LindsayManaging illness on a daily basis can be a challenge in and of itself. Lately I’ve hit a groove where, as long as I take the things I should and do the things I should, I am fully functional. I still have symptoms constantly, but they don’t interfere with what I do on a daily basis.
Of course, it bears mentioning that I don’t stand up for more than 10 minutes at a time, attend concerts, climb a bunch of stairs, travel internationally, run or do awesome air kicks on a daily basis.
But sometimes, even when you think you have everything under control, life gets in the way.
I’ve spent the last two weeks in Arizona to 1) attend a funeral for a friend, and 2) take care of my dad while he underwent spinal surgery. It was a difficult couple of weeks.
As I’m sure I’ve explained many times, epinephrine (adrenaline) is produced in response to emotional triggers like stress or fear. People with postural orthostatic tachycardia syndrome (POTS) often produce more epinephrine and norepinephrine than the general population, and adrenaline and stress can trigger POTS symptoms. It’s a difficult cycle where my POTS symptoms activate an adrenaline response, and the adrenaline increases my POTS symptoms, often set off by an emotional event.
Naturally, funerals are emotional events – especially when the funeral is for a 30-something mother to a wonderful son. The last email I received from my friend was a year ago. It was a very touching email, even when she was alive. And now that she’s gone, it reminds me of all those things we never say but should. While the funeral was a really beautiful tribute to my friend, it was hard. As her son got up to speak about what a wonderful mother she was, my heart sank. I struggled to keep my symptoms under control, but felt the surge of adrenaline rush through my body. Fortunately I was able to manage the symptoms but, if I’m being honest, a large part of that was due to focusing on something else every few seconds..my hands, the floor, the hairstyle of the person seated in front of me. Anything that didn’t involve hearing about my friend lying in the casket. I feel like a jerk for saying that.
While it’s never easy saying goodbye, I’m very pleased I could be there and pay tribute to the wonderful person she was. I know I would regret it if I had not made the trip.
The rest of my trip was spent helping my dad prior to and after his surgery. My dad has spinal stenosis and had lumbar laminectomy surgery on 5 vertebrae. As my dad lives alone, my sister and I wanted to help out in any way we could. However, I was afraid I wouldn’t be much help. I feared people who struggle to take care of themselves may not make the best caregivers.
The day of the surgery and the few days after were spent at the hospital visiting my dad, anywhere from 8-14 hours per day. After he was released, we helped get things organized around the house so everything was “surgery-proofed”. We did some shopping, cooking, cleaning, and whatever else we could.
Heat is not a friend to POTS, and Arizona is certainly known for its heat. It hit over 100 F while I was there. I did what I could to stay hydrated, but no matter how much I drank, I still felt dehydrated, lightheaded and tingly. I struggled to stay vertical a lot of the time. I’m not going to lie – it was difficult for me. But I’m glad I went.
Two weeks after I arrived, my sister and I made our way home, leaving Arizona at about 9:00 a.m., and I finally arrived home at 7:30 p.m. It was a very long day.
A day after returning, I began to sneeze constantly – like hundreds of times. I couldn’t go more than a couple minutes without sneezing, all day long. I think my immune system has been weakened. I’m exceptionally fatigued and am back to taking long naps every day. The amount of time I can stay standing has been greatly reduced, and the leg pain has increased. In short, I overdid it and am paying for it now.
Learning how to manage my Dysautonomia/POTS while dealing with what life brings is a constant challenge. I’m disappointed I’m not better at it, but every challenge is a chance to improve. I’m glad I was there for my dad.
In my next post I will discuss what I learned about being a caregiver while managing my own illness. I know many of you have experience with this – I would love to hear about how you manage it!!
“When we least expect it, life sets us a challenge to test our courage and willingness to change; at such a moment, there is no point in pretending that nothing has happened or in saying that we are not yet ready. The challenge will not wait.”
― Paulo Coelho
Smell ya later.
– Linds
Thank you for a very real article. I sound like a baby whiner right now but I just spend a horrible Mother’s Day….all thanks to my &*^^&*(& POTS (and Mast Cell whatever the &*^& I have)…wonderful morning, have been very stable so we decided to go to “Captain America.” BAAAAD DECISION. The stress of the movie set me into a collapse–my body temperature when we got home actually crashed to 94.2 degrees (daughter’s w/ same thermometer 99) and i’ve been hit with massive masssive fatigue. How can GOING TO A FRIGGING MOVIE be too much??? So Mother’s Day cards and gifts wait on the kitchen counter for another day, and the beautiful dinner my husband made is in tupperware. I am so sick of being sick I want to cry and scream and swear but know that will only make me worse. Anyway, I totally GET what you mean about STRESS sending us into a tailspin. I am VERY impressed you were able to get through both a dear friend’s funeral AND helping your Dad. Very impressive indeed. Wish I could say the same about my Mother’s Day. Whinefest is now officially over. grrrrrrrrrr. Tammi in Oregon who is still really pissed off but proud of you for doing so great. Yay you!
I’m so sorry to hear you didn’t have a better mother’s day!! Movies can be difficult for me as well. All of the loud sounds, flashing lights, and vibrations can make me very symptomatic. I rarely go to the theater anymore, which is very frustrating because all I have to do is sit there!! It seems like it should be so easy!!
I hope you’re having a better day today and will be able to celebrate mother’s day soon!
Thanks for being so kind…especially taking the time to respond after all you’ve been through the past few weeks. If you have had any specific endocrine testing that has helped solve your puzzle I’d love to know–WHY is stress a trigger? Is it a Hypothalamus disorder, pituitary, adrenaline, epinephrine?? SOMETHING is being triggered–but by what??? No Mother’s Day again today; another rough one. Thanks also for this blog–gives us hope and encouragement we are not alone.
So sorry to hear of the passing of your friend – tragic to lose someone at such a young age 🙁
But glad you managed to make the trip to say goodbye, and to help care for your Dad. Adrenaline gets me through most situations, but then I always crash for a while afterwards – rest up x
thank you very much. it was a difficult trip, but i know i would have regretted it had i not gone.
Dear Lindsay,
I want to say thank you so much for your blog. You have been through so incredibly much, but your sense of humor is so welcome–brings a smile to my face, in spite of being so ill (both you and me). Thank you so much! You are a total breath of fresh air!
I’ve been ill for three years. We don’t know what it is yet, but doctors are finally listening. I may have Dysautonomia, maybe POTS, maybe Mast Cell Disorder. I definitely have problems with my histamine, having just had a histamine reaction awhile ago. I’ve been to the ER three times for this, and I wasn’t going to go again. I monitored to make sure I didn’t have swelling (did have skin rush and massive tingling, rash, tachycardia, etc.), but kept my Epi-Pen handy just in case. I just can’t seem to do anything anymore without getting some kind of reaction–my immune system seems to have fallen completely apart. Also have massive migraines, pretty much on a daily basis. I’m on the Low Histamine Diet, but still I’m reacting to pretty much every food. I can only eat about three things, and I tried something new from the list that should have been ok–oops! I react to emotions, too, and heat and cold and . . . and . . . and. . .
But, I want you to know that you are very much appreciated. I see others on here who are going through massive health challenges as well, and I want to thank you all. Before I was sick, I couldn’t have been able to imagine that people are living with these challenges. Most of us were once-active people with brains and bodies that functioned. I can’t even pick my son up from school some days. What happened?
I’m so sorry to hear about your friend. Makes me so sad to think of her with her son, as I also have one son and I’m afraid I may not make it through this illness. I know what you mean about focusing on other things to control your emotions and thus you symptoms. I have to do that all the time. I was also at a funeral awhile ago and it was rough. I had to do the same thing, but then I noticed that a beautiful butterfly was flittering back and forth around the speakers and through the guests and I realized that this butterfly was the spirit of the man who had passed away. It was his way of saying that he was so glad to see that everyone was there and that he was all right and light as a feather. It was such a wonderful sight. I could watch the butterfly and instead of being sad, be glad that his spirit lives on. Did you notice anything like that at the memorial service you went to?
Well, gotta go and take another Benadryl. I’m sure this histamine will be back. I usually don’t get over this for a week–sometimes two, but I’m never well like I used to be. However, I do have hope that once we can actually figure out what I really have, I might be able to get some help. All my best to everyone dealing with these chronic illnesses. Thank you, again, Lindsey for your wonderful blogs. Just read the one about you being glad they didn’t give you a Vasectomy! Your sense of humor is fantabulous!
Truly, Elisabeth
thank you for sharing what you are going through… it seems we enjoy a lot of the same challenges. i use the word “enjoy” slightly sarcastic. 🙂
okay… but honestly i do enjoy (in the true definition) your blog, and thank you so much for supporting mine! 🙂
I hope you find what works best for you in your journey to find the right meds. life is so much better when we feel better more hours vs less.
I am sorry for your loss and I hope your dad recovers well, he sounds like a strong man.
have a happy week!