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!

At a low point

It's been so long since I wrote. I am in the midst of severe regression, lying still seems to be the biggest part of my life. ME is so draining and often I long to go home to Jesus, to be restored and in His presence. Even after all this time, I still struggle with how people see me. I have found that people even have expectations of how you "should" be when you are severely ill and there is no cure. Some accept it with love and concern, and accept completely what I can and cannot do. Then there are those who are still puzzled by the stringent limitations and want to accept but are not sure exactly what is going on (but don't trouble to learn about it). Then I have found there are some who want me to exhibit what they view are the traits of how a sick Christian person "should" behave - don't complain, model sincere belief in Christ and be a model for the rest of us. (think Mother Theresa)

ignorant thought- You lost your friends? Perhaps it was you own fault.
truth - I have found out who my true friends are. It is not my fault. The others disappeared and God opened my eyes.

ignorant thought - If you would just move and exercise a bit, you would feel better.
truth - If I exercise, I will get worse and could possibly strain my heart too much and die.

ignorant thought - You should not grieve or have sorrow while severely ill. Be a saint.
truth - You have had no experience with severe illness or have had the grace to learn. You are truly not my friend.

Even as I wrote this, I am conscious of how people will view it, so I try to choose my words carefully.

The Lord knows I want my life back. The Lord loves and councils me, holding me in His everlasting arms and gives me peace. I can cry out to Him. I can tell Him I feel so low. I know some people will view this as self pity, but isn't that an easy way to shrug off any need to learn about this devastating illness.

I sincerely pray that it never happens to you, or someone you love.

Postscript- I know a lot of why I'm low is because of how ME makes me feel, which I can't do anything about. It drains everything, not much I can do about it. And yes, I have had those things actually said to me, and much more, but I don't need to put everything down. Please be kind to those you know are truly struggling!

What A Friend Does

A friend is one who knows you 
and loves you just the same.
Elbert Hubbard

Those who read this blog regularly know that at times I discuss my illness, Myalgic Encephalomyelitis (ME/CFS), and some of the trials and blessings which have come out of having something chronic and incurable. So far it has been four years and God has seen me through every step of the way. One of the worst aspects is the total loss of your former life, and sadly, usually the total loss of your friends in your former life. Once in a while someone will try to understand and just recently I answered someone's inquiry this way:

“A simplistic way to describe this illness is like having a jar full of spoons sitting on my nightstand, and each morning, there are magically a different number of spoons in there. And then each time I do an activity, I have to "spend" a spoon. So I get up and make the bed - spoon; I take a shower, dry my hair and get dressed - spoon, spoon, spoon. Eat breakfast, water the front porch plants - spoon, spoon. You get the idea. Going to an appointment uses up several spoons. Going to worship uses up several spoons. Interacting socially takes several spoons. I have to be very careful not to use up the day's spoons before the day is over. When I do too much, I flare, and the flare could last a day or several weeks. One of the things I learned about at the specialist was to train myself in "pacing". (Actually, I have a whole book about things I need to do!) Sometimes my body sends out warning signals that I am approaching the limit, and I go lie down. Sometimes it doesn't and that is where the pacing comes in - after a specific amount of time, I lie down anyway. Or at least that is the idea, but often I forget and I pay. Did you see the painting I did and posted to my blog on Sunday? When I am doing art, I get so in the zone, I forget about pain and exhaustion. But if I am not careful, I will cross my line, and once I have finished what I was doing, then I really pay and that's what happened to me Sunday later on. And Monday. And yesterday. I was in agony and I just had to wait it out. And I never know how many spoons will be in the jar the next morning.”

The spoon idea is not original with me (original writer), but I find it the easiest way to explain to people so that they have some idea of my daily life. Most people do not want to rummage through paragraphs of medical discourse, facts, and figures, so this is a good stand in. 

I DO have a friend, who like the Bible says, sticks closer than a brother. We don't get to visit very much, as she teaches full time, and I am not always up to her coming over when she has some free time available. She knew about my spoon explanation and this past week, came over with an extra special gift, and I had to share it with you!

She had found four old spoons, written a verse from Scripture and some words of encouragement for each spoon, rolled them around the spoon stem and tied each with a different color ribbon. Then she tied tissue around an old sundae glass and inserted the spoons. Now I have a bouquet of spoons to look at and if the day is unbearable, I can pick a spoon and open the encouraging note. Being a very visual person, this comforts me more than I can say! Sometimes we spend the short time visiting on my bed, because I am not able to do more than that, and we laugh and encourage each other. I am very thankful for this most special gift from the Lord, and I think my husband is very thankful for me that I have someone else I can talk with. 

The cross stitch in the background is one I had done for my mother many years ago, and brought it home with me when she passed on. The verse says "Pleasant words are like a honeycomb, sweetness to the soul and health to the body" (Proverbs 16:24). Together with the spoon arrangement there's enough encouragement for almost any day!

(Click on any picture you wish to see closer.)

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

Week's Catch Up

I had a rough beginning to the week, but am feeling somewhat better today. I had a wonderful phone call from our assistant pastor asking about me, which was very encouraging. I really appreciate it when people sort of "check in" to see about how it's going. I've had some encouraging emails too and it's great to know that more and more people who know me are understanding this illness better. And then another friend stopped by with a meal for me, knowing it would be something I liked. How great was that?

This summer has been a disappointment in the flower department. Usually by now, we have impatiens all around the old stump, and I would sit on the porch as weather permitted and enjoy looking at them. Another dear friend had planted them for me this spring and I was really looking forward to their growth, but instead, we watched helplessly as they slowly dropped their leaves and then collapsed in a mini pile of mushy plants. I did some research and figured out why. Earlier this year, John had purchased a chipper for all of the dead tree limbs which fall around our property and had a nice pile of chips for mulch. He lovingly spread them over all of the flower beds. However, there are two things which will prevent you from having bountiful impatiens growth - lack of water, and too much water. The little wood chips held water, and since where the flowers were planted is the same area for the drain from the A/C, there was always lots of water, which is one reason why they have always done so well there. But the wood chips changed that equation and sadly, there are one or two scraggly plants left and I think their time is coming. And my friend put in four flats of impatiens! Once they get too much water, that's it, there is nothing more you can do for them. Live and learn!

In the other beds, we tried some different kinds of flowers than we have planted there in the past, and they just don't suit the area. So, it's been kind of a disappointment not to see  what we had hoped to see. But there is always next year!

We had bluebirds and Carolina wrens nesting at either ends of the front porch. The bluebirds were in the nesting platform, and the wren was in a hanging plant. Every time I came out to water, the bluebird would flee the nest. But when I got around to the plant with the wren, she would wait until the first drops of water came down and then hop out to a nearby bush, scolding me fiercely. Each mother hatched a lovely family and they all left a few weeks ago. We had bluebirds in the yard boxes as well. 

That's about all I can write for today, and I hope everyone has a safe and fun weekend!

How the impatiens looked in the past (and will again!)

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

Art Gift and A Story: For Good

Saturday morning I received a surprise Easter package from my friend Fran. She lives at the other end of the state and is a special friend to me in several ways. In her package there was a fancy hummingbird feeder (picture after I fill it up) and a precious piece of art that she had painted just for me.

Something For Ewe

And she thoughtfully included a small stand for it. It now graces our bedroom and every time I look at it I feel encouraged. Isn't it just grand?

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For Good

49th in the Tuesday Story Series

As a youngster, when we visited my grandparents or great-aunts and uncles, I remember often being shown various pieces of linen and other embroidered items, tucked away in a drawer. My great-aunts would receive gifts of these items during their life time and every now and then, would take them out to show or talk about who gave them each treasure. When I would ask why they were tucked into a drawer and not used, the answer would be along the lines of "Oh, but I'm saving them for good!", meaning they were being saved for some special reason in the future. More often than not, sadly, that future would be when their house was being cleaned out after they had died, and the items were passed on to another generation, or given to a charity shop.

In the years before and during the time I owned an antique business, I treasured finding these almost pristine pieces of handwork. Pillowcases, towels, bedding, lingerie, tablecloths, napkins - done on fine linen or cotton. As I began to specialize in antique French smalls (small items, usually not furniture), I found some of the most exquisite examples of all - embroidered French linen bedsheets.

These sheets were made of a heavy stiff linen, sometimes unbleached, and frequently had very fancy initials worked in padded white thread, and other incredible hand stitching such as open thread hem work and other decorative designs. The reason the sheets were so stiff was because they were never used! Linen becomes softer with each wash.

Soon I began to keep much of what I found and used them. After all, our house was not a museum and these items were meant to be used! Our pillowcases are all vintage or antique, we use vintage kitchen towels and I even use the French linen sheets as an extra top sheet on our bed; they are just the perfect weight for cooler temperatures at night when the A/C is running. And they have become softer with use and feel luxurious!

It makes me sad that people put away things which they could have used in their own lives. After all, isn't your family special enough for daily beauty? What's the point in having something so unique if it isn't used? So, I say - use them! If you have old linens which have been passed on to you, don't just stuff them away for the perfect time - the perfect time is now! There are many sources on the Internet for turning small embroidered treasures such as doilies or table runners into one of a kind fashion statements and other uses, such as chair seat covers. And here's a great blog about how to wash and take care of them: vintage linens.

The ones found in the antique stores are usually high quality, one of a kind, and not very expensive. If you want something like the French linen sheets, you can find sellers for them by doing a Google search, although they will be more expensive than local vintage items.

Don't put away something "for good", use it for now!

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

Tag Tuesday - Friends, and a Story: Graceful Rider

How was your Valentine's Day? We had a great time here. Our daughter Tabitha made a tasty lunch and then we exchanged cards. My husband had a book of poetry for me, of John Greenleaf Whittier. I recently rediscovered him when I included a line from one of his poems on the tag I made last week.

This is my second post for the today. I posted earlier with the results of one of the lessons from my art class. This post is for Kard Krazy, where the theme is Friends.

(click for details)

I used some rubbing stamping, and distress inks, buttons and a ribbon bow. The image is another copy of a early 1900's postcard. It reads "Oh well, we has sweet tempers anyhow". I'm sure many of us felt a bit plump after eating chocolates and more yesterday!

GRACEFUL RIDER

(Eighth in a series of Tuesday Stories)

I have often felt in my life, especially when I was younger, that there were new adventures waiting for me if I didn't let the "norm" restrict me from trying. In the 1970's, that was true about motorcycle riding. If you were a female, you were usually classed with Hell's Angels types if you showed an interest in bike riding. And even then, most of the women rode on the back as a passenger, not as the driver. I, however, thought riding a motorcycle would be something that was great fun and as soon as I was able, I purchased my first bike. I've had three in my lifetime, all Hondas - 2 450s and the last was a Honda 600. I absolutely loved driving those motorcycles! I quickly found out that the most dangerous things were other drivers on the road, they either did not see you, or they did not care. I never "laid my bike down" (had an accident where I was thrown from the bike) but I did have a few close calls. The only accident I did have was when a large produce truck stopped quickly in front of me, and I ran my bike up under his truck and damaged the headlamps and the front wheel.

There was such freedom in riding a motorcycle. During my early years of riding, our state had a helmet law (which is a good thing) and when they repealed that, I took every chance to ride without one. I will say now that was very dumb, and in another story I will tell you of a very close call I had without a helmet. But at the time, I enjoyed the wind in my face. I wore sunglasses of course because with the wind came bugs, and being hit in the eye by a bug at 50 miles an hour can cause real damage!

The above picture was taken by a friend as I was getting ready to dismount the bike. To be honest, I also enjoyed the attention of seeing double takes from people when they realized that the motorcyclist was a female. I rode my bikes to classes, to church and to work, and enjoyed the cheap fuel economy. It was less enjoyable when it was raining, or very cold, but I usually had a car to switch to when that happened. 

When I met my husband, he had moved in next door to me on the Isle of Palms. My roommate and I had become friendly with him and one day he wandered over into our yard while I was oiling the chain of the 600 and doing some other maintenance. We chatted and after I was finished, I said "Hop on - I'll take you for a ride." He sort of backed away, shaking his head and mumbling something about riding being dangerous. "Oh, it's easy" I reassured him, "Just act like a sack of potatoes and lean into the curves as we go around them. I promise I'll drive slow and we won't go far." He very hesitatingly got on the back, put his hands at my waist and we took off. Very shortly I realized that he was as stiff as a 2 by 4 and all tensed up. I began hollering back "Relax! Relax! You're going to make us fall over if you don't lean in!" He tried, but he seemed not able to let himself go. 

After we had returned, I learned two things: 1. That was the first time ever he had consented to ride a motorcycle (and never rode one again) and, 2. He had always hated motorcycles! He only did it because he liked me.

I had been saving to trade my bike in for a Harley, but when I started dating, and then became engaged to John, I gave up my motorcycle willingly. He was more important to me and it wasn't a hard decision to make. I have missed it from time to time, but as I have gotten older it's just a pleasant memory. Earlier in our marriage I had told him I was going to get a Harley when I turned 60, but instead that year I became ill with the ME/CFS so even though I am slowly improving I don't think my reflexes are as good as I would like. Maybe there are motorcycles in heaven, and I will be able to ride with no fear of laying my bike down!