Monday, April 13, 2015

The Trouble With Chronic Illness, Part 4

Hello Readers,

As you can tell by the title, I decided to write more on the subject. I said in Part 2 that a friend with fibromyalgia died in 2009. Of course, she did not die from fibromyalgia; she died from a cold. What? Yes, but only because she had chronic leukemia.

As I said in that post, she would not take medicine, choosing to treat herself with a macrobiotic diet. Her T-cell counts were off - almost anything would have made her sick. Her husband had caught a cold at work, and he brought it home with him. My friend stayed home most of the time and did not have any defenses against illness. She caught his cold, but would not see a doctor or take medication.

She used mustard and ginger poultices (separately, not together) to treat her cold. The last I spoke with her, she claimed she was feeling better and would call me in a few days. She needed to get off the phone because she was about to put a ginger police on her chest. About 36 hours later, she died. I so wish she had taken cough syrup and Tylenol or aspirin or something, anything that would have made the cold go away. I miss her.

That friendship died in the truest sense, but another friendship has died because of my illness. When we were four-years-old, Lorrie moved in next door to me at the duplex we were living in. We became fast friends. Although we were only six months apart in age, I was a grade ahead of her in school because of birthday cut-offs.

She was my second-best friend and remained so for 17 years. When we were 21, she "borrowed" some money from me that I would have happily lent her if she had asked. She did not think I would notice the missing $100 - in 1981 dollars - and planned to pay me back when she was paid. I noticed. We did not speak again until more than four years later.

We became friends again, best friends this time. Moreover, we stayed best friends until about six months ago. I had invited her on a shopping trip where we would have spent a couple of nights on the road. We each live in a different state, and the trip was to a third state. She agreed, but as the dates got closer, she came up with excuses, most involving taking care of her grandchildren.

(For the short version, skip to **.)

Well, I spoke to her children and asked if they could find another sitter for a few days only to learn that she was not taking care of her grandchildren while their parents worked and had not done so in a few months. Caught, she confessed that she lied because she did not want to hurt my feelings.

She wanted me to visit her but never visited me. I even moved back to my home state for graduate school - 75 minutes away, instead of four hours - and she did not visit me once in the two years I was there. I visited her several times.

She wanted the "old" Amelia back, the one with an overload of energy, and was tired of my limitations. She had tried to tell me how to do this or that to "feel better" for the last few years, never understanding that there is no cure for what ails me. Oh, how I wish there was! I miss the old me, also. I am tired of my limitations, too.

The sad thing is, if she had asked me what was wrong, I would have told her. She knew I was diagnosed as 100% permanently disabled, but did not know why. She did not know I was chronically ill until about nine months ago. She asked why I had not told her, and I replied, "No one wants to hear about it."

Then, a couple of months later, when the falling out happened, she said all I did was talk about it. Needless to say, I was confused.

** Perhaps I am wrong, but I thought my best friend would be more understanding than my not-best friends would, but the reverse is true. See, fibromyalgia is a multi-symptom thing, not just one. In addition, fibro is not the only thing wrong, either. I am only discussing this one because it is hard to understand.

I started to compile a copy of my medical records, complete with explanations and graphics from websites like and - National Institutes of Health - to send to her.
Then I realized it would not matter. Her mind was set on me being well if I only tried. What? Of course, I try and continue to research what might help, like yoga or water aerobics. Stress exacerbates fibromyalgia. For the last few years, our friendship became stressful.

I do miss her being in my life, but I had to end it. I no longer hope the ringing telephone is her and her suggestions on getting well again. I am not frustrated afterward, because there is no afterward.

The moral is, try to be understanding, because it is impossible to know what another person's journey is. I am grateful to my readers who understand when I need to take a couple of days off. And this is the final installment of this series.

- Amelia