After living with Fibromyalgia (FMS) and Myalgic Encephalomyelitis (ME) since December 1992, I have tried everything and anything I can think of. My progress has been one of great highs, and also, some incredibly scary lows.
In the beginning, I like so many, navigated this journey by going to doctor after doctor and doing whatever they recommend. The results for me personally, were disasterous. More often than not, the medication created severe side affects that only exaberated the illness itself.
I recall taking amitriptyline for “depression” and “sleep issues” only to develop a severe seizure disorder. At my worst, I was having over a dozen seizures a day.
At another time, I can remember taking an antibiotic “that I would have no problem with” and found myself being rushed to the emergency room with what looked like a heart attack. Not only was this a particular type of antiboitic that I should not have been given (it only treated certain illnesses) but I didn’t have the infection that I was told I had.
After years and years of being a guinea pig, I started to realize that if I were ever going to get well, or at least get as well as I possibly could, it was paramount that I take control of my own health.
That led me into herbal products which then led me into eating a raw, unprocessed, organic diet (very much like the Wahl’s Diet) and supplemeting with herbs.
Then I suffered an extremely severe relapse as the result of being poisoned by a toxic household chemical. That relaspe was so severe I was bed bound, house bound, and wheel chair dependent. I had problems speaking, was in the dark repeatedly with one stint lasting 8 weeks, couldn’t watch tv/movies, couldn’t read books which is my passion, couldn’t lift my arms above my shoulders without serious heart complications, unable to eat and digest food, swallow and on and on.
I don’t think I have ever been so scared or unsure of my future as I was at that point.
Despite that, I had learned a truth during this ardous journey that gave me the tenacity and motivation to try one more time. I knew … and believed with everything in me … that what I put into my body was critical to my ability to reclaim my health.
So, I started drinking Amazing Grass (and nothing else) for six weeks. Before I could even imagine it, I was up and out of bed and functioning at a 40% level, whereas prior to the introduction of Amazing Grass, I had been lingering around 5-10%.
If you haven’t lived there, you have no idea how utterly devastating and overwhelming every day becomes. Hope is hard to hold on to. Determination is difficult to muster. A life of possibilites is almost impossible to dream up.
Everything you are taught about doctors, medication, health, healing, and recovery turns out to be this mirage. The closer you get to your goal, the harder it is to find it, attain it, or even see it.
While I am really blessed and proud of the progess I have made, I am not 100% and I still have severe PENE (post exertion neuro-immune exhaustion) on many days, plus I am still unable to grab my dreams by their coattails and run with them.
One of those dreams that I have held onto all these years is to run the Boston Marathon. I don’t know if I will ever be able to do that. But I am determined to get to a place where I am the best I can be.
In that vein, I have come to another cross-roads in this journey with two chronic illnesses. I am now at a place in my life that I realize I need to seek help outside of myself for this last stretch of the journey, if you will.
So, yesterday I hired a personal trainer who I spent two hours with (Thanks Becca) and went over everything from my illnesses, eating, weight, muscle tone, goals and dreams, gut issues and on and on.
At the end, I have a woman who will help me map out a plan that can be tweaked and modified as needed that will hopefully lead me to further improve my health.
I also am journaling what I eat this week as we discovered that I am probably not even eating 800 calories on any given day. While that may not seem like a big deal, now that I have lost 75 pounds, I am plateauing and I need to make sure my caloric intake is over 1,000 calories a day. Something I find very challenging to do most days, especially when I eat such a pure diet.
Additionally, I will be changing my eating patterns back to every 2-3 hours to help my body maintain a more constant energy level.
Lastly, I will be working with another woman to help me become gluten free and learn how to manage my diet without any gluten whether I am eating at home (easier to do), eating out, or eating at family and friends (very hard for me to do).
While the VA is torn about whether or not I have Celiac Disease, I have been playing with my diet introducing gluten than removing it. The devastation to my gut is almost indescribable. Pain, gas, swelling, weight gain of up to 5 pounds, inability to process and break down food, itchy skin, fogginess in my thinking and on an on.
Most people think gluten is not really a huge deal and I will be honest and say I was one of those people. I mean, how much havoc could gluten really cause a person right?
Until I heard this story.
A friend of my personal trainer was training hard for a marathon for six months. She didn’t lose ONE pound. Not one! She determined that perhaps gluten was the issue and so removed all gluten from her diet and then proceeded to lose THIRTY pounds!
If that doesn’t show the incredible havoc that gluten can wreak on those of us with Celiac Disease or even a gluten insensitivity, I don’t know what else does. It totally convinced me I couldn’t mess around with whether or not I had a gluten issue or not. The time was now.
The part I think I am most excited about, however, is the Egoscue Method for becoming pain free. There are two books which many of my readers may want to order and read (and which I have ordered).
I will be writing about my journey over the next 12 weeks and how I do on this protocol, including the up and downs, as well as any modifications that I have to make in order to do it.
The first book, Pain Free, A Revolutionary Method for Stopping Chronic Pain, is – from what I can tell thus far – the Bible of the Egoscue Method.
The second book, Pain Free for Women: The Revolutionary Program for Ending Chronic Pain, is focused specifically on women and grabbed my attention because it also covered women who have had a hyterectomy as well as were struggling with chronic pain. Both of which are issues for me.
Perhaps, in the end, I will never be able to fulfill my dream and run the Boston Marathon, but, if I can run the ME/FMS Marathon and win, I will consider that one of my greatest achievements to date.
Determined to continue forward,