Regressing

It has been ages since I've posted a blog, but today felt like the right day to update.

Since I had covid-19 in April, I have found that my ADHD medication is less effective. I feel as though I have regressed. this manifests as confusion, poor executive functioning, making mistakes at work, being late for meetings, struggling to prioritise tasks, clumsiness, time blindness... but the worst parts are the memory problems, and the forgetfulness.

The memory problems include having to be told repeatedly, mainly by Nicki, things that she has already told me; for example, what time she's DJing on Saturday evening. she has told me so many times, even now I’m struggling to remember what time she's on.

The forgetfulness is more about tasks. Forgetting to feed the cats, forgetting to eat, forgetting to drink water even when it's in a bottle right in front of me. Even forgetting what I was going to write here. I've gone back to feeling like I've got early onset dementia.

And the Horrid little voice that has plagued me since childhood has returned. I was wrong about the worst parts. This is the worst part. Until May, that little voice had all but gone away, but it's back with a vengeance. If you don't have that little voice, or have never had that little voice, it might sound crazy. It tells me I'm useless, incapable, lazy, a bad person. Rationally I know I am none of those things, but my brain just won't let me have any peace.

I spoke to my psychiatrist on Thursday, I when I mentioned this had been the case since I had COVID-19, he said someone else had told him the same thing that day. of course all anecdotal, there hasn't been any research on this topic.

My psychiatrist, the lovely Dr Tari from Psychiatry UK, has a plan though, which is 2 increase my Elvanse (Vyvanse) from 50mg to 70mg, plus 10mg Dexamphetamine Sulphate (Dexedrine) in the afternoon.

Unfortunately, my blood pressure is quite high at the moment. I had a panic attack last Wednesday evening. It lasted about an hour, and it happened while I was driving. Since then my blood pressure has been really quite high. Stimulant ADHD medication increases blood pressure and so until I can demonstrate that it is reducing I won't be able to increase my dose. Moving to non-stimulant medication what mean up to two months waiting for the medication to get into my system and become affective, and even then it might not have the dramatic effect I've seen with Elvanse.

I already don’t have very much caffeine, but I’ll be reducing that to zero. I have quit smoking, as some of you may know, and today I did some Emotional Freedom Technique (EFT also known as tapping), 2 meditations, and cuddled the cat while listening to a relaxation frequency on Spotify.

• Yesterday my BP was 158/100 and my heart rate was 102.
• Today my BP was 147/89 and my heart rate was 82.

I'm going to switch to a CBD vape, get all this nicotine out of my system and let's see if we can't sort out this high BP! I need to start exercising too really, so I might start a yoga class at Arcadia (our local council run gym), but I need to get my executive functioning actually functioning before I can do that - maybe it will give me some much needed dopamine.

This has felt like a huge step backwards, just when my life was getting into a rhythm, but hopefully I’ll bounce back soon.

Fingers crossed!

Lydia

I ate too many sweets…

A C/W - intentional weight management (right at the end of the blog)

Almost three months in and I’m realising that medication isn’t everything. Without the skills I learned from Martin (my ADHD coach) at Zems Academy, I would not be where I am now. So one of the things that coaching doesn’t fix is my relationship with food. 

This morning I woke up feeling so nauseated and sick because I ate a buttload of sweets and chocolate last night.

We’ve had a big wicker bowl full of sweets and chocolate on the coffee table left over from Halloween. It’s within arms reach and I just snack snack snack all night and wake up feeling rubbish.

So today, I have put most of the sweets in Tupperware in a cupboard (out of my eyeline) and moved the fruit into the wicker bowl. 

Shopping tomorrow so there'll be more than lemons and apples

We got a lovely gift from the boys across the road last week - some cute and kitschy glass candy dishes, so I’ve put some wrapped sweets in the candy bowls and put them on the mantelpiece out of arms reach! 

How cute is the dish?

So now I can have a couple of chocolates at night, but if I want more, I’ll have to go ALL THE WAY TO THE DINING ROOM to get them! Who are we kidding? I’d be better burying them in a locked box in the garden! But I have to do something. Sugar has always been my biggest weakness, and I don’t want to end up with heart disease or diabetes.

Food doesn’t give me as much dopamine as it used to, but I still snack, and as I mentioned, it’s usually in the evening after work. The meds seems to be wearing off around 6 or 7 o’clock and then the ADHD paralysis kicks in. After I’ve made dinner, I lay on the sofa snacking on sweet stuff until bedtime, and then just scroll on my phone until I drop off (I even snack in bed some nights). It fills me with shame more than it ever has, because it isn’t even giving me any pleasure anymore… it’s just the default that my brain goes to when it is dopamine seeking. 

I think I might need to increase my dose slightly (I have an appointment with my psychiatrist on the 22nd) or split my dose a bit so I get an extra boost in the afternoon.

My weight is stable, so that’s one challenge I’m still managing, but I’m not able to exercise as much at the moment either because of my joint pain, so I’ll just have to keep an eye on it. 

A Love Letter to 2021

I wasn't allowed to do a newsletter for the cards this year… so a blog will have to do!

Every time you think a year is your best year ever, another one pops up that is even more spectacular! Of course 2011 (when I met Nickie) and 2013 (when I married her) were up there as amazing years, But 2021, despite everything, has truly been my best year on this planet. Everything came together. This is my 2021 #gratitude list.

@frustratedpoet I’m writing a blog about my first week on #Elvanse today, so I thought I’d do a #My2021 video instead. #fyp #adhd #adhdtok #drag #endo #hysterectomy ♬ I AM WOMAN - ❦ emmy meli ❦

1) Nickie and I continue to go from strength to strength. We’re financially the most stable we’ve ever been (not the be all and end all, but a nice bonus). We still fancy the pants of each other after 10 and a half years and we’re about to spend our 11th Christmas together, our 9th as wives. We are so happy together and I love her more than anybody else in the world.

2) I finally sorted out my gyny issues in the most dramatic way possible hysterectomy! (Thanks to everyone who repeatedly suggested I have it “whipped out”… you were all right! Uterus yeeting ftw!)

3) After 12 months working on the Modernising BBC News 2020 project, I was confirmed in role as the permanent Analyst/Journalist. It’s hard and detailed work with lots of spreadsheets and close work, but I love it. I rounded out the end of the year by building a new Smartsheet with loads of automation which will make the whole thing much simpler

4) After 17 years of employment, I got my first black female manager. She’s amazing, a brilliant rolemodel and trusted friend, and I am the happiest I’ve ever been at work! I'm also on a team which skews POC and female, which is nice! Feeling very much like the "future of the BBC" that Danny Morrisey always said I was.

5) Working from home has changed my life. It meant I was able to fully recover from my surgery, while still popping in on meetings when I needed to, and it also means I don’t have to mask - which is exhausting! (Also don’t have to wear a mask as I’m in my own home!)

6) I returned to Drag as both queen and king on the door of Club Tropicana and continue to thrive! Thanks to Alex for recommending me and to James for convincing me to come back. King thanks for being just a brilliant and supportive Queen, full of advice. 

Allan and Toby thanks for being brilliant bosses and for listening and actioning our suggestions. Ethan and Dave, thanks for your management skills (and for all the ciggies). Remy, you're the best doorman I've ever worked with on Club Trop thanks for the lovely chats, and all the fruit tea! 

And Stefan for… well… it’s not actually about you! #notthis

7) A special mention for Stefan... seriously Lavender, you’re one of the best things to come out of 2021. You are one of the kindest and most talented queens on the circuit, and I really hope that you know that. You have taught me so much (you're the reason I can now block out my eyebrows like a pro). I love you to death and 2022 is your year, I can feel it.

8) We decorated the hall, stairs, landing and dining room and so after 7 years, the house we live in truly feels like ours… we had the blessing of our fantastic landlord (who loves what we’ve done) and an excellent Handyman called Abraham who I can thoroughly recommend. We did this instead of going on holiday this year, and I’m so glad we did. 

9) I got to see so much of my family! Mum and Dad, and my brother and his girlfriend Rachel. And although it was an extremely sad occasion, the death of my uncle, I even got to see all of my aunties and uncles. I spent lots of lovely quality time with my godmother Denise and my god sister, as well as properly meeting my godbrother for the first time. I also saw my little second cousin Freddie with his mum and dad Faye and Tod. After 2020 it felt like I’d never get the chance! We even got to see more of Mum 2 - my mother in law Annette, we've just come back from a visit to her house in Cambridgeshire for her birthday.

10) I also managed to see some of my dearest friends for the first time since the pandemic (I'm talking about you Heidi, Cathy, Michele and Helen, Shig, Deb and the Mutants!) Our best boys, Jacub and Alex moved in just down the road, and we've been seeing them every chance we get! Even just running into people in the Village who I haven't seen for ages (Lee, Akkers, Bonnie) has been lovely.

11) I realised/came to the conclusion that I might be neurodivergent. Everything in my life pointed to the fact that I am not really the same as neurotypical people. I actually stopped procrastinating for long enough to write to my doctor for a referral via Right to Choose, and in the meantime applied for ADHD coaching through Access to Work.

My amazing coach, Martin, from Zems Academy has been truly life changing. He helped me to put strategies into my life which helped me manage the day-to-day before I was able to see the psychiatrist, and his suggestions and advice remain in my life to this day (he is the reason we have 4 Alexas (would be more but they don’t do them for the bathroom! My next car will have her build in!)

12) This is the really big one… after 36 years and 364 days on this planet, I was diagnosed with ADHD on the 3rd August 2021. Learning that I have had this since childhood, and reflecting on my life up to this point hasn’t been easy.

Thinking about how different things could have been if it had been recognised earlier has been particularly hard and in the past 4 days, I lost a longtime friend who’s girlfriend feels I am too much, too overbearing, that I consume my friend to the detriment of others, and that I talk over her too much. It came without warning and broke my heart. It's the first time I have lost a friend in full knowledge that it is because of my ADHD, and that was really really tough.

But knowing how much of my behaviour can be explained has been huge. I’m not always lazy, I have executive dysfunction. I don’t always get obsessed about things and people, I hyperfocus on special interests and new friends. And perhaps I was never even depressed! I have a chemical deficit (dopamine) which means that I struggle to find joy much of the time.
This is me, and if you don’t like it… bog off! 

13) I decided to stop doing Black Lives Natter - I couldn't commit enough of my time to this brilliant project, and that wasn't fair on my podcasting partner Eljai, so I stepped back so that she could work with somebody who could be more dedicated and help the project really soar. I can't wait to hear it!

14) This is another really big one, perhaps bigger than the diagnosis! On the 26th November, I started medication to treat my ADHD. I think if I hadn’t started off with the coaching, the meds would have been a sticking plaster. But combined with the strategies I have learned with Martin, I have managed to change everything about my life in a positive way.

@frustratedpoet This is a game changer… #fyp #adhdtiktok #adhdtok #adhd #elvanse #adhdmeds #meds ♬ original sound - Lydia Bernsmeier-Rullow

My disordered eating is finally under control, I no longer mindlessly snack, and I am finally regaining control of my weight (this is a positive for me, and not a judgement of anybody else). 

I have started cleaning at home - I even managed to completely clean up after a party 2 days after my first dose without Nickie’s help (as she was poorly) - this is unheard of!). I made address labels (and return address labels) for our Christmas cards, and sent them out in time for Christmas. I even managed to send some to the States early enough (for a change). This might seem like such a small thing, but it really isn't - I've always wanted to be the person who sends lovely cards to my friends, but they always arrive late, or not at all, or people have received 2 because I forgot I sent them. But not this year! Even wrapping the presents seemed effortless. 

I can't believe that these 2 little pills, taken every morning, could help so much. The chattering in my brain has stopped. I can remember things I need to remember! I use my work diary for EVERYTHING - even personal stuff like appointments and reminders to fill in my Psychiatry UK forms... and I haven't missed one yet.

Before meds, before diagnosis, before coaching I managed to miss an appointment at the hospital at a time I was there getting coffee. I would walk things shouting about how I couldn't find them. I would struggle to wait my turn in conversations, knowing that if I didn't say it now, I would forget it. My brain would tell me cruel things about myself 24/7. All that has stopped.

And that's why the loss of my friend is so hard. We haven't seen each other since October, but she knows I'm now medicated, I've done nothing but post TikToks about it for a month. She didn't even give me the chance to demonstrate the change before cutting me off (via Nickie by the way, she didn't even message me). She's never met the calm and capable medicated Lydia, and doesn't want to... So I guess I'm going into 2022 without her, and maybe that's a positive. 

BUT I don't want to end this on a sad story. This blog deserves better... so I'll talk about my plans for Christmas 2021. 

Merry Christmas from the Bernsmeier-Rullows

Nickie and I have both tested negative for Covid, which is worth saying at this point - I feel so blessed as so many of our friends have been testing positive and/or falling ill with symptoms. We truly are the lucky ones. All of the shopping and wrapping is done. I've got my lovely Jammy Red Roo wine for my night-cap, and some alcohol free Nozeco for tonight's Christmas Eve gathering at Jacub and Alex's. 

My parents are coming for Christmas Eve lunch today, it'll just be the three of us as we're having lamb (Nickie hate's lamb), and Nickie is out for her traditional Christmas Eve last minute shopping day. And tonight, I'm going to go to Midnight Mass at the local church. I had something of a spiritual reawakening a couple of weeks ago, so I'm going to go to church for a service for the first time in several years.

Tomorrow it will be just the two of us for an all American Christmas lunch (fried chicken, Cornbread, greens and mac and cheese, root beer), home made sausage rolls (another tradition), presents, tv, and not much else. Bliss. And then we've got a nice few days of doing nothing but eating Doritos and dip and spending time together. 

Could it get any better than that?

Merry Christmas every one,

Lots of Love,

Lydia xxx

A note on executive functioning...

 I wrote this last year as a Facebook post, but I think it makes a better blog...

Photo by Alex Green from Pexels

I talk a lot about executive functioning (EF), but about a year ago, I experienced something which serves as a perfect example...

That afternoon after my appointment I had to rush back to my desk so I put my coat and bag on my bed.

(1) Of course I didn’t even notice it for the rest of the afternoon... 
(2) I decided to have a bath and thought, I must take the coat and bag downstairs... 
(3) I got out of the bath and realised I didn’t take my towel in the bathroom... 
(4) So I went out of the bathroom, dripping wet, to get a towel from the bannister 
(5) I saw the coat and the bag on my bed and thought, I must take the coat and bag downstairs... 
(6) I dried off in the bathroom and then 
(7) went into the bedroom in my towel... 
(8) I got dressed and put the towel on my bed... 
(9) and then remembered I needed to take the coat and the bag downstairs AND put the towel back on the bannister... 

(10) when I picked up the coat, my purse was on the bed...

All of a sudden there was this extra element and it was like I couldn’t work out how to get the purse in the bag, the coat and the bag downstairs, and put the towel on the bannister. My brain was totally discombobulated... it took me a couple of minutes to recombobulate myself...

(11) And put the towel on the bannister, the bag over my shoulder to take downstairs, the purse in my hand and the coat in my other hand... 

(12) I walked down the stairs and hung my coat on the hook... 

(13) hung the bag on the stairs... 

(14) and FINALLY put my purse in my bag...

Each of these steps was a conscious thought. Not a lot comes automatically (except maybe driving)

This is executive dysfunction #neurodivergent

it’s just one step for neurotypicals!

I also think this is why I miss steps out of activities too, and Nickie will say ‘Why didn’t you put the vase on the floor before you tried to open the freezer?’ But in my mind it’s a step that doesn’t even register - the ‘put the vase on the floor’ step was filed under ‘not a step in this process' and I didn’t even think of it. This is what makes it SO difficult to form habits because the process is never linear in our minds.

I can manage simple habits, like taking my meds, most of the time... but even that can be screwed up because I sometimes forget... and if something changes... well... I’ve nearly taken double of my meds (because it’s now 1 bigger tablet instead of 2 small ones!) I’ve taken 2 large tablets because that’s what I’m used to. And I’m also struggling to add an iron tablet to my regime, even though the iron tablets are NEXT TO MY OTHER MEDS! It’s a change and my brain is like ‘wtf? nope. shut it down!’

And you might wonder ‘why don’t you just do it now, while you’re thinking about it?’ Well, I raise you a month old bottle of Barocca that I see every day (after forgetting about them in the morning also) and STILL don’t just put it in a glass! And why? It’s a bigger process, with more steps than you think... For neurotypical people, taking a Berocca is a single step process...

(1) Get a glass of water and take the Berocca.

For someone with an executive functioning disorder, this is so many steps...
(1) Go downstairs to the kitchen
(2) Get a glass out of the cupboard
(3) Take the glass upstairs
(4) Look for the Barocca
(5) Realise you’ve left the Barocca downstairs
(6) Walk downstairs and go to the kitchen
(7) Find the Barocca on the side
(8) Put Barocca in the glass
(9) Walk upstairs
(10) Sit down at your desk and put the glass on your desk
(11) Check your emails
THREE HOURS LATER

(12) Drink the Berocca

The really bizarre thing is that I only noticed this was weird just recently... Like I really thought that neurotypical people were actually processing these millions of steps, in real-time, in the right order, perfectly? Nah, it’s just one step for them... helped me understand a lot of my life over the past 20 years... 

Down with the sickness

Despite being quite physically poorly last week with laryngitis and a bad cold, it has been a positive week (not least because it wasn't Covid, I did 3 tests!) I put this down to doing actual self-care, and resting.

But what does that have to do with my ADHD? 

I have spent so much of my life giving myself rules like "if you take a day off work, you can't go out at the weekend, even if you feel better" and "if you're well enough to sit out in the hammock all day, you're well enough to go to work ". I have always punished myself for being unwell, but I have never known why. This generally leads to me going into work sick until somebody sends me home, coming back to work too early and having to go sick again, or missing out on things that I am actually well enough to do because I feel like I don't deserve it. 

This is due to an inability to emotionally regulate, and RSD - Rejection Sensitivity Dysphoria. Being criticised causes physical pain and makes me believe that; everyone hates me, I'm going to lose my job, I have upset my wife... etc etc. Because of this, I often struggled with taking care of myself. I would go to work when I was clearly too ill. I would push through pain. I would deny myself basic self-care as I punished myself for stuff that wasn't my fault.

But last week was different. I cancelled my Monday walk as I just couldn't manage it. I also cancelled my exercise classes (and got a credit note so I didn't lose any money). I also didn't punish myself for not going to aquafit or the gym. I was ill, and even though it's not covid, it was really important that I avoid interacting with too many people.

I had a bath, let the steam soothe my sore throat and relaxed with my VirginGo app and QI on Dave. 

I actually went to the doctor, something I have avoided doing through the pandemic. I thought it might be tonsillitis because I could barely speak and couldn't swallow. 

I took a day of sick leave on the advice of my brilliant manager so that I could actually recover.

That was last week. 

This week, Nickie has caught my lurgy, but I'm at the tail end... thankfully! So we're doing everything we can to improve our immune systems - vitamin c, Yakult (because gut health is so important to overall health), plenty of rest, chicken soup... 

Should I have been a troubadour?

I had a thought the other day, about how “ADHD and Autism never existed in history”, and realised that in pre-industrial society, autistic people, who weren’t very good at socialising, but knew every detail about every sheep in their flock, probably made brilliant shepherds who would happily stay on the moors with their sheep. 

And ADHDers who were creative and couldn’t keep still were probably troubadours and artists, or fruit pickers who moved from town to town. 

It’s only since the industrial revolution began that working in tedious professions for 8 hours per day, and enforced socialisation has made life unbearable for neurodivergent people. 

Even today, in those communities that don’t rely on 8 hour working days, and see people for who they are and what they can bring to the entire community and not how productive they are, you don’t really hear about ADHD and autism… they aren’t a problem needing to be fixed, just different neurotypes that fit into society.

Maybe I would have made a terrific troubadour…

What do you think?

Chaos

What a weekend, and back to work tomorrow. It was Manchester Pride and I did a couple of drag shifts on the door of Club Tropicana. Brilliant! 

The only problem was that it threw my routine out of whack! So, I forgot to take my medication (anti-depressants) on Saturday, couldn't sleep Saturday night until 6am, and was so busy on Monday that I barely sat down. My dopamine levels were, and still are, on the floor. I left chaos throughout the house, and even though Nickie kindly tidied my office on Saturday afternoon, by the next day it was a mess again.

I then took my medication late on Monday and then wondered why I was having stomach cramps on Tuesday - a sure-fire indication of Citalopram withdrawal (that's my anti-depressants). This always happens when my schedule changes; whether it's a change in work schedule (the main reason I prefer a 9-5), an event (it always used to happen when I was hosting my drag night), or even just some annual leave, if I'm not doing what I'm normally doing on any given day, I lose the ability to manage my day.

It's another "why can't a be normal" thing. My plan for my two post-Pride days off was to clean the house, but I ended up completely muddled, exhausted, and unable to put tasks in order. I managed my aquafit yesterday, but couldn't swim today (I'm just too tired). This is why I try not to promise anything. I won't say "I promise to clean the house" because I'm often just not able to keep my promise.

The worst part of all this is that, while my body is on the verge of burnout, my brain continues with its nonsensical, rapid ramblings, switching from idea to idea, thought to thought. 

The good news is that I'm now on the titration list - titration is the next step in my ADHD journey where they try me on different doses of medication to work out which works best for me. The bad news is that the waiting list is 6 months long, and not the 12 weeks that I thought it was... but I've gone 37 years without ADHD medication, so what's another 6 months eh?

I'd better go and make dinner... hope I don't get distracted on the way downstairs!