Well, three years ago I had an over abundance of energy and could do everything and anything with ease! When in need of anything my friends and family came to me. I was always there! You need a smile, I can bring one. Need a laugh, I come with joy in hand! Need some place to stay? Food in your belly? place for the holidays? Help with a bill? I will always be there. (still am come to think of it)
...... but now, I have a progressive spinal deformity and a couple of genetic problems that are making my life rather difficult.
In the beginning no one wanted to slow down for me. There I was, trying desperately to keep up! The comments, the pesky tones as though I was a hindrance of some sort. Goodness, who wouldn't withdrawal?
...I did tell them all what was happening. I told them everything my doctors told me. In the beginning I had no "visual ques" that I was "sick". I was treated so badly. My husbands family, his friends, my friends... even one of my neighbors.
I sought the assistance of a pain psychologist. But really, she just specialized in chronic / terminal illness. I learned to re build my life. My likes, my dislikes, who I was as a person and how I responded to myself. By that point I didn't really care about anyone out side of my little family unit. They obviously didn't give a gosh darned about me when I couldn't "fix, help, work, do et al" for them.
...Then some scary stuff happened. I began getting very short. Vomit at a drop of a dime. I couldn't see. Barley hear. Walking was hard. My "progressive spinal deformity" became VERY obvious. My right hip is hiked up, towards the back of my body and into my ribs. By the time my teeth crumbled out of my mouth in 2 months flat.. Lets just say that "shock" was an understatement. In all fairness, I did tell them I was sick the year before...
Here it is. 3 years now I have been "sick". By the time those people that ridiculed me (you wouldn't believe the comments I got in the beginning) got a big fat dose of reality and realized just what they had done... I was a completely different person. I am a different person. They don't know me. None of them. Their guilt is evident. I am truly sorry it is there. On the other hand if anyone of them really WANT to spend time with me they are more than welcome, the door is wide open. But MY door means MY pace. MY world. In my world it is slower. I take my time and truly enjoy every minute. I have new friends. New life. New family. Of course those that ridiculed and belittled me are always welcome. I forgive them, I really do. But it is their choice if they want to spend time with me. It is no longer "My choice to physically hurt myself trying to keep up in THEIR world". I know them all very well. When I buy gifts I know exactly what they will like, or know exactly what to make them. Do they really know me? No. But they are trying hard to get to know me now. It is a whole nother world when the people around you have no choice but to truly open their eye and see YOU for who you REALLY are.
It was hard. growing in to the "new me". I changed everything. From the ground up. I am ever so glad I did. It was hard. Moving on in my life with fingers pointed at my back. When I "looked almost normal" and they could justify their petty thoughts and actions. But, I had to press on. I had to become comfortable with who I was and life I needed to build. I literally didn't have time to waste trying to keep up with people who had no idea who I was as a person and what I needed.
I guess what I am trying to say is if you can.. find a good psychologist who specializes in chronic/terminal illness. So you can have step by step guidance to re-build the "new you". Work on just what you need, your likes, your new hobbies and recreational time. It does hurt to be away from loved ones and friends while focusing on you. During that time, if they know what is good for them, they will realize the severity of the situation and finally begin to take in your needs and your likes/dislikes in to consideration. Just work on you. What you need. The rest fall into place.
TWO roads diverged in a yellow wood And sorry I could not travel both And be one traveler, long I stood Chronic Pain ModeratorMail