Hi All,
It is ME/CFS awareness week soon and since I have this illness I thought I would do my bit to increase awareness of it. In Australia, ME/CFS has a higher incidence that breast cancer or lung cancer. However it is largely a hidden illness as many people are bed bound or too weak to do anything more than survive. So this email is my effort to increase your awareness of the illness.
Awareness
A good guide to the illness is found at
http://www.mefmaction.net/documents/me_overview.pdfDefinition
ME/CFS is an acquired organic, pathophysiological, multi-systemic illness that occurs in both sporadic and epidemic forms. Myalgic Encephalomyelitis (ICD 10 G93.3), which includes CFS, is classified as a neurological disease in the World Health Organization’s International Classification of Diseases (ICD). Chronic fatigue must not be confused with ME/CFS because the “fatigue” of ME/CFS represents pathophysiological exhaustion and is only one of many symptoms. Compelling research evidence of physiological and biochemical abnormalities identifies ME/CFS as a distinct, biological, clinical disorder.
Symptoms
These are the symptoms as I experience them.
1. Fatigue: -that substantially reduces activity level – I am at somewhere between 30-40% of what I used to do.
2. Post-Exertional Malaise and/or Fatigue: I have a limited amount of energy to spend each day at school. For example I try not to go up and down stairs more than 3 times a day. If I do more than that I will have less energy to spend on teaching.
3. Sleep Dysfunction: I used to sleep like a log. Now if I do sleep all the way through a night it is like WOW I SLEPT!!
4. Pain: I am in pain all of the time. My legs ache as though I had run up Mt Ainslie or something. Sometimes the students bump my chair and I hurt all over from the impact. I only take painkillers when the headaches are bad enough to distract me in class.
5. Neurological/Cognitive Manifestations: I have a bit of photophobia – sensitivity to light, also sensitivity to taste etc.
6. At Least One Symptom from Two of the Following Categories:
a. Autonomic Manifestations: This is what you mostly see “Chronic Orthostatic Intolerance” – inability to be upright for long basically because my heart doesn’t adjust when I am upright and the blood pools in my feet. When I lie down my heart rate increases and then I am o.k. again.
b. Neuroendocrine Manifestations: loss of thermostatic stability – this drives me crazy – burning hot feet in the middle of winter so I have to get icepacks in the middle of the night to cool my feet
c. Immune Manifestations: recurrent sore throat, recurrent flulike symptoms – so I wear a scarf almost all the time, day and night, in the cooler months.
7. The illness persists for at least six months: I have been sick for almost 18 months.
I want to thank this college and my colleagues for always treating me with respect as I have staggered through the last 18 months. So many sufferers meet with doubt and cries of ‘It’s all psychological – pull yourself together!’ Just because it is incurable, chronic and has so many really weird symptoms doesn’t mean it should be treated as if it is made up. Those who knew me before I got ill, and know what a battle my life has become, know that this is not something one does for kicks.
Prognosis
One of the funny comments you hear about this illness is: People keep on saying I look so well, when I feel so ill! Lots of sufferers write about that. As I told the doc in Jan “I am extraordinary well, apart from this debilitating illness”. There is no cure, there is a 5% chance of a ‘spontaneous recovery’, 40-60% chance I will get somewhat better, 40-60% chance I will get somewhat worse and may go into decline, 5% chance I will die of organ failure or be totally bedbound. Oh, and all of the symptoms above can randomly get better or worse at any time. I generally feel worse in the morning and better as the day goes on. But not always. Such a crazy thing to be beholden to!
You are probably wondering why I bother coming to school considering everything. Well, it relieves the boredom (insert smiley here) and I feel I have something worthwhile to contribute to the students I teach and the staff and parents I interact with. Also I feel I am so very fortunate. I have nothing to do but teach – my husband does the housework etc. The target age group for this illness is 25-40 – so many young people just starting out or mums with young children. It must be so hard for them.
Please understand I am not saying that this illness is worse than others because I know I am not special. I know many of you carry extraordinary burdens in your health and family situations. However, I wasn’t sure that many of you would know much about my illness so thought I would take a moment to make you aware of it during this awareness week.
Regards and thanks for taking the time to read this,
Jessica Harvey
IT Department
Erindale College
McBryde Cres
WANNIASSA ACT 2903
