The Puzzle Pieces of How I Lost 20 Pounds Living with M.E. and Disability New ME Volume 2 No.2

It remains a ponderence as to where to start writing. Thus, I would think it best to simply begin and let the words flow. Perhaps I will begin with the hurtful doctors words after contracting a virus which when I was seen by him remained unhealed. He did not know me prior to the initial appointment as I had just moved back to the city and needed a doctor ASAP. What transpired was several appointments with worsening symptoms and a diagnosis of mildly obese. Absolutely a horrific word to use for someone with my undiagnosed conditions. This is the beginning of my unhealed virus puzzle, the place where the pieces are a mess and unsorted.

Prior to this appointment there is a long story which I will give you some knowledge of. I had decades of experience with nutrition as I had life long food allergies, a gluten allergy being the most recent. Subsequently, I spent hours researching food and nutrition, taking courses and arming myself against gluten. So much so, along with the assistance of my husband who has always done all the cooking for us, we created a Blog and Facebook group called The Gluten Gorilla. This was a time when there were very few if any gluten free products and organic foods was a very small selection with expense in the common grocery store. In time, we had developed recipes which eliminated gluten, corn, soy and dairy as these were my main food allergies at the time. Our page was very popular on Facebook as there wasn’t much like it at the time. I also considered taking a holistic nutritionist course part time as it was of great interest and importance in my life. Although it remains dormant here is the link. https://theglutengorilla.blogspot.com/

Now along with a super nutrient dense diet I had a fondness for fitness and exercise, which is lifelong and also something I considered taking a few courses in. Instead, I wrote a blog called Jane Trains sharing my story with tips, experiences and gluten free ideas. I followed a dynamic training program written for me, which evolved in heavy lifting and I was very good at it. I had more natural strength than the average woman and worked with two trainers to see where I could take my body. In my home, I had a professional power rack with Olympic barbells, a hex bar, handweights, a weight bench, jungle gym straps. Outside I had Matilda, my 200 hundred pound tracker tire I used for heavy lifting, pulling and other exercises. You name the strength training exercise I had the training tool for it or/and body weight exercise to complete it. One time I was invited to do a demonstration at Yonge Dundas square with my trainers, such fun. By this time, I was writing my own personal training programs to keep myself best conditioned. In the winter, I used a snow storm to clear heavy loads of snow as a workout, often at 5:30 am prior to navigating a snow storm into work. Once a neighbour told me I should slow down I was so fast at clearing the snow, for me it was a full body workout with cardio. I loved it, one of my favourite winter activities.

Below are some images of the old Jane Trains. Now living with chronic illness and disability these are all exercises I am not of ability to do in anyway shape or form. What they are is a reminder what determination, commitment and patience can produce. Also the characteristics and principles I live by in order to chip away at a monumental task of losing 20 pounds with chronic illness and disability. I proudly share with you the person before the unhealed virus, Jane Trains. Here is my old blog should you feel inclined to check it out. https://janetrains.blogspot.com/

Now back to the mildly obese diagnosis by my new doctor, it was insulting. What actually was happening was my body was inflamed protecting me from the unhealed virus. My blood flow was altered from the virus creating poor circulation. Over this year of time, I developed fibromyalgia which is common with people who are diagnosed with myalgic encephalomylitis. As the year progressed it was harder and harder for me to move, I had POTS which meant my blood pressure was erratic with minimal and sometimes no movement at all. When I moved my heart rate maxed out by simply just getting up or moving from one room to another. I went from chair to chair or bed to chaise and after my specialist appointment as per treatment recommendations sat with my feet up. It was clear that I would not be doing my exercise programs for a very long time and after many months not clear if I ever would be of ability to have movement in my life. Still unboxing my puzzle at this point.

After a year of severe fibromyalgia pain and suffering which I have written about before I was diagnosed and put on medication as treatment. Sadly, it was also at this time I learned that my body simply could not tolerate attending appointments going into several month flares after such an outing. This was M.E. talking and my body trying to warn me that my old ways were no longer within my ability. At this time, I was undiagnosed or treated for M.E. and on an 18 month wait list to see a leading specialist for M.E. at Women’s College Hospital. Thankfully, beginning to treat the fibromyalgia helped with pain. Which helped me to get moving more often in a minimal kind of way, like from chair to chair or one floor to another floor once or twice a day. Treating Fibromyalgia began to work small amounts of inflammation out of my body, nothing drastic. There is no drastic treatment for these type of chronic illnesses.

As time went on I was beginning to attain small gains in movement, nothing visible to others. Given my highly advanced bodily awareness pre and post chronic illness I was able to identify a deep set muscle loosening or feel a twinge or a fibre. These were all signs to me. I regularly used myofacial release therapy techniques provided to me in my physiotherapy sessions as well as a course I took with my therapist to use these treatments regularly at home. This therapy is about softening the muscles throughout the body, it can be used anytime anywhere without anyone ever knowing your practicing the treatment techniques. It is a tool I have used for the full duration of my chronic illness journey and has been paramount in loosening muscles, fibres and joints to develop great range of motion. Something I had in spades prior to the unhealed virus, I am double jointed in a few places and according to my former massage therapist I was extremely flexible with excellent mobility range prior to the unhealed virus. It would appear I have begun to find the corner pieces of my puzzle.

While I awaited my specialist appointment I applied a variety of strategies to create more movement in my day. I should say this is after my fibromyalgia diagnosis and treatment, which is important. The pain treatment plan was highly important in creating more movement. In the beginning, it was about getting up and down. I was so inflamed I had difficulty getting up and down, even off the toilet. So I began applying squat principles in a severely limited way. I focused on using those set of muscles each and every time with as best form as I could given my stone set muscular structure which felt as if I was set in stone.

I couldn’t lift my arms overhead, behind, around the body or underneath which posed much problems for many different reasons. I used myo-fascial therapy techniques to begin softening muscles followed by heat and infra red therapy eventually when it was prescribed as treatment by my specialist. By year three I finally unlocked my neck, shoulders, arms and upper back. By year four I unlocked my hips, pelvis, mid and lower back. My legs and ankles began to deflate and I could once again wear regular shoes. That is right I had to by clogs as my feet were so swollen I couldn’t fit into footwear, nor could I reach anymore to put on shoes, socks or tie up laces.

Once I had more movement within my body I could apply the movement outwardly. I had been using my fitbit for heart rate and step counting all along this process as it was a tool that I used for my regular training practices in the past. I identified max heart rate and max steps numbers, including when numbers when restricted in a flare. Finding how many steps I could take in a day without PEM which is a symptom of M.E.. (very much like doing a hard workout leaving you in rest). Making sure whatever I did never exceeded my max heart rate which can also lead to PEM. I practiced getting up and down each hour or sometimes more if able. Walking around the house, sometimes using the stairs if I needed to go to the washroom. Early in my healing I could not do the stairs without maxing out my heart rate and often had to stop midway and rest. I may be on the road to filling in the edges of my unhealed puzzle now.

As my POTS began to decrease I was able to have more movement in my day, however this happened around year two after my diagnosis and treatment plan. I was also put on another medication for inflammation and pain. Now, I have a new diagnosis Multiple Chemical Sensitivity, that means I don’t tolerate medication well at all. Only a wee bit of meds can send my body into a battle with itself. It took over a month to titerate the meds up to a low dose which I was able to tolerate. This treatment was vital to the next steps of my recovery and healing. I took it at bed along with my CPAP machine for another new diagnosis of severe obstructive sleep apnea, which was my first treatment in my unhealed virus journey. I never miss a night of use as my sleep and brain is better with it.

Treating sleep apnea is also a puzzle piece for weight loss. My sleep was brilliant all my life, I am a great sleeper. Not anymore living with an unhealed virus in me, sleep became horrendous. This can lead to weight gain and treating can help to solve a piece of the weight problem. We must sleep to heal. My treatment plan from my specialist at WCH also included pacing. This treatment technique is the most important treatment strategy I learned in my journey thus far. What it means is for any activity or movement you have equal or more rest, always no matter how small. It allows for the energy system to balance out and for me to see if I have maxed out my energy stores. If I have to, I stop. If I haven’t I will continue on with a task and more pacing to follow.

Building on this treatment strategy over four years time has taken me from my bed or chaise most of the time to moving around the house or garden using pacing throughout a day. It has allowed me to get into my garden where my husband created ten sitting areas for pacing rests, which I wrote a blog on. It also allows me to get into my studio to paint. Pacing while paint dries. Moving around the top floor with a small amount of steps achieving movement. I no longer max out my heart rate when doing the stairs as long as I am not in a low period, PEM or flare.

All along my eating has remained nutrient dense with gluten, soy, dairy and mostly allergy free foods, mostly organic and always homemade. However, two things happened that I didn’t have the pieces to before while doing my unhealed virus puzzle. I was diagnosed by my specialist with histamine intolerance, a big big game changer. I was given a treatment program of histamine low foods as well as daily supplements prior to meals. And just like that, it worked wonders!

And then came the icing on the cake, a diagnosis of Irritable Bowel Syndrome. Well, these foods are common as are many allergen foods. Chick peas, onions, garlic, honey, avocado, sweet potato, oh my!!! When I began treatments after diagnosis my food allergens worked, then in the summer of 2021 the bowels broke loose! I had to move to a strict IBS elimination diet, we never thought my foods could be so restricted. Food allergies, histamine intolerance and now IBS foods all eliminated. An elimination diet with supplement before each meal much like in treating histamine intolerance is a homerun, my bowels and small intestine became happy fast! I am currently still re-challenging my IBS foods but I am learning I can tolerate a small amount of each of the food categories as long as I take my supplement.

Now this brings me to the weight loss. It is realistic for me to loose a pound a month if I am of ability to have regulated movement with pacing. By loosening and strengthening my muscles I have been of ability to hold and carry more things which equates to lifestyle strength conditioning. By using my finger muscles to paint I am able to carry objects with minimal weight again. Once I had all this in place I was of the ability with pacing to do movement again. Following Allison Bested treatment strategies prescribed as treatment by my specialist at WCH I was able to loosely begin a recommended strength training program as well as a walking cardio program with mobility aids, both with pacing. It continues to be random as it is based on pacing. Now I am beginning to work on filling in my puzzle, but it is big and all the colour values similar. It won’t be easy.

Furthermore, by adhering to a gluten, dairy and allergen free diet, with low histamine foods and small amounts of IBS food categories the weight really began to come off. I have already sent Brandon out with two big bags of donation clothes that I used at various points in my healing journey that are way too big. At the beginning of my journey a doctor whom had treated me for a decade of time told me the inflammation will come off when your body feels no threat. Although I live with an unhealed virus in me, my undiagnosed histamine intolerance and irritable bowel syndrome was a real and present danger to my body. Such a threat it required equal weight of two bags of potatoes to protect my body. That is 20 pounds of potatoes for those that have not heard the analogy before. Truly, I can’t tell where I am in my puzzle but it is moving forward and getting filled in. I have no timeline, it will simply happen in time.

We are all different. We all have different experiences and journeys. What works for me is what my body needs. Remember we change. An unhealed virus can change much. If we learn to listen to our bodies and become aware there is much we can do to move forward and heal, even if no one else can see it. I have lost 20 pounds and about 20 inches of inflammation around my body. I always listen to my body and do what it asks of me. This has been my true story of a hurtful diagnosis of being mildly obese and how I lost 20 pounds with chronic illness and disability. In fact, just last night I noticed another inch of change. I am beginning to see in the mirror a resemblance of my muscular yet hour glass figure once again. I love seeing these images of Jane Trains now and wonder how much of my old body I will be of ability to bring back. Oh my unhealed virus puzzle is constantly becoming more completed. Perhaps one day I may even finish it.