Coping with POTS

Coping with POTS

I was recently provided with a very well-written article about POTS (postural orthostatic tachycardia syndrome) by a fellow POTSie who sees the same specialist I do. The article was written by the specialist, his nurse, and some of his patients who are in the healthcare field. Please feel free to share the article with friends and family members! 😊

While I enjoyed all aspects of the article, the part that surprised me the most, mainly due to the fact that it was even included, was the section entitled “How Do I Cope Emotionally With POTS?” This section discusses emotions that may be felt by an individual with POTS (or any chronic illness for that matter) and tips about how to cope with these feelings. As an exercise, I stayed up very late last night writing out how I’ve experienced these emotions with relation to my POTS diagnosis and course of illness. It was a very nice catharsis!

All definitions below are from the document cited above.

Frustration

Distress and annoyance, especially in the inability to change or achieve something.

This is a huge one for me. Overall, I can’t change my health circumstances. I can do nothing about the fact that I was diagnosed with celiac disease five years ago and that it probably contributed in a big way to me developing POTS, according to my specialist. I can’t change the fact that I developed endometriosis, or that I may have hypermobile EDS (or at the very least Hypermobility Spectrum Disorder), or that I developed a pituitary tumor, all of which have likely contributed to having POTS. I regularly experience distress and annoyance because of my inability to change these things.

It was also not lost on me the way my specialist carefully worded his optimism when I saw him last week for the first time. He told me that his nurse had asked about me when he came out to get my paperwork, “Do you think she’s going to be ok?” He then told me, “I’m really hopeful about you. I think you’re going to do really well.” But he was very careful not to say the words “better” or “cure” or “fixed.” Because he knows that those things aren’t likely, or maybe not even possible, to achieve. I’ll always have POTS.

Anger

Feeling of displeasure and annoyance.

There are certainly a few times that I have been angry about all these circumstances. In my journal on October 5, 2016, I wrote, “Cold intolerance and craving salty foods…maybe a little dizziness and lightheadedness, but far less than what I was having before surgery…I just wish I knew what was causing me to feel like this.” Later that day, I described these “episodes” I sometimes have even to this day: “And then when I was still in bed, I was awake and then would suddenly have these feelings like I was about to pass out; not fall asleep, but pass out. Things started spinning and my vision was tunneling and I think my hearing was doing something weird. It would only stop if I rolled over from my back onto my side.” At the same time, I was also experiencing a severe fatigue unlike anything I’ve ever experienced.

But when I saw my neurosurgeon for follow-up the next day and explained all these things, he denied that the surgery had anything to do with the fatigue or any of my other issues. When I look back on this, I am stunned. I remembered the fatigue, but had forgotten the other issues, which sound exactly like POTS. My specialist said the other day that these symptoms were glaring signs that POTS was happening. But back then, I just thought I was going crazy because my doctors kept pushing me away, telling me I was normal. Turns out there was nothing even remotely normal about what I was experiencing.

Grief

Deep sorrow over a loss.

This. This is a big one. I’ve heard it said that when it comes to chronic illnesses, you need to let yourself grieve for the parts of your life you’ve lost that you will likely never get back. What have I lost?

  • Over a year of work.
  • I’ll soon be replaced at work (then no salary).
  • A feeling of usefulness.
  • The friendships of many who have seemingly washed their hands of me.
  • The ability to ever truly be well again.

These conditions are all linked together like a chain-linked fence and none of them are truly curable. My endometriosis may never come back, nor the brain tumor. But the damage from their presence has already been done. That’s why the specialist never said “better” or “cure.” He knows this will never go away because of my likely causes, but at least he thinks we can possibly make my day to day life a bit more liveable.

Disappointment

Sadness and displeasure over failure or lack of fulfillment of one’s hopes, expectations, and goals.

IMG_2182Another big one. (At least these emotions are expected and appropriate in this patient population…)

  • I always thought I was going to be a career pharmacist at my practice. (Ironically, I became officially licensed seven years ago yesterday).
  • I’m nearly 32 years old and I’m still without children.
  • I thought that once all those surgeries last year were over that I’d be completely fixed and be able to return to a normal life. I’ve only now come to find out that the tumor at least was a sort of harbinger of doom.

Guilt and Shame

 Painful feeling of humiliation or distress from perceiving you have done something wrong.

Oh, yes. I wrote that one blog post about a month ago about whether or not the POTS was my fault because I decided to have the surgeries that may have and likely did contribute to the POTS. Looking back, I really don’t think I had much of a choice and I made the right decision in having the surgeries, not having any idea of how my body would react to the surgery (not the anesthesia, as the specialist confirmed.)

The humiliation is awful, though. I feel humiliated every time I set foot on main campus, for fear of seeing someone I know. Although if I had to pick someone to see, it would be someone who knows me but who doesn’t really know what’s going on with me. No time to explain then.

Embarrassment

Feeling of shame and awkwardness.

I know what that’s about, all right. Pretty much the same as above. I would be really embarrassed to be seen in my wheelchair (last week was bad enough), but especially by my co-workers. Due to a lack of understanding, I’m sure at least some of them would think I’m overreacting, which would make me feel even more ashamed and awkward. It’s a vicious cycle.

Hope

Feeling of an expectation and desire for a positive thing to happen.

I have a lot of desire for positive things to happen, especially after my appointment with the specialist. I completely trust him to get to the bottom of this and I can’t wait until he does!

Trust

Belief in the reliability, truth, accuracy, and ability of something, concept or a person.

I trust the Lord above all others. He led me to this specialist. He gave me strength to endure seven months (ten if you include symptom onset) of feeling awful the vast majority of the time while waiting for the appointment.

I trust that the Lord will guide my specialist to decide on the best tests to get to the bottom of what is causing my POTS, so we can make sure that whatever else is going on is adequately treated.

I trust that the Lord’s will be done.

I trust that my circumstances will glorify the Lord.


How about you? Have you ever experienced any of these emotions because of your chronic illness?

💛ribbonrx

 

 

10 thoughts on “Coping with POTS

  1. While I don’t have POTs, I do have many other chronic illnesses as well. And I can relate to so many points on this list, which I think covers the emotional aspect of living with pain articulately!

    1. Absolutely Sheryl! These can really apply to anyone with a chronic illness or chronic pain. I love that these were included in the article about disease management; so often it seems we’re told to suppress our emotions unless you’re with a counselor, but this recognizes that we have permission to feel them and that it’s helpful to do so!

  2. I found this post really interesting. I’m currently undergoing investigations for endometriosis and I identify with the emotions you’ve mentioned above. Particularly the frustration – I used to be such a busy person and now I sometimes get annoyed when I haven’t got the energy to do the things I used to. I’m glad you mentioned hope too, we’ve all got to keep looking forward 🙂

    1. Thank you, I’m glad you found this post helpful to you! I remember back in 2014 when my endometriosis was really out of control. I had no idea what was going on, or what the proper treatment should be. I learned a lot that year, and it was by placing my hope in the hands of an expert excision specialist 700 miles away that I was able to get my life back. Until everything else happened, that is! But my endo is under control! 🙂Hope is so important when chronic illnesses are involved, especially since many doctors really don’t know what to do with us.

  3. I think we all have had to go through the stages of grief at one point or another. Even when that grief goes away, sometimes another thing triggers it and we’re back to square one… It’s definitely a process. 💙

    1. You’re welcome! It’s interesting how these emotions are one thing that I think everyone with a chronic illness has in common. Our illnesses may affect us in different ways physically, but the emotions are for the most part the same!

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