3 Reminders for When I Get Caught Up in the Before-I-Got-Sick Me

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When I was in my sophomore year of high school I was diagnosed with postural orthostatic tachycardia syndrome, or POTS, after months of being symptomatic. The onset of POTS was sudden. One week I was playing all four quarters of a basketball game, and the next I couldn’t stand for more than a minute without feeling dizzy and nauseous. Because of this, it’s become so easy to think of myself as before-I-got-sick me and after-I-got-sick me. But when I’m feeling down and reminiscing about “the good old days,” I try to keep a few things in mind.

1. I’ve been able to discover more about myself.

Being away from athletic activity, friends, school, and life in general left me with a lot of free time, albeit fatigued. Through this, I’ve been able to discover a love for music and art that has stayed with me, even as I’ve been able to return to some activity.

2. I’m more understanding.

Living with POTS has opened my eyes to the world of illness and disability, and I do my best to reserve judgments for others now as a result. Whereas before I may have raised my eyebrows at someone sitting down in a grocery store or sleeping at a museum, I’ve now become one of those people, and am able to see the world from a new perspective.

3. I’m still me.

Although I’ve gone through a major life change, I’m still the same person. My circumstances have changed, and my viewpoints have been shifted, but at the end of the day I’m not so different than the girl sprinting for a lay-up two years ago.

A chronic illness diagnosis rocked my world, but I won’t let it dictate my life. While some aspects of my life will never be the same, I know I can always count on myself, my thoughts, and my ideas to stay with me, no matter the battle.

Image via Thinkstock.

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I Wouldn’t Be Who I Am Today Without My Chronic Illness

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The battle you face when your chronically ill is exhausting. It’s a constant battle not only physically but mentally and emotionally. Being chronically ill isn’t what you may think it is — a severe cold here or a hospital visit or two there. It’s a constant war that your body is fighting to stay alive.

I have postural orthostatic tachycardia syndrome (POTS) and a handful of other things I deal with every day. Most of the doctors I’ve seen have never even heard about it, or they know someone who knows someone who faints every now and then if they don’t drink enough water.

Life, at times, can be difficult. There is so much I wish I could do, so I dream about doing those things every day. But I am blessed with the life I have.

The hardest part about being chronically ill is the feeling of being small. You feel like this little girl who isn’t capable of doing the simplest of tasks. There are days I am completely bedridden. I’m homebound and away from work, school and my friends. I was supposed to be doing activities in high school and experiencing once in a lifetime events but I’m in bed.

I started to feel sick when I was around 9 or 10. We noticed something was wrong when I started got sick at the drop of a hat and became horribly winded when I ran up and down the basketball court. I suddenly became too tired to attend dance class. (I live and breathed ballet at the time and would do anything to be in class.) Then one morning, I suddenly fell. But before that life-changing moment, when I had my first near-syncope episode, I had a fulfilled life.

I mean, don’t get me wrong, I am so blessed by the support of my mom and my significant other. I am far better off right now than I was last November when I was diagnosed. I miss the days when I could stay out late and wake up early and when things were carefree. Man, do I miss the feeling of normality.

Even though I’m able to go to work and attend school at my local college, I never forget I am sick.

There are days I believe it’s the worst I have ever felt. I can’t get out of bed and have to have my mom bring me Gatorade,

My medication and food. This is when I’m hardest on myself. I know I can do these simple tasks, but my body fights me. I beat myself up because I should be able to do these simple tasks. I’m ashamed by the fact I’m so dependent on others.

I feel like I let everyone around me down: my friends, my family, my coworkers. But it’s the exact opposite. For those who are chronically ill, we have to tell ourselves that it makes us stronger and more determined.

I am amazing. I continue to fight every moment of the day to keep living just like every other healthy person. I have learned to act as if I am OK to make others around me happy. I have become the master of chugging bottles of water and nasty-tasting electrolytes, waking up at 7 a.m. every day to make sure I take it slow and watching my carbs, protein and sugar intake due to hypoglycemia. (Having POTS wasn’t enough, so adding more things for me to handle makes me a great juggler.)

Getting ready for class and making sure you have enough spoons for your day.
One spoon to get out of bed, two to shower and another three just to make it to class and get in your seat on time.

Then recalculating your spoons because you have dance class later and you need to dance hard to show you know your routines because you have a show coming up. But you don’t have enough spoons. You can’t do this without your spoons. How am I going to have enough spoons to get through this day? Stand up to go get fresh air because your heart is fluttering because you don’t have enough spoons. Then slam, you faint, you’re out of spoons.

Somehow, I can still get ready, pull myself together and smile. I do this without telling anyone I cried myself to sleep because I had a sensory overload and felt pity for myself and those around me who have to deal with me. I have war that is constantly happening within me, and I am gaining ground every day. I can go to work and attend school with my heart flying, thinking I am about to pass out and no one would ever know. I now know the expression “grin and bear it” as if I made it myself.

This is what I have learned in this sometimes unfair world. I am blessed to be able to live, breathe, laugh and all the beautiful things that come with this crazy thing called life.

Yes, there are times when life can be cruel and unfair, but I am beyond proud of myself. I have such a high understanding for others living with the pain of a “chronic illness.” I wouldn’t be the person I am today if I hadn’t faced challenges. I may never be the person I have always dreamt of being, but I will be much more than I have ever hoped.

Lead photo source: Thinkstock Images

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When Your New Diagnosis Has You Questioning Who You Are Now

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“Who am I?” It’s a question that seems to rattle through the minds of most 20-somethings. I have many friends who go on “Eat, Pray, Love”-type journeys through the world hoping to discover who they truly are and what their purpose is here on Earth. Questioning your identity and purpose seems to be a pretty well accepted rite of passage. But what happens when you think you’ve found who you are and what your purpose is, and then everything changes?

In my late 20s, I found myself on a journey of self-discovery. I spent two years working through anxieties, challenging my low self-image, and healing old wounds from the past. I learned to accept and love myself for who I was: loud, energetic, boisterous, friendly, optimistic, nerdy, goofy, talkative, and passionate about life. I accepted my old battle scars and found a way to break free from negative forces that had been feeding into my self-loathing. My daughter was only 2, and yet I saw so much of myself in her as well, and I wanted to model to her the ability to love and accept oneself. Loving her helped me to love myself.

And then, one day, everything changed.

I went to the ER one day with violent tremors, chest tightness, blurred vision, mental confusion, nausea, and feeling like I was going to pass out at any moment. Since that day, I have been diagnosed with postular orthostatic tachycardia syndrome (POTS) and Ehlers-Danlos sydrome – hypermobility (HEDS). I quickly learned that I’d had HEDS my entire life but had never been diagnosed, my symptoms always being dismissed as something else. POTS, however, was new to me. It hit me hard and has yet to back off. Even with medication and lifestyle changes, I still struggle every day to complete a fraction of what I used to be able to do.

At first, I denied that my diagnoses would affect my identity at all. I held on to the hope that this was temporary, a fleeting illness that would leave as suddenly as it appeared. Now, almost a year after this began, I am being told that it is most likely something I will live with for the rest of my life. I still have not fully accepted this fact, and may never truly accept it, but part of the process of acceptance for me has me yet again asking the question “who am I?” and “what is my purpose?”

Before becoming ill, I would dance and sing wherever I was; at the grocery store, at work, standing in line at Starbucks, walking up and down the stairs at home. My daughter and I would have dance parties daily where we would jam out to her favorite songs. I would sing her lullabies (well, if “Let it Go” counts as a lullaby) every night. I directed and acted in plays, something that I had been doing since I was a little kid. I would play games with my middle school students that had us running around the classroom together. All of these things seemed so integral to who I was, and I can’t do any of them now.

I find myself often feeling lost, confused, angry. How did I get here? Why did this happen? What will my future be like now? I felt that I had just finally reached a place of happiness and purpose, and now I had been thrust out into the abyss of chaos. There are days when I feel like I am falling, spinning, and reeling through space and I can’t get my feet back on the ground. I lost a person I truly loved, myself, and I am not sure if I will ever find her again.

Now, I am tasked with the job of trying to find myself again. Well, maybe that’s not entirely accurate. It’s more like I am rebuilding myself. My illnesses tore down and destroyed so many of the building blocks that made me who I was before. I’m now searching for new building blocks as well as sifting through the wreckage to see which blocks may have survived.

I am still a mother, significant other, teacher, daughter, sister, mentor, and artist. The way I fulfill these roles has changed greatly, but they are still part of who I am. I have not lost that. I cannot sing, dance, and act onstage, all things I’ve spent my whole life doing, but I can write and maybe even find new ways to express myself. Due to the fatigue, I am not as energetic or boisterous as I used to be. However, I am still friendly, goofy, nerdy, passionate and optimistic. I can’t be as social as I want to be or as active in the world as I once was, but I am still here. I am still trying. And I still matter.

There are times when I will look back at what I used to be capable of and I end up feeling so small in comparison. Or I will watch others doing the things I wish I could be doing and feel jealous or sorry for myself. But I try to instead look at what things I do still have as well as what things I can still do. I get excited now by little accomplishments that I never would have thought twice about before, such as: sweeping the floors, a day without a headache, walking without assistance, surviving a social outing, a week without a doctor’s visit, etc. I feel the “old me” deep down inside screaming for the chance to dance, sing, and be the life of the party again. But then I think that maybe being able to do those things weren’t as important to my identity as I thought they were.

Maybe I haven’t really lost what made me “me” after all. Maybe all of those actions and activities aren’t as important as my attitude and spirit. Maybe in the mix of all the things I’ve lost, I have gained quite a few things as well. I’d like to think that through all this I have become a little stronger, a little more understanding, a little more educated, a little more emphatic, and a little wiser. So, the challenge may not be in trying to find or redefine who I am. The real challenge is in finding how to hold onto who I am through it all.

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What It Really Means When a Person With Chronic Illness Decides Not to Walk

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As I muse on my change in circumstances with postural orthostatic tachycardia syndrome (POTS), I run my situation through various lenses from my studies of anthropology to my stores of fantastical tales. I find myself in the land of bipeds. Our predecessors made great headway when they began walking on two legs, allowing for their hands with opposable thumbs to work on tool use. I watch my nephew crawl over to a table and lift himself up while the family cheers him on, encouraging him to stand on his own. We speak of strength and courage metaphorically as “taking a stand” or “standing one’s ground.” Standing is part of what makes us human.

Standing makes me weak. The longer I stand, the less blood is in my head and the more blood pools towards my feet causing my body to get weak and my mind to grow foggy and distant. The ground begs for me to embrace it, for all I need to do to seek relief is to let go of standing and to get horizontal, to lie down and take the burden of gravity off of my nervous system, my heart, and my veins. And if I do not lie down in time, my body will surely give way and come crashing to the ground. In the land of the bipeds, lying down is akin to giving up and failure, yet this is where my strength and clarity lies.

I am changing, slipping away from the upright human biped I once was. I have fought, kicked and screamed. I have gone to doctor after doctor, received a variety of treatments, and followed the directions of doctors. There is a perception that doctors can treat and cure diseases and conditions and that if a person is not healthy, it is because that person is doing something wrong — that they are responsible for their own demise. It makes people feel safer to believe that, but of course it is not true. You can do everything right and still be sick and still get worse because the field of medicine is science and not magic. There comes a time when one has to stop kicking and screaming and move towards acceptance and adaptation. If anthropology taught me anything, it is how strong the drive for life is and how adaptation is the key to survival.

My adaptation is to lie down and to you bipeds, this may look like giving up, but it is not. Professionals, family, and friends alike wring their hands that my body will atrophy and I will waste away to nothing. No. I have a physical therapist. I am exercising, but I do so while lying down. I know walking is our primary means of locomotion. I use mobility aids. I use a wheelchair at times. Wheelchair use does not mean that I cannot walk or that I will get “too” dependent on it and waste away. Please understand that every time I walk, I feel very ill and I risk injury from falling. I want to go outside. I want to feel the sunlight on my skin and the fresh air in my lungs. I want to be part of life and I can’t always do that on my own two legs. I am so tired of feeling faint and falling. When you see me in a wheelchair, please see that I am actively engaging in life — I am adapting. I can still exercise, but it doesn’t have to be upright, it doesn’t have to be walking. If you see me in a wheelchair one day and walking the next, please recognize the variability of my condition and that adaptation is custom fit for each day as it comes.

The daydreamer in me thinks back on the story of the mermaid who so desperately wants to be part of the human world that she wishes for legs. Depending on which version you read, her success varies, but in the original, she is returned to the waters as sea foam. I grew up walking through this bipedal world and now see myself more and more in the metaphor of the mermaid. As much as I want to walk, skip, and run through this world, to be a part of it, I need to find another way. There is no magic sea witch or prestigious doctor to grant my wish. 

So, I will be a mermaid in the land of bipeds. I will give my body what it wants and recognize that my body doesn’t work like everyone else’s. I will adapt and find methods to be fit in my own way and use mobility tools when needed to stay engaged in this world. It may not be conventional, and many may question why I have “given up” or “let myself go,” but I will know that my choices reflect my resilience and strength.

The next time you see someone with chronic illness or disability and question their choices, please take a moment to reflect on what it might be like to live as a mermaid in this world. What would you do to adapt and how would it feel to have others expect you to be something you simply cannot be?

Follow this journey on Chronic Gravity.

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10 Things to Consider When Flying With POTS

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Preparing for a trip can be overwhelming for anyone; however, planning for air travel takes weeks of planning and days of prepping your body if you are in the dysautonomia club.  I recently took a trip with my husband and it was my first air travel with my new POTS-body. All of your ducks need to be in a row in advance. With my condition, as well as many others, there is little room for quick corrections with my health — meaning if I become dehydrated, for example, it’s not something I’ll easily be able to fix in an afternoon.

I have compiled all of the considerations that I find to be the very most important for air travel.

10. Wheelchair — It’s not optional for me on a day of airports and so much walking. Airlines want you to tell them at the time that tickets are booked if you will be using a wheelchair, and if you’ll need to use an airport wheelchair or if you’ll be bringing your own.

9. Portable Oxygen Concentrator — If you anticipate that you could need oxygen on board during the flight, you’ll likely want to have a portable oxygen concentrator. I have in-home oxygen and portable tanks, but those are not allowed on the plane. While there were several online companies recommended by the airlines, I found that going through a local health supply was cheaper and I didn’t have to pay for shipping both ways. I found that they generally rent the systems by the week, and you’ll need to make sure you can pick it up the day before as it may need to charge that night. Also, you’ll need to make sure the make and model is an approved version per the airline’s guidelines listed online.

8. Paperwork for the POC — Each airline has paperwork available on their website that needs to be signed by your doctor (for example, here is United Airlines’). A prescription from the doctor will not work and the paperwork from one airline will not work for another. You’ll obviously want to start this process way in advance because doctors work on their own time table, as we all know.

7. Medications —All medications should be packed in a carry-on with you and should be in their original prescription bottle. My advice is to buy yourself a fun new large purse as a treat, because toting around 17 prescription bottles doesn’t really say relaxing vacation.

6. Salt tablets — No, they don’t taste like margaritas with salt, but they could help you out when you need it the most. Better to be prepared for the worst and hopefully not need them, than wishing you had thrown them in with the rest of your portable pharmacy.

5. Blood pressure cuff and oximeter — You might get some odd looks taking your blood pressure on the plane, but being unconscious guarantees more odd looks.

4. Pain relief — Whatever you use regularly for pain relief should be with you. I was able to avoid dizziness for the most part and mostly even nausea, but the headache and extremity pain was off the charts!

3. Salty snacks and distractions — The fun part! Make sure you have snacks available.  Taking medications on an empty tummy is never a good idea and you never know when you’re going to need to visit that purse pharmacy. Bring an exciting book, a fun TV series or movie to watch, logic puzzles, or anything else you find helps distract you most during flares and high pain times at home.

2. Comfort — It is imperative that you dress for comfort. Also, since airplanes can be unpredictable with temperature, definitely wear layers. I hate when I think I dressed appropriately and then the weather changes drastically and as I’m seconds from losing consciousness I’m frantically stripping off as much as I can without getting arrested. I know you’ve all been there too!

1. Water, water, water, water, and water — I can’t say it enough. The average person without dysautonomia tends to dehydrate a bit in the air, so you can understand why it is so important that we hydrate up extra beforehand for several days. Most airports have a place to fill up a water bottle past security, so bring a large empty one that you can fill up and save yourself approximately $17 by avoiding buying one at the airport.

If you have these 10 duckies in a row, you should be set up for success for your air travel!

Follow this journey on Finding Smiles in the Trials.

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Accepting the Adventures I Might Never Get to Have Because of My POTS

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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.

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