Humans of ME/CFS

It is my opinion that my ME/CFS arrived gradually a few weeks after I recovered from a really ugly virus. I began to have days when I was very fatigued and spent most weekends in bed. I flew to New Mexico on vacation which had been planned for some time. It took me a long time to walk to baggage pick-up; I stopped and leaned on a wall every few minutes. I was very fatigued while I was there and felt like I had a hideous flu, so I visited my friend’s doctor. All the many tests came back normal. My primary care doctor at home reviewed all the tests results and said I likely had CFS.

I had never heard of it. I was 63 and newly retired from a job which had been very demanding.  He told me to go home and go to bed. Instead, whenever I had the energy to spend a little time looking online for a doctor who treated CFS people, I did so. I found a doctor nearby who had five other patients who had this horrible enigma. He has been very helpful in treating me and being open to alternative medical treatments also.

I am 78 now, have had slow but real improvement in terms of what I can do. I worked with an acupuncturist/Certified Chinese Herbalist and shared any recommendations she made with my primary care doctor. He usually agreed with her recommendations. I began to be able to stretch my time outside the house, beginning with a 5 minute ride with a friend who took me to the drive up window of my bank. It felt like I had been to a party!

I very slowly began to walk again for exercise, I mean very slowly, maybe 2 minutes a day for several days. I immediately rested after that. I added a little more time every few weeks over most of a year. Now, I walk 20 minutes most days. If I push myself to try to do what I used to be able to do, I have a mini crash or a full-blown one. I believe one of the most helpful things my acupuncturist did was have me take a blood test to determine possible food sensitivities. I have several.  As I avoided those foods, I began to have a little more stamina. When I ate some of those offenders, I felt weaker again.

Also, when I shop, I always get a cart, even if I only need two items.  Standing without some kind of support is very hard for me. For instance, if I see a line of more than two people at the post office, I leave and go back another day. I only run two errands at a time. I drive to church when I have the energy and don’t go when I can’t. When I have to cancel an event, I convince myself that it really is okay so that disappointment doesn’t occur.