People of HU – Where are they now? - HealthUnlocked Blog

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People of HU – Where are they now?

SaskiaHU profile image
SaskiaHUHealthUnlocked
21 Replies

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."

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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.

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Heather has given us consent to share her story.

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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

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SaskiaHU profile image
SaskiaHU
HealthUnlocked
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21 Replies
jillygirl profile image
jillygirl

Thank you for sharing. :)

jeanjeannie50 profile image
jeanjeannie50

Well done Health Unlocked for the support you gave to Heather. It's so good to hear that's what helped her most and I think everyone on the Atrial Fibrillation forum would agree with her own words as follows:

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.

Those words of Heather's certainly sum up exactly how I feel about the HU site. Just out of interest may I ask who created it?

A big thank you, to all involved in the success of HU, from me too.

Jean

SaskiaHU profile image
SaskiaHUHealthUnlocked in reply tojeanjeannie50

Thank you so much jeanjeannie50 ! HealthUnlocked was founded in 2010 by Jorge Armanet and Dr Matt Jameson Evans.

SusieIM profile image
SusieIM

Love to hear stories of how folks are doing and what has helped them.

ramana42 profile image
ramana42

This lady is the epitome of courage. She faced acute adversity without losing hope. Perhaps her spiritual inclination helped her greatly. The intensity of her post is inspiring, particularly to those afflicted with conditions like diabetes. Hoping that she maintains her courage in times to come.

PNIAuthor60 profile image
PNIAuthor60 in reply toramana42

Thank you for your thoughtful response, ramana42. My spiritual inclination is foundational to my recovery and courage.

suryakaizen profile image
suryakaizen

Dear SaskiaHU, thank you for sharing Heather's story. Please tell her from me that I am deeply touched by her open sharing. I admire her spirit in the face of so many challenges, especially challenges in the form of the problems of her children. We suffer more when our loved ones suffer... My troubles seem small in comparison to Heather's. I am happy to hear that HU (which means all of us!) is a space where she finds support. I am always there for Heather and the HU community.

PNIAuthor60 profile image
PNIAuthor60 in reply tosuryakaizen

Thank you, suryakaizen, for sharing how my story has impacted you. Thank you for understanding how deep my suffering is today witnessing the deterioration in my son with a severe and progressive form of Parkinson's.

Yes, when referring to HU, it does mean all of you - the other resilient souls who trust me with their stories and help me to know that I am not alone in my struggle. Thank you for the offer of always being there for me - it is powerful things like a promise like that which sets this community apart from others out in the world.

GinaD profile image
GinaD

Yes. This is what a community can do!

Phyllis731 profile image
Phyllis731

This reply is for Heather who so bravely has fought and shared her story here. I am a retired psychotherapist who specialized in working with trauma survivors, mostly sexual abuse. In my work in the mental health field, I gradually learned and saw that 90-95% of those coming in for help had some type of trauma history. I also learned about and saw the connection between trauma and physical health...so many with CFS, dissociation, and a host of other inexplicable illnesses. You may want to check out Dr. Bessell Van der Kolk who has presented and written much about this...I believe a notable article is "The Body Keeps The Score." I led many a women's support group over the years for sexual abuse survivors and the kinship they provided each other was outstanding. Obviously, your faith has also played a huge role in your survival. I wish you continued wellness and blessings. Phyllis Spinal-Robinson

PNIAuthor60 profile image
PNIAuthor60 in reply toPhyllis731

Thank you Phylis731 for your response and identifying what your career use to be. Thank you for all that you once did for people like me. I am well acquainted with Dr. Bessell Van der Kolk, have read his text called The Body Keeps The Score, have written to him personally and had him advise me on certain aspects of my recovery.

Thank you so much for specializing in sexual abuse support (both my young sons were sexually abuse in the care of community agencies) - yes, my faith has played a huge role in my survival. It was the very idea that I was seen, heard and loved by God that has changed my physiology. I still suffer with CFS (fatigue and brain fog are the worst) but I continue to pray and believe - I recently found a hoodie for myself that I hope to purchase in July for my birthday - the back of the hoodie reads: SHE THOUGHT SHE COULD - SO SHE DID! The second I read it, I knew it had to be mine.

The work of Peter Levine has also been helpful. I grew up in a vortex of confusion never understanding the world around me because of my traumatic experiences and not even being aware of how I had been impacted. The lens through which I experienced the world and the people in it had been distorted by my experiences and the lack of supportive family. It has taken two decades to get to where I am today and I know I am repeating myself, but the community of HU and my church family have been the most powerful communities in my recovery - simply by accepting me and respecting my journey and helping me to see myself from their perspective with gifts and talents.

I will be forever grateful to HU and its members - you have all forever changed the quality of my life experience.

Gentlespirit profile image
Gentlespirit

Your story resonated with me on a deep level and we share a similar story. It's such a relief and yet also disheartening that you went through so much and yet the mystery solved after so many years. I am you in many ways .

PNIAuthor60 profile image
PNIAuthor60 in reply toGentlespirit

I am so sorry to hear that you have suffered so deeply and struggle with so many things.

Gentlespirit profile image
Gentlespirit

I'm exhausted and feel totally depleted. CFS. Fibromyalgia. Lupus. Parkinsons. I trust my instincts and I've been doing my best to go over everything as thorough ly as possible and I pray that I will have enough strength and tenacity to solve the mystery . Thank you for sharing.

PNIAuthor60 profile image
PNIAuthor60 in reply toGentlespirit

I understand how it feels to be exhausted and feel totally depleted. What sort of support do you have currently in each of these areas? I will be praying for you, too. Let me know if I can be of any help if only to listen or share resources.

If you are praying as indicated, I am confident that the answers for you are ahead for God is guiding you as He did me. Your strength is in the Spirit of the Living God living within you according to the scripture in Zechariah 4:6 where we are encouraged that it is not by might or power but His Spirit that we endure and overcome.

Foundational to your recovery is good self care: eating nutritionally, daily, getting exercise when able as exercise is medicine and is known to slow Parkinson's symptoms. I wish you well and look forward to reading your story of courage in the future!

April is Parkinson's Awareness month - thought to share this with you as a resource

mail.google.com/mail/u/0/#i...

Hi Saskia, this is very uplifting, so very well done Heather and what a testament to you all at HealthUnlocked as this has been a difficult year for everyone so reading such a complimentary success story. So thank you for sharing it and I agree with the others here so very well done all of you at HealthUnlocked.

This shows that we appreciate you and the great communities so thank you.

Wow what a woman to have come through all this, onwards and upwards Heather and god bless you

PNIAuthor60 profile image
PNIAuthor60 in reply to

Thank you, spikie1969, it is because of God's grace, mercy, fathomless love & blessing that I have made it thus far

Gentlespirit profile image
Gentlespirit

I am very happy for you. Keep climbing.

PNIAuthor60 profile image
PNIAuthor60 in reply toGentlespirit

Thanks Gentlespirit!

Hi Saskia, It's so good to read of Heather's progress and it absolutely validates the usefulness of hearing about health journeys. It can give hope to many who are feeling stuck with their conditions and treatment! 👍😊

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