Have you ever heard someone refer to themselves as a Spoonie? Do you know what a Spoonie is?
I didn't know what a Spoonie was until very recently. I started seeing more and more people refer to themselves as a Spoonie as I connected with more chronically ill people online. One day a friend of mine on Facebook posted The Spoon Theory, written by Christine Miserandio. The article discuses how the author suffers from chronic diseases/illnesses. Although she doesn't look sick, her body is. Each day she (like many other Spoonies) faces limitations because of her disease.
The idea behind Spoon Theory is that those with a chronic illness or disease wake up each day with a certain number of spoons. Those without a chronic condition wake up with an unlimited number of spoons. Every time you complete a task it costs a spoon. This may not seem like a big deal, but someone with a chronic condition that limits their mobility may wake up to have 20,15,7, or even 5 spoons a day. Many of those of us with a condition like Pulmonary Hypertension must use a spoon for even the most basic of tasks. These basic tasks are often things that those without a chronic disease or illness do not need to think twice about. I suggest that you read Miserandio's article on Spoon Theory, but I will shortly explain it in my terms.
I'm not much of a spoon gal. I imagine myself walking around with poker chips, and although my chances of developing Idiopathic Pulmonary Hypertension was one out of a million, I ain't a millionaire. Instead, I have won the "crap" lottery. Everyday I wake up with X amount of chips. Lets say today I woke up with 13 poker chips. On this day I have decided to go out, so I will need to shower. Showering will cost me one poker ship. Now I need to blow dry my hair, that is another chip. I get dressed, that is half a chip (let's say half a dollar.) I go to the mall and walk around for 2 hours, we will say that is 5 chips. It adds up quickly huh? It isn't even 3:00 pm and I am almost out of chips. I'm really tired after the mall, and want to change into my pajamas- which are all the way up stairs. Stairs are very difficult to tackle with this disease, and my parent's house has large ceilings. That means I will be climbing 15 painful steps to go up stairs to my bedroom. This will leave me completely breathless, and make my heart pump so hard it feels like it is going to burst out of my chest. To go upstairs, clean my face, and put on my pajamas costs me another 3.5 chips. Each day I must ration my chips, and decide in advance what I will do that day, or how I will spend my chips. Plus, you always wanted to make sure you have a few spare chips up your sleeve, for "just in case."
It is difficult, I certainly miss being a typical 25 year old who could do whatever I wanted to without worry. My days of staying up past 10:00 pm and going to the bar with friends are long over- at least for now. I still have hope that I will continue to get better and better (and better and better....)
I do want to share that I am improving. When I was first diagnosed I needed a stool to sit down in my shower. A shower back then would have cost me 15 chips. I would come out completely pale and blue. I was done for the rest of the day. Now I am able to shower standing, and although isn't a brainless task like before, it is easier to manage. I am able to work out for an hour or two each day. This includes walking for an hour, and using an exercise machine where I must use my legs and arms to lift my body.
Before all this, I had really gotten into working out. As soon as I was able to stand again I started off really slowly. Starting with maybe 10 minutes of Wii Fit yoga, then 20 minutes, and eventually moving on to strength training. I am super determined to function as well as humanly possible with my diagnosis. Whatever happens, I will have no doubts that I didn't give it 150%. Even on days where I would spend hours bawling my eyes out, mourning the loss of what I thought my life would be like, I eventually pulled my butt off of my chair, wiped my tears, and did some light yoga. If you have Pulmonary Hypertension and want to work out, make sure you discuss what exercises would be safe and suit you the best with your PH specialist. I have an oximeter so I am able to make sure my 02 levels and heart rate are at a safe number for me while I work out. It is a great investment if you do not have one yet.
Although I have won the "crap" lottery I am very rich in other ways. My amazing parents help me with anything they can - they go above and beyond for me. My mother helps me take off tight pants and paints my toenails. If I am tired, my dad carries me up stairs- all the way up 15 steps. They have done so much for me. My boyfriend has been incredible through this too. I will save all this for another day when I discuss the role of caregivers, and how grateful I am for mine.