I think for the most part my daughters and husband are supportive. My daughters are very young and still require constant care. Things that are happening to Mommy is all explained in terms that they can understand. I work very hard to make sure that my illness does not adversely effect their lives. They are very young. So, with them it is a collaborative effort between Theresa (Pedi), and myself. Of course my doctors are always glad to see them and answer any questions they have about Mommy. They like my spine specialist very much and she always helps to ease their minds when ever something has changed about Mommy. I always worry about the impact of my health problems on them.
My husband is very supportive. He comes with me to every appointment. Even before I lost the ability to see enough to drive. Gosh, I miss driving... In any case, I sign release forms every year so he can speak with my doctors freely anytime he wants. I know my doctors appreciate this as well because he is able to talk about things that have been happening or things he has noticed. I really wish we could be together more. He works 12 hour night shift though. So, by the time he comes home in the morning he sits down to the breakfast table, then goes to bed. I don't see him again until I serve him supper (his breakfast) in bed. Then he is out the door an hour and half later. When he is home with me during the day, when he has caught up on sleep, it is always nice to have him around. I need him to drive me places so I have to spend one of those precious days getting the errands run. I feel bad that I have to make him drive me everywhere. I always worry about placing too much burden on his shoulders.
I don't have family of my own. My husbands family is supportive for the most part. Early on, it was a rocky road... I think they try to understand as much as they can. They all live out in Florida. I am always feeling a little awkward because I just not sure quite how family dynamics work. I am still learning. Also, I am never quite sure how much of my health problems I should talk about? I don't want to worry anyone, on the other hand I always feel like I want to tell them. It’s a strange tug-of-war.
As for friends.. well, its hard for them grasp that I am very sick. I cant see very well. The last 2 months have been terrible on my vision, it will only get worse. There is no way for the surgeons to help me anymore. I just cant drive and do the things we once enjoyed. I avoid the phone like the plague because I have a very hard time hearing and the tinnitus makes it doubly so. I wish so much I could still go to the café! But it hurts quite a bit to walk. It is sheer stubborn will that I don’t go ahead with forearm walking canes. Even the kidney problems are making life very difficult. The fact is I am just not who I once was. For some reason it is hard grasp that I am just not the person I was before. In all fairness, its even hard for me to grasp and it is my body. I suppose I cant be upset about something that bothers me as well.
I think Family, Friends and co workers all effect my pain. There are times that it is positive. Like when I go wandering through the fields with my little Bumblebees to pick flowers, knowing I can walk back as soon as I become uncomfortable. When I sit quietly on the patio while my family eats breakfast, knowing I can take my time cleaning up once everyone is on off for the day. No expectations to get it done in a rush, not pressed for time. I think happiness does have a positive effect on my pain.
There is a negative as well. Times when those I love make my pain worse. When too many expectations are placed on my shoulders. Not understanding why I cannot do multiple labor tasks in the same day. Why I cannot attend a company party after a long day at a special event for the Bumblebees. Why I cannot chaperone an all day event. Instead having to donating supplies for the event because it is the only way I can help. ANother good example is helping by taking over a task or job. Not understanding why I cannot do their job long term. Not understanding why my "help" cannot continue long term.
These things do effect my pain. Physically, of course. Emotionally, mentally as well. I suppose in the end all I can do is try my hardest. Do my very best each and everyday to work with my body.