Life With Myalgic Encephalomyelitis Chronic Fatigue Syndrome
MECFS The life of those who have it and the families of those with MECFS
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a long-term chronic illness that effects 20,000 people in New Zealand alone, millions would wide. These are the people who have the condition, there are many more than that who are directly impacted due to a family member with the condition.
The family may not suffer the debilitating fatigue and the other symptoms of the illness, but they live with the consequences of it everyday. It is good to remember that the whole family unit is effected when one of its members is unwell.
My wife has this illness, she had it since 1997 she suffers from extreme fatigue that restricts her ability to function even on simple and routine tasks. She can’t sleep through the night, fatigue causes physical pain in her body, she is sensitive to noise and light, the illness is not in the mind it is very real and a physical disability. It is not obvious to anyone who sees her and she often puts on her brave face. Over stimulation and physical activity has a serious effect and can cause relapses into a “worse” level of the illness.
Things we used to do together become things in the past, no more do we go for long walks together, or have late nights out with friends, church or other meetings are avoided as even in small gatherings there can often be sensory overload.
Other effects are…
- Reduced income, an increased mortgage and medical bills.
- Limited social connections
- Rarely venture too far without long-term planning and pre-rest with long-planned recovery time.
- Have to plan spontaneity.
I say this not to moan, but to raise awareness of the condition. Governments should invest in research to find a solution/treatment for this illness.
If you are in New Zealand please find out more about ME/CFS from the ANZMES website.