Posted on May 9, 2021
Trigger Warning: This post contains mentions of self harm, but it’s simply a statement that it happened and there are no descriptions, graphic or otherwise. If this could upset or trigger you, please don’t read any further. Please always put your mental health and emotional state first.
So we’ve reached the last semester of the Master’s, with the big, final project that we’ve ultimately been working towards throughout this whole course. It’s a big deal, exciting and scary because – obviously – I want to do well and create a project that I’m proud of. But I am worried about my health, mental and physical, getting in the way and making it a difficult to both work hard and enjoy the process. So I thought, with all of this in mind, I’d write down where my head’s at and how I’m doing – I guess, so that I have a record of how I’m feeling right now, at the very beginning of the project.
At the moment, my biggest difficulties seem to be chronic fatigue and pain that are a result of my recently diagnosed Hypermobile Ehlers-Danlos Syndrome. I’m tired and sleepy all the time; some days, I can barely keep my eyes open during the day. While the physical tiredness is likely due to the hEDS, at least in part, we suspect the sleepiness is due to my antidepressant, Phenelzine. I want to switch to something else as soon as I can but mid-Master’s is not exactly a great time, given how long it generally takes for antidepressants to take effect and my track record of reacting badly to all but Phenelzine (so far, at least). So I’m having to just put up with that, with the dwindling help of Red Bull.
The pain has been really bad, particularly in my legs, arms, and back. For months, I’ve been taking painkillers daily but I feel like, over the last few weeks or so, it’s started to get slightly better. I’ve been doing the Occupational Therapy exercises for my wrists and hands and I’ve been able to start swimming again (yay!), both of which do cause pain of their own but it’s a very different pain and actually wears off pretty quickly while the hEDS pain tends to just get worse and worse unless I take painkillers. I’m getting better at figuring out where my limits are and stopping before I overdo it – most of the time. It’s hard but I do feel like I’m seeing progress.
My depression has been okay recently, much less of a problem than it has been in the past (she says while still on the ‘end’ of one, but I’ll get to that in a minute). I had one awful episode at the beginning of April, which did result in self harming. And then I had another episode last week, which I’m still feeling even if I’m not drowning in it anymore (it was kind of forced to the back burner by the worst migraine I’ve ever had). Both episodes were triggered by really upsetting news; they didn’t come out of nowhere like they sometimes do.
My anxiety has been a lot to deal with, but then there have been a lot of things to be anxious about: keeping up during the semester, the assessment and doing well in the module, all things COVID related (I’ve developed this weird house-separation-anxiety-like-thing whenever I’m out of the house too long, which is horrible), all of my health stuff, preparing for the new module and final project, trying to balance everything in my life, and so on. It’s exhausting and has a knock on effect; the rest of my mental health issues are all affected by my anxiety.
The two areas that are most tightly linked with my anxiety, I think, are my Trichotillomania and my OCD. My Trich hasn’t been too bad of late – not great but not unmanageable. But my OCD has been much more of a struggle lately than it sometimes is. I wrote about it in general here (so if you need a refresher on what my OCD is like, this is probably a useful read) but with everything going on recently, it seems to have kicked up a gear. I just can’t seem to do everything and then write all of it down; there aren’t enough hours in the day, which just leads me to getting more and more behind with everything, which just makes it worse and worse. Again, it’s just exhausting. I feel suffocated by it but I don’t know what to do about it; it feels like the walls are closing in around me and there’s nothing I can do to stop them.
As for autistic meltdowns, I haven’t had many of late. I think that’s because, despite my anxiety, I’ve had a really good few months. As I said in my previous post, this last university module and all the writing that came part and parcel with it was really good for me and I felt really good in myself so, in general, things didn’t build up to the point of meltdown. There were a number of occasions where something took me by surprise (for example, an unexpectedly triggering advert – I hadn’t even known that it was something that would trigger me so that was unfortunate for everyone) and I had a meltdown but as things go, it’s been better than it has been.
I’m not entirely sure how my ADHD manifests yet, having only received the diagnosis recently. If only it were as simple as getting the diagnosis and everything making sense… So I still have work to do in that regard. But I’m fairly certain – as certain as I can be at this point – that my issues concentrating and the feeling of my brain working against me are part of this picture. For the moment though, I’m in the dark about all of this. I’m in an impossible position medication-wise (I’m going to write about this in more detail at some point – it’s just that I’m still processing it all) so I’m stuck and unsure how to manage these problems. It’s frustrating and tiring and I wish there was an easy answer. Or even an easier one than I’m currently faced with. But there doesn’t seem to be. So I’m not sure where to go from here.
And the newest problem – because I really needed more problems… – are these migraines that I’ve been having over the last month. In the past, I’d have a migraine every few months or so but recently they’ve been different. They’ve been completely debilitating, painful to the point that I’ve ended up in A&E and had to have an ambulance called to the house because they’ve been so bad. They’ve also gone on for days when previously I could sleep them off and they’d be gone in twenty four hours. I’ve yet to find pain relief that does a decent job and I find that very scary. Calling 111 and them sending an ambulance because I was in so much pain but so light sensitive that even a darkened room felt too bright is a big deal and I’m scared of what’s next, of how it could get worse. I don’t know what’s causing them and no one else seems to either.
And finally… I’ve been the most consistent with therapy I’ve been since the pandemic began, even if I still find it hard and less productive when doing it over Zoom. But it’s looking like we’ll be back to face-to-face soon, which is exciting if scary – as I said, I’m finding it quite stressful to be out of my house. But hopefully, therapy will go back to being as helpful as it was pre-COVID, when it was face-to-face all the time. I don’t know exactly why it doesn’t feel the same over Zoom – maybe I find it harder to connect and talk about the hard stuff when I’m not in the same room as my therapist – but it just doesn’t, so I’m looking forward to getting back to the room.
So that’s it, I guess. This is my mental health (and I suppose, physical health update) before I start the final module of my Master’s, The Major Repertoire Project. Everything feels very messy and complicated right now, which isn’t exactly reassuring. I want to do well in the module, of course, but I also want to really enjoy it and really get the best out of it. The module doesn’t officially start until tomorrow but I’ve already started working on my project. I’m so excited. I just hope I can manage it with all of this other stuff going on.
Category: about me, adhd, anxiety, autism, covid-19 pandemic, depression, diagnosis, heds, medication, meltdowns, mental health, music, ocd, self harm, therapy, treatment, trichotillomania, university Tagged: adhd, adhd diagnosis, anxiety, attention deficit hyperactivity disorder, autism, autism spectrum disorder, autistic, autistic adult, autistic meltdown, chronic fatigue, chronic pain, coronavirus, covid-19, depression, diagnosis, drowsiness, ehlers danlos syndrome, fatigue, generalised anxiety disorder, heds, hypermobile ehlers danlos syndrome, hypermobility, major repertoire project, masters degree, masters degree in songwriting, masters degree year two, masters part time, medication, meltdown, mental health, mental health update, migraine, obsessive compulsive disorder, occupational therapy, ocd, online therapy, pain relief, pandemic, pandemic 2020, pandemic anxiety, self harm, sleepiness, swimming, therapy, trichotillomania, trigger, trigger warning, tw, university
Posted on April 24, 2021
So, on the 4th January, England went into another national lockdown and this list was once again revived. This one felt much more like the first lockdown than the second, where many schools, businesses, etc were still open. When schools and universities started to open, my course remained online (it was one of the courses that could function solely online and meant less people going back to the uni) so lockdown continued for me. My life has only just started to involve going out again – swimming, getting a haircut, (safely) seeing a few people – and that’s why I’ve kept this list going as long as I have…
As I said in the last part of this list, hopefully there won’t be reason to continue this post; hopefully there won’t be any more lockdowns. But I guess only time will tell. I’ve found it strangely comforting to keep this list; it’s kind of like a time capsule for these strange periods of time, if that makes sense.
I hope you’re all keeping safe and well and I’ll see you in the next post.
Category: adhd, autism, covid-19 pandemic, death, diagnosis, heds, medication, meltdowns, mental health, music, tips, trichotillomania, university, video, writing Tagged: a&e, about-face, absentia, acoustic ep, acoustic sessions, adhd, adhd diagnosis, adhd medication, ancestry, ancestrydna, attention deficit hyperactivity disorder, ava, betsy lane, birthday, blood & water, cat family, christmas present, chronic fatigue service, chyler leigh, collaboration, coronavirus, covid test, covid vaccination, covid vaccine, covid-19, cowriter, cowriting, cowriting session, creating the queen's gambit, criminal minds, dare me, dbt, dialectical behaviour therapy, ecg, escape from pretoria, evermore, family history, fawm, fawm 2021, fearless (taylor's version), february album writing month, film, films, folklore, friends, grammys 2021, grey's anatomy, grief, grief anniversary, haircut, halsey, heds, honest ep, honest ep (sunburst sessions), hospital, how it ends, how to train your dragon, hypermobile ehlers danlos syndrome, hypermobility, inattentive type, interview, kalie shorr, lexie grey, lockdown, lockdown 2021, lockdown 3.0, luce, masters, masters degree, masters degree in songwriting, masters degree year two, masters part time, medical trauma, medication, meltdown, migraine, movies, my cat, my cats, my dog, natalie hemby, new amsterdam, new music, new music release, new music uk, new single, nicola walker, occupational therapy, online concert, part time masters student, peppermint, politics, put it in a postcard, remote writing session, research conference, rheumatologist, rheumatology follow up, richard marc, social distancing, songwriter, songwriting, songwriting competition, sunburst sessions, taking lives, taylor swift, the bay, the dig, the one, the one netflix, the queen's gambit, the shires, the wilds, therapy, tim minchin, tiny pretty things, travis meadows, trich, trichotillomania, triggered, tv show, unforgotten, university, us politics, world autism awareness week, world autism awareness week 2021
Posted on March 21, 2021
A couple of months ago, I was diagnosed with ADHD. It was something I’d been thinking about investigating for a while but with COVID and the lockdowns, it was just something that got pushed to the back on my mind; I was busy trying to deal with my anxiety and depression. But then the opportunity to have an assessment came up unexpectedly and I decided to take it.
At the end of my hypermobility assessment, we were really just making conversation and the appointment was drawing to a close when I mentioned something offhandedly (I can’t even remember what now) and the specialist commented that she had worked with multiple individuals with ADHD who had similar experiences. I decided to bite the bullet and so I told her that I had done some research into the combination of ASD and ADHD and that I’d been thinking about whether I should be assessed. She said she could arrange that for me, which was more than a bit shocking: I’m so used to having to fight like hell for people to give me that sort of opportunity. So I took it gratefully and to my complete and utter surprise, I received a letter later that week with an appointment date in less than a month. I was expecting months of waiting. And it was also with the same specialist so that was reassuring since consistency is helpful for me, as someone with ASD.
In the time before the assessment, I was sent a handful of questionnaires used when diagnosing ADHD, which I filled out, but it was clear that they were old: aimed at children and the stereotypical presentation (they were old: I searched them and when they’d been created). But I filled them in anyway and we sent them back in preparation for the assessment.
I also did a load of research into ADHD in adult women (more extensive than I’d previously done). I collected articles, personal essays, blog posts, and anecdotes from social media that I related to or felt were relevant to my life, and compiled them into a document. It was a LONG document. That done, we emailed it to her, although it was so close to the assessment that I wasn’t sure whether she’d have time to read it before she saw me. I still thought it was worth sending and when we spoke, she did too.
When the assessment rolled around, I was nervous. I’ve had enough bad experiences at this point to at least be apprehensive before these things. But already knowing the specialist was helpful and she was really good. She hadn’t had a chance to read the document I’d sent but promised she would before making any decisions about a diagnosis. Then she spent about an hour asking me and my Mum (who was also present for emotional support and information about my childhood) lots of questions, the majority of them about my childhood, my experiences at school, and typical ADHD symptoms. Some of the questions were quite stereotypical but having said that, she was incredibly knowledgable and very aware of the fact that there are different presentations of ADHD, as well as how different everything can be when you have ASD in the mix as well. So even though she obviously had to ask the conventional questions, she did tailor her approach to fit my circumstances, which, of course, gave her a much more accurate picture of what I was dealing with and how I’ve been struggling.
After an hour – at the mid point of the assessment – she suggested we take a break: to move, have a drink, etc. But as soon as I tried to move, I got the blinding, electric shock like pain in my leg that I’ve been getting on and off since the first lockdown. It’s excruciating and nothing helps it; I just have to try to remember to breathe and wait until it fades. This can take from a few minutes to almost an hour and I’m always exhausted after so when the break ended and the specialist rejoined the online call, Mum told her what was happening (she was already aware that it was something I was having to manage since it had come up in the hypermobility assessment) and between them, they rescheduled the second hour of the assessment for a later date. I doubt I could have kept going but it was frustrating to slam the breaks on halfway through a process like that and then have to wait almost two months to continue. Having begun, I just wanted to get on with it and get an answer, one way or the other.
But when the second appointment finally rolled around, I wasn’t sure whether I was relieved or nervous. But again, the specialist was great. She’d read all of my research and she asked me a few more questions based on certain things I’d included or commented on. Then she moved on to her observations and her conclusions, based on the original questionnaires, the questions she’d asked me, and my research. She said that, because of the overlap between ASD and ADHD, it can be very tricky to determine which symptoms ‘belong’ to which condition but having said that, she felt that I did display enough symptoms and the impairment caused by those symptoms to diagnose me with ADHD Inattentive Type. And that’s that. Except, of course, it isn’t. But it is an explanation and it does point in the direction of potential help and support.
Initially it was pretty overwhelming; for some reason I found it really hard to process. I had to just sit with it for a bit – let the dust settle – and then, after a while, it just felt less intense. I could think about it without feeling overwhelmed by it. But, even though I had been wondering about it before the assessment, it’s still very new and I’m still learning about what this means for me and how I move forward.
So now I’m investigating various options in terms of support. Apparently group therapy is a commonly used method of supporting individuals with ADHD but, of course, that’s not possible at this moment in time. The specialist told me that the NHS are currently building an online hub of resources but, as far as I know, that’s not been published yet. I’m fortunate to already have a very good therapist so I feel well supported there.
That just leaves medication. Unfortunately, I can’t take the classic ADHD medications with my current antidepressant because they both potentially cause high blood pressure, which could be dangerous. There are other ADHD medications that I could take but they all appear likely to have a sedating effect, and with the sedation I already struggle with due to the Phenelzine, that just feels unbearable. I can barely get through the day without two Red Bulls and caffeine pills. I can’t imagine what it would be like if I was even more sleepy; I’m not even sure if I’d be functional. So that’s not really an option. I’ve been doing some research, talking to the various medical professionals involved, and thinking about it a lot. I’m still not sure what’s going to happen next but I’ll work it out. I just need to be patient and keep looking through the kaleidoscope; I have to believe that, at some point, the bigger picture will become clear.
Category: about me, anxiety, autism, covid-19 pandemic, depression, diagnosis, emotions, identity, medication, mental health, treatment Tagged: adhd, adhd diagnosis, adhd support, asd, attention deficit hyperactivity disorder, autism, autism spectrum disorder, autismadhd, autistic, autistic adult, diagnosis, diagnostic process, inattentive type, mental health treatment, treatment
Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder (ASD), ADHD (Inattentive Type), and Hypermobile Ehlers-Danlos Syndrome (hEDS), as well as several mental health issues.
I’m a singer-songwriter (it’s my biggest special interest and I have both a BA and MA in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is on all platforms, with all proceeds going to Young Minds.
My debut EP, Honest, is available on all platforms, with a limited physical run at Resident Music in Brighton.
I’m currently working on an album about my experiences as an autistic woman.