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Since the last comment we received on the house was that it smelled of cigarette smoke, we've begun smoking on the back porch. If I wasn't living in "Hell" as my friend Don pointed out (it's hell because it can't get any hotter than here) smoking outside wouldn't be that big a deal. As it is, with temps in the 90's to 100's, just the short time it takes to smoke a cigarette is enough for you to melt completely. I'm hoping in time my FMS and CFIDS return to some sort of normalcy for me. But, as the days turn into weeks, and the weeks turn into a month, my hope is fading. Most people with FMS or CFIDS eventually see and end to their "flare" as the doctors call it. Once mine start, they never seem to subside. They just stay that way until I experience another "flare".   It has been a year this month since I began this battle, and I'm anxious and scared as hell now that it's nearing the end. For me, it's not a matter of the money. God knows if I get SSD, it will be a tiny amount. What has been important for me throughout this whole process is the need to be vindicated. If I can prove to the U.S. Government that I am disabled it helps to dispell the myth that FMS is an illness which is "all in your head". It proves that FMS is a real illness and that those effected with it are sick! Yesterday my Mom and I went to a few stores in search of food and other necessities. Being in a wheelchair full time is difficult enough without the added presures of trying to get around in and out of stores and buildings. So many places do not have access ramps, or automatic doors. Without these ramps I can't enter a building. Trying to open a door and get a wheelchair through by myself is also very difficult. As I was coming out of a store alone yesterday, I noticed a man that seemed to be in his early 30's approaching me from the outside. He saw me attempting to get through the first set of doors by myself and intentionally moved down the set of doors to the one farthest away from me and entered the building there. As he passed by me struggling to get out the door alone I said quite loudly..."thank you SO much for your help." He never even looked at me. Navigating through doors is only part of my problem. There is also the problem of trying to navigate in the stores. Either the aisles are crammed full or people are standing in the way, with or without shopping carts. You'd think seeing someone approaching in a wheelchair would be reason enough to move aside and let them pass by. Oh no! Usually not only do I have to say "excuse me please", I have to say it several times, louder each time. Growing up my Dad used to joke that there should be a "people day". Afterall, there are special days set aside for the hunting and killing of assorted wildlife, why not people! We would all laugh when he'd suggest this in jest. However, the longer I live, and the more frustrations I have to deal with from thoughtless and rude people, the more I think it doesn't sound so silly. Rather, it sounds quite fitting there there should be a day set aside where we are allowed to take our frustrations out on those around us. I can honestly see why you have those amongst us in society that buy or steal a gun, go to a high vantage point and just start pulling the trigger. Yesterday was our first "Open House" on our home. It was scheduled for 2-5 pm. This meant for three hours I had to find something to do with myself and Jack. I'd decided to go to my Mom's and take her to Georgia shopping. We'd gotten an early start and made the hour drive in no time at all. We arrived at the outlets. I got my wheelchair out of the trunk to go in and shop, when I noticed it was tilted. Upon further inspection I noticed I had a flat tire. I carry a portable air compressor in the trunk, so I got it out and set it up. After a few minutes of nothing happening I knew something was terribly wrong. I found a gas station and asked the attendant if he could help. He said, "Ma'am, I'm afraid it's the inner tube". When I asked if I might be able to get a new one around the area he just shook his head. I got back in the car. My mom was less than pleased to find out I hadn't been able to get the tire fixed. We ended up having to turn right around and come back home. An afternoon totally wasted. Today I went to my medical supply store and had an inner tube put on my wheelchair. While I was talking to the salesman, who also is in a wheelchair, he said he always carried a spare in his car. I decided that sounded like a good idea to me, so bought one as a spare. While I was there, I also asked if there was something I could use to walk with in places that aren't wheelchair accessible. He said my only options were going to a walker, or using forearm crutches. Since I'm a woman, and vain as hell, not to mention having an instant dislike for being stared at, I opted for the crutches. I tried the pair they had there, youth sized, and I was amazed at the support and control that I had. I never hesitated on the price, I just told him to order me a pair of adult sized ones. For me, the most difficult part of FMS & CFIDS is learning to constantly adjust. Ajusting your life, and your lifestyle. It's been years since I've been able to do heavy type work, and about 2 years since I've been able to do minor things. I remember the feeling of discouragement and depression I had when I had to start using a cane to walk. When the time came for me to graduate into a wheelchair part time, the feelings of discouragement and loss of self esteem became even worse. Two years ago the wheelchair became my constant companion. Rarely am I able to walk anymore, and when I do I'll now walk with more assistance. I frequently have people who write to me and say how do you do it? How can you put up with all the changes to your life and keep going? Little do they know how I'm feeling inside. Only my closest, trusted friends really know what I feel. It's the love and support of these people, along with the love and support of my mother and brothers that's gotten me over the rough parts of my life. My mother has always said that it was good that none of us had the foresight to see how our lives would turn out. If we knew beforehand all the trials and tribulations we would have to face, we'd never have the strength to handle it. How true. I know for me, my constant worry is my declining health. I've seen myself decline faster and faster as the years go by. After 20 years of fighting these diseases I'm almost afraid to wonder what another 20 years of this will do to me. And I wonder....will I still have the strength to fight? Although part of me knows that I'll never be "normal" again, there is always a part of me that still hopes. There is also a part of me that is still disappointed by the unending decline of my health. As a younger person I was always very active. I loved sports. My favorite sport was probably volley ball, with baseball as a close second place. It's so hard for me to sit and watch any type of sport and not feel the threads of depression wrapping it's fingers around my soul. Watching sports is a constant reminder to me of what I'm unable to do. To see the look of happiness on the players faces and watching them enjoying themselves depresses me. I guess it's for this reason I try not to watch any type of sports. I also get the same feeling of depression when I watch small children at play, and see babies. Being unable to have children has always left me feeling empty inside. When I'm around my nieces and nephews I feel as though they are mine, and for a short time it helps. But before long they go home and again the emptiness closes in on me. It's for this reason, and many others that when I'm in public and see newborns, or see little children at all, that I become meloncholy for a child of my own. Many times over the last 12 years of marriage I have considered adoption. Probably if I'd have thought I stood a chance of being given a baby I would have tried. I guess another reason I never tried was that I knew my husband didn't want children. One of the reasons I picked him in the first place was because he didn't want his own kids. Knowing I was unable to have my own, the last thing I wanted was to constantly fight over the same topic throughout my marriage. In one way I'm glad I didn't have children. Now that I've decided to divorce my husband. I'd hate to have to drag a child through this process. I spend long hours alone now thinking of my life. Of the choices I've made and of the consequences of those choices. By never attempting to adopt I've doomed myself to a life alone. Trying now would be a cruel joke. No one is going to give someone like me a baby, and it's probably just as well. I have a hard enough time taking care of myself alone, much less a baby. I've just finished a book entitled "Three Wishes" by Barbara Delinsky. This was a wonderful book and one that still has captured my thoughts long after I finished reading it. I keep wondering what my life would be like if I were to be given three wishes. What would my wishes be, how would I know what to wish for, and lastly...would that 3rd wish be worth dying for? (In the book, once you've been granted the third wish, you die.) I know my first wish would be to escape the FMS & CFIDS...that's an easy one. What I'm not sure of is what would come next. I keep hearing my Mom say..."be careful what you wish for, it might come true one day." When I awoke this morning I felt slightly better, but still not great. The added aches and pains of the cold made me feel even worse than my normal. I was really looking forward to spending the entire day in bed resting. So much for that idea! At 10 am I got a call from the realtor that someone wanted to show the house at 1:45 pm. Since my new crutches were in, and my driver's lisence needed to be renewed before next Tuesday (my birthday), I planned to do that while the house was being shown. I was sitting at a red light on my way to the medical supply store when out of nowhere I got rear-ended. I pulled the car into the median and walked back to see what damage I had. That's when I saw that the man who'd hit me had been rear-ended himself by some woman. We all stood around for 40 mins while we waited for the city police to show up. Once the cop had gotten our statements and drivers info, he turned us loose with a paper to show up in court Oct. 6th at 2 pm. With a pounding headache I drove to the medical supply store and got my crutches. Then I drove a few blocks more and got my license renewed. My last stop was at State Farm to report the accident. I was told that since the woman who'd hit us all hadn't reported the accident yet, I was to do so. Three 800# calls later I had it reported. Now I just sit here with a splitting headache to go along with the body aches, fever, ear aches, coughing and congested head. I'm hoping tomorrow turns out to be a whole lot better than today has been ! At this point in time everything in my life is upside down. I'm still not sure if my house will sell, and if it does, when. I'm still living with Preston, although in separate parts of the house. I still have no idea when we'll ever get our separation agreement drawn up and when one of us is going to move out. My SSD hearing is coming up and I've been trying to deal with that. Then there is my recent accident that has taken over a part of my worries. I have to appear in court the 6th of October to deal with that. Not to mention the cold that continues to hang on and won't go away. Add to that, yesterday was my birthday. I spent the morning of my birthday sitting in great pain, at my lawyer's office while we went over the SSD strategy for my upcoming hearing Oct. 13th. The afternoon was spent on the couch at my Mom's watching a video. I remember as a kid, the whole family being there with cake and ice cream, lots of your friends to help celebrate your birthday. My Mom did her best to make it seem like my birthday, but it just didn't work. For some reason yesterday seemed like someone had died, rather than someone being born. Maybe it was the fact that I don't stand a real good chance of getting awarded SSD. Or maybe it was the fact that lately I've felt like such a loser. When I began the fight for SSD it was for the money. Not long into the process it no longer became a fight for money, but a fight for dignity, and vindication that FMS was real. My Mom keeps saying that if I don't get the SSD it isn't the end of the world. Maybe not, but it will be the end of a year long battle. A battle which has virtually stripped me of any shred of self esteem I ever had. It's a terribly discouraging process to have to tell complete strangers, yes, I'm unable to do anything for myself. To be reduced to begging for something which is rightfully yours to begin with. If I'd known in the begining it was going to be like this, I would never have tried to get it. | ||||||||||
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