Posted on by LydiaA1614

Invisible Illness – One Trick Pony

PonyLately, 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…

Lydia!

(All images are royalty free from Graphic Stock unless otherwise noted)

19 Replies to “Invisible Illness – One Trick Pony”

  1. I’m with you Lydia. I have MS and picking the one trick is serious business. How I wish people would realize that if I am out, I’m not cooking. I’m not doing laundry. I’m not doing housework. If I’m shopping, I’m not going to the movies. It’s a delicate balance. The good thing, is that my husband understands when I am overwhelmed by color, noise, smells etc. He gets me out of there as quickly as possible. You find that planning how to walk and when to walk becomes very important. If overwhelmed, I stagger, look drunk. It’s embarrassing to me when people ask my husband how much I have had to drink. He tells them, “Not nearly enough.” Then explains. I have the 3 hour nap in the afternoon. I’m heat sensitive. It’s important to make sure you don’t shut yourself out of life. I’ll trade you Virginia heat for Canadian cool. Hang in there. It’s not that we are pessimistic, it’s that our lives take a great deal of effort so we don’t hurt ourselves.

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    1. Thanks, Ann, for sharing. I agree with you on all counts. My dear friend has MS and is plagued with vertigo. People just don’t understand that she has to look at them at eye level – not with them standing above as she sits or sitting beside her and expecting her to turn her neck. We are great together because we sit side by side and talk looking straight ahead. The only trouble is that it is difficult to find a time when both of us are up to a visit.We have a heat wave here so I will wait a few days before sending you some of our weather! I am on the west coast and we don’t get so cold here in the winter, but we can get the rain any time. The rest of Canada is hot in the summer and cold in the winter.Oh, and good on your husband. I love his response!

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  2. Hey Lydia. I can understand some of what you go through. I do not have chronic pain but am chronically fatigued. How you described the noise is also a familiar sensation for me. It doesn’t hurt my ears exactly, But after a couple hours or so, I just fade, the voices are too much, I feel overwhelmed and cannnot concentrate. When I was first ill, the voices of others around me say in a restaurant, did hurt. And I’m pretty much a one trick pony as well. Best of luck with everything. Keep positive and keep doing what you’re doing. You seem to deal well.

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    1. Thank you, Amanda, for stopping by and for your comment. I just read your about (I missed it before when I visited your blog) and impressed by your writing skills and education. The UBC course is indeed difficult to get into and I really wish you the best on that. I am sure you will get in considering your background and skill. I look forward to your novel when it comes out, which ever way you choose. The title is intriguing!

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      1. Thank you Lydia. Will see, I’m working on the UBC application. Have you tried? I could use any advice if you have it. The novel is coming, probably more after the MFA application is complete. Thanks for commenting as well 🙂

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      2. I applied to UBC many moons ago and went to Saskatchewan instead. But I do know several people who are going there or have graduated from many levels of different programs. It isn’t as daunting as it can seem. If you have specific questions use my contact page and I will put you in touch with my best friend’s son. He is probably your best bet for help and wouldn’t mind a bit.

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    1. Thank you. The only reason I say things like that is because people who don’t understand read a post like this and only see how “awful” my life is. I want them to understand I live it this way to get enjoyment out of it! I am sad you can relate and glad you get it.

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  5. Pingback: My Journey To Vibrant – Day 37 |

      1. He washed shaved and dressed himself every day bar two weeks in the last four years. Because he looked good, no one knew he had not one, but three concurrent terminal illnesses. A stronger willed man we’ve yet to find. The day before he
        died, dad walked to the front door, a man he knew passed by, dad knew he could go no further and rested on the doorframe, when stan said “morning Fred how are you my friend” his reply was “Fine Stan, better than some Stan, now don’t be hanging about in the cold get yourself home to your family and tell them we asked after them all”. Dad smiled and you know what … he came in and made us a cup of tea. 2014 said goodbye to the best of man. 😇

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