Hi everyone,
Happy Friday!
In 2020 Heather shared her health story with HealthUnlocked. We caught up with her one year on to see how she is getting on, and how the pandemic has impacted her journey.
Heather’s 2020 story:
Original post can be found here: healthunlocked.com/latest/p...
"I am a 64-year-old woman of deep faith with a variety of diagnoses including: Chronic Fatigue Syndrome (1994), Fibro (2002), PTSD (2017 - following two suicidal losses) and most recently Pseudo-dementia (2019) related to a lifelong low-grade depression. I have experienced a lifetime of traumas including childhood neglect, the sexual abuse of both of my young sons, two divorces, two suicidal losses and more. It is important that I share those traumas with you as I have learned that the things, I suppressed without a supportive community manifested themselves in my physiology and brain health subsequently affecting my overall wellbeing. The thing is I didn't understand the connection until decades later.
There was a period of time in my early 20's when I was bedridden with exhaustion and that was scary. I didn't have the energy to do anything. My whole body felt as though it was on searing fire on the inside just under my skin. My muscles ached, I was experiencing severe migraines that caused me to scream out in pain and whimper in tears. It was scary because I never understood what was happening within my own body. During this time I was having marital difficulties as my marriage to my children's father had ended and I was unemployed. I was having memory problems and my activities were reduced by almost half.
At the age of 29, life became even scarier as I was experiencing episodes of losing consciousness/blacking out, muscle pains and severe fatigue. Awaking from sleep unrefreshed followed by periods of disorientation, horrendous chest pain.
At the age of 38 in addition to all my other problems, I began having difficulty remembering words when I needed them, memory, concentration. In 1994 at the age of 39, I heard about a doctor who might be able to help me explore what was happening within my body, so I asked my own doctor for a referral. He was reluctant at first but finally sent the referral. The specialist I met with immediately sent me for a Spect scan at Mt. Sinai in Toronto Ontario which came back abnormal I was told but that the abnormality was common to people with Chronic Fatigue Syndrome. I was told little else and ran home to look up what this thing was that I had.
Sixteen years following that diagnosis and having become quite a Resource Detective (a concept I discovered within a course originating out of Stanford University in the States called Take Charge: Living a Healthy Life with a Chronic Illness) by that time I exercised my right under the Freedom of Information Act to get a portion of my medical record from the Ontario Disability Support Program in an effort to understand why they had denied me a disability income after being diagnosed with a brain disorder. I read these words written in a letter between the specialist and my primary care physician that had never been discussed with me. I was seeing it for the first time as I read it 16 years after being diagnosed. He wrote: "Her Spect scan showed findings that are consistent with Chronic Fatigue Syndrome that is mild, global cerebral profusion deficits. She has also minor abnormalities of her immunoglobulins and she also has a positive antinuclear antibody in a titre of 1:160 in a speckled pattern. I don't think this woman has Lupus as sometimes we do see this in patients with CFS. I am not quite sure of its significance. I cannot give you any idea of what is going to happen to this woman in the future. Looking at her life, I find it interesting to note the truism that the same degree of psychological stress will have different effects on different people. She certainly seems to be a person who can take the slings and arrows of fate and work with them. She has a committed spiritual life which appears to be of great value to her in sustaining her through these difficult times. I guess what I am saying is that I do not feel that the diagnosis is simple. It is a complex matter."
Fast forward to 2017 when I am doing an online course through the University of Toronto in Ontario, Canada on Your Brain and The Science of Memory, I asked my Professor about Chronic Fatigue and was given a new piece of the puzzle of my life.
My Professor said: "Chronic Fatigue Syndrome (CFS) is a dysfunction of the mitochondria in each of a person's cells, including their brain cells and neurons. Mitochondria are the cells' powerhouse, the source of cellular ATP energy. In CFS the mitochondria are simply not producing enough ATP to meet all the energy demands of the body. The question isn't what happened to the energy of ATP? The issue is: where is the needed ATP in the first place?" He went on to clarify, "It would therefore come as no surprise that active memory/suppression are compromised and memory and learning disorders may be the result." He encouraged me to exercise to build up the efficiency of the mitochondria to supply a boost of energy when needed including when I am thinking and making memories. I wept as I often do when I stumble across a puzzle piece that helps me understand my experience of life.
At 42 years of age, I was given a Neuropsychological Assessment and more puzzle pieces were discovered. I learned that my difficulty in understanding and processing information was because I had a reduced speed of mental processing one that would reduce cognitive efficiency making employment difficult and it has. It was also noted that I had mild distractibility and deficits related to CFS. Memory tests at this time suggested low-average to average delayed recall of verbal and visual information. And this last line still reverberates in the chambers of my heart, "These scores were also felt to be within expected levels given her measured intellectual abilities." I had it explained to me this year by a former researcher from Duke University that I am intelligent, but that it appears the different lobes of my brain are all working at different speeds. It puzzles me that supports have not given to me with something so serious - I suppose that is why I have become heavily dependent on my faith believing that I am never alone, that God is always there for me guiding me and directing me.
From 42- 64 I continue to struggle with deep memory deficits, concentration and episodes of disorientation/ blackouts/searing pain in my muscles, the occasional severe migraine and unrelenting fatigue. Now leaving all that I have written behind, let me share what has made the difference in my life besides my steadfast faith in God and given me the strength to get up every morning and put one foot in front of the other.
I believe God led me to HealthUnlocked.com communities where I have found a sanctuary of people that I have come to cherish like myself with various struggles who have and share the deepest compassion, hope and strength that I have ever known in my life. The support of these people that I have never met except online has given me the support to take steps in my own journey that I never imagined taking previously because I never had a community of support before. It has made a profound difference in my life despite the ongoing painful struggle that I am in. Within these communities, we hold each other up.
Within the communities of HealthUnlocked.com I have met the most resilient men and women and these communities foster and educate each of us in recognizing our own resilience through the sharing of our stories with one another where we learn that we are not the only one feeling a certain way in a certain circumstance and most importantly there are people in these communities who care about us and what we are going through every day. They are willing to listen to the heartache and to comfort us as best as they can under the circumstances.
If only the world could replicate what HealthUnlocked.com is doing for its many members, the quality of life as we know it would be vastly different in our world and many less would be lost in drugs and despair and dying by suicide or drug overdoses.
Thank you for the opportunity of sharing my life with you."
----
Heather’s 2021 update:
As I write this update, I am nearing the end of my participation in a university course for which I received a $400 scholarship. The course was called Family Engagement in Research. It's been a fascinating experience and lots of work. I have enjoyed working with researchers and doctoral students pursuing my interest in Health Sciences.
As for the pandemic, it took a back seat to the critical health issues of my 40 year old son, Matthew, struggling with a severe and progressive form of Parkinson's. My mental health has suffered and impacted my memory as I grieve his deterioration and loss of mobility. However, I must say I seem to be doing better than I feel.
The most profound lesson through it all has been the recognition of the sacredness of the present moment it's all I really have, (it's all any of us really have) so I've decided to deliberately spend those sacred moments with my son advocating for his medical needs, to continue to enjoy my daily telephone visits with my eldest son, Jon, treasuring my friendships, enjoying my young cat Bella, continuing to write and visit HealthUnlocked communities when I need to process my emotions, to journal, enjoy long walks in the sunshine and maybe even try acrylic painting in the future; to always enjoy a cup of tea and a good book.
---
Heather has given us consent to share her story.
----
Stories on HealthUnlocked have an incredible way of raising awareness around certain conditions, as well as inspiring people who might be in the same situation as you. Would you like to share your health journey? Email me at communications@healthunlocked.com
