by Mary Delaney – Published January 10, 2023

When I decided to write my story to include on FAC’s website, I was a much abler typist.  As are many of us, our problems don’t finish with only fibromyalgia,  but can be joined with other unpleasant diseases, such as arthritis, IBS, Lupus.  I have a newly diagnosed  additional disease, called Essential Tremour.  Earlier on, it was easy to ignore the tremours, but now they impair my manual dexterity.    

I’ve read all of  the members’ fibromyalgia stories so far presented.   My  life mirrors many of the life experiences, traumas and symptoms noted by the writers.

My take on my FM onset starts with a virus I got at a camping event (I wonder sometimes if it was Lyme).  I had to take time off work as I was sick and  desperately tired, so much I would suddenly have to sit down (1996).   I used naturopathic methods to support my body’s healing, dietary changes,   I went back to work, for half days and then transitioned to full time.  I started studying Tai Chi to get me more active and healthy.  It’s been very good for me to stay stronger than I would have without it over the years.

Prior to my diagnosis, on many weekends, I would attempt my regular home upkeep, repairs, maintenance and gardening.  Frequently the next day was  spent on the  couch in pain and tired.  For several years I had intermittently occurring all over body pain episodes. 

Around 2010 I started having problems with my feet, a lot of pain.  Over the years the pain increased in severity and length of time.   Another piece to the puzzle was a gynaecological surgery in Spring of 2013.  Later in 2013, pain became extremely harsh.  I could not get to work as a result.

As my doctor was away for many days, I packed a lunch and took a taxi to the Emergency Room.  The intern doctor was helpful, hooking me up with the Home Care folks.  He asked me what he could do for me, I told him that I would love to see a doctor who might be able to figure out the problems I was having.  He got me an appointment with an Orthopaedic Surgeon who examined me briefly and made some important comments which I reported to my own Family Doctor.  The practitioners there were amazed I had  snagged an appointment with a really reknowned orthopaedic surgeon.  My family doctor said she thought it was fibromyalgia.  The various pains and sensations I had were myriad, painful and wandering, which was an important aspect to aid in diagnosis.

I took a long term sick leave and eventually transitioned to medical disability insured leave.  Then onto retirement, 7 years earlier than I had intended.

The onset of fibromyalgia brought with it many losses.  I had to sell my house as I could barely get up and down the stairs.  I was using a walker kept on each floor of the house.  I sold my house quickly and moved.  The losses piled up:  my house, my career, my planned retirement lifestyle, my social life, incapacitated in so many ways.  I can hardly walk.  I use a cane, a walker or my car.  No more hiking, beach days, camping vacations, travel to distant lands and so on.  I was planning a second career in adult education upon retirement.  Now, I have to choose between having a shower or cooking some dinner.  Showers are incredibly exhausting.

There are hundreds of side bar aspects I could write about here, but the one tinged most with positivity, is the learning in my experiences.  What I mean is,  to be the one in the wheelchair, or in the situation where vital information is necessary  for me to decide whether to attend an event.  Or knowing my best answer is to decline an invitation.  Even more so, I believe I am less likely to judge others, as I know now that people come to you from where they are.  We are all different, we all have unique needs.  Kindness counts.

Noticing how others treat me allows me to more accurately and keenly determine their empathy.

I have been the recipient of some fairly cruel comments about fibromyalgia.   I notice others quickly turn to gaslighting me when discussing my disease.  For example exploring that perhaps my medications are the cause of my symptoms.   If they dismiss other concerns and needs and appear not to care, that is a very important aspect of human functioning.   It is a narcissistic trait, and the earlier you  figure out you are dealing with one, the better able we are to run the other direction.  They do seem to be everywhere, narcissistic people , lacking empathy and emotions.  

Nowadays, my cat and I lead a quiet, peaceful life in an accessible environment.  I pace my activities, resting in between various activities, or in the middle of one!  I enjoy activities in an online support group regularly, get out grocery shopping, to Tai Chi class and socialize with a minimal number of friends.  I zealously avoid social events that seem virally risky.  I am trying to appreciate the moments of my life, and make my experiences as joyful as possible.

Disability is a new world.  It has its’ own rules, assumptions, prejudices and perceptions.  I have received the help I need from many sources, often from strangers or people encountered along my path.  In my new disabled life, I adapt to my new reality, think carefully about what I am capable of and fill my world with things and people that matter.

I am thankful for the medications that aid me to get through my days.  I pace my activities so I don’t become over-tired and land in a lengthy bed-rest type of flare.  Mild exercise seems to be my best bet, so I try to get some in a few times per week.  I wish things were different, but that doesn’t make it so.  Feeling content with how things are is better for me than railing against what I did not choose.  I try to bring awareness to fibromyalgia and know we have work to do to bring understanding to both the medical community and society at large.

Thanks for reading my story I hope it helps.

Mary Delaney