Basic Stuff

• Name: Suzie B
• Country: Canada
• State: British Columbia
• City: Vancouver
• Gender: Female
• Age: 71
• Education: Masters Degree
• Primary Illness: Chronic fatigue syndrome/myalgic encephalomyelitis (ME/CFS)
• Diagnosis:
  • Chronic Fatigue Syndrome (ME/CFS)
  • Mast Cell Activation Syndrome (MCAS)
  • Dysautonomia , Stage 4 Lymphoma
• Year Illness Began: 2019

Functioning Interrupted

Most Impactful Loss

Not being able to travel, no freedom to go anywhere, trapped in one room. Rarely seeing family.

My Story

I developed ME after my first chemotherapy, immunotherapy treatment and radiotherapy for stage 4 lymphoma. My body didn’t respond well and I had an acute toxic reaction. I was in hospital for a week as I couldn’t lift my head off the pillow without fainting. Gradually I felt a little stronger and several weeks later I resumed radiation therapy as I had a large lymphoma tumour wrapped around my thoracic spine pressing on my spinal cord.

I also had another immunotherapy treatment to try and shrink all my tumours. I continued to feel very sick; very nauseous, fatigued, and developed peripheral neuropathy in my hands and feet.

My oncologist stopped my treatments and I tried to recover. I had developed chronic pain around the thoracic tumour site where it had damaged nerves and tissue which is treated with Methadone and Gabapentin.

Over several months I gradually got stronger and started walking again daily. As I increased my daily walks I became more fatigued, breathless and very faint if I stood for long. I was diagnosed with dysautonomia, bradycardia and central sleep apnea and had a pacemaker inserted.

This was all during the pandemic so medical treatment was difficult and as my oncologist had never seen anything like my problems before, was very puzzled. I was put on the waiting list for the Complex Diseases clinic which was 2-3 years. I had zoom meetings with a neurologist who was very dismissive and finally suggested a psychiatrist as he felt I hadn’t accepted my cancer diagnosis!

I was deteriorating, bedridden and needed home nurse support. My neurological symptoms increased significantly and I developed tremors, poor balance, and was falling. Eventually my family doctor got me to see a Movement Neurologist as they thought it was Parkinson Disease. She called it a Functional Neurology disorder, in other words she said things were wrong but it wasn’t Parkinson’s.

Finally, last year I had a zoom appointment with the one doctor in the Province who treated ME patients, who quickly diagnosed me with ME and MCAS. He also thought that I had a progressive form of ME as my symptoms, especially the neurological problems, continued to worsen. I had to be very careful about pacing and gradually with aggressive resting, I started to get more stable.

I’ve tried endless supplements and other treatments suggested by the ME doctor and ME patient forums. I can’t use the low dose Naltrexone because I am on Methadone for my chronic thoracic pain. I have tried low dose Abilify and Metformin with no success. Low dose Clonadine has helped me with my night sweats and cannabis and Benedryl helps me sleep. Loratadine and Famotidine help my MCAS.

I have an electric wheelchair so I can outside occasionally and have a meal delivery service as I don’t have the energy to cook. I have lost my much loved film production career which allowed me to travel the world filming. I’m struggling to try and keep up with my artistic passion for painting and creating fibre works but I can’t hold brushes in my right hand .

Gradually I have managed to do a little painting with large brushes in my left hand for short times sitting on a stool. When I sell a painting I donate 20% to cancer and ME research.

I have a very small life, hardly seeing my family or friends as I just don’t have the energy but I try to stay positive and continue to create when I can. I try to gently push my energy envelope so I can do more things and see my family more but it’s not working out well. I keep “crashing “ so I’m just trying to live a very small life.

I hate what this disease costs us and how people don’t understand it and how the medical community doesn’t seem to care. It’s hard for family and friends to understand a disease that’s so hidden as we look well yet feel so terrible!

Sorry for my long winded response but at least here people understand.
Thanks.