Category: Spondylosis

Mommy Can't Dance book - Help children understand Chronic Illness, Katie Carone

Here’s my story (reposted from My Website Mommy Can’t Dance)

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 — 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:

Available to buy via Amazon Paperback or Kindle.

For UK orders BUY BOOK here

For USA orders BUY BOOK here

CreateSpace Store
Support Dysautonomia International

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.

http://www.dysautonomiainternational.org/

Happy Endings?

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.

As a young man I trained for 5 years as a Ladies and Gents hairstylist in Leicester. My hobbies were fishing and Martial arts, i studied the Chinese martial art of Gung Fu and attained a black belt 3rd dan. After a few years I found myself working in Germany which I loved and my wife and children all joined me for a few years. It was on one of the journey’s to Germany that I first became aware of my neck problem, suffering terrific muscle spasms in my neck and shoulders, this continued for many years and the pain levels grew, on our return to England I had many hospital appointments, a CT scan and the diagnosis was “hot spots and irregularities in the C spine” (they gave really detailed diagnosis in the 70’s!). My problem was later diagnosed as Spondylosis or Spondylitis i can’t recall which! I was given Tramadol an opiate based pain killer and other pain relief which helped but did not take away all of the pain.

As the years went by the pain became stronger and ever present as it still is today, I recall myself sitting and crying in pain with my wife’s arms around me on many an evening after I finished work. By this time I had started two new companies away from hairdressing, one a Private Detective Agency the other a Security Company and was working 14/16 hours a day, fortunately I must have a strong constitution as I was always able to go to work and work through or in spite of the pain.

Dog Pastel Portrait, PetsPortraits4u — Dog Pastel Portrait
PetsPortraits4u

I spent several thousands of pounds over the years looking for alternative pain relief, having tried all the obvious, I went for energy healing and did find some relief and at about this time I also found a magic masseuse called Suzanne who like many are, was not afraid to go in deep, she was able to break up the tightly knotted muscles in my neck and shoulder after about a year of weekly visits, this allowed me to actually turn my neck a little from side to side after many years of not being able to, over the next few years my pain slowly went down a rung or two thanks to the healing and the marvellous masseuse I had found.
Having had “some relief” from pain for the first time in many many years I though that I could perhaps also help others that suffered with chronic pain and trained in Tera Mai Reiki Seichem becoming a Tera Mai Reiki Seichem Master and also as a Reconnective healing practitioner, through which I was over the years, able to give relief to many other chronic pain sufferers (but not myself!) mainly using Reconnective Healing energies which seemed more effective than Reiki.

Cat Pastel Portrait, PetsPortraits4u — Cat Pastel Portrait
PetsPortraits4u

In my retirement and still in pain 24/7 (and still something of a workaholic!) I caught up with an old school friend on friends reunited, she told me that she had MS of which I knew nothing, some years after this her husband passed away and some months later I was reasonably close to North Wales and arranged to meet with my friend from my school days for a meal, we got on well and I began to learn a little about MS. I started to visit her to help out on occasional weekends and at times when she had multiple medical appointments and seeing what she went through to be able to carry out the simplest little task really had me in awe of her single minded determination, the help visits became more regular and now I am her main carer, staying for perhaps a couple of weeks, enabling her to do the things she enjoys and get regular exercise sessions at the gym, then having a few days break before beginning again.

My friend actually classes herself as lucky, because although she has MS she suffers no pain, lots of other difficulties but no pain for which she is very grateful (but how anyone with MS can consider themselves lucky I don’t know) she has lost the use of her left arm and left leg, and struggles to manage even the simplest task, she has been a yoga teacher for over 30 years and still teaches from her wheel chair having adapted many exercises for chair bound people, she has taken over 700 yoga classes at the Neuro Therapy Centre near Chester and does everything she can to enable her to live an ordinary life. My heart often goes out to her as I see her struggle with a task, but I have now learnt the things that I must let her do herself despite how long it takes her or how difficult it is for her, it’s hard to watch sometimes knowing that I can do it for her, but she needs to do it herself, that was the most difficult thing for me to learn as a carer.

Horse Pastel Portrait, PetsPortraits4u — Horse Pastel Portrait
PetsPortraits4u

I find it very rewarding that I am now able to make life an awful lot easier for her, and enable her to live a normal (ish) life. I have free run of the kitchen which is great! I’m even allowed to do the washing up, although she says she occasionally has to re wash items!! It’s a man thing how we just leave an item with a stain or tiny bit of food on that a woman’s radar spots from 100 yards and we can’t see from six inches!

Anyway I have missed a bit out as before re meeting with my friend after many years, my masseuse told me on several occasions to ask my Doctor to test me for Fibromyalgia, when I finally got round to it I was given a positive diagnosis which explains all of the additional pain I have been getting over the last few years and the horrible tiredness and lack of energy, waking up feeling like a soggy sack, trying to remember what was a dream that you thought you had. It’s known as ‘Fibro Fog’ which is really weird sometimes, so caring for my friend although very difficult at times (as she really does not understand what pain is and why I can be so down and useless one day and ok another!) but it keeps me busy and I get an awful lot of satisfaction from being able to make her life easier, despite having lost the use of her left leg and arm she is always happy, cheerful and smiling. I find it amazing the way she copes with her disability and (most days) really enjoy being there for her.

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Why Mommy Can’t Dance

From Private Detective to Carer and Artist