If you had told me a couple of years ago that I wouldn't be able to participate in every activity with my friends and family, I would have said you're crazy. Today, this is my reality. POTS has affected every aspect of my life since 2016. There are a lot of people that do not quite understand. This means resting in between activities or chores, this means having to choose between going out to dinner with friends or doing the laundry, this means having to lay down after taking a shower or even having to sit in the shower, the list is endless.
I have learned over the past 3 years, as I am able to tolerate a little bit more these days, that I am the only one who knows my body and what it needs. I have come up with 5 lessons I have learned that I want to share with you all. I work on these lessons daily. I hope that you will find some of these tools helpful as you go through your own struggles.
First, if you have plans with other people, it is 100% ok to be honest about your limitations. This is one of the hardest things that I am still trying to work on. I know how difficult it is to want so badly to participate in everything, but sometimes that is just not possible, and this is our reality. You can't control what others reactions are going to be, ultimately you have to do what is best for you. Be open and honest with people about your expectations and what you can and cannot do. This helps you and others to know that you really want to do everything you can to participate, but there is a chance it may not happen. This will also help you define what you are able to do and how that person can help you achieve it. This takes time and I am still learning to let people in and open up to those I trust. Start by surrounding yourself with those closest to you, who you can trust and be most comfortable with.
Second, take control of the situation. There are not many things that we can control with chronic illness. If you aren't able to follow through with the plan, but feel as though you can do something on a smaller scale, have a backup plan so that your brain remembers a success. You may not be able to always do the big things and this can take a toll on our psyche. Having a backup plan allows you to still feel like you are accomplishing a goal, no matter the size. It doesn't matter what the backup plan is, it can be as little as taking a walk around the block or inviting that friend over to order in instead of going out to dinner.
Third, rest. When you have done something that requires multiple spoons of energy, take the time to rest. There are always going to be things that we cannot control or foresee, but living with a chronic illness I have learned that I need rest BEFORE and AFTER an event or activity. If I know that i'm going to do something that is going to be challenging for me, I will rest before and after an activity or an event and load up on lots of salt and fluids to help my body accommodate and recover.
Fourth, setting boundaries with kindness. This is one of the hardest things to do, especially with loved ones. It is challenging not to be rude or to snap at someone when they are trying to tell you what to do, what they think you need, or the latest thing that could cure you. What a lot of people don't understand is that chronic illness is essentially forever. You can have ups and downs and go through better periods and worse periods, victories and defeats. There is not one thing that is going to help and only you know what your body needs because you have done the most research and have invested in coming up with a plan with your doctors and therapists for what works best for you. When you approach someone, come from a place of kindness and let that person know how much you appreciate and love them, it will be easier to communicate your needs and boundaries. Figure out what it is that is not serving you and what it's disturbing inside of you. Take the time to acknowledge your needs. Therefore, you can translate those feelings to others and decide how they can be of help. Take the time to educate them so that they don't completely feel like they are in the dark and know that you are doing everything you can to get to a better place.
Five, find a professional that you can talk to. The emotional side of living with a chronic illness is just as debilitating as the physical part. There is a process when you go through something like this. I have had to grieve tremendously for the person I used to be and the life I once knew before I could even begin to learn any of these things and accept that things were going to be different. Your relationships change with your friends, family, and also with yourself. Nothing seems to makes sense. I had and still have to this day so many different feelings and so many questions and I needed someone who was not part of my daily life to help me make sense of it all. Ask for help with you need it. There is no shame in having a therapist when you are struggling.
These lessons are things that through many different experiences I have and continue to learn along the way. I am by no means an expert or have any of these things perfected, it's a work in progress. I am trying to be patient with myself and I know others are trying to be patient with me as well as I figure out how to navigate this new life.