Lately, I have been reading a lot of articles and blog posts about how the chronically ill are viewed by others. The problem is not that we are perceived negatively but quite the reverse.
Recently I have had several people tell me how good I am looking. That should be, and to a point is a compliment. I do agree that I am looking better because I am getting a bit of exercise and have lost a little weight. A new product I am trying is also helping with the inflammation of my joints and muscles.
Where the problem lies is that while a chronically ill person may look “better” on the surface, we are still feeling rough on the inside.
The reason for my title, “One Trick Pony” is I called myself that to Hubby the other day. We were trying to figure out how to work out our schedule which included going in one direction to get our special gluten free bread and another to meet up with his parents for lunch. Hubby had figured it out time-wise how we could do it in one morning before he went to work. That is when I said I was a “One Trick Pony”, I can only do one thing in a day.
Lunch yesterday was wonderful. We met at our usual Chinese restaurant which serves good food and is roughly half-way between my in-laws and us. We had a great time talking and catching up. I also ate more in one sitting than I usually do in a day! On the surface everything was great.
However, the radio was blaring out of a speaker that sounded right above me while a construction worker was in the next shop tapping glue off the floor with a hammer. The sound resonated through the floor of the restaurant. Then another table filled up in front of us and the three men were talking. All these “noises” melded together and felt like “pain” to me. This often happens when I am in a pain flare or am particularly fatigued, both of which applied here.
When my in-laws arrived, I was able to concentrate on them and the food and things were better. However, when we got home I got Hubby’s sandwiches and drinks ready for work as he walked Violet. After he left I had a two and a half hour nap. Once I was up I made a fruit salad, cleaned up the kitchen and hemmed a pair of pants for Hubby.
Then it all hit the fan. I couldn’t sleep because my kidney(?) pain was in high gear, my head was pounding (probably because of the earlier noises), I was severely nauseated, my leg was throbbing and I was so fatigued but couldn’t get comfortable to sleep.
All of what I just described is “behind closed doors”. Few people see or understand that while I do go out and do things, there is often a price to pay for it. I, like most sufferers of a chronic/invisible illness do what I can to live a normal life even knowing what I have to look forward to.
I had to give up one last cake order. I had quit, but this was for my best customer and a good friend. I had promised to do her son’s first birthday cake and smash cake. I was so looking forward to it. As it grew closer I realized I just did not have enough energy or strength to do it, even though I wanted to. I feel very bad I let her down; however, both the cake and I would have suffered if I had done it.
I know some of you may see this as a negative post. Either that I am viewing others that way because they don’t understand or that my whole life is negative. Neither of these statements is close to being true. I may not like how I have to live and I do get frustrated; however, I have accepted it for what it is and do what I have to. As for others, if I didn’t have chronic everything I wouldn’t be able to understand those that do either.
I will happily continue on one “trick” at a time, and if I can help one person to see that I while I do appreciate (and I do) being told I look good, it would be nice to be asked how I am doing as well.
Oh, and in case you were wondering, I was looking for something in the freezer this morning and prayed that God would help me find one more loaf of bread so Hubby didn’t have to rush out to get it and could sleep in. Sure enough, there it was, hidden under a bunch of other stuff so I have enough to get us through the week. God is good…