I have Pulmonary Hypertension. It is a rare, invisible disease. Most people who read my blog are fellow Patients and PHriends. To others I look like a completely healthy individual. I hear other PH’ers mention the struggle of dealing with an invisible disease quite frequently. In my posts I prefer to focus on positives because in our world we can be bombarded with so many negatives, but lately I have been coming across this issue in my personal life.
There are four different functional classes for Pulmonary Hypertension Patients. I am in class 1 meaning that “Ordinary physical activity does not cause fatigue, chest pain, or fainting.” I am able to work, clean my house, go on walks etc. Doing ordinary everyday tasks causes me almost no problems. I have even been able to work out, go hiking, biking, swimming, etc. As you can imagine, doing more strenuous activities does take a lot out of me. I feel much more drained after performing these types of activities, and I have a difficult time “keeping up.” I am blessed that my heart has been able to cope well on medications, and keep up with the extra stress that is being placed on it by the lungs, so that I can still enjoy having this kind of active lifestyle.
Unfortunately, I never feel “normal.” I am always tired, and I have been tired for as long as I can remember! My loved ones know that I am sick, and they are so proud of me for the things that I am able to do. Unfortunately, because I can do so much, they often forget that I really am sick. They forget that I struggle daily just to breathe. They forget that at any time my PH could turn for the worse and I may not be able to walk up the stairs, let alone work. I pray that I will live to be in my 80′s, and that during that time there will be a cure. Sadly, there are always the what-ifs. What if in 5 years I have to be admitted to the hospital, what if I am put on oxygen, what if I can no longer even keep up with the housekeeping?
Many of my family members cannot understand that I am not perfectly healthy, and that I sometimes have to do things differently than a healthy person. My family members, employees, and friends often put undue stress on me emotionally. Stress is bad for everyone, and for PH’ers being put under undue stress makes an already fragile heart and body even more weak.
Here are the ways that I try to combat these issues. Even though I have been very frustrated and “pissed off” lately about some of these, I want to try to offer solutions and not just complain about problems! Here we go:
1. Live life to the fullest: Any of us could die in a car wreck tomorrow. Would you be happy with your life? My husband has said that all I want in life is to be happy, and he is definitely on the right track with that statement. I am a fairly happy and content person. I may not be where I want to be in life as far as my goals and dreams, but during the day to day scheme of things it is not hard for me to be happy, or find gratitude, and enjoy the present moment I am in. Life is to short not to enjoy, so we should all make some changes to be more aligned with the things we value and the things we would like to do and accomplish.
If you are reading this and you are unhappy, what is one thing that you could change to put yourself on the right path? It doesn’t have to be a crazy change, it can be something small, as long as it gets you on the right track. For example: for someone who hates their job, a big change would be quitting. Maybe instead - the change can be searching for a new position, or even brainstorming ways that they could make their current job more bearable during that job search. Simple things add up and will propel people forward!
2. Bring people who are important to you along to your doctors appointments. This makes it more real. My doctor often sounds kind of scary. He is always positive about the future and how I am doing, yet he always has a grave and cautious vibe. Invite them to special PH events and support group meetings. Here they can meet other people like you and hear their stories. Often I think it is hard for people to accept that something like PH is happening to someone they care about, and so they try to pretend it is not. If it is happening to someone else, it makes it easier to understand and accept. For me, many in my support group are on oxygen. It is a shocker when I bring people with me to meetings and they see that this is actually a real disease!
3. Let it go. This is the most difficult thing to do. It really has taken A LOT of practice. I still sometimes find myself fixating on problems or situations out of my control. I often hear from other online support group members that their friends are upset with them or don’t like them anymore because they (the friend) doesn’t understand that the person is sick. You are sick, and if someone doesn’t like you because of it, then they are not worth your energy! This is so sad, and so hard, but don’t fixate on it. As we get older we grow apart from our friends. For many PH’ers it can get lonely because we often do not have the energy to attend bbq’s, birthdays, and other various activities. If our friends don’t understand, they are likely not educated about our real situation, or they are so focused on themselves that they cannot understand how you can’t be there for them at their “oh so important” birthday party. Give to the people you care about in the ways that you can! Be there for them as much as you can, and when you can’t they should understand, if they don't, let it go. Whatever you do, do not dwell on it! That will just bring you back to the stress.
LOVE YOUR LIFE EVEN WHILE ADJUSTING TO YOUR NEW NORMAL! RANT OVER!
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