If only we had realised

The start of her current health crisis

We go to a playground at least twice a week - this photo was taken on Friday. Olivia mainly goes for the big swings (she is a champion swinger), but her absolute favourite thing is to lurk at the bottom of a tube slide and watch little kids shoot out. Much to their surprise! If she was a bloke we’d have to stop her as it would look creepy. But she just wants a high-5 off them.

Playground stats:
Playground visits I’ve ‘enjoyed’ in my lifetime: c3000
Playground visits Olivia has enjoyed in hers: c7400
Local playgrounds currently visiting, on a rota: 10
Best swing in Exeter: Cowick Barton playing fields

She can be hard to move on from the end of a slide. And she doesn’t quit if it starts to rain, even torrentially.

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All remains calm here. We are now on Day 14 of Olivia being happy, well and firmly between periods. Usually this phase lasts anything between 10 and 18 days, so we’re on high alert. It’s been nearly 3 years since she first developed symptoms, and a year since she got seriously ill. I still haven’t told you about the start yet, seem to be pinging about in time more than I planned, so let’s go right back and get things into context.

Just to say - writing this part was not easy, it’s hard to look back knowing what I do now, ‘the retrospectoscope’ can be painful to look through. But I’m hoping cathartic too.

Diary, November 2022, Kent

Weds: Olivia has woken up in a very odd mood, she would normally be excited for her disco tonight but she’s not interested and is off her food (very unusual). She doesn’t want to get dressed. She’s not verbalising or smiling. She hasn’t done a poo for several days which might be the problem?
Teatime: Threw her plate of pasta at me. Even when she had Covid she still ate pasta.
Thurs: Same as yesterday, calpol seems to help a bit.
Thurs evening: She took off all her clothes, shut herself in her room and started to break things. She has never done this before and it’s scary. She then did a poo which without a nappy on went everywhere. Her dad put his head round the door to try and calm her but she screeched and launched herself at him, then took a large picture off the wall and threw it at him. He has a big scratch down his face. We retreated, sitting on the stairs for an hour after which she let us in to clean the worst up. But she then stayed awake most of the night shouting. The violence is really worrying, something must be badly wrong. I rang 111 who told me that, as it was difficult to communicate with her, best to contact our GP in the morning, who she knows and trusts. I didn’t think she was safe to put into the car, and she would be frightened by an ambulance.

Friday: Rang GP who thought it was probably pain caused by constipation, which Olivia can suffer from. He gave us laxatives and referred us to a gastroenterologist. Waiting time: approx 12 months.

Sunday 5pm: In an effort to get her out of the house and get some food into her, we drove to McDonald’s, her favourite place in the world. If you’d told me Before Kids how much money/time I would give the Golden Arches in my life I wouldn’t have believed you. We had to pull the car over half-way there as she had an unprovoked meltdown - kicking, grabbing my hair - and it was dangerous to drive. It was snowing but I’ve never exited a car so speedily. Olivia needs space if she’s unhappy, she can usually sort herself out given time on her own.

We were stuck by the freezing roadside with our coats in the car. If we gingerly tried opening any of the doors, Olivia went ballistic – kicking the door shut and hitting out at us. We watched as she climbed around inside the car shouting, and wondered if she could accidentally take the handbrake off or set off the alarm. After 20 long minutes, she managed to climb over into the boot and then was unable to get back across - luckily for us she’s severely dyspraxic. So we quickly got into the front seats and drove the 10 minutes back home. She allowed herself to be led quietly into the house.

December: After a week or so, Olivia has started to gradually improve, but she continues to have problems with her bowels. The laxatives do seem to have made her a bit more comfortable though.

January 2023: We rented an expensive AirBnb in Devon to have Christmas near my family, but she was miserable and didn’t want to go out, even to see her beloved Grandad or cousin, or go to her favourite beach.

November – March: Olivia hasn’t had a period this entire time. I keep ringing the GP and Bowel & Bladder team, we are trying different laxatives and dietary changes, and wondering why nothing much is working. We are all waiting for the hospital appointment which keeps being pushed back.

June 2023 - First meeting with hospital gastro team. She was as good as gold but wouldn’t let anyone actually touch her. They have put her on a waiting list to come into the hospital for a general anaesthetic in order to have a bowel scan. Great! But the waiting list is over 18 months long. I raised the issue of delayed periods. They said this was ‘almost certainly due to the stress of her gastric issues’. Didn’t occur to us to question this at all - I look back at this with my head in my hands.

Eventually we moved house to Devon in summer of 2024 before anything had happened beyond this initial consultation.

We will much later (July 2025!) discover that during this first meltdown episode, she had actually contracted an infected fallopian tube. As this was not treated, it kept swelling and this distention put pressure on her other organs, twisting one of her ovaries and affecting her abdominal wall and bowel. This was causing agonising pain especially during her periods.

I’ll wait for hours until somebody comes out.

Next time: we move into a giant damp sponge of a house in Devon. A new local authority, the fight for education, the fight to get Olivia scanned. And could it - just perhaps - be gynaecological?