It's a hard to say "no" most of the time to people ... It's hard to have the same miserable answer for every question which entails how you're doing and feeling ... It's hard not to feel guilty ... It's hard to feel like you're screaming at the top of your lungs and not being heard ... It's hard to disappoint people on a regular basis ... And, it's hard to accept the fact that your body no longer does what you want it to, or feels like you'd expect it to feel at thirty years of age! Learning to say "no" and not feel guilty about it has been a really tough life lesson, but as the years march on, I am becoming a pro at it. One thing that makes me so frustrated with all of this, is the insinuation that in some way, shape or form, one actually enjoys being and feeling sick the majority of the time.
Before I became ill with my auto immune diseases, I was only dealing with my spine condition, Spondylolisthesis, and it's various related issues. I had my surgeries when I was 15 years old, and afterwards, for about 8 years or so, I functioned pretty normally. I had little pain in comparison to before my surgeries, a considerable larger degree of energy compared to the present day, and of course, no additional crazy symptoms (ones that can stop you dead in your tracks, like chronic nausea, extreme fatigue and fevers). Even in this glorious state of physical being I once enjoyed, I still had to pace myself; being careful not to over do things so I didn't throw my back out, or become overly tired from the resulting pain. But, all in all, I was pretty darn healthy, and certainly very active considering the severity of my spine condition. I worked two part time jobs during high school and college, and went to school full time. I also had enough energy, and general sense of well being, to conduct the rest of my life without blinking an eye or thinking twice. My apartment was always emaculate, even with three cats and a very messy boyfriend. I had an active social life and spent a lot of time with my family as well. I even had the time and ability to throw in a few of my favorite hobbies, along with my intense workout schedule, which topped off at 3 hours a day, 5 to 6 days a week.
Yes, I felt pretty darn good during that time and I couldn't conceive of how one might struggle to do the most basic things like bathing or folding laundry. But, even during this period of time, I found that I couldn't do it all, or at least as much as some others did/do. Many people worked full time and went to school full time; something I was unable to do myself. I was fortunate enough to have a supportive family who helped to pay for my college degree, and I am very thankful for that. During the last two years at UW I decided to stop working (as I wasn't making much money anyways and I was able to do better in school if I was in less pain, therefore, more rest and less stress was required). While I was grateful for all I had, especially my ability to walk following my surgeries, I still struggled to some degree and couldn't simply compete with others in many regards. I remember talking to this one girl after class and sharing pieces of my life and story. I revealed that I was not working, along with a comment about how I was doing in the given course we were taking together. Her reply was full of sarcasm and attitude, and really took me by surprise. She said "Well, if I was as lucky as you are and didn't have to work because mommy and daddy paid for my school, then I'd be doing as well as you do too." This comment bothered me in a number of ways, but most specifically, it irritated me because if I could, I would have traded my less than stellar body for her healthy body in a heartbeat! I told her as such and she seemed to understand, at least I'd like to think she did. I would prefer to be healthy, pain free, energetic, etc., and therefore, able to work and go to school full time, verses not!
In the past few years, as my illn