Well it sure has been awhile since I posted something new! It is because of good and bad reasons. The good reason is that I have started my internship at an organization that helps urban youth. It is really fun and exciting to be able to intern this summer. It is, however, extremely tiring! I have not told my organization that I have POTS, nor did I give any hint that there is something wrong with me. I just put on the front that I am perfectly normal like everyone else. So far so good. I have to move around a lot and work for several hours a few days a week, which makes it very difficult for me to do anything else beyond my interning. I come home and I am completely exhausted! But, one the bright side, at least I can intern!
The not-so-great reason why I haven't posted in awhile is the fact that my symptoms are still around. I am always exhausted whether I am interning or not, my joints and muscles are achy, I have a lot of eye pressure in my right eye again, I experience a lot more headaches, and I still get easily overwhelmed. Sometimes I have tremulousness in my hands especially. The fatigue is definitely the worst symptom though because I want to do so much, but I am not able to do things I want to do. I really truly rely on my medications to get me through the day since I am so fatigued. I wish there was an energy drink or a magic pill that I can take to eliminate the fatigue. It would make my life a whole lot easier!
My family and I also went on a vacation to Disney World! We walked around for several hours each day when we were there. I went on a ton of rides too! I would not have been able to survive that trip without the help of Disney's Guest Assistance Card! The card tells the "Cast Members" to allow me and my family to use alternate entrances to rides and attractions so that I did not have to wait in lines. If I did not have the card, then I predict that I would have been miserable --dizzy, lightheaded, nauseous, and even more fatigued! The card was a lifesaver!
On one of the last days of the trip, though, I was so extremely fatigued and did not feel well. I kept pushing through it so that I was not missing anything, but that might have been a bad idea. Because I pushed through my symptoms, I was very very exhausted and my symptoms were then exaggerated because of it. I had a pounding headache, had trouble staying awake, and was very overwhelmed. The bright lights and loud noises associated with the rides and attractions at the parks, along with the chaos of crowds of people, set me into a state of what I call "Sara the Zombie". When I feel this way, I am very quiet, have trouble staying focused, am indifferent to what is going on around me, and I feel drained. It is as if my brain just tells me it wants to shut down for awhile and go on "hibernate mode". My mom and I went back to the hotel room when I felt this way so that I can relax in bed without the chaos of being at the parks. I was able to have my body rest in an environment that was quiet, semi-dark, and cold. This helped a lot. It was very annoying to me that I had to leave the fun of being at the parks so that my body can recuperate! It was not easy for me to leave the rest of my family while they went to go have fun. But, I know that if I were to stay there, then I would not feel very good.
I had an emotional breakdown because it feels as though I am plateauing in my recovery process. It feels as though I am at a standstill with improvement. It just feels like I am living my new "normal". I have felt the same way for such a long period of time now without a great deal of improvement. I still am extremely fatigued and experience all of the symptoms that I have in the past. It is a challenge for me to accept that I am feeling this way and even though I am working so hard to feel better, I am not feeling any better than I have felt in the past. Yes, I do not experience as much pain as I have in the past, but the fatigue is what bothers me the most. The fatigue is just as bad, if not worse, than when I was first diagnosed with POTS. When my family and I went on a vacation to Disney World in 2008, I was not diagnosed with POTS. The doctors thought I still had Myasthenia Gravis. I was able to stand in lines for a while without having to lean on the walls or sit on the handrail because I was dizzy or fatigued. I did not have to take a lot of breaks or continuously go on rides to keep my adrenaline level high so I didn't feel as fatigued.
I just feel that overall I was not as symptomatic in 2008 as I am now. I do not know if I am just remembering incorrectly about what happened in the past or if my POTS is really worse now than it was 4 years ago. I do not know whether the new medications are working, but I do know that I am not happy with being so fatigued all of the time! I want to get better, and I will continue to work hard to get better! I am not giving up, nor am I depressed about not having more positive results. I am just frustrated and more driven towards receiving better treatment and better results!
