Growing Pain

My cautionary tale…the doctor is NOT always right!

I cannot even remember the last time I didn’t wake up in physical pain.

For it all began in my early childhood, years before this young photo was even taken. I believe I was eight years old here sitting in the wheelchair.

Tragically, my body is now irreparably damaged because of incorrect medical treatment. My long-standing suffering all completely unnecessary.

I have to live in pain everyday as an adult with the knowledge that it never had to be this way…

The doctors got it wrong and now I have to live with their mistakes forever.

So, what was this terrible childhood affliction that needed such urgent medical intervention and years of traumatic hospital procedures?

…I simply walked on my tip toes.

Yep, that’s all!

My embarrassed parents didn’t like the fact I didn’t look or walk ‘normally’. I was sadly not the perfect, pretty daughter they had hoped for. Despite me being in no pain at all or it affecting my mobility in anyway, my parents were still determined that I needed to be ‘fixed’.

I practically lived in the paediatric orthopaedic department at the hospital growing up. When I wasn’t being fitted with ugly specialist shoes or leg braces, I was put through years and repeated cycles of being made to walk in the most uncomfortable fibreglass casts that were set up to my knees to try to force me to walk ‘correctly’.

I feel like my childhood and innocence were stolen from me. I just wanted to play freely and happily like all the other children around me. I wanted to have fun and experience the joy of climbing trees, riding a bike or going swimming. I wasn’t even allowed to have a simple bath growing up as my leg casts couldn’t get wet!

I vividly remember hysterically crying and begging my parents for them to be taken off. I was just told that ‘it was all for my own good.’

I barely attended any primary school. The Disability Discrimination Act or inclusion rules were not in place back then so the school were not prepared to have me in full-time. I was told I was a health risk and they didn’t have the funds or staff to look after me.

My parents state that they had no choice but to follow the doctors instructions, you always have to trust the experts of course! Apparently they were told I would end up in a wheelchair indefinitely if they didn’t agree for me to have major surgery.

So that needless and avoidable operation went ahead.

I was eight years old when the surgeon cut both my Achilles tendons in an attempt to stretch and lengthen them to stop my tip toe walking.

These internet photos of the procedure alone should give you an idea of the risk and severity of the surgery. I apologise if you are squeamish.

It is an extremely painful operation involving major trauma to the tissues leaving large scarring. After the general anaesthetic, I was required to stay a week in hospital. It was then six weeks in plaster casts with limited mobility plus a six month recovery time where I effectively had to try and learn how to walk again myself.

There was little focus on physiotherapy back then or rehabilitation. I wasn’t taught the importance of stretching or exercising afterwords in childhood. After cutting me open, I was basically left to my own devices.

So what happened when I could finally walk again over half a year later…was it a success?

No…

The complete opposite!

I immediately reverted straight back onto my toes.

The specialists were left baffled by why the surgery had been such a out-and-out failure. So after many years of painful procedures and physically butchering my ankles, the professionals finally agreed nothing more could be done for me at ten years old. My parents would have to learn to accept that I could not be ‘cured’.

It wasn’t until over twenty later after my own children were born that I would finally find out why the surgery never worked.

Both my sons experienced extreme developmental delays and behavioural problems growing up. They were not able to attend any mainstream settings and went to specialist nurseries. They had significant issues with their motor, social and communication skills. Coincidentally, most people noticed that my eldest son Jacob walked severely on his tip toes, worsening when he was anxious or excited.

Both my boys were diagnosed with Autism Spectrum Disorder at two and a half years old after lots of different testing in order to rule out other genetic conditions. It was at that point that I started to make the connection between tip toe walking and autism. Please note though, not all autistic people walk on their toes but it is certainly more common in children who are diagnosed.

I then started to research autism in depth and soon realised how many traits and signs I had myself. I had always managed to mask many of my symptoms for the most part. That was until my mental health deteriorated badly with the stress of caring for two non-verbal special needs children with little to no support.

I was eventually diagnosed with autism myself at 35. With so many obvious textbook symptoms, it seems unbelievable to me it now that it was never picked up or even mentioned as a possibility growing up.

Yet little was known about it back then and most consultants had limited understanding of the condition, particularly in relation to the tip toe walking connection. My parents didn’t ever consider a diagnosis and it was never discussed by any professionals. Certainly serves as evidence to show that doctors don’t know everything! There is always more knowledge out there to learn and new medical and scientific advancements yet to happen.

I don’t believe there was anything ever physically wrong with my muscles or legs. So the operation was a complete waste of time and could have never worked for me sadly. I believe my tip toe waking was psychological and a sensory need linked to my autism and my vestibular and proprioceptive system. The habit to stand/walk on my toes is related to my intense emotions plus a want for feedback and stimulation.

Most higher-functioning autistic children will grow out of out of their tip toe walking as they get older as they gain more awareness and understanding of their condition and are able to use other coping mechanisms to calm and soothe themselves.

It still gets pointed out to me as an adult now that I revert back to walking on my toes when I’m particularly excited or stressed out but I did learn to walk myself ‘normally’ flat-footed as a teenager without the need for any medical intervention or procedures.

I am now teaching my eldest son Jacob to do the same. I refuse to put him through the same years of hospital torture that I had to endure as a child. I also teach both my children to celebrate difference and not to worry if they are not the same as other people around them.

The damage to my body became increasingly noticeable after I finished my education. I struggled to do any retail work as I couldn’t stand for long periods without pain and swelling and I would easily get injured anytime I tried to do any simple exercise.

I was diagnosed with both chronic plantar fasciitis in my feet and Achilles tendonitis in my ankles in my early twenties. My tension headaches and back pain also started then too where I could spend days in bed in agony caused by extreme tightness and spasms in all the muscles running down my back from head to foot. My pain level increased with age sadly.

I’m paraphrasing here but a consultant once explained to me, ‘muscles are a bit like elastic bands, they should have some give in them and can be stretched easily. Yours are already pulled extremely taut and rigid after the operation in your legs leaving you prone to tears, injury and inflammation to your muscles.’

I did get a short reprieve from my long-standing pain when my muscles relaxed in my pregnancies because of the hormone changes but that was short-lived of course.

I have spent thousands on private therapy and on different gadgets and activities to try make me physically better. Each failed attempt used to make me feel more despondent but I now finally accept that I have no choice but to learn to adapt and manage my pain levels and limited mobility as an adult moving forwards.

Wearing shoes has often been too difficult for large periods of my life so I have spent years in unattractive, supportive sandals to help my ankle pain. The ‘socks and sandals look’ in the winter does draw a lot of attention and questions about whether I’m trying to make a interesting fashion statement! Sometimes I’ve felt so embarrassed by my footwear, it was easier to hide myself away in the safety of my own home rather than go out and face the world.

That inactivity would only worsen my problems unfortunately.

I have to confess to not helping myself over the years too. I have relied on alcohol too much to temporarily loosen my muscles and mask my pain to go out in the evenings. The accompanying depression has meant I haven’t engaged in enough exercise or my stretching plans either.

I took these two photos to highlight the scarring in my ankles. The swelling gets worse with any walking or standing on them. I have to heat, ice and elevate them everyday to ease the symptoms.

The top photo is of my youngest teenage son Sam. He is obviously much younger and slimmer than me but he doesn’t have any mobility issues himself and is the same height and shoe size as me. I think the visual still works as a useful comparison to show the main differences.

In the last year, a sharp pain has started in both my knees too when weight-bearing. Not a huge surprise after years of overcompensating for my feet and ankle pain.

I’m forty years old and now determined to fight and gain some confidence and mobility back again. Despite the pain in my legs and the regular tension headaches I suffer with, I am motivated to push myself to be as active as I can be and try and improve my circumstances. I know my pain will only carry on getting worse if I don’t try to increase my exercise levels now.

I know I’m never going to be running a marathon but I recently found some trainers I can wear for short periods. I’m managing to go walking most days and I attend a beginners pilates class. The exercises have to be adapted for me there plus its necessary to ice and rest my feet every evening after my walking but it’s a huge step in the right direction and imperative for my mental health too.

I haven’t previously mentioned my mobility issues much online as I try my best not to live with a victim mentality. I so desperately wish they never operated on my ankles but I make the best of it now and I practice grateful for all the other positive things I am lucky to have in my life.

I hope I have been able to spread some awareness of the dangers of always blindly trusting in professionals or authority by sharing my story here. I just want others to know that the doctors aren’t always the experts and right about everything.

It’s so important to practice critical thinking, to do your own research and to question and challenge everything you are told.

We have also sadly seen this recently during the Covid lockdowns and growing vaccine injury list…the cure can be much worse than the problem!

I will never give up that slim hope of a health breakthrough or improved mobility for myself. In the meantime, I will carry on battling on and managing my pain as best I can.

As always, never surrender! x