Receiving any diagnosis of a chronic condition can be life changing. It is a daunting thing to be told you have something there is no cure for. My life was forever changed after I was diagnosed with POTS and I have definitely learned a lot over this past year. Here are the top 10 lessons I have learned my 1st year with POTS.
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1. The Number 1 Lesson I Have Learned: You have to be Persistent
Persistence has become my new life motto. Being diagnosed with any chronic condition means you now have to face a daily battle that you don’t have a break from. This means each day you are faced with a choice; to either give up or put up a fight. I hope that you choose to fight! Persistence is KEY to improving your quality of life. Don’t give up and you will see improvement!
2. You Will Have Good Days and Bad Days
I honestly feel this is THE most frustrating thing about living with POTS. You can be feeling great and then out of nowhere get sidelined by debilitating symptoms and triggers. The most frustrating part is you have no idea if or when this will happen. Learning what your triggers are will definitely help you have more good days.
Check out this post to learn more about POTS Triggers and How To Avoid Them.
One of the easiest ways you can help limit the bad days is to increase your water and salt intake. POTS symptoms are most likely to occur when your blood flow and blood volume levels are off. Increasing your hydration and salt intake will help improve your blood flow and levels! My favorite way to do this is by drinking electrolyte packets from LMNT.
Shop LMNT Electrolyte Packets Here
3. Lesson Number 3: There is No Cure
I know this may be pretty obvious since POTS is a chronic condition, but it is still a difficult truth that you have to accept. As mentioned in the intro, it is a daunting thing to be told you have something there is no cure for. Having no cure means this is something that won’t go away or get better. There are treatment and therapy plans, like the Levine Protocol, that will help improve your quality of life, but POTS is something you will have to deal with for the rest of your life.
4. You Will Have to Make Sacrifices and Lifestyle Changes
Sadly, POTS will drastically reduce your tolerance level to physical activity. This is due to the rapid spikes in your heart rate. Unfortunately this means you will have to make some changes to your life. There have been SO many activities I have had to give up that I previously enjoyed doing.
For example, I have gone from a pretty active person to a sit and watch person. This has been most frustrating in how much it has limited my physical activity with my family. It breaks my heart to not be able to physically do the things I once enjoyed doing with my kids. I hope and pray my tolerance levels will increase so I can get back to doing some of the things we love!
However, I have learned some key things that help. Check out these 5 Simple Tasks That Will Change Your life! Hopefully these will help you find ways to improve each day!
5. I Have Learned That Being Fatigued is Completely Different than Being Tired
I have NEVER felt physical exhaustion like this. Trust me, I have three kids and have had to work multiple jobs my entire marriage to put food on the table for my family. However, being tired doesn’t even come close to the level of exhaustion you will feel from the fatigue that POTS can cause.
My advice, learn to listen to your body and rest when you need to rest. My family now knows that there are times when my body just shuts down and I pass out wherever I am…literally!
6. POTS can be Triggered by COVID and the COVID Vaccine
The medical community is still trying to wrap it’s head around why this happens. However, the good news is the increase of POTS cases post COVID has forced the medical community to do further studies on this little understood syndrome. Personally, my POTS was triggered about a month after I had a mild case of COVID. So, I have learned this the hard way!
Check out this article for more information.
To make things even more interesting, POTS symptoms are also more severe if it was triggered by COVID. Once again, the medical community is uncertain why this happens. However, studies like this one are being done to try and find out why.
7. There is NOTHING You Can do to Prevent Getting POTS
I can’t tell you how many conversations I have had about people’s ideas on what I could have or should have done to prevent getting POTS. I know people have said these things thinking it would be helpful, but instead it just causes frustration. The harsh reality is if POTS is in you, then it’s only a matter of time before it is triggered. Sadly, there is absolutely nothing you can do to prevent this from happening.
This can be frustrating, but knowing it was not my fault has at least brought some sense of freedom from thinking I could have done something to prevent this from happening. It has also helped stop those not so fun conversations mentioned above!
8. I Have Learned You Have to be Your Own Advocate
Unfortunately, the medical community does not know a lot about POTS. One of the hardest things to navigate through is finding a doctor or specialist who actually knows how to diagnose and treat POTS. There is also a lack of studies and knowledge on POTS itself so treatment is kind of hit or miss. Sadly, this means that POTS is often misdiagnosed for other conditions which can have a negative result on your journey to recovery. What I have learned is you have to be your own advocate and be persistent in listening to your body. Seek out the right doctor or specialist who understands what POTS and will help develop a personal plan for treatment. They are out there! You just have to look!
Try this site to find a specialist near you!
Also, research, research, research! You may have to dig deep to find something helpful, but never stop researching POTS and the symptoms it has caused in your life. If you are reading this post, that means you’re already doing this! Great job! Feel free to read others to find out more helpful information!
Also, it would be great if you could share my site on your social media pages so others can find help too!
9. Dealing With POTS is a 24/7 Battle
Again, persistence is key. Unfortunately, POTS does not take a vacation which means you can’t really take one either. You will have to stay regimented and dedicated to your treatment plan and NEVER take a break from that. Since POTS dramatically reduces your tolerance levels to physical activities, you have to work a billion times harder to maintain and improve those levels.
You also have to make lifestyle and dietary changes to avoid the things that trigger your symptoms. In fact, you may even have to move or avoid certain climates and conditions. POTS is known to be triggered by changes in elevation, heat, and humidity. This means that you can trigger your symptoms in an environment with any of those conditions.
Long story short, you will have to work hard to improve your quality of life when you have POTS. Also, to make things even worse, POTS does not have a cure which means you will have to fight this 24/7 battle for the rest of your life.
Check out these blog posts for POTS Savers that help!
10. You Will Need to Learn How to Ask For and Receive Help
I have made a career out of helping others and have always struggled to let others help me. So, this lesson was a difficult one to grasp. However, it is so important to learn how to let others help you! This has been a very humbling lesson to learn as I have carried the weight of financially providing for my family and trying to show strength to my wife and kids.
POTS has literally taken all of that away. I now am without a job and have to work SO hard just to do simple physical tasks around the house. I don’t know how I could do this without the love and support of my friends and family! Let others help you! You will need it and they will find joy in being able to help!
Also, dealing with a chronic illness can have a negative affect on your mental health. Be sure to read this post on How Mental Health Can Make or Break POTS Symptoms for ways to help!
Closing Thoughts: 10 Lessons I have Learned My 1st Year With POTS
Every single one of the 10 Lessons I have Learned My 1st Year With POTS has contributed to my improvement and my exhaustion. Y’all, I am BEYOND exhausted from fighting this daily battle. However, I want to beat this! The good news is most people experience major improvement and can get back to a somewhat normal level of life IF they stick with their treatment plan.
These 10 Lessons I have learned my 1st year with POTS has led to finding new ways to enjoy life with my friends and family instead of dwelling in the negatives of what I can’t do. Although my life has forever changed, my desire is to persevere and continue to improve! This is a hard decision to stay committed to because it is way easier to accept defeat. It takes SO much energy, both physically and mentally, to fight. However that is what is needed and you can do this!!
Living with POTS will always bring new hurdles to overcome but it is possible to beat it! Although this past year has been filled with many obstacles, it has also had some victories! I have come SO far from where I was when My Unexpected Battle With POTS began. I know these 10 Lessons can be tough to hear, but I do want to end with a positive note in saying you can find ways to improve your quality of life! Stick with the treatment plan that works for you and be sure to surround yourself with others who will help encourage you along the way.
Feel free to share what you have learned on your journey to recovery in the comments below!