New ME Volume 1 No.1

When the Obstacle Course is Your Life: Three Years of Living with Disability

In the beginning, there was consistent trial and error as the obstacle course in front of me was undisclosed. Failure was monumentally an overwhelming daily occurrence, perseverance and acceptance I learned were the keys to this new life. The hurdles were large like that of climbing the steep winding stairs of CN Tower. This is the reality of learning to living with disability and chronic illnesses.

I was in training for the hurdles of life living with myalgic encephalomyelitis (ME) and fibromyalgia (FM). A chocolate sundae, mine was served with extra fudge sauce of conditions with a cherry of disability on top. However, I was coach less. It appears coaches don’t care to work with a person living with so many hurdles, I suppose the challenge is simply too much. I have my opinions which perhaps one day I will share with you. For almost two years I hopelessly was left to navigate the hurdles on my own. Pulling at straws to find treatments, strategies, research and solutions to my continually mounting inabilities and severe limitations.

The simple daily self care practice of dressing, learned as a young child became a monumental hurdle like moving a big boulder, I am reminded of the bear who couldn’t go around it. As a woman I had a stumbling block namely known as the bra. To solve my problem I went braless for a year as I was unable to move my shoulders or arms to put on a bra. I had so much severe pain from undiagnosed Fibromyalgia that it was not possible to wear one and more comfortable going without a bra. Frankly, I didn’t have the energy to give a care about the bra, who it is really meant for anyhow ?

Eventually when I was able to do a bra again I purchased two different types depending on pain levels, after much exhausting research. Both were slip on bras without fasteners made of organic materials gentle on my skin and breathable with wide straps for less constrain on shoulder muscles. Although as a woman with significantly sized breasts it was very liberating and freeing not to wear a contraption originally designed by a Canadian man named Harvey Titslinger for a year.

Pants, trousers, slacks, a garment covering the lower half of the body from waist to ankle. Rethinking pants was never something I thought I would have to assess in midlife. All of a sudden experienced severe difficulty pulling up my pants due to my gross muscle constraints, poor fine motor function and an immediate onset of poor blood flow that was a mystery. Not to mention vital organs, my heart and lungs giving me new and extreme issues on top of all of this. Putting on clothes now was causing severe shortness of breath and an uncontrollable extreme heart rate. I was experiencing POTS or Postural orthostatic tachycardia syndrome which is a condition in which a change from lying to standing causes an increase in heartbeat as well as dizziness. 

However, I didn’t have a coach to guide me through this alarming experience. Good thing for me I taught young kindergarten children independence skills for years giving me many tricks for dressing. Elastic waste band garments were my new friend.

In fact Brandon my husband came up with the idea. Maternity wear pants which I never had need for in my life was the answer to my problems. Experiencing extreme inflammation and severe pain I needed much comfort in what little life I had. Maternity wear pants were my answer, easy to pull on and stretchable for badly inflamed periods including menstruation which is a volume on its own. 

I am familiar with wearing flat footwear, never prone to wearing heels and have studied the foot anatomy and footwear while treating with planter fasciitis many years back. However, I wasn’t prepared for this experience. I could not put on footwear, fit into my shoes due to extreme inflammation. I also couldn’t breath properly when putting them on or bend without experiencing POTS. This was another rather shocking revelation, one that was also extremely disturbing. I went barefoot for a year due to swollen feet and the muscular inability to put on or take off socks and shoes, my husband now put on and took off my socks. And so began the research into footwear that I could put on and take off with ease and I learned that I now required new footwear without fasteners. The hurdles mounted, and I remained coachless. Slip ons it was, I ordered Uggs and Birkenstock clogs to get me through this hurdle of footwear. Kindergarten shoe changing saved me once again, where velcro was mandatory. Can you imagine the former kindergarten teacher can’t put on her footwear ? Is it irony, empathy or just a joke?

In the end of my second year living with disability I was officially diagnosed. That is correct, you did not read it wrong, it took two years to get diagnosed with my conditions and disability. Two years of my life coach less, attempting to blindly live one day at a time. One might say just being diagnosed with all of these conditions is a hurdle, it is. I advocated to be referred to the specialist with a two year wait, one of the only specialists who treat ME in the enormous city of Toronto. If I didn’t advocate for myself, do my own research and find supports from other people living with ME I don’t know where I would be today, but I do know I wouldn’t have been diagnosed by a specialist. Likely, I would be living my life in my bed as so many persons, mostly woman with ME know to be their experience.  However, in truth this is only just the beginning, like lining up at the starting line for an early morning race through the streets of downtown Toronto. 

In life one truly never knows what lies ahead of them. I never thought I would be diagnosed as disabled. This word changed everything for me. I should say I already had a mobility walker, my awesome rollator was purchased as I couldn’t be without a sitting spot, ever. Perhaps, I should have known I was disabled by this simple fact. I don’t define myself by my disability, I am not my disability, it is something I live with. I have lived with environmental allergies since I was born I am not my allergy, as I am not my disabilities. 

However, this disability diagnosis explained so much of the change in my life. It clarified that this was my way forward. It determined that my past was just that and going forward was a new experience of learning how to live life with disability. One of my most challenging daily self care practices was the shower. Sometimes I was not well enough to even think about it. I wasn’t able to lift my arms up to wash my long hair properly. I couldn’t stand for any period of time and I would get completely out of breath showering like putting on shoes. My specialist asked me if I had a shower seat ? I did not. She informed me that I must have one in the shower and I had to be sitting to preform these tasks. Sitting requires less energy for the body and limits issues like poor blood flow. To this day my shower seat is the best mobility aid I have purchased, although I suggest a good quality one with metal fasteners. My original broke which is not safe for anyone. There was one other mobility and that came out this appointment thatbeing a mobility scooter. It was necessary for me if I wanted to get into my neighbourhood. The pandemic hit, I was in quarantine and the mobility scooter was put on hold. 

After my initial diagnosis I was able to begin my journey of healing and recovery. My appointment was a four hour commitment which sent me into a flare for several months, this was the beginning of my realization that due to my disability I needed to remain housebound. The pandemic solidified my realization as it became clear once I stopped trying to save my energy to leave the house I was able to use this energy for some life experiences inside my home. It was at this time I began to practice my painting with a modified process to support living with a disability. 

I stumbled into another flare just when I was getting some routine of my new life practising my art. I require medicine to keep me balanced, regulate many body functions and support my pain protocol. My then GP refused to prescribe a refill of my meds during my quarantine period of the pandemic. My husband spent two months trying to secure refills as I slipped daily back into pain, inflammation and within days a flare. This flare lasted for several months. Life was put on hold once again as a rested and waited for my body to regain energy stores to function once again. 

Now, I am a month out of the flare and functioning within a housebound life once again. I refuse to sign up for any hurdle events in life this year, I am enjoying some hurdle free time. It is my life duty to not succumb to another flare. I will not accept into my life anything which will threaten this. To celebrate the 3rd year anniversary of my new life living with disability, I finally ordered my mobility scooter which is being named. I already conquered a huge hurdle this year with my scooter. I am no longer trapped inside my home, unable to go past my 70 steps to the corner with my Rollator and have the wonderful freedom of independence back in my life. Tune back in for the next volume to find out her name, yes my scooter is a she! 

Myalgic Encephalomyelitis is not new in the world, it mostly happens to women and is shockingly under researched. With my New ME volumes I plan to share my voice in the world as a woman living with ME and disability. In my three years of experience I have learned that most people including doctors do not provide supports needed to those suffering and challenged by ME. Due to disabilities, woman like myself are discriminated against, marginalized and shoved aside. In my family I was the main family provider for many years of my life, my husband and I always support one another in various career endeavours. This has been stripped from me without regard, disrespect has been paramount. It could not be more clear that as a woman with ME I do not matter to my employer, insurance company, government or doctor. I am here to say I have great integrity, I will not be silenced and I have a story to tell. The New ME Volumes are my voice.

About ME, Jane Holden

In 2018 I woke up with a virus, it lives unhealed inside of me. Consequently, I live with ME and disability among many other chronic illnesses. As a woman living with disability I have a story to tell. Many of my experiences are shocking unbelievable, however  I assure you they spoken in truth. The New ME are volumes of my story, with the hope of spreading awareness. My greatest accomplishment for New ME would be to provide light to someone suffering in their darkest days with ME.