I have been experiencing my own personal miracle. My feelings are very mixed about this, however, and my reaction is not what one might have expected. As I discussed in my last post, I decided to go off of my POTS medication (Corlanor), because my symptoms were worsening on it and because my husband and I are interested in trying to have children (meds and pregnancy don’t mix). Initially, tapering off the medication was a bit rough and it turns out I had a cold while it was happening. Once it really started getting out of my system, however, I noticed a huge change.
I very quickly started to return to a more functional level with my symptoms. I am certainly not cured, but I feel more like I did before I had all this doctor intervention. I honestly thought my condition had been progressing this whole time. It was a slow and steady decline in my ability to function over the last year. My sharpest decline was after the wedding, and just before the wedding was when I switched to this new medication. The medication I was on before that was no picnic either. Over the last six months I have become a part-time wheelchair user and struggled with frequent fainting, overwhelming fatigue, and long spells of disorientation. It’s all something of a blur.
It’s been shocking to feel myself coming back. I first started noticing it when I went to the kitchen or bathroom and I could stand for longer than usual. I wanted to explore, but was afraid of overexerting myself and setting of a flare. On Thanksgiving, I hardly used my cane and felt very clear headed. I even received my new wheelchair and left it in the box that day. By “Black Friday,” I was ready to test things out! My husband was lagging on getting ready, so my first activity was dancing in the living room. I danced to three songs and enjoyed the view out the window that can only be seen at standing height. I was on cloud nine, but decided to rest up for our outing. I hadn’t danced since our wedding and dancing is a great love of mine. My husband and I decided to try going to a restaurant deep in a shopping center and did so on one of the busiest days of the year. I have been unable to walk more than 20-50 feet without resting for a while. So, I have been unable to eat at restaurants that are a walk from the parking lot without a wheelchair. This day, I easily made the walk and enjoyed a lovely meal. I decided to push it. We went walking around the entire center, even popped into some stores, and bought a new jacket. Just like all the able bodied people, well, plus a cane that I folded into a stool whenever I otherwise would have needed to stay standing. I felt like crying from happiness. I was overwhelmed to have such freedom. I had no expectations that I would continue to have these new abilities, so I just reveled in the moment. I did start to feel symptoms come on and we got back to the car before they got too bad. Then, during the ride home, I bounced back! I recovered so quickly! When we got home, I asked my husband to go on a walk with me. We went walking around the neighborhood and he held my cane for me. It started to sink in that I was really doing these things. I had a few moments where I was just in disbelief. I really wondered if I was dreaming. We went out to an area filled with trees and I could feel the air in my lungs, the slight burn of my leg muscles tightening and relaxing beneath me as each foot rose then fell. The earth sank beneath my boots with each step. I wanted to cry, I wanted to shout, I wanted to run, but I just smiled.
I really thought this must be a fluke, a stellar extra good day. I’ve had really good days when changing medications in the past, so I thought it would be like that. On Saturday, we had a second Thanksgiving with some in laws, which went well. Again, I was able to get around just fine with just my cane/stool. It was raining that day, and after our family meal, my husband and I drove around and looked at an area where there was a house we were interested in. Due to the rain, we didn’t try for too much more adventuring. On Sunday, we went and saw that house with our realtor and I was pretty excited about it. Still, I started to feel really confused. I was trying to find a house so that we could alter it to be wheelchair friendly. I was in a rush to do it because I have been feeling trapped by the stairs in our current home. I started wondering if I was actually going to be needing to use the wheelchair daily like I had been, or if I was going to be able to have this improved mobility. I started to feel like maybe I could really have a big improvement with my symptoms.
After checking out the house, we planned to have lunch with my best friend. We were early, so we walked around the town and went to some shops. I kept thinking about how I could never go into some of these places with my wheelchair. We covered some real ground, but I did feel symptoms come on and did need to rest. It was a real treat meeting my friend. Instead of just trying to survive, I could follow the conversation and really enjoy our time together. Even though I’ve seen her lately, it felt like it had been a long time since I felt that present around here. I was so wonderful. After lunch, my husband and I drove to another neighborhood where we had looked at houses. We walked around a crowded eatery and then walked around a lovely park and neighborhood. I tired and needed breaks, but it was still phenomenal to be walking so much and I had quick recovery times.
By this time, I found it more difficult to believe that I was having some good days just because my body was adjusting to changes with meds. I started to think, hey, maybe these meds made my condition so much worse this whole time. Rather than feeling overjoyed at this prospect, I started to feel anger and fear. I was wondering why a doctor would encourage me to stay on these meds for so long. I had asked to go off of them before, but he pressed me to try longer. It angered me that he would do this to me. I started feeling fear of going back to how I was. I had this new taste of freedom and I did not want to give it up. I was no longer satisfied to have a few good days. I wanted to keep walking, to keep these abilities. I was perplexed that I would not focus on the joy of improving and that so many dark feelings came floating in.
Mondays are usually a big recovery day after hanging out with my husband over the weekend. This time, however, I knew I was going to the DMV for my license/ID name change the next day, so I wanted to freshen up in case the redid my photo. I was able to touch up my hair color, wash my hair, and dry it. Anyone with POTS knows how hard it is to wash and dry hair, and to take a shower! It was really starting to sink in. I may still have POTS and lots of symptoms, but I have consistently been able to walk and manage my self care for several days in a row, which had been huge struggles for the last few months. I did go to the DMV yesterday and again, was able to do it with my stool/cane. I did get a comment from someone else in line that I was clever to bring a chair to DMV- oh well, not everyone gets it. After the DMV, I went to lunch with my mom, sister, and nephew. Usually, I am so spent after eating, but I went out shopping with them! I went walking around three stores! I bought a bunch of clothes for my nephew. That means I picked up items, carried items, and then checked out. All the while, I was chatting away with my family. I really can’t believe this is happening. I did get worn out and asked to go home. That evening, I asked my husband if he wanted to go for a walk. He asked me to go with him to walk to the local taqueria for dinner. My husband has been going by himself to eat dinners down there the whole time we’ve been living here and I’ve never been able to attempt to go with him. I went. I made it there. I had a lovely meal. I walked back. I made it home. WTF is going on?!?
I keep thinking about how much emotional work it has been to adjust to the decline I was in. I was doing psychological backwards hand springs to make peace with my decline in mobility and my need for a wheelchair. Now I don’t know what to do with all of that. I desperately want to believe that I will be more functional now. I can still use my cane/stool, my compression stockings, my salt loaded drinks, and yes, even my wheelchair for things like Disneyland. All of these adaptations have been very beneficial. I want so badly for these improvements to continue. I feel guilty for the anger I am feeling, like perhaps all of that suffering was just a bad medication choice. Perhaps that’s easy for a doctor, but I’ve been living this. I’ve watched my husband lovingly struggle to help me each day while he deals with his own feelings. I’ve seen my family go and do things with out me as they try to keep me included, but have a hard time wrapping their heads around my limitations. I’ve seen my friendships suffer as I forget to return calls and stay in touch. I wish I could just enjoy this without being angry about the past and fearful of the future. I want to focus on being thankful for this amazing gift here in the present. I feel very uncertain about what my health will do next. I want to be so careful about building up my stamina and getting stronger with time. I want to get active without overdoing it and falling into relapse. I want to start picking up my dreams that I have set down. While I still know I won’t be able to work the land in an ecovillage, maybe I can do some sort of environmental volunteer work. I think I can babysit my nephew now instead of needing someone else there to assist me. I may even have a real shot at being a mom. There is so much I want to do with my life and I feel like so much more may be available to me now. I so hope that’s true.
And, I was about to post the above, but ran short on time and had to go to a doctor’s appointment. I just now got home from that appointment. I felt pretty good earlier, but had a migraine come on gradually while I was at the doctor’s. I went there without my wheelchair and barely made it back to the car. It was symptoms per usual like the last few days never happened. My vision was blurry, my head was swimming, and I had to sit on my stool/cane and rest several times to get back to the car. What does it all mean? Am I returning to that declined state? Is it just a migraine setting my symptoms off? I don’t even have the energy right now. Time to go crawl under a blanket.