Body and mind:The healing process.

One year ago I made a plan. It was a plan for my body. No one gave me PT or any idea on what I should do with my body after the muscle disease diagnosis. I was just told, “No treatment, no cure.” That was 10 years ago. I was also told if I did too much activity it could damage my muscles and if I did too little activity my muscles would atrophy. With no guidance I devised my own plan. I gave myself a year to complete my plan. A year is a long wait to meet a goal but it was a realistic plan. I wrapped up my knees and started the goal. 

I started with one room. I knew my arms needed to stay close to my body or they would get sore and my legs needed to make small movements. What better PT than actually getting something accomplished in the house. I would swiffer one room. The next day I would swiffer another room. By the end of the week I would have swiffered the entire house. This plan didn’t work. I needed days in the middle to recover. So I altered that plan and did one room every third day. After a few months I was able to get the full house done in a week. I moved on to sweeping. That took more full body movement. So I would sweep one room. Then I continued with the same plan until I had swept the entire house. Next I encorporated the swiffering. I’d sweep the entire house and then swiffer one room. Then I’d add a room. By the end of about 6 months I was able to sweep and swiffer the entire house in one day. I built up some strength. It was slow, but steady. During that time I tried some different things, I tried to vacuum but that was an epic fail. I couldn’t stretch my arm out or pull with any resistance like a vacuum. So that got scratched as it caused too much pain and recovery time. After, I was able to sweep and swiffer the house in a day and gave myself 2 days of recovery, so  I added in dusting. ( I call it un-dusting because I find the word dusting to make no sense what-so-ever). So I’d un-dust a room. Then I’d add in a ceiling fan. That caused my shoulder to burn because of the reaching so after much consideration I figured I could do the fans one day every other month when I had a week to rest after. And this is how my plan unfolded. I wanted to, after a year, be able to, in one week, have the house un-dusted, swept and swiffered. And I did it. It was a huge accomplishment that only I could really appreciate. Only I could appreciate it because it was a goal I made, for me, and went through the daily ups and downs until I reached this goal. 

I never thought my body could do it. I had given up on trying new things and accepted that this was the end of the road for my body because that is what I was told. I didn’t listen. I gave my body a year goal and I accomplished it! It was not without many stumbling blocks, frustrations, pain, and feeling defeated. But I didn’t stop. Which led to my next goal of trying to drive again. 

Ah the seriousness of it all!!! My daughter’s hilarious reaction!!!!

The first drive took 2 weeks to recover from. No house cleaning was done after that. This trip we were happy! Yay ! Driving again!!!

Driving consisted of me starting the car, being able to put the car in gear and then actually turn the steering wheel. It was a driveway drive. 

I never thought I would sit in the front seat of a car and turn it on. But I did. My arms hurt for weeks just turning it to go down our driveway. But I did it. 

Then we went to the Mayo clinic. I thought, if I can swiffer a house, I can walk on a beach!!!!!

This was me at the Mayo clinic, then my celebration at the beach. I just noticed my footprints in the sand. I never thought I would ever see my footprint in the sand again. I needed help of course. My husband carried me through the soft sand. But I walked down to the water by myself. It was not without consequence. It hurt to move for days after. But victory is not always without struggle and even pain. I would say that even though I had pain, that walk on the beach was one victorious day. 

I don’t know what will happen to me with my muscle disease. I have no idea when my knees or joints or muscles or bones will just be done. But it will not be said that I went down without a fight, or that I just gave up. 

Which leads me to why I started writing this tonight: I went to therapy today and it was hard. Therapy was devastatingly painful. I have So very much to overcome and I have just begun. I was so frustrated after therapy thinking, how will I ever overcome these things that have happened to me and the damage, and holes it has left in my very being. How? 

It may take time. It may take a year doing one thing at a time. I added a room of swiffering a week and I will add an emotion or a trauma a week. If my Lyme disease, muscle disease, bone disease, body, can go from doing nothing to cleaning a house in one year then I think it is a realistic goal to give my mind time to heal too. It will take time. I don’t know how much time yet and haven’t set an actual time limit goal but I am taking the steps and doing the work. I may need to throw in an extra year of healing just to make it an attainable goal. The point is, I didn’t give up on my body and I am not giving up on the parts of me damaged by trauma. It may be painful, and frustrating, but I am moving forward, and I won’t go down without a fight. 

9 thoughts on “Body and mind:The healing process.

    • Of course not!!! I went to the Mayo clinic 10 years ago. I had a muscle biopsy done. Based on the biopsy they diagnosed me with Central Core Disease. But I don’t fit the symptoms of the disease. So I did my own research and found a doctor who specialized in the disease in England. I contacted him and asked if he would review my biopsy and I had it sent to him. He said, based on its appearance it looked like other biopsies with the same diagnosis but had one thing that differed. My type 2 muscle fibers were atrophied. That was abnormal for the disease. So he asked me to send a blood sample overseas to see if I tested for the known mutation, it’s called RyR1 mutation that caused the disease. I ended up testing negatively. So he got in contact with the NIH which is in the US and asked if I could be part of a study. They entered my blood into a study that looked for 66 known rare mutations that could cause what I have. They found nothing. SOOOO apparently I have this rare disease based on the biopsy but nothing can be found in my blood that indicates what caused it and my symptoms are very different than what you see if you look it up. “It’s a mystery” I have heard hundreds of times. That was probably more info than you needed 🙂


      • No, not more than I needed. Sounds unfortunately similar to my medical journey, just with a different diagnosis. I spent years with a multitude of symptoms and being called a mystery, or faker, or hypochondriac, or psychosomatic. I finally resigned myself to the fact that I was just going to have to live with what I had without knowing what it was. I knew it wasn’t going to kill me, so I just stopped complaining about it to the doctors. After awhile, I was researching online and found a doctor in Minnesota (I’m in Massachusetts) who had written an article that exactly described me! I wrote to him and he wrote back, saying it did indeed sound like I had the syndrome that he’s famous for being an expert in (Mast Cell Activation Syndrome) and with his letter, I was able to get to a specialist here in Mass who finally gave me the diagnosis. As that was going on, I, on my own, contacted a geneticist for other symptoms I had that weren’t related to the Mast Cell disorder. I am currently being worked up for Ehlers Danlos Syndrome…a connective tissue disorder. Both disorders are rare enough that I have to explain them to all of my regular doctors, and both are very difficult to diagnose. So, long story short…I feel your pain.


      • I was diagnosed with multiple chemical sensitivities which they thought could be mast cell activation disorder but since ONE test was negative they ruled it out without any further thought. I STILL think it is why I have such severe reactions. I know about the other disorder too. I am so so glad you have a doctor working these up for you!!!!


      • Well, I had THREE negative rounds of tryptase tests and one negative 24 hour urine test before I got the diagnosis. I just saw your post on the chemical sensitivities and instantly wondered if you had MCAS. With the weird muscle thing, it just makes sense. You appear to be a zebra, if you know what I mean.


  1. It’s 1:20AM in London and I’ve just returned from work, feeling the slight hint of a cold coming on, nonetheless, I just had to finish your story before turning in. It’s wonderful to read the progress you’ve made after going through such an ordeal, and so, for the sake of people who are suffering from some terrible chronic condition, I hope you continue your writing. A small part of your story actually reminded me of the famous “Footprints in the sand” song/poem which has been an inspiration to many. Needless to write I enjoyed the article.


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