When a person in a family is diagnosed with a debilitating disease or condition that person isn't the only one who suffers. It may feel like it at the time and you may feel like you are the only one who is going through it but it just isn't true. The families of people like me suffer. The toll it takes on the kids alone is amazing. They have to grow up way before they should. That innocence is lost somewhere along the way. I know my kids went from having a mother who was there for them and did things for and with them to having to be the ones to do for me. I just couldn't do the things that I did before and I couldn't get up and just be there for them. At my worst I was bed bound and just couldn't be there. When I was first injured my kids were 5 & 8. It should have been such an innocent time for them. Instead they saw mommy hurting all the time, a mommy who was crying all the time (I of course have one of those conditions that dr's just don't diagnose early. They make you think it is all in your head and that you are crazy. You start to believe you are crazy),a mommy who was not "their mommy". I heard that one a lot. I think the worst was the day my daughter who was 14-15 at the time told me to let her do something instead of her brother who I had asked because as she puts it "I already destroyed her childhood and not to do that to her brother". I have never felt more crushed, guilty or horrible in my life. It was like she had slapped me in the face. No matter how she tried to explain it away after she said it (she realized after it was out what she had said) there was just no way to deny that in a lot of ways she was right. I had taken a lot from her. I had taken the innocent child's play away and replaced it with taking care of mommy. Not fair for anyone let alone a child. My youngest will never know what a real mommy is like. She was born after this condition rendered me completely disabled. Her mommy will never run with her, take her to the beach, dance with her. Her mommy will never walk, will never be able to just pick her up and swing her in a circle while we laugh till we are dizzy. I am stuck living out of a recliner. I spend my days there and because of the pain I even sleep there.
Our spouses are forgotten about many times while we are suffering but the stress, pressure and pain that they feel is real and enormous. My first marriage didn't survive my injury and then my rsd (not that is was doing great before my injury). I did meet a great guy on line and we have been married almost 5yrs now. He married me knowing all the things I would never be able to do and that is a lot. What he goes through because of me amazes me and humbles me. I wonder what he sees in me that makes him want to deal with all he has to. Let's face it, it isn't like I can go out and do things with him (I do when I can but not like a "normal" person), I don't do much around the house & I can't work. All the money that comes into the house comes from him, all the driving is done by him, most of the housework is done by him, most of the cooking is done by him....I think you get the picture. I am unable to drive because of the medication I am on so he does all the driving. Of course none of my dr's that I need to see on a monthly basis have evening hours. This means that once a month at least he has to come home early from work to take me. This means leaving the job early which most bosses do not like. I have seen my husband passed over at work because of the days and hours he has had to take off because of me. He would deny it but I am not blind. I saw what was going on and he never once blamed me (I guess I did that enough on my own). Thank God he is at a job now where they are very understanding. They aren't penalizing him because he has a cripple for a wife. The stress he is under dealing with everything and then watching me in pain and knowing that there is nothing he can do for me must be huge. I wonder what makes him want this. No matter what the reason our spouses suffer right along with us(at least the good ones do).
We can't forget our parents, siblings etc. My mom put her life on hold for 3 years when I was first injured. She got me through the initial injury, the fight to get diagnosed, dealing with the diagnosis and search for the right treatment for me. She was there for my kids. She took them and picked them up from school, she drove me to all my dr's appointments, surgeries, therapy. She took me grocery shopping, took the kids to there dr's appointments, soccer practice and the list goes on. My mom cooked a lot of meals for us and did a fair amount of house work before going home and doing it all over again at her house. She was my rock while I was still in my first marriage (my ex was not going to put his life on hold or change it in any way to accommodate my new condition. It really didn't make an impact in his life at all). After my divorce and a brief stay at my mom's I moved in with my new husband. I now live too far away for my mom to be able to come everyday. It was time to let her get on with her own life. My husband takes care of me very well and now she can move forward. My mom was affected, my dad and sister was affected because my mom was with me so much. I am sure that they felt left out and abandoned. I feel guilty over that. Not only that they felt that way and I was "taking over" my mother but also because I really did take over my mom. I had to. I didn't have anyone else. I know my mom felt helpless because she knew what kind of pain I was in, she saw the sleepless nights and the pain of not being able to do for my kids and there was nothing she could do to help me with that. All she did for me and she wasn't able to do the one thing I know she wanted to do the most and that was to take my pain away. She wanted what every mother wants, to protect and shelter you kids, to take away their pain. I know with my own kids it doesn't matter how old they get, the instinct to protect never goes away. If I could take away any pain my kids are feeling I would. But, we can't. I feel bad when I can't take away the pain of a skinned knee or a broken heart. I can't imagine what it would be like to watch one of my kids go through what I go through everyday and know that there is nothing I can do for them. To know that the only thing I can do it to be there for them to lean on and just watch. How my mom does it, I just don't know.
For everyone who has had to suffer, stress out, feel left out. For everyone in my life who has been there for me, helped me, was a shoulder for me to lean on. I thank you from the bottom of my heart. There are not enough words to describe how much it has all meant to me. There is not enough time to write about everyone and everything that they have done for me. From surprising me with a scarecrow and pumpkins in my front yard just to cheer me up to loving me with all my problems and handicaps. THANK YOU!!!! I LOVE YOU ALL.
So, you see we are not the only ones who suffer and deal with things. Our families and the friends that do stick with us go through a lot also and deserve to be recognized.
Friday, April 22, 2005
Saturday, April 02, 2005
Freedom !!!
For the last 10 yrs someone has always had to be there when ever I went out. I was on crutches in the beginning and then in a wheelchair later on. Because of the RSD and the Fibromyalgia (that is a whole other story for anyone who does not know what it is. I will post on that later), arthritis & carpal tunnel syndrome(I know I have a lot wrong with me. I used to be somewhat healthy but once RSD set in so did a lot of other things) someone had to push me on my bad days and on my good days they had to be near. I tend to over do things when I finally feel like going out. I just kept going and all of a sudden I wouldn't be to push the wheelchair another inch. If I tried to move no matter how short the distance I felt like I would die, I knew I would die. Right there in the middle of Wal-mart I would be found dead if I tried to push myself even an inch (sounds very melodramatic I know but to me it was real. very real). My body felt like it was just shutting down. I would be stuck wherever that happened to be until my husband Joe or one of my kids would realize I was missing and have to come looking for me. My husband got me a cell phone and now when this happens all I have to do is call in the Calvary (unless of course there was no signal in that particular spot, then I have to sit and wait till I was found). Finding me in a store requires something like the game Marco-polo. I don't know how many times I would be stuck in a section of the store and would sit there and cry until someone would find me. I felt helpless, like a baby. I hated it.
I hated feeling helpless so much that it got to the point where I didn't want to go anywhere anymore so I just stayed home and this way I wasn't a burden to my family, especially my husband or an embarrassment to my kids (no, they never said I embarrassed them but I always felt like I did. I was a kid once too and I know how other kids can be when you are not just like everyone else. Having to push your mother through a store is NOT being like everyone else). I could not go out and just get my errands done. I had to pick 1 or 2 things I needed to do the most and that was all. If I tried anymore I paid the price for the next 4 days or so. This made things hard on my husband. I can't drive and haven't been able to since my accident, so after working a full day and driving over and hour each way to and from work I would need to go out. I had to go out more often to get everything done since I couldn't do it all in one trip. Not only did I pay the price for just going out, I felt guilty for making my husband have to go out so often. I didn't want to do this to him so a lot of the things that I wanted to do for me, like go to the craft store during a big sale I would just not mention to him and cross it off my list. I would just do the "have to" things and not the "want to" things. It got to the point where Joe was doing most of the shopping himself. It just became too hard on me and on him having to come home, get me, load me, the kids and my wheelchair up, drive to the store, unload me, the kids and my wheelchair, play numerous games of Marco-polo to find me. Many times Joe would be pushing me and pulling the shopping cart with our daughter in it. When it was time to leave he would have to load me, the kids and my wheelchair up, load the groceries up, drive home and do everything all over again. That was only if I went to just one store. How he managed going out with me as much as he did is beyond me. It seems more like he was performing an Olympic feat than a shopping trip.
Christmas shopping or Birthday shopping for my husband became a challenge because he was always there. He would see something on the check out counter and make comments like "why are you getting these?"or "who is this for?". That is when I discovered shopping on the internet, at least for all his presents. I have done 85% of my Christmas shopping online for the past 2 yrs. What a life saver, literally, for my husband and myself. The only problem with this is that I was not getting out of the house anymore. In a lot of ways I was happy about that. I know that it was unhealthy for me to lock myself away in the house but I just didn't care. I couldn't even get myself dressed most days so going out was just too much on me. Our house became my haven, I spend 90% of my time in my recliner in the living room. To me it seemed the perfect option, my husband could rest when he got home from work, the kids wouldn't have to push me or be embarrassed by me and I wouldn't "pay the price" for the next 3-4 days.
We finally got the answer to some of our going out problems. I just got an electric wheelchair...... WoooHooo!!!! I never thought I would be excited over something like this but boy am I ever. The first day out with it I was able to get through 2 big stores on my own!!!! Yippe !!!! One of those stores was my craft store that I was always crossing off my list of things to do. The only phone calls between my husband and myself on that trip was Joe calling me to find out where I was. I never realized how much freedom I had lost until I got a piece of it back. I can't explain how good it feels to be able to get through a store on my own after not being able to do it for almost 10 yrs. It was like being given back a little piece of myself. I want a much larger piece back but I will take whatever I can get.
I was real worried how I was going to get my daughter to the school bus next year and all the other things I am going to need to do with her as she gets older. This wheel chair has given me the freedom to take care of her. I know now that when that bus comes for my daughter I will be able to be there for her like a real mother. I was getting real worried how I was going to get her back and forth to the bus stop. I wasn't coming up with any ideas on how I was going to manage this. I was even considering home schooling her just so I wouldn't have to deal with the whole bus issue.
This wheelchair has given some of my freedom back but it has also added some problems too. I can't use it in the rain so if it even looks like it is going to rain, I have to use the regular chair. I can't use my cell phone when I am in the wheelchair. If I do it will destroy the insides of the phone somehow. It is big and heavy so it has to be taken apart and put back together everytime I use it. If we are just going inside a store for a short time or it is a small store then I use the regular chair. It is just too much work for Joe to have to go through all that for a 10-15 min trip. We need to carry both chairs when we go out because of all this and that takes up a lot of room in the car. This chair has given me back some freedom back but like everything in life it costs too.
I hated feeling helpless so much that it got to the point where I didn't want to go anywhere anymore so I just stayed home and this way I wasn't a burden to my family, especially my husband or an embarrassment to my kids (no, they never said I embarrassed them but I always felt like I did. I was a kid once too and I know how other kids can be when you are not just like everyone else. Having to push your mother through a store is NOT being like everyone else). I could not go out and just get my errands done. I had to pick 1 or 2 things I needed to do the most and that was all. If I tried anymore I paid the price for the next 4 days or so. This made things hard on my husband. I can't drive and haven't been able to since my accident, so after working a full day and driving over and hour each way to and from work I would need to go out. I had to go out more often to get everything done since I couldn't do it all in one trip. Not only did I pay the price for just going out, I felt guilty for making my husband have to go out so often. I didn't want to do this to him so a lot of the things that I wanted to do for me, like go to the craft store during a big sale I would just not mention to him and cross it off my list. I would just do the "have to" things and not the "want to" things. It got to the point where Joe was doing most of the shopping himself. It just became too hard on me and on him having to come home, get me, load me, the kids and my wheelchair up, drive to the store, unload me, the kids and my wheelchair, play numerous games of Marco-polo to find me. Many times Joe would be pushing me and pulling the shopping cart with our daughter in it. When it was time to leave he would have to load me, the kids and my wheelchair up, load the groceries up, drive home and do everything all over again. That was only if I went to just one store. How he managed going out with me as much as he did is beyond me. It seems more like he was performing an Olympic feat than a shopping trip.
Christmas shopping or Birthday shopping for my husband became a challenge because he was always there. He would see something on the check out counter and make comments like "why are you getting these?"or "who is this for?". That is when I discovered shopping on the internet, at least for all his presents. I have done 85% of my Christmas shopping online for the past 2 yrs. What a life saver, literally, for my husband and myself. The only problem with this is that I was not getting out of the house anymore. In a lot of ways I was happy about that. I know that it was unhealthy for me to lock myself away in the house but I just didn't care. I couldn't even get myself dressed most days so going out was just too much on me. Our house became my haven, I spend 90% of my time in my recliner in the living room. To me it seemed the perfect option, my husband could rest when he got home from work, the kids wouldn't have to push me or be embarrassed by me and I wouldn't "pay the price" for the next 3-4 days.
We finally got the answer to some of our going out problems. I just got an electric wheelchair...... WoooHooo!!!! I never thought I would be excited over something like this but boy am I ever. The first day out with it I was able to get through 2 big stores on my own!!!! Yippe !!!! One of those stores was my craft store that I was always crossing off my list of things to do. The only phone calls between my husband and myself on that trip was Joe calling me to find out where I was. I never realized how much freedom I had lost until I got a piece of it back. I can't explain how good it feels to be able to get through a store on my own after not being able to do it for almost 10 yrs. It was like being given back a little piece of myself. I want a much larger piece back but I will take whatever I can get.
I was real worried how I was going to get my daughter to the school bus next year and all the other things I am going to need to do with her as she gets older. This wheel chair has given me the freedom to take care of her. I know now that when that bus comes for my daughter I will be able to be there for her like a real mother. I was getting real worried how I was going to get her back and forth to the bus stop. I wasn't coming up with any ideas on how I was going to manage this. I was even considering home schooling her just so I wouldn't have to deal with the whole bus issue.
This wheelchair has given some of my freedom back but it has also added some problems too. I can't use it in the rain so if it even looks like it is going to rain, I have to use the regular chair. I can't use my cell phone when I am in the wheelchair. If I do it will destroy the insides of the phone somehow. It is big and heavy so it has to be taken apart and put back together everytime I use it. If we are just going inside a store for a short time or it is a small store then I use the regular chair. It is just too much work for Joe to have to go through all that for a 10-15 min trip. We need to carry both chairs when we go out because of all this and that takes up a lot of room in the car. This chair has given me back some freedom back but like everything in life it costs too.
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