Going over old blog posts, I came across one from March of 2015 in which I considered the lessons or tests that ME/CFS made me face and how I was faring. Since these challenges are not exclusive to my disease, I thought I might share them here, hopefully to inspire personal reflection. As for myself, they provide a format for comparison, to measure how much I have progressed in the almost three years since I first wrote about them.
Test #1: Can you find a reason to get out of bed when you’ve lost your ability to work, and no one needs or expects anything from you?
Amazingly, the spirit adapts, and finds new purpose for living, although my daily goals are much more simplified than post-disease lists.
Test #2: Who are you when many relationships have gone by the wayside?
My doctor warned me early on that friends would drop out of my life, and that I would need to distance myself from others. What has emerged over the ensuing years is a handful of friends who enrich my life in ways I might never have appreciated before. Some of my friendships are here, on-line. The need for people does not diminish, however; the parameters do. I don’t go for weekend shopping trips with friends anymore, but I can now do lunch again.
Test #3: Loss of brain power: brain fog, confusion, and memory loss.
This is my number one frustration, and causes the most arguments between my husband and I. My mind, while faulty, still clings to a sense of righteousness. It cannot see the fallacy of its processing, and I often think I’m right when I am way off base. I will think “on” but say “off”, or misuse a word. Directions are useless. I get angry with myself. This test, I continue to fail.
Test #4: What happens when you no longer have the energy to make optimal life choices?
Guilt is one of the first things I had to overcome when I became ill. Prior to illness, I followed a healthy diet, and was conscious of keeping my activity levels up. Now, restricted to around 1500 steps a day, my priorities have changed. I do the best I can, with what I have.
Test #5: Living with restricted energy.
Three years ago, I could only be out of bed for short periods of time (15 -20 minutes.) Now, I am able to sit up longer, and manage about a total of 4-6 hours per day. Using my energy wisely continues to be a challenge. For example, I can cook dinner, and maybe even sit up to eat it, but then I will not be able to clean up, nor join Ric for TV afterwards. Now that we are travelling, we have to be more careful about how I parcel my energy. Ric continues to do the grocery shopping, and helps with meals, and we make getting out for drives and sight-seeing the priority.
Test #6: How to stop worrying about others.
Idle time does play havoc with the mind. I have had to learn to let go of guilt and recognize that I do what I can for others, but am not responsible for them. Worry, in general, just seems to be part of this disease. I lock onto a concern and my mind will not let go. Meditation and affirmations do help.
Test #7: Keeping hope alive.
This is getting easier. There were times when I just couldn’t see my way through. Now I know that when I am struck down for a few days or weeks, it will pass. At least, I hope.
Test #8: Compliance
Confession: it is not in my personality to be compliant. When I was four and my mother said: “Never stick your finger in a socket,” I did it. When Dad said: “If I ever catch you smoking, I’ll kill you,” I went and bought cigarettes. I hate being told what to do, so sometimes I just don’t. I don’t always take my meds. Sometimes, I keep going even when my body shouts: “Stop!” I hate compliance.
I’ve added a new life test this year, of course: Can I manage this disease while travelling?
What life tests are you facing? Are you acing them, or like some of mine, are they ongoing lessons?
Writer, avid reader, former educator, and proud grandmother, currently experiencing life through the lens of ME/CFS. Words are, and always have been, a lifeline. Some of the best adventures, I'm discovering, take place in the imagination.