Sonia’s Story….

Sonia’s Story….

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.

Medipen, The Big Decision. 

Medipen, The Big Decision. 

Many months ago I wrote a blog about my decision to use a cannabinol vape pen to help with my pain. Cannabinol is an extract of cannabis, which doesn’t get you high. It does however claim to have many health benefits and I was interested to see if these were true, or just yet another money spinning hoax aimed at taking advantage of desperate people. 

Initially I intended to write up my findings within a month or two of trialling the product. But life had other ideas. So here I am, several months and a major surgery later, ready to share my findings…

First off about the pen itself. I found the product very easy to use and nice and light to hold. The width is similar to that of a good ballpoint pen, as is the length, so a great size to carry around. I bought a second USB charger to have in my handbag, this allowed me to have one at home and one for if I ran low when out and about. The second charger was pretty redundant though, these little gadgets hold their charge surprisingly well! Usually I would just pop it on charge in my laptop as I did a little ‘work’ (writing, checking Facebook, photo editing, checking Facebook, networking, checking Facebook) and it filled up in no time. Overall for simplicity and style I was very impressed. 

Contents of the Medipen starter kit.

As a none smoker I was incredibly nervous about using something which reminded me so heavily of a cigarette. Particularly in the way I had to inhale it. I wondered if I would get used to it, or even be able to tolerate it at all? 

Medipen contains no nicotine at all and is in no way addictive. 

I need not have worried. Medipen cartridges are available in many different flavours, more than I would have imagined! I tried the mint, cherry cola, coconut and white grape. They were all pretty good, though the coconut tasted a bit too much like a Piña Colada for me! I was surprised at how much flavour you could pick up just from inhaling vapour, the taste was really enjoyable! My favourite was by far Cherry Cola with White Grape coming a close second. What was also nice was that inhaling the sweet vapour helped me eat less actual sweeties, something I do far too much of when I’m in pain. Plus, the vapour has some of the scent in it from the flavour. I became my own air freshener whilst vaping! 

Not that there is much vapour cloud. Another thing I was worried about was filling my home up with a damp cloud of acrid smelling fog. I’ve been in ecigarette shops before where you can barely see your hand in front of your face. I didn’t want that for my home, and I’m glad to say I didn’t get it. The Medipen uses a wick to draw the vapour up to your mouth, meaning you get a steady amount. You really have to draw hard on the device to form a large cloud, and honestly there’s no need. A gentle inhale for a few seconds gets you plenty of vapour, flavour and cannabinol; without billowing out smokey mist clouds for all to see. The Medipen is discreet. Refined. Classy. 

What I expected vaping to be like on the left, versus what it was actually like on the right.

As far as usage goes it’s really up to you. I found that a few minutes of use on a morning, at lunchtime and before bed suited me. Though occasionally I would use it in between if I was having a bad day. I liked to keep my pen with me as knowing I had the extra help was a comfort in itself. My level of usage meant each cartridge lasted around three weeks, even with my husband stealing some for the occasional headache or general ache or pain. By the end of the experiment he was using the Medipen each evening with me as he found it also benefitted him in some unexpected ways… 

So that’s the basics covered. Now down to the important part. DID IT HELP??

Honestly, I have to say that yes it did. I was completely ready to be disappointed and instead was very pleasantly surprised. Do not get me wrong, the Medipen is not a miracle cure, but it did help me with my multisystemic problems. My pain was decreased to the point that I could function better. I could move without wincing and walk without feeling as stiff. On some days I even managed to reduce my pain relief, something I have not been able to do since I went back on my medication after giving birth to my son. 

The evening ‘dose’ relaxed me and calmed the random cocophany of pains and sensations I usually have cascading through me. I have Dysautonomia which causes my body to always be on high alert. Settling down for rest when your body is tick tick ticking away is never easy. In fact it’s nigh on impossible. But with my Medipen I could feel my body calming and the tension easing from my muscles. Though it could often still take me a while to drop off, the chances I would sleep were higher. Plus, the sleep I did get was much more restorative than usual. A benefit I’d read about, but been highly sceptical of. 

It was due to the help I had with sleeping that my husband decided to try the Medipen one evening. He himself is a restless sleeper and spends many nights tossing and turning. I gladly offered to share, why should I be the only one reaping the benefits of our new little doohickey? Surprisingly he dropped off within minutes. Much faster than I do. I guess that’s the benefit of a properly functioning body, things work better on you! But what was even more surprising was what else happened that night…

If my husband used the Medipen before sleep not only would he rest better, he slept silently!! NO SNORING!!!

Usually my husband not only snores; but talks, moves and sometimes even gets out of bed! To be calm and quiet was not only got for him, it was GREAT for me! My often tired and grumpy husband woke with a spring in his step, and I didn’t consider committing murder each night. Definitely a win win! 

As always I woke on a morning feeling like a dogs dinner. But, I did find that whilst using Medipen that feeling subsided faster. Usually I don’t see mornings at all. During this trial I woke around 9/10 am each day. After an hour or so to come around and allow my heart medication to work I could actually get up and dressed. I had the energy to go out and do things, or cook, play with my children. I could be a ‘real’ mum! 

My main worry was having even less energy whilst using this product, I couldn’t believe I had more! 

Yes I still had to be careful and pace; I couldn’t do as much as ‘normal’ mums could. But I could do enough to give me my smile back. Enough to make my children feel they had more of me. I could be present in my own life. We went on holiday towards the end of my trial, a break at a holiday park in Yorkshire. On every other holiday we’ve been on my husband has taken charge, but not this time. I not only participated, I had fun. I was out doing things with the kids every day. Ok, by ‘doing things with’ I mean I watched them doing activities; but that’s 1000 times better than being stuck in the van whilst they go have adventures without me! 

Having fun with my kids on holiday.

I found that even during the day the Medipen calmed me. Not so as the make me sleepy, just to make things easier to handle. When your body is constantly in pain, and teetering on the edge of ‘fight or flight’ mode, it’s easy to have a meltdown. Me seeming moody or snappy is commonplace in my household. Crying feats and explosions of anger are also not unheard of. During the trial these episodes happened much less often. In fact, when things happened that would usually have my heart racing (more than usual) and adrenaline cursing through my veins, I actually managed to remain calm and carry on. My driving improved, how I coped with others driving improved. I had more patience and could shrug things off better. 

Of course nothing is perfect. At times my pain would still sneak through and bite me on the bum. Also, I did find it hard not to forget that though I was feeling better I wasn’t ACTUALLY better. The Medipen is not medicinal. Whilst it can take away feelings of pain etc, it does not cure the underlying cause. I did end up crashing a couple of times during this trial and ending up back in my bed. It’s easy to do too much when you start to feel human again. But it’s a learning curve. One that I was happy to be on! I’d rather crash from doing too much than not be able to do anything at all! 

But; I hear you asking yourself, why is this blog in past tense if the product is so good? Why is she not using it anymore? Well my friends, that’s where the surgery comes in. As cannabinol is still so new to the medical community, and not yet sanctioned by the NHS, I was advise to stop usage before my operation and for a time after. It’s now a month since my surgery and I realise that now I have to make a decision. 

I thought my big decision was whether to try the Medipen, in fact it’s whether to continue to use it long term. 

The Medipen is by no means a ‘cheap option’. Living on disability benefits the cost per cartridge is arguably quite high. (Though I must point out it’s much cheaper than smoking!) I have to ask myself, are the benefits of the Medipen worth the financial implications? Would I be better spending that money on other things? Am I being selfish? Would my family be better off if I used the money elsewhere? These are all questions I’ve been wrestling with for the last month. As I’ve been pretty much bed bound, struggling to sleep and barely coping with my pain. Can I take money from our family pot and spend it on me?? 

The answer is yes. 

Because when I do better, my family does better. My relationship with my husband improves. My children are happier. Life in general is just easier. Sure, I could use that money on toys, trips out or takeaways. But they hold no real value to my family. What we need is to make memories together. I want to be at the park, feeding the ducks with my husband and baby. Not home watching videos of it on my phone. They want me there too. I’m sick of being backstage in the show that is my family’s life. It’s about time I was up front and centre! I owe it to them, I owe it to myself! 

So tomorrow I order my new cartridges. I restart my Medipen journey; and I hope I see the same results. Then, in the spring, I hope to be writing an article outlining how I’ve found long term use of Medipen. I really hope that, unlike with medications, the benefits do not ware off with time. I’ve got a good feeling that they won’t… 
*Please note that I received my Medipen and cartridges free as a Thankyou for writing about my experiences. All opinions in this blog are honest and my own.