tkgoodspirit

Hey Ya'll!

I think most of you here know about all of my "ailments" . And I just had to answer this thread.

When I first started gettting lower back pain and then the FM, I was still working and I got a lot of support and sympathy because of my back pain, but trying to get people to understand the pain and symptoms of the FM was more difficult. I was very lucky to have worked with the most wonderful caring people, managers included, for nearly 9 years. I was a waitress at a Cracker Barrel. I loved my job. I loved waiting on people, bringing them their food and taking care of them while they were in my station. I had a lot of "regulars" some I still see and hear from (even tho it may be through a third party) today, over 2 years since I left my job.

I continued to go into the "Barrel" a lot whenever I could after I quit. I live in southern Alabama on the gulf coast, and the restaraunt was in Florida, just across the state line, so I'd go in there after a doc's appt or whenever I found myself in town. I still wandered around the kitchen and dishroom, visiting the cooks and the other staff. I missed my job and my friends a lot. I would sometimes even get to see some of my "regulars" and get to visit with them.

However, I think the past year or so, I have lost touch with most of those folks. I haven't gone into the "Barrel" in months. Mostly because I have been feeling worse these past few months. I recently was dx'd with CFS, which has made me more tired, and my back is so much worse, I have to sit sideways in my car to drive. I have some nerve damage in my back that may be permanent, and I can't raise my right leg, I've got that mummy kinda shuffle going on when I walk now, unless I use my cane. So I'm like a lot of you, housebound. I would LOVE to volunteer. I want to join a pro-literacy program to teach people to read, or volunteer at the NICU to help rock babies, but I can't commit to anything cuz, one, I can't drive very far, and also I never know how I'm going to feel when I get up. I know many of you can relate to this for sure. This is why most of us can't work. We can't commit to a routine. Not too long ago, before I got sick, this is NOT where I saw myself at this point in my life. I really thought I'd be working a couple of shifts, volunteering more, and if possible, my ultimate dream was to join the Peace Corps. My how things change.

I used to get phone calls, emails and visits, but they have dwindled. I don't live near where I grew up and still have some old friends there in Iowa who I DO see whenever I make it back there, which is absolutely wonderful. I cherish those "highschool" friends, to me, they are the best.

But I miss my friends terribley. I have one good friend who does come to see me and call me whenever she can. She's the best. Actually, just last week she came by and brought an older woman who she had taken to a craft store that day. Well this woman, probably near 60 came in the restaraunt a lot and I waited on her often. It was so good to see her. She has RA and FM. But the friend who frequently calls and visits is a blessing. I love her dearly. Every Easter I get a little basket, every holiday she brings me something. And during Christmas, I have her and another friend come out and we exchange gifts. The other woman is a very good friend, but I haven't heard from her in so long. I write myself notes to call her, and I keep forgetting. I know her, I think she's waiting for me to call. Which is the other issue. I think I should probably not wait for them to call me, I should call them more often.

We did go out for dinner on my birthday right before Christmas and the one friend said to me, "It's amazing to me how good you look for all that's wrong with you". See it's right there, you look good, so it's hard for people to understand there's a war going on inside of you. I usually look pretty bad actually, but I do dress up nice when I want to, and that's what everyone sees when I go visit the restaraunt or I go somewhere with friends. Of course they see the pain from my back when I try to sit, stand or walk, but they don't see the FM, the CFS, the Carpal Tunnel Syndrome, the Myofacsial Pain, feel all the trigger points that are inflamed on my upper back, the Cervical Spinal stenosis, or the spinal stenosis in my lower back, or the bursitis in my right hip, or they don't feel how sore my teeth are from all the cracks in them from clenching my jaw so tightly, nor do they see the tension headache, nor do they see the three lower lumbar discs that are herniated and torn, nor do they notice that I can't lift my leg, or drive without sitting practically on my left side with my leg laying a certain way so I can use the gas or the brake (kind tricky). It's all the stuff they can't see that is my illness. They can "see" the physical limitations I have, but not the pain.

So yes, I guess your life changes in so many ways. Many many ways, and we are left to try and work around that as best we can. But look at all the friends we have on this board. Friends can reach across so many spectrums of life, and yes, we do have many friends who only come into our lives for a short time and they are there for a specific reason. Think back, you will remember some who came into your life only for awhile and if you think real hard, you can remember why they came into your life at that particular time.

Oh and I had to comment on the exercising and CFS. I ran 10K and half marathons, lifted weights, walked, biked nearly 20 miles a day, did ALL that from my 20's into my 30's, and look at me now!

I can say this. My physical friends may have dwindled, some of that may be my fault in part. I need to email and telephone more, but I have many many friends here on the board, and you know what? That means just as much, more in some cases, to me than any of my local friends who are right here with me in person.

Thanks for the great thread! Great topic!


"We must be the change we wish to see in the world" Mahatma Ghandi

love,
tk