Posted on June 5, 2022
Summer is upon us, although it seems hesitant to commit this year. At least where I am. But we’ve had some gorgeous sun, some beautiful blue skies, and a spectacular summer storm. So I think we’re getting there. And thus I thought I’d share some quotes about summer…
“In early June the world of leaf and blade and flowers explode, and every sunset is different.” – John Steinbeck
“Summertime is always the best of what might be.” – Charles Bowden
“Summertime. It was a song. It was a season. I wondered if that season would ever live inside of me.” – Benjamin Alire Sáenz
“In summer, the song sings itself.” – William Carlos Williams
“One benefit of summer was that each day we had more light to read by.” – Jeanette Walls
“Summers had a logic all their own and they always brought something out in me. Summer was supposed to be about freedom and youth and no school and possibilities and adventure and exploration. Summer was a book of hope. That’s why I loved and hated summers. Because they made me want to believe.” – Benjamin Alire Sáenz
“Working is bad enough in the winter, but in the summer it can become completely intolerable. Stuck in airless offices, every fiber of our being seems to cry out for freedom. We’re reminded of being stuck in double maths while the birds sing outside.” – Tom Hodgkinson
“In the summer, the days were long, stretching into each other. Out of school, everything was on pause and yet happening at the same time, this collection of weeks when anything was possible.” – Sarah Dessen
“Summer is the annual permission slip to be lazy. To do nothing and have it count for something. To lie in the grass and count the stars. To sit on a branch and study the clouds.” – Regina Brett
“The sunshine was like powdered gold over the grassy hillside.” – Maud Hart Lovelace
“Live in the sunshine. Swim in the sea. Drink in the wild air.” – Ralph Waldo Emerson
“Summer has a flavor like no other. Always fresh and simmered in sunshine.” – Oprah Winfrey
“In the summertime, when the weather is hot, you can reach right up and touch the sky.” – Mungo Jerry
“The summer night is like a perfection of thought.” – Wallace Stevens
“It’s summer and time for wandering…” – Kellie Elmore
“August rain: the best of the summer gone, and the new fall not yet born. The odd uneven time.” – Sylvia Plath
“The sun tires of summer and sighs itself into autumn.” – Terri Guillemets
“One must maintain a little bit of summer, even in the middle of winter.” – Henry David Thoreau
Summer was always a conflicting time for me. When I was in school, I mourned the end of comfortable routines and the parts of school that I liked but looked forward to the freedom of the holiday. It was the same during sixth form and university. This year is one of the first summers I’ve had without of educations on either side of it so it’s a bit weird; I’m in uncharted waters to a certain degree. And the COVID numbers are still far too high for my anxiety to relent around all of the possible socialising that summer traditionally involves.
Do you have any quotes that you associate with summer? Or if not quotes, what about poems or songs?
Posted on May 29, 2022
I’d hoped to write and post more for Borderline Personality Awareness Month but between my depression and changing medications, I’ve been struggling to write; I’ve started a handful of posts but been unable to finish them. But, of the symptoms of BPD, my fears around abandonment have been particularly oppressive recently and so I’ve been thinking about that a lot. I thought I’d write done some of my thoughts; it’s the best I can do right now.
Fear of abandonment is a significant aspect of Borderline Personality Disorder and it’s something that I’ve personally struggled with for most of my life. I was diagnosed with BPD when I was twenty and the consensus was – and still is – that it was due to the difficult and frustrating process of being diagnosed with Autism Spectrum Disorder, where I was repeatedly ignored and invalidated by medical professionals when I expressed how much I was struggling. I guess those could be interpreted as abandonments. But I’d been abandoned in the more traditional sense multiple times before that, so the ‘foundation’ – I guess you could call it – for a fear of abandonment was already there (I’m not sure if it works like that but I noticed the pattern as I thought back): most of my friends stopped hanging out with me when I was eleven and then my one remaining friend moved abroad about a year later so I started secondary school with basically no friends; my Dad died suddenly when I was thirteen; and then, when I was nineteen, a very important figure in my life just cut me off without warning. Each one reinforced the fear and the fear just kept building exponentially. So I think it’s fair to say that I was well on my way to developing a complex about being abandoned by the time I was diagnosed with BPD.
It didn’t stop there – and there were a couple of painful ones – but, on the whole, life has been relatively stable until recently. Over the last few months though, I’ve been dealing with a lot of feelings of abandonment. Some of the actions that have caused these feelings were intentional, some not; some of these feelings are based in reality and some are based on anxiety. People who’d been consistent in my life for a long time left suddenly for work or family stuff, people not being who I thought they were, people drifting away… I don’t want to write about them specifically because the point of this is not to ‘name and shame’ – it’s just felt like one after another after another lately and it’s been really tough. And, again, I’m not trying to say that these people are deliberately, intentionally abandoning me; BPD has just made me particularly sensitive to situations that could be perceived as abandonments, especially when they seem to be happening a lot. Sometimes it’s on me for overthinking or overreacting, sometimes it’s on them for doing or not doing something, and sometimes nobody did anything but it still feels awful. We’re all human beings just doing our best (most of the time, at least). I guess the point I’m making here is that it’s a feature of BPD that I have to live with and have to navigate on a daily basis and this is a part of that.
I don’t think it’s a great leap to assume there’s a link to low self esteem. I find it hard to see why other people would want to be friends with me, which has only been exacerbated by all of my health problems: I feel like a burden (something I wrote about in this year’s MHAW post).
I remember seeing this on Instagram and relating to it to a painful degree…
Now I don’t even feel capable of being useful.
I feel like I’m always the one who can’t keep up, the one letting people down. I feel like, between me and my problems, I’m just too much for most people. Both too much and not enough at the same. And I can’t help but feel that if someone doesn’t think that yet, then it’s just a matter of time until they realise it. I know that these are my thoughts and not necessarily what other people think but it’s a hard thought pattern to shift; it’s pretty deeply ingrained at this point. It’s something I need to work on in therapy but I haven’t had access to therapy recently. Hopefully soon, although there’s a lot that’s happened over the last year that I need to work though.
I don’t know what I think about this post. I find writing about anything BPD related very difficult. It always feels much more personal and revealing to write about, compared to writing about Autism, for example. I’m not sure why. Maybe it’s because a lot of the symptoms of BPD correspond with issues that we’re conditioned to feel shame for and around: fear of abandonment can be portrayed as ‘clingy’ or ‘manipulative’; an unstable sense of self sounds scary to a casual ear; self-destructive behaviour can be interpreted as not wanting to be helped; and so on and so forth. Plus there’s a lot of stigma around BPD, even amongst the people who should really know better.
To learn more about BPD, you can find good information here and here, and here is a post I wrote about my experience with BPD in 2019. I hope this has been helpful or thought-provoking or something along those lines. I do want to write more about BPD because there needs to be more understanding around it as a disorder; it was just unfortunate that BPD Awareness Month – when I had planned to write a handful of posts about it – coincided with a period where writing felt really difficult. Combine that with a topic that I find hard to write about anyway and I’m kind of surprised that I even managed this, given how I’ve been feeling recently.
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.