ME and me

I’ve recently been diagnosed with ME/CFS.

These are extracts from the ProHealth section on this condition:

The best known symptom of Chronic Fatigue Syndrome & ME (ME/CFS) is an unrelenting, persistent loss of energy that physicians call “fatigue.” However, the profound loss of energy experienced by ME/CFS patients is nothing like the fatigue most people experience at the end of a long day or following a strenuous workout. It cannot be relieved by rest or sleep. In fact, patients may awaken feeling just as fatigued as they did before they went to sleep.

The hallmark of Chronic Fatigue Syndrome & Myalgic Encephalomyelitis is wide-ranging symptoms that wax and wane. These symptoms can affect any part of the body and any system, including the nervous system, the endocrine system, the digestive system, and the immune system. That is why ME/CFS is called a “multi-system” illness, and why fits into the category of neuroimmune illnesses – illnesses that primarily affect the immune system and the nervous system.

Healthy people also experience fatigue, muscle aches, digestive disturbances, and insomnia, as well as many other symptoms, but what marks ME/CFS symptoms is their severity and frequency. Patients with ME/CFS experience symptoms virtually daily, and to the point that they can become incapacitating.
Source: ProHealth

The website lists 55 primary symptoms of Chronic Fatigue Syndrome & Myalgic Encephalomyelitis; 36 of them currently affect me.

Not all patients experience the same symptoms, and not all experience the same severity of illness. As with any other disease, symptoms can be mild, moderate or severe. Patients often rate themselves on a 1-10 scale, with 1 being bed-bound, and 10 being fully recovered. In addition, there are three general levels of illness: mild, moderate, and severe.

Mild: Patients are mobile, can care for themselves, do light housework and work part-time, or even full-time with the curtailment of all other activities.

Moderate: Patients have reduced mobility and are restricted in all activities of daily living. They have usually stopped work or school.

Severe: Patients are unable to do anything without assistance. They spend most of the day in bed and are sensitive to light and noise.
Source: ProHealth

I consider myself very fortunate: I’m at the mild level of illness. I’m (reluctantly) learning my limits, and I have a lot of support, both personally and professionally.

You may be wondering why I’m sharing this with you, and why here? There are several reasons:

1. To raise awareness of this condition, which affects far more people than you’d think.
2. To show that anyone can have what’s known as a hidden illness.
3. To encourage discussion, invite advice and suggestions, share experiences with those who have (or care for someone with) the same condition – especially, but not exclusively, fellow writers.
4. To explain why my online activity, already sporadic, will probably fluctuate wildly from now on.

As well as being published on my blog, this post will appear on Facebook, Twitter, Google and LinkedIn. I welcome comments on all platforms.

Like Someone with ME image source
Invisible Illness image source

Tagged: CFS, chronic fatigue syndrome, chronic illness, hidden illness, ME, myalgic encephalomyelitis, personal