Running for Recognition – why my husband took part in a half marathon in aid of EDS UK.

Running for Recognition – why my husband took part in a half marathon in aid of EDS UK.

Today is Father’s Day here in the UK, the day where most of us choose to celebrate the men in our lives. They could be our Father, our Grandfather or a Father figure; or like me, it could be the Father to our children. My husband is not only Dad, he’s also my carer. He’s ‘chief cook and bottle washer’ in our house (a saying I heard a lot as a child) and he works incredibly hard to do his best by me and our children, all three of them.

Though my husband Karl is biologically Father to my youngest son and my stepson, in reality he is Dad to all of our children. When my daughter talks of her Daddy, she refers to him. When she tells her friends at school about her Dad, it’s him she’s talking about. She is his little girl in every way shape and form; they play fight and play pranks on each other, they watch football together and play team computer games. Soon she will be towering over him, but she will forever be his little girl.

Recently she had her EDS diagnosis reconfirmed just like me (they like to do another check a few years after the original one to see if any thing has changed) . They’ve reclassified it now, called it Hypermobility Spectrum Disorder in order to try and make Doctors less fearful of the diagnosis, but it’s the same condition. As usual Karl was by my side at her appointment, listening in to all the advice we were given so he could help as much as possible. Then, out of the blue a few weeks later he decided to sign up for the Doncaster Half Marathon in aid of EDS UK with only a week or so to prepare! Why? This is what he said when I asked…

Why did you decide to run the half marathon?

Initially I decided to run the half marathon as a challenge for myself. My whole life is devoted to looking after the family and its meant I’ve let my own interests and hobbies fall on the back burner. Recently my wife’s health has deteriorated which has left me under more pressure, this has manifested itself in depression; something very common in people who care for their loved ones. I haven’t been to the gym in years, but I thought if I could complete the run it would be a great way to kick start my journey back to a more active lifestyle. My wife now has a home care package and we should hopefully be moving to a bungalow soon, this gives us both more opportunities for independence. Don’t get me wrong, I love my wife and children; I just don’t think people realise quite how high pressure being a carer and parent is. So, when I saw this opportunity I decided to jump at it.

What made you choose EDS UK as your charity?

As soon as I signed up for the run I knew EDS UK would be the charity for me. Both my wife and daughter are afflicted by Ehlers Danlos Syndrome and its important to me that I show them both that I fully support them as best as I can. I know about the illness due to my family being so heavily affected by it, but most people have never even heard of it. Since joining support groups and learning about the condition myself I’ve realised there are thousands and thousands of people worldwide suffering in countless ways because of it. For such a widespread condition there is so little exposure, I wanted to try and do my part to help spread the word.

How do you feel about the money raised, do you feel lack of knowledge contributed to the amount of donations?

So far we have raised £75; I know it doesn’t seem a huge amount, but I only had a week to fundraise. For the time I had to prepare I’m happy with the amount I raised, after all every little helps towards finding much needed research that will eventually help people like my family and I. Obviously we all want to raise thousands of pounds, I’ve even left my fundraiser open in case anyone still chooses to donate, but with the condition being so unheard of it can be difficult to raise money. Often people assume it’s just a case of having hypermobility (as it’s also known as Hypermobility Syndrome) and don’t realise the many debilitating effects EDS can have on a person. Hopefully the more visible EDS becomes, the more people will learn and be willing to donate.

Did you get chance to raise awareness through fundraising?

I hope so. I chose to run in the EDS charity vest which is bright yellow and very eye catching. From what I could see I was the only person there wearing one, so hopefully seeing me pass by got people thinking about the condition.

In the run up to the half marathon I also shared the fundraiser all over my local Facebook and asked people in the support groups to share too. My wife also shared the link from her Facebook page which she uses to talk about all aspects of living with EDS and her other associated conditions; last week her page got two thousand hits so hopefully some people stayed to read a little of the information on there.

Due to an injury I picked up three miles in, I ran alongside two women from around eight miles; they hadn’t heard of EDS before so I told them all about it and how it affects so many people. It felt good to be able to educate someone on the condition and also kept my mind off the pain I was feeling. Hopefully they will go on to tell other people about the crazy guy who ran the half marathon on no training to raise awareness of Ehlers Danlos Syndrome. I know that I’ve raised awareness in at least two people, I’m happy with that. If each of us could educate just two people then think of how many would understand the condition better, it could be in the millions.

Do you feel the aches and injury caused by the race gave you a better insight into life with EDS?

Oh yes, most definitely. I hurt so badly for three days solid after the run. Obviously I hurt where I’d injured myself by pulling my groin, but I also hurt everywhere else. Literally everywhere, even my fingers hurt. I do feel it’s helped me relate better to the pain my wife and child feel, particularly my wife as she was diagnosed later in life so has sustained a lot of strain on her joints. Injuries and sprains in EDS are cumulative, once a joint is damaged it never gets back to how it was (or this is how we have had it explained). Because my wife was unaware of her condition she used to push through her pain and fatigue, this has left her in a state of serious chronic pain. So yes, I do feel it’s helped me understand her better when she tells me everything hurts, but I’ll never know what it’s like to be in a degree of pain all day every day. I struggle to even imagine it.

Why didn’t you give up after the injury?

I didn’t give up for several reasons. Firstly, this was a personal goal of mine and it meant a lot to me to complete it; also I wanted to give those who had been kind enough to donate their monies worth. Most of all though, I wanted to make my wife and children proud.

At around eight miles in I collapsed in pain by the road, I thought I was done and rung my wife to tell her I had failed and would be getting collected by the sweeper bus. I really believed I couldn’t go on.

My wife told me how proud her and the kids were of me, that whether I completed it or not I was a winner in their eyes. She also put the phone on speaker so my children could shout words of encouragement down the phone. This was the first time she had been alone with the children for over a year, but she reassured me they were all being great and her carer was due any minute meaning I could walk the rest of the run if needed. She encouraged me but didn’t pressure me.

The two ladies I mentioned earlier offered for me to tag along with them as they weren’t going to be rushing and running in a group is always easier. Much like when battling an illness, support is key. Thanks to the mental boost from my call home I was able to catch up with the ladies I’d met and complete the whole thirteen miles. I’m so glad I did as I wanted so badly to earn the medal and give Ehlers Danlos the exposure it deserves.

What do you think about the way doctors treat EDS? (how much knowledge they have, their willingness to treat patients with the condition?)

After seeing how my wife is treat due to her condition I know for sure that more research needs doing into the condition and the problems it causes. When my wife is taken into Hospital and has to spend her time educating almost every doctor she sees about her condition you know something isn’t right. We have travelled to London more times than I can count because there are so few specialists North of the capital. What’s even more disheartening is even when you do see a specialist in Ehlers Danlos they will more often than not refuse to treat any of the issues it causes! Often we are left feeling disappointed and hopeless. I can’t talk for other countries, but in the UK something needs to change. Even issues not linked to the EDS don’t get treatment, my wife has an aneurysm and she’s literally been told that she’s lucky it’s not in a spot that will kill her if /when it busts as due to her EDS they won’t consider surgery on it! Things need to change.

As a parent and partner how does EDS affect you?

Ehlers Danlos has completely changed my life despite me not being a sufferer. I had to give up a well paid job around four years ago in order to become my wife’s full time carer, my friendships have all but fizzled away and I’ve had to put up with a lot of negativity about not working.

Since leaving work my partners health has deteriorated. She has developed Cranio Cervical instability as well as other issues with her spine, this means she relies on me to get around and has to be laid in bed a lot. The stairs are dangerous for her as her legs go from under her without warning, so on the rare occasion she makes it downstairs I have to bare her weight over my shoulders. This is not only dangerous it’s also caused me to injure my back. Hopefully we will soon get a bungalow that will suit our needs better and my wife will get a PA, but even then I’ll be her carer. It’s unlikely I’ll get back to work and if I do it won’t be in a job with long demanding hours like before.

With my daughter I do find it tricky. She’s at an age where hormones are beginning to fly around her body and it’s hard to tell what is a hormonal meltdown and what is her body telling her she is in pain or needs to rest. Even she doesn’t recognise the signs that her body has had enough for one day yet, so it’s very hard for me to. Sometimes I don’t pick up on when she’s actually in pain, I’m trying to improve on that.

As much as I know about EDS I’ll never actually know how either of them feel as it’s not my body it’s hurting.

Will you be doing more events?

I do plan on doing more events throughout the year and will be proudly sporting my EDS vest at each one of them, though I won’t be doing another thirteen mile run on no training any time soon! Some people think I’m stupid for taking on the Half Marathon at such short notice, but I’m glad I did it as its proved to me that I can still achieve my goals. Currently I’m considering another local run through Yorkshire Wildlife Park, its a 5k run with a fun run that your children can join if they like. The entry fee goes towards the conservation of the animals at the park, including Zebras (which anyone with EDS will know are our mascot). I’ll also be raising sponsorship for EDS UK. Plus I’m on the lookout for other local events, eventually working up to doing Tough Mudder and such. I hope to get plenty of use out of my EDS vest!

Any further comments?

The only thing I want to say to anyone out there who is battling this illness is never give up. I know it’s hard; there are days my wife can barely move for pain, days where the lack of medical help gets us all down to rock bottom, but don’t give up. As long as people keep up the fight to raise both awareness and funding there’s hope that things will improve; never give up that hope.

If you would like to donate to Karl’s latest fundraiser please click HERE. I’ll update the link each time he starts a new one, so feel free to check back if the current one has finished. There’s still time to sponsor his half marathon!

All professional photographs accredited to Nullstack Ltd.

The Aftermath of my Appointment.

The Aftermath of my Appointment.

So, I’m here again. Trying to kick off my writing..

I have spent the last year fighting tooth and nail to get help with my neck problem. I raised money. I got it diagnosed. I saw specialist after specialist and finally I got in with one of the best neurosurgical teams in Britain at, apparently, the best hospital.

They dragged me down there for appointments, pressured me into dropping my other doctor, then discharged me with no help whatsoever.

When I say no help, I mean it. “Sorry we can’t do surgery on you” (yet admitted they would for anyone with my issues without EDS) “You’re discharged.” That’s all I got. No advice on how long to wear my collar, what collar is best, where to turn for any form of palliative care, if I’m going to degenerate further… The list goes on. I never even got to see the doctor I was referred to. Yes I did ask. I also asked all my questions. I was met with shrugs and I don’t knows.

Then the worst happened, I fell apart. I fell into a million pieces in front of both of my kids. (My specialist was in London and we had no choice but to take them due to circumstances at the time.) I saw my life stretching before me and it terrified me. It still does. I’m desperately trying to piece myself back together whilst reassuring my kids I was just overwhelmed at the doctors. I am not lying, I was overwhelmed, but the thing is I still am.

That evening, so my children didn’t have a night of listening to me sob in a hotel room, we dragged my broken body and soul to Winter Wonderland. I couldn’t walk round, so we went to the circus. My children thrilled at the spectacle in front of them and seeing them happy made me and my husband smile, at least for a little while. We took lots of photos of the pretty lights, it may seem we were there for an age. We were not. It was the circus then home. Home being a hotel room where I fell into bed in agony, an agony of my body, mind and soul. An agony unlike anything I’ve ever felt.

The next morning was back to our home, but to make the visit a little more special for the kids we took them to the Natural History Museum first.

It may seem strange, ‘claiming’ to be in so much pain but still pushing on. However, as a mother, something took over me.

A need to push the memory of me breaking down out of my children’s heads. Show them I’m ok, even though I’m far from it. I wanted to fill their minds with wonder and excitement so they were the lasting memories they brought home from the trip. Me too I guess.

Again many photos were taken. Again many smiles were seen. All were uploaded on my profile. I love to share the fleeting moments of being a ‘mum’ to my children. Most of the time I feel almost ghost like in the home. They know I’m here, but I’m never quite seen. The museum was genuinely a wonderful experience and great for access. So was Winter Wonderland (or at least the small part we saw). But inside, I was millimetres from falling apart. The whole time I was going out of my mind at the thought of a life like this, wondering how far I’d decline, how rapidly?

As the photos uploaded the likes from family and friends rolled in. They know how important these times are to me, how hard it is for me to achieve a few hours out and about. To keep that smile on my face.

Sometimes though, sometimes I wonder if I’ve gotten too good at it. Comments consisted mostly of how nice it was to see me ‘genuinely happy’. Even on the evening after my appointment where I’d originally told my husband I didn’t want to be in any pictures because I couldn’t force a smile. The evening I made sure I was too exhausted to sob myself to sleep so my children didn’t hear me. Even then I looked genuinely happy.

That scares me. It scares me because how can I reach for the help I need if people can’t see the cracks that run so deep? Why would anyone believe how bad things really are when I hide it so well? Am I hiding it for my children’s sake, so they’re not afraid, or because I can’t face it? Because if I do I’m afraid I just won’t be able to take it? Honestly I don’t know the answer. But I do know this..

I’m not the only person that does this. Many of us in the disabled /chronically ill community hide our pain. We put a veneer of smiles over our heartbreak and show that the phrase ‘you can’t polish a turd’ really isn’t true. My life had honestly gone down the toilet, but a few sparkly lights and a smile I ensured reached my eyes and all was well. I also know I’ve not been writing here because when I write I open up and a culmination of exhaustion, depression and certain events, has left me afraid to do so. But I had to write this. I had to get it out. Because I can’t fall into old traps.

The last time I hid too well behind a mask of smiles I left myself completely alone at the point in my life I was most vulnerable. I almost lost myself entirely.

I will not do that again. To those of you also hiding behind those smiles, the posed photos which hide the pain; some even making their illness worse to appear ‘normal’, I implore you to try to open up. I used to. I’m going to try to again. Not to seek attention. Not to garner sympathy. Simply to show the truth of my life. To help me accept it and hopefully find a way to come to terms with my new reality in the best way I can. This, this is the reality of that night…

Trying to hold it together as I lay full of worry in a room with my family.

Please note comments have been turned off on here due to trolls who hide behind no name, if you’d like to comment please do so on my Facebook Page @Littlelifeofmine where all posts are shared.

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.

Time to heal. 

A lifetime ago I was a young and energetic (ish) uni student. I studied Surface Pattern Design and had a summer internship set up with Emma Bridgewater. I was going places. I knew my path. It involved graduating from my course and speeding off on my exciting roller coaster of a career. I’d continue to study. I’d travel. I’d make good money and fulfil my dreams. 

But life had other plans. My health problems were already there. Though undiagnosed and less severe than today they were already dragging me down. Like lead weights tied to my heels they slowed my progress. Put me forever behind the pack in the race to qualify. But I was determined. I could do this! I would work extra through the summer and take my third year part time. Unfortunately my tutor did not agree. My tutor who also happened to be head of the faculty. 

Because I only had a crohns diagnosis she didn’t see how all my other complaints fitted with that. Though I had mountains of doctors notes she felt I had just fobbed off uni. Though, with my allowed extra time, I was on track to pass the year she felt I hadn’t had enough taught time. Her recommendation was repeating the second year and doing the third year part time. I didn’t have enough funding for that. I told her so. I told her I’d have to leave. She stood by her recommendation. 

It was then that my life altered. It was the that everything I’d hoped and dreamed of since being tiny crumbled to dust. This was the first major blow dealt to me by my health. The first of many. But this was possibly the one that broke me the most. Not only because it crushed my dreams. Also because my self esteem was shattered. Surely if I had any talent at all my tutor would have fought to keep me on the course? Supported me, as I’d seen her do other students. Not cast me out like last weeks rubbish. 

That was almost ten years ago. At the time I believed I picked myself up and carried on, unfazed. But that’s not true. My self belief had taken a huge knock. From that day forward I stopped drawing. I didn’t paint. My sewing machine lay idle and was eventually gotten rid of. Looking back through my social media accounts there’s been many times I’ve sworn I’ll get back into my drawing. My art. But I never did. I remained broken. 

Then I started this blog. The first creative thing I’d done in such a long time. Even though I wasn’t writing for anyone in particular it still terrified me. But I ploughed on. A few people seemed to enjoy it, and a friend asked me to share it on her site. (https://www.consciouscrafties.com/) Conscious Crafties is a selling platform for disabled people and their carers. It gives them an outlet for their creativity and helps them to build up their confidence and self worth. Not only did I join the site. I also joined the private group for the Crafties. Being a blogger for the site meant they kindly let me in. 

I have to say that being around such a creative group of people has been incredibly therapeutic for me. Their makes are beautiful and inspiring. So inspiring that a few weeks ago I picked up a sketchbook that I’d been given two years before. For the first time in such a long time I sat and I drew. And I enjoyed it! I felt relaxed and at peace. Since then I’ve been to an art master class and enrolled in a life drawing class. Only once a month. But it’s something to look forward to. I’ve drawn more and more and even took some tentative steps into crafting. 

I will never be the high flying designer is hoped to be. But thanks to the creative environment I happened upon in Conscious Crafties I’m now starting to enjoy art again. I’m starting to heal. 

Here’s a few of my pieces I’ve done and a beautiful key ring which is one of the many items which can be found on Conscious Crafties. 
 

Squid drawn from my daughters animal book.
  
 
My first craft.
  
Pencil seal drawn from google image on my phone.
  
Matisse sketch in oil pastel.
  
Keyring can be purchased at http://www.consciouscrafties.com

NB Please note I have received no financial incentives or goods for this blog post. I just wanted to share such a positive influence on my life. Thank you.