Where Are You?

When I post images to my Facebook page, I usually get responses, especially images which reflect the love I have for my family - old wedding photos, my husband and daughter together, "back in the day" shots, etc. Sharing the art I create which helps me go on from moment to moment, seems to strike a chord with my friends. And since I spend about 95% of my daily life housebound, Facebook is my connection to the outside world. It is gratifying to have these responses, because it means someone is listening to what I have to say. And after 8 years of spending most of my life lying on my back on my bed, I still feel I have friends.

But I have noticed that when what I have to say is not about pretty images, or about a funny experience I had with the animals we live with, or the bird nests popping up in spring, things change. If instead I am communicating about the painful side of living like a hermit, of loss and grief, or as I did yesterday, the bitter realization that you and a few million other people are of no consequence to the medical community, the feedback and responses go silent. There's an uncomfortable tenseness in the air of my Facebook world and I get the sense that people are waiting for me to get myself back on track. Their track.

It's as if they are thinking:

"Well, she's off on one of her "feel sorry for myself" trips. I don't have anything to say and I will respond to her when she says something more uplifting, or funny or "normal". A little judgement is going on there.

"Eww, I never know how to answer someone when they talk about pain. I'll wait till she comes back to normal" Gee, how hard is it to say "I'm sorry, I know that's frustrating"?

"Doesn't she know that it's more admirable to not complain, to be an encouragement to others, to show how strong her faith is by never being down?" Well, that's just baloney.

My life is narrow, in the physical sense. And like anyone else, I would like to hear some compassion, sympathy and empathy when I need it. I try to do it for others - my many friends who are stuck in this  medical twilight world of living vicariously through others feel the same frustration when people turn away, or pretend to not hear or see your need, and wait until they are comfortable when once again we have stepped back into the role of not upsetting their view of us. They ignore us until we act the way they want. It's less trouble that way. For them.

Well, it's painful for me. I hate being invisible, living in a visible world with an invisible illness. How hard is it to simply acknowledge that sometimes I feel pain, grief, anger, loneliness, etc. and when I post, it is my only outlet to ask for a cyber hug or a pat on the back, or encouragement of some kind? Is it that hard for you to take the time to extend to me and others like me the human touch, even if it is only through cyber space?

Does it make you feel uncomfortable? Why?

Yesterday, news that the National Institutes of Health (NIH) awarded research grant up to $63 million to study heredity and health in AFRICA  came as a blow to the millions of us who are mainly invisible to the medical community here in the UNITED STATES. There has been more money given to study male pattern baldness then to help fund research for the community who have had their lives shut down by an illness which no one understands the cause, or has an solid plan for recovery. We live under a death sentence, as sufferers of Myalgic Encephalomyelitis we are highly more likely to have heart conditions, cancer or strokes because of the effects on our heart, organs and brain.  

It is not taught in medical school. Doctors are not trained to hear us and believe us. The ones who do are just a handful and they are coming to an age where they will be retiring. There are not a lot of new medical personnel on the horizon to take their places.

Yes, that makes me angry. The NIH director is appointed by the sitting president, so whoever wins this fall will be making some changes in the agency. We have fought for 30 years for recognition, and if nothing is in place for intense research, we will lose the uphill battle and have to start yet again.

And wouldn't that make you angry? From your bed as you lie there? Would you like to be ignored?

And that is why it hurts when there is little to no response when I post my frustrations on Facebook. Hey friends, where are you now? (And to certain ones who make an effort, please don't automatically blame yourself. I am grateful for you.)

It doesn't cost you that much to say you care.

So say it.

Live your life one day at a time!

Musings

So I'm sitting here, not being able to get to sleep, thinking over what I did today. It's frustrating to have this happen on a Saturday night, because more than likely it means I will not wake in time to go to church, since it starts at 9:30. There have been many, many times over the past months when I actually could have gone, if the services started at the usual hour of 11AM, but that's not how it works here. sigh.

This morning I worked on our financial records, bringing them up to date while John went outside, picked up his chain saw, and went a little overboard. Suddenly the white pines, which had sweeping boughs which brushed the ground, are now trimmed and look very neat. I somehow miss the other though, but I am sure I will get used to it. The pines are on the property line with our neighbor and I only hope that she sees it in a positive light. We went to the nearby Mexican restaurant for lunch and then to CVS and then to a local greenhouse to pick out some poinsettias to give to our neighbors. After that, I was completely out of energy and achy with fibro pain.

I received notice that some postcards I sent to different people in Russia were big hits with them. It always makes me happy to know that a little bit of extra time taken to see what kinds of cards they like pays off. I like people to be happy!

Our local church had their big Christmas dinner tonight. I've never been able to go. In fact, I have not been able to attend a single event or gathering they have had. It's hard sometimes, you feel so isolated, and although we know that most people just don't really comprehend what this illness is about, it gets you down nonetheless. I think our Charleston friends have forgotten about us completely, even after being there for 27 years.
It's just too difficult to deal with or try to understand someone with a chronic illness, and it is compounded when the illness itself is not well understood, and people wonder if you really are as sick as you claim to be. Yes, I've heard the talk, some of it has come from my own family members. Oh well, until you know someone personally and seen them struggle with the severe limitations, it's easy to shrug off. One thing I wish people did understand is how much it means to get a card or a note from them from time to time. Of course, if you aren't convinced I'm really ill, then I guess writing a note may be an awkward thing for you to do!

I look for the things God has for me to delight in, such as the two owls, right across our road, calling to each other tonight. They will probably do that for a couple more weeks until they start a family in January. I wonder if they will nest around here.

And I received some very nice postcards today, which always cheers me up. It says someone, at a brief moment in time, was thinking about me as they wrote the card. Always nice!

Well, it's almost 12 midnight and I guess I will try once again to go to sleep.

Come see my latest postcards I've received on Postcards Buffet!