Driving research of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS),
Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia and Long Covid

Most Important I try to be understanding & kind to myself

typewriterWhen I first became sick, I thought I had Mono, I was so sick & so tired.

I finally went to the Dr. after a month, (my Dr. was on vacation) saw a partner who said I just was depressed. I knew that was bs, I saw my Dr. when he returned. After some tests he determined I had CFS. (He had been to a conference about CFS on vacation) That was in 85/86, it took 3 years to semi recover. Since then, I have had numerous relapses of varying degrees, but I have had some good years as well. Good means 50-75% of how I use to feel. Lately though, I am lucky to have 20%. I am having the worst relapse ever, struggling daily just to do a few simple things, like eat or brush my hair. There has been mold under my house for at least a year, (due to a slow water leak) while it is now cleaned, my relapse is still current. (Cleaning house is not something I am able to do, getting help with that too.) For the past year I have become frightened by how bad this relapse has been. Luckily I have had help from family, I have had to depend on others for groceries & often meals. I felt relieved to know about the mold because that is a big trigger of ME / CFS relapses. So at least it isn’t some new health problem to add to my list.

I have had this so long, I can barely remember what my life was like, before I had ME / CFS. I learned to create a balance between What I Could Do & What had to be done. The most important thing to avoid is stress & the best thing to do, is to make a point of doing something that makes YOU Happy every day. (Easier said than done) So much of daily life is frustrating for those who struggle with this disease, joy is in short supply. Listen to your body, you know what works for you. While life with ME / CFS is challenging, never give up hope. There are new discoveries made almost every month lately & new options that may help. The good news is the medical community is finally taking ME / CFS more seriously. It has taken a long time to get this far.

For those who don’t get it… just imagine the longest hardest day you have ever had, & that is how we feel every day we wake up or even worse. If we were able to do more, we would. I lost the ability to read for fun, years ago, so, I watch a lot of TV. I miss listening to music, but right now music irritates me. I keep the lights low. I have actually worn my sunglasses in a dark room to watch TV when I have a migraine. I only leave the house when needed, once a month or less.

My current goal is to use my treadmill a few times a week, but with the aches & pains of getting older, that maybe too optimistic. I just try to not get worse, try to keep getting up & functioning as best I can. I try not to overdo but it happens anyway, Most Important I try to be understanding & kind to myself. I look forward to a bright future where ME / CFS is cured & millions of people can resume having full lives again.

Victoria
USA

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

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