I remember having a dream as a small child. I was with a circle of adults around a fire and there was something that they were not telling me. I awoke feeling cross and very frustrated and the memory of the dream lingered…
As a young, able-bodied adult, I left home and did a degree in Design Representation (modelmaking). I commuted into London to work in various workshops. I took up Live Roleplaying, Yoga, Tai Chi. Work stress made me change course, learning Reiki on the way. I gained a Diploma in Montessori Directress (preschool education), commuting up to four hours a day.
Marriage, motherhood and moving house followed. Pregnancy was wonderful but my daughter and I are lucky to be here and nobody could tell me exactly why my body went so wrong.
Summer, 2012: I’d brought littl’un to a friend’s birthday party. The garden was full of fun – crafts, facepainting, treats. Whilst my daughter was having a great time as a dinosaur, I grabbed some nibbles and went to chat with the other mums. However, I felt wrong. Dizzy, clumsy, finding it hard to get my words out or find them at all, I sat in the shade quietly promising myself I’d see my GP. This just added to a growing list of niggling little things they couldn’t find a cause for.
I’ll save the whole diagnosis story for another time, though, as what I’d really like to get across is just how disability crept up on me. It was the fatigue that got to me first. I’d had it for years without realising that it wasn’t normal to feel like this. At school, at Uni, it was just put down to growing and learning. My first jobs – commuting, working long hours, surely being this tired upon waking was simply a result of that?
As a new mum, again, exhaustion had an explanation. I’d joke about having ‘mumnesia’ along with the other new mums, but my forgetfulness didn’t go away as my child grew.
I’d walk my daughter to playgroup, to pre-school, down the same village road I still travel. She started school a bit further down the road and one day I noticed that I wasn’t walking straight. I started getting odd sensations or lack of feeling. By July 2014 I was using a walking stick to help me cope with involuntary movements, neuropathic pain and balance issues. by the end of the month I’d discovered how much clearer my head was when I borrowed a supermarket wheelchair. It also reduced the myoclonic jerks. By that September I was using a mobility scooter for most of the school run trips and by the following September I’d bought my Smartcrutches, having finally been diagnosed with EDS in August 2015 (confirmed by a geneticist Dec ’15).
I had to be patient, probing, persistent and proactive to help the medical professionals around me arrive at the complex answer to that first question ‘Why am I always a bit dizzy?’ and the cascade of other questions that followed. I’ve only just (in May 2016) been diagnosed with PoTS on top of the EDS etc.
Thankfully, the dizziness is manageable, the involuntary movements have all but gone (it made beadwork nigh impossible!), I’m receiving appropriate treatment, learning to pace well, brace appropriately and eat more healthily. I have to thank the online patient communities for a huge amount of support, information, understanding and genuine caring. You yourself might have spared a moment to write to me, hidden behind one of my aliases. Thankyou, whoever you may be, for your en-courage-ment. (I needed you to notice that word within a word there).
For the first 40 years of my life I had no idea that I’d been born with a predisposition to disabilty. I only had that vague, intuitive feeling since I was young that something was different about me. I’ve learned to love who I am (“…a very interesting person” I’ve been told more than once) and I embrace my life just as it is.
Yes, I have become disabled but through my journey of self discovery, I have also become empowered.
Spanish-style music was playing in the background. It was unusually hot for October, but I could feel a slight breeze on my cheek. The nerves in my limbs were twitching like they wanted to get up and run yet felt like they were being held down by cement. My eyes were closed, but I could see lights dancing and swirling like waves of fireworks in my head. I vaguely heard a man walk by and comment in my direction, “I guess you can have too much fun.”
This was me—sprawled out on a table in the wine garden at Disney’s California Adventure Park. It was the nearest place I could get to after exiting a ride with my kids and sensing I was going to collapse. It felt like I was in a dream. I had no perception of time or the fact that I had been non-responsive for over two hours.
The paramedics that huddled around me were prodding me and asking me questions, but they seemed so far away and I was just too tired to answer. Too tired to open my eyes. Too tired to move my leg that had fallen asleep some time ago. In the back of my head I could hear a frantic voice whispering, “Something is very wrong!” But at that moment I was just too tired to even care.
Little did I know that this incident was the beginning of an illness turned disability that would change my life.
Postural Orthostatic Tachycardia Syndrome (POTS)
So what was this mystery illness? Postural Orthostatic Tachycardia Syndrome, also known as POTS. As my doctor explained, upon standing my heart rate increases much more than is normal. While this is a defining characteristic of my condition, it is not just my heart rate that is altered. POTS is a dysautonomic disorder. It affects the autonomic nervous system, which controls our bodily functions that we don’t usually have to think about, like heart rate, circulation, blood pressure, breathing, digestion, temperature, hormone production, etc. POTS can be triggered suddenly by a trauma or viral infection, as it was in my case. (I’d had a sore throat for a week and been under a lot of stress from work as we embarked on our family vacation.)
While many of my symptoms are present all the time, they are amplified when I’m sitting up and even worse when standing. Because of poor circulation and low blood volume my brain suffers from not enough blood and oxygen. My symptoms include brain fog, dizziness, migraines, chest pain, nausea and other gastric issues, temperature control problems, and extreme fatigue and lethargy. I get overstimulated quickly– movement, light, and especially noise really affect me. Additionally, my body overproduces adrenaline, causing intense tremors and muscle spasms.
Overnight I went from being a relatively healthy, active person to someone who could barely get out of bed.
Chronic Illness Affects the Whole Family
Katie Carone Mommy Can’t Dance
I have always been a go-getter and an overachiever– from dancing 4-6 hours a day and attaining valedictorian in high school to an adulthood of teaching group fitness classes, owning and operating a small business, and being a wife and a mother of four. To lose my mobility and functionality was devastating.
This condition was not just life-altering for me, it affected my whole family. I could no longer take my kids out for the adventures we loved, like going to the children’s museum or hiking in the mountains. I couldn’t go to important events like music concerts, dance recitals, or preschool programs. And the day-to-day limitations were even harder to accept. I could no longer make dinner, help kids with homework, or get them ready for school or bed. I oftentimes could not even get myself out of bed without collapsing. (My husband has found me on the bathroom floor more times than I care to admit.)
I was battling to come to grips with my new reality. But I was not the only one. My kids were also struggling to comprehend why I couldn’t do what I used to do.
Our family has a tradition of taking turns sharing good news and bad news each night at dinner. The nights that I could make it to the dinner table, I noticed a trend in the news my kids shared. My four-year-old twins started repeating the same news night after night. “My good news is that I love mommy. My bad news is that I miss mommy.” Even my 10-year-old daughter would say, “My good news is that mom was able to come out for dinner. My bad news is that mom is still sick.”
I have vivid memories of a meltdown my daughter and I had one evening as she was preparing for her dance recital. She came into my room so I could do her hair, yet I couldn’t even sit up on the edge of my bed long enough to do it—let alone make it to the recital.
Over the holidays, one of my twins rushed into my room so excited for me to come see the Christmas tree he had helped decorate in the basement. After five minutes of him tugging on my arm begging me to come, and me trying to explain why I couldn’t simply get up and walk down the stairs, we both ended up in tears.
These are just a few of many examples.
Mommy Can’t Dance
As a mom, it is no fun to feel physically awful, but it is worse to know that your kids are suffering too. I hated that my illness was affecting my children. I needed a way to help them understand that my illness and inability to do things for them or with them in no way affected my love for them. Additionally, any chronic illness brings with it feelings of helplessness for the patient and the loved ones. I wanted my kids to find ways that they could feel helpful and loved. Thus, the book Mommy Can’t Dance was born.
While this book is near and dear to my heart, I recognize that I am not the only mom struggling with chronic illness. I hope this book can help other mothers and children that are similarly struggling.
The children’s book “Mommy Can’t Dance” is available at:
In an effort to further the advocacy and research on POTS, the illustrator and I are donating all proceeds of the book Mommy Can’t Dance to Dysautonomia International a 501(c)(3) non-profit founded by patients, caregivers, physicians and researchers dedicated to assisting people living with various forms of dysautonomia.
While I wish I could write a fairytale ending to my personal story, that is simply not the case. I have found a few medications that have helped, and I continue to pursue additional treatment options through trial and error. Like many others who suffer with chronic illness, I understand that this may be a lifelong condition. However, I refuse to give up or give in, and I hope to someday report that mommy can dance again.
Ever since I was little, I’ve wanted to do two things: be a writer, and work with animals. At one point I wanted to be a vet (even though I don’t particularly like the sight of blood), then I wanted to go into animal conservation. I’ve always loved the idea of working at a zoo. I had these big dreams of all the work with animals that I’d do when I was older. And in my spare time, I’d fulfil my love for writing, creating imaginary worlds where anything was possible.
But, when I was a teenager, I became really ill.
The strange symptoms first started around the age of seventeen, and all my doctors were baffled. Many just wrote me off as “an anxious female”, saying it was really common for teenage girls to faint for no reason. But, when I was nineteen, and after many tests and many doctors, I found out that I had some pretty rare conditions: I’d been born with Ehlers-Danlos Syndrome (a genetic disorder where the body produces faulty collagen) and, because of this, I also had several forms of dysautonomia (autonomic system dysfunction that affects almost every part of the body), including Postural Orthostatic Tachycardia Syndrome, meaning my autonomic system doesn’t work properly every time I’m upright—sitting, standing and walking.
These diagnoses explained a lot of the symptoms I’d been dealing with for the last few years. But knowing that I had these chronic conditions—EDS is genetic; it’s a DNA error—and that a lack of research meant none of them yet had a cure made me worried. I suddenly saw everything in terms of what I couldn’t do. And it was around the age of nineteen that I really understood what this meant, and the impact it would have on my life. With my conditions—the frequency of my fainting, and how my autonomic system no longer works when I’m in an upright position—unsurprisingly, I’m not allowed to drive. It would just be too risky. I don’t always get warning before I faint (and often my faints look like fits), and I get problems with my vision thanks to a lack of oxygen to my brain when I’m upright (sitting, standing, and walking).
But these illnesses also limit the amount of physical work I can do. Every time I’m upright my autonomic system malfunctions, and sometimes, I can barely stand up without getting a heart rate that’s in the 200s even when I’m doing nothing but standing (yeah, my autonomic system really doesn’t work thanks to POTS). I also faint frequently—which can do a lot of damage in itself, if I faint when I’m standing up—and I’m constantly dizzy; even moving my head from side-to-side can trigger an episode of autonomic dysfunction (during which I literally cannot do anything but lie still and wait for it to pass). And that’s not to mention how fragile my joints and muscles are due to the error in my DNA (Ehlers-Danlos Syndrome). I’ve dislocated major joints just walking—which sounds ridiculous given that I used to compete at athletics and cross-country running. But apparently it’s not unusual for those with EDS to be less affected by it when they’re younger, so much so that they don’t realise they have the gene until they get older and start experiencing the symptoms.
Pretty soon after my diagnoses, at the age of nineteen, I realised I most likely wouldn’t be able to work with animals as a career. Not only could I not drive myself to such a place of work, but also I’d probably end up collapsing or fainting after being upright for a little while, and I’d be too nauseated, due to autonomic dysfunction, to do anything. Just a short walk can leave me exhausted, thanks to this condition. And besides, my joints would be dislocating and subluxing the moment I tried to carry anything.
This is where my writing really came in.
Now, don’t get me wrong, I’ve always loved writing. It’s not the case that I got ill and then I started writing. No. I was writing seriously from the age of nine or ten; writing has always been one of my dreams. I had my first short story published at the age of sixteen, and when I was seventeen I completed my first full-length manuscript of 137,000 words. Writing is just part of me. It’s who I am and I have to write. It keeps me sane!
But, realising that I wouldn’t be able to work with animals, and that a lot of jobs would be nearly impossible for me to do in my current state of health, really made me focus on writing. It made me determined to be a successful full-time writer, because writing was one thing that my illnesses hadn’t stopped me from doing.
Even though I’m unwell and unable to move much due to my faulty autonomic system, I can still write. And I can fit my writing around the crazy number of hospital appointments I seem to have most weeks.
I’d always been a voracious reader, but now I read as much as I could get my hands on, and I wrote in every spare minute I had. It was escapism from my illness partly; when I wrote I wasn’t just this sick girl, I was a writer creating amazing worlds and I was living through my characters. But it was also something more. Writing was part of me. I had to do it.
I sent more and more short stories out until I had over fifteen accepted for publication, and then I began concentrating solely on novels. I wrote and then rewrote what I had, countless times. I set myself the goal of writing 2,000 words a day and I soon settled into a routine where I’d try and meet that word count. Some days I managed it. Other days (particularly if I’d had a bad episode, or a hospital appointment) I didn’t.
But I kept writing, determined to write a book that a publisher wanted. With every novel manuscript I wrote, I could see my writing getting stronger. And it was my fourth full-length manuscript that really worked—and four publishers made offers on it.
Aged nineteen, I signed my first book deal.
A year later, my debut novel, Untamed, a dystopian story about addiction, loyalty, and survival released from Prizm Books, the YA imprint of Torquere Press, in both paperback and ebook formats.
By this time, my illnesses were getting worse, and I was struggling to attend even a couple of hours a week at university. I was unwell all the time, and in a near-constant state of presyncope that could (and regularly did) develop into full-on fainting at any moment, as my consultants had yet to find any medications that helped manage my symptoms. I really began relying on my writing. And, it was during my third year at university, after I’d written a new manuscript and signed my second book deal, that I fully realised I wasn’t just a chronically ill person, I was an author as well. Sure, I’d realised I was technically an author during my second year at university, when my debut novel released, but a part of me hadn’t actually believed it then.
But now I realised what I’d done: I’d achieved one of my dreams—arguably my biggest dream—despite being chronically ill. I’d proven to myself that just because I was ill, it didn’t mean I couldn’t achieve anything. I could still be the writer I’d always dreamed of being.
Fast forward to the present day, and I’m 21, and my second novel, Fragmented, is set to release on 7th September 2016. Even though my health is still the same, and my consultants haven’t yet been able to find a way to successfully manage the daily symptoms of my illnesses, I’m currently working on the first drafts of two new manuscripts, as well as editing a third. And last month, I also managed to finish my degree—at the same time as all my friends. I’m pretty sure this was because I had writing to fall back on during those agonising weeks when I thought I’d never manage all the university work. Writing comforted me. And I’m so grateful that writing is one thing I still can do, when there are many things I’ve had to give up (horse riding, athletics, gymnastics, cross country, etc.).
This is why I won’t let my chronic illnesses stop me from being a writer—from being who I am. Because writing gives me an identity, it gives me something to hold onto. I may be chronically ill, but I’m also a writer.
And I have to keep writing.
About Madeline Dyer…
Madeline Dyer lives in the southwest of England, and has a strong love for anything dystopian, ghostly, or paranormal. Her debut novel, Untamed (Prizm Books, May 2015), examines a world in which anyone who has negative emotions is hunted down, and a culture where addiction is encouraged. Madeline’s second novel, Fragmented, is set to release on 7th September 2016, from Prizm Books.
For more information, please check out her website. Follow Madeline on Twitter, Instagram, Pinterest and like her Facebook page to receive the latest information about Madeline’s writing.
Hi! I’m Hannah Reimers. I’m a 24-year-old geek who loves Disney World, penguins, my cat Buttercup and my two pet guinea pigs. I also happen to be a five-year Kidney Transplant Survivor and have recently been diagnosed with several other chronic illnesses, including POTS (Postural Orthostatic Tachycardia Syndrome) and Dysautonomia. As little kids, my brother and I created an entire imaginary world full of pretend friends. Eventually, I became a teenager, and our tales of talking cats and underground lands were literally pushed underneath my bed. When I was fifteen, I was diagnosed with a debilitating kidney disease called FSGS. Struggling with harsh treatments and an uncertain future, I pulled out the dusty stack of papers that described the pretend friends of my preteen years. As I fought for my life, I began reading the imaginary stories I had written as a healthy child. Before long, I started writing again, using my imagination as an escape from the daily monotony of needles, doctor’s appointments, and chemo-like medicine.
In June 2010, only one month after graduating high school, I received a kidney from my amazing cousin. Almost immediately thereafter, I began writing a fictionalized version of my real-life journey. It was incredibly boring, and I felt there was a huge piece missing. In March 2012, I finally came to my senses and realized I couldn’t tell the true story of my life without including the completely fictional stories of The Pretend Friend Association. The ‘PFA’: Part One- Story was published on December 21, 2012. Since then, I’ve published two or three each year. As of March 2016, the first seven books are complete and available for download internationally on Amazon. By December 2017, the series will be complete with twelve books.
A kidney transplant is a wonderful treatment, but it is not a cure; therefore, I will continue to fight FSGS for the rest of my life, even while I’m in remission. I recently discovered that I have been fighting several other chronic illnesses since my diagnosis with FSGS, including POTS (Postural Orthostatic Tachycardia Syndrome), Dysautonomia, and several long-term anti-rejection medication side effects. However, I am incredibly blessed to be an author!
Here is a synopsis of the series:
“There are so many fears that come with being a chronically ill teenager. My most irrational fear was that if I died, my characters would die, too.”
As children, siblings Todd and Anna Grace Shramere created an imaginary world. Guided by nine “Rules of Imagination”, Anna Grace wrote hundreds of stories about a fantastic realm, filled with imaginary friends, secret superheroes, talking stuffed animals, flying cars, and parallel universes.
Several years later, Anna Grace is thrust into the frightening world of hospitals and infusions when she is diagnosed with a potentially life-threatening kidney disease. The sixteen-year-old copes by immersing herself in the fictional stories she wrote as a child. As her health deteriorates, Anna Grace darkens her stories by giving her disease to one of the youngest imaginary characters as well as adding villains and criminals to the once-safe imaginary city. As Anna Grace fights for her life, the fate of the inhabitants of the Underground City hangs in the balance.
A lifetime ago I was a young and energetic (ish) uni student. I studied Surface Pattern Design and had a summer internship set up with Emma Bridgewater. I was going places. I knew my path. It involved graduating from my course and speeding off on my exciting roller coaster of a career. I’d continue to study. I’d travel. I’d make good money and fulfil my dreams.
But life had other plans. My health problems were already there. Though undiagnosed and less severe than today they were already dragging me down. Like lead weights tied to my heels they slowed my progress. Put me forever behind the pack in the race to qualify. But I was determined. I could do this! I would work extra through the summer and take my third year part time. Unfortunately my tutor did not agree. My tutor who also happened to be head of the faculty.
Because I only had a crohns diagnosis she didn’t see how all my other complaints fitted with that. Though I had mountains of doctors notes she felt I had just fobbed off uni. Though, with my allowed extra time, I was on track to pass the year she felt I hadn’t had enough taught time. Her recommendation was repeating the second year and doing the third year part time. I didn’t have enough funding for that. I told her so. I told her I’d have to leave. She stood by her recommendation.
It was then that my life altered. It was the that everything I’d hoped and dreamed of since being tiny crumbled to dust. This was the first major blow dealt to me by my health. The first of many. But this was possibly the one that broke me the most. Not only because it crushed my dreams. Also because my self esteem was shattered. Surely if I had any talent at all my tutor would have fought to keep me on the course? Supported me, as I’d seen her do other students. Not cast me out like last weeks rubbish.
That was almost ten years ago. At the time I believed I picked myself up and carried on, unfazed. But that’s not true. My self belief had taken a huge knock. From that day forward I stopped drawing. I didn’t paint. My sewing machine lay idle and was eventually gotten rid of. Looking back through my social media accounts there’s been many times I’ve sworn I’ll get back into my drawing. My art. But I never did. I remained broken.
Then I started this blog. The first creative thing I’d done in such a long time. Even though I wasn’t writing for anyone in particular it still terrified me. But I ploughed on. A few people seemed to enjoy it, and a friend asked me to share it on her site. (https://www.consciouscrafties.com/) Conscious Crafties is a selling platform for disabled people and their carers. It gives them an outlet for their creativity and helps them to build up their confidence and self worth. Not only did I join the site. I also joined the private group for the Crafties. Being a blogger for the site meant they kindly let me in.
I have to say that being around such a creative group of people has been incredibly therapeutic for me. Their makes are beautiful and inspiring. So inspiring that a few weeks ago I picked up a sketchbook that I’d been given two years before. For the first time in such a long time I sat and I drew. And I enjoyed it! I felt relaxed and at peace. Since then I’ve been to an art master class and enrolled in a life drawing class. Only once a month. But it’s something to look forward to. I’ve drawn more and more and even took some tentative steps into crafting.
I will never be the high flying designer is hoped to be. But thanks to the creative environment I happened upon in Conscious Crafties I’m now starting to enjoy art again. I’m starting to heal.
Here’s a few of my pieces I’ve done and a beautiful key ring which is one of the many items which can be found on Conscious Crafties.
Black ink squid drawn from my daughters animal book.
My first craft.
Pencil sketch of a seal found on google, drawn from my phone.
A friend of mine recently posted about the idea of choosing a word to try and live by rather than doing a New Years resolution. The idea is simple, you choose a word and let that word factor in your approach to life. Or that’s what I took it to mean anyway.
Well, I do generally like to try and make a resolution at New Year, but this year I couldn’t. I didn’t want to put pressure on myself to achieve any set goals when some days I can’t even get out of bed. I did try. I tried to think of easily achievable things. Get dressed every day. Cook a full meal once a week. Go on a date with my husband once a month. But here’s the thing, even those simple mundane things are out of my reach right now. Many days I cannot even get out of bed. So getting dressed is out. (Apparently being dressed in bed is frowned upon.) Cooking a full meal and going on dates. Also Goliath tasks. If there’s one thing worse than having no resolution it’s having an ‘easy’ one and failing at it. Starting the year on a failure was not my idea of empowering.
Therefore I’ve decided to choose a word. My word is KIND.
Why KIND? Well one thing I really struggle with is low self esteem. Particularly in relation to my illness and the limitations it has put on me. But more recently in respect of my looks too. So I want to work on being KIND to myself. On appreciating that life is hard and I’m doing my best. Remember that my best is good enough and that I didn’t choose to be this way. This is not my fault.
I want to be KIND to my body. On good days I don’t want to push it too hard. I don’t want to resent my body for failing me, instead I want to remind myself that my body is still going, despite all its problems, and has given me two beautiful children. When I’m in pain I vow to rest, and try to put myself first.
I want to be KIND about my appearance. Instead of looking in the mirror and seeing a run down lump, I want to see a mother. Instead of seeing my weight I want to see cuddles with my children. Instead of seeing the bags under my eyes I want to see the smile on my face. A smile that still appears even through the worst pain. I want to look in the mirror and start to love myself.
Mostly I want to be KIND about my achievements. I want to recognise those times I do get dressed or cook a meal, and give myself a pat on the back. I want to realise that though I’m not the mother I dreamed of being, I’m the best mother I can be. I want to focus on what I do manage, instead or wracking up my failures and beating myself up with them.
Yes, of course I want to practice kindness towards others too. My husband and kids all deserve kindness. When I’m tired and in pain I will (try to) take a deep breath and calm down before I inevitably snap. I’ll recognise when my tone of voice may be taken aggressively and my words become harsh. At least I’ll try my very best to. But mainly I want to be KIND to myself, because this year I’d like to start believing I deserve it.
Invisible illness. INVISIBLE illness. I N V I S I B L E illness.
Nope. I still don’t get it. How can my illness be invisible? Is it because of my invisible wheelchair that I use on my invisible bad days? Or even on my good days when I need to walk further than a few feet? Maybe it’s due to my invisible lift, and invisible adaptations within my home? Or it could be the invisible hours I spend in hospitals?
No. They’re not invisible. But you don’t get to see them. I hide away at my worst. I put on a smile to hide the pain. I wipe away the tears, and rarely do I share my hospital journey anymore. So is that what makes it invisible?
No. My illness is not invisible. I am not secretly disabled. You, my healthy counterpart, are blinkered. Please, I’m asking you, take off the blinkers. Look closely.
Look at the way my hair is roughly brushed, but not styled. See how I don’t wear makeup, those dark circles under my eyes. Notice the winces and sharp intakes of breath when I move. The stumbles, trips, slurred speech.
See how my life has changed. Where my job and social life has gone. See how my friend circle has reduced. See how rarely I leave the house. How much I desperately want to.
Just look beyond my smile.
Our illness is not invisible. It’s just not quite as easily seen as some other disabilities. But often, we feel invisible. Forgotten. Left behind.
So please. See my disability. See how I’m still desperately trying every day to live around it. But most of all, see me. See us.
Don’t get me wrong, I’m incredibly grateful for the benefits system here in the UK. Without it, I honestly don’t know where I’d be. (Yes I do, on the streets.) But what I hate, is the stigma attached.
So here it is. I’m 29 and I claim benefits. I’m probably never going to work again. At the moment my other half is also claiming benefits. Why? So he can look after me. Previous to that he had a well paid, full time, job. Now he’s stuck with my label of ‘Scrounger’.
Firstly, I’d like to address my husband (and anyone else on carers allowance). I’d like you to adjust your thinking a little here. If my husband wore a uniform and went round to a lovely old dears house five times a week, bringing home a nice little wage, he’d be employed. But because he lives with the person he’s looking after and gets paid by the government he’s a Scrounger? I think not. My partner works just as hard, if not harder, than anyone else. He is here for me 24/7 and the pay is a pittance. Honestly, life would be easier for him if he worked. He’s given up a career he loved, and most of his social life, to do this. So think about that when you assume someone who is a carer has the easy option.
Secondly, there’s me. I don’t work. I can’t work, and I’m not going to apologise for it. Why? Because it’s not my fault. It’s taken me a good few years to appreciate that I cannot control my health. I used to work. I had to leave when it was getting to the point I was collapsing in the workplace and unable to function at home. Even after that point I continued to try. I would volunteer at my daughters school so at least I felt I was giving something back. But one afternoon in school meant the rest of the week in bed. I couldn’t wash or feed myself. I couldn’t look after my child (who incidentally I had before becoming ill, but having a child whilst on benefits is a whole other debate), in order to function I had no choice but to give it up.
So now I don’t work. But, believe you me, it’s no picnic. Yes, I spend many days in bed. But it’s because I’m in incredible pain and sapped of every bit of my energy. Some days I make it out. But even then, with a smile on my face, I’m dizzy and in pain. (Which is best case scenario). Just because I don’t work doesn’t mean I have an easy life. I’d LOVE to work. I went to university. I was supposed to have a career. I wasn’t supposed to be a burden on society. I had a plan!
But the thing is, life happens. Health issues don’t care about your plans. So please, have compassion for those of us in genuine need of benefits. I can guarantee you won’t think worse of us than we have of ourselves. I wouldn’t wish my problems on anyone, but remember, disability can happen to anyone. Even people who think everyone on benefits are scrounging scum.
One of my conditions is POTS. It stands for Postural Orthostatic Tachycardia Syndrome. Even though there’s thousands of us POTSies out there, it’s still a relatively unknown condition that’s difficult to diagnose.
If you have a friend or relative with POTS you may choose to do some online research on their condition so you can better support them. (Big round of applause for caring if you do!) This is a lovely gesture, but please, only do this in order to learn. Remember we are all different, we often have intermingling conditions, and we have already tried EVERYTHING imaginable to get better. We don’t need Dr Google giving us unsolicited advice. Compassion, understanding and company is always welcomed though.
It’s the idea of understanding that’s prompted this post. Often I see POTS described as ‘an increase in heart rate of 30bpm on standing’, which is true. But it is oh so much more. Better articles will explain that living with POTS is akin to living with heart failure in the effect it has on your body. This is a little better at describing life for me. But unless you’ve lived with heart failure (which I hope you haven’t) you’re still not going to know how that feels.
So I thought I’d try to describe how POTS feels to me. Please bare in mind I have LOTS of random stuff wrong with me, so I apologise if not all the stuff I talk about strictly fits with POTS. It’s hard figuring out which ailment goes with which condition these days.
So first, the heart rate. Yes it increases when I stand, often reaching 154 and above. This isn’t bad for many people with my condition, who can go much higher. Luckily I’m not affected when seated, so I can still drive. When your heart is racing it feels like fluttering in your chest. But not sweet little butterflies, noooooo. When my heart races it’s like I’ve got a giant ass albatross in there! Soon, as my heart is going so fast, I start to get dizzy and lightheaded. My head and feet don’t seem to be part of the same body, and I’m almost detached from myself. This makes me clumsy and I often look drunk when walking, or I stumble and trip. One of my talents is tripping over nothing, the other is walking into things. Door frames, furniture, people, anything is fair game.
After being upright for a very short time (often immediately on standing) my body feels like it has lead weights attached, trying to drag me to the ground. Everything is heavy and I’m walking through waist high mud. My energy is sapped as it takes so much (three times to be precise) more to do anything. It’s at this point I’m usually clinging on to someone or something for dear life. If I’m not seated (or preferably laid down) in time, then my body will give out on me.
I’ve been told all the colour drains from my face and I crumple to the ground like a puppet that’s had its strings cut. What I know is all of a sudden the world shifts. Dark engulfs my vision and I can no longer keep tension in any part of my body. I used to think I remained alert, but having not realised a woman was screaming when my head connected with the floor in a local supermarket, I now appreciate that’s not the case. As the world swims back into focus its at that point the pain hits. Let me tell you something, floors are hard!! Pavement diving is not a sport Id partake I given a choice! I lie there, usually crying (I’m not sure why as I’m not upset) and shivering uncontrollably. I can’t sit up too fast or I’ll go again. But when I do, I feel as though I’ve been run over by a freight train for the rest of the day. I usually also end up with whiplash and sprains due to my other joint condition.
However, this isn’t the whole story. My condition causes my body to constantly be in ‘fight or flight’ mode. My autonomic nervous system (the one that controls everything you automatically do such as digesting, regulating temperature, circulating blood) is constantly on high alert. I am the human version of bambi in the woods. Because my body is constantly thinking danger is on the way it does some really stupid things. It sends blood away from my none vital organs, like my digestive system (because according to nature food is not vital, stupid nature) leaving them slow and sluggish. Or sometimes way way way too fast. Which is always fun. My thermostat is always off, so I’m either too hot, or freezing. Or, if I’m really lucky, both at once. My blood pools in my hands and feet, making pain I already get there, worse. Plus it turns them a rather fetching shade of purple. Then, as well as completely exhausting me, my lovely body won’t let me sleep. After all, could you sleep if your body was in constant high alert, waiting for a wooly mammoth to attack? (Fight or flight mode is a throw back from when we were cavemen.) I’ll give you a hint, the answer is no. No you couldn’t. You’d just toss and turn in bed, sweating one minute, freezing the next, and every now and again twitching for good measure. Just because.
So that’s the bulk of it. I know there’s so much I’ve missed out, but my eyes are struggling to focus (that’s a lovely symptom right there) and my hands are hurting. I hope that my description has helped you imagine what it’s like for us a little better. Maybe next time your friend with POTS is being cranky (me every day) or boring (again me) you’ll find it a bit easier to be understanding.
Life changes when your health deteriorates. Suddenly you’re no longer living on your own schedule anymore. Every aspect of your life beats to the tune of someone (or something) else’s drum.
I used to choose what I did with my time, how many hours I worked, if and when I socialised, what activities I did to fill my time. (Because in those days time was something to be filled with limitless and varied options.) Yes I still had exhaustion and pain, but nowhere near the life sapping amount I have these days.
But now? Well, let’s just say, things have changed. My health decided to strip me of my energy, and my ability to work. With that went my social life, which doesn’t matter as I don’t have the energy for it anyway. Finally those time filling activities, they went out the window too. I’m sure you can guess the culprit.
So now I wait.
I wait for doctors appointments. I wait for tests. I wait for the results of those tests, so I can wait for doctors to decide what they want to do next. I wait for medications to work into my system, I wait to wean off other medications. (It’s an ever changing cocktail.) I wait for pain killers to kick in. I wait for my body to let me sleep. I wait for my husband to realise he can do better. I wait for my daughter to wish she had a fun mummy. I wait for the summer when my joints ache less. Then I wait for the winter when I’m less likely to collapse.
Everything is waiting. My life is waiting. Waiting for a miracle so I can ‘get better’ from my list of incurable chronic ailments.
I know what you’re thinking. Wow, that’s depressing!! Well yes. For a very long time it was. In fact, sometimes it still is. But luckily my husband assures me he will never get sick of me. My daughter (and step son) fill my days with smiles, stories, cuddles and laughter. My pets provide companionship whilst I’m stuck in bed. My few friends that remain are loyal and understanding. My new friends from various medical support groups are loving and funny. My good days are spent making the most of them as best I can with the people I love.
So I wait. But whilst I wait, I live. It may not be the life you have, or the life I expected. But it’s the life I have now, surrounded by the loving family I’ve created, who have stuck by me through the toughest of times. I’m happy with that.
“Wow! I feel so refreshed after that shower!” said no person with POTS, ever. Showering is not a relaxing pastime. Nor is it ever possible to have a ‘quick shower’ with POTS, so let’s forget that idea right off the bat. Showers take time, preparation and energy. Lots and lots of energy. You have to ask yourself, do I REALLY need this shower? Am I going to be in close proximity to other human beings? Will a GP or member of the opposite sex be poking around anywhere? Am I 100% sure I can no longer get away with wet wipes and dry shampoo? If the answer to any of those is NO, hold off on the shower.
Next ask yourself, do I have the energy? Do I have the time? Am I well enough? Again, if the answer to any of these is NO then leave the shower. It’s not worth the risk. Wet wipe, dry shampoo, deodorise, and pray to whichever God you prefer that you don’t smell too bad.
So the stars have aligned and everything has fallen into place, today is the day! You will be clean!!
First things first, the prep. I try and lie down for a rest before my shower, in preparation for the ordeal to come. Also I hydrate and make sure I’m in the middle of my midodrine dose, optimum time for exertion. If I’m feeling particularly with it I’ll strip off while laid on the bed. If not I end up teetering on the side of the bath, desperately trying not to lose my balance whilst removing my two pairs (minimum) of socks.
Suitably undressed it’s time to hop on in the shower!! (Because it’s just that simple, NOT) Hold on to anything and everything. Ideally a handle. But if not use the sink or a handily placed husband or partner. Whatever you do DO NOT grab onto the shower door. This will end in your naked wet body hitting the floor at speed.
You’re in!! Woop woop!! If you’re lucky you will have a shower chair. I, unfortunately, am not lucky. My shower is over the bath and there is no chair that will fit. If at all humanly possible I will stand in the shower. However, if I’ve ignored my own advice and pushed myself to shower when I shouldn’t, I often end up sat in the bath with the shower over me. This often makes me shiver uncontrollably as my legs are out in the cold air and not under the nice warm water. Fun times!
Notice I said warm. Not hot. Hot showers are things I dream of. They’re like a paradise just out of my reach. I can’t do hot showers anymore, my body punishes me with hives and syncope if I try.
Ok, so you’re finally in the shower. It’s about this point I usually need to pee. Do I really want to go through the rigmarole of getting out of this bloody shower?? I’ll let you answer that one.
Now it’s time to wash. First things first, let’s get the hair out of the way. Get your shampoo, try not to swear too much when you drop it (again), if possible use your handily placed husband to pick it up for you. Otherwise, try and have several shampoo and soap options, so if you drop one, or five, you aren’t having to bend down to get them. Wash your hair as quickly as possible as raising your arms is not only painful, but induces your symptoms. As the soap washes down your body swoosh it about in order to give everywhere else a clean. Grab your razor and go to town on those arm pits. Consider, for a millisecond, shaving other places. Then sigh and realise you’re done. Your energy ran low about the point you got undressed, and now you’re running on empty. Maybe next time?
Shaking uncontrollably grab onto the sink, your husband, anything. Keep a tight hold onto everything at this point, everything except your dignity. There’s no place for dignity with POTS. We laugh in the face of dignity! Stumble, clamour or crawl towards your bed. Preferably wrapped in a towel, but don’t fret if that’s too much effort. You’re in your own home, a bit of nakedness is fine!
Finally you made it! You’re freezing and wet, but you’re clean!! Congratulate yourself as you collapse on the bed and rest, whilst contemplating if you can cancel your plans. Because now you’ve showered your done!
What about drying yourself, you ask? I just peed in the shower and didn’t bother to shave my legs (again), do you honestly think I’m gonna dry myself when the air will take care of that for me?! Nope… Besides, the ‘just dragged through a hedge backwards’ look suits me.
Hi everyone! My names Jennie and I’m a 29 year old mum with several chronic and debilitating conditions. I’d like to share with you what life is like for those unnoticed disabled. People like me who struggle on a daily basis, but look fine on the surface. Hopefully through blogs like mine, and others, we can spread awareness and gain a little understanding.
So, I’m disabled. You wouldn’t think it to look at me, but I am. It’s a cruel joke that one of my conditions actually genetically predisposes me to look young and healthy, whilst internally I have the body of a seventy eight year old. (That’s a direct quote from a doctor.) Sometimes it’s nice to look normal. To slap on a smile and pretend to be just like everyone else. But mostly it’s hard, and exhausting. So very exhausting.
Imagine spending every day carrying a tonne of bricks on your back. They’re heavy. They grind you down. Your body creaks and aches from the weight of them. You never get to remove your load, not even to sleep, so even lying down the sharp edges jab into your already battered body. Sleep is impossible. Surely someone will help you? Nobody would let you struggle through life that way?? The problem is, your bricks are invisible. None but you can see them. So how can people help? They see you shuffling and stumbling from the weight, to them you’re just another young drunk. On busses and trains they hog seats, not knowing you’re ready to crumple. Your exhaustion, they say, can be cured with a little rest and some good sleep, a better mental attitude. As for your bricks? Well, surely they can’t exist. If people can’t see them, they can’t be there.
People soon stop attempting sympathy. Friends don’t call anymore. Whispers start about how all you seem to think about is the burden your bricks have on your life. Soon, your bricks have taken everything from you.
This is life with an invisible illness. Please, I implore you, if you know anyone with an invisible illness, help them carry their load. It means everything just to have a hand to hold on this hard journey.
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