Today, Thursday 12th May is International ME/CFS Awareness Day and National FMS Awareness Day, an opportunity to raise awareness for these very real and debilitating conditions that affect millions of people around the World.
The Isle of Wight have around 550 residents living with ME/CFS and at the end of last week we heard from Ted Higgins, someone keen to highlight these conditions due to his experience of a family member being struck down with ME at an early age, recovering, and then relapsing in later life.
Katina’s story
Another Isle of Wight resident with real world experience of ME/CFS is Katina Hockney.
Katina has very kindly agreed to share her story after she started experiencing the symptoms of ME 22 years ago, at the age of 44.
She told News OnTheWight,
“I lost ‘me’, the person I was before this condition took me over.”
ME resulted in losing her career in teaching, her independence and the ability to enjoy many hobbies.
Frustration for doctors and patients
Katina explained,
“After ‘coping’, ‘suffering ‘, ‘questioning’, and ‘existing’ with this cruel, debilitating and often invisible dis-ease, it is long overdue that we, the patients, get the recognition, the possibility of treatment and prognosis that offers some hope of recovery to get our lives back, that we so much deserve.
“We have no proper quality of life.”
She went on to say,
“It is the ripple effect once the stone has fallen into the water, others also suffer, unable to help, friends and family are left confused as often we don’t look unwell.
“Doctors feel helpless and frustrated too as our bloods often come back normal, although there are elevated ESR/CRP- inflammatory markers, indicating inflammation in the body, but with no guidance as to why or where, so what do they treat? Pain relief.
Pain: Multifaceted, emotional, physical and mental
The pain experienced by those with ME/CFS/FMS can be hard to explain to others who have not been through the same.
The importance of being proactive and understanding the condition was clear to me when I started experiencing symptoms of FMS over 20 years ago. Much of what Katina has articulately shared with us, I can relate very easily to. She explained,
“Pain is multifaceted, emotional, physical and mental. The emotional pain suffered has been immense due to too many false dawns. What often appears to be straightforward, is a complex problem that requires a complex solution, hence the need for research.
“Fortunately after many years I have now developed a supportive relationship with my GP, as both our understandings of the complexity and limitations of this condition have grown. I respect his frustration of lack of diagnosis, treatment and prognosis.
“I have read many papers over the years on Google Scholar (brain fog permitting) and I am now aware not to inadvertently project myself as a pseudo-medic. There is no room for guilt, acceptance is a huge factor in coping with daily challenges.”
Crippling fatigue
However, pain is just one part of the myriad of symptoms experienced by those with ME/CFS/FMS.
Katina added,
“The fatigue is like nothing felt before, not tiredness when you’ve run a marathon, although one wakes each morning feeling like you have!
“Tiredness at the end of a day? No, true fatigue that renders one helpless. If you haven’t got your energy, you have nothing.
“Daily activities that most take for granted, ie; dressing, showering, a walk in the sunshine, a visit to a shop, closing your front door behind you alone, all these and many more, become extremely challenging/impossible.”
The problem lies with mitochondria
The most popular view from scientists has been that the problem lies with mitochondria. These are the power cells of our body.
Every cell in our body has around 2,000 mitochondria (except red blood cells) and the human body has 37.2 trillion cells. So when you learn that patients with ME/CFS have massively depleted mitochondria you can start to understand just how the fatigue affects them.
Katina explains
“We all have an internal battery, for instance, energy is replenished once used after a night’s sleep.
“With ME the energy is not replenished, it is gone, lost, forcing bedrest until one can get up again. This is a completely unknown entity, it may be a day, a week, sometimes a month, depending on what type of activity was attempted.
“It may have been an outing, being taken to visit the seashore, nothing strenuous, yet the body’s energy is lost.”
Correlation with Long Covid
For many decades it has been understood that symptoms of ME/CFS/FMS follow bacterial/viral load, so some patients are hopeful that as Long Covid emulates those symptoms, research into treatment and cures will be prioritised by the Government and properly funded.
Katina said,
“Patients have been left to cope without proper diagnosis, no treatment, nor prognosis often resulting in reactive depression.
“Pain, widespread body and bone pain is horrendous and can severely affect one’s mood. Anti depressants have been offered in the past to patients as the medical profession once thought ME was a form of depressive/mental illness.
“GET – graded exercise therapy – now no longer offered as treatment, harmed more than it helped, often rendering patients completely bedbound as they forced their bodies beyond its capabilities, I was one whom this affected.”
She finished by saying,
“For 22 yearsI have tried everything I know to heal my body from this nightmare of a condition.
“On behalf of everyone on the Isle of Wight I plead that something now be done for those of us who greet each dawn like groundhog day, who put up with severe pain, brain fog, fatigue, noise, light and chemical sensitivity, food sensitivity, inability to regulate temperature, loss of independence and no hope for the future.”
You can find about more about ME/CFS/FMS Awareness Day 2022 by visiting the Website.
‘Life Is A Jigsaw’
Katina also shared this poem written some time ago with her condition in mind.
Our life is one jigsaw …
An image of being all together on a glossy exterior
Until the negative falls into many pieces – scattering our senses in different directions.Emotions stirred – blank side up,
Frayed at the edges,
Fragments of what once we held intact.We can pick up the pieces,
Hoping that the rough edges fit together – somehow,
Even make our own jigsaw,
Create our own scene…
Then leave it sealed firmly under wraps.
But you don’t look sick
ME sufferer, Shantel Palmer, created this artwork below that many with ME/CFS/FMS will be able to relate to. See her other work on her social media page.
Image: Used for illustrative purposes by Andrea Piacquadio under CC BY 2.0
