Off to the Seaside… 

Off to the Seaside… 

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

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

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

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


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

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


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

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

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


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

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

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


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

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

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

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

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

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

My Gift. 

My Gift. 

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

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

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

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

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

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

Jaymee’s Battle.

Jaymee’s Battle.

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


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

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

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

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

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

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

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

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

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

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

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


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

I’m fighting a battle. 

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

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

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

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

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

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

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

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

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

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

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

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

Breast is best? 

I want to breastfeed. 

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

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

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

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

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

I languish in bed. Exhausted. Undressed. Useless. 

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