Three years have passed me by. While I've learned a lot about myself, and the condition I have, I've come to find that I just don't care anymore, about any of it.
I'll continue treatment, I can't handle the pain I have w/meds, let alone without. The pain, symptoms and progressions are never-ending and relentless. I'm tired of it all. I have no choice but to adapt to whatever comes my way because my faith will not allow me to give in and give up. My faith will not allow me to take myself away from it all, no matter how much I really want to.
I'm so tired of putting a smile on my face everyday so those around me don't bail on me. No one wants to be around someone who's miserable ALL the time. So, for 3 years, I've continued to smile when all I feel like doing is crying. I'm tired of no one being able to understand what's it's like to live the way I have to, each and every day of my life. It's not anyone's fault they don't understand. If it meant anyone would have to suffer the way I do in order to understand, I'd rather they not understand. It doesn't make my situation any better that they don't understand though.
I've tried focusing on the positive. I do have positives in my life. However, the functionality and independance I've lost are with me everyday. There's no way to escape the many things I'm unable to do, or the person I'm unable to be. I don't want, or like, being the person who suffers from so much pain, who can't walk, who can't drive, who can't go anywhere without depending on the mercy of others, and many other can'ts. I don't like being the person who can't!!!!!!
Today is a beautiful day outside. I'd love to get out of the house, no matter how much pain I have. I'd love to go to the beach. I have no one to take me and my hubby hates the beach. Before, when I felt like going to the beach (it isn't often), I'd get in my car and go. Not today, today I CAN'T go. It doesn't matter that I'm in a tremendous amount of pain, it doesn't matter that the pain will be worse both during, and after, going to the beach.
Preparing for the trip alone is very tiring and painful. Since my hubby won't take me, finding someone else to take me is very difficult. It takes too much just to get me, and the electric/heavy wheelchair, in and out of the car. Realistically, Mickey is the only person who will, and does, bother with the wheelchair. I thank GOD for Mickey and appreciate all that he does with all my heart.
Speaking of the wheelchair. There were so many people who said, if you had a manual chair it would be much easier to manage. I heard things like, we could go here, go there, do this, do that, blah, blah, blah. I have a manual wheelchair. I've had it all summer long. The only time it was used was to take my daughter-in-law to lunch one afternoon before summer. I digress.
It's not only having/needing assistance (being pain-free is out of the question) that keeps me from going out, or doing the things I'd love to do, and things I really miss doing. I hinder myself most of all. My desire is most often greater than my actual ability. In my heart, I want to do many things but when I try, most often I don't succeed.
I don't like letting the pain keep me down. I try very hard to fight the pain and do things regardless. When I do things, no matter how small, I'm the one who has to pay dearly for it both during, and afterward. Most times, the pain is so excruciating that no matter how hard I try to will myself up and out, it just doesn't happen. I HATE IT!!!! I hate letting the pain win.
Most times. when I think of going out, I have an internal struggle with myself. This is the fight against the pain, or the fight against my emotions. A fight against my emotions because when I do go out, I have to smile and be happy so those around me, 1) don't feel bad about letting me talk them into taking me, 2) don't get upset w/me for the same reason, 3) don't stop taking me on outings or 4) most important, people around me can enjoy themselves wo/worrying about me.
If people feel like they have to worry about me, they might not be so willing to take me along any other time. If people pay for events, I'd feel really bad if they couldn't enjoy themselves because of me.
Three years is a very long time to have to depend on others. Only I know how hard it is to depend on others. Only I know the many things I've gone without, or without doing, because of how hard it is to keep asking for everything, or for someone to do this or do that. I'd only ask out of sheer necessity and that's not a good way to live. IT'S AWFUL!!!!!! Even asking for things out of necessity makes me feel like such a burden to others. It's not a matter of how the other person/people feel. It's how I feel. Three years is much too long to depend on others.
I try doing many things for myself, no matter how hard it might be. All I get for it is more pain, and an increase of other symptoms.
All these issues, and many more, are just too much to deal with day in and day out. No one knows, or understands, this better than I do, or more than I can. I try to live one day at a time. Each day still consists of the same issues and/or concerns. I'm seriously too tired of it all, everything. All I want to do, all I need to do, all I can't do, blah, blah, blah.
I HATE LIVING THIS WAY, I HATE WHAT THE EFFECTS OF SM HAVE DONE TO ME. I HATE THE ME THAT I'VE BEEN FORCED TO BECOME. I HATE NOT BEING ABLE TO CHANGE THE PERSON I'VE BECOME DUE TO NEVER-ENDING, AND RELENTLESS, PAIN AND OTHER NEUROLOGICAL SYMPTOMS.
Life goes on but I just don't care anymore. Why should I? The pain and suffering will only continue.
Please continue to keep the sufferers, and caregivers, at ASAP in your thoughts and prayers. Thank you all.
I hope everyone is having a terrific weekend!!!!!
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5 comments:
Your not alone, they be others out here who face the same things, all of them may not to the same degree, some even more so. I use to have a smile on my face most of the time, but it seems to have got up and left, along with the attitude I carried with me all of my life until Chiari entered my voubclary. You mention faith, my faith is what keeps me going. I know this will be fore just a little while, that wonderful place on the other side where there will be no more pain nor sorrows, it will be for eternity. Yes, that "Blessed Hope," it keeps me going. Prayers!
Jerry
You are not the only one facing life in a power chair. there are many others. i have been living with a power chair for so long i lost count of the years. i spent 6 years without being able to drive, then after much prayer and thought, i went out and bought an adapted van that i could drive. it scares me every time i get into it. i just let God guide my driving and help others stay where they are safe.
i waited 20 years, going from dr to dr trying to get a diagnosis and the sm just kept progressing. once they figured out what it was, they shunted it and that did slow the progression. i often have to ask for help. most folks are glad tht i ask because they want to help but don't know what to do. it hurts more when folks are too busy to help, but i know they have to have their own lives too.
i cry often when i am by myself, but i too try very hard to stay positive whenever i am around others. one reason you didn't mention - others are facing their own challenges too, but those challenges are a tad easier for them to cope with when they see that i can cope with what challenges have been given to me. i don't do it alone, i have friends and family, and most of all my faith.
i hope this helps you to know you are truly not alone. mine is just one small story. there are many smers who could tell you their tale as well. we try to support one another because only another person with sm can even come close to understanding. please keep on asking for help, and keep visiting the message board where you can talk to others with similar issues. i'd be happy to write you via email if you are interested.
sheryl
You're not alone there are many of us that face the same challenges on a daily basis.
Giving up is not the answer. Keeping a positive attitude is the best things you can do for yourself.
If you need a ear I'd be glad to listen. I'll keep you in my thoughts and Prayers.
Jacki
I just love that someone has the guts to tell the whole world how it hard it is to live with SM, this is me, same thing you're feeling inside and how you're suffering. I've suffered for 11 years now. I feel and suffer the same way and when we complain, people think we are weak and no one wants to listen to us. The most frustrating thing is we've lost so much but because we're not yet paralyzed and we don't have holes in our necks yet that people are not so sympathetic because our pain is all invisible. We maybe in wheelchairs but when people find that we can get up, they look at us like we're pretending. They have no clue what we go through.
We are strong people not what they think we are- weak. I'm tired of it all, too you know!!!
Good luck to you, more power to you and good job on your site!!
I've only suffered the knowledge of knowing I have SM for three weeks.... It is all new to me and I already hate it. Things are hard for me too, but I'm a great faker. Like you said nobody wants to be around a miserable person all the time. My thoughts and prayers are with you.
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