Bonjour,
This is about me and the impact M.E. (Myalgic Encephalomyeitis) has on my life. For the first time I'm having to type this with one hand! You see as much as you try and manage this illness events take over and you find yourself dealing with new problems or health issues. My recent unexpected event was a fall in my home and breaking my wrist (the first time that I've broken a bone). So I've been reviewing the safety of my home environment and the impact of getting old. Still it's hard to know sometimes what you can attribute to your illness or other factors.
On reading this you may find some commonalities in your life with mine but we all vary in degrees of illness, our symptoms, our circumstances and any other medical conditions.
I've had M.E. for almost 23 years, I'm mostly moderate and housebound a lot of the time. Even with mild M.E. we lose about 50% of our capacity and the life that we had before becoming ill. I miss so much and all the things that I used to enjoy. I miss me.
I live alone and in a different country than my own. The latter complicates my life even further by language, culture, the poor understanding of M.E. and the illness being mostly known as CFS (Le syndrome de fatigue chronique). I have a few friends but I live far from my family. At times I feel lonely and isolated. Fortunately the M.E. community on social media helps me enormously.
I'm now officially retired though it feels like that was the case when I could no longer work 23 years ago! With increasing age there comes other medical conditions on top of M.E. For me it has been problems with blood pressure, bladder issues, eye problems, dietary issues, dental problems and a general decline in energy as well as my most recent fall.
I guess that the longer you live with M.E. the more accustomed you become to manage it though it can be unpredictable. If I receive an invitation of any kind I can't decide on my response immediately. I hope that friends or family understand my limitations and unpredictability of this illness.
For me the best way to manage this illness is through pacing and rest. However, M.E. changes constantly from day to day and even from hour to hour. It feels like I'm on a roller coaster going up and down all the time.
This makes it difficult to plan anything. If I know that I have medical visit or some other reason to leave my home I rest beforehand and rest afterwards. Sometimes unexpected events in life can mean that we are thrown into a situation where it's difficult or impossible to plan, pace or rest - as has been the case for me recently.
There is a limit to my energy both physical and cognitively. I liken my body to a battery that's broken and hard to recharge. Nothing seems to help me to fully recharge my battery. If I push myself beyond this I will most likely suffer with PEM (post exertional malaise) which can last for a few days. If I continue to push myself it could eventually lead to a severe relapse with a worsening of all my symptoms. That's more serious and can last a lot longer. I want to avoid that if at all possible.
On better days I'm able to leave my home and for a while I feel almost 'normal' for a short period of time. But of course I'm always aware of overdoing things and the strong possibility of payback.
