Our story begins on September 1st 2012. The day started much like any other, with Sonia heading off to work at a well known frozen food store. Sonia was a busy lady, holding down a hectic job and being mum to her beautiful children. Days whizzed by in a blur of work, cooking, cleaning, love and laughter. But on that day, as Sonia took off her shoes after work, something halted her in her tracks. 

Sonia enjoying her birthday with her workmates.

On the side of her foot was a lump. Something she hadn’t noticed before, and was concerned enough to visit her doctor about. An ultrasound scan revealed the lump to be some form of tumour, that originated at Sonia’s ankle. When within a week the tumour more than tripled in size the doctor decided it best to have it removed. Surgery was scheduled. It was to be a simple routine procedure. The tumour was a none cancerous ganglion and there was nothing to worry about. 

Little did Sonia know that this procedure would change her life so completely. 

September 17th, surgery day. As soon as the anaesthetic wore off Sonia knew something was amiss. 

My foot was on fire, and yet it was as cold as ice! – Sonia

She needed to get the bandages off, she couldn’t stand the pain a second longer! Almost immediately her foot swelled to such and extent that the brand new stitches burst, leaving her with a gruesome open wound! Of course she headed back to the doctors for the first of many visits. The wound was washed and cared for, helped to heal. But still the pain persisted. Nobody knew what was wrong. Doctors were left scratching their heads. Within a month Sonia was unable to move her toes at all from the unexplained pain. 

Two weeks and three days after surgery Sonia’s still swollen foot and open wound was still nowhere near healed.

Fast forward eight months and Sonia was finally given some answers after seeking help from a specialist. It was CRPS – Complex Regional Pain Syndrome. Not only that, but she had CRPS Type 2. The type that, unlike type 1, does not go into remission. 

Complex Regional Pain Syndrome Type 2 (CRPS Type 2) is a severely painful response to a peripheral nerve injury. CRPS Type 2 is characterized by severe, burning pain affecting a specific area as a result of the nerve injury. RSDguide.com

Not one to take things lying down Sonia immediately hit the Internet. Desperately trying to find information about this new hurdle that had blocked her path in life. Surely there was something she could do?  But everything she could find described Type 1. What little there was about the type she was suffering was sparse and often ill informed. So, as the doctors prescribed her with drug after drug to try and help her symptoms, Sonia began to write. She wrote page after page of diaries. Her symptoms, her moods, her feelings. Anything and everything in the hope it could one day help someone. 

The CRPS caused Sonia to feel she had completely lost who she once was. Known as the ‘Suicide disease’; the pain often left her wishing she hadn’t woken up that morning. Life just became too much and it wasn’t long before Sonia was unable to work. Socialising also went out the window, as did just about every aspect of the life she once new. The only constant now being the love of her beautiful children and never ending crippling pain. 

Over seven months after surgery and the swelling is glaringly apparent. This photo was taken after four hours of having her foot raised.

Sonia’s foot swelled to almost unbelievable sizes on a daily, if not hourly basis. Taking an age to reduce back in size, never really resembling normal. It burns constantly whilst at the same time feeling freezing cold. Remember the Ice Bucket Challenge? Imagine putting your foot inside that bucket of ice until it was so cold you had freezer burn. Imagine never being able to take it out again. You might just be getting close to the horror Sonia goes through on a daily basis with CRPS. 

It’s been four years since she has been able to bathe or maintain her foot herself. Even bedclothes touching it is excruciating. A simple toenail trim involves a trip to hospital and anaesthetic, otherwise it’s just too painful. Information online indicates that CRPS type 2 doesn’t spread, but that’s not the case. Sonia now has pain in her left foot, knee and hip. It’s also spread to her threat, right ear and right eye. She has been bedbound for over three years due to the severity of her symptoms. 

Many doctors say that scripture tells them it doesn’t spread. Sorry, but myself and hundreds of other CRPS Survivors can prove different. Yes we call ourselves survivors because CRPS is also known as “The Suicide Disease”. And I can understand why! – Sonia 

By July 2013 the constant battle with her body had become too much for Sonia. Though she loved her children desperately she felt she wasn’t strong enough to go on any longer. Hiding away her Morphine and CoCodamol tablets, she planned to take her life on July 13th. 

But once again, life has other plans for Sonia. 

On July 11th she received a call from her eldest daughter. She was at an antenatal class that day, pregnant with her first child. Sonia thought she was calling to talk about the morning sickness that had dogged her throughout the pregnancy, but today’s call was about something altogether more urgent. Her daughter was about to be rushed in for an emergency C section. The pregnancy had taken a dramatic turn and it was operate now or risk life of both mum and baby! 

Luckily, everything went well and nine weeks early Sonia’s beautiful granddaughter entered into the world. Named Scarlett, she was absolutely perfect! Not only that, but she was a wonderful reason to keep fighting, a reason to live! Sonia believes that Scarlett arrived early to save her; and seeing their close bond, it’s not hard to believe that’s the case. 

Baby Scarlett looking beautiful.

Sonia threw herself into making clothes for her tiny premature granddaughter, soon realising she had a clear talent. Soon Scarlett had plenty to kit her out, so Sonia went on to make things for other tiny babies. Always thinking of others, she had noted a clear lack of clothes for premature babies on the market, and what there was was very expensive. Not ideal for families who are likely already spending a lot of money to be able to spend time with a baby in hospital. 

She set up a Facebook page, and things just grew from there! Eventually Sonia branched out, learning to make jewellery when she came into some jewellery making kit unexpectedly. She loved it, and better still so did her youngest daughter! For a mum who had lost so much time with her children, it was great to find a passion they could enjoy together. Another page was born S & J Crafting Creations, where Sonia and her daughter could sell their wares. 

Whilst their page was relatively new Sonia saw an advert for Conscious Crafties a sales platform for disabled people and their carers. Immediately she got in touch and just like that she became the first EVER crafty! Within a week of joining she became friends with the Founder, Karen Thomas, and has been of invaluable help to her ever since. 

A selection of products in Sonia’s shop.

That was a year ago, and Sonia cannot believe how far she has come. Not only does she have her own business, but she has another purpose! One more reason to live! Sonia’s business is flourishing. Her motto is ‘Giving the gift of a smile!’ That’s exactly what she aims to do. 

Right now only Sonia’s arms and hands that work. So she crafts all day every day whilst she still can, she will not be beaten nor will she give up! Sonia is a fighter in the truest sense of the word, and if I could have one wish this Christmas it would be to allow her to continue with her passion for as long as she could wish for. She deserves it!

To visit Sonia’s shop please CLICK HERE.

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4 thoughts on “Sonia’s Story….

  1. So thankful that So is was able to find a distraction from pain. It can be so unbearable. I know first hand, from Central Pain Syndrome I gained from having a stroke. It’s so vital to have distractions along with support and peers going through the same daily tortures to know, you’re not alone in how you feel and think.

    Lisa Davis Budzinski
    VP of CPSFoundation

    Liked by 1 person

  2. Sorry that you’re going through this Sonia. I just wanted to clarify one thing that your spouse said. He said that the information was all about CRPS type I and you couldn’t find anything on type II… both types have the same symptoms it’s just one is from a specific nerve injury and the other is not.

    Like

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