Finding HopeA Four Month Detour…
Posted on December 24, 2025
I really didn’t mean to abandon this blog but the last four months have been completely miserable, healthwise.
Less than a week after I last posted, I started experiencing what felt like electric shocks in my lower back. It was so painful that, at times, all I could do was scream. Even when the electric-shock-like spasms weren’t actively happening, I was in – quite possibly – the worst pain I’ve ever experienced. And given my experience with chronic pain, that’s saying something. It was horrendous, especially as the painkillers that usually give me some relief weren’t having any effect. Eventually I managed to get some stronger painkillers from my GP and they were so strong that, for the first few days, I could barely keep my eyes open: I was asleep for around twenty hours each day. Thankfully, that did wear off after a while but I still felt slow and blurry while taking them.
It was a completely new kind of pain for me and while we had a few theories from the network of health professionals I’ve worked with, we still didn’t know what was causing it, how long it would go on for, or if it was a permanent change. The massage therapist I’ve done some work with – who has both personal and professional experience of Hypermobile Ehlers-Danlos Syndrome and chronic pain – was a godsend and thankfully, my Mum found a new physiotherapist nearby who had professional experience with hEDS and who was able to come to the house to see me. He was fantastic: he was thoughtful and thorough and explained everything with great care (sometimes multiple times); he really listened to me and took my priorities into account when choosing the exercises for me to do; I felt like he actually cared about me as a whole person, which has not been a common experience. He assessed me and felt that I had a pinched nerve in my lumbar spine, which typically heals in about eight to twelve weeks. That felt like an interminably long time but I was relieved to hear that he expected the pain to go away. He gave me some very gentle exercises to do as I felt able to, with the goal of strengthening the muscles in my back to support my especially hypermobile lumbar spine (and hopefully reduce my chronic pain). Between the pills (despite the side effects), the massage, the physiotherapy exercises, and the time that I was forced to take to rest properly, the pain finally started to decrease and I was able to slowly increase my mobility – I’m still working on that.
Unfortunately that was only the first part of the story. In early October, I started to struggle with multiple symptoms that I’ve rarely experienced, including stomach pain, nausea, acid reflux, and difficulty swallowing. It made eating so difficult that I could barely keep any food down and it made sleeping difficult because I felt worse when I was lying down. I felt awful but my Mum had been unwell a week or so earlier and so I assumed that it was the same thing and would pass relatively quickly; I thought I just had to rest and wait it out, like I often do with a seasonal illness or the symptoms of my chronic illnesses. But that didn’t happen. The symptoms got more intense until I wasn’t eating at all – sips of water were all I could manage – and the POTS symptoms I experience everyday had become debilitating. I hate going to the doctor but if there was ever a time, this was it.
I managed to get an appointment with one of the GPs pretty quickly – not my usual GP but that isn’t unusual and I did manage to get an appointment with her for later in the week – but when I explained what was happening, this doctor said that there wasn’t time to explore each of the symptoms so she questioned me about the difficulty swallowing, prescribed me a medication, and sent me on my way. I was deeply unimpressed and had no confidence in her diagnosis or the medication: treating one symptom when several are presenting at the same time… that seemed very unlikely to help whatever was causing the multiple symptoms. I’m passionate about the NHS (and about improving it) but it’s not exactly straightforward when I’ve been repeatedly invalidated and mistreated by medical professionals.
I didn’t have time to even take the medication before the stomach pain got so bad that I couldn’t move. We ended up calling 111 and their recommendation was to call an ambulance and head to A&E. The idea of being in an ambulance – as an already overstimulated autistic person – felt horrific and I almost had a meltdown; I didn’t know what I was supposed to do when I felt like I could barely move. Eventually my Mum had to all but drag me into a cab to go to A&E. For once, being autistic was a help rather than a hindrance because the receptionist moved us straight from the initial waiting room into the actual A&E department where people were being assessed and treated. We still had a considerable wait ahead of us, which felt incredibly long given how much pain I was in. It wasn’t exactly a restful environment either: besides the patients and nurses coming in and out, there were paramedics and police and one young woman who cried the entire time she was there. If I hadn’t been in so much pain and so overstimulated, I might’ve been impressed – and a lot more sympathetic. But I was running on empty and on the edge of sensory overload and all I wanted was some quiet; it was a rough night – for everyone clearly.
After a couple of hours, several different nurses did a series of tests, including taking blood and doing an ECG (during which my cannula from the blood draw was jostled, leading to the bruise pictured below – that hurt for a while). A little while later, another nurse gave me a low dose of morphine that did, thankfully, slowly bring my pain level down. But after that, we were left for several hours; even when we were the only people left in the little waiting area, no one came for us or even gave us an update. I was starting to think we’d been forgotten about.
When a doctor did finally call my name, he didn’t have any real answers for me. He did at least have a reasonable understanding of hEDS and how it can cause strange or skewed test results: a hEDS body does not react to anything the same way a non-hEDS body does, surprise surprise. So there was no obvious explanation for my symptoms but he prescribed antibiotics and recommended getting a referral to the hospital’s Gastroenterology department if the symptoms weren’t resolved by the antibiotics. I don’t love the approach of just throwing medication at a problem and hoping it helps but I was desperate and that was the only option being offered.
(Left: the bruise left by my cannula, having being knocked during A&E tests // Right: me, asleep on the sofa the day after the night spent in A&E with Izzy keeping me company)
We got home around seven and I was asleep the moment I lay down on the sofa. I was just completely exhausted. I took the antibiotics I’d been prescribed but then, when I saw my actual GP, she was surprised by how high the dose was, adjusted it, and prescribed another antibiotic, as well as sending the referral to the Gastroenterology department at the hospital. Again, it wasn’t exactly reassuring since we still didn’t know what the actual problem was and I was starting to spiral a bit about the possibility that this was more than just a passing illness, that it was something much more serious that was getting overlooked (with the potential to lead to an even more debilitating outcome). But I tried not to go down that rabbit hole. I was trying to at least give the various medications a chance to work.
Over the next few weeks, I just lay on the sofa and tried to eat when I felt able to. Between my body trying to fight whatever was going on and the fact that it was trying to function on very little fuel, I was barely able to do anything. I was forced to rest, to literally just rest; I couldn’t even do the most passive of activities. I was physically, mentally, and emotionally exhausted. My body and my brain were barely functioning: a good day consisted of a shower and watching TV (and eating what I could). But the medications started to work and, very slowly, I started to feel better and the symptoms started to decrease in intensity, even if I was still building back up my capacity after so long with so little fuel in my body. And then, just as I was finishing the courses of medication, I started to feel actually well again and I don’t think describing my mood as “overjoyed” would be an exaggeration. Eating went from being a struggle to being joyful (a word I don’t think I’ve ever used in the context of eating) and I was sleeping well, not only for the first time in weeks but in months: I was feeling so good that it felt more than a little surreal but I wasn’t complaining. It was a huge relief after eight weeks of feeling so terrible.
But less than a week later, the symptoms started to reappear and I started to feel really unwell again. I had bloodwork done (which had been ordered way back when I’d first gone to the doctor) but all of the tests came back fine or inconclusive again. I was wondering if the medications had been treating just the symptoms and not the underlying issue, which made me deeply anxious about what that underlying issue could be. I wasn’t sure what the next step was supposed to be but I’ve had a lot of conversations with a lot of different people in my various circles and, long story short, it seems that these digestive issues were a delayed response to the increase of one of my long term medications: some (professionally guided) experimentation has proved as much as is possible that my digestive system can’t handle this medication over a certain dosage so I’m currently taking a break from it (which is something you can safely do with this medication) while getting my food routine and some of my energy and strength back. After Christmas, or maybe the New Year, we’ll reassess and I’ll likely start taking it again at the lower dose since I had had a positive experience with it until that final dosage increase.
So that is where I’ve been: too sick to do anything, too sick to even write a blog post about being sick. When I say it’s the most unwell I’ve ever felt, I’m not exaggerating. I’ve dealt with a wide range of symptoms and various levels of pain during my life but never have I been so ill, in the way we typically picture illness. I’ve dialled everything right back to absolute basics and I am starting to feel a bit more normal, despite a few bumps in the road. Fingers crossed, I’ll be feeling more like myself again by the time the New Year rolls around…
Blog Note (23.08.25)
Posted on August 23, 2025
Thank you to the approximately two thousand people who visited the blog on the 16th and 17th August. I’m not sure why you were all here since the metrics only show me that you visited the Homepage (and I’m assuming scrolled down from the top) but you’ve left me very intrigued. Regardless, thank you for stopping by and I hope you gained something from your visit.
Autism Dogs – Delivery!
Posted on July 12, 2025
After my last visit to the Autism Dogs farm in mid February – my anxiety had prevented me from being able to do Daisy’s public access and family training and they accommodated me wonderfully with a new co-created plan that we hoped would work better – it was about three weeks before Daisy was delivered. One of the trainers brought her down and stayed for two days – this is called Delivery and is usually the last part of the process but isn’t for me due to the accommodations they’ve made for me around the public access and family training – while we all got settled and guided us through the basics of having an Autism Dog in your home: we already have a dog and have had a Labrador specifically in the past but, having spent a long time at the farm and being trained by the Autism Dog trainers, it wasn’t the same as bringing a new, young dog into your home. There are habits that we’re going to have to work on, some we need to encourage and some we need to discourage. But I’m getting ahead of myself…
NIGHT BEFORE
I was incredibly nervous about Daisy arriving; I was trying my best not to spiral into a full blown panic but it was a struggle. A big part of it was just that horrible irony of being autistic and hating change and how, when you try to make a change that’s hopefully going to help you, it’s so hard to imagine that it really is going to to help because the change itself is so distressing and so difficult. It feels like, ‘how can this be helpful?!’ And even though I know that that is a big part of it but that doesn’t just turn off that feeling.
I had so many anxieties about Daisy moving in permanently: that she’d chase the cats, that she and Izzy wouldn’t be able to get on, that the change would be too overwhelming, and so on… I was so anxious that I would just be so overwhelmed that I wouldn’t be able to do what I needed to do to enable Daisy to do what she was supposed to do, to support me like she was supposed to; even if she wasn’t fully qualified yet, she was still well practiced in many of her skills. I just couldn’t help fearing that the whole thing was going to be a messy disaster that didn’t work the way it was supposed to and that Daisy would be taken away when I was already so attached to her. I had all of these worst case scenarios in my head that I wouldn’t be able to negate until Daisy was actually there; if she arrived and didn’t chase the cats, then that anxiety would be solved but I couldn’t know that until she was there and so the anxiety just felt never-ending and suffocating.
I had just thought that I would feel more confident by this point. I also thought I’d be in a lot less pain but I’m actually in more pain than when we began this process, which obviously isn’t idea when working with and looking after a dog – and Daisy is a lot stronger and more solid than Izzy (who barely weighs three kilograms). I didn’t want to let Daisy down by not doing enough but moving is so painful that I am really limited. It really felt like being stuck between a rock and a hard place: I stick to my limits and don’t get to do as much with Daisy as feels important to do or I push past my limits to do everything with Daisy and end up in even worse pain. So there’s that but the last few months have been so stressful and all of that was just filling up my brain until it was so overloaded that there wasn’t the space to process any of it or look at it from a different angle or even just breathe. I was trying so hard not to spiral into all of this anxiety because if I did, I would’ve been completely non-functional and I really couldn’t afford to be non-functional with Daisy arriving the next morning.
We’ve had multiple people share their experience with us through the Autism Dogs community and most of them have said that it’s taken time to find a rhythm and a routine that words for the whole household but nobody said it was a complete disaster, which is reassuring. But I was still a ball of anxiety all evening and I doubted that I was going to be able to get much sleep, given my history of sleep problems – especially when my anxiety is high. But I tried. I needed some rest before the two days began.
DAY ONE
It was a difficult day. As predicted, I slept badly so it was a struggle to be up and ready for 11am when Daisy and the trainer, Julia, were due to arrive. So I was anxious and exhausted, which wasn’t ideal. And I was very overstimulated when Daisy and Julia arrived: Izzy was barking her head off at another dog daring to encroach on her territory and Daisy was barking back, although a lot more quietly and gently. Her barks felt more along the lines of ‘What did I do? Why are you barking at me?’ So it was pretty chaotic to begin with but once we’d settled in the kitchen, the two of them started to settle down too, although Izzy was still very bewildered by everything that was going on.
Once everybody was nice and calm, we gave Daisy a tour of the house and Julia checked everything out, just to be sure that everything was safe for Daisy. We’re pretty pet-proofed because of Izzy and the cats but another pair of eyes couldn’t hurt, especially from someone who is very familiar with the routines of the dogs on the Autism Dogs farm. For example, there aren’t any stairs there so going up the stairs (and later down again) was a new experience for Daisy. It’s also true that Daisy is a lot bigger and stronger than all of the other animals – probably combined – so she can knock things over and so on; there are different risks; Julia wasn’t worried though and had some great tips for keeping things secure and out of reach and so on.
That was it officially for the day; the rest of the day was just about playing and bonding and just letting everyone get used to Daisy’s sudden arrival (and Daisy to her new environment). Julia had given her a good, long walk so she wasn’t going to need much more exercise; it was really all about the bonding. So Julia left and it was just me, Mum, and the animals. The cats had vanished, deeply unimpressed by the arrival of a big black dog (that was too excitable and did not have enough control over her limbs and her body in general – she quickly earned the nickname ‘Horse’ for the way she barrels around the house) and Izzy was very unsure, sticking very close to me. The chaos and the noise and the anxiety had pushed me into completely sensory and emotional overwhelm and I just cried and cried until I fell asleep on the sofa.
I was better for the sleep and me, Mum, and the two dogs had a relatively chilled afternoon. I made sure to spend time with Izzy so that she didn’t feel like she’d suddenly been abandoned but I also managed to have some good bonding time with Daisy. She seems to think that she’s the same size as Izzy and that she can fit in my lap, which she cannot, not without either sublaxing my hips or making my legs go to sleep. I don’t really get a choice in the matter though: if she wants to sit on me, she will sit on me. It is very sweet, if not the most comfortable way to cuddle. It was hard though because, when she was wandering around – exploring her new environment and sniffing everything – I just couldn’t concentrate on anything but her, just in case she got herself into trouble. I mean, we’ve had animals safely in this space for years but I couldn’t help feeling anxious that, because she’s a bigger dog, she’d find something to get into that the other animals were never able to; she’s definitely much more likely to knock something over without even realising that that’s what she’s doing. I just could not relax, constantly on watch. I’d cried three or four times, mostly from emotional or sensory overwhelm, and I was frustrated by how little I’d managed to get done, having spent so much time just watching the dogs and making sure that they weren’t getting into any shenanigans. Daisy seemed so discombobulated by her new environment and by all of the new things that were going on that she was barely listening when we – me or Mum – gave her an instruction, even as something as simple as recall or getting off the furniture. It was very frustrating and it just increased my anxiety about how to be a good pet owner to all of the animals, how to be a good handler to Daisy, how to do all of that at the same time. All of that on top of it being a bad pain day (making it hard to do much with her given that I could barely move and that she’s relatively unaware of her own strength), it just took up every grain of energy I had.
All in all, it was a complicated, overwhelming day. I wouldn’t call it a bad day and there were definitely good moments but it was very difficult and an emotional rollercoaster and I was exhausted by the time I went to bed at 11pm – much earlier than I’m usually in bed. I got the dogs sorted, both of them curled up on my bed, and got myself sorted before joining them, not that there was much space for me. But Daisy didn’t stay long: we had a cuddle and then she hopped off and climbed into her bed, still close by. Izzy burrowed closer to me, always game for snuggling as we go to sleep.
DAY TWO
I slept like I’d pulled a week of all-nighters and struggled up, holding up the schedule for the day because I just couldn’t get ready – couldn’t move – any faster. I was already exhausted but I was determined to get through the day so that Daisy could be officially moved in.
Julia, the Autism Dogs trainer, was already there when I got downstairs, enjoying some snuggles from Izzy who she’d completely fallen in love with. Once I was ready to go, I practiced getting Daisy into her harness and her working lead and then we all headed to the park. Because of my pain, we practiced from a bench with Daisy on the long lead. I threw balls for her and we practiced recall and practiced walking on the working lead. She was really, really good and that gave me a bit more confidence after Daisy’s lack of focus the night before.
After about an hour, we headed back home, Daisy having been beautifully behaved (although she did get herself and the long lead wrapped around tree several times). I was tired but we didn’t have much left to do so I pushed through so that we could get everything done and signed off. We ran through each of Daisy’s basic commands and practiced them a few times, including her deep pressure therapy. Izzy gets quite jealous when Daisy does it, when she drapes herself over my lap, but Julia isn’t worried. She’s confident that they’ll find their own rhythm over time: day two was not the day to be worrying about whether they’d ever get along. I know that logically but it does make me anxious because I love Izzy so much but then I also so badly want it all to work with Daisy; all of that is just constantly in the back of my mind.
Confident that we were feeling good about things, Julia left us to it. She’d be back sometime in the next couple of months to do the two days of public access and family training that would make Daisy an official, fully qualified Autism Assistance Dog.
After bidding Julia goodbye, the four of us had a very relaxed afternoon and evening. Daisy and I had some good cuddles and Izzy eventually broached the space she’d been giving Daisy so that she was getting some attention too. Watching them together is already so funny; Izzy can get overwhelmed and overprotective – of me in particular, but also of her toys and her favourite spaces, etc – but while they were both sleepy and cuddly, it was very sweet. Daisy was beyond excited for dinner, as always, which only got Izzy more hyped up and then me, Mum, and both dogs spent the evening chilling with a movie. Daisy was a bit restless: she didn’t have her own bed at the farm – all of the dogs shared beds and sofas and soft spaces – so she wasn’t used to it. She kept getting in and out of it and turning around, like she couldn’t figure how to get comfortable in it (it took her a few days but she worked it out).
We were all exhausted and went to bed early again. And that was the end of day two.
So that’s that: Daisy is moved in. From there, we had a couple of months to bond and build routines and let relationships and boundaries form until Julia came back to do the public access and family training with us.
Finding Hope 