What Helps: Mobility Aids

This post is partly courage-training and partly the continued story of metamorphosis. Getting over that first hurdle—physically and mentally—to start using a mobility aid can be daunting so I wanted to share my experience. Many years ago, a lifetime ago even, I was a gymnast. I was the tallest on my team but I was a powerhouse. Floor and vault were my events. Let’s pretend uneven bars never happened. I used to soar in the air. We had a trampoline in our backyard and I would experiment and create new tricks all of the time. I remember what it feels like to fly.

For years, I was an avid hiker. My husband and I live two hours away from Yosemite National Park, and we would go hiking often, usually difficult, all-day hiking. On the long way up, sometimes you question why the hell you would ever choose such torture, but when you get to the top you feel exhilarated because you literally just-climbed-a-motherhumping-mountain.

Having to use a mobility aid before my geriatric years wasn’t my plan. Not everyone with POTS/dysautonomia needs a mobility aid, but some may be dependent on them. With dysautonomia, the body is struggling to maintain homeostasis and keep blood moving to essential organs, so movement and exercise can be exhausting and taxing. Gravity is a bitch for the vertically challenged, and sometimes the only way to be mobile and leave the house is to use a mobility aid. When the realization sets in that some kind of mobility aid is needed, it’s a disappointing and scary prospect. The physical struggle can pale in comparison to the emotional struggle to accept having to rely on a mobility aid. This is an invisible illness, and when you take that first step to get aid, it is no longer invisible, and some may question why you would need it if you “look fine.” Whatever our preconceived notions are about what disability and illness “looks like,” those notions are wrong.

I suddenly started having trouble walking a year ago. Since the POTS started, I have struggled to be able to stand still for any length of time but I could walk. Walking more than 30 feet at this point is extremely exhausting and precarious. My doctors have told me that the walking issue is not related to dysautonomia, so I am once again on the long road to diagnosis to figure this mystery out. Comorbidity and compounded illnesses are typical with dysautonomia.

I started using a cane in November last year, but I needed one long before that. Almost all dysautonomiacs have been told by some doctor somewhere somehow that it’s “all in your head.” Being told this when you are unable to function as a human being can permanently warp how you mentally navigate your disorder unfortunately. Unraveling the stranglehold this kind of invalidation has on your psyche can be a battle. I'm still trying to unravel it, so I spent months trying to pretend it wasn’t happening and believing that it was all in my head. 

When I finally relented and bought the cane, I was relieved. It has made getting around much

Sitting FTW!!

easier and I use it almost all of the time.  I also put off getting a disability placard and it has also changed my life. On the bad days, the VIP parking makes all the difference. I’m learning to let go of my pride and let my desire for a higher quality of life take over. The walking problem has worsened so I upgraded (downgraded?) to a walker, and I am also using a wheelchair. I can either leave my house more and use my wheelchair or walker or I can try to walk longer than 10 minutes and have to spend the next few days bedridden. Those are the breaks. Now I have to figure out how to decorate them. I bought my cane and wheelchair at a local medical supply store, but there are some websites with mobility aids, and I really want a cane from fashionablecanes.com.

For the chronically ill. you’ll encounter a variety of responses in the world when you have your cane, walker, wheelchair, etc. You’ll get

1.      Double-takes: “Why does she need that if she looks fine?” “Is that cane a fashion statement?” “Why is she pushing her grandmother’s walker?”

2.      Stares: Your days of blending in are over. At least look fabulous as people stare at you.

3.      Looks of terror: When people see me, sometimes they jump out of my way, rush to open the door, tear their children from my path. This comes from a place of kindness and can be pretty amusing.

4.      Questions: People will ask you about it. I don’t mind that much but I have never found a succinct way of explaining it. I was at a store with a friend recently and a guy said “You look too young to use that walker.” So I said “Oh, I’m older than I look. I’m actually 75.” Depending on how snarky I feel that day, my response varies. People will often ask if I was in an accident. Sometimes I’ll give them the 10 minute explanation of what is happening. They asked for it!

5.      Derision or Annoyance: This one is rare, but it can happen. If you are a human being in the world, you’ll encounter douchebags everywhere. Some don’t understand what it is to have an invisible illness and refuse to try to understand. These people have worse problems than needing a mobility aid. Try to smile at their ignorance.

6.      Sympathy: This one makes me the most uncomfortable. I don’t feel sorry for myself so please don’t feel sorry for me. I don’t mind if you want to hold the door open for me though.

This experience has given me a profound appreciation for the struggles of those who have been disabled their whole lives. Being disabled makes everything more complicated. Before this, I had no idea what the disabled went through on a daily basis. I had no idea how people treated them. I had no idea what a constant struggle it is. I had no idea how much people will focus on your difference. 

When I finally accepted that I needed a mobility aid, my life changed for the better, but I still resist every change along the way. I constantly tell myself “You can hold on to your pride and suffer and be home-bound, or you can get out in the world and try to live a more full life. You are not weak when you use resources. It takes an incredible amount of courage to take steps to protect your health.” Find the words you need to tell yourself to let go of whatever is standing in your way (no pun intended).

I may be kind of broken, but I can still do this

I may use a walker, but I’m still strong and athletic. Whatever abilities you had in the past do not matter anymore, but today does. Don’t let others' perceptions determine how you manage your health and the choices you make. You can take charge of your health and make a new life in the body you have now.   

Ups and Downs

The Downs 

Bedridden days, needing to go to the ER to beg for an IV, having to call a sub to cover my finals, not getting to say goodbye to my students, unable to drive, missing more work and events, unable to leave the house, comically starting a small fire in my kitchen because I’m too ill to cook. The many adventures of being kind of broken. The plot twist had a predictable ending. I expected to end my first year teaching full time in celebration. With a bang, not a whimper. I should be plowing through my last bit of grading so I can get the party (summer vacation) started, ready to fully participate in the first time I have ever had summer off since I’ve started teaching. I was supposed to be strong and ready. Things have gone downhill again. Something has shifted. A slight turn. The jump to the next lily pad. The last six months may have been the worst since this thing started. I long for some normalcy. Some simplicity. To do the things I took for granted not so long ago. 

The Ups

It may have been unspeakably brutal, but I did make it to the end of the semester. I had a student nominate me to be honored at an event and I had students tell me honestly how much they enjoyed working with me. I saw improvement in their work and I helped to get them there. I feel triumphant. I was a sick, lump of a person often, but I still managed to make a difference. I know that most people would have left a long time ago but I pushed through.

I got a walker—despite putting off that moment for many months. But I feel triumphant to finally have the courage to let go of my pride and do what I have to do to get around. It has a seat! I’m going to get a cup holder for it too.

Mel and I rocking some slow jams

I played music. I sang some of my own music in front of people two weeks ago, playing a short set. I have been waiting for that moment for two years. Singing and performing has become extremely difficult because it is so taxing on my system. It’s really difficult to sing when breathing is such a struggle, especially the way I like to sing, with every pore in my body. I was bedridden the day before we played. But I did it. I feel triumphant. I hope to do it again soon because I have new songs I’ve written that I’ve never played. I want to reclaim my life as a performing songwriter. 

2014 thus far has been little else but ups and downs. Triumphs tempered by setbacks. But this is the reality of chronic illness and a rare illness at that.

I don’t consider myself unlucky or trap myself into thinking about fairness. I try not to think in such relative terms. I feel blessed that I now have two months to try to regain my strength, reclaim some of my lost identity and passions, talk to my doctors, spend time with my wonderful patient husband, and figure out the way forward. Ready for some good days, some joy, and some air conditioning.

Lion Heart

Is this once lion heart

Only a shriveled core now

This once sinewy, lithe body—that turned, curled, soared in the air

A lump of flesh, withered and unyielding

Selfishly holding to just mere existence

But nothing more

Is this once verdant, crisp life

A pile of leaves

Breaking in the wind

This palimpsest of learning, the lasting wisdom

Simply a prating fool, a soundless voice

A page turns and I’m myself again

The memory of the climb, the climb

So high, so unshackled

So carefree

The rushing water, the many feet above

The sound I’ll never remember

The brightness I still sense

All these, embedded in my flesh

The memory now to keep

What Helps, Part One

I haven’t posted in awhile and the reasons are good ones. I’ve been living the very good life lately. My mom is doing much better but it will be an ongoing struggle with her health. Yet, my health has improved compared to the nightmare of December-March this year. Who knew? I am also feeling more optimistic and hopeful. I don’t wake up every morning thinking “What’s going to happen? Am I going to make it?” I have enjoyed this sudden plot twist.

I’m going to mention a few things that I am doing right now and what’s making a difference. Managing POTS and dysautonomia can sometimes be a lesson in futility. It’s constant trial and error for you and your doctors. Your doctors will likely not be well-informed about the rare condition, so you get the fun of being a lab rat and experimenting. Something can work for a few months and then suddenly it won’t anymore. I struggle with these four issues every day because of my compromised autonomic system: walking, standing, breathing, eating. You know, being a human being. As I mentioned before, dysautonomia presents differently for each individual, so some may experience similar symptoms or completely different ones. I am always looking for solutions (pharmaceutical and non-pharmaceutical) to manage these four struggles. This is the first list of things I have tried that help me be able to leave the house and be upright and bipedal:

Compression Stockings

Ok. I have made a terrible mistake. I wasted so much time not wearing compression stockings because they have c.h.a.n.g.e.d.m.y.l.i.f.e. I can’t even articulate what a difference they have made. Blood pooling in the legs is the hallmark of POTS and is the reason for the drop in blood pressure and heart rate acceleration. Compression stockings restrict this pooling to maintain circulation. I bought some cheap knee high stockings in 2012 and hated them, so I initially gave up on wearing them. I know now that if you want to try compression stockings, you have to bring the big guns. The quality stockings that work are not cheap. They are jaw dropping, mind-numbingly expensive. I’ve been wearing the thigh high Juzo Soft line and they have converted me. I have worn them every day for the last three weeks and I will never teach again without wearing them. I have actually been able to stand just for a little bit when I teach. My students must have no idea who I am. Breathing when I am standing is much easier as well. You can also get compression stockings at discount surgical but what I really want is some from this site . I am still hoping I can convince my insurance to cover the stockings.

I got a little overambitious because of the stockings and walked around our local mall with my mother for a few hours the other day. I spent the next day bedridden. I’m still recovering from my mistake. Something as simple as walking around a mall was too much apparently, even with the stockings. Compression stockings are great but I still have to limit my time standing. They are not a cure-all. 

I was worried about the fashion options with compression stockings but these are no longer your granny’s stockings. There are all kinds of color options now. I have found that the 20-30 mmHg firmness is best for me but you have to decide what works best for you. When my first pair came in the mail I wondered if I could even fit them on my arm they were so tiny. They have been a game changer for me and I cannot endorse them enough. You also get to wear sexy doning gloves just for putting them on and be prepared it will take a good chunk of your energy to get them on.  I wish I hadn’t wasted so much time not wearing them. I now have to buy some skirts and dresses to tolerate wearing them in the summer. I’m a jeans girl through and through but it’s time to expand my horizons in the name of staying upright. This is a picture of a new dress and my thigh high, footless stockings. Pardon the poor quality and the colorless, haggard look on my face. I can thank the mall for that.

Oh Salt, My Salt

Salt Sticks: Not just for athletes

One of the first comments you will hear from a doctor who suspects POTS or dysautonomia is to increase your salt intake. Imagine the cognitive dissonance when a cardiologist tells you this. The body needs salt to maintain blood volume and to hold onto fluids. With dysautonomia, the body struggles to maintain this balance. When POTS hit me like a semi truck while I was working on my PhD, I ate a strict diet of vegetables and quinoa for awhile. I was unable to eat at that time without serious GI catastrophe. I know now that that was a mistake. I needed some salt. I now put salt on every meal basically and have just started taking salt tablets. I avoided taking them for awhile even though my doctors suggested them because I worried I wouldn’t be able to tolerate them. I also drink V8 almost every day and Pedialyte is my go-to electrolyte when disaster strikes. Many people hate the taste of Pedialyte but it makes me feel so wonderful when I drink it that I could care less what it tastes like. I feel alive and human and it has saved me from going to the ER on multiple occasions. Every Potsie I have come across has an electrolyte source they love. I have tried powders, Gatorade, etc but Pedialyte is the best for me. 

Food: Why Must You Be So Good But Scorn Me So?

If you have read the earlier posts on this blog, you will see that the GI issues were the main reason why my life was sucking so hard over the last few months. This battle is unspeakable and the details shouldn’t be uttered in print. It was, is, and will continue to be the most difficult symptom for me. It is the reason I weigh 10 pounds less than my pre-sick self and why my weight constantly fluctuates. It’s more difficult than the tachycardia, trouble walking, dizziness, everything combined. It was one of the first horrific symptoms when this thing started. The worst part is, the GI symptoms aggravate every other symptom. Not everyone gets the GI fun with dysautonomia. The autonomic system controls digestion so it is not uncommon with dysautonomia. Many get gastroparesis, which is its own special form of torture. I see a GI specialist at Stanford in a few months who might be able to tell me what the monster who lives in my intestines really is and how it relates to dysautonomia.

When I eat, I feel nauseous, and if I am having a rough patch, I struggle to be able to get any food down at all. I am constantly looking for ways to manage this. I have been prescribed Zofran for these times, but I always prefer to try to manage without medication and go that route only when desperate. Once you are diagnosed, doctors will tell you to eat small, frequent meals that are low in carbohydrates and I follow this advice without question. I have no other option. I have also become mostly vegetarian—mostly because I still love bacon and I eat fish. Bacon is also high in sodium, so there’s a bonus.

Some people go gluten-free or even vegan, but I would prefer not to because bread and cheese are happiness. I also rely pretty heavily on liquids, soup and Ensure especially. I eat much healthier than I ever have in life, and POTS has been a blessing in this way. I eat a lot of fish and vegetables now. This is from a girl who lived on Velveeta and hot dogs growing up. I don’t like to talk about it.

I can no longer drink coffee unfortunately. Every cardiologist I have seen has told me this. If you have ever been to graduate school, you know that life is not worth living without coffee.  My pulse is still around 130 when I wake up in the morning so coffee is out of the question if I want to be able to function. I’ve been clean and sober from coffee for two years now. Sometimes you have to make sacrifices. I’ll always be a coffee-junkie in my heart.

Food and I have come to an agreement recently and our relationship has improved quite a bit. I stick to a pretty strict diet and to foods that I know that I can tolerate without any problems. It works for me. 

The goal with any treatment or symptom management is to still have an enjoyable life. There may be limitations, but it doesn’t have to be a joyless experience. I’ll discuss more in the next post, including my adventures in pharmaceutical fun land.