What Helps Me to Stay Strong (Through My Family’s Chronic Illness Journey)

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.

The stress of receiving new, life threatening diagnoses

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 option.

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.

How blogging has helped me cope with my family's chronic illness journey

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.

The support of my friends, family, and acquaintances is very important

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 strong.

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.

September 23, 2019September 6, 2019

Working In A Gym Helped Me Changed My Perspective Amanda’s Spoonie Story

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.

There 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 meal plans 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.

August 24, 2019August 24, 2019

The Impossibility of ‘Get Well Soon’ – Vaive’s Spoonie Story

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.

Everything Changes

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:

Fibromyalgia
Bronchiectasis
Chronic migraines
Long QT Syndrome, SVT (Supraventricular Tachycardia), Incomplete RBBB (Right Bundle Branch Block)
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.

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,

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.

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

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.

July 20, 2019July 1, 2019

What I Wish the Public Knew About My Chronic Illness

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.

My Diagnosis

What prompted such a long hospital admission? You may ask. I’m currently 22, however my 17^th 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.

What I Wish the Public Knew About My Mast Cell Activation Treatment

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.

What I Wish the Public Knew About the Reality of My Stay in Hospital

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.

Picture of the Author with Her Treatment Tubes

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.

April 20, 2019May 15, 2019

What People with Chronic Illness Wish Our Friends and Family Understood

Finding My Confidence To Speak Up As A Child With Chronic Illness

Living with a chronic illness of any kind can truly impact all aspects of one’s life and make many things difficult. Poor health can put a strain on everything from your job and work life, as well as the relationships that you hold most dear. Over the years I’ve found that one of the hardest parts of living with a chronic condition is keeping your relationships healthy. While this may seem odd to those who haven’t walked this path, sadly, it’s very much an issue.

Until you are sick, you don’t see how much a strain can be put on your relationships by a chronic illness. When you have to routinely cancel plans or spend long periods at home in bed, it can be incredibly hard for those in your life to understand. This especially occurs when you have an ‘invisible’ condition such as Lupus or Multiple Sclerosis.

There are many things that those who deal with some kind of chronic illness (myself included) wish our able-bodied counterparts could understand. In this article, we are going to look at 5 things we wish our friends and family understood about living with a chronic illness.

I DO NOT like cancelling plans

Cancelling plans when you have chronic illness

Contrary to many people’s beliefs, most of the time we don’t like cancelling plans. Sure, there are times when we just don’t want to do something or go anywhere, but that can be the case for anyone, NOT just those who are chronically ill. Most of the time we would much rather be out and about doing things and being around people than be stuck at home. But sadly, sometimes that is not an option and we have to cancel plans. It is often easier to assume the worse than it is to find out what is really going on. People can often draw their own conclusions instead of asking why people with chronic illness are doing things like cancelling plans. I have found that in order to help those around us understand what it’s like to live with a chronic condition, we have to be willing and ready to be open about our health. We also have to be willing to work with those closest to us to help them understand what it’s like on our side of the table.

My health does not define me

My health does not define me – While our health may impact almost every aspect of our life, it is not all that we are. For instance, I am not just Amber who has Lupus. I am so much more than that. I do have lupus, but my illness is not what solely defines me. I am Amber with Lupus, who is a daughter, a sister, a friend, a patient advocate, and so much more. So please remember we are so much more than our health and should never be defined by it.

Just because I look okay, does not mean I feel okay!

It is easy to put on a brave face and to cover how badly I feel with makeup, for a short time. Outwardly I may look put together, but what you wouldn’t know is that it took hours to get ready because I had to take a break every few minutes. Living with an invisible illness is tricky, people can never tell I feel based on my outward appearance. So I wish people would please just ask, instead of assuming.

Please don’t compare my illness or symptoms to another person’s

Just like no two people are the same, no two cases of a chronic illness are the same. You may know three people who all have Lupus, but more likely than not they don’t have the same issues. Please don’t compare me to anyone else you know with my condition. You would never compare two Americans just because they are American, so please don’t compare the chronically ill. Also, if you know someone who died from my condition, I don’t need to know!!!

Just because I felt good yesterday does not mean I will feel good today

Many people who are not chronically ill do not understand that in order to get out of the house, we have to scrape together energy and will likely pay for it tomorrow. Please don’t assume that just because I was out for a girl’s day yesterday that I will feel like going to brunch today. Chances are that if I really pushed myself yesterday, I will be paying for it today and quite possibly for several days to come. Please don’t assume that I am being untruthful when I say I am in bed today, just because you saw me when I was out yesterday.

Many people have a hard time understanding chronic illnesses since the majority of conditions that are chronic are invisible, meaning they can’t be seen by the naked eye. That alone can cause issues in relationships because one cannot see what the other is dealing with on a daily basis. The pain or the shortness of breath can’t be seen and therefore often can’t be understood. This is why it is imperative that we, as the chronically ill, provide education to those around us. It is imperative that we explain to those closest to us what a good day for us is as well as a bad day. If we never explain why we are always cancelling plans, people may eventually start to assume it’s due to something they are doing, rather than the fact that we just don’t feel like going out. It is also important that we let others help us remember, as noted in number two above, that we are not defined by our illness. While we want others to remember this, we also need to remember this for ourselves.

In closing, we can’t expect others to understand the things discussed above if we don’t ever tell them. If we never share our health with those around us, we can never expect people to fully understand. It’s important to try to ensure happy relationships with friends, which requires communication and understanding.

About the Author

Amber writes at theworldseesnormal.com. She is a Registered Nurse by but due to her illness she is no longer able to work outside the home. Although her years of medical background give her a different point of view on many topics. Her goal in life has become raising awareness for the issues those with chronic conditions face, as well as for the conditions themselves. She also wants to make sure that those suffering from a chronic illness know that they are not alone in their fight.

October 10, 2018July 15, 2019

Coping with Depression Through Music Therapy

A Chargie’s Poetic Journey Through The Great Depression

Trigger warning: Depression and suicidal ideation

Music Therapy Takes Form as Track by Track Album Review

On August 10, 2018 UK pop-punk band As It Is released their third full length album, The Great Depression. Expectations were high before this album’s release, seeing how it was supposed to keep the conversation about mental health going as well as bash stereotypes and the idea of romanticizing mental illness. It was supposed to be a coming of age album for today’s adolescent and young adult needs. Even with expectations of extremely relatable lyrics this album’s impact was mind blowing.

The second album, Okay, was heart touching. Even the few songs released early did not serve as adequate warning for what was to come. The Poet’s journey through grief accurately described my personal saga with only one difference. This poet suffers from chronic illness which tends to stir the mental health soup pot with anxiety disorders, depression, and even suicidal thoughts at times. Buckle up for the guaranteed bumpy ride because the road of grief has four stages: denial, anger, depression, and acceptance.

Track One: The Great Depression

Every great tale has an exposition detailing the purpose of its plot and every great road trip starts with a meaningful starting destination. We begin with the first track in the album, The Great Depression. A song breaking the fourth wall. Narrator speaks to the listener. We, the listeners, are the consumers. The song shares the duality of being both problem and solution. However, reality is sugar coated to cover insecurities. “I’m the sickness and the cure.

We tell you what you want to hear cause we’re so insecure” exactly describes the unhealthy paradox of answering “fine” to ever question of “How are you?” Instead of acknowledging there is a problem we hide behind the curtain and pretend we are invisible. Just because you’re wearing camouflage does not mean that you are hidden. Neither are your problems. Not only are we living in “The Great Depression” but we are also living in the lies we are selling. Denial happens to be the first phase of grief which makes this the perfect first track.

Track Two: The Wounded World

The second song is all about pointing out the hypocrisy in life. Society today allows individuals to quickly blame everyone else. We make ourselves look innocent when in truth “we’re pointing the finger that’s pulling the trigger, and in case you haven’t heard, we’re all to blame for the wounded world.” It is easy to blame everyone else instead of taking ownership. Humans are conditioned to always look for a cause for every effect. Yet, we almost never think to look within our own selves.

Personally, I am always quick to blame outside pressure and outside circumstances when it comes to my mental and physical health. Overbooking a schedule and saying yes to every invitation or request can create too much stress. These kinds of wounding behaviors result in self inflicted wounds. GI issues are a common problem for Chargies yet despite this knowledge we all tend to over indulge in foods we know we shouldn’t eat sometimes. Accepting blame where blame is due offers healing. “So raise your white flags up, and let surrender eclipse the sun. We never learn.” Anyone else want to raise their hand here?

Track Three: The Fire, The Dark

This song is all about losing relationships. Personally, platonic relationships are as difficult to lose as romantic ones but there is reason to believe this song is alluding to romantic relationships. “I start fires in the dark. Show me luck, show me fate, show me any escape. I start fires in the dark, burning bridges and hearts to the ground, cause it’s too late now.” A strong support system is essential in times of need.

Cruelly the worst of times is when many find themselves losing long lasting relationships. Watching them slip away uncontrollably sucks. I have lost quite a few people I considered friends due to chronic illness including mental health disorders. During the times that strong friendships are most needed the reality of discovering which friends are true sets in. It’s natural to question “What have I done?” or ” Why’d I tear myself away?” Self doubt reminds us we’ve made mistake after mistake. During these moments it is important to remember that we need to take care of ourselves before we care for others. It’s tough losing friends; however we must hold on to hope. And there’s always music therapy to help with loneliness.

Track Four: The Stigma (Boys Don’t Cry)

“Hold on, stay strong. You got to keep it together now. Just dry your eyes, cause boys don’t cry. No, no, boys don’t cry. No, no, cause boys don’t cry.” Beginning the second phase, Anger, is the fourth track, The Stigma (Boys Don’t Cry). This song sarcastically mocks the stigma that boys are not allowed to show emotion and instead encourages them to not be afraid to show how they feel. Life is rough for everyone in different ways. Bashing a whole gender for doing what is healthy, shedding tears, getting upset, expression emotions is ridiculous. Bottling up emotions can be very dangerous. Everyone should feel free to express their pain without receiving harsh criticism for doing so.

Being a female, I have not received the phrase “boys don’t cry” directed at me; however, I have received similar criticism. Growing up with Attention Deficit Hyperactivity Disorder (ADHD) and Generalized Anxiety Disorder (GAD) I was often told I was overreacting for bursting into tears, hyperventilating, showing anger, etc. I taught myself to bottle it up. This unhealthy coping mechanism lead to several major meltdowns. Only so much negative energy can be bottled up before it explodes like Mentos in Diet Coke.

It was not until Junior Year in high school that an accurate diagnosis for chronic pain was supplied. Even after a diagnosis of Ehlers-Danlos Syndrome (EDS) accusations of over reacting were common. Phrases such as “toughen up”, “suck it up buttercup”, and “fake it till you make it” were constantly being thrown. The Stigma reminds me that it is okay to show emotion and reminds me that crying is a natural and healthy response. As long as I have hope, all will be fine.

Track Five: The Handwritten Letter

The Handwritten Letter is a swan song. It is a desperate call for help. “I need you when I’m bruised and broken. It’s all that keeps me here and hoping. I’m tangled in your mind unwoven. I need you when I’m bruised. I need you when I’m broken.” Everyone needs a support beam to lean on. Metaphorically, collapsing to the ground without it is inevitable. Not only do the lyrics of this song emphasize this fact, but the conversation in the background after the second verse does as well.

I’m constantly being reminded throughout this song of my immediate family and my best friends that form my safety net. Having someone catch us from a nosedive from great heights is critical. If you suffer with mental wellness make sure you know who the people are that will throw you a rope when you need to climb out of a hole you’ve dug for yourself. When it seems that my heart has lost all hope and glowing exit signs seem like a greeting, I rely on my support system.

The spoken conversation in the background before the pre-chorus resonated as similar words have been spoken to my close family and friends. Chronic illness and mental illness are intertwined often leading me to feeling like trapped. This song is my screams I beg my support system to hear when I am at the bottom of the hole I dug. It’s too deep and impossible to get up on my own. I need a team that is like family to bring me back to ground level.

Track Six: The Question, The Answer

This acoustic track slows things down. It brings up the question: is living and holding on really worth it? Amidst the depression feeling empty inside with no will to live on becomes the norm. We end up questioning everything that we know to be true. Questioning our support system, our reasoning, and reality all at once in a loop while desperately seeking an end to all the confusion is consuming. “Show me how it ends. Will I still be scared to live?” sounds like a sweet serenade. Severe chronic pain, depression, and anxiety have made me wonder if fighting is worth it on numerous occasions. Fear of living in agony results in wonder of what would happen if the choice to end the suffering and leave the pain behind was made. It’s good to know I am not the only one with the same thoughts as the bridge “say goodnight tired eyes, say goodnight one last time.” Falling asleep hoping to not wake up the next day, yet each morning I arise still alive. If suicidal thoughts are common, and keep pestering the mind, and becomes seen as a way out of this hell, it is important to stay strong and remind ourselves now is not the time.

Track Seven: The Reaper

I’m not sure why everyone has to give The Reaper such a bad reputation. He just offers his hand so you don’t have to cross over to the afterlife alone. This song is about the internal struggle between wanting to give in to death and wanting to stay alive and keep on fighting. I am currently living in this song as I battle with my will to keep on living and the idea of all my pain escaping and giving up. This can be seen in the opening lyrics of the chorus, “Now what I see and what I dream, they don’t align”. To be honest, I am not sure I am ready to give up living.

Life in all its unpredictable measures has been certainly interesting and most definitely challenging at times; yet, the flame in the torch of hope still flickers. Among the guilt, depression, anxiety, and physical pain there is still that hope that life is worth continuing on. That hope exists with every live show announcement and with every opportunity to photograph a live show. It exists hanging with my friends and within conversations and laughter during family dinners. For almost every reason I would want to end my life there is a counter reason for why I should continue living. “He leaves my wrists untied. Offers his hand and tells me to decide. Now I am begging him let me keep my wasted life. Please, it’s not my time” croons the lead singer. I am proud to say that at the moment that it is indeed not my time to die.

Track Eight: The Two Tongues (Screaming Salvation)

Out of all twelve tracks this song hit home the hardest. The internal struggle continues with the lyrics, “I‘m not sure he’s right, but I’m not sure he’s wrong. I’m just desperate to belong.” Everyone wants to feel like they belong. I am no exception. The familiar archetype of two voices – positive and negative, good and evil – one on each shoulder helping an individual make an important decision is being used as the sole structure of the entire song. Two distinct voices with polar opposite goals try to force a choice. In this instance, however, one voice is trying to convince one to stay alive through both the good and bad times while the other voice entices one to follow them into the afterlife where all the problems will vanish. These voices currently argue inside my head. Most days I listen to the voice of Hope. Darker days I wonder if the escape to salvation is worth it. On good days the debate happening is barely noticeable. On bad days it is a marathon. No matter the day, it is always the same banter summed up by the chorus “Her voice like a sunrise. His voice like temptation. She sings to me softly. He’s screaming salvation”. The eerie intro is also a nice bonus that has this tale sailing along smoothly about the rough sea.

Track Nine: The Truth I’ll Never Tell

It’s hard to say you are okay when in actuality you are drowning deep in doubt. Pun intended. My belief is that “The Truth I’ll Never Tell” is a sequel to a song off their debut album, Never Happy Ever After “Drowning in Deep Doubt”. Where “Drowning in Deep Doubt” talks about the truth of the matter, “The Truth I’ll Never Tell” goes into depth of why it’s hard to share the truth of why you have been distant without bringing everyone “down down down.” How do you explain how you really feel without sacrificing everyone else’s general happiness?

This song dives in to the “fake it till you make it” mantra with lyrics such as “I could tell you how I’ve really been/ But would you even want to know/ Don’t want to bring you down down down/ If I open my mouth I’m gonna bring you/ Down, down down…” The same monotone answers are always the replay when asked the polite well being inquiries. “I’m okay.” “I’m fine.” “No really, I am okay.” Saying you are okay to others while acknowledging that everything is far from alright internally is much easier than admitting to your friends and family you are not okay. In fact, it is the best way to avoid unwanted questions. This stubbornness and facade of “okay” instilled in ourselves seems like survival. Truthfully, it is the bottling up of emotions. That is just as dangerous as the thoughts causing us to be withdrawn from society.

Track Ten: The Haunting

Before listening to this song I theorized that As It Is were going to do a song similar to the style of The Misfits or Set It Off with their songs, both called “The Haunting”. I was at least hoping for some My Chemical Romance nostalgia with a Three Cheers For Romance vibe. Hence why I was totally caught off guard and in a state of shock when I heard the intro of the song “It’s Haunting It’s Haunting…” with a major Big Time Rush vibe. I immediately paused, replayed the intro, paused again, and then listened to some Big Time Rush. The similarities were too uncanny and I really felt Ben, guitarist and vocalist for As It Is, was trolling me; or at least was attacking me with nostalgia. Behind the boyband appearance this song talks about what it would be like if you actually listened to the Reaper. This chilling scenario with an upbeat bounce is met with acknowledgement that you are not okay.

Acknowledgement is the first step to acceptance as well as the first step to striving to get help. The lyrics “Can you feel your sister staring at your grave/ And if you could take it back if you could see her face.” reminds me of what it might be like if it were my brother staring at my grave. I love my brother way too much and no matter what demons are possessing my brain and even though death is offering a retreat from the pain; I could never leave my brother grieving like that. I acknowledge that it’s hard, especially when we “you die to dream, and you dream to die”; yet we can’t keep running from ourselves. Mental illness and physical illness does not go away by ignoring it.

Track Eleven: The Hurt, The Hope

This song talks about self harm and harmful coping mechanisms. While it doesn’t talk about cutting specifically, it mentions drinking and smoking which are just as harmful. Pain acceptance requires coping mechanisms and sometimes falling back to unhealthy habits such as smoking, drinking, cutting, starving, burning, or otherwise harmful behaviors is inevitable. This is shown with the lyrics “Because we all need to feel release. Because we all wanna be at peace.” I do use music and writing as healthy coping mechanisms but sometimes I fall back into old habits of punching, pinching, and scratching myself until I bruise or bleed. Music is my number one coping mechanism. I have a playlist for everything from nausea to high pain to even a mental health playlist. All are on Spotify and I’ll share a few of them here and here and here.

Track Twelve: The End

“Nobody’s listening.” We have reached the end of this track by track album review and it ends with “Nobody’s listening.” In retrospect this is the truest statement ever made in an album. Sure we say we are “listening”, but are we really listening? As the song says, “You only heard the words not the hurt/And absent of pain/They don’t mean a thing/They don’t mean a thing”. Words can only do so much, and no matter how much we scream, if our emotions and intentions of our swan songs are not being heard we will end up going mute. I haven’t reached the point yet of giving up hope, although unfortunately one million people a year commit suicide. Every one successful attempt, twenty other attempts have been made.

Suicide is an epidemic caused by the empty feeling of hopelessness. It is crucial to thoroughly listen to our peers when swan songs are being sung. We must pay attention not to the words, but where the emotion is coming from. Read in between the lines of “okays” and “I’m fines” to find what others have been begging for someone to find. “And I screamed for you until the day I gave up and lost my voice/So with crimson arms and this broken neck/ You fucking tell me who made this choice!” We have to be great listeners, yet also we hold one more responsibility. The responsibility to keep the conversation going. That’s something that I will do with every breath that I take. So I encourage you to take the first step. Listen to this album, share this review, and take a deep breath after the silence once the last track ends. Don’t stop talking about mental health. We must keep the conversation going.

About the Author

Hana Belanger is a disability advocate and activist, contributing author for The Unchargeables, slam poet and important part of the Unchargeables Twitter Team. College student and barista by day, music photographer and fan-girl by night, this nerd of all sorts balances chronic illness, a social life, and learning to be an adult. An optimistic gal who always knows where one can turn on the light even in the darkest of times is still trying to find the meaning to life. You can find her living in the moment usually at a concert or cafe with ice packs, a camera, and headphones.

October 2, 2018

Dysautonomia and Achieving a Better Quality of Life Through Exercise

Gentle exercise can help symptoms of Dysautonomia.

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.

September 21, 2018July 15, 2019

Chronic Illness Perspective Attending Warped Tour: Part Two

Chargie Goes Warped Part 2

Attending Warped Tour from a Chronic Illness Perspective

The people you meet at Warped Tour are some of the kindest people in the world. Everyone has a different walk of life and their own struggles, mine happens to be Ehler’s-Danlos Syndrome (EDS); yet, on that one day all differences are pushed aside. Everyone shares a bond stronger than most: a love for music.

Story Untold

I was grateful for a saved spot. People began talking and sharing laughs before the next scheduled set was to appear. Never having heard Story Untold before the person next to me encouraged staying saying they were pretty cool. I love discovering new music so I locked my wheels and prepared to be amazed by a new band. Just as I anticipated, I became entranced with their sound and thoroughly enjoyed their set, even if they reminded me of an off brand All Time Low from Canada. Janick Thibault, vocalist of Story Untold, looked just like Alex Gazkarth, vocalist of All Time Low. If it was not for Janick’s tattoo sleeve, one could not be blamed for thinking up conspiracies that Janick is actually a clone of Alex who was shipped as a baby to Canada. Along with their awesome original music, I was thrilled when the band threw a curve-ball of nostalgia to the crowd by covering classic Warped Tour bands in a pop punk mashup.

Where Will We Find New Music Now

Warped Tour was always good for introducing people to new music and creating gateways to fan bases. In 2016 I heard a band called Pepper play their set while I was in line to meet a band by the main stage. I fell in love with their sound and am proud to call myself a fan of their music today. It is a little sad that this is another loss from the end of Warped Tours.

As It Is

I found myself singing along to As It Is’s set-list while waiting in the merchandise line for Sleep on it. I was super excited to hear the newest As It Is songs performed live. At the time their third full length album, The Great Depression, had yet to be released. The only two songs from the album available to the public were The Wounded World and The Stigma: Boys Don’t Cry. The Wounded World was about how society is always quick to blame everyone else except for themselves, which in itself is hypocritical. We are so busy pointing the finger and then pulling the same trigger. The Stigma was about breaking the stigma that “boys don’t cry” and that it is okay for boys to both feel and show emotion. Hearing both played live and shouting them at the the top of my lungs was absolutely rattling and surreal.

Set It Off

Arriving at the Living the Dream Foundation riser just as Set It Off was playing Killer in the Mirror meant the first two songs, Uncontainable and The Haunting were missed. This information was found on Twitter. The internet is a great place to find leaked set lists and any spoiler imagined. Since I was still using the wheelchair I used the lift to get on the riser while my dad took the stairs. Set It Off were only performing on three Warped Dates and their fall tour did not include a Boston date. I was extremely grateful for catching as much as I possibly could. Who knew when I was going to see them again? After The Killer in the Mirror I was surprised and enthralled that N.M.E was playing. N.M.E stood for No More Excuses and was one of my favorites off of their second full length album, Duality.

Why Worry

As always, Set It Off ended their set in the best way possible with Why Worry. Why Worry usually begins with a sing along. Yet, this show Set It Off went right into it. They even brought on a kid from backstage to sing the chorus before the bridge. The only thing that really bugged me about this show is that with the new era being brought on, the Duality diamond has disappeared and turned into an hourglass. That meant instead of ending the shows with hands forming the diamond when Cody Carson, vocalist of Set It Off, says “We are Set. It. Off” at the end of their set, arms were crossed to form an hourglass. The duality diamond is supposed to represent the balance and duality of good and evil inside a person. The quote from the song “Duality” from the album, Duality, is “I am good, I am evil, I am chaos, I am solace, I am human. And that’s all I ever wanted to be.” That was the representation of the logo being a diamond. To change the logo was to change everything.

Simple Plan

Immediately after Set It Off’s set on the Journey’s Left Foot stage Simple Plan started their set on the Journey’s Right Foot stage playing “I’d Do Anything”. Simple Plan was absolutely amazing. I planned on watching a few of their songs and then going down the lift to meet Set It Off before returning the wheelchair and using my cane again. But, the wheelchair lift operator was off the platform. Good news was that I got to stay to watch them shoot water at the crowd using super-soakers and play classic hits like “Jump” and “Addicted”. When I finally made it on the ground, Simple Plan was ending their set with “I’m Just a Kid” and the line for the Set It Off signing was about a half a mile long! It took the rest of Simple Plan plus the whole entire 3OH3! set before I could finally meet the band and have them sign my notebooks as well as for Cody to write down a quote for me. I had Cody write the lyrics “Devour the critics, dismiss the critics” from the song Dream Catcher because I wanted to get that tattooed on my forearm in his handwriting. Having the lyrics just written down inspires me to not care what anyone has to say while I waiting to get the tattoo. I will continue to fight for my dreams and not let anyone push me away from them.

Dieter Unrath

Immediately after meeting Set It Off it was time to return the wheelchair. I took my cane and went on a search to find Dieter Unrath, photographer/drummer/catering/awesome person, so I could interview him. Once we found each other we made our way to a quieter place near the amphitheater and sat down to have a chat about mental health in general and on tour. Talking with Dieter was an incredible and engaging experience. We went over how tour is both physically and emotionally exhausting as well as the reasons one should reach out for help. We also discussed healthy vs unhealthy coping mechanisms. You can find the video link here to see the awesome interview:

Wrapping Up Warped Tour

Wrapping up the evening we hit the amphitheater to catch as much of R I L E Y’s set before leaving the grounds early due to my father and I not feeling to well. It was a long hard day in the heat, so leaving a little early was not the worst thing in the world. Besides, health comes first. The aftermath of the festival meant a week of recuperation and soaking in the memories made. The end of Warped Tour after 24 summers is an emotional one, yet I feel proud and blessed to have participated in the last three years. I am inspired to always keep believing in the scene as well as believing in myself and my own capabilities.

About the Author

September 20, 2018July 15, 2019

Chronic Illness Perspective Attending Warped Tour: Part One

CHARGIE GOES WARPED PART 1

“I couldn’t wait for the Summer and the Warped Tour!” The infamous phrase from Blink-182’s “The Rock Show” brought out the excitement for every emo kid across America. For 24 summers The Vans Warped Tour presented by Journeys was an escape from reality for a single day. For just one day people from all different walks of life gathered together and spread positivity as they all shared love for one thing: music. Growing up both chronically ill and musically obsessed it was not surprising that I too found solace and support from the “punk rock summer camp” and “summer camp for misfits” for three summers at the Vans Warped Tour. This year Kevin Lyman, the legend behind the madness and tour founder, announced Warped would be going on it’s final cross-country run this summer. An era was ending. As a punk rock Chargie I felt it was my duty to report the events of the final Vans Warped Tour live. Here is the recap of the adventures at the Xfinity Center in Mansfield, Massachusetts for one last “Summer and the Warped Tour” experience.

Hope for the Day

The goal was to attend the free mental health workshop TEI (The Entertainment Institute) with Hope for the Day and Patty Walters from As It Is before gates opened. Unfortunately, due to a late start, not only did that not happen but the first set was also missed. Hope for the Day is an organization based in Chicago that achieves mental health and suicide awareness through proactive suicide prevention and mental health education. As a mental health and disability activist it was important to engage and live tweet the mental health discussion. Unfortunately, as often happens living with chronic illness, change 992 was put into action. On the bright side, it was not raining like last year. The sun was shining and the day was just beginning. A late start was not about to ruin the last Vans Warped Tour.

Important Delivery

With cane in hand and a bag on my back my father and I made it through the gates and inside the venue. The first stop was to find the Sleep On It merchandise tent. A poster and Arnold Palmer needed delivery so it only made sense to stop there first. Conveniently they were located across the Owly stage, which was where the band would be performing later on in the day. An ice-cold Arnold Palmer was handed to their merch manager and all around awesome personality, Alex Smith. A camo hat for dad was purchased and cool Sleep On It pin and sunglasses were received. A great start to a great day. The next stop was to the Grayscale tent to finally buy a copy of Adornment (their debut album). We then hit the main stages to catch the We The Kings set. In 2016 I had missed their set, so naturally I made it a goal to see them.

We The Kings playing on the Journey Right Foot Stage in Mansfield, MA July 27, 2018 at Vans Warped Tour. Photo by Hana Belanger.

Inclusivity Matters

What is really cool about Vans Warped Tour is how the Warped staff work hard to be inclusive and accessible. Across from the main stages was the Living The Dream riser so disabled fans and their friends would be able to see their favorite bands play. On one side of the riser were stairs and the other side was a wheelchair lift. Just walking in the heat had caused fatigue so after climbing the stairs and hanging the cane on the railing and it was time to enjoy We The Kings play their set. A spectacular view and a well needed rest from walking the venue. The day had only just begun after all. I needed to save as much energy as possible to make it through the day.

Relatable Rock Stars

Once their set was finished my dad suggested we head straight to the As It Is tent to catch them at their meet and greet. After wanting to meet the whole band for some time, this was the opportunity. Of course, as soon as we got there a whole line had begun and the band was running late. It didn’t surprise me that a large line was being formed early. As It Is have grown so much since the band they were six years ago with relatable lyrics and strong advocacy work to keep the mental health conversation going. In fact, their newest album which was just recently released, The Great Depression, goes over keeping the conversation of mental health going and how it is okay to not be okay. I ended up buying a download card and hope to be reviewing the album soon.

The line was long, so while my dad stood in my place I would sit down on the ground and listen to the set of Chase Atlantic. By the time I got to meet the boys I was overflowing with nerves and clutching my cane with trembling hands. The four gentlemen were understanding and even chatted with me a bit. Benjamin Langford-Biss, guitarist and vocalist of As It Is, explain to me that “no lyrics are sh***y lyrics if they come from the heart” after apologizing for the words in my songwriting journal I wanted to have signed. What was truly amazing was how genuine they were. Patty Walters, vocalist of As It Is, smiled and asked questions. After apologizing for being nervous they all gave assurances that everything was fine. A famous Patty Walters hug before taking a picture with the lads was amazing. It was truly an honor meeting them.

We The Kings

On the way to the tent to meet We The Kings a portable charger had to be picked up so Twitter could be updated as much as possible. Service at the venue was limited so it was tough. While trying to distinguish between the line for We The Kings and the crowd for Knuckle Puck I ended up collapsing because my knees gave out. While my dad went to go get a wheelchair from guest services I met a few fans in line for We The Kings and ended up striking conversations with them. We The Kings was one of the many touring bands whose songs I constantly used to help me cope with chronic illness. Songs such as “Check Yes Juliet” and “She Takes Me High” would distract my mind from symptoms such as moderate to severe joint and muscle pain as well as nausea due to Ehlers-Danlos Syndrome (EDS).

Healing Through Music

Other songs like “Heaven Can Wait” and “Just Keep Breathing” remind that life is always worth living, even through the bad days of wanting to jump off “Skyway Avenue”. Their upbeat sound and positive lyrics were a huge help in staying strong through fatigue and the craziness chronic illness brings. The first time seeing them live as well as the possibility of meeting them fueled excitement. I was, however, hungry; so, as soon as dad came back with a wheelchair cherries and strawberries made a healthy snack while waiting for the chance to meet the band.

CTFxC

Before I had a chance to realize what was happening my dad had wheeled me in front of Travis Clark, vocalist of We The Kings. Immediately he greeted me with a hug and asked my name and how I was doing. He then took my Punk Rock Summer Camp shirt and passed it around to be signed. I made my way to each member until I reached Charles Trippy, bassist of We The Kings as well as daily vlogger for a YouTube channel called CTFxC. While I was saying hi he noticed my temporary tattoo I had on my shoulder, mimicking the tattoo he has on his arm. It was a simple blue and purple wifi symbol, although in the CTFxC stream of things it had way more meaning. I mentioned that I loved his vlogs as well as Travis and Danny’s too. I even showed him my CTFxC and This Star Won’t Go Out wristbands.

Sneaky Selfie

After a few minutes of chatting he asked if I had a phone and then snuck a selfie with me. Photos were not part of this meet and greet according to a very official looking cardboard sign, yet Charles took the time to quickly sneak a photo. Him going the extra mile really made all the difference. My dad started to pull me away so we could stop at the med tent and cool down for a few minutes. I quickly put the brakes on, insisting that I needed a hug from Danny Duncan, drummer of We The Kings, before leaving for a quick break.

Sleep On It

We made it just in time to sneak in for a spot in front of the barrier just before my friends in Sleep On It were about to hit the stage. This marked my third time seeing this up and coming Chicago pop punk band and my wheelchair could not have been parked in a better spot. Before Warped Tour had started on its final run teasing the band online had been in fun; even going as far as a petition to have them cover Smash Mouth on tour. This earned disapproval by Jake Marquis’s, guitarist and vocalist of Sleep On It. Earning an eye rolling emoji after persistently pestering the band account to cover Smash Mouth was weird. I had a feeling they would not play a cover, yet was still anxious to see if they would make mention of it. During sound check I was both surprised and hyped to hear Teddy Horansky, guitarist and vocalist of Sleep On It test the mic by singing “Somebody once told me the world was gonna roll me, I ain’t the sharpest tool in the shed” by Smashmouth. To my dismay, Jake did not continue with the song but just did the scripted “Check one two, check one two.”

Spectacular Set

The actual set was beyond spectacular, like it always is watching the sleepy boys take the stage. It had been a hot minute since I had seen Luka Fischman, drummer of Sleep On It, play a set. Last time I caught the boys on tour, Eric Somers-Urrea, drummer of Marina City, was filling in for Luka while he rested after a shoulder injury. Being able to see Luka taking it away on the kit felt like everything was alright again. The highlight of the set was not Luka’s awesome drumming skills nor was it the fact I knew every single word of each song in the set list and had the perfect view from which to shout the lyrics. Hands down the best part of the entire set was the energy of AJ Khah, the band’s bassist.

A Better Bassist

Bassists who do nothing but stand in place and play has always been a grudge of mine. Khah is the polar opposite of that. He runs across the stage and headbangs, making phototastic hairflips happen. He engaged with the crowd and rocked every single note. As a photographer, that is the stuff that is entertaining and preferable to shoot.

Warped Music Chronic Illness — Photo taken by Donald Belanger. Edited by Hana Belanger.

Feeling Connected

As a human being it immerses me into a whole new world where everyone geeks out about music as much as I do and no one judges you for it. That’s how every concert experience should go and Sleep On It exceeds my expectations each set. At the close, while they all walked off, for some reason had this new found confidence and yelled “ONE MORE SONG, PLAY COPE!” Jake heard my comment and ran back on stage, locking eye contact with me and shouting back, “NO! NEVER AGAIN!”

The Most Annoying Fan on Twitter

After their set I noticed Luka was talking to some people on the other side of the stage. There were some nice people that they saved a spot while we traveled over to go say hi. Of course I have to make every encounter awkward, and just waited until he noticed me sitting and approached me. Continuing with the awkwardness, I introduced myself to him as “the most annoying fan on Twitter”. He did not agree and dismissed this idea. Despite my annoyance my love for the lads really shows through. We had a nice conversation until I was asked by who I assumed were his parents if a picture could be taken. Luka admired my hat and asked me if he could wear it for the picture. Curious to see him wear it I agreed and let him try it on for size. A bit small, but I had to admit he rocked the Texas hat better than I did. That surprised me because hats were definitely a me sort of thing.

As It Is hit the stage at 4:00 and their was a nice view from the Sleep on It merchandise tent line. They had made several jokes about the 4:20 meet and greet time during their set so of course I felt compelled to joke back when I met them. Alex Smith, Sleep On It’s merchandise manager was handing out stickers and signed CDs to the line. Before handing my books to be signed I apologized for yelling “PLAY COPE.” All was forgiven and we were able to take a quick picture before hurrying to catch what I could of Set It Off.

Continue to follow the rest of Hana’s adventure #ChargieGoesWarped in Part 2 available Sept. 21, 2018.

About the Author

September 10, 2018July 15, 2019

5 Ways Dance Has Helped Me Cope with Chronic Illness

Read about how dance can help you cope with chronic illness on The Unchargeables!

When you’re chronically ill, it’s often hard to keep up with hobbies that you once were able to do. Thankfully, one of my hobbies I’ve been able to keep up with, albeit at a slower pace, actually helps me cope. I try to be very realistic when it comes to chronic illness. I know that I need to protect my body and treat it well, but you also need to take comfort in things you love, so I try to find that happy balance. I know there are many people, especially with my condition, hypermobile Ehlers-Danlos Syndrome (hEDS), that were or are a dancer and have benefitted greatly from it and equally have had a lot of issues from it, which I have too. I’d love to share some of the ways that dance, in particular ballroom and Latin, has helped me.

1. Family and Social Aspects of Dance

One of the big ways in which dance has helped me is not necessarily dance itself in the physical sense, but the community behind it. I’ve been at my dance school since the age of 9 (I’m now 25) so I’ve really grown up with it. I feel like my teachers and people I have met there are all part of my little dance family. Even if I didn’t get to dance or one day am unable to dance at all, just meeting up with people that share the same passions is really rewarding. I now go to a children’s class and an adult class once a week and really look forward to that time to meet and talk to people. I really enjoy seeing others progress too, especially some of the children who I’ve known since they were very young. It’s so lovely to see them succeed and find their own little family.

At University I was also part of a dance team. Other than that I didn’t have many friends there, so my dance friends really were a major part of uni life. A lot of them were also there for me when I was really struggling in my final year, as that was when a lot of my pain and issues started. It is a support system that’s really beneficial, especially now that I’m chronically ill.

2. The part dance played in my diagnosis

TW for weight issues/eating disorder type content.

This is a tricky one, but in a way dance did help me to be diagnosed. I’d had the odd issue in my teens like headaches, anxiety, and then some GI issues in my later teens, but nothing much that would have pointed in the direction of EDS. When I was 19, I had some issues with anxiety that impacted my physical health and eating habits and also therefore caused weight loss. A lot of my fatigue started after that, but I improved a little bit after a few months at home.

In the next year I was working abroad as part of my university degree and unfortunately didn’t dance whilst I was there. At the time it didn’t really bother me. But when I got home and started my final year of university, it really started to get difficult and I was in a lot of pain. So much so that I actually failed my last year due to feeling so ill. That prompted me to look into what was wrong. After seeing a rheumatologist, they recognised my symptoms as EDS and I had my diagnosis. Looking back, I realised that maybe dance had been keeping me strong. Although it did cause a lot of pain, maybe stopping was a good thing in the long run as I may never have been diagnosed with EDS.

3. The way in which dance supports me physically

On the advice of my rheumatologists I’ve kept up with dancing and eased back into it after stopping; they believe that as long as I’m careful and pace myself that it will help to strengthen my muscles again. Unfortunately with a lot of activities like dance or gymnastics, people tend to get worse when they stop or have to rest an injury. I know that I’m fairly lucky, as some people aren’t able to dance again after an injury. I’m always thankful that I’ve been able to get back into dance being a part of my life. I can’t do as much as I was doing before, but even just the little bit I do helps. With my type of dance, it is quite easy to refrain from hyperextending and stretching too much – a lot of the moves tend to strengthen.

Due to my dysautonomia-type issues, it’s also important to maintain a bit of cardiovascular conditioning, so the warm ups and slightly faster dances help to keep up my general fitness levels, too. Being able to do some beneficial but low impact activity really helps me to cope with finding the balance between not overexerting, and therefore making myself worse, versus the other end of the spectrum of not doing enough exercise, which can also make you worse. This is something that unfortunately applies to a lot of chronic illnesses.

4. Structure and Reason

Another thing that can happen with chronic illness is that you can lose structure in your day and just life in general. At the moment I’m not working, as it’s hard to find jobs that suit how my condition affects me, so I’m at home a lot, which can get quite lonely and boring. Something as simple as having a dance class scheduled or an exam to practice for gives me a bit more to look forward to and to occupy my day with.

5. Mental Health Benefits

As well as having a physical illness/disability, I’ve also struggled with mental health issues from the age of around 15 – anxiety and low mood being the main ones. Something like dance gives me a reason to be more positive and also gives me some confidence despite my anxiety. I’ll never be the most confident person or without anxiety, but sometimes dance lets me have that little bit of sparkle and confidence that I am good at something. I’m also a big believer that mental and physical health really do affect each other so being able to improve both is very important.

About the Author:

Chloe is 25 and lives in the UK with her family and two guinea pigs. She is a French and Religious Studies graduate, dancer, music and musicals lover, football fan and has hypermobile Ehlers-Danlos Syndrome.