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.