Have Hope

So as I lay in my bed tonight, I realize I have had a pretty good day today.  The storm has blown over and I now have almost all of my  “spoons” back.  Today I got through about half the day with a good amount of energy and went all afternoon without taking a nap.  So my energy levels are pretty much back up and I am no longer achy.  Right now I am thinking about how lucky I am to have good days, because I know some of you don’t get them.  I know what the bad days are like, they are terrible and you never know how long the bad days are going to last.  When I have a decent streak of bad days I start to get a little down and feel sorry for myself.  I want to be like other teenagers and stay up late or hang out after school but those bad days don’t allow me to do that and I feel like the only people who know how this feels are other patients with chronic illnesses.  So if you are going through a bad streak keep your head up and know that there are people out there that know how you feel.  There are good days waiting for you, just stay positive and continue fighting, you have got this!


The Spoon Theory

Turns out that this run did not just cause ONE day of extreme exhaustion and achyness, it lasted the whole weekend.  When i decided to go on this run I was not thinking about the amount of spoons I had left (if you don’t know about the spoon theory you probably do not have a chronic illness.) The spoon theory in simplified terms is the spoons represent your energy and a normal person has an infinity amount of spoons and patients with chronic illnesses only have a certain number, this means that we have to ration our energy out, but once your spoons are gone you are completely out of energy and there is nothing you can do about it because there are no spoons left.  Well needless to say that run took all my spoons.  I was pretty much in bed all weekend and had absolutely no energy.  But surprisingly this morning i woke up and got through about half the day with a good energy level.  Don’t take your good days for granted and remember when you are having a bad day that a good day will come back around😊

A “Workout”

So yesterday was a gorgeous day and I decided to go on a run.  YES an actual run!  With P.O.T.S, running is one of my biggest struggles.  I have not been very active since the end of tennis season, (last October) the reason for this being was every time I stepped foot on that tennis court I felt like I was fighting for my life.  It was a relief and good for me to finally sit down with the cardiologist and figure things out after the season was over.  But with me not being active my P.O.T.S got worse.  I had been on a walk here or there but had not really thought about running since then until yesterday.  It had been a rough and stressful week so I thought it would be good for me to get out and get some fresh air.  I started out walking and within a few minutes I was running, I was so proud of myself, this was until i got to the end of my road and I started to feel a little faint.  I pushed through it and told myself that I could do it, and ran a little bit more until I felt like my legs were about to give out, then I had to stop.  I continued down the sidewalk walking the rest of the way down and all the way back to my house.  When I got home I was so disappointed.  I noticed that my legs felt extremely heavy and the only way I know how to describe it is that I felt like my feet were bricks and it was so hard for me to get my feet off the ground and walk.  My legs felt like this for the rest of last night and then some this morning.  Today I have been extremely exhausted because I used up all of my energy last night to go on that run.  1 “Run” = A day of achyness and extreme exhaustion, and I didn’t even hardly do anything.  The thing that aggravates me the most is that the only way I can fix this is to continue running at least once or a couple of times a week to build up my stamina.  Which means I have a lot more days like this ahead of me…

We know that P.O.T.S is DEFINITELY bitter, but SWEET, how?

P.O.T.S. is obviously a very bitter disorder.  Everyday is a constant struggle.  Whether the struggle is to run at tennis practice, wake up in the morning, walk up a flight of stairs, or simply just stand up. It is different for everybody but one thing we all have in common is that everyday is a definite struggle.  I have been fortunate to have a somewhat mild case of P.O.T.S, but I know that for some that is not the case. When I was diagnosed the cardiologist told me to try drinking sports drinks and to increase my salt intake.  We figured out that having a gatorade or a salty granola bar helped temporarily but most definitely not long term.  While at my next visit with the cardiologist we had come to the conclusion that my case had not improved but had gotten worse.  I was then put on medication to increase my blood flow.  The medicine is definitely increasing the flow of my blood, but I am still trying to figure out if it is helping overall.  I still seem to be very tired all the time, but I am currently out of school for Christmas break.  My observation of the medication will be more accurate once I am on a schedule.  I have read stories where people with this disorder have to go to the hospital every morning to be given an I.V of saline, while they are on medication, increasing the salt intake, drinking sports drinks, and much more. The only reason I consider my case of P.O.T.S. to be even the most tiny bit of sweet, is because I know it could be a lot worse.  I decided to start this blog because today has been one of my bad days dealing with P.O.T.S.  When I hear from someone else that they are going through the same thing it gives me so much more hope.  I love to hear about how other people deal with this disorder, how they treat they’re symptoms, and just learning more about my disorder from other P.O.T.S. patients.  I hope at some point with this blog I can help or inspire one of you and let you know that it is possible to live with P.O.T.S.



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