I’m lucky to be a carer for two amazing people!!! My son and my Mum!
My son was diagnosed with Aspergers/ High functioning Autism, at age 7. We have had a tough old road, now he is 17, done his GCSE’s and is now at college! Safe to say I am one proud Mum!
In May 2015 I became carer for my Mum. She has chronic Arthritis both Rheumatoid and Osteo, which means she needs lots of help. She had to take early retirement and move in with me and my son.
I took up embroidery and cross stitch originally to do something creative.
Its helps take my mind off our crazy merry go round life of hospital appointments, meetings, therapy and general house stuff.
I suffer with Depression and PTSD, due to a previous abusive relationship. So stitching helps and keeps me sane, or not as the case may be 🙂
Autism spectrum hoodie
For a long time I had thought about running my own business, but just didn’t know what to do. One day Mum saw and advert for a embroidery machine, “you could do that!” she said. So, along came this huge machine which initially I was terrified of! (I had only done hand embroidery up to that point!!). Luckily my computer whizz and all things technical son came to the rescue!
I had had the machine for a month and just looked at it in awe! Half term was all that was needed, by the end of the week he had machine embroidery sussed, taught me and so my learning curve began!
Eventually after several months I braved it and in January of this year (2016) I jumped in. Mum and my boy love the things I make and look forward to seeing the new designs and products, Mum especially as she gets to keep the seconds!
So, here I am, self-employed and loving every minute!
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.
I’ve always loved finding about about myself. I was a shy child with hardly any dress sense (though very sensitive to irritating clothes). I matured late, have always been something of a tomboy and absolutely love stories, be it in books, in films or making them up with friends.
I had a career as a professional modelmaker and another in preschool education as a Montessori Directress. Unfortunately, despite however much I loved what I did, I could never seem to physically do it for long. There was an invisible barrier that I kept hitting time and again.
I look back and wonder how I managed to do what I did? With the companionship of a loving partner that I’ve known since our college days, a wonderful family and finding my creative outlet in Live Roleplaying for twenty years. I learned Reiki to cope with stress and became a Reiki Teacher.
A few years ago though, a cascade of symptoms began. Dizziness, fatigue, clumsiness, odd sensations…the list went on. It took three years to reach the root of all my problems – even ones from my childhood and young adult life finally got explained.
At first, I thought it was MS. It looked ever so much like it but the MRI said ‘within normal limits’ and the Neurologist said ‘Functional Neurological Disorder’. What’s that? In a nutshell, symptoms without a clearly discernable cause. Go to FNDHope to learn more.
After that, it was Chronic Fatigue Syndrome, for which I did a very good OT led therapy course and made a group of friends. We still meet up when we can. Generalised Anxiety Disorder along with historical (i.e. in childhood) Social Anxiety Disorder was diagnosed next.
Eventually, a trip to orthotics to get some new insoles that I’d been prescribed after the weight of pregnancy left my feet a funny shape, led to me being told – for the first time in my life – that I was hypermobile. Sure, Yoga and Tai Chi teachers had remarked on my flexibility and I just took it as a compliment, a positive trait. I had no idea…
The slew of symptoms kept increasing, my mobility kept decreasing, my cognitive abilities kept glitching and I had to know why. So, I chatted on forums. I researched. I looked for the right words to craft the best questions to present to my GP. I printed out information and asked his opinion. My ferreting of information and determination to know what my body was up to finally led me, at the age of 41, to get a confirmed diagnosis of EDS (Ehlers-Danlos Syndrome). That in turn led to a realisation that I just might be autistic (my doc said “Oh gosh, yes!” when I asked if I might have Asperger’s). I’m still waiting on that one.
So, in the past eight years I have survived a perilous labour (though sadly, my womb did not), become a proud mum, started two online shops, closed a Reiki Practice, gained clarity about my orientation (still happily with my college heartthrob though) and transitioned from able-bodied to disabled. I now do the school-run on two Smartcrutches with braces or my mobility scooter.
This is the real me. I love making jewellery but rarely wear it. I only dress up to do LRP or Steampunk and usually have a less mature hairdo than my now 7 year old. I love making friends but need plenty of solitude. I’m happy to offer my experience to others in the hope that they might find it helpful. Above all and quite aptly, I’m a Conscious Craftie. ♡
*** I don’t know how this post is going to go. But I would say reader discretion is advised. ***
As many of you know I’m struggling with the symptoms of a prolapse. In fact, when I saw my surgeons for the results of my Proctogram their exact words were that ‘everything is coming down’. I do hope to share my story at various stages, and was intending to share my experience of that appointment. This is not that post.
But that appointment does play a part. You see it culminated in the surgeon I’d never met before telling me I would be fitted with a pessary. I told him I didn’t want this. I’d been told I’d need surgery. I stuck up for myself. But no. He thought a pessary was the way forward, and that’s what was to be done.
Ordinarily in this situation I’d feel disgruntled to say the least. Royally pi**ed off would be a more accurate description of my feelings when doctors steamroll me into things. This time I didn’t. This time was different. This time I was devastated. Completely and utterly devastated. I felt something inside me well up. Something I hadn’t felt for many many years. Something which I wasn’t ready for.
I told myself it was disappointment. I’d been hoping for a surgical fix. But yet again I had landed myself with a condition to be ‘managed’ rather than cured. Something that would need long term treatment rather than an end date, a fix. I lamented this fact to my husband. He was sympathetic, but also confused. This was a none surgical option, surely that was better? He had a point. So I saw my GP. I asked questions. I looked at diagrams. I researched.
The results were good. The pessary was less invasive. No recovery time. I may be able to cope with it for a long time and only need smaller surgery. The side effects were minimal. If it didn’t suit then surgery was still an option. I even spoke to women with a pessary. The feedback I received was overwhelmingly positive. I feel I need to point out that for many women the pessary would be a wonderful option.
But not for me.
For a while there I put it to the back of my mind. Then my letter arrived. My letter with the info on the pessary. My letter stating I would have my appointment for a pessary fitting ‘in due course’. I read that letter and I sobbed. I cried long forgotten tears. Once I started I just couldn’t stop. I think I sobbed all night that night. Quietly in bed. My back to my sleeping husband and wonderful baby. I broke my heart time and time again.
Eventually, in the dark, I picked up my phone and emailed my ‘nice’ surgeons Secratary. I wrote the words I wasn’t ready to speak. I wrote the words that I didn’t even realise had been the problem. I spoke of a tragedy I thought I’d long since got over. I wrote and I hoped. I hoped for understanding. I hoped for compassion. I hoped for a new option.
Soon after I saw my GP for an unrelated issue. He innocently enquired if I’d had my prolapse appointment yet. I think he was surprised when I broke down into a puddle of tears in his office. He almost cried himself when the words came tumbling out.
FOURTEEN. VIRGIN. RAPE. VIOLATED.
It was at that point I knew 100% I could not have the pessary. I could not, and would not, force myself to go through all those emotions again. After so many years of counselling, healing, regression and then finally progress, I wasn’t going to step back into the dark. My demons have been long locked away. I thought I’d got rid of them altogether. Clearly not. Clearly they still exhist in the darkest depths of me. But that is where I intend them to stay.
I feel weak. I felt pathetic. I felt downright stupid for allowing something from so long ago to affect my health today. But my GP didn’t. He understood. He understood that childhood trauma becomes engrained in your soul.
I was a child. Until that day in my GP office I’d never seen it like that. At fourteen I’d felt like a grown up. I was independent. Strong. Fearless. But now, fifteen years later, I finally see I was a child. That was a hard pill to swallow.
So that’s where I am now. My GP has written to my surgeon stating he feels the pessary is not an option for me. My truth is out there, and now I’ve scared it with you.
Don’t get me wrong, it’s still hard. I’m still struggling. I’ve dredged up a part of my past I never wanted to face again. But I’m glad I spoke those words. Because had I not I know I’d of ended up being railroaded into something that just wasn’t right. Not for me. And now I have a doctor to vouch for that.
So ladies, and gents, if you have a past experience that still impacts you today. Something you dare not speak of. Something which affects the way you may view medical examinations or treatment. I implore you, find someone you trust and let them know. Because they can and will help.
Search
This website uses cookies to improve your experience. We'll assume you're ok with this, but you can opt-out if you wish.AcceptRejectRead More
Privacy & Cookies Policy
Privacy Overview
This website uses cookies to improve your experience while you navigate through the website. Out of these cookies, the cookies that are categorized as necessary are stored on your browser as they are as essential for the working of basic functionalities of the website. We also use third-party cookies that help us analyze and understand how you use this website. These cookies will be stored in your browser only with your consent. You also have the option to opt-out of these cookies. But opting out of some of these cookies may have an effect on your browsing experience.
Necessary cookies are absolutely essential for the website to function properly. This category only includes cookies that ensures basic functionalities and security features of the website. These cookies do not store any personal information.
Available to buy via Amazon 
