Living with Muscular Dystrophy is a challenge, I am not going to pretend it is not. It sucks, it really really major league sucks. It takes away your freedom and dignity, it makes you unable to do things everyone else takes for granted, everything takes a long time, and there are a lot of compromises, both in your personal life but also in your marriage.
I miss my freedom, it was so nice to just go to the mall or the lake or to a friend's house on Sundays when Tom was watching the Vikings. We were both content doing something we liked to do on Sundays. Now one of us always has to compromise, I know that if I ask Tom to go to the mall, or anywhere else with me on a Sunday afternoon during football season, that he is compromising. I compromise on Sundays when I would rather be taking a walk by the lake but end up at home watching football.
We always have to plan things more carefully than other people, we have to consider whether or not the place we are going is a place where I can get in with or without Tom's help. Stairs are really a struggle and I do not attempt them without Tom's support, simply because it is not safe. Every time there is a possibility that we may run into stairs I have to take into consideration whether or not the occasion for braving the stairs is worth the effort. One of the main deal breakers is "will there be people I don't know there?". If there are a lot of people I don't know, I will often stay home simply out of embarrassment. Do I need to be embarrassed? No absolutely not, at least that is what the rational part of my brain tells me, but unfortunately, the irrational part of my brain, the one in charge of ego my ego and emotions appears to be the stronger one. I don't think it is an issue I will overcome anytime soon. If we decide on doing the stairs I put on my happy face and pretend that it doesn't bother me EVEN though my heart is breaking on the inside.
There are a lot of helpful and understanding people out there, and I believe that 99.99999% of the population means well. I am working on learning to ask for help, and on directing people how to help me. It is a reality check every single time. It is usually in Dr's offices and places like that, and I have to remind myself that it is their job, and they really don't care. They are always friendly and I appreciate every single one of the people putting up with me time after time. I do, however, DESPISE unsolicited advice. Unless you are a really close friend, my Dr or husband, do not come up with suggestions as to how I can do things better, to me it indicates that you have been staring at me in what most people would consider an embarrassing situation. You probably mean well, but to me it is humiliating and painful. It does not increase my self esteem!
All right, sometimes there are good things as well, the MD has indirectly caused me to never ever be late for anything, it takes so long to get from the car to where I am going that I always leave at least 15-20 minutes more than most people would need.
I have also developed an appreciation for the smaller things in life. If you asked me ten years ago if I liked to clean and organize my house I would have said hell no. But now I appreciate it every time I am able to clean something, especially things that are supposed to be hard. Yesterday I cleaned all the glass surfaces in the house, they look awesome, I was sore and tired when done, but I think most people would be. Last week I swept and washed all the tile surfaces in the house. My newest project is to clean up our laundry room. To you guys it is just a chore, but to me it is a blessing that I am still able to do it. Remember that next time you dread scrubbing the toilet bowl. Please do not consider this en offer from me to come and clean your house!
Have a great weekend, take care of yourselves wherever you are, and remember, no unsolicited advice when you see someone struggle, hold the door open, ask if you can help, but do not offer advice.