I’m so miserable and in such suspense, I know I can’t wait that long. So after much begging, pleading, promising of first born children, I see him on Tuesday.
I have been working under the misapprehension that EVB was my only problem, I stopped considering that other things might be at play. I started reading “From Fatigued to Fantastic!” by Dr. Jacob Teitelbaum and have been kicking myself for not reading this sooner! Dr. T (I’ll call him) explains that people with FMS/CFS typically have about 4 things going wrong with them: sleep disturbances, hormone deficiencies, infections, nutritional deficiencies.
Luckily I’m a rare case that doesn’t have trouble sleeping. I use luckily lightly because I have trouble NOT sleeping. I am constantly desperate for sleep. I was cooking the other day and was so overcome with exhaustion that I had to shut off all the cooking food and take a 4 hour nap. So frustrating!!! I have tackled the infections portion as best I can with the anti-viral meds, and have been working with a nutritionist to optimise my food intake. I am lucky to work with a renowned and published nutritionist. She and another doctor have their own line of supplements and she has me on the best things vitamins/supplements money can buy.
The last missing piece, which seems glaringly effing obvious new is hormone deficiencies. Ok listen to this list of symptoms of Adrenal Insufficiency: severe fatigue (ding ding ding!!), recurrent infections, poor response to stress, achiness, low blood sugar, low blood pressure.
My symptoms match 100% perfectly. Yes, I’ve had blood tests before, but normal blood tests given by a GP aren’t sensitive enough. If you fall within 2 standard deviations, your bloodwork comes back as normal. The range is too big! Would the first specialist I wanted to see have caught this? Of course, he was supposed to be one of the best in the world. Anyway…
On Tuesday, I will be able to tell you, my loyal readers, if this is a reality. Please God, please. Maybe I will stop being too weak to get off the couch again. I will want to stay in contact with friends. Everything will stop feeling like a chore. I will be able to start painting, doing Just Dance on the Wii with Matt, volunteer to help w pet adoptions, go to massage school, get married, have children. Feel like an actual person again. Tuesday Tuesday Tuesday Tuesday Tuesday Tuesday Tuesday Tuesday!!