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!!!!!