Posted on June 12, 2021
It’s been a while since I last talked about my ADHD so I thought it was time for a little update. A lot has happened since I was diagnosed, some of which I thought might be worth sharing…
It was a lot to process that I did my BA and have been doing my MA with undiagnosed and unmanaged ADHD but the diagnosis had me looking back over the last few years and a lot of things started to make sense: why I’d excelled in certain areas and struggled desperately in others. Part of me was impressed with how I’d done, factoring in this new obstacle that I’d been unknowingly battling against, but on the other hand, it makes me sad that I’ve had to, you know? It makes me sad that I’ve had to work against my own mind all this time without anyone noticing or supporting me – in this sense, at least. Life could’ve been so much easier.
And now I have to finish my Masters unmedicated.
Because I take Phenelzine for my depression, there’s the risk of interactions with stimulant-based ADHD medication so I can’t take those; both medications have the potential to raise a person’s blood pressure and together, that could be very dangerous. However, given the extreme drowsiness I experience as a side effect of the Phenelzine, I can’t take a non-stimulant medication either due to the high chance that they’ll add to the drowsiness. It’s hard enough staying awake and (somewhat) focussed during the day. I can’t afford to make it worse, especially in this final module of my Masters, the one I’ve been looking forward to since I started the Masters. So it looked like a dead end. But I wasn’t giving up at the first hurdle so I did what I always do: I started researching.
After a bit of searching, I found a research paper about a series of studies done, combining medications when traditional routes failed to work. One of those cases detailed a man who only responded to an MAOI (which is what Phenelzine is) and a stimulant-based ADHD medication. He had to continuously monitor his blood pressure but had no problems and continued on the two medications indefinitely, which allowed him to live a normal, productive life. That seemed very promising, as a starting point for discussion at the very least, so I sent it to both my psychiatrist (who’s been managing my medication for years now) and the ADHD specialist.
My psychiatrist was willing to try, provided I was diligent about checking my blood pressure. Despite our initial ups and downs, we have a really good relationship – and we have had for a long time now – and he always takes my thoughts, opinions, and research into consideration, which I really appreciate even if he ultimately opts for a different approach. So that felt good, like a step in what felt like a positive direction.
We didn’t get a response from the ADHD specialist for weeks. To begin with it was just frustrating but as time went on, I started to swing between despair and anger. I felt like I’d just been abandoned, dropped without a word (something that’s unfortunately happened enough times that it’s become a big trigger for anxiety attacks, episodes of depression, and even autistic meltdowns, depending on the situation); sometimes it feels so upsetting that these medical professionals can just go home at the end of the day and leave all of the struggles of their patients/clients behind while we all have to keep living (and suffering) from them. I know it’s not that simple – that they don’t just stop caring, that they can’t and shouldn’t have to work ridiculous hours – but in my desperate moments, in situations like this, it feels hard to feel supported, to believe that they do care, that you’re not just another file rather than a person struggling through each hour.
After some extra complications due to communication problems, we finally heard back and she was saying a categorical no, having had previous patients respond badly to the combination. While I can understand that, I found it frustrating that she wasn’t even open to trying it. I’ve always responded unusually to medications (proven again and again by my experiences with more than fifteen medications/combinations for my depression – the only one that’s worked is one that’s rarely used) so I was frustrated by the brick wall approach she was taking. My psychiatrist was still open to trying and said he’d talked to her about transferring the medication aspect of managing my ADHD to him since he’s been treating me for so long and has a detailed understanding of my history. But she said no.
So that’s it as far as I can tell. Unless I change my antidepressant, (I have to point out again) the only one that’s helped me, I can’t take medication for my ADHD. It’s essentially come down to choosing which of the conditions to treat, my depression or my ADHD, which just makes me feel so upset and frustrated. Treating my ADHD could make a huge difference in finishing my Masters but I’m getting blocked at every turn. It’s almost worst now than before I knew about the ADHD. Before, I was struggling; now, I’m struggling and I know why but I can’t do anything about it. The whole situation makes me so angry, so angry that I couldn’t do the most recent online appointment. I wasn’t in the right headspace and I doubted my ability to be receptive when my emotions were so all over the place.
My Mum took the meeting but it hasn’t changed anything. I’m still not getting any treatment, any support. I feel like I’ve been given this great weight to carry but abandoned to carry it without help or advice. I don’t know what to do. I don’t know how to move forward. I feel like I’ve been let down by someone who’s job it was to help me. Again. It’s upsetting and exhausting and stressful.
I don’t say these things to encourage a mistrust of doctors or because I regret the ADHD diagnosis. I just need to be honest – for the sake of my own mental health – and while I generally try to see the positive, sometimes the situation just sucks. It’s just bad and hard and makes a mess of you.
Category: adhd, anxiety, autism, depression, diagnosis, medication, mental health, music, research, treatment, university Tagged: adhd medication, adhd support, anti-depressant, antidepressants, anxiety, attention deficit hyperactivity disorder, depression, inattentive type, masters degree, medication, mental illness, neurodivergent, neurodiverse, neurodiversity, phenelzine, stress, stressful, treatment, university
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
Hi! I’m Lauren Alex Hooper. Welcome to my little blog! I write about living with Autism Spectrum Disorder, as well as several mental health issues. I’m a singersongwriter (and currently studying for a Masters in songwriting) so I’ll probably write a bit about that too.
My first single, ‘Invisible,’ is now available on iTunes and Spotify, with all proceeds going to Young Minds.
I’m currently releasing my first EP, Honest, track by track and all five songs are now available on all major music platforms. However, there’s still more content to come…