4/4/22.

It’s settled. I’m not going to my son’s wedding. I find I am resenting having to explain, to…justify not being there. Would I get the same responses if I had cancer? MS?

It’s all you have to do-ism.

Breakfast: tuna salad, bone broth. Lunch: homemade minestrone, hardboiled egg. I made the minestrone myself in the crock pot two days ago but I could not have done it today.

A year ago today, I was diagnosed with shingles. That lasted through April. Here I remain, in bed. I would gladly return to simply shingles.

4/5

I felt dreadful today. I cannot figure out why.

Spoke to the person at rehearsal dinner venue and chose the menu.

4/8

I am forced to be my own advocate. That hurts and costs precious energy. Some people are so severe they do not have that energy available.

“But if this med doesn’t work, you will just have to come in.” Like thats an option I’m just preferring not to use. Like that is an option. This from a medical provider.

I am definitely getting the impression I will have to justify myself to people, to prove I’m really ill. Do you know another condition that requires justification? So my hardly able to leave my bed for a year doesn’t do it for ya?

Have felt variations on dreadful all week. I can usually identify the trigger. I’m at a loss.

OK, I have learned something more. I am having a crash because of the extended but minor infection with which I didn’t feel fatigued, but I crashed a few days later. God keeps showing me new things about this illness I’ve had for 28 years.

4/11

Yesterday my brother called. I knew why before he said anything. It was to tell me I should go to my son’s wedding. Oh snap, why didn’t i think of that? He tried convincing me I’m just depressed and I should get over it. I explained that I would hardly miss my child’s wedding because I’m nervous about traveling; I’m sick. I have a real diagnosed illness. He started challenging me: oh really, what is it? if you take a blood test will it show up? in other words: Prove it!

I declined to prove it. I told him I would send him something to read. I did, to read, to watch. The information is not equivocal. If he isn’t convinced after considering what I sent, it’s just not my problem.

I have had this thing for almost 30 years and nothing has changed in that time. There is no cure, not much in the way of treatment, no serious research money…and even though the CDC and the NIH and the Mayo Clinic and SCIENCE disagree, there is no widespread understanding that this is a real illness, just like cancer and MS. Your relatives are made uncomfortable by your stubborn refusal to get better in a reasonable period of time. We should feel for them, poor things.

A friend in a social media group for people with ME had the best response to his challenge: The fact that I am not going is your proof that I’m sick.

And that’s enough about that.

Diary will continue in future posts.