I’ve felt for a while that I might not be on the right meds. I’ve noticed slight improvements (more so on the short acting “top up”) but I don’t know if that’s enough. I’m still messy and disorganised at home, and doing stuff for my PhD is hard, more so than it’s meant to be (I think). I struggle with distractions at work, and the only thing that helps when it gets noisy is my expensive noise cancelling headphones. I’m waiting for some adaptations to be put in place, including software, but this will take time.
It’s difficult to know if my meds are the best fit or not. I don’t know what it’s like to have a neurotypical brain so what exactly am I comparing mine to? I’ve never been tidy or particularly organised at home. I think I’ve trained my brain to be more organised at work, so much so that mess and lateness annoy me. My concept of how long things take is pretty rubbish. I often get anxious when I’ve got to be out in an hour and there’s some dishes to wash and perhaps something else to do that likely won’t take long. That’s why I’m usually super early for work and other stuff. I just panic otherwise. I do sleep better on meds, whether or not I take my melatonin at night. My husband certainly notices when my meds wear off, he describes it like batteries running down but the opposite. I notice that I tend to lose my phone and other stuff when they wear off. The only reason I never lose my keys is that I’ve put them in the same place since I moved in- 20 years ago! So I guess my meds must do something, but is it enough? I just don’t know. I’m not expecting to be a super organised mutant and domestic goddess, just the best version of myself and not always feeling chaos in my brain. Oh, and not spending money impulsively would be good, especially as I have a new job starting soon, in an autism and ADHD service no less. But, no nights or weekends so less money and slightly less hours. Going off topic slightly here but that’s how my brain seems to work and I struggle to structure my writing quite a lot. Did I mention squirrels? Why is it always squirrels with ADHD? Anyone know?
Right, yes, I think I need to have my medications reviewed. I’d like to at least trial a different type of stimulant and see if I notice more of an improvement. I worry about side-effects as I don’t get too many with what I currently take. My appetite isn’t great early in the day, but I can manage this with snacking and could eat an entire village in the evening, once the meds have worn off. So I email my specialist’s secretary. I get a reply within ten minutes advising that the clinic has closed, and that the CCG has been sent all patient details to find an alternative provider and to ask my GP to contact the CCG if I need a review. So technically, nobody is in charge of my care as part of a shared care agreement. WTAF? This is causing me a lot of anxiety. Not only does it mean I can’t get my meds reviewed and try a different one, but my GP could possibly stop prescribing my meds as there’s nobody taking responsibility for monitoring and reviewing them. I don’t think I’ve got the rights meds but no meds? I’ve been on medication for a year, following getting diagnosed. I can’t imagine not having that option now. Yes, “pills don’t teach skills” and I have some strategies for dealing with my symptoms now but the thought of no meds is just scary. I skip taking them odd days, especially after a night shift and I don’t get withdrawals, its more about struggling to filter out distractions that worries me.
I cut out the middle man and emailed the CCG myself, to request a review through an alternative provider and to figure out who is going to be looking out for me now. I thought I’d struck gold getting diagnosed within 3 months of referral, after finally feeling close to understanding my difficulties and putting a name to them. Others have to wait years, if they can even past their GP. Now I’m worried that I will just get forgotten about and be left unmedicated as there are a finite number of providers and even the private sector (which I was under with NHS funding) seems to be struggling with referrals. I wish my ADHD had been picked up in school, but like many adults, it wasn’t. Even those lucky enough to get diagnosed as kids often have to get re-diagnosed and face long waiting lists as adults. The system is absolutely broken and underfunded. I thought I was lucky to get referred, seen, diagnosed and medicated quickly but now I may have to start again.
There’s so many of us floating about, struggling through adult life undiagnosed. Even after diagnosis, there isn’t much help in understanding what ADHD is or what strategies can help. I got a leaflet, but that didn’t really tell the full story. I should have been focusing on my PhD, but instead hyper focused on trying to understand what ADHD was. I highly recommend the book “FAST Minds” and also Jessica McCabe’s “How to ADHD” youtube channel.
So to recap, my ADHD provider closed. Fuck.
My ADHD PhD 