Lets Be Honest

Lets be honest...having a chronic illness sucks.

Sorry to be blunt, but honestly, there is just no other way to eloquently say that.

Not knowing how the day is going to go. Sucks. Taking pills and handfuls of salt before getting out bed. Sucks. Being exhausted just from getting yourself out of bed. Sucks. What else is there to say?

When you have a chronic illness, you go through a love/hate relationship with it. You learn to love it because it is your new way of life, but it does not mean that you don't have days where you just absolutely hate it. Honestly, who would love it just because they want to? I have learned to be okay with it, but I still have my occasional days where something from my personal or professional life is affected by having a chronic illness, and I just hate everything about it.

When I met my current POTS doctor, he told me I needed to be okay with myself when I had an episode, or just any rough day. At the time, I remember silently screaming, "Are you kidding me?! My body revolts against me on basically a daily basis and you want me to be okay with it?!!" I mean, who wouldn't be angry when they keep passing out or missing out on their life because a chronic illness has slowed them down?

However, my doctor has done this a time or two before, and I am pretty sure he knew what I was thinking, because his next statement was, "You are training your body to shut down and be upset every time you have an episode and you can't do that because this is your new normal." I left the appointment with a list of books to read to help me change my attitude and with some notes from my doctor. Bullet point number one was for me to start practicing positive cognitive behavior for any negative thoughts. At the time I remember joking with my mom saying I should just wear a rubber band on my wrist and for every negative thought I had, I should just snap the rubber band. We laughed about it, but of course there was some truth to the fact that I needed to learn to deal instead of just being upset.

I read all the books recommended by my doctor plus books that I thought would be interesting to help me deal with my chronic illness. The one book that did help me was a book called, How Can You Not Laugh At A Time Like This by Carla Ulbrich (the Singing Patient). She has several chronic illnesses and therefore has a different outlook on dealing with chronic illness and she kind of helped me start to be okay with my health and adjust to my new life living with chronic illness. I encourage you to read it.

Since that appointment with my doctor telling me I need to change my attitude (and reading everything I can on dealing with something like this), I feel that I really have changed my outlook on my life when dealing with POTS. The issue for me is, my life feels very stalled. One of my bigger hurdles that I face is my personal life. Whether it is making plans with friends, meeting new friends or going on a date. I have to really plan out my day before that night so that I have the energy to go out, even for just a couple hours. Or more than that, if I am on a date, when do I tell the person I have this chronic illness that affects me daily. Or the bigger question is, should I forewarn that person that I can't stand too long, but finish that statement with, "Don't worry, if I pass out, I will wake right back up as soon as I am on the ground." It sounds hilarious when you write it out like that, but it is frustrating that there is so much truth in just that one sentence. And that specific sentence can terrify someone who has never been around anyone with a chronic illness. While that is my biggest hurdle, others in my support group face other issues. For instance, the parents in my group, have to learn how to save their energy to spend time playing with their kids and spending time with their family.

Since my illness has gotten worse, I have learned three big things: 1) I will always have a love/hate relationship with my illness; 2) It is important to find your own way of coping with a chronic illness; and 3) While having a chronic illness is not fun, it helps you find an inner strength in yourself that you might never have found if you hadn't been diagnosed with said chronic illness.

So, yes, having a chronic illness sucks, but it is how you learn to deal with your chronic illness that helps you get through it. You have to learn to separate yourself from the people that just cannot deal with your illness. It doesn't matter if they are friends or loved ones, their negativity towards you and your illness poison your own mind and body and will have an overall affect on you.

So, my final thoughts are: Be true to yourself. Give yourself a break. It's okay to have negative thoughts every now and then; and Always remember to celebrate the small victories that you have each day, whether it is going to the store, hanging out with friends, taking your dogs on a walk or even just getting out of bed. Because while those may be trivial things for a healthy person, they are huge victories for a POTsie or anyone with a chronic illness.

So, let me tell you about last night...

So, let me tell you about last night...

I set fire to a grill. Not a normal fire that you would expect to see when grilling, but a fire I wasn't sure we would be able to control.

Let me explain. My mom has a grill that can also be a roaster or a smoker, it's official name is The Big Easy. She keeps the accessories for it inside the grill and when we go to grill we just take the basket out before turning on the grill. Unfortunately, I forgot to do that last night and I ended up creating a huge fire because the stuff inside was burning. Every time we opened the lid, the air from outside would just fuel the fire more. Eventually, the fire did die down, but the whole incident opened my eyes to the seriousness of brain fog.

Obviously, last night was terrifying and overall very upsetting. For lack of a better word, I feel stupid (even though I know it isn't necessarily my fault). I just keep thinking about how I could forget to take the stuff out of the grill when I have been doing it for years. Two words. Brain Fog.

Brain Fog or the more medically appropriate term, cognitive dysfunction, is the loss of brain function when it comes to thinking, remembering, reasoning and concentrating on a daily basis. Vanderbilt University's Autonomic Dysfunction Clinic has found that 80-90% of POTS patients suffer from brain fog.


It is important to know, POTS patients are not the only ones who suffer from brain fog. In fact, most chronically ill people suffer from some sort of brain fog with different degrees of seriousness. An even more interesting statistic is that a completely healthy person can suffer from brain fog. However, when brain fog happens to a healthy person, it is exhaustion and it is excused. For people suffering from POTS, studies have shown brain fog can happen from prolonged standing (and sometimes prolonged sitting), dehydration, fatigue, lack of sleep and fainting.

Up until last night, brain fog wasn't really something I worried about. Of all the POTS symptoms I tend to deal with on a daily basis, brain fog has never affected me too much. The only issue I have ever noticed was I would not remember talking to my mom about a specific topic. Suffering from memory loss, forgetting safety issues or having trouble functioning on a daily basis has never been an issue with me and my experience with brain fog. In fact, most POTS people I know laugh at brain fog and talk about the funny incidents that have happened when trying to interact with their family and friends. The fact of the matter is, chronically ill patients go through so much you have to be able to laugh when you can at silly situations.

I'm lucky. I'm lucky to have a mom who is understanding and knows what I am going through. I'm very fortunate the fire did not get any bigger than it did last night. I am blessed to have a neighbor who is a firefighter and could come check out the fire. ;-)

I didn't write this post to scare anyone. I wrote it to inform people. Like I said in previous posts, I want to share what I go through so maybe other chronically ill people can know they are not alone in the sometimes daily trials that people with chronic illness can go through. The fact of the matter is, I have been doing fantastic health wise. Of course I am going to have a few setbacks, and I am going to go ahead and count last night as my one set back for the month. Brain fog is a serious issue and I hope I have helped shed some light on the subject so those newly diagnosed with a chronic illness and their loved ones will know it is not an uncommon issue.

Why?

Why is this happening again? Why me? How am I going to do today?

These thoughts are what I think about on a daily basis, at least 10 times a day. Back in November, I wrote a post in this blog about how far I have come along since my first surgery 5 years ago. To look at me now, you would never know I ever got any better. To be honest, I think you would wonder why I ever thought I was better.

I have Postural Orthostatic Tachycardia Syndrome (POTS). Dysautonomia International defines POTS as a form of orthostatic intolerance that is associated with the presence of excessive tachycardia and many other symptoms upon standing. For those of us without a medical degree, that basically is saying the elasticity in my vessels is not there to help push blood from my legs back to my heart, which means the blood pools in my legs and after so much time has passed then I will pass out. Usually, once I am flat on the ground and my legs are on the same level as my heart, I wake right back up.

To try and prevent one of my episodes from happening, I drink at least 130 ounces of liquids a day. I try to make sure a majority of those liquids have some sort of sodium in them because I also have to take six extra grams of salt a day. You know how people tell you to watch how much you salt your food? Ya, that isn't an issue for me because I need all the salt I can get. On top of the liquids and the extra salt intake, I also wear compression socks to help push the blood back towards my heart.

I was diagnosed with POTS several years ago. I ended up being referred to a specialist at Vanderbilt in Tennessee who performed a tilt table test on me to officially diagnose me with POTS. A tilt table test is where you get strapped down to a table and they tilt the table to where you are perpendicular with the ground. Essentially you are standing, but you are strapped down so that when you do pass out you don't fall down because you are strapped to the table to keep you up. During this test they take repeated blood pressure and heart rate readings. If your heart rate jumps more than 30 points then you have POTS. After all of this, I was put on medication and I learned my limitations for dealing with this issue. No one would know I had this particular issue, unless I fainted from pushing myself too far.

Like you have probably read from my other posts in this blog, I have other health issues. Every time I start having stomach issues, or any other health problems, my POTS gets out of control. When that happens, I know I need to go get checked out. Last spring, my stomach started hurting every now and then, but I just dealt with it and moved on. In the fall of last year, I reached my breaking point. I started going back to the doctor and doing the necessary tests to start ruling issues out and work towards a diagnosis. At some point, my doctor felt the next step for me was to go directly to the Emergency Room. He was worried about my kidneys and if they were working properly. Of course, the ER was much more concerned about all my episodes of passing out than they were with my kidney function. Because the tests they did ruled out any issues with my kidneys.

Fast forward to now, I am back in St. Louis living with my mom. I sleep in the same room as my mom, and rarely drive because my POTS is out of control and I no longer get the warning signs I used to get before I pass out. I rarely drive, because lets face it, that is just a hazard for not only me but anyone else on the road with me. I wear out easy too. If I have plans to go out at night, then I don't do anything during the day. I have to save up my energy to be able to actually put the effort into getting ready, and doing whatever the activity is and still make it home and be able to have enough energy to put myself to bed. I have always had to think through each activity I do during the day to ensure I have enough energy to actually get through my day; but, I was recently just told there is actually a good example for those who don't understand why I can't have a day full of activity. It is called The Spoon Theory. I encourage you to read this if you want to know the struggles of people living with a chronic illness, like me.

The point of writing this post, is not to complain about my issues. Because while I definitely am not the healthiest person on the planet, I know there are people much worse off than I am. I know that everything happens for a reason, and when this medical roller coaster started years ago I thought I had been given these rare medical problems to help shine more light on the rare issues that I was going through. While I desperately wanted to do this, at some point life got in the way. Once I was better, I just wanted to pretend like I hadn't had these issues and actually live a more normal life. The life every other 20 something year old gets to live.

The problem is, I have a chronic illness. There is no escaping it. It is something I will live with for the rest of my life. While I cannot change what I am going through, I can talk about what is going on with me. Sometimes all people need to know is that they are not alone in what they are facing. Sometimes, when going through anything (not just chronic illness), what makes things better is to know someone else out there gets it. So, here I am. Sharing my personal feelings, issues and anger about living with a chronic illness so that maybe I can help one person.

Each post I write, I will end with a silly saying or meme that is about chronic illness (sometimes specifically POTS related) that helps me get through the day...who knows, maybe it will help you get through the day too. Sometimes, all you need is a laugh, and while some people will not find some of these funny...those who suffer from chronic illness definitely will.

Here is today's: