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. 

Fingers crossed for food poisoning. 

Fingers crossed for food poisoning. 

So, recently I went on holiday with my family. We spent a lovely but exhausting week at the seaside in a static caravan. Honestly, I really enjoyed it; but even with rest and wheelchair use it took everything out of me. This became more literal on the Thursday when my stomach started playing up. Literally EVERYTHING was coming out of me, via the rear exit. 

These bouts of crippling pain and bowel evacuation hit me in the early hours of the morning. I woke in the night and after rolling around like a landed seal for a while I gave up and sprinted (more waddled, I’m heavily pregnant) to the teeny tiny bathroom. What ensued will haunt me for life. Three hours of bouts where my body felt like it was literally trying to turn itself inside out. Best of all this cycle repeated for the remainder of the holiday, well past heading home. 

On the Monday I could take it no longer. I called my doctor. In their wisdom they professed it just be campylobacter, and I was ordered to provide them with a sample. Now I don’t want to go into too much detail, but harvesting that sample was quite possibly THE worst experience of my entire life. Bar none. (And I’ve had cameras inserted into almost every produce of my body.) But, like the trooper I am, I did it. My husband, bless his heart, was tasked with delivering said specimen to the surgery. A task only made worth it by the look of repulsion on the receptionists face when he handed it over. 

So, my sample was in, and all that was left for me to do was hope. But here’s the strange part. Unlike most, I was hoping that I DID have the dreaded bug! Crazy right?! Wrong. 

If I had foodpoisoning then it would mean a week or do on antibiotics and it would be gone. Poof!! I’m your face bugs, you’ve been eradicated!! But if not? Well, then it means my body was just doing its usual trick of torturing me. As for treatment? Well that would be none existent. I’d just have to ride it out. 

Results day arrived. Like a nervous teen awaiting exam results I called the surgery. NEGATIVE. No bugs here! There’s nothing messing up my bowel other than my bowel. I was, and still am, gutted. Maybe because she was worried about my other conditions, maybe because my bowel cramps were now causing bear constant braxton hicks, or maybe to placate me, she called me to the surgery. There she poked and prodded and tried to be reassuring. I’m doing all the right things (I know). My baby is probably aggravating my bowel (fantastic, that’s just another two months of hell then). Hopefully it’ll settle once he’s here (I hate the word hopefully). But what it boiled down to was this. There was really nothing she could do. 

So here I am. Living with it. Riding out the waves of cramps and tightenings and daydreaming about only having food poisoning. Oh, how sweet it would be to have a problem that could actually be fixed!