This is a global player original podcast. Hello, I'm Katie Breathwick and I'm Sam Pittis and welcome to our new podcast, You're Wrong About ADHD. No, you are. No, you are.
This is stupid. It's obvious. Sam and I have been friends for nearly 20 years and a couple of years ago, we both found out we have ADHD. But I think it's fair to say we feel very differently about this.
Getting an ADHD diagnosis, answer lots of questions, but also raise new ones. Each week we're going to be talking about everything from our experiences being diagnosed as adults to relationships, coping strategies, and how we manage these very special brains. So we can learn more about ADHD and what it means to be neurodivergent. Hello, Katie.
All right. Yeah, I'm all right. We're going to talk about ADHD medication today and specifically medication shortage. It's an issue across the country for so many people and Katie is now an issue for you.
And yesterday, last night, you sent me this video message. I have lost count of the number of chemists that I have called us after an inch to try and track down a supply of elephants, which is the drug that I take for my ADHD. I don't blame them, but pretty much everyone who picked up the phone to me laughed when I asked if they had any in stock. There's a national shortage and everyone wants it and no one can get hold of it.
And a week ago, they were saying, if you're on elephants for tea, see if you can get a prescription for elephants 20, but get twice as much and there's not that left anymore. So that's all gone. And I have five tablets left. So I'm now going to sit down and die rise the days when I take them because it's Christmas and the invisible load is looming.
And we've got 16 people in this house in less than a month. And I just can't imagine how that is going to happen without my drugs. Anyway, I know I'm not the only one. So how are you today?
Well, as will I have an apparent in that clip, it's a really difficult thing because I'm aware that there's almost like a sort of Jekyll and Hyde version of me. When I take my meds, I am efficient. I show up. I can do stuff.
I remember I am a really good version of me and I am still me, but I'm definitely a version of me that works when I don't. A lot of that stuff falls away, not all of it and not every day. But on some days, all of it falls away and life can be really, really difficult. And I have five tablets left and I spent the afternoon trying ever to spiral on Google maps, basically going out from the town where I live, going out further and further until I was miles away.
And every single pharmacist who picked up the phone to me either laughed or sighed to tell me that there is no elvens available. And I am aware that I am staring down the bar of the gun at Christmas. There's less than a month to go before a bunch of people descend on my house. I've got to have beds made.
I've got to have carpets hovered. I've got to have all the Christmas presents wrapped. I've got to have them bought first. I've got to decide who's going to sit where.
I've got to clear out that corner behind the piano that I've been meaning to do for well every year that I know my mother will judge me for. And there is so much that I need to get done as well as my job and making sure that everything else fits into my life and my kids are OK and picked up from school and et cetera, et cetera. And I despair at how that is going to happen without this wonderful little pill that makes things happen. And it's tricky because I am also aware that I'm one of the lucky ones.
I have a support system, I have a wonderful husband who looks after me and does things for me and helps me. I'm also somebody who can justify that. I don't take them every day. I don't always take them at weekends, but they definitely, definitely help me with my emotional dysregulation.
And that's probably the one aspect of my life that I'm really, really worried about. I'm really worried about the fact that my anxiety will increase, that I will feel more paranoid. All of the things that I sometimes feel without the evidence. Mate, I'm so sorry that you're in this position.
Do you know what? I was thinking, you know, we've heard this story from so many people and we've had a conversation before where you've gone hang on, my medication runs out and you've been OK so far. How did you, how did you find out? Did you ring your normal pharmacy first?
And then you suddenly went home I would. I was, I was warned the last time I picked up some taps from her that this was coming. So I'd already been reducing taking them, you know, I wasn't taking them every day. I was taking them less.
I was being very, very careful and sort of eking the tablets out. And when I rang her yesterday, you know, she was, she was one of the first to just go, Oh, I'm really sorry. But you know, it's just not happening. There is this worldwide shortage.
And, you know, another pharmacy said we are applying every single day to try and get hold of stock, but you know, we can't get them. And the big question for me is when are they coming back in? I've got five tablets left. I have diorized those five tablets so that I can plan those days and try and get everything done on those five days and make sure that I show up on those days and I am myself.
But you know, it's not just about me. It's, it's the fact that you go onto social media and you look for, if you do a little search for Elvance, shortage or ADHD medication, these heartbreaking messages will pop up from people who are clearly worried that their marriage will fail or that they will lose their job or they've got kids who without those drugs are climbing the walls and will probably get excluded from school. And let's not be about the bush here. There are people who will lose their lives because of no elephants.
Because we know from talking to people at homey-shelford from ADHD UK that it reduces anxiety, it regulates emotion. It does all of these different things. It plays such an important part in keeping people on the straightenerium, getting them back on an even keel. And at this particularly difficult time of year, Christmas is always really stressful.
You're forcing to a small space often with people you don't like. Let's be honest. And it's incredibly emotionally draining. And for some people, that lack of medication is going to prove too much for them.
And I really, really worry for the mums who've got too much on their plate, the students who are alone at university who we know are already struggling with executive function and wondering why they can't get everything done. It's crazy that we are in a situation, whatever the cause, that there is medication that people need to function and they are having to ration it. And you are right. In some sense as you have got a good support network around you.
But what are the things that you are almost concerned about? I mean, what are the things? What is it? I don't want to put you on the spot too much.
But what is it that you're afraid of? Well, I have a wonderful husband. I know that in the past I've been a bloody nightmare to live with. And that turned out to be a combination of menopausal symptoms in combination with my ADHD.
And I don't want to go back to that version of myself. I was awful and I saw myself reflected in his face when I opened my mouth on a couple of occasions and he was clearly finding me an impossible person to share his home with. So that's the first thing. I don't want to be a bitch of a wife.
That's the first thing. I also don't want to be the type of mother that I can sometimes be, which is forgetful. But that's the least of it really. I can be ratty and I can shout too easily.
And the house is immersed. That's all for my kids because they're having to live in a home, which isn't ideal for them. I want to be the mum. Everyone wants to be supportive and organised and kind and listen and remember.
And Elvance helps me be that person. All of those things come with Elvance. Of course. And I suppose, you know, look, I'm not necessarily a voice of wisdom, but I'm someone who the medication doesn't work.
I have thought about you actually a lot over the last 24 hours because I have survivor's guilt when it comes to this because I know, I know from our conversations that actually I am one of the lucky ones. I am one of those 85% for whom the meds work. And in all of this time, they haven't worked for you. And you've had to find other ways to regulate all of these things that I'm talking about.
But I suppose you could look at it from the centre of maybe my ADHD works in a different way so I don't need the medication. I mean, I don't know. You could look at it that way. But yes, I mean, I'd love there to be some medication I could take that works.
I suppose what I was going to say to you was though, you've got to give yourself a break. This is the time to give yourself a break. This is where you say to yourself, you know, first of all, you aren't going to go back to how you were before because you know you've got ADHD. You know what's causing some of the problems and behaviors in the past.
You know the things that you struggle with. You need to give yourself a break. But you also need to ask for help. And what do you like taking help?
Yeah, not great. But that is going to be a challenge for you. And one that you're going to have to me. You're going to have to say, again, you know, here's me saying you're going to have to.
I know you won't have to. I know you won't enough. I can say this as a friend. You are.
You are going to have to do it. Christmas stage. You know what? Things are going to have to change.
Are you able to do that? Yeah, well, I think you're right. I am going to have to. And I thought about it last night.
I thought about this sort of slightly narcissistic version of what Christmas is going to be. Oh, Katie's not on a bed. So therefore, you know, guys, you're going to have to go easy on her. But actually, I think that is what I'm going to have to do.
I'm going to have to quietly get in touch with somebody in each of the families and just say, look, this is the situation. So it's not going to be the perfect Christmas. And I might have to slip off on occasion and just go and be on my own for a bit. And that's OK.
And that's OK. Yeah. And I hope you feel that. Absolutely OK.
And people will understand. And you're also not you're not suddenly going to become this terror of its own miserable figure. Still you don't know. Still you.
Still you. But that's the thing. I'm not so sorry to say this because meds don't work for you. But one of the ways in which Elvis has been brilliant has been that emotional regulation.
It just it's just it's like it's a calm sea on a calm day and I become a rational person. And without it without Elvis, I definitely my brain becomes physio sometimes in a good way, you know, on a bad day in a bad way. And that rationality is gone. And I think people think he was thinking about me, but they're not.
And I wonder if I become a bit aggressive, actually, I suppose I'm not trying to invalidate what you're saying because I totally understand your concerns and I said, I'm saying where you're coming from. And obviously I do because I know you and I've known you for years. But I'm just trying to say, hopefully you'll be able to hold on to the fact that you're still you and you're still in an environment with people who care for you. But I think it's not putting stumbling blocks in your way that you know I'm going to trigger some of the behavior that you're concerned about.
So saying, for example, it's OK, I'll do the dinner for 16 people. I'll take hand. I'll handle it all. I'll lay all the places.
I'll do everything. You can't do that. It's making sure that you are able to stop and say, hang on a minute. You know what?
Everybody's coming all day. I'm going to do that. You know, I'm going to do this. I'm going to do this because it's not a time in the day where I can slip off.
When I put that, you know, you're not just saying what I may need to do that. You specifically say to your husband in the morning. And this time of the day. I'm going to go and do this.
But again, you know, it is that sense of he also needs to do that. I know that he also finds Christmas. You know, and it's it's that sense of I don't want to make this flipping thing about me. It's ill, doesn't it?
It's ill. It's absolutely ill. And you're going to have to find a way to go through Christmas without a pill that seems to solve everything for eight to ten hours. And I just do not.
My biggest question. biggest question sitting here as we chat about this is at what point does this start to get better? Because yes, there's Christmas on the horizon and that is my biggest worry. But then we go into January and you know January has its own challenges in lots of ways.
I really would you know I would I would really like some answers as to when we will get stock back in the pharmacists and when I was asking them yesterday they were all clueless and it's not their fault. They've got no more information than they have and they are they are as bewildered as I am that the shortage is as it is and I would love to have a sense of you know if they were able to say well it's going to be December which is what we've told great I can make my five tablets last until Christmas thirty-five September celebrate because then you know the stock will be replenished but if we are going into January and as some are suggesting on social media it's going to be March before we get our hands back forget me I will be okay I will be a bit nutty and a bit unpredictable but I'm going I will still be here but if it really is March there will be people who won't be and that's the thing that is so terrifying and so sad that for some people this is the difference between life and death and it's awful it is a really awful situation for so many people it's a really painful situation and if you are struggling to get your ADHD prescription this is what the NHS says the first thing is to try other pharmacies as another one may have it in stock they've got a find a pharmacy page on the NHS website www.nhs.uk your local pharmacy may also help you to find a supply and you can ask for your prescription to be made available to other pharmacies that's if you need to get it from somewhere else if you're still unable to get your prescription the NHS says to contact your GP or ADHD service for advice specifically says do not try to substitute other medication yourself as this may be dangerous which I think is a really good point well I think you know I just kind of hold my hands up at that because it's like none of that I'm afraid it's helpful to me because I know that where I am takes back two weeks get a GP appointment so you can't go to your GP to get a different diagnosis for a different drug because you can't get an appointment I've tried every pharmacy I've run around every pharmacy they don't have it they are you know they're laughing with frustration because there is none available it is a ridiculous situation but I think it's really important to say that we will get through this and we can get through this and one of the most important things is to let yourself off and if you need to take a break take a break if you need to be on your own and go and listen to beautiful music which I frankly helpful go and do it and yeah you're gonna drop balls you're gonna make mistakes I think that's okay I think that's the big thing about giving yourself a break if you get it wrong if there's a situation that doesn't go right do you know what it happens and it's gonna happen don't beat yourself about it and there is always help and support from the Samaritans on 116123 do check out ADHD UK the ADHD foundation or mine's dot org dot UK they have help and support as well 80 thank you for sharing your story with me I hope everything's okay and I do think you said it enough but I think it bears repeating you've got to give yourself a break quite right wise words from my friend Sam you can listen for your wrong about ADHD for free on global player downloaded from the app store go to Global Player dot com see you next time