ME Awareness Week 2021: Cherie's story
We are proud to support ME Awareness Week, a time when ME sufferers get an opportunity to tell the world that ME is a real and physical disease. Having battled ME/Chronic Fatigue Syndrome (CFS) since 2018, Cherie opens up about how she has coped while working as an advocate. Here is her story:
“My mother was diagnosed with ME/CFS when I was 6 years old so I had a good understanding of the disease and I believed that I had a good idea of what she experienced on a day to day basis.
In March 2018, I had an ear infection which eventually perforated my ear drum. Whilst the infection cleared with 2 rounds of antibiotics, in the weeks following I began to experience severe fatigue. When I wasn’t working, I was sleeping. Over the next few months my fatigue worsened and I developed severe pain in my joints and muscles. I had various tests but they didn’t show anything. My GP didn’t know what to do next.
I’d thought ME/CFS was only possible after a virus, but a friend had told me about her son who’d had similar experiences. He hadn’t had a virus either but was diagnosed with ME/CFS by an auto-immune specialist. This gave me food for thought and after discussing it with my GP and my mother, I booked a private appointment with a specialist.
Following an in-depth discussion about my symptoms and medical history, and some further tests, I was diagnosed with ME/CFS. That’s one of the difficulties with ME/CFS, there isn’t one test that can be done to diagnose it.
I work as an Advocate for The Advocacy People and with reduced home-working hours in place, I have gradually improved to where I am now. It has been a three year process, and while I still have to return to bed for up to three hours each day after work, this is an improvement from sleeping for up to six hours during the day.
It is worth noting that fatigue caused by ME/CFS is not the same as healthy tiredness but rather exhaustion that causes you to feel unwell and be unable to walk far or climb stairs. It is not relieved by sleep or rest - it can take several days to overcome a couple of hours spent travelling. An inability to walk far and sometimes unable to walk or stand, brain fog, headaches, muscle and joint pain are just some of the numerous excruciating symptoms endured by ME sufferers. The only real way to manage this is by getting sufficient rest to deal with essential tasks. This means that most other things such as a social life fall by the wayside.
There is no cure for ME/CFS and most treatment is private and therefore expensive. Although alternative therapies (acupuncture, homeopathy and massage) can help considerably, depending on the type of therapy, the NHS rarely or never funds them. Anti-depressants are often prescribed but they don’t give any relief from the symptoms of ME/CFS, but rather the poor mental health that can come from having your life derailed. The challenge is getting the NHS to recognise ME/CFS as a condition that requires appropriate healthcare support; ME/CFS has over 91 symptoms and each patient experiences a variation of this. The graded exercise that the NHS promotes as an appropriate treatment has been shown to carry risks.
As an advocate, having a vulnerability helps me to truly understand the needs of your clients better. I have always been empathetic but now I have a better appreciation of how difficult it is to have a disability. Fortunately, I am still able to work part-time while managing the ME/CFS to do so. Many others suffer far worse, even as far as being restricted to a wheelchair or bed.
The NHS is starting to take action to provide treatment for sufferers of Long-Covid, which is in essence actually ME/CFS. I hope this means that the NHS will soon consider providing some treatment options for ME/CFS too.”