Posted on May 21, 2022
After I was diagnosed with Hypermobile Ehlers-Danlos Syndrome, my Mum and I did quite a bit of research. There were a lot of things that suddenly made sense and one thing that caught our attention was mention of autonomic issues, like dizziness, fatigue, chronic pain, brain fog, problems with heart rate and blood pressure… These were all problems I’ve either struggled with or had investigated in the past so, with the hEDS diagnosis and the help of my GP, we started following that path to see if it yielded any answers.
As you can see, this post has been a long time in the writing. I didn’t want to post anything until I had something to say really, beyond descriptions of the tests, but then it all just went on and on and on. Everything moves so slowly and it’s very draining. I have to hope that things are better for knowing what I’ve learned from all of this but it’s also been a very trying, sometimes traumatic experience.
It began with a phone call appointment with a neurologist, a specialist from a neurology unit in London (which I talked about in this post). It wasn’t a fun experience. The call came two hours late, it wasn’t the person it was supposed to be, and then he spent twenty five minutes of the half hour call telling me that there were tests that they could do but that they’d probably be a waste of time. It just left me feeling really confused and upset. He had eventually said he’d write to my GP about doing some tests but after the way he’d been talking, I didn’t feel very hopeful about it all. After he hung up, I didn’t quite have a meltdown – it was like I didn’t have the energy that a full on meltdown requires to happen, like a rocket needing a certain amount of fuel or whatever to launch – but it was close.
Despite his apparent reluctance, the neurologist did in fact write to my GP and the blood pressure monitoring was arranged. It took forever – I think because of a shortage of the monitors – but the day did eventually arrive (I wrote more about it in this post). I went to the hospital to have the monitor fitted and to get all of my instructions; the whole thing was relatively chill (not my general experience when it comes to the medical field) and the two women who went through it all with me were really great.
It wasn’t too bad. The cuff got very tight so it was hard to forget it was there and just do the day as normal but it was fine. I did find it hard to get to sleep but the squeezing didn’t wake me up, which I was grateful for. My arm did hurt like hell in the morning, like I’d been punched repeatedly; I was convinced my arm would be bruised afterwards but it wasn’t. I couldn’t get the monitor wet so I couldn’t have a shower until after I returned it but since that’s usually when the blood pressure related symptoms present, we faked a shower: I stood for the same amount of time in the bathroom with the shower on (so that the hot, steamy environment was the same as if I were having a shower) and let the monitor take its readings. I felt shaky and dizzy and lightheaded so it should have read as if I really had had a shower.
I got through the rest of the twenty-four hour period and then took it off, to my great, great relief. My arm was sore from the squeezing and the cuff was pinching in various places. I also had that Autism thing where the constant pressure for so long was causing me anxiety, like wearing my retainer for too long. The anxiety had been growing for most of the second day so I was very relieved to be free.
The second round of monitoring involved a little stick-on patch with sensors over my heart, which had a little monitor that could be attached (and then detached for a shower) to measure my heart rate. I was supposed to wear it for a week and while it wasn’t exactly comfortable and sleeping with it attached wasn’t great, the first few days went smoothly for the most part.
But, after several showers, the patch started to peel off. The sensation of it constantly brushing my skin and the itchiness of the glue (or whatever it is) as it disintegrated was quickly overwhelming and I was regularly finding myself in meltdown territory. It was creating so much anxiety that we got in contact with the people who’d sent it and they said that after roughly four days of readings, it would be fine to take it off, that they would have enough data. Removing it actually really hurt and I think me and my super sensitive skin had some kind of reaction to the adhesive because it kind of looked like I’d been burned where the patch had been for a couple of days after.
Alongside the blood pressure and heart rate monitoring, there were a series of other tests but it was a while before I got the letter to tell me that they’d been scheduled. The first of the two appointments was in August and was a bit of a mixed bag as an experience. Despite the letter from my GP that said I’m autistic and have an anxiety and therefore need to have someone with me for hospital appointments, the receptionist almost didn’t let my Mum come in with me. I was somewhere between walking right back out and having a panic attack (said receptionist actually asked me if I was okay, which I thought was a bit rich) but fortunately it was all sorted out and after a little bit of time to collect myself, the testing went ahead. The doctor for this particular appointment (I don’t think I’ve seen a single doctor more than once through this entire process) was nice and didn’t rush me at all after the somewhat upsetting start.
The testing was fairly straightforward. They wrapped me up in monitors (I’m not going to lie – I kind of loved all of the hand ones for taking my pulse and stuff because it kind of felt like I was having superpowers measured or something, which was much more fun to think about) and then ran me through a series of tests: standing for certain periods of time, breathing exercises (which reminded me a lot of the warm up exercises I used to do during singing lessons), squeezing an inflated pressure cuff (my hypermobile fingers made this one pretty difficult), and so on. There was still the tilt table test to go but I had to come back on a separate day for that one.
Just like with the day of blood pressure monitoring, they didn’t tell me anything about the test results. Once they had all of the data from all of the tests, they’d call me in to discuss it all. I could understand that but it was frustrating when the whole thing was taking so long.
Late September, I was back at the hospital for the tilt table test. I was all wrapped up in the monitors again and they strapped me (not uncomfortably) to the exam table so that when it moved from horizontal to almost vertical, I wouldn’t slide or fall. Everything was fine while I was lying down and they got all of their readings and then they adjusted the table so that I was almost upright.
It took about twenty five minutes before I started to feel noticeably bad. Like, more than just not great. My hands felt numb and tingly, my legs were shaky, my chest started to hurt and I got very breathless; they let me take my mask off (everyone else was still masked and I’d tested negative before going to the hospital) but I was still breathing too fast, on the way to hyperventilating. While they had an approximate end time for the test, they decided to stop there; presumably they had the information they needed and I was honestly relieved to lie back down for a few minutes. I was breathless for a long time, my head hurt, and I was pretty nauseous. I had to sit for about ten minutes before I felt solid enough to get up and back to the car.
A week later, we were called in by the cardiologist to go over the results. It was a frustrating appointment: my information wasn’t there and we had to wait while the doctor called around and tried to get a hold of it all and then, when he got it, he waffled a lot without really saying anything so getting a clear explanation wasn’t easy. As far as I can tell, my heart rate goes a little haywire when I stand for a long time or exercise too vigorously. The cardiologist diagnosed me with Postural Orthostatic Tachycardia Syndrome and prescribed me Propranolol to help with the symptoms. I’m not sure we’ve managed to get the dosage quite right yet but it is now in the right range and has been helping a bit: I’m less dizzy and breathless although that hasn’t gone away entirely (yet, hopefully).
We had been offered more thorough testing at UCLH in London and we figured that it couldn’t hurt to have more information, especially from an institution that apparently has more knowledge and understanding, better resources, and so on. I was in and out of there for two days (ish), doing tests and helping them gather data on whatever weird thing is going on with my autonomic system. It was a lot but I was cautiously optimistic that what we learned would make managing the symptoms easier.
DAY ONE – We had to be there super early, which was a real struggle because the ADHD meds were seriously messing with my sleep, but I did somehow make it on time. Despite my doctor’s letter, the people at the desk and then the nurse didn’t want to let my Mum in with me. I was ready to walk out – I’ve been traumatised enough times by medical personnel that I wasn’t keen to add another tally mark to that particular chart – but Mum managed to talk to them and get them to understand. I was fitted with a blood pressure monitor, like the one from my first test, and gave me a diary to keep for the next twenty-four hours. It was similar to that first test but it required a lot more detail in the recording: I had to do certain activities at certain times, which were recorded by the monitor. It was quite a stressful and exhausting day, with the monitor bleeping continuously. I was incredibly tired (I fell asleep on the sofa more than once) and I struggled to keep up with the activities they wanted me to do – it feels like the ADHD meds have fried my brain somewhat. And then, because my sleep was so messed up, I didn’t get to sleep until after three.
DAY TWO – Waking up and get to the hospital for eight am was excruciating and the fact that I was only about ten minutes late was a miracle. Fortunately, they weren’t completely on time either. The testing that day was all done in the hospital, in one room, with one woman who was, fortunately, really nice. I spent most of the appointment lying on the exam table, hooked up to various monitors and performing different tests. Quite a few were the same as the first tests I did but there were some new ones too, like having my hand wrapped in an ice-pack for what felt like ages (although it wasn’t actually that long but my god, my hand hurt afterwards). She tried to draw blood for additional information but she couldn’t get a vein in either arm (I think that may have been due to the fact that I’d been lying down for a couple of hours at that point and so my blood pressure was weird but I’m not a doctor so what do I know) and that was uncomfortable with nothing to show for it but oh well; it apparently was a bonus if they got it.
The last part was the tilt table test and I wasn’t as affected as I had been the first time I’d gone through it but it still wasn’t pleasant. And after that, I was done. After lying (and then standing) in one position for so long, I was really stiff and my hip and knee joints were so sore that I could barely walk. I was absolutely exhausted. I made it back to where we were staying and fell asleep on the sofa straight away. I woke up for food (I hadn’t been able to eat before the appointment) and then went straight back to sleep. I was utterly drained and it took me a few days to recover fully.
Again, they didn’t have all of the results for me at the end of the appointment: those would go to the team meeting that was within the next two weeks and then they would call me with a plan, another appointment, or whatever. I think it’s safe to say at this point that my expectation of it taking more than two weeks was correct.
UCLH sent a letter with a brief explanation of their findings and a time for a follow up call where they would explain those findings in more detail and discuss next steps. That took a while to schedule because of other commitments so it didn’t happen until May.
It was a short call but the nurse was really nice and so knowledgeable. She ran through the test results and what they showed and confirmed the diagnosis of Postural Orthostatic Tachycardia Syndrome. She explained the effects of the Propranolol in more detail and said that I would be receiving an invitation to their next online meeting about managing the symptoms of POTS, which will hopefully be helpful. And on top of that, she gave me a few tips to try in the meantime. So it was a good appointment and I’m looking forward to seeing if her tips help and to the meeting, which should be within a couple of months or so.
So now I’m waiting to hear about the online meeting. I haven’t had many good experiences with sessions like these but I’m nothing if not chronically optimistic; maybe this one will be better. But just knowing that POTS is the cause of the symptoms is a step forward. And the Propranolol seems to be helping although I’m not sure that we’ve got the dose quite right yet.
I wanted to write and post more about Borderline Personality Disorder during BPD Awareness Month but I’ve been really struggling with my depression and changing medications and it’s all been a bit too much; I’ve found it hard to write anything at all. I’m still trying and hopefully I’ll have something BPD related up next week, plus I have a few other posts that I’ve started that I hope to finish and post in the not too distant future.
Posted on May 14, 2022
I have to admit that I often struggle with Mental Health Awareness Week, particularly the flooding of social media with “it’s okay not to be okay” and “reach out to someone if you need help”; it makes me want to scream in frustration because we are so far past that. If we’re going to create better support for mental health, we need more than that. This year, the theme is loneliness, which is an apt one, two years and change into this pandemic. I’m certainly seeing a lot of loneliness around at the moment: those with mental health issues, disabled individuals, people who are still shielding and feeling abandoned by society because of the dropped mandates… I can’t imagine what it’s like to be in or from Ukraine right now…
All of these situations need to be talked about and since the Mental Health Foundation is encouraging everyone to share their experiences with loneliness for Mental Health Awareness Week, I thought I’d write about my experience, as a disabled person with mental health issues.
This is something I find kind of hard to talk about. I guess talking about it – and writing about it – makes me feel a little guilty because I’m not alone. I know I’m not alone. I have a great family and some really wonderful friends who have been there for me through some really tough stuff. They try so hard to make sure that I don’t feel alone. Fortunately, we – as people – don’t need to understand each other’s experiences point for point to find friendship and create those important, supportive bonds: I have a friend who has experienced very different trauma to me but there have been a lot of similarities throughout both of our journeys that have made it possible for us to relate to each other. I’m grateful for that, more than I can say.
But it’s also true that I do, often and increasingly, feel alone, feel lonely. And I think that that’s because no one – no one I’ve found at least – really understands what it’s like to be in my head, in my body, in my life, dealing with the problems that I have and the ripple effect that they can create. I’ve had multiple doctors and medical services simply stop helping me (or refuse to help me at all) because my case is “too complicated.” These are the professionals – the people who are supposed to really know and understand this stuff – and even they don’t know what to do with me (and those abandonments, plus other abandonments in my life, have left me with a lot of issues and fears that I have to work on every day). I think the issue is compounded by the fact that I have multiple diagnoses so, even though I may fit into the autistic community, I still don’t feel like I fit in because I also have OCD and BPD and so on; I can’t imagine there are many people who fit into the same community as me when the criteria is so narrow. I’m also not entirely convinced by the idea of community based on diagnosis either, to be honest, especially when the diagnosis covers such a range of symptoms, behaviours, and experiences, like Autism Spectrum Disorder. Anyway, my point is that I don’t feel like I fit in, even with the people that, on paper, I would likely get along with.
As I said, I’m not alone. Even though I’ve never felt like I quite fitted in, I have some great friends and friends from all areas of my life: school, sixth form, uni, Masters, as well as stuff outside education… But I can’t always keep up with my friends, with my peers, and I can’t always do the things I wish I could and I find that so hard. I always end up feeling like there’s a gap between me and everyone else and it’s lonely. Not being able to physically keep up with those around me means that I often feel left out – even if that’s nobody’s intention. And there’s a level of embarrassment and shame about being the one who can never keep up, the one who is always asking people to wait, always having to double check or change or cancel plans. I don’t know where that comes from – I know my friends would never want me to feel like that. But still, it’s there. It widens the gap and it makes that loneliness worse.
The older I get, the more I notice it – the gap. While I spend my time trying different medications, going to appointments for my physical and mental health, and resting after doing what I can manage to do, a lot of my friends are pursuing PhDs, establishing careers, living independently, and building lasting relationships. Our life experiences are just so different. And the longer it goes on, the bigger the disconnect feels. It just feels like the future is full of loneliness and I don’t know what to do with that.
I know this is kind of a depressing post. It’s a depressing truth, although it might have come out differently if I weren’t coming off my antidepressants; if I were in a better place mentally, I might have a more hopeful outlook. I don’t know.
I don’t think it’s a bad theme – loneliness can have a devastating impact on a person’s mental health – but the Mental Health Foundation’s website says that they want to “shatter the stigma around loneliness” and while I can’t say that there’s no stigma associated with loneliness, I can think of so many things that might have more impact as a theme, might make more of a difference, like access to mental health support or the impact of social media or… I don’t know, something more specific than loneliness or nature (last year’s theme). (I talked about this more in my Mass Observation Day post.) As I said at the beginning of this post, I find Mental Health Awareness Week difficult because I so often feel like the information being circulated is somewhat obvious, that we could – and should – be going deeper. I guess it all just feels a bit surface level but I don’t know how that changes, if anyone else even feels this way. It just doesn’t feel like enough. It’s one week a year and it doesn’t feel like enough.
Posted on May 13, 2022
It’s the 12th of May again, which means it’s Mass Observation Day! Every year, the Mass Observation Archive asks people to keep a diary for a day to record the everyday lives of those in the UK. I’ve written diaries for most of my life and I love the idea of pulling together all of these accounts in order to get a picture of an ordinary day in the life, whatever that might look like, for people in the UK. It’s like putting together the pieces of a puzzle. So here is my piece.
Some important things to know before reading: I’m autistic and live with Depression, Generalised Anxiety Disorder, Obsessive Compulsive Disorder, and Borderline Personality Disorder. More recently, I was diagnosed with Attention Deficit Hyperactivity Disorder (Inattentive Type), Hypermobile Ehlers-Danlos Syndrome, and Postural Orthostatic Tachycardia Syndrome. I’m currently in between things: I finished my Masters Degree in Songwriting and am currently working on my next project for release but, at the same time, I’m trying to get my health (physical and mental) into a more stable place.
It wasn’t (and wasn’t ever going to be) a busy day. I’m halfway through getting off Moclobemide, my most recent antidepressant, so I’m trying to be gentle with myself; I’m trying not to push myself too hard. I’m also trying not to give myself a hard time for not doing more – with varying degrees of success. There’s just a lot going on at the moment, health-wise.
I had a bad start to the day in that I slept really badly, which has been the not so new normal ever since I tried taking medication for my ADHD. Even though I stopped taking them months ago, my sleep still hasn’t recovered fully. Between that, my chronic pain, and the crying baby next door, I didn’t get to sleep for a long time and woke up repeatedly. I didn’t really feel like I’d ever really gone to sleep, to be honest. I woke up around half ten (which is actually pretty good for me at the moment, what with the off kilter sleep schedule) because next door were having their deck worked on and the noise was too much to ignore.
There’s so much pain when I wake up in the morning at the moment. It’s awful. I can’t do anything until painkillers have kicked in and after feeling all of that, I’m generally pretty exhausted. I lay in bed for a while, reading until I felt like I could manage a shower, something that’s especially difficult at the moment as the pain is worst in my arms.
By midday, I was settled in the living room with my laptop. I had a couple of hours before a Zoom session with Richard (one of my best friends, my writing partner, my producer, and more) so I got to work. There were a couple of tracks that I needed to sign off on before they went to be mixed and mastered so I listened to those and did sign off. That done, I worked on a couple of upcoming blog posts until it was time for the Zoom session.
We caught up a bit since it’s been a little while since we last saw each other (although we frequently text each other silly jokes and pictures) and then we got down to business. [While I will be including the details in the version of this that I send in to the Mass Observation Archive, I don’t want to give away the details of new music. I will say that we worked on two tracks that I plan to release soon and discussed another bigger project that will be coming, hopefully, in the not too distant future.] All in all, it was a productive session.
I took a break after that. I put Harrow on (it’s been added to Disney+ so I’ve been rewatching it over the last few days) before having a quick check in with social media and then spending a bit of time reading.
It took a while to reel my focus back in but then I spent a couple of hours working on a couple of different upcoming blog posts. For some reason, my Mental Health Awareness Week blog post has been a struggle right from the start and I still haven’t finished it. I think I’m anxious about getting the balance right, of writing about the loneliness (the theme this year) without sounding ungrateful for the people I do have because I really am so grateful for them. I also just find Mental Health Awareness Week hard, with social media overflowing with vague, trite advice – advice that was vague and trite five years ago. I know it’s Mental HEALTH Awareness Week and not Mental ILLNESS Awareness Week but mental illness is part of mental health and I just feel like this should be a week (and don’t get me started on the fact that so many people and organisations only talk about mental health during this one week of the year) where every part of mental health and mental illness can be talked about, not just the ‘socially acceptable’ parts. But it isn’t. It doesn’t feel safe to do that. Loneliness isn’t a bad theme: loneliness and isolation are real obstacles to staying mentally healthy, to the point where it can be considered trauma. I guess I just feel like Mental Health Awareness Week isn’t enough when you’re trying to stay afloat in the ocean that is mental illness.
I had to stop working on that post after a while. I was just getting too frustrated. And then it wasn’t long before I was interrupted by the announcement of dinner. For those of you who don’t know, I live with my Mum but I have three other parents that I don’t live with. Anyway, one of them came over for dinner – something we do roughly once a week – and we had a good hang out and catch up. Sometimes we watch a movie but since neither she nor I were feeling great, we didn’t this time.
When she left, my Mum and I continued watching Harrow (she loved the show too) and I did another hour or so of work on blog posts – I’ve got a couple that I’ve been pulling together for a long time that I’ll hopefully be able to post soon – before moving over to my diary. Which brings us back to this post.
It wasn’t the most interesting day but I guess that’s kind of the point. It’s a normal day. And this is what normal looks like for me, this week at least. Who knows what next week will look like.
If you keep a diary or want to write down some thoughts about what your 12th May looked like, the website is here, where you can submit your diary entry and learn more about this and their other projects.