On Wednesday, I took a trip up to Moncton to see my allergist/immunologist. The last time we saw her, she gave me two new medication to try that worked fairly well to stop my allergic-type reactions. I was still having hives but the itching had subsided immensely which I was very grateful for. Then, about a week ago, they just stopped working. One of them made me feel like a zombie on top of not being too effective so we decided to cut that one from my regimen and we’re adding monthly injections instead, woohoo!

Afterwards, since we had already driven an hour and a half for what turned out to be a 15 minute appointment, my mom talked me into to doing something I haven’t done in ages: go shopping. I desperately needed some new summer clothes that actually fit and a dress or two for my sister’s graduation events coming up soon. I was pretty wiped already but, since the selection is much better in Moncton than at home, I agreed to go.

In order to make this excursion feasible, my mom pushed me around in a wheelchair while we shopped because my poor little legs definitely could not handle all the walking. My mom also, being the superstar she is, helped me when trying on clothes in order to expend the least amount of energy possible. We ended up finding some great sales and I got lots of cute new things that are very comfy since my days are mainly spent lounging around. It turned out to be a pretty good day.

However, part way through the shopping trip, the fatigue hit. When it hits, it hits hard. The whole drive home, I could barely keep my eyes open (causing me to sadly miss seeing the mysterious wild chicken/pheasant/whatever on the side of the highway that my mom pointed out). And, when I got home, I just crashed. I spent the rest of that day and the day after in bed trying to recharge. I definitely overdrew on my spoons for the day.

That trip was really an eye-opener as to how bad my physical state is right now. Sure, I knew I was weak, but not that weak. I knew that I get fatigued easily, but not that easily. I knew that physical activity amplifies my joint pain, but not that little activity. This is a huge contrast from my previous, very active, self. It has left me wondering where I go from here, especially in terms of my education.

Academics has always played a huge part in my life; not because my parents pushed the importance of academic success, to the contrary, they simply encouraged my sister and I to do our best. The drive to succeed came purely from myself; I’ve always had a passion for learning. Knowledge makes me feel empowered. It’s a wonderful feeling to understand even just little bits and pieces on how and why the world works the way it does.

Having to take a break from school has most definitely been tough. There’s a lot of days where I miss feeling smart, where I feel like I’m falling behind. My goal ever since I realized a break from school was necessary has been to get my health under control so I could get back to school. Last summer, I was aiming for that fall. Then, when that didn’t happen, I was aiming for winter semester. Now, I’m aiming for this fall semester, only 3 short months away.

Now, I’m seeing the enormous amount of progress I need to make in order to reach that goal. If I can’t handle being pushed around the mall for 2 hours and then need at least a day to recover, how will I handle sitting in a lecture hall for 3 or more hours a day, multiple times a week? How will I manage to do lab work which take a lot of physical exertion? How do I make this happen? I have serious mountains to climb first.

The biggest piece of frustration for me is that I feel like I’m always waiting; waiting to get stronger, waiting to get more stamina, waiting to improve, waiting to feel better, waiting, waiting, waiting. The waiting game is never a fun one to play but is made even harder when you see no progress being made. Quite frankly, I have made almost no progress since my 2 month long admission last summer. I feel as though I’m in the exact same place I was then, the only difference now is that we know why my body is doing what it’s doing.

All this frustration has lead to a party, a pity party. Yes, I’m frustrated. Yes, I’m tired. Yes, I should try and be positive. But, yes, I think it’s also important to acknowledge how I’m feeling, even when those feelings are negative rather than just burying them under the rug. It may seem as though I’m always happy and positive and, most of the time, I am. But I’m also human. I feel sad and mad and angry and frustrated too.

I just keep reminding myself that my present situation is not my final destination.