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.

Dear Mother.. 

Dear Mother.. 

I hope you read this. That you’re still poring over my blog page for scraps of information. Ammunition to take to my dad, grilling him as to why he hasn’t kept you fully briefed on ‘your’ daughter. Tid bits that allow you to continue to play the role of doting mother to your adoring public. You love that don’t you? Even when we aren’t speaking it filters back to me, how you’ve been telling the staff at our local supermarket all about my fight and how you’re doing your best to support me. To get me through. Snippets about my life learned second hand, through my poor dad or the Internet.

Why doesn’t he tell you more? I’ll tell you why. Because I’ve told him unequivocally not to. I’ve snarled and bristled when talking about our history. I’ve sobbed to him over hurts you’ve caused me time and time again. I’ve begged him to close the window you have on my life. Because I’m done. So so done. This time I mean it.

Why has it come to this? How did we get to here? That I can’t even look at my mum, mam, my mammy?! Alienated from my siblings thanks to the wedges you began drilling between us from before my memories even start. How did we come to this, when I thought you were my best friend? The one I could confide in always. The person I woke up after long shifts on my feet so I could share all the events of the evening. The mum who brought me a change of clothes when I ripped my Christina Aguilara jeans on a night out, then joined me to dance the evening away; knowing I was years too young but trusting the morals you’d instilled in me. The woman who threatened the school bully with a baseball bat after she burnt my hand purposefully at a guiding event. I’ll never forget the look of fear in her eyes when you reminded her you live next to the school gates, own a hefty baseball bat, and will defend your children as far as is needed. She towered a good foot over you, but she never so much as looked at me wrong again; her rain of terror was over.

It wasn’t all bad. That’s what’s made it so hard for me. Kept me coming back, a glutton for punishment. Time makes the bad memories fade away and keeps the good ones in a golden haze. It must be some kind of human preservation, but all it has ever done for me is keep me trailing back to the hurt our relationship causes me. Because even in the best of times, when we had long summers at our caravan and you smiled out from behind your large rimmed Dierdre glasses; in high school when you let my friends treat our house like it was their own, or all those holidays I remember your perm and that funny clown tshirt you loved so much. Even then something dark ran through our relationship. You must know it? I loved you so much I didn’t realise, I’ll always love you.

Things really started to change as I got older. Stopped agreeing with everything you said and started questioning. Started becoming my own person. At the same time, I started becoming ill. Not that we knew it. Not that we knew the lifetime of hell my body would face. Back then to you I was just a lazy teenager and you sure let me know it! I’ll never forget the day I didn’t do the pots soon enough for your liking. ‘You’re a lazy worthless little cow!’ Just inches from my face. These outbursts were regular, set off by anything it seemed. Do you remember saying those things to me? At thirteen, fourteen, fifteen. You must remember this one, you still use it now ‘I love you, but I don’t like you very much’. A barb that still catches at my heart, stinging when my daughter tells me she doesn’t like me, she loves me! Meant as a compliment but bringing up years of hurt.

You may not remember all this. But I do. My friends do. The friends who witnessed you grinding down at my confidence. Who saw my sister following suit. Saw her thinking it was ok to tell all the boys I was FRIENDS with I was a slag and would screw anyone who paid an interest. Fifteen and a virgin (save for the guy who doesn’t count because I didn’t say YES) and my sister is offering me out like the local whore. My friends who witnessed me agonising over who my father could be, after the story I’d been fed all my life was flipped on its head. When my sister rung and called me a bastard child. Which I forgave. Forgave the times she threatened me. The times she let her father laugh and sneer in my face. Forgave all the shit she gave me for sticking up for you. Forgave until she threatened me one last time, in front of my daughter. My four year old daughter and my niece. Yet still I love her too.

Because, through all that, I still thought you was my best friend. When you messaged me during my first weeks at uni, telling me how I’d ruined your life and you needed pills to get over me moving away. When you would flit between myself and my siblings; telling tales and causing arguments so you could choose a side and enjoy the battle. When every single time I stuck up for myself I heard the same thing ‘I’m such a bitch, it’s all my fault. You’re breaking my heart!’ Even when I merely repeated the words you’d stated to me back and asked why you said them, even then I was still made to feel in the wrong. I still believed what we had was a normal mother daughter relationship.

Friends, partners, councillors and psychologists have all tried to steer me away from the clusterfuck that is our maternal bond. My psychologist literally begged me not to step back towards the black hole I’m sucked into whenever we are close. But I couldn’t stay away. Sometimes a month. Sometimes a year. Sometimes longer. There was always a time I’d open the doors and let you back in. Hoping beyond hope that things would be different. That the good times that shine so vividly in my head would return. That you’d be my mum, loving and unconditional; not holding your affections over me like a noose around my neck. It never happened.

If anything things got worse each time. Especially now my brother lives at home. You have the prodigal son to form a symbiotic relationship with. To entwine your lives together and rely on each other wholly. That’s what you wanted of me. To rely on you and bend my life to your requirements. To earn your love, a love that should always just have been freely given. Something I began to realise when I became a mother myself. When I heard that voice in my head telling me time and time again that I will not only slather my children in love, no matter their choices in life, but remind them how likeable and wonderful they are each day as best I can. To instil them with a confidence your years of degrading comments sucked from me. Comments about my singing voice sounding like nails on a chalk board. Comments about my ugly spotty back in the ballgown I loved. Comments about me not trying hard enough to battle my illness, when I fight it with all I’ve got each day. Using my ill health and the way I cope with it as another stick to flog me with.

The question remains, why am I laying this bare? Why am I opening up the most upsetting aspect of my life and spreading it bare for the world to see?

Here’s why.

It was the day you wouldn’t allow my children and I to come visit. Instead leaving me to struggle with a one year old and a cold wet garden. I asked you one last time. Treat me as an equal. Treat my kids equally. Stop placing my daughter on a pedestal above my boys. Stop painting me as the black sheep of the family. Treat me like I’m your daughter, no more than my siblings; but no less. Don’t come to me stoking the flames of drama between me and my brother, don’t allow his petty sensibilities stop my kids being able to come see you at Christmas and Mother’s Day, in the house I grew up in. Treat us equally, or leave us alone. I didn’t want my kids ever feeling a second of the emotions I’ve felt my whole life. You chose to walk away, branding me a trouble causer for even asking. For promising with that offer to always be pleasant and polite with my siblings should I see them in your home; as I would be in front of my children anyway. Telling anyone who would listen how out of line I was for asking and how I need to apologise.

I don’t need to apologise. Not to you.

The only person I need to apologise to is my daughter. The poor little girl who witnessed your ugly outbursts more than once. Who has had you dip in and out of her life at your leisure. Who has been taken out for the day then returned home to me within an hour, because her behaviour was SO terrible (my daughters worst days are angelic compared to many children and that’s no exaggeration). Who I had to console and dry her tears when you blurted out that you’d never come to our house and see her again, because I wouldn’t bend to whatever it is you wanted of me at that time. She was three, late for school because I had to calm her after she begged grandma not to dessert her. Which you always did. Whenever we fell out you’d disappear from her life for months on end, despite the fact I never kept her from you.

Never until now.

The worm has well and truly turned. The night you refused my offer of a normal loving relationship was it for me. I saw my children’s heartbreak and upset laid before me and I put a stop to the cycle. Full stop. That was months ago. But yet again you’re starting to try and worm your way back in. Not for love. But for control. For ownership of YOUR daughter, YOUR grandchildren. Well it’s not happening. My daughter is still young enough to forget any upset you put me through. My boys will barely remember you, if at all. I’m ending this cycle and I’m doing it publicly in the hope that it really rams it home.

Leave us alone. You are not part of my family anymore, nor are you part of my children’s. It’s over. 

Of course I’ll still cry myself to sleep some nights. I’ll lay on hospital beds wishing I had my mammy to comfort me. But let’s face it, that’s just a daydream. The relationship I thought we had was never real.

Off to the Seaside… 

Off to the Seaside… 

Today I went to the seaside with my family. We had fish and chips. Walked the promenade. Sat by the harbour and explored down the stairs where people were crabbing. Took the kids down to play on the sand. The day was finished off with candy floss and ice creams and a drive home in the sun. It was pretty much perfect. Or at least it was to the kids, to social media.  

But that wasn’t my day. My day started with my husband telling me it was time to rise and me point blank telling him there was no chance. I needed another half hour, minimum. It started with me feeling shaken  and achey, with a temperature I’ve been unable to shift and a bag on my belly rapidly filling with fluid. You see I haven’t found that sweet spot with my output yet. My stoma is still in its infancy and I’m either sloshing out boatloads of liquid or blopping (yes I made that up) out very thick sludge. There is rarely an in between. Today was fluid. Mornings are often fluid, which doesn’t seem to help my body when trying to take my meds and hydrate. 

Fast forward to leaving and there’s me desperately using my jacket, bag and a cushion to try and prop myself up in the car. My neck and lumbar spine have been complete agony recently, to the point it’s getting a little/a lot scary. Just getting myself dressed and ready had taken so much out of me I was half an hour late with my POTS meds and hanging out of my A hole. Meds administered I peeked up about half way into the journey and started to feel hopeful for the day. The sun was shining, my family was smiling and I was just about on the right side of coping. 

Arriving at Brid we pulled up and hunted down a fish and chip place for lunch. We always start with lunch. Our days out are really only afternoons, I don’t have it in me just yet to cope with a full day of driving and walking around. Not even on a good day. The chippy was a pleasant eat in place and I could see out over the bay from where we sitting. Food didn’t take long and really was very yummy, especially the chips! They reminded me of the type we would get when I was a kid. All good so far! 


Until it wasn’t anymore. About halfway into my meal my stomach began to hurt and I felt hot. REALLY hot. I stripped off my jacket and ploughed on, its not unusual for a meal to have strange and uncomfortable effects on my temperature. But this time, things just kept escalating. As I began to feel myself shudder internally I knew I had to lie down. Immediately. 

Opposite the chippy was a set of two benches. Just about close enough that I could make it safely. I quickly told my husband and beat a hasty retreat, my toddlers screams ringing in my ear as I left. I felt guilty as sin, but I knew I couldn’t turn back and console him. Waste any time and he would likely see me fully flake for the first time in his little life. I’m not ready for that, neither is he. As I reached the bench a rather bedraggled looking man plonked his backside right in the middle of it. Luckily there was a second one. Not so luckily it was right next to a huge bin. But beggars can’t be choosers and I made the best of it. My bag under my head I laid out, ignoring the stares from strangers as I hid behind my over sized sunglasses and stared out to sea. At least the view across the harbour wasn’t half bad!


Soon enough, a little too soon for my body, my family emerged from lunch and I had to scrape myself up and slope down the incline to the promenade. The second I stood my body started screaming at me. 

Idiot!! Get back down!! What the hell are you trying to do to us?! You need to be horizontal, horizontal was working!! At least sit your ass back down somewhere, anywhere!!

I could hear this narrative through every creak and groan of my joints. The pull of each muscle and the ever increasing feeling of trying to walk through a vat of Vaseline after approximately 25 shots. That pain I was just about coping with spiked to a point where every nerve ending in my body bristled and screamed. But I tried not to show it. Just minutes from my rest on the bench I was sitting on a harbour wall. I had tried to look around a small flat museum with my family. But that was too much, so the harbour wall it was. 


I smiled and tried to enjoy the sunshine. The sun that was making me sweat buckets whilst the (apparently) refreshing breeze dumped buckets of ice across my agonised body. Outwardly I smiled whilst inwardly I writhed like a worm on a hook. Not ten yards further I was sat on another bench. Gran and I chatted whilst my husband took the kids to explore the exciting looking steps down to the sea. Covered in barnacles and going right down under the boardwalk the kids loved it, especially seeing the people who were catching crabs on a line. I sat in the sun. Missing the excitement on my little ones faces. Gran told me I should have used my wheelchair. She would have pushed me. I smiled and said I was ok.

The longest walk of all was to the entrance to the beach, past whizzing whirring fairground rides and gaggles of laughing holidaymakers. The kids forged ahead with my husband as me and Gran brought up the rear. She saw me stumbling and dragging my feet, desperately catching myself as my knees went from under me on more times than I care to remember. The children didn’t see; but my older two knew, of that I’m sure. I confided in Gran I probably shouldn’t have come, and she asked if I’d like to leave. No came my answer. I couldn’t show my kids the golden sand and glistening water and deprive them of going to play. I’d be fine. 

Gran and I had a drink whilst my husband played in the sand with the kids. Again I had to lay down, meaning I couldn’t even see them frolicking on the sand. Soaking their clothes in the salty water and not caring one jot. People stared. One young boy was so brazen that he sat less than a foot away, staring intently until I had the audacity to say hello (in my least crazy person voice). I didn’t care. I don’t care. My family is what matters to me and if laying down on a sandy wall is what’s needed to remain present for them, then that’s what I’ll do. People can stare all they like. I do however draw the line at kids purposely kicking footballs at me, of which I told them so!! 


What felt like ten million years later my husband returned with our sopping wet brood. I was less than impressed as we had no change of clothing and no towels. I’d also been laid wearing my jacket and covered over with Gran’s. Though it was sunny, in my opinion it was certainly not the weather to be going for a, fully clothed, dip in the sea. Paddle, perhaps. Drenched to the waist like my eldest son, not so much. My husband disagreed. 

That was the last bit of my barely there patience done. Rather than argue in front of the children I headed back to the car, stopping only at the loos for a quick bag empty. (Though I may as well refer to it as a pee for the amount of liquid I had in there!) At least I’d been able to use the burst of adrenaline to get me back to the vehicle in one piece. Windows down and seat back, I slowly breathed in and out trying to focus on anything but the complete agony I was in and the faces of nosey passers by. Though faster than my journey down to the prom, my journey back had been a whole lot less controlled. It wouldn’t surprise me if people were under the impression I was just another drunk, rather than a mum just trying to push her ever failing body as far as she could. The kids got their ice creams as I pulled myself together. 

An agonising car ride later and I was once again home. As soon as I could I sloped off to bed, stretching flat my now completely broken body and telling my father about the day we had had at the coast. He told me I should get a lightweight scooter. Things would be so much easier! Minutes later my husband told me I should have cancelled. 

But I couldn’t do any of those things, cancel, wheelchair, scooter. 

To cancel would have let down Gran and the kids, who had all been looking forward to this treat. So why not use my wheelchair or a scooter? Because I’ve been doing better. I’m managing. I’m supposed to be building up my stamina. 

But, as I lie here broken and close to tears, I have to ask myself if that’s truly what I’m doing. Am I building myself up or breaking myself down? When I was taught to cope with my ill health it was all about being as active as possible whilst making sure to pace out every aspect of my life. Is sitting down at each point I cannot physically stand any longer pacing? Or giving up and not going altogether on bad days, is that pacing? Or, is pacing using aids such as a wheelchair or scooter in order to make the best of what energy and pain reserves I do have? Maybe then I’d have had it in me to make it onto the beach rather than just watching videos taken by my husband. 

My Gift. 

My Gift. 

Recently I’ve been going through a really difficult time. A change in my medications has gone incredibly wrong, meaning I’ve been flaring in every sense of the word. My pain levels have skyrocketed, leaving my meds completely unable to make any dent in them. I’m having hot and cold sweats, shakes, breathlessness and tremors. My racing heart is causing me to be dizzy and trip over my words, and my feet! On top of all that I can’t sleep at night, even though a constant exhaustion sits over me like a suffocating toxic fog. In short it’s been hell. Complete hell. 

My usual look at the moment.
This morning I woke up feeling much the same as I have every other day. I’d only had five hours of interrupted, restless sleep. I was exhausted and in pain. But, I was determined to get out of the house. As I laid in bed and waited for my meds to kick in, something amazing happened. They actually kicked in! For the first time in a long time the haze of exhaustion began to lift and my pain eased just enough to move around without visibly wincing! I couldn’t believe it! 

Of course I did what anyone would do. I made the most of it! In the car we hopped, and down to the park we went. This time, I didn’t sit on a bench and watch as my husband played with the kids. I got up, and I joined in! Today it was me taking our baby on the rides. It was me playing along. It was me being ‘fun mum’. Yes it hurt. Yes it took my breath away. Yes I’m now in bed feeling like I’ve been run over by an articulated lorry. But it was so so worth it!! It’s amazing the difference a few hours out (if that) can make to your mental state. 

Soaking up the sun and charging my batteries for fun!
Ziplining , slow and low! (I may have kinda fallen off.. but I was scraping along the floor anyway so it was fine!)
Little man loved the swings!
Me and both my boys on the slide.

Technically today I did the wrong thing. Technically I should have paced myself. Taken it steady. Reserved some energy for tomorrow. But what’s the point? What’s the point in saving myself, when I have so many overlapping conditions that tomorrow I can still wake up unable to function? I cannot live like that. I cannot and I will not. These last few months have been an exhausting whirlwind of pain and symptoms that’s left me feeling a shadow of myself. Yesterday I was low. I was the lowest I’ve been in a while, crying hysterically at the doctors receptionist when they couldn’t get me an appointment. Sobbing in the bathroom at 2am as I tried to shower away my searing pain. I needed a day like today. Today was my body’s gift to me, I’d be damned if I was going to waste it! 

As for tomorrow? Well, if I’m out for the count (which I likely would have been anyway) then at least I have my wonderful few hours at the park today to look back on. To me, that’s worth it. 

Jaymee’s Battle.

Jaymee’s Battle.

Our story begins when Jaymee became a mother, at the age of twenty. Soon after she was diagnosed with Postnatal Depression, a fairly common problem that many mothers face. As is so often the case, Jaymee was given antidepressants and sent on her way. But Jaymee knew deep down something wasn’t right. Months passed, and she didn’t improve. Those months turned into years and still Jaymee was no better. During this time the doctors tried many different tablets, but none of them worked. The only thing Jaymee gained from the medication was a detachment from her feelings, a numbness to life.  This feeling (or lack of it) enveloped her, it became her new normal. Her coping mechanism to get through the endless days of feeling broken inside.


Around 2013 Jaymee got to the point where she lost herself completely, she had a complete mental breakdown. The medication she had been on had only delayed the inevitable. She describes herself as “high as a kite one minute, the next (she) was the lowest (she’d) ever been”. Jaymee was thrill seeking, and taking crazy risks, with no consideration for those around her. Yes, she admits she had fun at first, but there comes a point when the fun stops and all you’re left with is emptiness and regret. It’s not fun anymore when you’re constantly hurting those who love you. You’d think that being a mother would help put things into perspective, but alas it didn’t. She couldn’t see beyond her own selfish desires. Looking back it was a very dark time in her life, though at the time she didn’t realise.  

Jaymee says, “This is a place I don’t want to go back to.  It was awful. I hurt and blamed the ones who loved me, pushed away people who cared.”

Along the way Jaymee was unkind to herself as well as her family and friends. She had completely lost herself, to the point she wasn’t even Jaymee anymore. It felt as though her head just wouldn’t work how she needed it to. She was lost, adrift in a sea of confusion and extreme emotion. Eventually she snapped. Everything came crashing down and Jaymee could cope no longer. Desperate for help she did something “really stupid and regrettable”,  and though she wishes it had never come to that, she did finally get the attention of her doctors. After years of them just telling her it’s depression, here’s a tablet;  they finally took noticed and realised there may be something more going on. 

Jaymee was referred to a Psychological unit. Finally she had been guided onto a path, instead of wandering aimlessly lost through life. She remembers how the first thing they considered was Bipolar Disorder, but it wasn’t that. She remembers how it took a whole year of doctors, psychologists and psychiatrists analysing her to finally get an answer. A year of being watched, evaluated, pried into. A year of waiting, stressing and wondering. It was not easy to go through, but it was worth it. Because eventually Jaymee got her diagnosis. Her label. 

Jaymee has Borderline Personality Disorder. The symptoms of this are wide ranging and can easily be mistaken for other things, such as depression. But BPD is completely different, and as such will not respond well to the tablets Jaymee had previously tried. Mind describes Personality Disorders as being a type of mental health problem where your attitudes, beliefs and behaviours cause you longstanding problems in your life.

Being diagnosed didn’t make all Jaymees problems go away, but it did help her to understand herself a lot better, to start being kinder to herself. Her diagnosis meant she was able to explain to the people she loved why she behaves in the way she does. It helped her learn to accept herself again, and take some control back. She was finally put on medication that had been properly tailored to her needs. Medication that actually helped. But even more importantly she was given a team of people to support her, and guide her through learning to live with her new label. She had counselling and went on courses to help her manage her emotions.

The journey was just starting, and it was to be a long and difficult one. Getting a diagnosis, a label on your back, does not automatically make things easy. There were many bumps in the road, and Jaymee almost gave up on herself so many times. But she didn’t, she caught hard and she’s still here today, stronger than ever before. 

Last year Jaymees life took another turn, tragedy struck and she lost her Father. The man she had worshipped and adored all her life. Such a cataclysmic event is enough for anyone to fall off their path in life, let alone someone with mental illness. But instead Jaymee did the opposite, she grasped her life in both hands and took back control entirely. Starting by coming off her medication. Now, Jaymee admits this was probably a rash decision, and it’s certainly not something she would recommend to others, but she knew it was something she needed to do. Jaymee needed to grieve for her father, to work through her pain and her loss, she knew this wouldn’t be possible for her on medication designed to dampen down extremes of emotion. Her doctors disapproved, but in the end it was her choice, not theirs. But she didn’t turn her back on all the things she had learned since her diagnosis. Jaymee took those skills and used them to get through life, facing one day at a time.

A year on and Jaymee hasn’t touched her medication again, and she’s feeling better than she has done in a long time. Finally she feels as though she’s found a part of herself again. Things are not easy, she still struggles from time to time, a diagnosis of BPD doesn’t just go away if you choose to stop taking your medication. But Jaymee is learning to live with it, with pride and a new sense of self worth. This has been one of the hardest battles she is ever likely to face, and she’s done it! Eight years, eight years was how long it took to get a diagnosis. Jaymee will never get those years of her life back, those years that should have been spent enjoying motherhood but instead were full of battles. Battles with herself, doctors, and those she loved. She knew in her heart all those years ago that Postnatal Depression didn’t fit with the way she was feeling. Jaymee knew the doctors weren’t doing all they could for her, and she often wonders how her life would have turned out if she had just shouted a little louder, pushed a little harder. 

If you are struggling with mental or emotional problems Jaymee has this message. “Please , please, don’t suffer in silence, seek help if you need it and keep going until you’re listened to. Mental Illness is not a weakness, from mine I found my strength”

Jaymee bravely decided to share her story on Facebook recently. Had she not many of her friends, myself included, would never have known of the struggles she’s faced. Mental Illness is perhaps one of the truest forms of invisible illness their is.  So easily hidden, and so often seen as taboo, people can be left helplessly floundering, battling their demons alone, for years on end. Jaymee says that if even one person can be helped by reading her story, then it was worth it to share. To Jaymee, I say thank you. Thank you for letting us in, and for trying to help those in need. I too hope your story helps others, I believe it will. 


If you are struggling with Mental Illness advice can be found at Mind.org. This post was adapted from Jaymees original Facebook post.

I’m fighting a battle. 

Tonight’s blog post was going to be about the massage I had today and it’s beneficial affect on my body. It was supposed to be happy. Upbeat. Light. 

But I’m not feeling light right now. I’m laid in bed, it’s the middle of the night and I’m feeling anything but light. The weight of the world pushes hard upon my chest, constructing my breaths to short painful gasps. Or at least so it seems. My mind whirs away hashing and rehashing over my problems whilst the stress that was released earlier seeps back into my every sinew. It gnaws at me, scratches at the corners of my thoughts, spoiling them. Fraying them at the edges and pulling at the seams, until they unravel and I’m left with only my stress and a tension headache.

At the moment I’m fighting a battle. A battle no parent should have to fight. I’m fighting with my daughters other biological parent for what I feel is best for her. No, before you think I’m one of ‘those’ women, I’m not trying to keep him out of her life. I’m trying to get him involved. I’m trying to make it so instead of a 200 mile round twice monthly trip, she has that trip only once a month. I’m trying to encourage her biological father to come here, instead of forcing her to always go there. To miss birthdays and events, clubs and memories. 

Since she was young she’s visited him. I’ve always encouraged it. In fact me and his family almost forced it upon him. But those visits have always been on his terms. She has to go there. He will not visit here nor attend anything for her up here. Which I’ve said all along will not work for her forever. As she’s grown up she’s been made to choose between seeing him and going to birthday parties. Seeing him and attending social events. No compromise. No fluidity. Just choose. Here. Or there. 

Recently things changed. She chose. She chose a club which helps her with her health. She chose to only visit there one weekend a month. She chose for her biological father to come here. To support her. To be involved. He is fighting against that choice. He is taking things down an official route. He is bribing and cajoling to get his way. 

But things run a little deeper than just being able to join in clubs and see friends. In fact, last week, things just got a whole lot more serious. My daughter went to a geneticist. She has EDS. Hopefully the same type as me, but at this point it’s not certain. This diagnosis is now a weight on her shoulders. It is now her shadow pulling at her, caught beneath the boulder of EDS and holding her back. I saw the signs. I knew this day would come. But I prayed I could work with her biological father to do things right for her. 

Her club, the weekend hobby that’s unimportant, has actually built her muscle tone so much her EDS has improved in her arms and legs. On the weeks she’s not travelling so far she is easy to get up for school. She’s calmer. She’s happier. She’s well rested. She’s as close to perfect as any child could be. I’m trying to teach her to pace. The doctor stressed how important rest was. Travelling long distances in a car does not constitute rest. 

But today. Today I found out everything regarding her health seems to have been pushed aside. Her need for her biological father to take part in her home life has also been pushed aside. The system that’s supposedly all about the needs of the child seems to be veering towards being more concerned with making life easy for her biological father. 

So here I lie. Stressed. Worried. Tying myself up in knots. 

I’ve tried my best. I’ve explained her needs to her, her biological father, everyone involved. I’ve gathered statements. I’ve spoken to doctors. I’ve done everything I can. I feel like I’m shouting to a crowd of people wearing ear defenders and not one of them is willing to take them off. People don’t understand. My daughter doesn’t understand. She can’t. She won’t understand until she’s older and in agony. When she looks back and sees the safety nets I tried to put in place flung aside. Until she sees a wrong turn was made. 

I hope beyond all hope she doesn’t end up in the same crippling pain as me. But I fear now she will. If she does, who’s fault is it? The biological father who refused to listen to her needs, or me the mother who passed it on? 

No matter the answer, I know I’ll always blame myself. 

Breast is best? 

I want to breastfeed. 

I also want to stand and rock my son. I want to put him in his sling and walk around. I want to go out into the fresh air and proudly push him in his pram. 

I want to take my daughter to school. I want to cook a meal. I want to be able to get dressed every day. I want to drive my car places. I want to get out of bed. 

I don’t want to be exhausted. I don’t want to shake and go dizzy. I don’t want to be confused and forgetful. I don’t want to need supervising on the loo or in the shower. I don’t want to cry at my husband and beg him not to leave me alone at home even once more. 

But I want to breastfeed. Breast is best. Breast is what he needs. Or so I’ve been told. 

But what if breast isn’t best? If I go back on my medication then breast would be downright dangerous. If I don’t, then literally all I’m good for is breastfeeding. 

I languish in bed. Exhausted. Undressed. Useless. 

But my baby boy is breastfeeding. He’s thriving. Surely that’s best?? 
I just don’t know anymore. What’s more important, breast milk or a healthier mummy?