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.

My Stoma Story… Surgery Day, Part One. 

My Stoma Story… Surgery Day, Part One. 

Mornings are always early in hospital. No matter how terribly you sleep the noise and light always seep into your dreams and rouse you from the tiny abandon you’re clinging to. The morning of my surgery was no different. Even though it was well past four when I eventually switched off and drifted into oblivion, I was awake and anxious before the hour hand was barely scraping by six. Today was shaping up to be one of the longest of my life. 

The words of disgust I’d heard the day previously weighed heavy on my mind, whilst the bowel prep still weighed heavy on my digestive system. Despite having nothing to eat since lunch and my drinks stopped in the night, that liquid dynamite was still wreaking havoc on my insides; helped along by my hyperactive nerves. You couldn’t tell by looking at me but I was practically catatonic. Making pathetic small talk one minute and crying the next, seconds ticked by like hours. I swear the sands of time slowed that morning. 


I called my husband to try and take my mind off the sight and smells of breakfast wafting my way. (Food always smells so great when you can’t have any doesn’t it?!) He promised he’d be with me as soon as possible; but with the school run and a toddler to attend to, it would be last eleven when he finally arrived. In the meantime I waited. I worried. I pestered the nurses. I worried some more. 

It was around nine when the anaesthetist arrived at my bedside. He seemed like a nice guy. Down to earth, approachable. He told me how he would numb my pain with nerve blocks and I told him about all the different pain killers and ways of administering them that don’t work on me. He politely dismissed all of what I said, confident that his approach would be nothing like everyone else’s. Desperate to believe him, I nodded and agreed. The surgeon arrived whilst the anaesthetist was still at my bedside, they shared pleasantries as I milked over the similarities between doctors and buses. It’s always the same, you wait forever for one then a whole load turn up at once.. 

Meeting my surgeon was somewhat of a relief, if only a minor one. I had started to believe I’d never lay eyes on the guy! In my imagination he was some eccentric old surgeon with a scalpel and a glint in his eye. In real life he was just an ordinary man. So ordinary his face is hazy from the fog of memory. I probably couldn’t pick him out of a lineup. 

He was the man who would change my life forever and I wouldn’t even recognise him if I bumped into him. 

What I do remember of him was that he listened. He seemed to take in what I said and genuinely try to assuage my worries. I babbled on about my recent struggles, the extreme increase in my pain and the fear that had brought with it and begged him to check over my bowel before closing me up. He assured me he would and I believed him. For a brief moment my fears were sated; until he shook my hand and disappeared from view. My calm disappeared with him, only to return in part when my husband arrived. 

The hours he was there I felt stronger. More able to cope. My husband and I bicker and argue, we are both stubborn and dig our heals in. But we also share a love unlike one I’ve ever known before. He is my best friend, my safe place, my home. With him beside me I feel like I can get through anything. He calms me and gives me strength. We spent our time chatting, holding hands and even both trying to doze. Just being close to him helped. 

All too soon though he had to leave. I’d hoped he would see me off to surgery, but the school run waits for no man and he had a long drive back home. I bawled like a baby after he left. Not for long though, minutes later I was being wheeled down to the operating theatre to meet my fate… 

The surgery before mine had run long, they were still finishing up as I was entering the anaesthetic room. The staff inside were all really cheerful. Each one of them seemed happy and friendly. Of course it could all have been an act for me, but they seemed to be a really great team. They were kind too; within seconds of entering the chilly room I was shivering, seconds later I was handed warm blankets to make me more comfortable. As a bonus, they also halted the annoying chattering coming from my teeth! 

When I’m nervous I tend to babble. Not only that but I fall back on sarcasm and humour. Minutes before surgery to perform an ileostomy in a room full of people who were about to see me butt naked and sliced open on a table I was most definitely nervous! Thanks to that days rota being shuffled I’d somehow ended up with two top anaesthetists and their teams in my surgery, so the room was pretty crowded. My nerves peaked and out of my mouth came what was practically a stand up comedians set. I can’t for the life of me remember what I was saying, but I remember laughter. My own and the six or seven people surrounding me. Fleetingly, as the anaesthetic took hold and my eyes drifted closed I thought to myself… 

If the worst happens and I don’t wake up, at least I went down laughing. 

*Watch out for the next instalment to find out what happened in the aftermath of my surgery and subsequent adjustment to life as a #baglady. 

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 Stoma Story.. My First Night in Hospital. 

My Stoma Story.. My First Night in Hospital. 

I had hoped to update regularly whilst in hospital. Unfortunately the signal on the wards where I was staying was absolutely terrible; so that wasn’t possible. I couldn’t even FaceTime my kids regularly. Instead I took lots of pictures to document my stay, now I finally feel up to sharing My Stoma Story with you via a series of blogs; starting with my first night in hospital… 

Day 1: 13.6.17.

Rather than turning up the morning of my operation, as I did with my hysterectomy, it was decided at my pre op I should arrive at hospital the day before my surgery. Due to my health issues my surgeon and I thought it best I do a bowel prep in order to clear me out ready for life with a stoma. As horrible as that was, I’m so glad I did it and I’d recommend anyone else take the same approach. Clearing out meant I could concentrate on getting used to my new stoma without having the pain and difficulty of getting any remaining stool out of my colon. It was this clearout, and my need to remain hydrated throughout (thank you POTS) that landed me in hospital a day early. 

I’m not going to lie, I arrived at the hospital completely terrified. But that calmed as soon as I was on the ward and settled. The nurses were friendly and the other ladies in my room seemed really nice. There was four of us and we chatted most of the afternoon away. My husband and son stayed to settle me in before leaving for the school run, it was then the serious business of preparing for my operation began. 


First off the stoma nurse arrived, she drew two ominous black dots on my bloated stomach. One of these would become my new stoma, we wouldn’t know which until after surgery. It suddenly dawned on me that after the surgery my stomach would never be the same again. It’s strange to look down on your stomach and know that in less than 24 hours your entire anatomy will work in a completely different way. That this relatively ‘simple’ surgery would change your life drastically. I looked down at those dots for a long time, contemplating the journey ahead. Little did I realise quite how much things would change. 

Marks are put on both sides of the abdomen in case internal scarring prevents the bowel from being pulled through to the surface in one particular spot. The same part of the bowel will be pulled through regardless of which side it comes out at. 

Even though these marks just look quite haphazard, they’re actually pretty carefully placed. The nurse had me sat down and stood up, I also wore my favourite jeans in order to try and avoid their wasteband. The nurse will try her best to mark the surgery site so it is easy to access whilst being comfortable with your usual wardrobe. Obviously placement can never be guaranteed though, it all depends on what the doctor finds inside. 


To try and take my mind off the daunting task ahead of me I arrived at hospital with a bundle of goodies. My friend had kindly bought me a colouring book and pencils, I’d also filled my iPad with all the remotely interesting free books I could find. But most importantly I had a plastic cup which had been lovingly decorated by my daughter. Not only the cup, but the box too. Love hearts, kisses and words of love adorned each side of the box. I read them over and over, reminding myself constantly of the people who I was truly doing this for. 

Of course I wanted to feel better in myself. But it was my need to be more involved and present for my little family that really drove me to have this operation. My husband and children are my world and I want to be as well as possible for them. 


Lunch arrived at around twelve thirty. My nerves were running riot and the meal they offered me did not appeal. I couldn’t even force down this soggy short bread and ice cream. Luckily I still had a pastry left over from breakfast which was just tasty enough to be worth feeling nauseous for. If only I’d known that within minutes of my meal I’d have my cannula placed and be told I was no longer allowed anything solid; I may have thought differently about my lunch! 



Two hours later and it was time to start the dreaded Picolax. For anyone who hasn’t tried it, this stuff is basically liquid dynamite! Created to clear out the bowel quickly and efficiently, most people choose to sit as close to a toilet as possible when they take it! The nurses on the ward, and some of the patients, looked at me with pity as I struggled to gulp down the putrid mix. To me there is little on this planet that tastes worse than Picolax, I literally feel it hitting my stomach and starting to pummel its way through my bowel. Keeping this stuff down is definitely not the easiest task for me! 

Soon those looks of pity turned into confusion. Why wasn’t I running to the toilet? An hour passed. Then two. Three. Four. It was almost five hours before the Picolax had ANY effect. Even then it was not the bowl shattering poonami they were expecting. ‘Luckily’ they had more Picolax for me to drink.  By round two I was exhausted and looking nine months pregnant. My POTS meds had worn off and I was walking like a weird chicken zombie hybrid. This was turning into a long night. 

As I speed shudder shuffled to the loo for the umpteenth time the lady from the bed opposite me chimed up, ‘You know I couldn’t understand why you called your husband your carer when you arrived. But looking at you know I completely get it.’ Thanks. For anyone thinking of pointing out my inadequacies in future, regardless of motive, please don’t. 

The night wore on; even with my earplugs, cushion and sleep mask, I was in no way able to sleep. Yet it wasn’t my stomach tying  itself in knots or the possibility of a river of molten lava spewing forth from my nether regions without warning that was the issue; unfortunately I’m pretty used to those symptoms. No, the issue was my nerves over my impending operation, aggravated by a series of conversations I had had throughout the evening with my bedfellows. 

You see, the lady opposite me had stomas. Stomas which she didn’t exactly love. In fact, she believes many of her current health issues relate back to her previous stoma surgeries. (Due to my preoccupation with my own problems, hunger and exhaustion, I didn’t fully understand the timeline of her declining health. However, it did seem to me that her main issues pre dated the stomas.) Though I felt sad for her that she held so much resentment and mistrust towards doctors, I tried hard not to let her experiences colour my own. 

What I did find upsetting was when she bragged about chastising another patient for having her ostomy bag on show. Telling all of us in earshot how disgusting it was and how she feels the new movement to try and normalise stomas just encourages people to stare. Which they will, because it’s weird and disgusting. 

Her words really shook me. To the point I closed my curtains and sobbed silently to myself. Totally oblivious the woman carried on talking about how gross it was of anyone to see a bag, even with a cover on. We should all respect others and keep it hidden! Another patient popped her head around the curtain and sat with me a while. She had seen my upset, and even though she wasn’t quite sure what a stoma was, she wanted to help. ‘Ignore her’, she said. ‘It’s her age, she’s a prude, people won’t really think like that.’ I nodded in agreement. Wiped my tears and told her I was fine. 

But I wasn’t fine. 

The very next day I’d be having surgery to have one of those ‘disgusting’ bags. I knew that thanks to my issues with pain relief I wouldn’t be able to stand anything over my tummy, my bag would be on show. My see through bag that was surely much worse than a regular fabric covered one. Would she be on my ward then? Would she chastise me too, at a time I’m most vulnerable? My mind wandered further into the future. To my holidays and summertime. Should I hide my bag? Would a cover not be enough? Would people really stop and stare like the woman had said? She had lived it. So surely she knew? Or was she just paranoid thanks to already hating her extra appendiges? 

Question after question swirled through my mind. Worry after worry. Too tired to colour I attempted to take my mind off things with mindless games on my phone. I tried to block out the worries that crept in and gnawed at me. I tried, and I failed. 


Like with all other difficult nights I’ve lived through, the darkness eventually passed. As the sun rose I finally closed my eyes and managed to catch a few precious hours of sleep. It was then, as I closed my eyes to try and make the hours pass faster, that I vowed to myself I wouldn’t let anyone’s issues define me. Nobody else’s opinion will affect what I wear and how I live my life. In a matter of hours I would be getting operated on. An operation I was sure would improve my life. No way would I let anyone else’s negativity impact me. Yes, my nerves were still there. But now my determination had returned, for that I was stronger. 

To anyone else facing surgery and going through similar emotions as me, I say this: Fear is not a sign of weakness. To find something terrifying to the point of sobbing your heart out yet still go ahead with it is a sign of true strength, not weakness. Never beat yourself up for being afraid or upset. Just work through it and continue on your path with determination. 

To be continued… 
* Please note that my experiences in hospital may not reflect your own. I am simply documenting my journey in the hopes of spreading awareness and alleviating any fears I may be able to. 

Check back soon to hear all about surgery day and my early recovery. 

You feelin’ me?!

One of my conditions is POTS. It stands for Postural Orthostatic Tachycardia Syndrome. Even though there’s thousands of us POTSies out there, it’s still a relatively unknown condition that’s difficult to diagnose.

If you have a friend or relative with POTS you may choose to do some online research on their condition so you can better support them. (Big round of applause for caring if you do!) This is a lovely gesture, but please, only do this in order to learn. Remember we are all different, we often have intermingling conditions, and we have already tried EVERYTHING imaginable to get better. We don’t need Dr Google giving us unsolicited advice. Compassion, understanding and company is always welcomed though.

It’s the idea of understanding that’s prompted this post. Often I see POTS described as ‘an increase in heart rate of 30bpm on standing’, which is true. But it is oh so much more. Better articles will explain that living with POTS is akin to living with heart failure in the effect it has on your body. This is a little better at describing life for me. But unless you’ve lived with heart failure (which I hope you haven’t) you’re still not going to know how that feels.

So I thought I’d try to describe how POTS feels to me. Please bare in mind I have LOTS of random stuff wrong with me, so I apologise if not all the stuff I talk about strictly fits with POTS. It’s hard figuring out which ailment goes with which condition these days.

So first, the heart rate. Yes it increases when I stand, often reaching 154 and above. This isn’t bad for many people with my condition, who can go much higher. Luckily I’m not affected when seated, so I can still drive. When your heart is racing it feels like fluttering in your chest. But not sweet little butterflies, noooooo. When my heart races it’s like I’ve got a giant ass albatross in there! Soon, as my heart is going so fast, I start to get dizzy and lightheaded. My head and feet don’t seem to be part of the same body, and I’m almost detached from myself. This makes me clumsy and I often look drunk when walking, or I stumble and trip. One of my talents is tripping over nothing, the other is walking into things. Door frames, furniture, people, anything is fair game.

After being upright for a very short time (often immediately on standing) my body feels like it has lead weights attached, trying to drag me to the ground. Everything is heavy and I’m walking through waist high mud. My energy is sapped as it takes so much (three times to be precise) more to do anything. It’s at this point I’m usually clinging on to someone or something for dear life. If I’m not seated (or preferably laid down) in time, then my body will give out on me.

I’ve been told all the colour drains from my face and I crumple to the ground like a puppet that’s had its strings cut. What I know is all of a sudden the world shifts. Dark engulfs my vision and I can no longer keep tension in any part of my body. I used to think I remained alert, but having not realised a woman was screaming when my head connected with the floor in a local supermarket, I now appreciate that’s not the case. As the world swims back into focus its at that point the pain hits. Let me tell you something, floors are hard!! Pavement diving is not a sport Id partake I given a choice! I lie there, usually crying (I’m not sure why as I’m not upset) and shivering uncontrollably. I can’t sit up too fast or I’ll go again. But when I do, I feel as though I’ve been run over by a freight train for the rest of the day. I usually also end up with whiplash and sprains due to my other joint condition.

However, this isn’t the whole story. My condition causes my body to constantly be in ‘fight or flight’ mode. My autonomic nervous system (the one that controls everything you automatically do such as digesting, regulating temperature, circulating blood) is constantly on high alert. I am the human version of bambi in the woods. Because my body is constantly thinking danger is on the way it does some really stupid things. It sends blood away from my none vital organs, like my digestive system (because according to nature food is not vital, stupid nature) leaving them slow and sluggish. Or sometimes way way way too fast. Which is always fun. My thermostat is always off, so I’m either too hot, or freezing. Or, if I’m really lucky, both at once. My blood pools in my hands and feet, making pain I already get there, worse. Plus it turns them a rather fetching shade of purple. Then, as well as completely exhausting me, my lovely body won’t let me sleep. After all, could you sleep if your body was in constant high alert, waiting for a wooly mammoth to attack? (Fight or flight mode is a throw back from when we were cavemen.) I’ll give you a hint, the answer is no. No you couldn’t. You’d just toss and turn in bed, sweating one minute, freezing the next, and every now and again twitching for good measure. Just because.

So that’s the bulk of it. I know there’s so much I’ve missed out, but my eyes are struggling to focus (that’s a lovely symptom right there) and my hands are hurting. I hope that my description has helped you imagine what it’s like for us a little better. Maybe next time your friend with POTS is being cranky (me every day) or boring (again me) you’ll find it a bit easier to be understanding.

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