I’ve always found it difficult to share my feelings
with other people. I would keep it all to myself. This, however, changed when
we received the latest diagnosis for both my daughters.
Let me start by giving you some background information about me and my family: It’s just me and my girls, and we live in Holland. We are also known as the bendy bunch, all three of us have Ehlers Danlos syndrome. And as a bonus, we all have some similar and some different additional illnesses (which we like to refer to as extra toppings). Mine are adenomyosis, dilated aorta, retinal vein occlusions, high blood pressure, and I no longer have my own teeth. Both my daughters have POTS, ME and as we know now since June this year Craniocervical Instability (CCI), Atlantoaxial instability (AAI), hindbrain herniation, and the youngest is close to brainstem compression. When they were giving out chronical illnesses, we were obviously front in line… And I’m pretty sure I forgot to write some of them down.
The shock of these new diagnoses
The latest diagnoses were a shock. We’ve been dealing with chronic illnesses for quite a while now, but this one really gave me a scare. Not one, but both my girls have a life-threatening and life-limiting disease. And as I usually do when I get stressed, I started planning and thinking about what could be done to fix this. I turned to the insurance company, but the treatment, an operation done in another country, wasn’t covered. This didn’t come as a big surprise, because we had to go to another country for the diagnosis which, as you can probably guess, was also not covered.
As I continued to process this, my thoughts
went in all different directions as my emotions went into a spin. You wouldn’t
have known that, though. On the outside I was calm and rational, and I tried to
stay that way. I had to be strong for my daughters. They needed to know that
everything would be okay, or at least, as normal as possible. When we received the
news about these diagnoses, the adrenaline took over and I went into first,
second and third gear. I’m still feeling it after two months because if I let
go of this adrenaline, I’m afraid I’ll break down. And that’s not an
Creating a Foundation and Establishing a Social Media Presence
In the last two moths following the diagnoses I started a foundation called Help Jane & Rosa battle CCI/AAI. We had to go to a notary office to make it official. As a result of the Dutch tax laws, I found that a foundation is the best way to go. Otherwise, all donations would be considered an income. Friends of mine built the website, and I deliver all of the text and images. We have also created a Facebook page, an Instagram account, a Twitter account and a YouTube channel. Unfortunately, most of the videos on our YouTube channel are in Dutch, however we try to make some English versions too.
Filming these videos was really awkward
for me. In the beginning of this article I mentioned that I’m not a great
sharer, but as you can see, I’ve stepped outside all of those boundaries I once
had. Writing about what’s going on in our lives is one thing, however filming
videos was a huge step for me. If you want a grin you should check it out. Even
with me speaking in Dutch you can see how exposed and awkward I feel. Luckily
my daughters, especially Jane, are taking care of the video aspect. This meant
I could start writing a blog for our website. All this work establishing a
social media presence is to raise more awareness and to fight for an operation
for both of my girls.
The Support of Friends, Family, and Aquiantances
I always knew I had great friends and
family (not all of my family has been supportive, but who has a perfect
family?) but what really surprised me is how supportive even my colleagues have
been. Not only have they supported me by making a donation, they have also done
so much more. One started designing T-shirts, one started developing calendars,
and Jane’s old school of is thinking about a project for raising funds. They
offer help in any way they can. I know not everyone is so lucky, and for me, receiving
all this support was a true eye opener.
I realised that not only was I bad at sharing, I was also reluctant to ask for help. I surprised a lot of people by reaching out for help, and as the time goes by, it gets easier to do so. I still blush when I do, especially when I do it face to face. But I’m managing it and it makes me proud that I do. Today during a coffee break at work, I asked the owner of the coffee bar if he could share our fundraising page and make a donation. And again, the warmth of people was overwhelming.
On the workdays I’ve been drinking my morning coffee there for over the last five years, my daughters’ illnesses have come up in some conversation. He was very concerned for their health and immediately started thinking about things he could do to help. This shows that even acquaintances are sometimes more than just people you meet now and then. The bond you have with them is sometimes stronger than you think.
All Of This Helps Me To Stay Strong
Blogging and writing about how I feel what’s going on, and where we stand is really helping me cope. Sometimes it puts things into perspective or helps me to channel my emotions in a constructive way. Today I felt sad while I was going to work. I was quiet during a meeting because my thoughts were all over the place and I felt like I could burst into tears at any moment. So, I started writing this article, thinking about all that has happened in the past two months and all that I’ve achieved. And for a chronically ill mum, with chronically ill daughters, I feel like that’s a lot.
So, I’ll keep you posted about how all
of these illnesses have an effect on us and our lives, about how the
fundraising is going and what difficulties comes with raising funds, and how
all of this mixes with work and day to day life. Sometimes it’ll be sad,
sometimes it’ll be fun and sometimes it’s just how it is. Because every day is
different and life don’t always turns out as planned. And that’s okay, as long
as we have each other we’ll get wherever we want to go, eventually. The love in
our family will always get us through the rough spots and that’s how I stay
Monique Blaauw is a mother of two daughters (20 and 19). Founder, chair(wo)man and treasurer of the Help Jane & Rosa battle CCI/AAI foundation. She has been a single mother for 18 and a half years. Works fulltime, as well as being the caregiver for both her chronically ill daughters and older mother and is chronically ill herself.
I have been a chronic illness warrior since I was 4 years old and now I’m almost 30. It’s been a long road. First, I was diagnosed with Juvenile Rheumatoid Arthritis, which then was complicated by Lyme Disease contracted in my early teens but not diagnosed until a decade later. Finally, in the last 3 years I have been diagnosed with Postural Orthostatic Tachycardia Syndrome and Ehlers Danlos Syndrome. Crossing my fingers that’s everything diagnosed!
Watching The Other Kids
Growing up I fought back a lot of bitterness and resentment as I watched the other kids, teens, and twenty-somethings living their lives. I wanted to play sports, go out dancing and drinking, get a job I loved, or at the very least not need crutches and pills to get through my day.
I spent decades shuffling from doctor to doctor and doing what they said, thinking of my body as a malevolent adversary more with each passing year.
Changing My Perspective
Three years ago I got a job at a gym during a period of remission. As I learned about fitness and got deep into the strength athlete world I began to shift how I thought of my sick person lifestyle. Surrounded by people who did their PT, stuck to their diets, and took their supplements with religious intensity, I no longer felt alone. Here was a mindset I understood and, although my results didn’t look like an athlete’s, the similarity in lifestyle began to change my perspective.
Today, in recovery from one of the worst flares of my life, I balance my time between napping and gym-going. I lift weights and use a cane. I take creatine and also NSAIDs. My diet is dictated by painful digestion and I also count my macros. For the first time in my life I see my body as, at worst, a project I’m working on and, at best, my teammate in life.
The Athlete’s Approach
The athlete’s approach to chronic illness hasn’t solved all my problems. When I’m in pain for days on end I still sink into a stupor of depression. I still hate the choices I make to miss important events with my friends or give up a job I love because of my health. I may never be able to have children or pursue a high-powered successful career. But this new mindset has given me a rope to hold onto in the dark days.
On Instagram I follow a mix of powerlifters and spoonies. I find I have connections to both groups. I write mealplans and teach yoga for athletes and coach spoonies on managing their energy levels in flares and during recovery periods. I get to learn new ways to activate my quads before a squat from a powerlifter and then scroll a bit more for a new way to use turmeric to reduce inflammation from a spoonie. It’s a beautiful meeting of the worlds of sport and sickness and I’m learning to find the balance.
It Is Possible!!
I’m signed up for my first powerlifting meet this fall. I know my numbers are going to be awful and I wont be even slightly competitive in the sport. But I’m doing it. I’m getting up there and doing the thing while still being sick, which is more than my pre-athlete mindset would have even known to dream.
I spent years trying to get better so that I could do things. Now I’m trying out doing things and getting better all at once. Doing things and being chronically ill simultaneously. It’s hard. It’s a daily battle and I slip and I fail and I cry a lot. But it is possible. And I’m doing it. And you can too.
One of the hardest things about living with chronic illness(es) is that it’s exactly that: chronic. You know it’s never going to go away, and while you may have periods of time where you feel slightly better, eventually it gets worse again. There is no break, no pause button, let alone a cure. Sometimes those things that help can be exhausting and equally painful, such as surgeries and therapies. It consumes your entire life, and it can be difficult to learn how to not let it take over your life.
Around ten years ago, my diagnoses started to roll in – although my symptoms had been coming and going for much longer. A brief summary of some of my conditions – and sadly, I will most likely forget a few – include:
Functional GI Disorders and a stomach hiatus hernia
Cervical spondylosis, protruding discs, scoliosis
Hypermobility and a grade 2 ATFL (anterior tibiofibular ligament) sprain/tear
Lately, my neuroradiologist has started to look further into all of my problems and has also asked me to look into EDS (Ehlers-Danlos Syndrome) and POTS (Postural Orthostatic Tachycardia Syndrome). His idea is that diagnosis wise, I have them, but it is my body and only I can determine how accurately these encompass my symptoms.
Someone like myself who has multiple diagnoses that require a lot of specific treatment and care is referred to as a person with ‘complex care/health needs’. This makes life a little harder, as my doctors don’t really communicate much with each other and I end up having to point out that I can’t have certain medications or do certain things because of other conditions. While I have gotten used to it, it can be difficult when I’m particularly struggling with one thing and am tempted to just go ‘oh well I’ll risk the heart attack and take these just to be in less pain’!
Dancing Through Life
When I was younger I loved performing. In fact, I still do – my dog frequently enjoys my performances of various songs from musicals I love when I have the house to myself. Up until I was sixteen I did a lot of dancing, and it dominated a lot of my time, which I loved. I like to be kept busy! I also did a lot of acting and singing and playing the piano. The ATFL sprain, which was initially thought to be a simple, minor sprain, put a stopper to that (along with the beginnings of regular palpitations and arrhythmia).
When I initially stopped dancing, I truly believed that in a couple of years time I’d get back to my normal self and start dancing again. I was also having a lot of regular back pain, which doctors always brushed off. Who doesn’t have back pain these days? When I was at drama school, the pain just wouldn’t go away and I always seemed to be unwell. Eventually, this ended with me in hospital for a week, using a Zimmer frame to slowly get around, and I quit drama school (I didn’t feel too bothered by this) and my job working on the London 2012 Olympics ceremonies.
In September 2013 I went to University. While there, although I continued to be in constant pain, had at least one million chest infections (alright, one million is a mild exaggeration), and a minor surgery, I managed to do 2 shows a year. One was a small stand-and-sing show, and one was the end of year cabaret. I absolutely loved doing those, despite the first two years I did the cabaret shows with a torn rotator cuff and sprained ankle, respectively. I’m really happy that I managed to do them, because I absolutely love musicals and they made me so happy! I also did a lot of yoga at university, and I’m so glad I did that while my body was still capable.
The Winner Takes It All
After leaving university I lost a lot of who I was, but I forced myself to keep being that person. I worked full time at a restaurant for a year, where I had been part-timing for two years while I studied. I went on tour for three months. I worked for a catering agency for a few months, taking every shift possible without regard to the fact that all humans need a day off sometimes. I forced myself into shoes that hurt my feet, to carry plates with hands that had lost all sensation and pick up crates of drinks with searing sciatica. I toured guests through famous sets with a grin on my face, spewing knowledge through the brain fog.
That year taught me so much, and although I did have a lot of fun and have so many fond memories – I wouldn’t put myself through it ever again. My body has suffered so much from the time I spent pretending I was still okay, doing jobs I was good at despite knowing that I was damaging my health. Perhaps I was in denial about how bad my health really was, hiding it under the smiles and appearance of an able body? I could carry the heavy things and walk all those stairs and work fifteen hour shifts – by sheer force.
Who benefited from all of that? Certainly not me. Sure, I earned decent money and got to go on great holidays and buy nice things. But ultimately, that didn’t help me. Having money didn’t make me less ill. It helped with purchasing things that I need, but I barely had the time to use them since I was always at work. Bubble baths were my savior. I somehow managed to go on dates, meeting for lunch or dinner before I had to go to work, applying eyeliner to distract from my tired eyes. Obviously, that fizzled out after a few months. I no longer had the energy to go for lunch or meet up or do anything except get home and sleep until I had to work again. People were always telling me ‘I’m sure you’ll feel a bit better when you’ve got some rest’ – but I neither believed them nor had the time to rest. I knew my body didn’t have a ‘get well’ mode anymore, so I didn’t stop.
Until I went to my parents for the Christmas holidays and actually had consecutive days off. I was exhausted. I knew then that something had to change. I could not continue forcing my body into these extremes, and wasting time that should be spent with family and friends desperately trying to recover from the pain by myself. I suddenly realised I was losing far, far more than I was attempting to gain.
Me and the Sky
In January 2018, I started to work at a special needs college through an agency, having wanted to do something different. I had worked with children and young adults with disabilities for around four years by then, so I was really happy to be in this setting. Although I had spent my entire life vowing never to teach, I quickly started to enjoy doing this job. I have worked in three different classes, and have been the teacher for all three at this stage – something I never thought I’d do! While the job is definitely stressful and exhausting, getting to push the boundaries of what society limits young people with learning difficulties and disabilities into is incredible.
Teaching and supporting young adults who have had barriers constantly put in place opened my eyes up about my own way of living with chronic health conditions and disabilities. When I take these students to their work placements, or see them achieve something they couldn’t do a year ago, I realise I need to have that level of advocacy and encouragement for myself. If I am telling people to use their mobility aids, or finding adaptive equipment so they can make themselves a drink or a sandwich, why have I been ignoring the fact that I ought to be doing this too? I have this knowledge and ability to teach people how to do useful life things, yet I am not doing these same things for myself.
It’s strange being able to work but not being able to do things like wash my own hair on a regular basis. I suppose I put all my energy into doing my job, and every so often I’ve got the energy to make myself dinner after work – although more often than not, I end up putting something in the oven while I shower. Usually with chips as a side, or pasta on a better day. But mostly, I am grateful for the change to, for a few hours a day, box up my own problems and focus on doing my job – because the job certainly requires a lot of my attention. Of course, I need breaks and I need the occasional time out for a migraine, or I wear slippers all day because my feet are too sore for shoes. I am aware that one day, maybe sooner than I’d like, I will not be able to do this job. This is only something I have recently accepted, and am working on being okay with. For all I know, that could be this year – or it could be twenty years from now.
Being able to work with complex care needs is (aside from a blessing and an extra load of stress) almost like being able to ‘do it all’ – and yet it’s far from it. If my colleagues are exhausted, stressed and in pain, what does that make me? Yet I’m fortunate to have good support at work – aside from having on site nurses for the students and a safe place for my medication, we have an Occupational Health nurse who helps with risk assessments and work adjustments/advice to management so that I can do my job safely and effectively. Without this, it’s unlikely I’d be doing this job.
Mama, I’m A Big Girl Now
We can all agree that twenty six is definitely an adult age – although I, along with most of my friends, still nervously laugh at the idea of being an adult. Responsibilities? Doing things? Earning money? Saving money? What on earth was wrong with just going to school for a few hours a day with your friends and then doing the fun things with some pocket money you maybe had to wash the dishes to earn? Either way, it’s an adult age, whether I like it or not.
I spend a lot of time at my parents’ house – despite the rent I pay for my own apartment (although at the time of writing I don’t have my own place thanks to a horrible experience with awful property management and a collapsed ceiling). Sometimes this is by choice because I do like to see my parents and my dog. Especially my dog! Her name is Holly and she is the most loving staffie you will ever meet. Anyway, I spend a lot of time at my parents’ house, but not necessarily by choice.
Going to my parents’ house, while a long drive from work, means there is dinner for me at the end of the day where I’d be too tired to make it myself. It means somebody can wash my hair, and pick up prescriptions when I’m too exhausted to do it myself. I spent about two months recently commuting after leaving my apartment, and it was both exhausting and a blessing. I would not do it again though.
Like most mothers, mine is very protective, especially what with me being so unwell. Every so often she tries to sway me to just stay here where I can be looked after, and I think this is something many with chronic illnesses face. I know some people do move back to their parents because they cannot handle living alone with the state of their health – and have the same push of benefits and drawbacks. Nobody really wants to still be living with their parents in their twenties, no matter how much you love them. Despite being unwell, we do have our own lives and like to do things our way. My agreement is that I’ll get help, such as hiring a cleaner and see if I can get somebody to assist me with things like washing my hair, and do online grocery shopping rather than drag myself around a store. I hate that I can’t do these things for myself, but it’s important to accept that in order to live independently I will need support with some aspects – and that’s okay.
Who Lives, Who Dies, Who Tells Your Story
I am so incredibly fortunate for my support system. From that perspective, I really lucked out. My family, friends and colleagues are understanding, supportive and excellent advocates. Whether it’s making me a cup of tea or taking me to a hospital appointment, or accepting that meeting up will involve me lying on the floor with a hot water bottle, they have never once complained or questioned things. Even at Christmas, when my family all flew in and I spent most of my time in bed because I was so unwell and couldn’t do anything on Christmas Day.
My little circle of close friends have known me for twelve years now, so they’ve really been on the whole journey with me. I still do things I love when I can, and having a wheelchair has definitely helped with that recently. It meant I could go to the beach with them, where they wanted to walk around the lanes and I knew I’d struggle. It also means when I have a low energy day, I don’t waste it on forcing myself to walk around somewhere and then paying for it big time later. It’s life-changing. But they also know I’m stubborn and will climb cliffs with them even if I have to crawl down them later, just so I’ve done what I love doing.
I only recently became more open about my health with everyone – probably only the last two years did I start to talk about it properly. Interestingly, people always end up coming to me and saying that their friend or colleague has something similar and give me a suggestion (certain massages or things like CBD oil) or say they were able to advise someone else with something I had told them. My mom even discusses me with her patients! Even though I don’t know these people personally, it gives me a further sense of extended community support. I’m not alone in this.
‘Get well soon’ may be an impossibility, and that’s not the easiest concept – no matter how often we say that it’s fine. Part of me will always miss the ‘old me’ who could do everything that I no longer can – but I also love the ‘new me’ who perseveres through every single day and discovers more things that I am capable of. Turns out, I love to crochet (except when it dislocates my fingers) and I still love to sing and play the piano when I can. I love that I have friends who enjoy meeting up for a cup of tea, or drive over an hour to my apartment for takeaway and movie night. My best friend came all the way down from Manchester and all we did was sit on my parents sofa watching many episodes of Friends and a meal out. You guys are the best friends this broken little blonde could ask for.
The online chronic illness community is also incredible – I recently posted a story about my ovarian cysts, which I knew little about as the doctor didn’t explain them, and suddenly everything was so much clearer. I felt less alone, less like I was in my own corner of impossible pain. I love being part of the Unchargeables team, sharing my journey on Instagram and getting to talk to fellow warriors every day!
Being unwell has almost consumed my life, but I will continue to resist it taking over every aspect of it. Whether it’s the occasional beach walk, dislocated fingers from making pies, or doing my job with an ice pack tied to my head – Vai is still here. Sure, I’m not getting any better – and I will have days where I feel ready to give up. I have days where all I can do is lie in bed doing nothing because I’ve lost all motivation. But the time comes around where I draw on my eyebrows, put on my big hoop earrings, and continue to fight. Sharing my story has helped me come to terms with many things and a sounding ground for new and old problems.
About The Author
Vai is Lithuanian who has lived in England since the age of 2. She has a love of theatre and performance (she danced semi-professionally in her teens) and has a degree in Drama. She discovered her passion is in teaching SEN college students and supporting young people with disabilities. Vai has been diagnosed with several different chronic conditions and thinks it’s important to share her experiences of living with chronic illnesses to support others going through the same thing.
I once spent eight months out of the year in the hospital. As the months passed and my emaciated frame sunk further into the gurney, I was denied the basic luxuries like a homecooked meal (if I could eat) or sleeping alongside the purring of my precious kitten. I struggled to make the best of it. It was during my eight-month hospital admission that I created the blog Hospital Princess, along with its affiliated YouTube channel and Instagram. What started as a way to update friends and family about my situation morphed into an outlet for me to spread awareness.
What prompted such a long hospital admission? You may ask. I’m currently 22, however my 17th birthday was celebrated with flushed cheeks, itching skin, and my heart pounding like a subwoofer in my chest. While I had been sick prior to that, I was suddenly unable to go anywhere or do anything without rebounding allergic reactions. My world as I knew it was irrevocably altered upon receiving the diagnosis of Mast Cell Activation Syndrome.
Mast cells are allergy cells within the immune system. The role of a mast cell is to protect the body against pathogens. My mast cells take the task of eliminating pathogens a little too seriously. I began experiencing life-threatening reactions triggered by all foods and food proteins in the air, perfumes, cologne, lotions, detergents, hormonal fluctuations, strong emotions, hot or cold temperatures…you name it. My family could not even cook in the house without putting me in danger. They had to convert the garage into a kitchen in order to prepare and eat their meals.
The traditional treatments for Mast Cell Activation Syndrome failed. As a result, I was hospitalized in order to begin the last resort option known as the continuous diphenhydramine infusion. Diphenhydramine is simply the fancy term for Benadryl, and I had (and still have) it infusing into my central line every second of every day in order to control the severity of my reactions. Since I had been reacting to my feeding tube formula and IV nutrition, the Benadryl pump allowed me to tolerate some nutrition at the very least.
We assume that my case of Mast Cell Activation Syndrome is secondary to the genetic connective tissue disorder Ehlers Danlos Syndrome (EDS). EDS has also caused a myriad of other maladies: Dysautonomia/POTS, Chronic Intestinal Pseudo-Obstruction, Gastroparesis, and more. My doctors and I continue to search for answers because if we can pinpoint the root cause or contributing factors and treat them, perhaps my mast cells will improve.
The Reality of My Stay in Hospital
Consider the various stressors of the hospital. I am sure you can recall the physical and emotional burdens whenever you or a loved one is admitted for medical care. You know, the restlessness, the incessant beeping of IV pumps, and the early morning awakenings just to repeat the same story you already told umpteen times before. Patients and families contend with all of the above while healing from illness—fighting to get better, for the chance to improve, to overcome, to love, to live. This was my life for nearly a year.
Being chronically ill, I spent my leisure hours in the confines of my
four-bedroom walls. I was always a bit stir crazy, craving a change of scenery.
But when I was finally discharged after a gruesome eight months, I celebrated
the victory of returning to the place I once complained about so often. The
nurses cheered as I exited the oncology ward.
Unfortunately, I couldn’t leave the hospital behind in the same way that the majority of hospital patients do. I left garbed in a filtered mask with a nasal cannula hidden underneath. On the handles of my custom wheelchair hung a backpack containing four pumps that infused medications through the central line in my chest, and formula into the tube on my abdomen that leads directly into my small intestine. At that moment, I found that my true self became lost within the tubes and lines protruding from every orifice of my body.
However, I knew that I had the power to eventually find myself again.
The Judgement I Receive from Healthy Outsiders
Now, I can’t step a foot outside my house without receiving the questioning looks of pity. People undoubtedly feel sorry for me. They see my wheelchair, the tubes, the miscellaneous lines protruding from every orifice of my body, and their eyes drop in sullen despair. I know what they are thinking because their gaze reveals their innermost thoughts. Instead of seeing a successful young woman with ceaseless opportunities ahead of her, they assume the opposite—that my disability renders me an invalid, incapable of participating in what life has to offer. To them, a life with limitations is not worth living. On the rare chance that conversation does ensue, they are surprised to learn I am in college and soon-to-be married; as if someone with health challenges cannot accrue accomplishments in school, careers, and relationships.
The stigma of disability constructs this pattern of erroneous misconceptions. Interactions with total strangers provoke the insecurities of the girl I was when I was leaving the hospital four years ago—the one who struggled to recognize she was more than her illness. As those feelings resurface, I am reduced to an object made up of medical equipment, devoid of emotions, in which they direct their sympathy. It never crosses their mind that I am a real human being.
My goal as a Chronic Illness Advocate is to prove that having a chronic illness does not diminish a person. Depending on continuous infusions, a feeding tube, and various other medical interventions for survival, is not easy, yet it is possible to live a fulfilling life despite chronic illness—even when your daily routine starts to resemble a never-ending hospital admission.
About The Author
Cheyanne is a 22-year old college student hoping to pursue a career as a counselor in chronic and terminal illness. In her spare time, she runs a small Etsy business and writes about psychology and neuroscience for CogniFit. Although Ehlers Danlos Syndrome and its comorbid diagnoses, Mast Cell Disease, Dysautonomia, and Chronic Intestinal Pseudo-Obstruction present its challenges, she strives to prove that life with chronic illness is still worth living through her blog and its affiliated YouTube channel at hospitalprincess.com.
The intersection between parent and caregiver crosses many times, much like a tangled ball of yarn. As mothers, we know instinctively that care-giving is a part of our responsibilities. From the moment that your baby is pulled from your womb and put to your breast to nurse, we realize our needs no longer come first. However, none of that was preparation for the job of being a full-time, chronic illness caregiver.
As if parenting a tween and teen is not enough of a challenge!
It has been a rough road over the last eight years since my daughter’s mononucleosis diagnosis became a chronic illness journey. As my baby girl prepares to turn eighteen years old, our roles are shifting again. I’m simultaneously looking back into the past at lessons learned, and into the hope of the future. As I do this, there are 7 things I want my daughter to know:
1. I Can’t Help but Blame Myself
A mother’s job is to protect her child. My goal was to keep you safe, healthy and happy. In many ways, I feel I was a failure in all three. The truth about what causes POTS is a mystery to even those that specialize in it. That, however, does not stop the barrage of thoughts that swirl around my head. Was it bad DNA? Maybe it was because you were not breastfed longer? Or was it the food I gave you? Was it that kind of sketchy, dirty movie theater we visited? Or maybe that one babysitter was sick? Could it be because we moved around too much in your childhood? Was it because I was not paying enough attention to while I pursued a Master’s Degree?
Along the way, I have asked myself these questions and a million others. as I tried to figure out what mistakes I could have made, in order to warn others. Nobody really wants to be a chronic illness caregiver. I see preventing others from enduring that fate as a worthy goal.
2. I Would Take The Illness From You If I Could
We hear a lot about parents begging their personal god to give them their child’s illness. From my perspective, this is not some act of sacrifice. It is purely a selfish desire to want to end your child’s suffering. There is nothing worse as a parent than to see your child hurting. I felt her pain in my bones and in my soul. Anyone that has been a parent knows that this is true. That being said, it has been my privilege to be your parent. If there is such a thing as divine purpose, mine was to help you survive this affliction. Being your chronic illness caregiver was the most important job that nobody every applied to do.
3. There Was Never One Second I Wished I Was Not Your Mom
When that old pediatrician counseled us the only option was to keep you comfortable until… (he trailed off before finishing the sentence), every fiber of my being screamed “no way, not my daughter.” He was wrong about the chronic fatigue syndrome diagnosis, for the record. When the same doctor called me to tell me that I should not let your illness interfere with my marriage, I cried. That was when it became clear he was not going to be the doctor to help you. I shudder to think of a lesser version of me being your mom. Another mom might have accepted his answer. Instead, your mom cut the average six year diagnosis delay in half.
4. I Never Believed You Would Not Get Better
Not every piece of advise we were given was great. Some medical providers hurt more than they helped, and we realize this now. But not trying was never really an option. We have heard everything doctors say when they do not know what to do.
The image of one-week-old you laying on a baby blanket on the floor next to her mother while she took a psychology final was fuel all these years. You were unreasonably calm and happy for a newborn. It was as if that infant, you, were an old soul that knew we were on the same team. Holding on to that vivid image has been a reminder that your purpose on this planet is greater than any difficulty you faced. The triumphs were worth it.
I still do not believe that there is no hope for you. Maybe in some ways, it would have been easier to accept this faulty idea. Easier for you, for me, and the whole family. But easy has never been the way our family worked. Overcoming obstacles was a way of life while growing up for your dad and I. In some ways it defined our family. How else would two poor kids put themselves through college while working and raising a family? Why would this be any different? It was this belief that had us try every kind of treatment or therapy available.
5. I Will Never Give Up
Whether it is essential oils, prayer, diet and nutrition, exercise, voodoo, celery juice, or a magic pill they have not yet created, I have a solid belief that a cure exists. This belief of mine is stronger than any doubt. Yes, the experts say Dysautonomia has no cure. They used to say that about a lot of diseases and illnesses, though. Just because the world has not figured out the answers yet does not mean these answers do not exist. Facts about POTS are limited. Faith, on the other hand, is unlimited.
So, late night research will continue to replace my worry. Listening to Podcasts about alternative wellness will be my go-to recreational activity. Me reading blogs like The Unchargeables more common these days than the old favorites like fictional novels and gossip magazines. Advocating for you and others is a purpose filled mission. It is all part of the job of a chronic illness caregiver. Thank you for humoring those articles sent at three am. Thanks for trying the supplements, prescriptions and every other crazy idea we have tried. My hope is that you never give up either.
6. I Am Only Human
When I get tired or cranky or completely lose my $&*! it is not you I am angry with. Never was it you. It is the illness, the doctors, the medical system as a whole. Yes, it is with every intention that we live with a glass half full mentality. Positive vibes are the only choice we can conscientiously make as a chronic illness caregiver. But there are those days that my own health wears down, when talking to an insurance provider, or paying a doctor’s bill for something that did not really help get the better of me. It becomes necessary to charge my own batteries.
Keen awareness that your mom is all you have some days is not always enough to overpower the very human body and mind. So, hang in there while I put on my own oxygen mask. It is for your own protection that self-care has to come first sometimes.
7. Letting Go Is Harder Than Holding On
Now that my daughter is about to enter the age of legal adulthood, we are finding ourselves in unfamiliar territory. The realization that it is time for changes has set in firmly. In many ways we are ready; in others, not so much. The legal stuff, like the responsibility to provide health care coverage, is easy. The technical stuff like obtaining a driver’s license to get places she was normally chauffeured to is something actively being addressed. The physical stuff like coping with meeting the requirements of self-care during a flare (or when too fatigued to make it down the stairs) is not as clear cut. Taking steps to address the financial stuff like finding a job is a daily effort.
Out of all of it, the emotional stuff is the hardest. Saying “no” has always been difficult to do. Even before chronic illness was a part of our lives, I was the mom that tended to do too much for her children. Finding the balance between providing support and encouraging independence is more complicated for the parent of a child with a chronic health condition than it is for those with healthy adolescents.
There are some things that I know are certain. Katie’s resilience and strength have been proven time and time again. Her spirit is strong. She is wise beyond her years. She has strong goals. There is no doubt she will live her best life, one step at a time.
About the Author
Tami Madden has been a regular volunteer with The Unchargeables community while wearing many different hats. She is a Caregiver for a Chargie with Dysautonomia. You can find her on Instagram sharing her life as a reader, writer, teacher, baker, chicken soup maker, and fighter for all things healthier, stronger, kinder and better than yesterday at this link here.
Six months ago, I was diagnosed with small fiber neuropathy and autonomic neuropathy, which is a form of dysautonomia. I had been searching for a diagnosis for my unexplained weakness and fatigue for a few years, but all of my testing was coming back normal. Every doctor I saw diagnosed me with different conditions: depression, fibromyalgia, chronic fatigue syndrome, anxiety, and PTSD. I never felt like these were the cause of my symptoms, and after months of searching, I was referred to an amazing neurologist who put the pieces together and found the true cause.
In the human body, the autonomic nerves control things that we don’t normally need to think about like digestion, blood pressure, and heart rate. Autonomic neuropathy causes all of these nerves to malfunction. Though I have found many things that help, I still experience symptoms such as dizziness, nausea, fatigue, and weakness on a daily basis. I am working hard to improve my symptoms and quality-of-life, but I know that the chances are low of my nerves regenerating.
Because of this, I have learned to manage my symptoms with lifestyle changes as well as medications. To me, these are normal things that I do every day. But to other people, these things might seem a little bit weird. I hope that by sharing these 10 things, I can help bring a better understanding to the chargies living with this condition.
Ten things that I do because I have Dysautonomia:
Fidget Constantly Autonomic neuropathy causes blood to pool in my arms and legs, so I try to move them a lot. I fidget while sitting down, standing in line, and even in bed. This keeps the blood moving around and prevents my arms and legs from becoming painful and swollen.
Drink Lots of Water Autonomic neuropathy causes me to have low blood volume, so to combat this, I drink water all the time. I always have a water bottle with me, gallons of water in my car, and electrolyte tablets in my purse.
Wear Compression Socks Because autonomic neuropathy causes blood pooling in my legs, I wear compression socks anytime I am moving around to help squeeze the blood back to my brain. They keep me from feeling dizzy and lightheaded, and they help my pain a little bit as well. Most compression socks are not the most stylish, and most of my outfits don’t look the greatest with knee-high socks. However, I put up with this since compression socks make such a difference for me.
Make Lots of Bathroom Trips Autonomic neuropathy causes my G.I. system to malfunction in different ways everyday. I get nauseous frequently, and a lot of times, food doesn’t sit well. I also have problems completely emptying my bladder, so I tend to make lots of bathroom trips in order to avoid being uncomfortable with no bathroom available.
Squat or Sit on the Floor Sometimes on bad days, I just need to sit down. This is not always convenient, like when I am standing in line at the grocery store, but it’s better to be sitting and embarrassed than unconscious. If I am shopping with friends and they stop to look at something, sometimes I will find a seat on the floor next to them. Usually, though, I just use my wheelchair so that I always have somewhere to sit and stay safe.
Avoid the Heat As much as I don’t like the cold, the heat is so much worse for my symptoms. Autonomic neuropathy can cause heat intolerance, which makes me nauseous, lightheaded, and extremely tired when I am overheated. Because my sweat glands are affected as well, I can get overheated in places that most people would find a comfortable temperature. I always carry cooling towels in my purse, but sometimes it is just too hot for me to stay.
Elevate my Legs Because the blood pools in my legs, I like to rest with my legs elevated higher than the rest of my body. This can help to resolve symptoms, and it improves my ability to rest. If I am extremely symptomatic, sometimes I will lay on the floor with my legs up the wall.
Change Positions Slowly If I move too quickly, my body doesn’t have enough time to move the blood from my legs to my brain. This is especially important when I wake up in the morning or from a nap. I spend a few minutes sitting upright, a few minutes with my legs dangling off the bed, and a few minutes standing up before I start my day. This gives everything time to get into the right place and avoid a morning flare.
Pick Things Up with My Feet Bending over to pick things up causes a lot of dizziness, so I find creative ways to avoid it. At home, I usually am barefoot and pick things up with my toes, but in public, I try to ask for help or squat down to get things. Soon, my service dog in training will be able to pick things up for me so that I no longer need assistance.
Use Grocery Delivery Autonomic neuropathy causes my heart rate to be elevated all throughout the day. This makes normal things like washing the dishes, folding clothes, and going to school a workout for my heart. If I can conserve energy by delegating tasks, I will, and getting groceries is one of my least favorite tasks. It always drains my energy, and I am always exhausted for a few days afterwards. Getting the groceries delivered means that I can spend my energy doing things that I find enjoyable instead.
Some of these things may seem a little weird or unnatural, but for those with autonomic neuropathy and other forms of dysautonomia, they are essential. They are all small things, but when combined, they make a huge difference in symptom control and quality of life.
Blythe Neer is a Chargie living well with Celiac Disease, Ehlers Danlos Syndrome, and Small Fiber and Autonomic Neuropathies. She spends most of her time at home blogging, taking photos, training her future service dog, and making unique spoon gifts with polymer clay for her Etsy shop. You can find her at sustainablespoonie.com or on Instagram at instagram.com/sustainablespoonie.
So you have decided to get to know someone new. Whether it’s through a dating website, a mutual friend, or something of the like, it often raises the question of how soon is too soon to tell the other person that you have a chronic illness. Tell them too soon and they might back away before you can get to know them, but if you tell them too late they might get upset with you for not disclosing the information sooner. So when is the best time to tell someone about your illness?
One of the things that makes this topic so tough to discuss with new people is the fact that everyone is different, and therefore there is no perfect formula that will work every time when opening up initially. Lord knows how many times I’ve sat in the car before a first date and wondered whether or not I should use my crutches or walker to get into the restaurant. It’s not every day a 23-year-old shows up to a first date using a mobility aid. I’ve been on dates where I’ve shown up using my crutches, and next thing I know the guy is telling me that he doesn’t see a future with me because he doesn’t want to be a one income family. On a first date! But there are times where I’ve pretended to be normal and healthy, and then on the fourth or fifth date talked about my disabilities and completely overwhelmed the other person, which effectively cuts them off or closes them up. It took a lot of trial and error for me to figure out what works best in my situation.
Online Dating Tips
When it comes to my online dating profile, I disclose right off the bat that I do struggle with physical disabilities and mental health issues. I don’t go into any detail further than that and usually let them make the first move on approaching me about it. People who have a bigger concern about being with someone who has a physical disability will usually ask questions within the first few messages, whereas the people who don’t seem as concerned about it will wait until much later to bring it up. When people do come to me asking questions, I do my best to answer their questions directly and as efficiently as possible (without giving so much information that it overwhelms them). If someone asks me about how much activity I’m able to do during the day, I’m usually honest about the fact that there are some days that I can do more than others. I like to let them know that I do have a gym membership and enjoy being active when I can, but if I’m too active on any given day, then I might be out of commission for the next few days to recover. I like to tell them that I do love going on walks or going to events like Comic-Con or the Renaissance Faire. I also tell them that there are some days I can barely get out of bed and have to use my walker just to get to and from the bathroom. I do my best to emphasize the fact that I am an independent person who is not looking for a caretaker that doubles as a girlfriend or boyfriend.
When I’m meeting new friends and don’t have the luxury of being able to state on an online profile that I have disabilities, I usually end up being very upfront about my disabilities. A quote that I have taken to heart when it comes to this was said by the late, great Dr. Seuss: “Be who you are and say what you feel, because those who mind don’t matter, and those who matter don’t mind.” I have been through a lot of ups and downs in my life, and I have learned that this saying really is true. The people who have stuck by me when I’ve been sick and struggling are the people who didn’t mind in the first place that I had disabilities. And the people who had issues with me being disabled when we first started out getting to know each other ended up not being there for me when I needed them most. As discouraging as it is to see these red flags of unsupportiveness from people when you get to know them, it’s better to know early on than to put the energy into the relationship and end up getting hurt. At the end of the day, it’s important that you stay true to yourself and do what you are comfortable with. Healthy relationships rarely grow from crossed boundaries.
Whether we like it or not, are chronic illnesses or a part of who we are. There’s no way to ignore them or hide them forever. It’s important that you take your time easing people into the reality of your life if they have not had experiences with people who have chronic illnesses before. The life that we are forced to leave because of our chronic illnesses is very overwhelming, especially for new people. It’s often upsetting to hear just how rough we have it. But slowly, piece by piece, strangers can turn into friends when they realize that your chronic illness is just a part of who you are and that you are a fabulous person no matter what. You’re not defined by your illnesses or your disabilities, and the people who truly matter will see that shine through.
Written by: Ren Kaspar. She is a spoonie struggling with POTS, hEDS, and gastroparesis, among others. She writes her own blog (ungluingstigma.com) and is an outspoken activist on Instagram (@ungluing_stigma). When she’s not managing her illnesses full time, you can find her volunteering with Crisis Text Line or working at build-a-bear.
Dysautonomia is difficult to pronounce and even more difficult to live with. Before I can share how dysautonomia has affected my life I should explain what it is. Dysautonomia is an umbrella term that covers any condition that is caused by a malfunctioning autonomic nervous system (ANS). There is no cure for dysautonomia. [If the dysautonomia is caused by a disease, curing the disease may return the autonomic nervous system to normal function but this is not always the case.] The ANS controls the bodily functions that are performed unconsciously. To complicate things further, the ANS comprises both the sympathetic nervous system (SNS), which regulates bodily functions related to the “fight or flight” response. and the parasympathetic nervous system (PNS), which regulates the functions when the body is in the “rest and digest” state. Both of these components of the ANS are constantly active at low levels to maintain an equilibrium within the body.
There are more than 15 types of dysautonomia affecting around 70 million people worldwide. The two most common types of dysautonomia are Neurocardiogenic Syncope (NCS) and Postural Orthostatic Tachycardia Syndrome (POTS).
NCS, which affects tens of millions of people worldwide, disrupts functions performed by the ANS that counteract blood pooling (which is caused by gravity pulling blood downward). With NCS these processes do not function correctly, resulting in temporary loss of circulation to the brain which causes fainting, also known a syncope. As with most types of dysautonomia, NCS has a spectrum of severity. Many people are able to manage the symptoms on their own by avoiding known triggers such as dehydration, stress, and excessive heat.
POTS affects between 1 and 3 million people in the United States alone, 80% of whom are female. POTS causes greatly increased heart rate when a person moves from lying down to sitting, or sitting to standing. The symptoms are even more severe when a person goes directly from lying down to standing. Most people with POTS (many of whom refer to themselves as “potsies”) know that they should under no circumstances go quickly from being horizontal to being vertical. Doing so is so problematic that one of the more common tests used to diagnose POTS is the tilt table test.
People with POTS often also experience one or more common symptoms, including but not limited to:
Tachycardia (rapid heart rate)
Shortness of breath
Extreme sensitivity to temperatures
One of the reasons that there are so many symptoms of POTS is because it is very often co-morbid with other disorders. Some researchers believe that POTS is a genetic condition while others think that it is has autoimmune cause. Many people affected with POTS have an autoimmune disease; those who do not may have high levels of auto immune markers.
Not all cases of POTS can be linked with autoimmune problems, however. It is thought that POTS can also be caused by a variety of conditions and incidents including trauma, surgery, pregnancy, a variety of infections, chemotherapy, heavy metal poisoning, toxicity resulting from alcoholism, and diabetes, to name a few. Because of the vast number of potential causes for POTS, the variety of symptoms, and a general lack of awareness (even within the medical community) the average diagnostic delay for a patient with POTS is 5 years and 11 months. More than a quarter of these patients have to see more than 10 doctors about their symptoms before being diagnosed with POTS.
Now seems like a good time to remind you that POTS is the second most common type of dysautonomia and the average amount of time it takes to get a diagnosis is still over half a decade.
Okay, now you know what the autonomic nervous system controls and therefore what functions dysautonomia has the potential to disrupt. I have talked to a lot of people with different types of dysautonomia and no two people have the same experiences. Mine has been a pretty wild ride.
While I have had symptoms of dysautonomia since I was about 15, very nearly half of my life, I did not learn about dysautonomia until June of 2018. Most of my symptoms never presented severely enough for me to seek medical attention; some I didn’t even know were unusual experiences. I wrote off many problems as me being clumsy or lazy or weak or as a consequence of being overweight. I also have a diagnosed anxiety disorder so the more severe symptoms I was experiencing I attributed to that. Many people with dysautonomia are misdiagnosed with an anxiety disorder because many of the symptoms can look like a panic attack. I was not misdiagnosed–I absolutely have an anxiety disorder. I just also happen to have dysautonomia.
My therapist, while she is admittedly not qualified to diagnose dysautonomia, was the first person to suggest that I should probably talk to my general practitioner about the possibility that I had it. I had been telling her how frustrating being startled is because adrenaline rushes are so painful, like lightning shooting through the top of my head and branching down my spine and sometimes arms and legs depending on the severity of what scared me. I was 29 years old when I learned that adrenaline is not supposed to hurt. She opened her laptop and started to ask if I experienced certain symptoms. At some point I had experienced almost all of them. It was like winning bingo in purgatory. She told me that I should do some research, and maybe talk to my dad (who happens to be a non-clinical neurologist), and talk to my doctor.
That presented a new problem. I hate going to doctors. I didn’t even have a family doctor. I spent over an hour calling offices before I found a doctor who had an available appointment only 4 weeks out instead of the 4 months I had been told by other offices. My appointment was set for the second to last Friday in July. At that point I was mostly going so that my therapist wouldn’t nag me about it. It was a very hot and very stressful summer and I’ll never know for sure what caused my first big symptom flare up, but I count myself lucky to be able to tell you all about it.
On July 17th I was driving home and Scout, my psychiatric service dog in training started to whine. I assumed it was because we had been out six hours longer than normal, it had been a very stressful day, and it was really really hot out. We had just left the grocery store and were on the interstate on the way home. I assumed she was whining because she was tired. I told her that we were almost home. She started barking in her recently perfected Big Girl Bark directly next to my right ear. (Scout is a Leonberger, and even at only 8 months was pushing 100 pounds, so that Big Girl Bark was big.)
I feared there was about to be a potty emergency and pulled into a rest stop a couple of minutes later. She barked until the car was stopped. Before I could get out of the car my vision became dark and blurry, I was lightheaded and dizzy, and then I fainted. I came to with her licking my face. Based off of what was on the radio I couldn’t have been unconscious for very long, but being unconscious for even a second when driving at nearly 80mph can cause a life threatening situation. I had never experienced syncope before and, while tired and annoyed, I felt otherwise fine right up until the few seconds before I fainted. I have no doubt that Scout saved us both that day. She is now learning a more refined syncope alert along with her other tasks.
That day kicked off a really rough time for me. I saw my new doctor the next week and luckily she not only knew about POTS but had a loved one who with it. Because of that it turned out that the letters I brought from other medical professionals backing up my opinion weren’t needed, but we had a nice laugh about it. We were operating under the suspicion that my dysautonomia was POTS until my heart rate started to “do the thing” even if I had not moved in hours. I had a day when my heart rate bounced back and forth from the mid 50s to the mid 140s ever minute or two for about 16 hours. It was a terrible experience. I do not recommend it.
I still can’t stand for more than 15 or 20 minutes without getting dizzy. I’ve had to learn how to work around needing to lean over because that is an almost guaranteed way to mess up, well, just about everything. I’ve missed multiple weddings and other events I’d planned on enjoying. I now only make tentative plans with the exception of doctor’s appointments because I can never guess how I’m going to feel. I know that I have to stay hydrated and avoid getting overheated, but even when I do everything I’m supposed to do sometimes my ANS just won’t cooperate. It’s extremely frustrating.
Like all people with invisible disabilities, I’ve run into some very unkind people. And just like anyone who isn’t blind but has a service dog I’ve run into a lot of very nosy people. Unfortunately sometimes I run into people who are members of both groups. They want to know why I have a service dog and they’re jerks about it. If you have dysautonomia and don’t have the spoons to explain to an inquisitive and rude stranger what that means take a page from my book: I tell them that “sometimes my brain forgets how to drive my meat.” It usually creeps them out just enough to get them to stop asking questions and the levity makes me feel better.
About the Author
Sabrina lives in the woods with her husband, Matthew, their good pal Atlas, three dogs, three cats, a grumpy tegu lizard, 4 ducks, and occasionally a shower full of foster kittens. She is currently unable to hold a traditional job but is working on the
art for multiple decks of cards and is in the beginning stages of writing and illustrating a series of children’s books. On the days that she can stand for more than 15 minutes she helps with the homestead work.
10 Facts About Postural Orthostatic Tachycardia Syndrome (POTS) for Dysautonomia Awareness Month
October is Dysautonomia Awareness Month in the United States and around the world. Information for this article was found on the Dysautonomia International website. They are the leading advocacy group for this condition. Dysautonomia is an umbrella term that encompasses many different diseases, conditions and syndromes, including POTS.
How Common is POTS?
Imagine if everyone in a city the size of Chicago suddenly got sick. That’s how many people have POTS in the United States. Despite the prevalence of POTS it receives a fraction of the funding for research as other diseases with similar occurrence rates such as multiple sclerosis. Current per patient funding for research is about ten cents per person annually.
POTS is a predominately female problem
Like many other predominately female conditions, funding for medical research is low. Investment in treatment or cures is largely the result of an awareness army.
POTS impacts every aspect of daily life
Many POTS patients require wheelchairs or other assistance devices in order to travel, work, or attend school. But they don’t always need them. This can create a lot of confusion for able-bodied friends. Chronic fatigue, digestive issues, headaches, dizziness upon standing and chest pain can all impact a Chargie with a dysautonomia’s ability to succeed in life.
Awareness campaigns have helped decrease the average diagnosis time from six years to four years. This time is still too long. During the time that patients wait, there are expensive and invasive tests, doubts, experimental and holistic options, and psychological conditions to handle. At least half of patients surveyed were told at some point that their symptoms were psychosomatic. Incorrect therapies can prove dangerous and many patients get worse during the delay.
POTS may have a genetic component
Heredity seems to be a factor in some, but not all patients with POTS. It’s possible a genetic predisposition combined with another factor such as infection or trauma creates the environment for dysfunction of the autonomic nervous system to occur.
Limited Treatment Options
There are pharmaceuticals for symptom management and some relatively new drugs being used off label now. Mayo Clinic and others recommend an integrative approach. Natural approaches and lifestyle management can be very effective in treating POTS. Exercise and a high salt diet are widely regarded as the baseline for beginning recovery. For one patient, diagnosed at 13 after three years of searching for answers, it has taken four years of physical therapy to rebuild her stamina. Even after two intensive rehab programs she feels she has reached between 25% and 50% of quality of life compared to her peers and her individual goals.
The Mayo Clinic is the only organization that has evidence based research results of follow up prognosis. The results are based only on surveys that were returned to the hospital after patients attended a recovery program. More research is needed to get accurate prognosis statistics so patients and their families can plan ahead.
Learn more about POTS from Dysautonomia International. If you think you or a family member may have POTS their website has resources you can print to take to your health care providers. You can find Dysautonomia Awareness gear in the shop here.
T.J. is a contributing author for The Unchargeables, manages The Unchargeables Twitter feed and is the newly appointed administrator for the Caregivers Support Group. She describes herself as a Reader, Writer, Baker, Teacher, Chicken Soup Maker, and Fighter for all Things Healthier, Stronger, Kinder, and Better than Yesterday. She is the mother of Katie Madden, a POTSIE.
Did you know that regular exercise can actually improve the symptoms and quality of life for POTS patients more effectively than a beta blocker? While doctors often reach for the prescription pad to cure our healthcare issues, diet and exercise are often key players in health issues, and dysautonomia is no exception. For many, a combination of medications, along with changes in diet and exercise is the answer to achieving their best health with the many conditions that fall under the dysautonomia umbrella. Exercise is an integral part of that equation. I didn’t see significant improvement in my own Postural Orthostatic Tachycardia Syndrome (POTS) until I began to incorporate exercise into my daily routine.
The Supporting Evidence
When beta blockers were compared to exercise over a three month trial, it was found that while both decreased heart rate, the medication did little to make patients feel any better, while exercise impacted the overall quality of life for patients. “The exercise worked better than the medicine to restore upright blood circulation, improve kidney function and quality of life, all problems in POTS, the researchers say (Exercise).”
Of course one doesn’t just start doing jumping jacks or running track with dysautonomia. The first thing you want to do is speak with your doctor and get cleared for exercise. Your doctor can also help you choose a healthy target heart rate and ranges for cardio exercise. It may also be a good idea to work with a physical therapist to help you decide what level of exercise to begin with and what’s safest for you. Dysautonomia International suggests that some patients may even benefit from a cardiac rehabilitation program.
Modifying Exercise for Dysautonomia
How much energy we expend can be just as important as the type of exercise. In fact, exercise intolerance in dysautonomia is very real and many of its accompanying primary or comorbid conditions like MCAS or ME/CFS. Exercise intolerance means that an increase in activity can cause an increase in symptoms for an illness, most notably fatigue levels. Where the confusion comes in with this concept is that people assume that any exercise becomes problematic for someone with these conditions and that’s simply not true. What it does mean is that we have a lower threshold of tolerance than healthy people and we need to modify how we exercise.
For people with dysautonomia, this means avoiding exercise in an upright posture along with monitoring how much energy we expend. The first part of this equation is pretty easy to understand; we want to partake in exercise that can be done from a sitting or laying down position, such as recumbent biking, rowing, or swimming for our cardio. If we lift, we want to do so in a sitting position. Things like dance classes and barre should probably be eschewed for spin class, pilates, and yoga, while still avoiding certain positions. It’s all about being safe and not giving our intolerance to standing the opportunity to rear its ugly head.
Pacing for exercise intolerance is a bit trickier. No one can tell you where that wall is for you and the best thing is not to find it, but to strenuously avoid finding it, as it can take several days to recover from triggering your exercise intolerance. We all know what it is, because it’s that feeling that usually makes us say “Oh no! I think I overdid it!” as we feel the state of our health crumble like a cheap facade. But how to avoid it?
8 Tips for Pacing Yourself
Forget the no pain no gain bull. That’s not for spoonies.
Count exercise in your spoons. Your exercise is part of your health care and necessary to staying/becoming healthier. It should come first, but if you have something else to do in a day that’s going to take more spoons than you have, exchange it with your exercise to avoid triggering your intolerance.
Start out at the appropriate level of exercise. Avoid straining your muscles. You DO NOT need to strain your muscles to build them.
Do an appropriate number of reps. Even if it’s only 1 set of 10 or 3 sets of 5, you’re still getting the work in. Good for you!
If you wake up already fatigued, hydrate and supplement with salt. Take a break or decrease the number of reps if rehydration doesn’t help.
Keep in mind that upright exercise will always cost you more spoons, so if you exchange your 3 mile recumbent bike ride for a trip to a park to walk 2 miles, the walk to the park is going to cost more spoons.
Keep a journal of your exercise to ensure you’re gradually increasing your exercise and offering yourself enough challenge without regularly triggering your exercise intolerance.
Try not to take breaks longer than 1-2 days. Decrease workouts rather than cut them completely to avoid losing ground.
Since I was bedridden when I started out, I had to start out very slowly, using simple exercises that can be done in bed. I wasn’t just fighting exercise intolerance, I was fighting serious muscle deconditioning, which can contribute to the severity of dysautonomia and the level of exercise intolerance you may experience. The last thing you want to do when starting a new exercise program is trigger exercise intolerance. You want to start out gently, doing exercises you’re confident you can do at a number you’re sure won’t make you sore or wear you out.
Find a Physicial Therapist to Help You
While I did this rehabilitation alone, it is probably better to go through an approved therapy program that’s arranged by the doctor caring for your dysautonomia. You really need someone who can direct your practice and ensure you’re not only performing exercise that’s safe for your condition(s), but also appropriate for your starting level of fitness to avoid any injury. While I’ve always been a bit of a do-it-yourselfer, I say this because ultimately I ended up in therapy later, attempting to correct all the weakness that remained because I was either not doing exercise to target those specific areas or I was doing them incorrectly and hurt myself. I could have saved myself months of pain and hassle had I just gone and requested the therapy in the first place.
It may be frustrating to start out so slow and you may be bored, but don’t worry. You’ll be amazed with how quickly your stamina increases and soon you’ll be able to take on more. The great thing about working within our own limitations is that those limitations become less constraining quite quickly. Before you know it, 10 minutes will become 15, 15 will become 20 and before you know it, you’ll be devoting a whole hour to ninety minutes a day exercising. Even if you can only last 5 minutes to start, you’re getting somewhere. But you can only get somewhere if you keep going.
No matter what level you’re starting at, it may be possible to work your way up to unmodified, upright exercise. This can be largely dependent on comorbid factors, but dysautonomia is not an incurable condition for everyone and while well controlled, some of us with it can lead almost normal lives, which includes normal exercise. For example, by the end of the previously mentioned study on exercise versus beta blockers, 10 participants could no longer be diagnosed with POTS at the end of the three month trial (Exercise).
Every Patient is Different
As someone with POTS as a secondary diagnosis to EDS and MCAS, I may always rely largely on my recumbent stationary bike for my cardio. However, I’m also able to incorporate occasional upright exercise as well, such as walking at parks, stair climbing, and light aerobic exercise. Not too shabby for a former occasional wheelchair user. Actually, it’s been over a year since I’ve pulled my wheelchair out for any reason, even attending museums, festivals, concerts, sporting events, malls and parks with nothing but my own two legs to carry me.
Like many, I use a combination of meds, exercise and diet to manage my dysautonomia. I enjoy fewer symptoms, greater stability of health and more freedom overall because I’m no longer worried about passing out in public every time I leave the house. Finally, exercise is a great way to feel more in control of my illnesses and in touch with my own body again.
About the Author:
Capricious Lestrange is a former educator who loves to write. When brain fog prevented her from writing the fiction and poetry she loves, she turned to blogging and now writes about her life, her health conditions and what she does to keep them in check. She enjoys spending time with her loving husband, her adorable Russian Blue kitty and dabbling in the visual arts when she doesn’t have her nose stuck in a book. Capricious has EDS, MCAS, POTS, CPTSD, and gastroparesis.