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.

Who’s Watching You?

Who’s Watching You?

Hi folks. I don’t know if anyone even reads this anymore, it’s been such a long time since I wrote anything on here. Serious health decline is my excuse, but that’s not the real reason. The real reason is somewhat more personal.

You see I started getting comments on blog posts. Personal ones. Talking about my life and saying I’m faking my illness. They even commented on how often we got take away delivered to my house! This continued to escalate. So called friends and family who never actually see me as they live at a distance started with similar diatribe. How I’m always moaning but theirs clearly little wrong with me. I need to try harder. Push further. Put up and shut up.

I felt like judgement and accusations were coming at me from all angles. That I couldn’t talk about any aspect of my life anymore. If I have a good day and do something, I’m a faker. If I have a bad day and talk about it, I’m an attention seeker. I couldn’t win.. everyone was forcing down my throat that I’m a loser.

This culminated in someone reporting me for benefits fraud. Why? Because I was taken to Florida with my family and my daughter went on a slide that apparently had 216 steps. (Ironically this was on one of the days I was in and out of sleep in the hotel. Crying about the fact that even with a scooter I couldn’t keep up with the rest of the family and I was letting the kids down. Upset that I was spoiling the holiday for everyone and believing I should have stayed home. I forget which of those days she went to that water park, there were a few where my body gave out on me.) They must have overheard her talking about it and assumed I went up them too seeing as the exact number of steps were reported.

I was completely truthful. I told the lady I had been to Florida. I hoped to save up over the years and go again, at my own pace rather than trying to keep up with everyone else. So my kids don’t see me left behind. So we can do all the things we missed. So they can actually get to see the fireworks. I told her about my scooter and the lifts to any ride I did manage to go on. How my neck issues are a new development and I haven’t even reported them as I would be entitled to higher carers and that would mean they’d use the opportunity to swap me to PIP. Stress I don’t need right now. With POTS and my other problems I’m allowed on rollercoasters!

I told her how I felt watched. How I have to try my best not to wear my collar and I’m judged if I leave the house without it. I told her that if I’m having a good day I will continue to go to the park with my kids. If I can manage it I’ll take my son down the slide. I’m going to grab every opportunity to do everything I can with my children when I can, because too much of my life is either in bed or in hospital. Do you know what she said?

She said ‘Good for you!’ She told me it was clearly a malicious report and they see it a lot when people have unseen disabilities. She told me I have to ‘stuff the lot of them’ and live my life as best as I can. If I want to save and go on holidays (Not that I actually can right now, but the hope is there) do it. If I want to go to the park. Do it. Live my life as best I can and don’t apologise for it.

So this is me saying a big fat F YOU to all the people who have tried to drag me down this year; the hardest year of my life. I will keep fighting for my health, I will keep resting when I need, I will also keep going out and enjoying precious moments with my family when I can. I’m not just disabled, I’m a mother, wife, lover, friend, woman.

I’m disabled, not dead and I have as much right to living my best life as any of you! I will not apologise. I will not explain. I will continue to paint a smile on my face whenever I can. Myself, my Doctors and my husband and kids know I’m no liar. That’s enough for me.

PS. Comments will be switched off on this page from now on due to people hiding behind anonymous comments on here to give me abuse. If you would like to comment on this piece please feel free to do so on Facebook where I shall be posting it on my page: This Little Life of Mine

What to do?

What to do?

Recently I’ve been going to London. A LOT. Not for fun, but because of a neck problem I have which could eventually lead me to quadriplegia or stroke. Currently it’s just leading me to pain, exhaustion and lots of scary neurological symptoms: twitching, juddering, slurring, losing grip, extreme brain fog and my legs going from under me as and when they see fit. I also often walk/stumble like a drunken robot who’s pooped my pants on regular occasions. It’s a great look! Other times I look completely normal on the outside aside from my collar and the flicker of pain behind my smile. More and more I’m having to spend my days in bed, missing out on my children’s lives and feeling like all the previous progress I’d made in my life was for nothing.

My bed. My prison. My life.

Because my condition is a complication of another rare condition I have (EDS), worsened exponentially by an accident I had whilst on holiday with my children, the NHS are not willing to cover the very specialised tests and treatment in order to help me. This includes an upright MRI, specialist Rheumatologist opinion, specialist physiotherapy, likely more tests and eventually fusion of my spine.

I began begging my local NHS funding panel for my scan in early October. By the twentieth they had flat out refused. Even with heaps of medical studies explaining that my issues would only show up on an upright MRI, they simply stated a supine one would do. I requested a reconsideration. Sent in more evidence, even a letter from my GP stating how much I needed the scan. Rather than writing to one of the several doctors and specialists who had advised me and were well versed in my condition, they asked my neurologist for more information. My neurologist who had already stated he only knew about this condition at all because of the information I presented him with. I feel they purposely did this to slow time and make excuses not to help.

Meanwhile I fundraised. I held bake sales and tombolas. A fundraising night. I received help from local singing group New Visions and Bentley Baptist Church, even though I’m not a member! I did everything I could think of and drove myself into the ground doing so. This is why I haven’t been blogging. My body is literally broken and falling apart. I’m exhausted. Friendships have been neglected. My life has been fundraise, make calls, get carried to bed if I’m not already there. But eventually we made it! We got enough money together for my scans and the doctors appointment needed.

One of the scan images, highlighting just some of the issues with my neck.

I finally found out I wasn’t crazy! I have all sorts of issues with my neck and the doctor I saw was incredibly understanding about it. Even trying to come up with a plan of action for me. Unfortunately, that plan was all private. Apparently the NHS just doesn’t have the resources I need. Particularly the specialist physios.

Thanks to the wonderful generosity of the Bentley Baptist Church community I have been able to attend two physio appointments already. The initial one was £196 and subsequent ones are £128. Add on travel for me and a carer, plus a one night stay (in the cheapest accommodation I can find, see below picture) so I can recover from the journey, each trip is costing over £200. I use my own funds to top things up and feed myself, use the tube etc; meaning I now have enough funds left to take one more trip to see my physio. I’m also going to be fitted with a hard aspen vista neck brace on this visit which is being kindly donated to me by a wonderful member of the church who is no longer in need of it.

The quality hovels, I mean hotels, we have used to keep costs down.

After this visit though, my funds run out. I had planned to pop up another fundraising page on Facebook. Also, to do another fundraiser at the Library. But I’m so ill I don’t know how I’ll manage to prepare and attend it. Especially just over a week after my physio in London. Each trip is taking me longer and longer to recover from.

Moreover, I’ve had someone harassing me over the weekend. Despite the fact I’ve posted my hospital letters and reports. Even offered to show invoices to anyone who wants to see. They believe me to be a beggar and a scammer.

I believe it’s must be someone I know, or someone who has had a VERY good snoop into my life. But they’ve hidden their name and commented on my blog, (see Dear Mother post: no I do not think it’s her) my blog I’ve not been well enough to write since September. Apparently my children shouldn’t have had Christmas presents. I shouldn’t be going on a free, once in a lifetime holiday with them; after our years of stress and turmoil. I’m a liar and because I have family who can do that for us then there’s no way I’m ‘poor’. What does my families financial situation have to do with my own? I cannot expect them to bankroll my health needs! Yes, I’ve replied to each comment. But not because I’m a cheat or a scammer. Just because I’m sick of this ableist point of view. The idea that people who are ill or disabled do not deserve a life. We don’t work, so happiness should not be on the table for us. Going out to the park or with our families is wrong, despite the amount of effort it takes and pain it causes. Because we should remain out of sight and out of mind.

Life is difficult enough without me grabbing the slightly better days with both hands and holding on with dear life. It kills me when I’m up more and do more. But I love it. Because I’m living rather than just exhausting for a while.

So now I’m at a loss. Do I make this physio my last and just try my best to cope with the collar? Do I fight on? Do I still set up my fundraising page and open myself up to more abuse and stress that I just don’t need? Do I run myself further into the ground organising more fundraisers I just don’t have the energy to do justice?

I don’t know. I just do not know what’s for the best anymore.

I see you. 

I see you. 

I see you. I see you as your ‘glance’ lingers over me just that little bit too long. I see you look and I see you judge. Not that you’d know. As I walk my eyes flit between the pavement and anything close by I can take hold of. As I sit I stare down at my lap. Avoiding eye contact. Avoiding conversation. The once bubbly character hidden deep down inside. Below pain. Below exhaustion. Below stammers and stutters and a noticeable tremor. 


I know what you think. As I sit here, wilting, in the doctors surgery. The weight of my thick coat weighing down at my shoulders. A woolly cap of my daughters hastily thrown on to hide the greasy mess that is my hair. Sticking up in all directions after a night of hot sweats and tossing and turning. My face crusty and falling apart. My lips splitting and bleeding. I see the assumptions in your eyes. At best I’m seen as lazy, unclean. At worst an alcoholic. Maybe a drug user. 


It doesn’t matter that I’m in a doctors waiting room. My pallid skin, the bags under my eyes, it tells them all they need to know. You may think I’m being over sensitive. Assuming the worst of people. But years of illness teaches you the difference between inquisitive, friendly and downright accusatory. When you have health problems that mean you can, and do, have to ask help if strangers; it’s a skill one has to master. 

I’ve had people yell abuse as I desperately stumbled towards home with my daughters hand in mine. Screaming that it’s ‘disgusting to be drunk at this hour’ with a child no less! Outside her school, parents who had previously chatted to me in the pick up line stepped over me without a second glance the day my symptoms got the better of me and I ended up gracing the pavement. Once again my daughters hand in mine. At four years old she eloquently stood up for me when I stood grasping like a landed fish as a rotund gentleman called me out on using a disabled bay. ‘My Mummy has a poorly heart, she’s allowed to park here!’ He looked suitably ashamed. 

I admit it. My family is my shield. Looking into the loving eyes of my children and the steady gaze of my husband saves me from looking at the prying eyes of strangers. But today, alone in the doctors waiting room, my shield isn’t here. My rescue comes only when the doctor calls my name. I wince as I try to get up too fast and escape what feels like a barrage of ever lengthening glances. 

Fast forward through the usual soul destroying back and forth with my doctor and I’m outside, desperately trying to get to my car. The doctors has no carpark so I’m forced to cling to a wall as I move in my half shuffle half stumble towards my goal. Somewhere behind me I register a friendly voice. “Are you ok?” he asks. His eyes are different. Unclouded by suspicion, he’s just friendly and concerned. I tell him I’m fine, whilst clinging to the wall as though my life depends on it. He thought I’d had a funny turn. “Oh, so this is just your normal?” Yes, unfortunately it is. With that the kind gentleman leaves me to my quest; walking off slower than he needed to, perhaps in case I changed my mind. My faith in humanity somewhat restored, I continue on  my epic quest. 

The truly unfortunate thing about this story though, it’s not my health. It’s not my struggles. It’s the fact that the friendly encounter I had today is not my normal. It’s not even close. My normal is the opposite. It saddens me how surprised I was when I was offered a helping hand. If I could have one wish it would be that people offered me that first, rather than their judgement.