One of my best friends in the world, fellow blogger, and fellow POTSie, Heather, wrote this message to my family and friends on the Facebook group created for my trip to Dallas. There are few silver linings to being chronically ill, but becoming friends with her has definitely been the top one. There are days where if I didn’t have her to text with, I think I’d have gone crazy! There’s something really specially about having someone who you not only mesh well with, but who understands almost exactly what you are going through. So here it is:
I am a fellow POTS patient and although I have not gone through the treatment YET I can say that stress effects my life just like an infection or the flu would. It isn’t something that I can easily shake off. Stress takes me weeks to get over. Not only does the question “how are you feeling” cause me stress it also makes me feel like I have an expectation to answer a certain way. Everyone wants to hear that I have progressed! And usually the follow up question to my answer is “why do you think you are feeling like this, what did you do”….putting more pressure on me that I caused this! How I feel changes like the wind so it is such a perplexing question anyway that can’t be easily answered. I also know that there are tons of family and friends that love me but asking me that every time I see them or talk to them makes me feel as if they do not notice my actions. If i am absent from their lives…I feel bad! If I am present in their life…I feel ok enough to be there and am hoping to get more positive energy as a result. I need to do fun things that make me feel like I am still participating in life!!!! Believe me, if I were able to work, go to the grocery store on my own, go to a movie with my kids, etc I would and there would be no reason for people to ask me such question. I also think about my health a great deal of the time when I am alone. I am tracking symptoms and trying to determine cause and effects. Chronic Illness can become me if i am not careful!!! Many days because I am mostly bed bound I have little human interaction so when I do get to talk to people talking or thinking about my health is really the last thing I want to do. It is a total mood killer! I want to hear about how my nephew said the funniest thing or that my cousin won that contest or that my brother went fly fishing. Hearing and experiencing the joys of life help lift my mood. My family thought originally that them talking about these things would make me feel worse about my life and how limited my abilities were. Absolutely not! It helps me to feel included even when I can not physically be there. I want to see the pictures and hear the stories. I want enough information that if I close my eyes I can sense that I was there….see it, hear it, feel it, taste it! I know I can not eat that birthday cake but I do remember what it taste like and just recalling the memory is awesome!
The other thing that I would like to say from a patient perspective: Having things done for me that I should normally be 100% capable of doing (washing the dishes or folding clothes) is something I need help with but it isn’t something that I usually will ask for. Who wants to do their own laundry much less someone else’s?!?! But there are only so many spoons (energy) to go around and my kids/family deserve that energy more than the dishes do. I do have to choose one thing over another very often! Jackie has texted me on so many occasions saying that one of her family members came over and did something for her. She is soooo appreciative. You guys are awesome and I love each of you and haven’t met any of you just because of the amazing things you already do for her. What I will continue to ask you to do is to continue to help her with those kind of tasks so that she doesn’t use her new energy on the chores of life but that she can reserve her energy on the joys of life… like Emma and Jake and making memories. You will likely see her up more but she needs to be doing things that she enjoys thus setting off all kinds of good chemical reactions in her body that just fuels her recovery. It is our human nature to think that she is able to do x, so she should be able to do y. But it is going to take time for her to be able to do x and y! Jackie is not shy about telling us what she wants us to know via Facebook or her blog. We generally hear about it anyway so let’s let her tell us and us tell her the JOYS of life.