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 our 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? 

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 he 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. 

Because still, 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 back tonne 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 and not hold 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. 

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. 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 put 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, 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. 

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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. 

Election 2017, Voting Day. 

I like to keep my blog free from politics. After all, this is my health blog. My blog about life with disability. What does politics have to do with it? 

I didn’t post during the American election, aware I’d be attacked for being English. Told I know nothing. Instead I lamented with friends. Tried to support them as their worst fears came true. I didn’t post during Brexit. I shared my thoughts and campaign messages I’d found on my personal page. But I didn’t write about them on here. A snap election was called. I remained silent on my blog. This platform that allows me to reach so many people with my thoughts. 

But, as I lie here. Fifteen minutes into June 8th 2017. I can remain silent no more. 

Because this election is about disability. It’s about the crippling grip our government currently has on myself and others like me, wringing every last drop of hope out of us. It’s about the lack of hospital beds, the wait for treatment, the doctors and nurses choosing to work abroad rather than face a life of toiling for hours on end to receive little pay. It’s about the social care we need being pretty much none existent at the moment. Budget cuts forcing pensioners into fifteen minute care slots, disabled people in unfit housing because there’s simply nowhere else for them to go, ill people being offered cheaper medication with more side effects and less benefits. 

This election is our countries chance to band together and say enough is enough. Not only when it comes to our NHS, but to all our public services. Our police force, that was so drastically cut they could no longer keep track of the terrorists on our doorstep. Terrorists who for the ten years prior to the cuts hadn’t managed to accomplish major attacks. Now we have had three in quick succession. Why are we losing lives at the hands of terrorists likely radicalised in Saudi, a country our Courbet PM is providing arms to?? Enough is enough, for our soldiers. Sent off to fight in illegal wars. Wars that are more about making money than actually needing to fight. Our troops deserve better. If they’re going to put their lives on the line, let it be for the right reasons! 

I know I will likely lose followers because of my views. Because I voiced them. But, as I lay here feeling sick to my stomach, I don’t care. For the first time in my life, in over a decade of having the right to vote, I am genuinely afraid of the result this election will bring. 

It should be an easy choice. A good man, who has taught hard for our rights and believes in democracy, who will carry out his parties manifesto to the very best of his ability regardless of if he ‘won’ the vote, who has a fully costed plan to fairly share our countries wealth and provide funding where it’s needed. Or a questionable woman, who’s own husband is minted but somehow doesn’t have to pay his taxes, who has no qualms about dessimating our police force and sending our nurses to foodbanks, who believes in taxing the poorest communities beyond their means while reducing tax for big business. It should be an easy choice, but for many it’s not. 

Why? Because the newspapers have painted Corbyn as a clown. A bumbling idiot who has no idea what he’s doing. Thousands upon thousands turn up to hear him speak, yet the newspapers still claim he has no authority. No passion. No conviction. The EU have offered to slow the Brexit process until a new government is ready, but the papers still tout Mays prophesies that a new government couldn’t possibly be ready in time to start proceedings. They claim he’s a terrorist sympathiser, while hiding the fact she sells arms to the country which is one of the highest threats! 

Another why; why are the papers (and the BBC) so biased?? It’s simple. Money. Money makes the world go around and it definitely controls the viewpoint of the media. The papers are owned by the elite, the elite who want to keep the rich rich and the poor poor. (I know I sound like a conspiracy theorist when I say that, but look at the history to see it’s true.) They are going to do everything they can to keep a man who wants to fight the crooked tax evaders, and make OUR COUNTRY work as well as possible for ALL of us, out of power! Of course they’re running him into the ground. We have to see past it! 

So, whilst it’s clear who I think the right option is today, I won’t ask you to vote my way. What I will say is this…

Please, I beg of you, before you tick that box  have a full readthrough of the manifestos. Think about all the doctors and teachers who have made videos begging you to vote for change. Think about your old age, and where you want your savings to go. Think about your children, do you want university to be a viable option? Think about the old lady down the street, who won’t get her winter fuel payment anymore. Think about the disabled, trying to hold it together after all the epic cuts and braced for yet more. Think about the police officers who were made redundant, the nurses who feed their families at food banks. Ask yourself, is Britain truly Great right now? 

Ignore the bias of the tabloids and mainstream media. Research for yourself. Forget about family voting traditions or past PMs. We aren’t going backwards. We need to look to the future. 

VOTE FOR THE POLICIES, NOT THE PERSON. 

Finally, choose the candidate who you believe will make BRITAIN Great again. Great for everyone. After all, we are the original Great, let’s be the best we can be. 
Here’s a few links if you want to start that research: 

https://www.thecanary.co/2017/06/07/boris-johnson-left-floundering-journalist-finally-asks-question-sink-tories-video/

https://www.facebook.com/labourparty/videos/10154579470777411/

https://www.thecanary.co/2017/06/05/corbyn-delivered-a-speech-that-could-win-him-the-election-but-the-bbc-isnt-showing-it-video/

http://www.telegraph.co.uk/news/2017/06/05/david-camerons-former-aide-steve-hilton-calls-theresa-may-resign/

http://www.independent.co.uk/news/uk/politics/mps-pay-rise-salary-commons-parliament-1000-public-sector-worker-pay-politicians-a7476601.html

http://www.digitalnewsnetwork.net/2017/06/04/london-bridge-is-falling-down-and-so-is-theresa-mays-credibility/

http://www.independent.co.uk/news/uk/politics/theresa-may-naylor-review-nhs-privatisation-sell-off-property-developers-a7766486.html

Waiting List Lifers.. 

Waiting List Lifers.. 

When my surgeon agreed to do my ileostomy he asked me if I would do him a favour. He is running a study of people on waiting list for surgery and hoped I’d partake. Of course, I said yes. In my opinion, the more doctors know about life as a patient the better. So, in that vein, I’d like to share with you my experience of waiting for my surgery date… 

It’s been about a month now, since my surgery was agreed. Over two weeks since my pre op. Still I have no date. Things may have gone a little faster, but my extensive and complex list of health issues threw a spanner in the works. As always. 

In order to be scheduled for surgery and receive a date you need to have the go ahead. ‘Fit to proceed.’ Whilst my tests at the pre op all came back ok (despite being told I’d had an acute kidney injury I wasn’t aware of recently) I couldn’t be pronounced fit without more information from my POTS team. Recently they’ve put me on medication for MCAD and the nurse who oversees pre op was, rightly, concerned this may affect my care needs whilst in surgery. My progress along the conveyor belt was halted until an email came back outlining the correct protocol to follow for me. 

Whilst I appreciate the fact that the hospital is doing their best to ensure a good outcome for me, the wait was maddening. Every day I was calling around, leaving messages on voicemail after voicemail. Until eventually I heard back from the lovely lady coordinating my pre op assessment to say that she had given the green light!! Fantastic! I was elated! Finally things could get going!! 

OR NOT… 

My surgeon was away most of May and will continue to be away in June. Meaning that, if I want to be sliced and diced before July I need to put my faith in another surgeon. A surgeon I haven’t even met. This is something I was dead against. I like my surgeon, I TRUST my surgeon. He is the best my hospital has to offer. I always said I would just wait to be seen by him. 

But this waiting is driving me mad! Each day I hope and pray that the post will fetch me a hospital letter with my admission date, or the phone will ring with a cancellation I can slot into. Meanwhile, my condition is worsening. The prolapses continue to get larger and larger, making it harder to pass anything. Anything at all. My insides hurt. They ache and they stab, twist and pull. My stomach swells and my kidney area feels about ready to explode. On top of all that sits the stomach cramps and absolutely crippling back pain. 

I’m trying to continue normal life. To still get out and about. But by the end of the day I’m yelping in pain like a wounded pup. Any movement takes such an effort that it’s leaving me on the constant verge of tears. I feel angry and disgusted with my body and what it’s doing to me. I’m afraid that my bladder will retain too much and give out unexpectedly. I sleep (for the little I can get) on a towel as I’m afraid of accidents. I’m afraid that soon my back will be so painful I won’t be able to attend to my complicated bathroom needs. I’m afraid that my kidneys are becoming damaged from the waste I cannot clear out of my bladder. I’m afraid that things are worsening to the point that surgery will have to be more extensive than we hope. 

On top of all the health fears, I have the fear of letting my children down. Letting my husband down. Being seen by him as a vile and grotesque creature. All these fears, the pain and exhaustion, they are all bubbling up inside me twenty four seven. Each day I’m left waiting feels like a lifetime as my mood plummets to depths I dare not think about. I am constantly walking a tightrope, a thin sliver of hope preventing me from falling apart at any moment. Tears and anguish are never far away at the moment. 

So, whilst I am truly desperate for MY surgeon to do the operation, I told the waiting list coordinator I would accept treatment from another surgeon. In fact, my exact words were ‘I’d let anyone do it. As long as they have a scalpel and a will to do it, I’m in!’ 

That’s actually how I feel now. The desperation to get it done outweighs the need for my doctor to look after me. But, even with my flexibility, it’s not that simple. A surgeon cannot simply be assigned a case and told where to cut. Surgery doesn’t work like that. Each different surgeon has to agree to the merits of the case. They need to read the file and understand why the patient was offered that road of treatment. With my health problems being so rare, that’s not guaranteed for me. I worry my notes could be passed round, with each doctor refusing to do the surgery. In the meantime my surgery date with the doctor I want is getting further and further away. 

So I wait. I wait and I worry. I wait and I cry. I wait and I grit my teeth and attempt to cope with the pain. 

Such is life on the waiting list. 

The Surgeons Decision. 

The Surgeons Decision. 

If you follow my blog you may remember the impassioned email I wrote my surgeon. I was honest and brutal about the difficulties I’m facing thanks to my prolapses; basically I begged him for help. He responded. Soon after I was sat in his office and given three options to choose from, repair, permanent irrigation tube or, stoma. After a lot of research and soul searching, consultations with my GP and POTS nurse, I decided the stoma was the right decision for me. 

A few weeks ago I saw my surgeon again. I told him how my issues had worsened. Seemed to be worsening each day. He began to suggest re doing tests I’d had months earlier. A year or more earlier in fact. I took a deep breath and stopped him in his tracks. 

No more tests. No more thinking. No more suffering. I told him I had made my choice and was ready for surgery. My voice shook as I spoke of the research I had done and my reasons for choosing this route. I spoke of the impact on my life each surgery could have and how my previous ‘fix’ of one of the prolapses has already failed. Failed to the point of being worse than it was. I made it very clear that I knew the pitfalls as well as the positives of having a stoma. This is in no way the ‘easy’ option. There was no easy option to choose. All were fraught with complications and changes to my life. It is just that this path gives me more chance of change. Of no longer suffering with pain in my stomach and back all the time. Of not living my life around my bowel. 

Eventually I stopped talking. I sat there, shaking, awaiting his response. ‘Right, we will get you on the list for surgery then.’ 

HE SAID YES!!

He agreed. Immediately. No more appointments. No more tests. I would be put on the waiting list for surgery! Not only that, but he decided to do an ileostomy rather than a colostomy. This will bypass all of my large bowel, hopefully bypassing all my problems with it! He’s going to do a keyhole loop procedure for now, if that still leaves me with pain from the prolapses then he will consider a larger procedure at a later date. I can understand that decision, after all I do have a bajillion things wrong with me. Why have a huge procedure when a relatively small one could do the job? A procedure that only takes forty five minutes will hopefully change my life completely. 

He left the room to get the required paperwork and I dissolved into a puddle of tears. My friend comforted me as I sobbed. My tears weren’t sadness; they were relief, joy, fear and excitement all mingled into one cocophany of emotion. As each breath rattled through my lungs I felt a weight lifting from my shoulders. Soon, within eighteen weeks, it would all be over. I’d be through the surgery and on the road to recovery. I could hopefully start living again. 

But at the same time, I knew it would all just be starting. My recovery. Adapting to a new way of functioning. Living with a bag and evolving my life around that. It was a truly terrifying and liberating thought. 

The surgeon returned and was perplexed at my tears. ‘I thought you’d be happy?!’ ‘I am!’ I exclaimed, explaining the explosion of emotions overwhelming me. As I left I hugged him and thanked him for saving my life. Because whilst the problems with my bowel aren’t at the point of killing me, they are stopping me living. Hopefully, with this change, I’ll be able to take part in my own life again. 

NB. During the appointment my surgeon spoke of how refreshing it was to have a patient be so open and frank about their condition. He really appreciated my in depth emails. Whilst it is not always possible to write to a doctor directly, we can advocate for ourselves during our appointments. As a patient, I urge you to research your condition and your options. Take notes to appointments if needed so you can speak clearly about your problems and the way you want treatment to go. NOBODY knows more about your body and your life than you, you are the expert in that field, so be confident in yourself. If you’re not happy with treatment plans, request another opinion. This is your body, it is you that has to live with the treatment being offered. You cannot simply end a shift and walk away from things, so advocate for yourself. Always.