May 12th is CFS Awareness Day in the U.S., and around the world, I believe. Before I tell you more about this devastating ailment, I want you to know that I have recovered.
After 17 years of disabling symptoms and a life in seclusion, which I have described elsewhere, I am now free of symptoms and living a very active life. As my recovery began in February, it became increasingly difficult for me to blog or to correspond with my e-mail friends. I didn’t want to reveal what was happening to me and my life for fear that it would not continue and that I might not actually recover. There was less and less to write about, as I remained “closeted.” Now I am coming out. Believe me, it feels surreal. I am experiencing various re-entry challenges as I rejoin the world.
To illustrate the change in my life, I will tell you about some recent days.
Last week my dear friend Allie was here in Baltimore, teaching and giving a public lecture. As it happened, her classes were organized by another online friend, Susan, who lives about 15 minutes away from me. Gloria and I arranged to go to Allie’s “lecture,” which I put in quotes because it was an informal and intimate Power Point show-and-tell of Allie’s journey from sane quilter to crazy quilter and innovative textile artist. The next day, Susan and Allie came to visit me at Charlestown, where, by the way, Susan was married in our chapel 14 years ago.(More about our historic chapel another time.)
Here’s Allie with me in the chapel.
And here’s Susan with her old boss, the founder of Charlestown and Erickson Retirement Communities, John Erickson in bronze.
We had a glorious time together, including dinner in our Refectory—three hours of non-stop talk, except for a brief pause at the incredibly beautiful altar in the chapel.
That visit came after I had swum 13 laps around 7:00 a.m., exercised for 30 minutes, walked a mile two times, and was otherwise busy. I did lie down for one hour of meditation. That was Tuesday.
On Friday, after swimming 15 laps, I went to the mall on the Charlestown bus. It has been over ten years since I have been in a mall, and this one is a mega-mall with five major department stores, 23 shoe stores, as many jewelry stores, three wings, two levels—well, most of you are very familiar with malls. I felt as though I had been dropped off in a foreign country. It was overwhelming. Of course I recognized the names “Macy’s,” “Nordstrom”, “JC Penney”, “Sears” and “Lord and Taylor”, but I had the barest notions about where to look for the items on my list.
For three hours, I was on my feet, walking and re-walking that mall, sitting only to try on shoes.
After I got home, I walked a mile with Ernie. Then made preparations for our weekend guests.
At 10:00 that night, our daughter Patti, granddaughter Melissa, grandson Patrick, and great-granddaughters Aly and Lilly arrived to spend the weekend. I met them, showed them their rooms, visited for a little while, then walked through three buildings back to our apartment.
The next day, having made a secret plan with Aly and Lilly, I went to their guest apartment at 11:00 a.m. and took charge of them while Patti and Melissa went shopping. (!!!) The girls and I made pizzas (sorry, I forgot to take pictures), with a variety of veggies I had prepared for them to choose from. They had so much fun. Then the three of us went to see the model railroad in operation, played shuffleboard, and returned to their apartment to put the pizzas in the oven.
After our very successful pizza lunch, we went swimming. Aly and Lilly—
Patti and me, too.
Leaving the pool, I went to get Melissa and brought her back to my room for a one-on-one visit. Unfortunately, Melissa developed a migraine and had to be taken to the ER at about 5:00 p.m. Minutes after she and Patti left, Patrick arrived with Aly and Lilly. Again, I was in charge of the girls until they went back to their quarters at 9:00 p.m. They stitched, of course! And we had Chinese food delivered for dinner.
Soon after they left, Patti phoned that she and Melissa were on their way back from the ER. I remembered that I still had the Mother’s Day gift Patti had asked me to frame and wrap for the girls to give Melissa.
I had also forgotten gifts I had for the girls. So to take the forgotten items, I walked back through three buildings, meeting Patti and Melissa at the elevator, then walked back home again. By then it was 10:00 p.m.
Having already accepted an invitation from my brother to join him and his family for brunch on Sunday, I let Patti and company go to the Inner Harbor on their own. Don picked me up at 10:30 a.m. and his son-in-law Phil brought me home at 5:00 p.m.
In my brother’s backyard, being serenaded by his 16-year-old grandson Caleb. (Yes, they have a Caleb, too, and a Josh.)
This is a shot of my sister-in-law Chickie, my brother Don, my niece Anne on the far right, and her 17-year-old triplet daughters, Heather, Sarah, and Emma, with me.
Home again, I read the paper and slept nine hours. Monday morning, I swam 15 laps and exercised for 30 minutes. I’m using a 7-lb. dumb bell as part of my regimen.
Never expecting to recover, content in my life of solitude and stitchery, I am still adjusting to being able to be active non-stop for 12 hours, as I did during the past three days. I’m still figuring out what I want to do with all the time and energy I now have.
It was hard for me to get used to living with CFS. It has also been hard for me to get used to living without it. I just realized: I’m going to have to rewrite “About me” for this blog!
Sadly, though, there are hundreds of thousands, probably millions, of people with ME-CFS, at various levels of disability. Formerly professional people have become homeless. I know one. It’s not unusual for husbands to abandon wives with ME-CFS. I know one. There are women living alone, without care-givers, struggling to survive. I know three of them. Healthy friends disappear, unable to tolerate the unpredictability and limitations of our lives. Mine are long gone. Most medical practitioners know nothing about ME-CFS; and because they are ignorant, they diagnose the patient as neurotic or malingering. The government agencies charged with investigating and researching health issues ignore this condition and misuse the funds appropriated for it. Can you imagine what would happen to you if you suddenly became completely unable to earn income? It took five years for me to get Social Security Disability Insurance. Without my husband’s income, what would have happened to me? There are no social agencies established to provide support for people with ME-CFS.
Some day this illness or whatever it is will be understood. Maybe it can be prevented. Maybe the treatment that enabled me to recover will also work for others and become widely available. Because these eventualities have not yet been realized, many people who know someone with ME-CFS doubt the reality of their symptoms and disability. People with ME-CFS usually look well. There are times when they may be able to function as a healthy person can–for a little while. That reinforces the skepticism of the unbelievers.
Worse than being in pain and unable to function is the knowledge that people, often people they care about, doubt that they are really ill.
ME-CFS is a devastating, life-changing condition from which recovery is exceedingly rare. Often the cause of death among people with ME-CFS is suicide.
For me, having CFS was a learning experience. Because of the wealth of resources and support available to me, CFS was a blessing. Instead of wanting to recover, I wanted to get all I could from the experience. I feel as though I have graduated. Maybe I have gotten what I needed to get from that experience, and I’m done with it. Now I have to figure out what I’m supposed to do next.
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