Accepting The Changes of Dysautonomia

Before I get in to this post I wanted to add that it was not lost on me that I couldn't find one picture to use of a young/ish woman using a walker. This lends to the apprehension that I felt as I struggled through this real time and why I truly wanted to write this post. Many people struggle with invisible illness and that is bad enough but once it becomes visible without context, the attention can be too much to handle.

As a person with POTS, I've had to deal with many challenges with my physical abilities with the hardest one is not being able to stand or walk for a long time. The decline has been so subtle that I even felt like I was gaslighting myself. Year after year the distance gets shorter and shorter and I have been more isolated. All while I look very capable and truly want to do things but once that wall comes down like a Thowmp in a Super Mario game, the day is over. Though discouraged, I refuse to give and often make plans to make sure that I can try and function outside of my home and get to enjoy small things while I can. I try to manage it by making sure that the area is drivable, has accessible parking and has ample seating, though the floor is always an option. I have toyed with the idea of getting a rollator to give me the ability to sit when needed and also to provide assistance when I feel wobbly. However, I wasn't ready to pull the cloak off the invisibility of my disability all at once, so I have suffered and missed out. It's difficult enough to be a mediator between the brain and body to convince them to cooperate while doing literally anything. The added stress of dealing with the questions or looks is not something that I wanted to deal with. Yes, it is pride. I am fully aware. It is also my vain attempt to hold on to my memory of the old me. But I'll move on for now. Ironically, I jumped at the chance to get a disability placard and eventually a full license plate. There are tons of stories of people being confronted for parking in handicap spots because they look seemingly normal. The rude looks, the notes and the actual comments made really can be a lot when you are already just trying to be. I even whip around in one of the motorized cart when I need the extra help to finish grocery shopping. But why is pulling the trigger on my own device met with such internal resistance?

Each year Dysautonomia International holds their conference in a different city and this year it was held in Raleigh, NC in July. Each year they have a silent auction for a variety of items to raise money that goes towards funding for medical research. A couple years ago when it was held in the Washing DC area, I got a Canada themed gift basket that I gravitated to after experiencing a trip to Toronto. This year there was a Trionic Rollator that was available at an extremely reasonable price. My eyes lit up because I visualized all the things that I would be able to do with this device. I sized it up to make sure that I could use it comfortably and moved it around a bit. The sheet next to it was empty because no one had bid on it yet and my daughter encouraged me to put in a bid as well as a few others that saw me admire it. But I hesitated. I walked by it maybe a dozen times, but I still didn't put name down on the sheet. The cost was within reach because a brand new one would cost me almost $2000 USD and it was maybe a tenth of the cost. Still, I hesitated. I figured that there was someone else who could use it more. In fact, there were people there is various states of mobility, and I was able to almost run around the meeting venue. Oh, I paid for that later and I attribute that to the increased adrenaline related to my Hyperadrenergic POTS. I hung around long enough to see the auction and I left empty handed. I had talked myself out of it and with a good heart, reasoned that someone needed it more, more deserving. It didn't occur to me until recently that why didn't I think that I deserved it? A lot of unpack for sure but the truth is, I need help more than I let on.

Recently, we went to the African American Museum in Washington, DC. I've been there when it first opened and I took public transportation at that time because I lived locally and it was convenient. I think that was the last time that I was able to do that. It was a grueling experience overall and I didn't really enjoy as much as I tried to endure. If you have never gone there are maybe 4-5 floors and you start at the bottom which starts before slavery and as you travel to the top floors you go to current day. I went again this August, which is normally impossible due to oppressive heat and humidity, but we had a bit of a fall preview, and I was able to venture out on this recent trip. I drove and parked right up the street from the museum. Both were a win for my dysautonomia! Inside was a bit different. I went with friends and I had to wait and go at their pace. The problem with me and my Dysautonomia is that I am on an internal timer that doesn't care about delays, alternate plans or even if I am mid-sentence. When that alarm goes off internally, my body says that I am going back to jail and I can't pass go. Sitting won't help I need to go home before my body completely shuts down! I really could have used a wheelchair or a rollator that day but I was happy to be with friends and family. We didn't get to finish everything and I wasn't even mad. I was just ready to go. Right after that I experienced a new medical event that forced me into a change that I wasn't mentally ready for but physically, I was way overdue.

The body has a way of making executive decisions for you even though you didn't officially cosign on the idea. About ten days after my trip to the AAM in DC, I experienced an event of extreme dizziness. It was so bad that I had to crawl from my chair to my bed and every time I turned my head I felt like I was going to tumble right off the bed. My distain for going to the Emergency Room to delay going right away. The true gaslighting and drug seeking side eye is strong for people suffering with POTS. This is even worse that then current delays in ER in the US right now. I didn't end up going for 3 days. Actually, I tried to get seen at my regular Doctor's office and was told to go to the ER. I almost cried because I knew that going would make me way worse before I left better. I ended up having this weird type of absence seizure thing. No real diagnosis but that is what we are going with for now. Based on the concern for my symptoms, I was admitted to the hospital with the suspicion of a stroke. Turns out that I experienced an acute Vestibular Event. (Editing Nicole here. It Later to be confirmed to be a prolong Vestibular Migraine. I am currently experiencing it at the time of editing this post).

I had Vestibular testing done this week and plan to have an appointment in the few days to go over the results. A side effect of this episode made me temporarily dependent on a walker. When the Physical Therapist in the hospital offered it, I wanted to decline it. I actually did decline it. I talked myself out of it even though I was very unstable on my feet. I had the FALL RISK notation by my door and the neon yellow bandage on my wrist. My bed was even alarmed. Somehow, I tried to rationalize my way OUT of needing the walker. The Therapist couldn't force me to take it but her eyes were saying that I should. But it wasn't until my daughter, also in the room, chimed in and said, "TAKE THE WALKER MOM". So, I have him and I called him Luke. After my discharge from the hospital, I reluctantly used him to walk from my car to my home. I live in a cul-de-sac, and I felt like every neighbor was at their window. They saw me leave my home a few days prior walking on my own but now they see me return home using a walker. It was humiliating for me because I didn't make the choice to get the walker, my body made it for me.

For the next month or so Luke was on hand to provide assistance, and I started to get rid of the resentment that I had and the shame too. I still was a bit hardheaded though because I decided to head out to with my mom and stepfather to the mall to get the band changed on my grandfather's old watch. Did I have to go? Absolutely not, but I was stubborn and just wanted to go. Boy was that a bad idea. It was a bit of a walk to the store from the entrance, but I was determined to make it all the way there. With Vestibular issues, lights, sounds and even movement of the head and body make everything worse. I held on to the railing and wobbled down the pathway to the store. I felt like the alien from Men in Black that took over the farmer's body. He was going about his business trying to look normal while his host body was falling apart. I was sweating profusely, and it increased with each step. I suspected then that the stress from my Vestibular system also aggravating my Autonomic Nervous System. I was extremely unstable on my feet and really wanted to do nothing but lay down right there in mall on the floor but that would send me right back to hospital. I didn't want to need a mobility aid. I just wanted to have it when I felt that it was necessary. I made it to the store and I tried my best to conduct business with the beads of sweat and probably the vacant look in my eyes. 0/10 recommend.

Once we did make it home, I was exhausted but I learned that I needed to take the advice that I would so readily give someone else. Put away the pride and just accept the help. This time, in the form of Luke. We had our first outing on my first Sunday back to worship. Don't you know that I still wanted leave the walker home. But my daughter who doubles as my emotional support child, urged me to take him so in the trunk he went. Unveiling Luke around people that I knew very well, not just strangers, made me want to find multiple excuses to just go back home. But why let this thing win? I have been fighting all kinds of dysfunctions for years and why was this time any different? When the invisible illness becomes visible I no longer have the ability to choose what people see. Of course, I have had times in the past where there were flare ups that I couldn't control and yes, there were extremely embarrassing. But this wasn't some immediate uncontrollable thing that just happened upon me. It was a choice. This was also about trust and letting people to see vulnerability that is often reserved from a select few. Guess what? I didn't die of shame. No one made me feel anything other than my old self. They hadn't seen me in a month, but I was missed and welcomed with my new occasional buddy Luke A friend of mine who also uses a walker even challenged me to a race! I learned to just take the help and not to be so stuck on this curated image of myself. Be flexible and modify because the more I fight against the help, the longer that it will take to get back to my baseline. Right now, Luke the walker is in the closet by the door just in case I need him. It's been 2 months since that day that I took him out for a spin, but I still get dizzy and wobbly on my feet from time to time. I had to be wheeled out in a wheelchair one evening after bible study. I learned to accept the help and to not hesitate when offered. The old me would have likely said that it was ok while I stumbled out of there too nauseous to stand. I am interested in getting a rollator now but we shall see how it goes. I'll provide an update if I add someone else to my arsenal.

Until Next Time 🩵