The Uncertainty of Chronic Illness

Well, the amazing upswing I was experiencing with my symptoms did not continue.  After that last post, everything started to come back again.  I think I am yo-yoing here and that eventually my symptoms may even out.  At this point, I don’t think I know what my new normal will be with going off of meds.  I think they are still getting out of my system and that my body is still recalibrating.

I’m confused because I did have some really great days where I was able to increase my activity levels significantly.  If my body is capable of this, surely there must be some way to make this the norm.  And, of course, even with all my attempts to not overdue things, I may have still overdone it and may have caused a flare.  It seems I need a crystal ball and psychic abilities to make sense of it all.

So, let’s see, we last checked in when I was having a migraine after a doctor’s appointment.  That was for an ultrasound of my thyroid.  I wasn’t expecting an ultrasound, but when they called to set the appointment, I just assumed it was part of my partial thyroidectomy follow up.  When I came in and the tech asked me about my scar and if I’d had surgery, I knew something was up.  It seems they’re not big on updating my chart.  I’m pretty sure that my ultrasound was to follow up on monitoring the thyroid nodule I had surgically removed (along with half my thyroid) and that nobody had updated my chart with the surgery.  I’m fine with an extra scan, it doesn’t hurt me.  However, it does hurt my trust in my medical care team.  I have no second guessing about my choice to leave them. I’m looking forward to new insurance and doctors in January.

The next day, we tested my replacement power wheelchair at Disneyland.  My husband and I met up with his folks and brother.  The chair was working out great.  I felt like a faker because I had been doing so much walking and here I was back in my wheelchair.  I needed to use the restroom at one point and the facilitates were very crowded.  I decided to have my husband wait outside with my wheelchair and I went in the line sitting upon my cane stool.   I quickly realized I was not being a faker.  I could hardly get through that little line while scooting around on a stool.   I was so relieved to get out of there and get back into my wheelchair.  We only stayed at Disneyland for a couple of hours because I knew we had a big weekend ahead.

I tried to rest until Friday, which turned out to be a big day.  I do recognize that I tried to do too much.  Starting the day with a shower was my first mistake. We took our sphynx cat, Kira, back to the vet for a follow up about some wheezing and skin issues.  Now our kitty is on meds.  My husband’s holiday party was that night and I had totally forgotten about it.  I got my nails redone at a shop next to our veterinarian.  We then went home to get ready for the party.  We also packed because we got a room at the hotel the party was located at.  This was all taking place at the same hotel my sister was married at, so I knew we were in for a special night at a beautiful venue.  We brought my wheelchair, but I was determined not to use it.  I brought a pretty cane and my stool/cane.  I did have to use the stool/cane, though, because of frequently needing to sit without much warning.  It did not look great with my formal dress, but confidence is everything.  I hobble along with my head held high!

It was furiously windy when we got there.  When we checked in, they first gave us a room some walk away from the lobby and party.  I explained that it was too far for me, but could use my wheelchair if need be.  They switched our room to something closer, and it turned out to be a huge upgrade.  It did allow me to go with my cane/stool.  The party was huge and a lot was going on.  My husband helped me navigate and was quick to help me go sit whenever we got stopped for introductions.  I love how he looks out for me.  I made it through dinner and then totally started to fall apart.  I felt it coming on and asked him to take me back to our room.  It was so hard getting there and I don’t know how I did it.  In the hotel room, I had a major spell.  It was like one I had not too long ago after a day at the park and driving the canyons.  Like with that time, I was having sudden shifts in cognition.  I would be aware, then slowly start to fade out, then suddenly burst back in.  When I burst back in, I wouldn’t know where I was and would quickly need to assess my surroundings, but then just as I realized what was happening, I would fade out again and the cycle would continue.  I was very distressed because the room was not familiar to me and figuring out where I was over and over again was unsettling.  I wanted to go home.  We were in this beautiful hotel room in a resort overlooking the ocean, and I just wanted to be home with my cat.  My husband is such a sweetheart.  He wasn’t worried about the cost of the room or any of that.  He took me home.  He had to push me out in the wheelchair and we drove home.  I remember attempting to take the stairs up into our condo.  I was crawling and having a terrible time.  I broke down half way and just cried. Then he helped me crawl the rest of the way by supporting my weight from behind.  He got me back to my safe space and my kitty crawled into my lap.  I was then finally able to be calm despite these mini syncope cycles or whatever they are.

The next day, my husband and I had big plans to go to a symposium on the connection between POTS, EDS, and MCAS.  Some big time research doctors would be speaking and I had been looking forward to this for sometime.  From the beginning of the day, I knew this was going to be hard to do.  I had one speaker in particular I really wanted to see, Dr. Grubb.  This day started as a wheelchair day.  I usually feel extra comfortable with my mobility aids and acting symptomatic when at such events.  Still, I was not really in good enough shape to be out of the house.  The whole thing is a bit of a blur.  I had some of my presyncope episodes complete with visible myoclonic jerks and had a terrible time following the lectures.  There were so many sounds and things going on.  I did have a couple take aways.  Dr. Grubb mentioned that Hyper-POTS should be it’s own condition (separate from POTS) and he emphasized how different it is. He also mentioned a small crossover group who has Neurocardiogenic Syncope (aka Vasovagal Syncope) and POTS.  I was diagnosed with Vasovagal Syncope before Hyper-POTS and my main health complaint is definitely syncope and presyncope spells.  I just feel more and more like I am not even fitting well with these already poorly understood conditions.  I am more confused about my diagnoses than ever.

I wasn’t able to make it through the whole event and again, my husband had to push me out in my wheelchair because I was not feeling well enough to operate it.  When we got home, he even pushed me around back with the wheelchair so I didn’t have to face the dreaded stairs.  Of course, that is a whole other production involving streets, a hill, and a long walkway that doubles as a rain gutter.  I missed the second day of the event, too.  When I woke in the morning to get ready, I went to the restroom and fell to the floor immediately after.  I couldn’t even get back up for a while.  I guess I woke up already totally done for the day.  So, I just rested the whole day.  I really think I needed that.  I’m going to just rest again today.  I’ve also started taking Claritin in case allergies from the winds are a factor.

So, I’m really into having a positive attitude and also into allowing myself to feel all of my emotions.  At the moment, I’m allowing myself to feel before working on that positive attitude.  I am just crushed that the decrease in symptoms was so temporary.  While I enjoyed being able to do more things for a short while, I allowed it to feel like a new normal.  So, now that it’s gone, I am having a hard time going back to accepting my limitations and use of mobility aids.  I fully realize that I may get more good days like that again or that I may not.  It is a reminder of how uncertain things are and that as much as I like to plan, I’m never really going to know what my health will be like in the future.  It feels like having a few good days unravelled much of the delicate work I had done to move towards acceptance of my conditions and embracing adaptations.  I will need to revisit that again and work on continually creating a sense of inner peace balanced with working towards finding my best health balance.  Part of that may look like doing less activity should I have those good days again to see if that helps to keep them coming.  I know I’ll be okay and find ways make things work out, but I can’t get the memories of those recent good days from my mind.  I can’t deny how badly I wish to walk on my own, to be able to walk out into nature or to join my mom and sister on one of their many shopping trips.  Now that I have had a recent taste of such freedoms, I want them even more.  We’ll see what a few days of rest does.


2 thoughts on “The Uncertainty of Chronic Illness

  1. That uncertainty is terrifying, isn’t it? And it’s especially hard to come back down after a few good days. It’s like you’ve had a taste of freedom, then back in the cage (for me at least). I’ve suddenly lost the ability to go for a walk in nature or go for shopping trips recently, and it’s a hard transition.


    1. Yes, the cage metaphor is quite apt. Thank you for understanding, but I’m sorry that you do, too. The quick transitions with losses of ability are very challenging to adapt to, but we humans are great at adapting. I hope you find your way during your transition and wish you the best. ❤


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