Posted on September 12, 2021
And that’s that. I’ve finished the final module of my Masters and therefore the Masters itself. I don’t know what my grade is for the module or for the whole course yet but frankly, I’ve got a lot to process before I can even really think about the grades and graduation.
Looking back at a similar post before the module started, I was excited about the project but nervous about my health, mental and physical, and whether it would prevent me from doing everything I needed to do, from being able to enjoy the process. And those were valid concerns so I thought, having written a post about how I was feeling before the module started, I’d write another now that it’s ended – like bookends.
A lot has happened since the beginning of May.
Over the last four months, I’ve spent almost every day working on my final project, researching, writing songs, and working on the production of an album. It’s been incredibly intense and now that it’s all done, I’m utterly exhausted, both mind and body. And while, for the most part, I loved it, it’s also a relief to be free of some of the anxiety around it (I’m still struggling with my anxiety around the grade). Having said that, I feel strangely lost and untethered now that I don’t have this big thing to focus on. I know that I need a break but I am looking forward to the next project, whatever that may be. I’m always happier when I’m doing things.
My mental health was pretty good for most of the module, surprisingly so. By my standards at least. I think that the constant creating and the creating of stuff I’m proud of really helped. I had one particularly bad episode of depression, plus a handful of smaller ones, and my anxiety was pretty constant but that’s normal for me. It got very bad in the last month, which was hard to manage – trying not to let it destabilise me was a bit of a battle in itself. It hasn’t quite faded yet. For various reasons, I didn’t have any access to my therapist, which was an unforeseen difficulty and that made things a lot harder than I’d expected them to be.
I also really struggled with my concentration. I’m still not getting any support for my ADHD (something that I hope will change soon but I’m still so frustrated that I couldn’t get any help with it during my Masters) so staying focussed on my project, on my research, took all of my energy. It was exhausting. I felt like my concentration was so, so fragile that a single moment of distraction would break it and then it would be impossible or would take days or even weeks to get back. So I couldn’t stop. Not for anything. That was very stressful and resulted in many, many long days. Sometimes I’d work all day without moving (not healthy, I know) and end up going to bed very late. And then, of course, I couldn’t sleep because my thoughts were racing. So it did a number on my sleep schedule too; I’m surprised I’m not nocturnal at this point.
That, plus the general fatigue I deal with day to day, meant I was tired all of the time. I’ve drunk an obscene amount of Red Bull (my antidepressants make me really drowsy, just to make things even more difficult, although I may be changing medications soon, which hopefully won’t have the same side effects) – I am beyond sick of the taste of it. But it got me through and I’m grateful for that. I will however be grateful to never drink it again (hopefully). And I’m really looking forward to getting both some proper sleep and some proper rest now that my work is done.
I also mentioned back in June that I’d been having migraines that seemed to be being caused by an abscess in one of my teeth. Since then, I’ve been on antibiotics twice, continued to have migraines, and am still waiting to have the tooth removed, a decision that was made at the appointment in June. Given how much disruption it was causing though, I did get extenuating circumstances which allowed me some extra time (although it wasn’t really extra since it was making up for time lost to a medical problem) to cope with those problems. It’s not bothering me presently which is a relief but I’m more than ready for them to take the tooth out, just so that they’re not even problems I have to think about.
While I managed to keep swimming twice a week – a routine I’ve been trying to maintain to create a solid foundation for my crappy joints – I was in almost constant pain throughout the module. At times, my right knee was so painful that I couldn’t walk on it and my back has been consistently painful; my Mum, who used to be a massage therapist, said it felt like trying to massage rocks and now that it’s all over and I’m trying to relax, the muscles feel like their made of concrete. Which is about as pleasant as it sounds. I’ve also had great trouble with my hands and wrists what with all the typing I’ve been doing. So, all in all, I’ve been a bit of a mess. I haven’t had any support for this – the hEDS – either; I’ve been waiting for physiotherapy and hydrotherapy since December 2020 officially and May 2020 unofficially. I’ve just had to try and get by on various painkillers, none of which have been all that effective.
Despite working practically non-stop, I got everything for my project done just in time for my final presentation. My assessors were positive, which I’m trying to hold on to in the wake of my anxiety around the final grade. I’ve been really trying not to attach my self worth to my grades (something I’ve always really struggled with), or at least, lessen the power my grades have over me but I can’t help the fact that I really want to do well. I’ve worked so hard – with so many obstacles – and the idea that that still wasn’t enough to get a Distinction would be upsetting. I’d get over it but it would still be upsetting. I never want someone thinking, “Oh, she mustn’t have worked hard enough.” Or worse: I never want to think, “Oh, I would’ve gotten a distinction if I wasn’t autistic or had ADHD or whatever” thoughts left over from my late diagnoses and the resulting difficulty I have in setting standards and goals for myself (more on that in another post). This anxiety isn’t helped by the fact that I keep thinking of things that I should’ve included in my presentation. My brain clearly hasn’t quite processed that the module is over.
And then, just when I thought I could relax, the world tipped under my feet. The next morning, my Mum told me that my Granny had died a few days earlier. She was ninety-three. Having barely started to process the end of my two year Masters and intense final project, this news was just too much for my brain. A few days on, I feel like I’m bouncing pretty erratically between two states, the first being this weird bubble where nothing can touch me and the second being, ‘if I stop thinking or talking or moving for even a second, I’m going to completely fall apart.’ It’s surreal and exhausting and sad. I’d like to write a piece about her at some point because she was such an incredible woman but I can’t really write more than this right now but it felt really important to at least acknowledge what’s happened because it’s so big and so important.
I don’t think there’s anything else to say right now. I’ve barely been able to wrap my head around this last week: my final presentation, the ending of the Masters, Granny, and everything that’s ahead given all of these things. It’s a lot to take in; I’m exhausted. I’m just taking it day by day.
Category: adhd, anxiety, autism, covid-19 pandemic, death, depression, emotions, family, heds, medication, mental health, music, research, sleep, therapy, university, writing Tagged: actuallyadhd, actuallyautistic, adhd, adhd inattentive type, adhd support, album, antibiotics, antidepressants, anxiety, anxiety disorder, asd, attention deficit hyperactivity disorder, autism, autism spectrum disorder, autistic, autistic adult, autistic student, break, concentration, death, depressed, depression, drowsiness, drowsy, eds, ehlers danlos syndrome, exhaustion, extenuating circumstances, fatigue, final project, focus, generalised anxiety disorder, grades, grandmother, grandparent, granny, grief, heds, hypermobile ehlers danlos syndrome, hypermobility, identity, inattentive type, late diagnosis, loss, masters, masters degree, masters degree in songwriting, masters degree year two, masters part time, medication, mental health, mental health break, mental health update, mental illness, migraine, migraines, new album, new music, part time masters student, processing, recovery time, red bull, rest, self worth, side effects, singer, singersongwriter, singersongwriter life, sleep, sleepiness, sleepy, songwriter, songwriting, therapist, therapy, tired, tooth extraction, tooth pain, writing
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 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, 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…