Accepting the Adventures I Might Never Get to Have Because of My POTS
I have been feeling awfully nostalgic lately. I somehow feel homesick, even though I am home and surrounded by my family. I think it is a mixture of a few things: 1. My youngest kids (twins) started kindergarten last month, reminding me how fast time is going by. 2. Those darn Facebook memories keep popping up in my feed to remind me of “better” days that were not all that long ago. (Although, I really do love seeing the Facebook memories, especially because my twins as toddlers were so stinking cute.) 3. I am coming up on my year anniversary of being homebound and often in bed with postural orthostatic tachycardia syndrome (POTS).
When I got sick last year, I never imagined that a year later I wouldn’t be back to my old self. Even though I knew what the prognosis was, I was sure that I would be the one to defy the odds and see a miraculous cure. Yet, here I am, a year later and not a whole lot better. I have seen some improvement, but am still very disabled.
I feel like everyone is in the fast lane of life — my kids keep getting older and bigger without my consent, while I am stuck in the slow lane, also getting older (and bigger, as weight gain is an unfortunate side effect of taking steroid medications and being fairly sedentary). It seems that I am going at snail’s pace with my hands tied behind my back just trying to keep up.
The days are long, but the months fly by.
I know when looking back at the past there is a certain element of seeing through rose-colored glasses — I mostly remember the fun times and happy moments. The years of infertility followed by postpartum depression, sleepless nights being up with colicky babies, and the countless mom fails of my past seem to have dimmed and blurred a bit. It somehow doesn’t keep me from looking back and longing for what once was.
Just a few weeks ago one of my aforementioned Facebook memories popped up reminding me that six years ago I ran the Hood to Coast 200-mile relay race. I remember it being so hard, but feeling such a rush of accomplishment. In all honestly, I never really enjoyed running, and I probably wouldn’t do the race again whether I was healthy or not. But the point is, I was physically able to do it. I could push myself physically, even though it was hard. I miss that!
That same year I pushed myself to do a lot of things I had never done before. For example, I went on a four day backpacking trip to the floor of the Grand Canyon and back out. Other than childbirth, this was one of the most physically taxing things I’ve ever done. But I was still able to push through and do it!
That year has been officially dubbed our “Year of Adventure.” We worked hard, played hard, and accomplished a lot of goals. My husband and I went to Hawaii and body boarded, road bikes down the volcano, snorkeled with sea turtles, zip-lined over the rainforest, and hiked O’heo Gulch past the seven sacred pools and through a bamboo forest to reach the amazing waterfall at the top. (It really was as magical as it sounds!) We took our kids to Disneyland. We went hiking and went on weekly family bike rides around a nearby lake.
I’m saddened to think that there is a very real possibility that I may never be able to do these things again. The many future adventures I’ve dreamed of may never come to fruition — and after almost a year, I am just now beginning to grasp that reality.
I can still remember vividly one of the family bike rides we went on a few years ago. My daughter was probably 6 or 7 at the time and on her little purple one-speed bike. It was several miles around the lake trail we were on and by the half-way point she was more than ready to give up. Well, at that point you really don’t have much of an option. Whether you go forward or go back, you have to keep riding because that’s the only way to get back home. I went slow with her and we took a lot of breaks. I’d say to her, “Repeat after me: I am strong. I can do hard things.” She would look back and say. “I can’t do it.” So I would repeat myself again until she finally repeated me as well, and we eventually made it around the lake and back home.
“I can do hard things” has been a family and personal motto for many years now. As a former fitness instructor, “I can do hard things” often meant pushing my body to its limit and then going beyond. Any exercise enthusiast knows the only way to become strong is to break down your muscle and let it rebuild. When you feel the weakest is often when you are making the greatest gains.
Although the five words have stayed the same, this personal mantra has taken on a very different meaning in the past year. “I can do hard things” in the past has generally meant pushing myself physically. But the game has changed and I can no longer test my physical limits. (There is no pushing through anymore; attempting to do so just means kissing the floor after I’ve collapsed because my body ceases to cooperate.) Forget the adventures, I can no longer even do most of the mundane things I used to do, like go to the grocery story, pick up my kids from school, deep clean my bathroom (OK, I don’t miss that one!).
Right now, “doing hard things” means not doing hard things. It means letting go of all the things I want to do, and being content with the things I can do.
As I look back on all my fun memories from the past, I feel homesick for what was as I am still coming to grips with the reality of what is. I have to admit that my life isn’t all bad now — I recognize that I have a many things to be grateful for. It’s just different, and sometimes accepting “different” is hard.
Some days I feel closer to acceptance than others. Some days I echo the words of my daughter and say “I can’t do it.” But then I pick myself up off the floor (literally), and remind myself that emotional and spiritual strength builds the same way as physical. When you feel at your weakest is often when you have the opportunity to make the greatest gains. So although I am not always successful in my daily battle with POTS and with life, I know I can accept and even be happy in my circumstances because… I know I can do hard things.
This blog was originally published on Mommy Can’t Dance.