bikes and things

Not sure I was ever a huge fan of Richard Ashcroft but how the hell do you title something like this? This is as interesting a title as I could manage today. 

This is a follow up to this previous post where I described receiving an ADHD diagnosis relatively late in life. That post seemed to somehow have resonated with various people and made its way to the front page of Digg.com for a few days. The stats showed 9,000 unique impressions on it and then about half that the day after. That’s quite a lot for my small little blog where I post random thoughts at times. I also had lots of messages on Twitter and Instagram as well as a few random people via Digg.com who wanted to simply thank me as it sounded like what they had been through or it had been a revelation to them and that they were now going to get an assessment. For that reason I think it was the right thing to do to be so open and honest about it all. I know of two people who’ve gone and got an assessment as a result. 

Some caveats before going further. This is my experience of ADHD, stimulant medication and its effects on me. Your experience may vary and you should seek advice and support from a professional. The only reason for this post is to normalise and inform around a topic that doesn’t appear to have much written about it. 

The end of the previous post wasn’t hugely positive as the diagnosis wasn’t quite the moment of clarity I had hoped for. Having spent a few days crying and shocked to my very core I then headed deep into a confused and depressed state for a few weeks. I can only describe it as a complete feeling of numbness, confusion and depression which I likened to being within a glass bubble at the time and looking out into the world whilst kind of banging around inside this glass sphere. It’s probably best described as trying to deal with the seven stages of grief. We’re a bit closer to acceptance now I’m pleased to say. 

The most painful part was going back and thinking of the various moments in my life where knowing about all this could have really helped me or others. What relationships might still be intact? What could have been and so on. I seem to have escaped that a bit and am finding and accepting that this just seems to be the right time and moment to find out all about this, to then deal with it, and move forward. And I’m getting to the point of no regrets (kind of).

One thing that helped me climb out of the bubble was my follow up appointment with the psychiatrist. This seemed to validate it all for me slightly and convince me I wasn’t making it all up or a fraud. So we have our call and discuss treatment options. There are a number of treatment options presented. Stimulant medication, other medication, therapy, CBT and finally ADHD coaching. Out of all of these I wanted to give medication a go as I knew that I wouldn’t stick with CBT or therapy. I have also gone back to a therapist I’ve seen before but largely to deal with the issues around this than the actual ADHD. Best to deal with it now rather than later I think. 

Having discussed that medication would be my preferred option we discussed a treatment plan based on a medication called Elvanse, or Vyvanse in the US, which is a trade name for Lisdexamfetamine, which I still can’t work out how to pronounce. Wikipedia gives us this rather neat definition. 

Lisdexamfetamine, sold under the brand name Vyvanse among others, is a medication that is a derivative of amphetamine, it is converted to dextroamphetamine by the body which is chemically related to MDMA and other drugs of the amphetamine class. It is mainly used to treat attention deficit hyperactivity disorder (ADHD) in people over the age of five as well as moderate-to-severe binge eating disorder in adults.

My main question was relating to the use of a stimulant to treat what I find to be a very active and restless brain. Surely this was just going to send me completely crazy? It was explained to me that this wasn’t the case and that it was simply going to help two parts of the brain talk to each other in my brain that are connected in neurotypical people. My other question related to any loss of character. I know that some medication used for depression or other issues can cause a bit of a fog or dampening down of oneself. I was assured that this wasn’t going to happen. Ok. Fine, let’s give it a go then. We talk about a base dose and then increasing steadily whilst reviewing and monitoring. We started at 20mg and I am now pretty stable on 60mg having gone up in increments over around 8 weeks. 

We discussed possible side effects and that I could no longer have alcohol or caffeine whilst taking these meds. Ok, that seemed slightly uncomfortable at first but more on that later. She said that most people have good results with this type but we would just have to see.

I decided that starting this would be best on a Sat so that if I did completely lose my mind it wouldn’t affect work. The night before I had a few drinks with friends and enough to probably give me a bit of a hangover – and also my last drinks for quite some time. The next morning I took my first meds with breakfast and about an hour or so later received the feeling of what I can only describe as clarity. Just pure clarity. No rumination. No negative spiralling or my mind running away being over active. How have you all existed like this in such a wonderful state of calm? It was quite a revelation. 

What came with this was a bit of a weird oversensitivity to anything I felt. Was that the meds? Am I talking all slurred. Am I being weird. And a weird hypersensitivity to feelings and mannerisms. This then developed later into questioning what was me, what was ADHD, what was medication along with some quite abstract thought as to the role of self in all of that. Something I’ve been exploring with a therapist and has got a lot easier since.

During the titration period there were a number of side effects and these have all come and largely gone. These have included; dry mouth, sore teeth, sore legs, increased anxiety, slight dizziness, loss of appetite, disrupted sleep, feeling a little off my face and weight loss… which all sounds quite bad. But most didn’t last more than a few days and were often around the point where I was going up a dose. I went 20 > 30 > 40 > 50 and ended up at 60mg where I’m staying. Two things have stayed actually and these are fairly easy to manage. The loss of appetite is fairly constant and I often have some very sweet WhatsApp reminders from my girlfriend to eat. I keep snack bars on me at all times to make sure I have something available and avoid an evening crash when the meds wear off. And I need to keep drinking loads of water! There’s been a bit of weight loss which is no bad thing but I also put that down to not drinking booze anymore. I also put some of the above symptoms down to giving up caffeine too. I seem to wake up quite early these days but now just embrace it and get on and get to work or go and do some exercise. I do feel really quite exhausted in the evenings when it wears off some days. Not such a bad thing as no working all night anymore. 

I thought giving up booze would be a nightmare. And the same for caffeine. But when on the medication I don’t have any real urge to drink at all! All I could think of was that this meant I was using alcohol and caffeine as stimulants to manage my ADHD. I’ve been having alcohol free beers and not really had an issue with them. I can still go out for a night out with friends or go for coffee with someone and then just have decaf, which again is completely fine. 

But then that brings us on to an interesting point. The oh “You’re not drinking” comment or the raised eyebrow in the regular coffee shop when asking for decaf. How do you explain this? What’s socially acceptable. Whilst thinking about this I realised I’d kind of been doing this for years and sometimes used the phrase “my brain works differently” in certain work settings where I didn’t quite get something or needed it explaining again. I’ve explained it a few ways but usually just say, “yeah, I can’t drink with some medication I’m taking”… and then sometimes explain a bit further. People are generally quite interested but I’m still not quite sure about it. It’s that thing of not wanting it to define you, yet wanting to be open and destigmatise it on so many levels. I often slip into the slightly jokey “I get to have MDMA for breakfast” or some variation of this, but it’s really not cool and I probably need to stop this as its somewhat reductive.

One other thing I read about was clouds of ADHD diagnosis. In that one person gets an assessment and then lots of others in the same social group end up with the same, as a result of people spending time with those who are most like them I guess. 

Overall I’ve been so much happier, positive and able to function better generally. It’s like a tailwind when cycling, it’s not doing all the work for you, but it does help you make progress in the right direction. Clearly there is more to life than being productive but it really has helped me fit in with the world at large and kind of just get on with life. So many things have now got done that I would have avoided previously not done. Now comes the task of sorting out some of the mess from before and trying to sort things for the future.

EDIT: True to form I focused on the content of this rather than the title. I’m actually 41 and 1/2. The URL slug is set now so will leave it but mildy amusing that this happened. Thanks to everyone who messaged me to say that this resonated with them in some way. It’s nice to know that I’m not alone. This has been updated with useful links at the end an another image.

Edit 2: 23.08.21 added more links and a useful Reddit thread to bottom of article.

This used to be a place where I would post things about riding or a video I liked somewhere and so on but now seems like a place where I come to record thoughts about mental health. I find the process of writing things down helpful, cathartic and often helps other people. Some people will probably think it’s all for attention and that’s fine, but the last thing I want is attention for this or for it to define me or really to talk about it that much in public (other than to help others). At the same time I’m not ashamed about this and if it helps one other person then it’s all worth it. Maybe I’ll find time to write up some rides again soon or some thoughts on the world but for now it’s back to another mental health post. This time we’re going to deal with my recent journey to an ADHD diagnosis.

So important caveats first. I’m not a psychologist or expert in this field. This is just my own lived experience and you should not take this as a guide to ADHD or how you might experience it. It’s simply a collection of thoughts and experiences that I have worked through and how I understand it as of date of writing. If you are exploring issues around ADHD this may be too much information and overwhelming for you.

Caveats out of the way… off we go.

I imagined that I might start this blog post with “…so I always knew I was a bit different” but that’s not the case. It’s simply not possible to know how other people experience the world and this is probably the biggest barrier I found to not quite dealing with this for the many years I’ve been on this earth. That and a lack of education about this field and a clear misunderstanding of what it actually is about stopped me getting anywhere near dealing with this until I was 42 and 1/2 years old.

This diagram is probably the most succinct explainer of what ADHD actually is as I understand it and how I relate to it.

I’ve previously had issues with depression and anxiety, general negative feelings, feeling like an imposter and so on. I’ve been to therapy a number of times to deal with this but not quite got to the root cause – through no fault of the therapist I should add. So how do you get to the point where you see a psychologist for an ADHD diagnosis? Well… I started with an online test after a friend noted of similar symptoms to me (but with a diagnosis). And then another. And then one more on a different website. But I thought I was gaming the system and that I was making it up. Maybe the websites were American and more likely to encourage a diagnosis. How could I possibly be this old and have ADHD? Nah. Not possible. Surely that was angry kids at school with difficult home lives? (I’m overstating that but it’s clear that it’s how this was what large sections of society thought about it when I was at school). I got 42 – 44 out of 48 on the test I refer to most often and I kept thinking that if I didn’t get a full house on it then it probably meant I was faking it.

I kept reading around the subject and what it meant. I looked at articles that referenced DSM 5 which any of this would be measured against. I made sure all google searches had “UK” appended to the search to try and make sure I was getting good advice. I still thought I was unlikely to get a positive diagnosis.

I finally plucked up the courage to book a test and went private. I got my test here with Psychiatry UK. I found the idea of trying to get a doctors appointment and referral almost impossible (and it is almost impossible) but also comes with a long waiting list. It’s possible to get a referral to a private consultant under the right to choose in the UK but more obstacles meant this was never going to happen. I bit the bullet and paid the money up front in June. I was pretty upset to see that my options for an appointment were in December onwards – quite a long way away and not quite the immediate feedback I’d hoped for. I stuck with it and filled out the forms. Again lots more self doubt here – many of the forms I didn’t feel like I hit them 100% and kept thinking of more faking it. If I wasn’t off the scale in all areas of the test they would just laugh me out of town.

The other part of the assessment is that someone else fills out some slightly shorter form about how they experience you, in this instance my GF. And holy shit that was hard to read. It did have the effect of making me ever so slightly more confident that maybe this was a thing. But then, what a nightmare I am. How did she live with me like this? How have I been this awful for so long.

One thing that did help was looking at ADHD meme accounts on Instagram which were alarming in the way in which I could relate to them. It kind of validated a lot of the behaviours and experiences I had. But then I was alarmed when not all described what I experienced.

And then I got an email saying my appointment had been re-allocated to early August back from December. I’m getting to the point soon I promise. This was a huge moment. Now just all the anxiety and worry to come from thinking about the appointment and what a diagnosis (or not) might mean. It was even worse when I mentioned it to a few people and then seemed slightly perplexed as to why I was doing it. “I wouldn’t have thought you were ADHD”… and shrugged. But then most people aren’t psychologists.

Appointment day comes and it’s via a remote call with an incredible person and psychologist. It’s fairly fast paced as you cover a LOT. It was meant to take just less than an hour but it lasted and hour and a half. It wasn’t until quite late in the session that it was confirmed that yes, I was ADHD, and no I had not been making it up. I’d been so nervous the whole call that we would get to the end of the call and she would thank me for my time but ultimately I was just lazy and smile at me and end the call. The last 15 mins were spent talking about treatment options – more on that in a bit. It covered everything from family, childhood, school, university, relationships, work, leisure, drugs, alcohol and so on. Pretty thorough and quite painful looking back at a few things really where I had come unstuck with this. A few examples are below. Kind of hilarious and sad to look back at this now and see it all make sense.

When I went to sixth form college I did a vocational course (GNVQ) and it was all coursework. All the modules were clearly defined in terms of outputs and you could take additional units to bulk out the course. Each piece of coursework I listed the bullet points out of the requirements and then just ticked them all off in the paper. I found it quite straightforward and I finished 3 months early and with a bunch of additional units done. I guess that wasn’t normal really. I was also quite socially awkward at the time and had very few friends or things to do in the evening so just did this instead. There were no other distractions.

When I did my degree I was top of my class, first class honours and had worked through Christmas at my shared house that year. Not because I was behind, but because I was hyper fixated on the work and just keep on at it. I would work from 8am until 1am most of the time just listening to music and working between a drawing board and computer. A completely all or nothing response. The boundaries were all super clear and a framework set for me to work and deliver against. I could work hard and deliver huge amounts of work and achieved incredible things within this framework. Then when I did my Diploma a few years later it was more open and less of a framework. I scraped a merit. There were also other distractions such as Internet cycling forums where I would be easily distracted as they were far more interesting. I found other ways to find stimulation and distraction away from work that someone else hadn’t set clear boundaries for me.

I was going through a bit of monotonous period at work around 2008 and 2009 and thought I’d get back into photography. Except I didn’t just do occasional photos. I took a photo every single day for an entire year becoming completely obsessive about it. Then I needed to know everything about photography. How to use off camera flash. How to do this that and the other. Then I started wanting to know everything about architectural photography and then turned it into a successful side business. Then I got bored of it as I felt I had completed it. I’d learnt everything I needed to. The fun was always in the obsessive learning and not necessarily repeating it once I had learnt it. I struggled to photograph buildings I didn’t like.

I used to read websites or forums and disappear down worm holes on the internet until 3am in the morning. Not the current addiction as designed YouTube type things but weird forums and news sites such as slashdot.org reading about obscure operating systems or delving deep into retro UNIX hardware from Sun, HP or DEC digital. Reading for four hours straight about programming languages and the latest MacOS release and its history and frameworks. Looking into all sorts of weird and wonderful hardware systems that never went very far. Apparently that’s not normal when you’re 25 and not a software engineer. And also not normal to do this at the desk next to your bed when your GF is in the bed next to you. I did the same with nuclear bunkers having grown up over one. Of course.

I drove someone to Scotland and back to a bike race in 2015 with someone I barely knew. It was around four days worth of driving there and back, plus another day and a bit for the actual race. I simply just said to him… “I can drive you if you like” and then figured out the consequences after. We’re now good friends, but still. Kind of not what a neurotypical person might do.

I get really really really offended by the most minor of things and then chew on them and continue to suffer from the pain and anger it causes me for weeks or months on end. The list of thrown away friendships and burned WhatsApp groups is extensive. I now know that this is likely to do with RSD – rejection sensitive dysphoria, quite common with ADHD. People just think I’m an arsehole, as do I.

I got into road cycling. Except I couldn’t just get into it I had to know everything about it and ride huge huge distances – 200km, 300km, 400km, 1200km… Kind of complete road cycling. Then I got bored of it and bought a different bike. I have now have nine bikes. I have poor impulse control and my finances are worse for it.

I can’t make a meal without eating half of it. Or making toast and eating it whilst my GF is plating up. Again, impulse control issues.

These are just a few of the many examples that came up in that appointment and that I’ve since been reflecting on since. It’s weird to see all of your traits and oddities laid out like that and how you’ve been fighting against it all for so long.

I’d pinned so much on getting a diagnosis that I saw it as some amazing moment of clarity that would hit me and my life would instantly become easier. That hasn’t happened, obviously. And it’s been hugely painful to reflect on life’s experiences and to think of what could have been. It’s left me feeling utterly bereft and isolated thinking about what could have been and how could I possibly have left it so long. It’s all so obvious in hindsight with the knowledge I have now. Why did I not help myself? Why did no one help me? Do I need to do some form of contact tracing and go back through my whole life and apologise and explain to people? It seems like it might ease some guilt or make things better.

It’s really hard to not look back and reflect on it. The one thing that is I guess some form of positive is that I’ve achieved a few things whilst all the time fighting this. Constantly battling against it. Maybe I could have achieved more. My only hope now that is by working with it, understanding it and managing it I can live a slightly less angst driven life and come to terms with it. It’s still really really fucking painful looking back though.

I start the next part of my treatment in a few weeks and may well update this once that hopefully starts to work. I’m going to try medication as a way of managing this as I know I just won’t engage with CBT type therapies and have already explored talking therapies at great length.

I guess that’s not quite the positive ending I’d hoped for. But I’m really quite glad I know and hopeful for how things can improve in the future. It’s going to take a while I think.

Here’s a few links to things I’ve found helpful.

What is neruodoversity and other conditions

ADHD 2.0: New Science and Essential Strategies for Thriving with Distraction–From Childhood Through Adulthood A good book on the subject. Naturally I got the audio version so I could actually get through it.

ADHD causes an inability to “feel” time. A really good Twitter thread.

Treatment for Adult ADHD The link between exercise and managing ADHD was really interesting for me in this one.

ADHD Meme therapy / adhdoers / adhdmemetherapy / livedexperiencecounsellor – A few Instagram accounts I found useful.

This post about the ‘spectrum of executive function‘ was also good. You colour in the areas where you struggle.

ADHD Designer A good Twitter account for those who are ADHD and designers.

Reddit thread on full process at psychiatry-UK. Super useful!

Russell Barkley explains ADHD – anything with Dr Russell is always good on this subject.

Will keep adding more as I find them.

Warning this post refers to mental health issues, self harm and suicide. Please do not read any further if this is difficult for you in any way.

This week has been pretty weird. I’m not quite sure why I’m writing this all down really. Maybe it’s to rationalise some thoughts, maybe it’s to make them leave my brain and onto a virtual page of sorts, maybe it is in the hope that someone else might find this and relate to it as they stumble around the internet. Maybe it’s to find some form of outlet that isn’t retweeting people supportive of this way of thinking to deal with my outrage at this week and the people who form and define the opinions in our media. That does fuck all. Will this do anything? Who knows, but it might make me feel better.

What happened this week? Well, a famous woman confessed to having suicidal thoughts on TV, a male TV host then said he didn’t believe her and has since doubled down on that, even after being sacked. Numerous folk have backed that person including such nice people as a famous football pundit usually known for his nice guy image. My timeline on Twitter is now full of discussion around suicide (in a round about way) and someone’s ability to say this out-loud and be recognised for it and have their thoughts accepted as being valid. This is extraordinarily difficult for anyone who has had the slightest dealings with either suicidal feelings or losing anyone to suicide in their lifetime.

I guess you could say I have been triggered.

My experience with this subject matter goes back to when I was a child, 15, and couldn’t cope with the world and the emotions it was generating in me. This resulted in self harm and a poor attempt on my own life. I played this down for many years until confronting in in therapy a few years ago and recognising and accepting that situation for what it was. It was real. It was serious. And it ended up with me at the GP with my very worried mother. I’m still embarrassed to go to the GP as this is on my record.

Two years later, when I was 17, my next door neighbour took his own life that Christmas. He was 26 I think. His room was the mirror image of mine in the terrace house we lived in and next door to my room. There’s details of that experience which haunt me to this day and won’t share. I still blame myself for not stopping him.

When I was at University in my second year of architecture school my housemate made an attempt on her own life and was hospitalised for a week. She survived. None of the rest of us quite knew how to deal with it or engage with the pain she felt. I think I was 20.

I’m now in my 40s and have struggled with my own mental health in recent years. Firstly in 2018 with some pretty dark thoughts – what I now know is referred to as suicidal ideation. I got myself back to therapy and seemed to have dealt with that for a while. And then again in 2019 it all got bad again. I wouldn’t use the tube when feeling like this for instance. The thing for me is when headspace / hot baths / exercise don’t shift it you know you really have a problem. I tried to ‘solve’ or do something about this and tried to find a walk in mental health clinic where I could seek professional help. I live pretty close to The Maudsley (a mental health hopsital) in South London and stupidly thought I would find an emergency clinic to walk into. As I left the house to try and find it Google Maps told me it had closed in 2017. I tried my GP and couldn’t get an appointment for weeks on end and gave up. Those thoughts come and go still. It’s like your brain is eating you from the inside. But ultimately I don’t think this gets fixed, it gets managed and you live with it perhaps.

This isn’t all about me either. I know of plenty of close friends who have dealt with many similar situations to the above. It hurts them and changes them.

One situation in the media that really affected me was the death of Caroline Flack. I’d not heard of her until her death. But the more I read about it and the more in which people so casually talked about it and even made jokes about it really deeply affected me. I left that WhatsApp group for good and struggled to relate to those people for a while.

I guess everyone’s lived experiences are different and you can’t possibly ask people to recognise how hard that is if you’ve never experienced it. But you can ask people to not be dismissive. I remember Ben Goldacre on Twitter remarking once “If you find me dead from suicide, it was the CIA”… or words to that effect. Again that shocked me, but more from a personal confidence level and his sheer arrogance and dismissiveness.

To say S word out-loud and admit to those feelings of ideation is extraordinarily hard regardless if you’re on TV or talking one to one with a loved one, GP or mental health professional. To have these feelings dismissed is the most shocking thing I’ve seen in a long time and is beyond contempt. It’s really really got to me.

It feels like we have made huge progress on the discussion of mental health recently but I feel this has set us back by years and years. I genuinely fear for what this has done to anyone who is struggling right now.

Again, I’m not sure what the point of writing this was or if there is any real conclusion to it all. I just needed to write something.