Myalgic encephalomyelitis (ME/CFS) was first mentioned to me when I was at the spinal clinic at my local hospital. I got angry because I didn’t want a diagnosis of ME/CFS, I felt I was being dismissed with an untreatable illness that has a huge stigma to it; an illness that has a long-term history of being dismissed and ignored, not only by the public but by many in the health profession.

I was frustrated and panicked that I was going to be labelled with Myalgic encephalomyelitis (ME/CFS).

Then I quickly realised that my local area has an ME/CFS clinic (many areas still don’t have clinics or no support plans in place, many fellow Myalgic encephalomyelitis (ME/CFS) sufferers are simply left to suffer). And, with all the different GPs I see were brilliant and supportive. It became apparent that ME/CFS was fully understood, taken seriously and not dismissed. For example, I was suffering from blurry vision, so I went to the Opticians, and I meekly mentioned to him about Myalgic encephalomyelitis (MECFS), and to my pleasant surprise(he didn’t dismiss it), he confirmed that ME can affect my eyesight due to the fatigued eye muscles and that his wife has ME.

I started to realise I wasn’t going to be dismissed, ignored, or stigmatised and that Myalgic encephalomyelitis (ME/CFS) doesn’t hold the same stigma it did a few years ago.

After more tests to eliminate other chronic illnesses, (blood, forms and further MRIs) I was quickly referred to my local Myalgic encephalomyelitis (ME/CFS) clinic, but the wait time was still 18 weeks, in the end, it took 28 weeks to be seen (there is only one area GP that specialises in ME/CFS, hence the long wait).

What is ME (Myalgic encephalomyelitis ME/CFS)?

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (MECFS) is a complex and debilitating condition characterised by extreme fatigue, post-exertional malaise (PEM), cognitive difficulties, and a whole range of other debilitating symptoms.

Myalgic encephalomyelitis (ME/CFS) crash

A Myalgic encephalomyelitis (ME/CFS) crash / Post-exertional malaise (PEM), is when my body and mind simply shut down, some refer to it as a broken battery, where I have used some of my energy but my body cannot regenerate that energy back as efficiently and effectively as it should do – I get stuck in a void, a painful weighted void where my body (my joints and my muscles) and mind are so exhausted that a simple lift of my arm is hugely difficult, and where every step becomes so heavy, and painful, it becomes impossible.

While experiences can vary from person to person, below I have listed what a ME/CFS crash may feel like for me: 

• Profound fatigue: During a crash, I get stuck in an overwhelming and unrelenting sense of exhaustion in my limbs, muscles, and mind.….every part of my body, feels completely depleted and extremely painful. 

• Muscle and joint pain: Muscle pain and joint pain. The pain is widespread, from the joints in my fingers to the heels of my feet – it’s a deep dull ache, that’s weighing down every part of me; similar to severe flu-like aches, and the pain makes even the simplest movements or tasks challenging and painful.

• Cognitive difficulties: i.e. "brain fog," It quickly manifests causing difficulties with concentration, memory problems, slowed thinking, and difficulty finding the right words. It makes me feel lost, confused and panicked. 

• Increased sensitivity: I feel a heightened sensitivity to noise and touch, my watch becomes unbearable on my arm, or the clothes I am wearing feel unbearable on my skin; it becomes a sensory overload.

• Emotional impact: During a crash, my emotions spiral due to the hopelessness I feel as my body and mind are shutting down, everything becomes too much, and it stops or hinders me from being able to do the simplest of things.

Finally

Not all the Crashes are the same, some will last a few hours, a few days, or a few weeks…and the triggers can be from anything, i.e. doing too much cleaning, simply talking to someone, to having a bath – often something so small can set one off. I have little control over it, thus, my whole life now is to manage and pace activity levels to minimise the risk of crashes.

Dealing with a crash can be an incredibly challenging experience, especially when it comes to my mental health. I need to remember that setbacks are a natural part of the recovery process, and seeking support is crucial during these times.

About me

I am a married mother of four children, in my mid 40's. I run a small business and enjoy writing, which is why I blog. My blog focuses on my experiences of living with chronic illnesses and disabilities such as ME/CFS, spinal stenosis, chronic pain, and fibromyalgia.