Living With Chronic Fatigue Syndrome
Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS), is a condition that affects the immune system and nervous system. It’s believed that 20 million people worldwide suffer from CFS. Since the condition is extremely difficult to diagnose, there could be many more individuals struggling with this debilitating condition.
The most notable symptom of ME/CFS is constant and debilitating fatigue. Some patients describe it as having lead in their body, with very little energy to do even the simplest of tasks. Others have said they feel like they’re constantly hung over. In many cases, patients also suffer from muscle pain, a sore throat, swollen lymph nodes, sound and light sensitivity, cold and heat sensitivity, regular headaches, bruising and vertigo. Due to the condition presenting about 60 different symptoms, it makes it extremely difficult for doctors to pinpoint.
While the actual cause of ME/CFS isn’t properly understood, it has been shown that symptoms appear shortly after an infection, surgery, illness, an accident or physical or emotional trauma. Researchers have also found that there is a genetic link, with the condition being passed down between relatives.
At this stage, there’s no effective treatment method. In most cases, medication and supplements are given to simply help the patient manage the various symptoms. This could include pain medication or supplements that could increase energy levels.
Three Women: Three Stories
The effects of ME/CFS are very real and can change a patient’s life in a dramatic way. Three South African women share their stories on living with this condition.
What has ME done to my life? How has it changed it?
Personally, ME/CFS came at a big cost to my family and me, but I have also gained in unexpected ways.
From a cost point of view, I’ve lost the ability to earn an income, which ruined us financially as I was going to be the main breadwinner and my husband the house husband building websites as a hobby. My husband is an engineer, but by the time my health deteriorated to the point of not being able to work, it was too late for him to get back into the industry as he was almost 60. Month to month financial commitments are a complete nightmare. We still have one child at school and she is very talented, but having a sick mom and the financial and other consequences are very hard on her as well. It breaks my heart as a parent.
I’ve lost my identity to a large extent, and my memory and other cognitive abilities have deteriorated significantly. Physically I have become weak. Getting ME/CFS is like a jail sentence. The time you spend in your cell and how big your cell is depends on how severely ill you are. A cell can be your bed, a room,or your house. Leaving your cell comes at a high price and you risk the chance of a relapse. It is called post exertional malaise.
ME/CFS is also an isolating illness. Telephone calls can be exhausting, so socialising is very difficult if not impossiblle. Going over your energy limit (some call it the number of spoons you have available to use per day) leaves you feeling very ill for a few days, if not longer, after an event. There is no room for doing things on the spur of the moment, etc. People need to understand ME/CFS is a disability, it is just the level thereof that varies. In terms of an ME/CFS disability scale, I am around 50 – 60% disabled.
From a gaining point of view, despite all the heartache and hardship, ME/CFS has enriched my life. I started a support group on Facebook in November of 2012 and over the years saw the dire need of patients for hope, companionship, financial assistance, medical treatment, special care facilities, and basic living necessities. I have come across the most amazing people, very ill and in severe pain, but still very kind and as positive as can be.
Why did I co-found The ME CFS Foundation South Africa NPO? I realised something had to be done and co-founded The ME CFS Foundation South Africa NPO. I found a new purpose in life, one of helping others in the same or worse situation we’re in. I function from home, sometimes on bad days from bed. I always have to religiously stick to my resting schedule and there are still days where I am too ill to do anything. Fortunately there are 3 other co-directors. Each person reached makes all the hard work and sacrifice more than worth it.
In 1979 I was 16...a healthy, active teenager excelling at school and looking forward to further studies. In June of that year, an extremely severe case of glandular fever changed my life forever.
I was hospitalised a number of times and somehow simply never recovered. Nine nightmarish years of searching for answers followed. I went to neurologists, rheumatologists, cardiologists, physicians, endocrinologists, psychiatrists, dieticians, homeopaths, naturopaths...too many to count. Time and again I came up against disbelief and even ridicule.
Only in 1988 did I finally see a neurologist who knew about ME and was able to diagnose me. Unfortunately, I was very, very ill by then. Those 9 'lost' years contributed much to the severity of my ME.
ME has now been part of my life for 37 years. I am 53 and totally housebound. I spend roughly 90% of my day on my bed. I live with never-ending, totally debilitating exhaustion, frightening problems with my brain function, sensory overload because of hypersensitivity to sound, muscle and joint pain, constant and severe burning, neuropathic pain throughout my body and a host of other symptoms.
There are no 'good' days or periods of remission, no relief, never a sense of 'wellbeing' in my body.
Most of what others take for granted have either never been part of my life or have slowly disappeared over time.
I miss having a career, traveling, driving, shopping, going for a walk on the beach, watching television or a movie, reading a book, going out for coffee, going to church, enjoying a meal with family or friends, going on holiday, visits and telephone calls with friends, playing my guitar, the cooking and baking I loved, the needlepoint and sewing I enjoyed doing, playing tennis, swimming, running...there seems to be no end to the things this disease decimates.
On most days I am unable to get dressed, because my pain levels are too high and dressing requires strength I no longer have. As a result of my limitations, social contact has become almost non-existent.
Severe ME just has this way of stripping your life to the bone...
My laptop is on a hospital trolley, which fits over my bed. For the most part, this has become my means of contact with the outside world, my means of communication. But over time, using my laptop has become yet another monumental challenge because of the severity of the exhaustion and the worsening cognitive difficulties.
The financial repercussions of this illness have been devastating. I have never been able to study or work formally. I still live with my parents who are now in their eighties and have been my caregivers since 1979.
Yet, even though this journey has been harder than I can ever express in words, I have encountered precious and enriching gifts hidden along the way. I have been given the opportunity to learn more about dependence on God, faith, grace, hope, courage, love, joy, patience, and perseverance than many others get to learn in a lifetime. I am thankful that I have been given ways to use my pain and struggles to encourage others who are also facing challenges.
And I am thankful that, because of my faith in Christ, my life can be filled with hope and meaning...no matter what a day with ME brings.
In 1990, when I was 16, I began experiencing strange symptoms like poor short-term memory, extreme tiredness and blackouts. I was incredibly lucky to have a GP who was aware of ME and, after running blood tests, he diagnosed me. I almost failed standard 9 as I missed a lot of school, but managed to complete high school.
I went on to a successful career in IT as a usability analyst (IT-speak for someone who designs easy-to-use websites) and ended up working as a consultant, a job I loved. Over the years, I developed more and more symptoms and related conditions (e.g. underactive thyroid, insulin resistance) until eventually, in 2009, I started experiencing debilitating dizziness. By 2011, I was experiencing nausea and sweating whenever I was exposed to artificial light. In 2015, I had also begun to sweat and feel dizzy and nauseous whenever I was upright or using my brain (reading, working on my computer) for more than a few minutes. My ability to work had been on a steady decline from 2009, but by February 2015, I was completely housebound and unable to work.
Because I was a consultant, and not a full-time employee, I wasn’t able to be medically boarded. I had an income protection policy but, because I was diagnosed at 16, ME was excluded as a pre-existing condition and I couldn’t claim. I had to sell my townhouse and everything I owned, and move in with my mother.
Thankfully I have found a doctor who specialises in ME and stays up to date with the latest research, but the visits and the treatment she prescribes are expensive. My medication alone costs a few thousand rands a month, and we often can’t afford to get everything I need. Because the treatment consists of supplements, medical aid doesn’t pay for it. The supplements are prescribed at therapeutic doses, so they’re extremely costly. For example, Mitovive, the supplement that has had the greatest impact on my energy levels, costs over R1,800 for the 2 tubs I need every month.
Between medical expenses and lost earnings, ME has decimated me financially, but that isn’t the only cost. Like many others I have fertility problems caused by ME and can’t have children. Maintaining relationships is difficult when you often have to cancel plans because you aren’t well. So many of the things I used to enjoy, like going to the movies, eating out or going for coffee, dancing and reading, have become difficult or impossible. On a bad day, muscles throughout my body ache, I’m too tired to keep my eyes open, I have difficulty thinking and speaking clearly, just getting up makes me sweat and gasp for air, and I feel dizzy and nauseous. On a good day, I can venture out or work on my computer for an hour or two, at which point I start sweating and feeling dizzy and nauseous, so I have to take a nap.
I try to maintain a positive outlook and my sense of humour, but some days it’s extremely difficult. This is not the life I had planned. I have had to give up on so many dreams and put the rest on hold. I can only hope that it’s temporary.
To read more personal stories, you can visit the ME CFS Foundation South Africa website.