Finally, a day of rest. This past week or so has been action packed and has wreaked havoc on my body. I’ve really run myself into the ground this time.
We had our local Town Hall this last Tuesday. Since my sister and I have been getting involved in politics and community actions locally, this was a big event for us. This is probably the biggest project I’ve been a part of since I was working. I personally helped out with graphics, online marketing, some of the tabling organizations coordinating, and a few odds and ends. I was especially proud of myself for clearly articulating some of my boundaries and limitations (due to chronic illness) for helping during the actual event since I know brain fog and pre-syncope would likely prevent me from fulfilling regular tasks. The Town Hall took place in the evening, which is a pretty low-function time for me. I was able to help out a bit with setup and even did a small bit of tabling. As the night went on, it was all I could do to stay seated up in my wheelchair. There was a bit of a mishap with the speakers sending a loud noise that triggered my hyper-POTS adrenaline surges like wild. I eventually twitched a bunch and slumped over, so my husband (with my permission) pushed me out in my wheelchair before I had full on convulsive syncope, like I often get. We made it to the car before it started, thankfully. Even though I had to cut out early, I was so proud of myself for all I did and for making it out at all. These things are so hard on me and require so much recovery, that it’s a big deal for me to even try. I am really pleased with my bravery and determination.
My sister and folks went off on vacation, so my brother-in-law ended up needing some help with child-care for my nephew. I adore my nephew, so I was all about it. My husband took Friday to work from home and my nephew got dropped off bright and early. We got him for most of the day Saturday as well. We played with toys, went outside and played with bubbles, and laughed and giggled. Spending time with my nephew makes my heart smile- he is just amazing! It also takes everything out of me, even with my husband’s help. Each day, I had a big episode and had to lay down for a spell. I used caffeine to get through, which is a temporary fix that later makes my symptoms worse. It’s sometimes hard to set aside my own desire to have children when I’m with my nephew, so I feel a lot of feels during these days. I don’t know if I’ll ever have my own children, but I am so thankful for my nephew. I’m excited to get more toys for him, to watch him grow, and to support him in the ways that I can.
Yesterday was Mother’s Day. My husband, his brother, and I all set forth on the journey to my mother-in-law’s care facility. My mom and sister facetimed me on the way, so it was really nice to hear about how their vacation is going and to wish them a happy Mother’s Day. We finally arrived after a couple hours drive and got to have a nice visit. We brought cards and some photos which we used to decorate the walls, plus a little paper bouquet. I know this isn’t how she wanted to spend this day, cooped up in a hospital bed, but I’m glad we were at least together. She’s having trouble hearing now, but we have a keyboard so we can still communicate. I wanted her to know that we brought photos so she can see her boys, and she added that now she can see her girl, too. That really touched me. She’s going through so much and she spent energy to share that kindness with me. The drive home was brutal. I was so symptomatic and tried to keep it together since my brother-in-law was with us. I did some twitching and some fading out and had trouble composing sentences, but it was all pretty tame. By the time we dropped him off and got home, I was beyond done. My husband tried to comfort me, but when my hyper-POTS/NCS has me in and out of conscientiousness and filled with adrenaline surges, sometimes I just need stillness, though I appreciate the love and support.
One of the things I’m really struggling with during these intense episodes is crying. I find that when I am feeling very ill and I am pre-syncope or with heavy brain-fog, I have trouble using my coping skills to keep my emotions under control. I wish it would be okay to just cry during these times, since that seems like such a natural thing to do. Perhaps a week ago, I did end up full on crying and it was so bad. The irregular breathing and change in heart rate caused by crying give me the most out of control symptoms. I had passing out followed by intense adrenaline surge waking me with a huge startle complete with myoclonic jerking and I kept looping like that over and over. My heart hurt so bad from the strain. And I kept losing the ability to breathe. I can’t even explain it. My husband was there with me and was very concerned about the long pauses without breathing. He would tap me to induce an adrenaline surge just to get me to gasp and get breathing again. He says I’ve had this happen before, but this is the first time I was aware of it happening. So, even though crying is typically a very normal and healthy thing to do, it feels like I need to avoid it. I know I’m most likely to cry when I over do things and get so symptomatic that I lose control. This frustrates me because I’ve been able to accomplish more tasks and activities by accepting the backlash of symptoms. I’m afraid I will need to scale things back and take on less so that my symptoms won’t get so out of control. I’ve felt like I am so brave and determined to risk these things, but I must also recognize that I am crossing a threshold into recklessness at times.
Still, if the cause is supporting my family or community, I don’t see myself backing down any time soon. Caring deeply has been a blessing and a curse, but I would never change it for a moment. Chronic illness has a way of making one focused on the self, because the self is so overwhelming difficult to manage with so many obstacles. And self-care is absolutely crucial. I want to be able to help and support others, and self-care is part of how I do that. So, today I rest. I lay by the window and watch the birds visit my feeders. I watch the branches sway in the breeze. I delight in the squirrels and rabbits scurrying about picking up the fallen bird seed. I am so thankful for this safe-space, or “my nest,” as I call it. I’m scared for when my symptoms will worsen again, but I focus on the present and the beauty of nature. I draw strength here.