Why I am awake at 4:30am
It's 4:22 am, I'm in bed (and have been since about 10:30 pm last night) but I haven't been to sleep yet.
As soon as my head hit the pillow last night my mind was racing. A hundred different thoughts, all at 100mph...
A couple of months ago I learnt that there was (and very much still is) a *worldwide* shortage of my ADHD medication.
I feel it's important to stress here that I learnt this from a LinkedIn post, not my GP, not the clinic who gave me my diagnosis who I paid over £1000 for the privilege, a LinkedIn post gave me this life changing news
After not having any meds for about 2 months, I was pretty much at rock bottom and I was holding on by a thread. After putting my usual prescription in for other meds, I ticked the box for my ADHD meds as I always do. You know, just in case.
Just before Christmas, to my absolute surprise the pharmacy informed me they had actually been able to order just 2 bottles of the 50mg tablets (my prescription is for 70mg a day). And I would be able to collect a bottle the next day (28 tablets).
I decided that to try and make them last (as LinkedIn has also recently informed me that it's unlikely that the medication will be available now before April, and even then it will be "intermittent") I would only take them on work days.
Now that brings us to today, and it's now 4:34am. I am confident that after not taking my meds for weeks and weeks, the sudden intake of 50mg a day for the last two days has left me in this "wired" state I currently feel I'm in.
My medication clearly states on the label "Do not STOP taking this medication. Seek medical advice before stopping". Yet I was left with absolutely no choice but to stop. I wasn't even told there was an issue with my medication until we were in to well over a month of the shortage and I got a text message from the pharmacy team that stated:
"Dear Carly,
Hi
We have being notified there is a shortage of Lisdexamfetamine medication. Please do not worry, if your pharmacy is struggling with supply you can try alternative pharmacies who may have stock or contact your GP or prescriber.
Thank you
PCN Pharmacy team"
The "Please do not worry" was, in my opinion, the standout part of the text message. Do not worry?!? Do not worry about the fact that the one thing that has enabled me to function for the last 2 years has suddenly, and without warning, been snatched away from me... I'm not saying the pharmacy team, or my GP or my clinic should be expected to magic me up some pills. But shouldn't there be at the very least some sort of duty of care, a check up? A conversation?!
I am very very aware that I am not alone in any of this. I am also very very aware that I was extremely lucky to get hold of a bottle, albeit not my usual strength, but it is far better than nothing. Most of my frustration is coming from the NHS letting me, letting so many people, down yet again.
So, it's now 5:36 (I got wildly sidetracked for a while designing the little article picture with the empty pill bottle, took me way longer than necessary but you know... ADHD...) and I'm due to start work in just over 3 hours. I haven't slept at all tonight. I've not even managed to get a few sneaky minutes in. Yet my body (and my brain) feel so exhausted. I know I need the sleep, but as exhausted as I feel I can not shut this brain of mine off. No matter how hard I try (the harder I try the worse I seem to be making it!).
To finish this, what I realise has now just become a middle of the night ramble, I want to touch on something positive that has come out of this dreadful situation.
I have opted to start ADHD Coaching. I've had two sessions so far with Joseph Pack. I wasn't sure about his style at first, as his whole ethos is 'Drug free ADHD' and I've never had any issues taking medication, if I need it. I firmly believe that if you need medication, if medication helps you then why wouldn't you take it?! That was until I was thrown into a 'drug free' situation with absolutely no say in the matter. Come April I might be able to get medication with absolutely no issue, but one big lesson I have learnt from this is that I don't currently have the right tools to allow me to manage if I suddenly have no access to my meds again.
My sessions will cover many things, but in particular breathing exercises and cold water therapy. Two sessions in and I am massively inspired by Joseph already. Not only is he a really lovely bloke, but he genuinely cares and wants to help. And I am confident that even if I don't quite manage to get completely drug free by the end of our time working together, I will be much more prepared and able to deal with this situation if it ever arose again. I am also confident that I will have learnt a lot about ADHD, and more importantly about myself.
If you're interested to learn more on the topics I've discussed here are some links:
ADHD : https://adhduk.co.uk/about-adhd/
Joseph Pack : https://drugfreeadhd.substack.com/
Medication shortage: https://www.cas.mhra.gov.uk/ViewandAcknowledgment/ViewAlert.aspx?AlertID=103238
https://pharmaceutical-journal.com/article/news/around-85-of-patients-on-adhd-medication-have-been-affected-by-shortages-survey-indicates
**This is a throwback to something I posted back on January 4th 2024, before I came off my meds, but it’s a great insight into what my life was like on meds and just before I properly started coaching with Joe.
