I hate to post the struggles of people with autoimmune disorders because I don't want to seem like a negative person, but I think it's important for people to understand what these people go through on a daily basis. I have been experiencing a lot of hidden frustration the past 6 months due to my fatigue. Lately it has been so bad that it's causing me emotional distress as well. Let's take yesterday for example:
I woke up first thing in the morning to get ready for doctor 1 of 3 this week. My appointment went well (other than the ignorance of the doctor hurting my feelings), I stopped at Dunkin Donuts to grab a coffee and a donut before heading to work. By the time I got to work upset stomach number 1 of the day had kicked in (which I won't explain in detail). After making my stop at the bathroom I no longer had any desire to eat my favorite donut (chocolate frosted), so I put it aside and started to work. It wasn't long before the girls in the office started to discuss what we should order for lunch. Though I still felt sick to my stomach I knew I had to eat something so I reluctantly ordered a calzone. In the mean time I was so annoyed at the fact that I felt so sick that I decided to call Dr. M's office to talk about obtaining a copy of my blood test results with hopes of determining whether any food allergies had been tested out of my 16 tubes of blood. The receptionist agreed to mail the results to me but as soon as I hung up I got to thinking about my next appointment... If I receive these blood results and there is no sign of a food allergy test, I'm going to have to wait until November to discuss it with Dr. M. Though that doesn't seem like a terribly long period of time, it is when you live all day every day with nausea and an upset stomach it feels like forever. So I decided to call the receptionist back to see if she would be able to tell me whether or not I had any food allergy tests done and if not I wanted to know if it was OK for me to go see my primary care office to get that done ASAP rather than waiting until November. Once I was informed that no food allergy testing was done I decided to call and schedule and appointment with my primary office. Lunch was delivered and after taking a few bites my upset stomach was screaming at me to stop. So I boxed the food back up and decided I would wait until the feeling passed before I attempted to eat anymore.
I look forward to my appointment with the APRN this week and hope that she can help me. Meanwhile I continue to work for the day and other than feeling nauseous I felt OK. I made it through a full day at work (with a donut and a calzone on my desk) but as soon as I got into the car to drive home I felt the fatigue hit me like a ton of bricks.
When I got home I felt so exhausted and so nauseous that I had to lay down out of fear that I might throw up if I didn't. Well... laying down resulted in falling asleep for a solid three hours. When I woke up I laid there thinking about all the things I needed to get done before I went back to bed for the night. Throw a load of laundry in, eat something, send my advisor an e-mail regarding the issues I am having with my field placement, and read an overwhelming amount of material for class on Wednesday. I knew I had to do these things but I just physically could not get myself to get up. I still feel exhausted, I just want to lay here, I wish I had someone here to just throw my laundry in the wash for me and get my computer and reading materials that are literally right across the room. I know I need to eat so I figure I'll start there. What should I eat? Well I'm afraid to eat anything at this point because I am afraid to feel sick again and again and again. I wish I knew what was causing it. I know I should try to eat something healthy, maybe something with no soy or gluten, but there is nothing in the house right now that would enable to me to do that. I could go to the grocery store, but that requires much more energy than I have, and I would still have to come home and prepare it. Extremely frustrated I decide to eat toast for dinner. I put my laundry in the wash and sent out the e-mail I needed to send. I started to feel accomplished that I at least got these things done. I decide to keep my reading for tomorrow night.
As I get back into bed disappointed with myself for not doing my reading I started to cry. I'm not sad, but frustrated. I have always been such an ambitious person, a go getter. I am not lazy, I want to get things done, but I feel like I can't. I am at a point where I am afraid to eat anything, I can barely do the simple every day tasks that I used to, and I feel like no one understands at all. I feel alone even though I know I am not because I have the most amazing friends and family that anyone could ask for. I just don't know how to explain how I am feeling and the frustration over the simplest things. I dread going to bed because I know that when I get up in the morning I am not going to want to carry out my day. I feel alone so I cry.
I am not terribly sick and I do not want anyone to feel bad for me. I am a very strong and resilient person and I will get through these rough patches. I guess what I want is for people to understand that that though people may not be visibly sick or in pain, the struggles are still there and they still affect my life a great deal. I now have to think about things that I never had to before, I have to pick and choose what I can do for the day because at this point I can no longer do everything I used to be able to do, and I have to reconsider all of the food and drink choices I make. It doesn't seem so bad, but if you don't have to do it thats why it doesn't seem so bad. My heart goes out to everyone in the world who suffers from any illness. I have what you could consider "minor" struggles and I am having a difficult time both physically and emotionally, I can only imagine what it must be like for the people who live in pain everyday or in terrible sickness.
**I found this article in an on-line Hashimoto's support group - though my situation is not as severe as the girl who wrote this I think it is a wonderful explanation of what it is like to live life sick and exhausted, it helps me to realize that the feelings I am going through right now are warranted. Please take the time to read it.**
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/
No comments:
Post a Comment