An explanation of my illness

People who know me know that I am ill, but I don’t tend to talk about it. The reason for this is that it is really quite difficult to explain. It’s particularly tiresome to explain to everyone you know. It actually makes me feel worse. The result is that I get a sense of disbelief from most people.

The trouble is that I suffer from chronic fatigue syndrome (CFS). To anyone who isn’t me, it just looks like malingering. That’s fine. I understand: the symptoms are all internal. When you feel normal it is quite difficult to understand how someone else doesn’t. That doesn’t change the fact that I am profoundly unwell.

The main symptom of CFS is fatigue; persistent, disproportionate fatigue, both mental and physical. Allow me to describe my plight with an analogy. For me, effort of any kind is like alcohol. Walking for 5 minutes is like half a pint of beer. Running is more like vodka. During and after I feel quite alright, good even, though a light fog might descend on my brain. As with alcohol, in moderation a small amount is harmless and pleasant. But if I stack it on, if I walk for 50 minutes, or write for 3 hours, or try to do some sport I will feel it the next day.

The fatigue is almost exactly like a hangover. It’s the kind of hangover that lives in your whole body, where your muscles ache and your stomach wants to purge. Bright lights, loud noises and strong odours all make things worse. It’s a kind of hangover that can last for days.

Thankfully, I don’t tend to experience that much anymore. But that’s because I avoid doing things that make me feel that way. I don’t exercise. I barely write. I barely even leave the house. Clearly, this isn’t healthy and probably makes me even worse.

There’s a whole host of other symptoms, here’s a list from that Wikipedia article (I’ve crossed out symptoms I don’t have):

The most commonly used diagnostic criteria and definition of CFS for research and clinical purposes were published by the United States Centers for Disease Control and Prevention(CDC).[5] The CDC definition of CFS requires the following two criteria be fulfilled:[3]

  1. A new onset (not lifelong) of unexplained, persistent fatigue unrelated to exertion and not substantially relieved by rest, that causes a significant reduction in previous activity levels.
  2. Four or more of the following symptoms that last six months or longer:
    • Impaired memory or concentration
    • Post-exertional malaise, where physical or mental exertions bring on “extreme, prolonged exhaustion and sickness”
    • Unrefreshing sleep
    • Muscle pain (myalgia)
    • Pain in multiple joints (arthralgia)
    • Headaches of a new kind or greater severity
    • Sore throat, frequent or recurring
    • Tender lymph nodes (cervical or axillary)

Other common symptoms include:

  • Irritable bowel, abdominal pain, nausea, diarrhea or bloating
  • Chills and night sweats
  • Brain fog
  • Chest pain
  • Shortness of breath
  • Chronic cough
  • Visual disturbances (blurring, sensitivity to light, eye pain or dry eyes)
  • Allergies or sensitivities to foods, alcohol, odors, chemicals, medications or noise
  • Difficulty maintaining upright position (orthostatic instability, irregular heartbeat, dizziness, balance problems or fainting)
  • Psychological problems (depression, irritability, mood swings, anxiety, panic attacks)[37]

The CDC recommends that persons with symptoms resembling those of CFS consult a physician to rule out several treatable illnesses: Lyme disease,[3] “sleep disordersdepression,alcohol/substance abuse, diabeteshypothyroidismmononucleosis (mono), lupusmultiple sclerosis (MS), chronic hepatitis and various malignancies.”[38] Medications can also cause side effects that mimic symptoms of CFS.[3]

That list of similar illnesses is quite telling, I think. I’ve had numerous blood tests and such to rule them all out but every so often, I think maybe I have one of those instead. When I started this blog, there were indications I might suffer hypothyroidism, but it seems to have been a false positive.

The fatigue/”post-exertional malaise” is the main thing, though. It’s what so drastically diminishes my quality of life. It’s what makes me less pleasant to be around. It’s why, no, I still do not have a job.

Friends who read this may be surprised to learn the extent of my illness. Usually, when they see me I seem to be fine. I talk, I drink, I laugh and all seems well. I must just be lazy. I see them thinking it when they ask me how I am. Well, dear friends, I make a special effort, just for you, and I pay for it once you’re gone.