We have recently celebrated the Thanksgiving Holiday here in Canada which is a time to reflect on the things we are thankful for.  While I wasn't able to cook the traditional Thanksgiving Dinner for my family (which consists of turkey, stuffing, potatoes, gravy and pumpkin pies), I was thankful we were able to go out together as a family to a restaurant.  I also took some time to reflect on other things I am grateful for. 

Here is my list of things I am thankful for:

1)  For an early diagnosis.  It only 10 months. In the world of M.E., this is a very quick diagnosis as many go years or decades, unable to receive any diagnosis.   

2)    To receive a diagnosis.   At the time, I didn't think expecting a doctor to offer a diagnosis was expecting too much.  One gets sick, they go to the Dr. and the Dr. tells them what is wrong with them.  That's not the case with M.E. though.  Many times, people actually go backwards as their doctors don't even believe they are sick.  They are told it's all in their heads and then given advice to do things which will not help them and quite often make them more ill. Hearing these reports, as well as my own experiences with doctors since my initial diagnosis,  I now realize receiving a diagnosis is a major accomplishment.

3) For a Dr. who believed M.E. is a real illness, had extensive knowledge about it but also be one of the top M.E. specialists in our country. He not only got it, believed in it but has written about it.

4)  To live in Canada where universal healthcare enabled me to visit so many doctors, specialists and have so many tests done, all at no cost to me and no 'questions' or disputes from insurance companies on whether these tests and/or specialists were necessary.  When one doctor needed a test completed or for me to see a certain specialist a requisition was all I needed and off I went.

5) My on-line M.E. groups and friends who, unfortunately, also suffer from this dreadful disease.  They willingly share info, what has worked for them, what hasn't and have suggestions of things to try.  Sharing this info is nice of anyone, but when one has the debilitating fatigue and other issues of M.E., using your already limited energies to help others is exceptional.

6)  The friendships I've made.

7)  Dr. Sarah Myhill, her work with M.E., the M.E. community and the info she shares on her site.  When I fist became ill with M.E./CFS, an on-line acquaintance pointed me in the direction of Dr. Myhill's site and it was invaluable.  Her information and suggestions were a large contribution to the improvements I have made over my journey.

8) A supportive family.  Without my husband and children believing in me, supporting me and generally picking up the slack, I would not have been able to make the improvements I have.  They gave me the time to rest, to research and implement various things.  They supported me through the things that didn't work and rejoiced at the ones that did -- no matter how small the improvement.  

9)  The improvements I have made.  I am at 50 - 60% of my pre-illness state but considering I was at around 2% when M.E. first hit, I've made considerable improvement.

10)  The other positive life-style changes I've had to make. 

      It is easy to focus on all this illness takes from us -- and lets' be crystal clear, it does rob us of a lot -- however shifting our focus can be very helpful.     

​         What are some things you are thankful for?

                         Shifting focus to remain

                                    Balanced....despite the chaos!
​

     Most medical conditions are improved with exercise.    Unfortunately, this is NOT the case with ME/CFS.  I know there are so-called studies "proving" it works with ME/CFS as well, but ask anyone with ME/CFS who has tried this and they will quickly tell you the reality of it.  

     Over the years many treatments for various illnesses, have been highly  regarded as effective only to be discredited, in a major way, later on.  Things like bloodletting for fevers (sometimes with the use of leeches), lobotomies in the treatment of mental illness or mercury for pretty much anything that ailed you, come to mind.  How about  these ones promoting smoking? Yikes! 

     Yes, all of these treatments once highly esteemed in their day were later proven to be detrimental and today, well, it's hard to even imagine they were a thing.

     Excercise with ME/CFS belongs in that list as well.  Hopefully, one day soon, it will be.  We can always hope!  

      Now, we do know exercise is good for our bodies and that it improves most conditions.  We're not lazy and we're not looking for a way out from doing things.   We want to be active.  Most of us were very active before getting ME/CFS and long for the days we are able to do so again.  There is a big difference between wanting to and being able to.  Unfortunately, many of us have personal experience learning this difference and we learned it the hard way.

   We were advised by the medical professionals we trusted, to exercise our way back to health. The old adage, exercising each day as well as increasing the amount each day, will build up one's tolerance.   We listened to this advice and were left with detrimental, permanent damage.    

      To put it into another perspective, we don't tell diabetics to increase their tolerance to sugar by increasing their intake of it each day.  Start with eating 1/2 cup today, 3/4 cup tomorrow, then one full cup the next day and so on.   This will eventually enable you to tolerate sugar and *POOF* your diabetes will be gone.

       Sounds silly, doesn't it?

      How about telling a person with a newly broken leg, to "run it off"?  Run a little bit further each day, building up tolerance until  *Poof* the fracture is gone and the leg is broken no more!

       Sounds equally as silly!

      These suggestions are not only absurd, but would cause further damage.  Instead, for the diabetic, changes in diet and allowances in activities are advised in order to accommodate the changes in the way the body now functions.  

       Same with the broken leg.  The fracture must heal first before exercise can make it stronger.  

        This is equally as true with ME/CFS as well.  

       Before ME/CFS, I was very active.  I had three, young, energetic children.  We owned a large home with large grounds requiring a lot of work.  I loved being active. I enjoyed swimming and walking.  I walked every night before bed throughout each of my pregnancies.  During other times, I walked at least 5 kms per day, every day.  I loved the way it made me feel.  

      The Dr. advised me to start exercising, increasing each day.  Since walking was what my body had been used of and it had worked so well for me, I decided this is the type of exercise I would participate in, to bring my health back.  I planned on easing back into it, starting with only a small portion of what I had been used of.  

        I chose an indoor walking track seeing as it was winter.  

        I started off slowly.  I walked, rested, walked, rested and so on until I had done a couple of laps.  After my second lap, I sat for a bit before moving on to  my third.  As these three laps were a fraction of what I had been used of walking, the pace I kept was much slower than my usual was and I'd also incorporated frequent rests, I figured I was off to a great start.

      Toward the end of my third lap though, I became very weak and shaky.  I was barely able to make it to the chair so I could sit down.  I was light-headed. Things became dark and I was experiencing overwhelming weakness.  One step at a time and a lot of concentration needed just to put one foot in front of the other.  I constantly felt like I was about to pass out and I had to continually fight against allowing this to happen.  Even though we lived close by, it seemed to take an eternity to get home. One.foot.in.front.of.the.other. became my self pep-talk while I continued to be shaky and fight to not pass out.    When I finally arrived home, the last thing I remember was collapsing into my bed.

     I do not have much memory of the three days which followed that episode.  A blur at best.   My husband reports my breathing became very shallow, almost not there.  At one point, he wondered if I was still breathing and considered calling an ambulance.  He was gently shaking me and loudly calling my name.  He could not wake me, so I slept in my clothes all night.  To this day, I have no recollection of this event.     

     In the morning, the alarm played for 15 minutes before I sort of heard it, way off in the distance (I was usually a very light sleeper).  Exactly like when one comes out of anesthetic -- I just could not bring myself up from that ultra thick, moisutre-ladened, pea soup-like fog.  When I finally managed to open my eyes, it felt like my early days with ME/CFS.  Weak, so very weak.  Flu-like only times 10.  Swollen lymph nodes, achy limbs and body, feverish and wide-spread pain like I had never experienced before.

      Deep-seated, throbbing, bone pain.  All my limbs felt like cement blocks.  In addition, there was pain which felt like a bad sunburn. Excruciating sunburn on every inch of my skin of my whole body.  To top it off,  every inch of my body felt like it was being stabbed with millions and millions of pin pricks.    

     It was horrible and unbearable.  I could not get comfortable.  It hurt to move.  It hurt to be still.   I needed help to walk to the bathroom and when there was nobody around to help me, I had to crawl along the floor.  Oh the pain.  

      There was so much pain, I was unsure if I could make it to the Dr.  I hoped it would go away on its own, similar to a sprained ankle does with rest.  It didn't help unfortunately and after a month of being in bed, i knew  I needed to see a Dr.  

       I hoped it would be a quick fix -- take this pill or rest for this long and you will be fine kind of thing.  It wasn't an easy fix though and after examining me, I was very disappointed when he told me I now had fibromyalgia.  

       I was completely shocked I had this reaction to exercise.   How could this happen?  I was used of walking, the doctor had advised me to do this, so what went wrong?  

      Back to the research table I went (aka my computer) and without much looking, it became clear others had experienced similar reactions to exercise.   

      Why wasn't I told this?  Why did doctors who were there to help me feel better, tell me to do something that made me worse?  I trusted them. As I continued to read, it became apparent this happens a lot and I was far from the only one.  Many get this same advice and then suffer ill effects from it, just as I had.  It's bad enough to be so ill from ME/CFS, why are we making people worse?

     Enough already. It really is time for this junk advice to stop.  Please move forward with proper research and accurate studies.  Let's find a cause and a cure for ME/CFS once and for all.

                  Moving forward to help keep the 

                                  Balance.....despite the chaos!