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…