#neurospiciness — Public Fediverse posts

"Just try harder". If those 3 words make your stomach sink, you're not alone. For those of us who didn't learn we were autistic or ADHD until later in life, "Just Try Harder" wasn't advice: it was the soundtrack to our life; the unrelenting drumbeat that pushed us towards burnout, reminding us that our effort would never be enough. When you don't know your AuDHD, which is a combination of autism and ADHD, you're trapped in a cycle that just never stops. Your struggles are significant enough to impact every aspect of your life, such as work, school, and relationships. But because you can sometimes push through and bend yourself to meet expectations, people assume you always will. Those expectations shifted the baseline until overexertion became your normal. And eventually the belief that even your best wasn't enough quietly created an inner monologue of self-blame. Over time this negative self-talk turned into something darker: the belief that you were fundamentally broken. You didn't wanna feel broken: you wanted to feel accepted and to stop feeling so different, so you vowed to try harder. And for a while, this mindset helped you survive in a world that never felt intuitive. You learned to compensate. While most people move through their day on autopilot, you had to think through every task, every conversation, and every decision just to keep up. Nobody knew that you were manually filtering sound, light, and texture instead of tuning them out, or that your emotions often hit hours or days later. They didn't see you wrestle with invisible resistance every time you needed to switch tasks, or you breaking tasks into tiny steps just to start what they could do automatically. You camouflaged this effort well: a response that was part endurance, part strategy. Sometimes it meant biting through hours of anxiety just to make a one minute phone call, or rehearsing every conversation in advance so you wouldn't say the wrong thing. Other times, it looked like rewriting emails or messages 10 times to perfect your tone. Maybe you set alarms to eat, drink water, and rest because your body's signals were unreliable. Perhaps you smiled your way through the noise and expectations, holding yourself together while every part of you screamed for relief, pretending you were fine until you finally shut down in private. Living this way is like trudging through knee-deep mud while everyone else walks on a sidewalk. When they say "just walk faster", it's because they can't see the mud, and because you can't see their sidewalk, you assume the problem must be you. So you keep pushing. All that pushing past your limits convinced your body that slowing down meant failure. But eventually your body made the choice for you because "just try harder" was never sustainable, and our bodies were never designed to live in "fight or flight" indefinitely. Those decades of constantly pushing beyond your natural capacity built the foundation for severe chronic burnout: the kind that no amount of rest can truly repair. Burnout showed up as mysterious health problems that slowly accumulated until you couldn't ignore them any more; exhaustion that sleep couldn't fix; insomnia that trapped you in loops of rumination instead of recovery; muscles so tense that aching became normal; digestive issues from constant stress. And the reality is you can't outwill a nervous system that believes it's in danger. Eventually, it stops asking for rest and starts forcing it. For many of us, that physical collapse became the wakeup call that something needed to change, and in seeking that change, many of us finally stumbled upon our ADHD or autism diagnosis. When you finally got the diagnosis, it didn't just give you a label: it gave you context. Suddenly, your story made sense. You weren't broken: you were doing the best you could to function in an environment that was never designed for the way your brain works. The contradiction that defined your life, excelling in some moments and freezing in others, finally had an explanation. It wasn't inconsistency or lack of effort: it was AuDHD. Now, understanding this doesn't erase your struggles, but hopefully, it can help you separate your worth from your performance. Because here's the truth: you weren't trying too little, you were trying too much. You weren't lazy: you were fighting invisible resistance every single day. That sensitivity, well, you were processing more input than anybody realized. They called you difficult while you were overaccommodating everyone else. Unreliable? Well, you were battling executive dysfunction that made simple tasks feel impossible. No, you didn't fail at being neurotypical: you succeeded at surviving in a world that wasn't built for you. And the amazing part is that you didn't even know you were doing it. You might have pushed through by telling yourself that, well, everybody has their struggles. So you kept showing up and kept trying again and again and again. Every day you didn't give up was an act of extraordinary resilience that no one recognized, including you. But now you can finally stop trying to be someone you were never meant to be. You don't have to keep measuring your worth by how well you meet other people's expectations. You can begin to see your value for who you already are: not who you've been told to become. Because willpower was never the answer: understanding yourself always was. Your brain is extraordinary. Think about what it has survived and everything it is still capable of. You've been strong for so long, carrying a weight no one could see, and now you can finally put it down. Not because you're giving up, but because you finally understand that that weight was never yours to carry in the first place. And letting that go changes everything. If this video validated your experiences, helped you find the words to explain what you've been feeling, or comforted you in knowing you're not alone and that others share your journey, please consider joining me on Patreon at AuDHD Hub. There you'll find an expanding library of free resources, access to community, and optional paid tiers for deeper support. Together, we're building a space where AuDHD adults can connect, learn, and finally feel understood. Thank you so much for being here today. I'll see you next time.

(Apologies again for the delay. Life got in the way, and then we had to correct some errors in the transcript / subtitles from Karen's video.)

#ActuallyAutistic #ADHD #AuDHD #neurodivergent #neurodivergence #neurospicy #neurospiciness #AuDHDHub

Had follow-up with ADHD med provider earlier today. Went very positively.

Sticking with split dose of lisdexamfetamine (Elvanse) at 40 mg then 20 mg (~2 hours apart) daily.

Increasing guanfacine (Intuniv) dose from 4 mg to 5 mg nightly.

The imbalanced lisdex dose is helping more with giving us more of a morning boost, whilst letting us wind down faster in the evenings.

The guanfacine is continuing to help with RSD and baseline anxiety. Also counteracts the increased heart rate and blood pressure of the lisdex.

The meds aren't a miracle fix for everything AuDHD related, but they make it possible to function during continued burnout... and that's saying something.

#ADHD #AuDHD #lisdexamfetamine #Elvanse #guanfacine #Intuniv #neurodivergent #neurospicy #neurodivergence #neurospiciness #AuDHDBurnout

Had follow-up with ADHD med provider earlier today. Went very positively.

Sticking with split dose of lisdexamfetamine (Elvanse) at 40 mg then 20 mg (~2 hours apart) daily.

Increasing guanfacine (Intuniv) dose from 4 mg to 5 mg nightly.

The imbalanced lisdex dose is helping more with giving us more of a morning boost, whilst letting us wind down faster in the evenings.

The guanfacine is continuing to help with RSD and baseline anxiety. Also counteracts the increased heart rate and blood pressure of the lisdex.

The meds aren't a miracle fix for everything AuDHD related, but they make it possible to function during continued burnout... and that's saying something.

#ADHD #AuDHD #lisdexamfetamine #Elvanse #guanfacine #Intuniv #neurodivergent #neurospicy #neurodivergence #neurospiciness #AuDHDBurnout

Had follow-up with ADHD med provider earlier today. Went very positively.

Sticking with split dose of lisdexamfetamine (Elvanse) at 40 mg then 20 mg (~2 hours apart) daily.

Increasing guanfacine (Intuniv) dose from 4 mg to 5 mg nightly.

The imbalanced lisdex dose is helping more with giving us more of a morning boost, whilst letting us wind down faster in the evenings.

The guanfacine is continuing to help with RSD and baseline anxiety. Also counteracts the increased heart rate and blood pressure of the lisdex.

The meds aren't a miracle fix for everything AuDHD related, but they make it possible to function during continued burnout... and that's saying something.

#ADHD #AuDHD #lisdexamfetamine #Elvanse #guanfacine #Intuniv #neurodivergent #neurospicy #neurodivergence #neurospiciness #AuDHDBurnout

Had follow-up with ADHD med provider earlier today. Went very positively.

Sticking with split dose of lisdexamfetamine (Elvanse) at 40 mg then 20 mg (~2 hours apart) daily.

Increasing guanfacine (Intuniv) dose from 4 mg to 5 mg nightly.

The imbalanced lisdex dose is helping more with giving us more of a morning boost, whilst letting us wind down faster in the evenings.

The guanfacine is continuing to help with RSD and baseline anxiety. Also counteracts the increased heart rate and blood pressure of the lisdex.

The meds aren't a miracle fix for everything AuDHD related, but they make it possible to function during continued burnout... and that's saying something.

#ADHD #AuDHD #lisdexamfetamine #Elvanse #guanfacine #Intuniv #neurodivergent #neurospicy #neurodivergence #neurospiciness #AuDHDBurnout

Had follow-up with ADHD med provider earlier today. Went very positively.

Sticking with split dose of lisdexamfetamine (Elvanse) at 40 mg then 20 mg (~2 hours apart) daily.

Increasing guanfacine (Intuniv) dose from 4 mg to 5 mg nightly.

The imbalanced lisdex dose is helping more with giving us more of a morning boost, whilst letting us wind down faster in the evenings.

The guanfacine is continuing to help with RSD and baseline anxiety. Also counteracts the increased heart rate and blood pressure of the lisdex.

The meds aren't a miracle fix for everything AuDHD related, but they make it possible to function during continued burnout... and that's saying something.

#ADHD #AuDHD #lisdexamfetamine #Elvanse #guanfacine #Intuniv #neurodivergent #neurospicy #neurodivergence #neurospiciness #AuDHDBurnout

We've been on a split dose of lisdexamfetamine (Elvanse) daily for a while now. This has involved 2 x 30 mg doses, typically between 90 to 120 mins apart.

As of today, at our request, we're trialling a split dose where we start with 40 mg, then follow that with 20 mg within the same approximate time window.

The hope is that this will help give us a little bit more of a quicker boost to focus in the morning, whilst giving us a bit more of a drop-off in the evening.

We're also still on guanfacine prolonged release (Intuniv) nightly alongside the lisdexamfetamine, which has honestly been fantastic for us as an AuDHD entity with intense anxiety and RSD. We're currently on 4 mg of this night, but hoping to increase it to 5 mg soon.

Based on our own research and experience, somewhere between 4 and 6 mg should be ideal. 5 or 6 mg will likely be the sweet spot.

Per previous posts we've done, it took a lot of persuasion and self-advocation to convince our UK ADHD healthcare provider to even let us have a split dose of lisdexamfetamine, let alone convincing them to prescribe a combo of complementary meds, since both are unlicensed (aka off-label).

If you want to do the same, we recommend preparing links to articles or resources showing:

• The benefits of a split dose.
• The benefits of a combo of meds.
• The known interactions between such meds, such as via a drugs interaction checker.

You should be prepared to:

• Be advised that they may need to discuss this further, rather than agreeing immediately.
• Be told that they can only make one change to your medication at a time.
• Advise them in detail why you are making this request, from a neurodivergent and mental health / wellbeing point of view.

If you're asking for a combination with guanfacine, you may need to traumadump / mental-health-dump (after asking for consent) in order to persuade them to trial the meds.

It's not easy, and you'll need to be as kind as possible at all times to get them on your side, but it is possible to get what you need if you get an empathetic and caring clinician.

The above might sound manipulative, but this is what self-advocation can look like sometimes. It's a mixture of letting the mask slip a bit to be emotionally honest, employing rhetorical techniques, and being kind and polite at all times.

It's not easy, even if you're good at all of those things.

You can always request permission for an advocate on any calls or appointments with you to help.

#ADHD #AuDHD #lisdexamfetamine #guanfacine #Elvanse #Intuniv #neurodivergent #neurospicy #neurodivergence #neurospiciness #SplitDose #ComboMeds #MentalHealth #anxiety #RSD #RejectionSensitiveDysphoria

We've been on a split dose of lisdexamfetamine (Elvanse) daily for a while now. This has involved 2 x 30 mg doses, typically between 90 to 120 mins apart.

As of today, at our request, we're trialling a split dose where we start with 40 mg, then follow that with 20 mg within the same approximate time window.

The hope is that this will help give us a little bit more of a quicker boost to focus in the morning, whilst giving us a bit more of a drop-off in the evening.

We're also still on guanfacine prolonged release (Intuniv) nightly alongside the lisdexamfetamine, which has honestly been fantastic for us as an AuDHD entity with intense anxiety and RSD. We're currently on 4 mg of this night, but hoping to increase it to 5 mg soon.

Based on our own research and experience, somewhere between 4 and 6 mg should be ideal. 5 or 6 mg will likely be the sweet spot.

Per previous posts we've done, it took a lot of persuasion and self-advocation to convince our UK ADHD healthcare provider to even let us have a split dose of lisdexamfetamine, let alone convincing them to prescribe a combo of complementary meds, since both are unlicensed (aka off-label).

If you want to do the same, we recommend preparing links to articles or resources showing:

• The benefits of a split dose.
• The benefits of a combo of meds.
• The known interactions between such meds, such as via a drugs interaction checker.

You should be prepared to:

• Be advised that they may need to discuss this further, rather than agreeing immediately.
• Be told that they can only make one change to your medication at a time.
• Advise them in detail why you are making this request, from a neurodivergent and mental health / wellbeing point of view.

If you're asking for a combination with guanfacine, you may need to traumadump / mental-health-dump (after asking for consent) in order to persuade them to trial the meds.

It's not easy, and you'll need to be as kind as possible at all times to get them on your side, but it is possible to get what you need if you get an empathetic and caring clinician.

The above might sound manipulative, but this is what self-advocation can look like sometimes. It's a mixture of letting the mask slip a bit to be emotionally honest, employing rhetorical techniques, and being kind and polite at all times.

It's not easy, even if you're good at all of those things.

You can always request permission for an advocate on any calls or appointments with you to help.

#ADHD #AuDHD #lisdexamfetamine #guanfacine #Elvanse #Intuniv #neurodivergent #neurospicy #neurodivergence #neurospiciness #SplitDose #ComboMeds #MentalHealth #anxiety #RSD #RejectionSensitiveDysphoria

We've been on a split dose of lisdexamfetamine (Elvanse) daily for a while now. This has involved 2 x 30 mg doses, typically between 90 to 120 mins apart.

As of today, at our request, we're trialling a split dose where we start with 40 mg, then follow that with 20 mg within the same approximate time window.

The hope is that this will help give us a little bit more of a quicker boost to focus in the morning, whilst giving us a bit more of a drop-off in the evening.

We're also still on guanfacine prolonged release (Intuniv) nightly alongside the lisdexamfetamine, which has honestly been fantastic for us as an AuDHD entity with intense anxiety and RSD. We're currently on 4 mg of this night, but hoping to increase it to 5 mg soon.

Based on our own research and experience, somewhere between 4 and 6 mg should be ideal. 5 or 6 mg will likely be the sweet spot.

Per previous posts we've done, it took a lot of persuasion and self-advocation to convince our UK ADHD healthcare provider to even let us have a split dose of lisdexamfetamine, let alone convincing them to prescribe a combo of complementary meds, since both are unlicensed (aka off-label).

If you want to do the same, we recommend preparing links to articles or resources showing:

• The benefits of a split dose.
• The benefits of a combo of meds.
• The known interactions between such meds, such as via a drugs interaction checker.

You should be prepared to:

• Be advised that they may need to discuss this further, rather than agreeing immediately.
• Be told that they can only make one change to your medication at a time.
• Advise them in detail why you are making this request, from a neurodivergent and mental health / wellbeing point of view.

If you're asking for a combination with guanfacine, you may need to traumadump / mental-health-dump (after asking for consent) in order to persuade them to trial the meds.

It's not easy, and you'll need to be as kind as possible at all times to get them on your side, but it is possible to get what you need if you get an empathetic and caring clinician.

The above might sound manipulative, but this is what self-advocation can look like sometimes. It's a mixture of letting the mask slip a bit to be emotionally honest, employing rhetorical techniques, and being kind and polite at all times.

It's not easy, even if you're good at all of those things.

You can always request permission for an advocate on any calls or appointments with you to help.

#ADHD #AuDHD #lisdexamfetamine #guanfacine #Elvanse #Intuniv #neurodivergent #neurospicy #neurodivergence #neurospiciness #SplitDose #ComboMeds #MentalHealth #anxiety #RSD #RejectionSensitiveDysphoria

We've been on a split dose of lisdexamfetamine (Elvanse) daily for a while now. This has involved 2 x 30 mg doses, typically between 90 to 120 mins apart.

As of today, at our request, we're trialling a split dose where we start with 40 mg, then follow that with 20 mg within the same approximate time window.

The hope is that this will help give us a little bit more of a quicker boost to focus in the morning, whilst giving us a bit more of a drop-off in the evening.

We're also still on guanfacine prolonged release (Intuniv) nightly alongside the lisdexamfetamine, which has honestly been fantastic for us as an AuDHD entity with intense anxiety and RSD. We're currently on 4 mg of this night, but hoping to increase it to 5 mg soon.

Based on our own research and experience, somewhere between 4 and 6 mg should be ideal. 5 or 6 mg will likely be the sweet spot.

Per previous posts we've done, it took a lot of persuasion and self-advocation to convince our UK ADHD healthcare provider to even let us have a split dose of lisdexamfetamine, let alone convincing them to prescribe a combo of complementary meds, since both are unlicensed (aka off-label).

If you want to do the same, we recommend preparing links to articles or resources showing:

• The benefits of a split dose.
• The benefits of a combo of meds.
• The known interactions between such meds, such as via a drugs interaction checker.

You should be prepared to:

• Be advised that they may need to discuss this further, rather than agreeing immediately.
• Be told that they can only make one change to your medication at a time.
• Advise them in detail why you are making this request, from a neurodivergent and mental health / wellbeing point of view.

If you're asking for a combination with guanfacine, you may need to traumadump / mental-health-dump (after asking for consent) in order to persuade them to trial the meds.

It's not easy, and you'll need to be as kind as possible at all times to get them on your side, but it is possible to get what you need if you get an empathetic and caring clinician.

The above might sound manipulative, but this is what self-advocation can look like sometimes. It's a mixture of letting the mask slip a bit to be emotionally honest, employing rhetorical techniques, and being kind and polite at all times.

It's not easy, even if you're good at all of those things.

You can always request permission for an advocate on any calls or appointments with you to help.

#ADHD #AuDHD #lisdexamfetamine #guanfacine #Elvanse #Intuniv #neurodivergent #neurospicy #neurodivergence #neurospiciness #SplitDose #ComboMeds #MentalHealth #anxiety #RSD #RejectionSensitiveDysphoria

We've been on a split dose of lisdexamfetamine (Elvanse) daily for a while now. This has involved 2 x 30 mg doses, typically between 90 to 120 mins apart.

As of today, at our request, we're trialling a split dose where we start with 40 mg, then follow that with 20 mg within the same approximate time window.

The hope is that this will help give us a little bit more of a quicker boost to focus in the morning, whilst giving us a bit more of a drop-off in the evening.

We're also still on guanfacine prolonged release (Intuniv) nightly alongside the lisdexamfetamine, which has honestly been fantastic for us as an AuDHD entity with intense anxiety and RSD. We're currently on 4 mg of this night, but hoping to increase it to 5 mg soon.

Based on our own research and experience, somewhere between 4 and 6 mg should be ideal. 5 or 6 mg will likely be the sweet spot.

Per previous posts we've done, it took a lot of persuasion and self-advocation to convince our UK ADHD healthcare provider to even let us have a split dose of lisdexamfetamine, let alone convincing them to prescribe a combo of complementary meds, since both are unlicensed (aka off-label).

If you want to do the same, we recommend preparing links to articles or resources showing:

• The benefits of a split dose.
• The benefits of a combo of meds.
• The known interactions between such meds, such as via a drugs interaction checker.

You should be prepared to:

• Be advised that they may need to discuss this further, rather than agreeing immediately.
• Be told that they can only make one change to your medication at a time.
• Advise them in detail why you are making this request, from a neurodivergent and mental health / wellbeing point of view.

If you're asking for a combination with guanfacine, you may need to traumadump / mental-health-dump (after asking for consent) in order to persuade them to trial the meds.

It's not easy, and you'll need to be as kind as possible at all times to get them on your side, but it is possible to get what you need if you get an empathetic and caring clinician.

The above might sound manipulative, but this is what self-advocation can look like sometimes. It's a mixture of letting the mask slip a bit to be emotionally honest, employing rhetorical techniques, and being kind and polite at all times.

It's not easy, even if you're good at all of those things.

You can always request permission for an advocate on any calls or appointments with you to help.

#ADHD #AuDHD #lisdexamfetamine #guanfacine #Elvanse #Intuniv #neurodivergent #neurospicy #neurodivergence #neurospiciness #SplitDose #ComboMeds #MentalHealth #anxiety #RSD #RejectionSensitiveDysphoria

We are so very, very tired of everything going wrong 🥺😔

We've had issues ongoing for years, but everything just keeps getting worse and it feels like every week brings a whole new opportunity for things to go wrong.

Here are just a few of the highlights of the last year and a bit:

• Mental health worsened, entering full AuDHD burnout, with increasing anxiety and mood instability.
• We got made redundant from a job we were clinging on to.
  • It also took us about 6 months to finally get any benefits, so we ate through our entire redundancy payment, final salary payment, and some savings.
• Wife broke her ankle very badly, requiring an awful stay in hospital.
  • When she got out, 17 days later, we became her primary carer.
  • We had already been increasingly looking after her, as her health issues had worsened over years, but this dialled it up to 11.
  • We entered carer burnout, on top of the AuDHD one.
  • Even after her ankle fully healed and she'd done months of physicaly therapy, our wife's health and mobility declined due to issues unrelated to the ankle, which has further increased her reliance on us for care, and the NHS is going at a snail's pace.
  • She's pretty much in constant pain, struggling massively, and there's very little we can do to help, despite her being so grateful to us 😔
• We started ADHD meds, and eventually started to feel like we were getting somewhere with a combo of meds, only for them to email us today with a suggested backwards change they want to make that will fuck us over royally, and gave us a mild panic attack.
  • We had to contact them immediately to request an urgent call to discuss, but we now feel like the rug's been pulled out from under us.
• We tried to get actual mental health support through the NHS as far back as May, but due to incompetence, poor administration, and an unwillingness to meet basic accommodations, it's still not happened and is unlikely to happen.
• Our already fractured relationship with our assigned gender clinic broke down to the point where they no longer respond to us.
  • They wouldn't even let us know what an appointment they'd scheduled was about.
  • They wouldn't even respond to the relevant NHS PALS (Patient Advice and Liaison Service) when we asked for their help.
• We finally got offered some voice training assistance through the NHS, but they completely wasted our time and broke us more.
  • Over 3 separate hour-long assessments, including one with their lead speech and language therapist, they decided that they couldn't help us voice train, that the problems we were having were all in our head, and tried to fob us off to a psychologist to overcome our perceived issues!!!
  • When we asked them to support an Individual Funding Request (IFR) for Voice Feminisation Surgery (VFS), they not only refused, but the reasons given were a mixture of misrepresentations and outright untruths.
  • Despite saying that they couldn't help us, their refusal to support an IFR advised that we could always come back to them in 6 months to try again 😑
• We finally progressed enough through the NHS "care pathway" to discuss options for genital reconfiguration surgery (GRS), but -- as we've written in detail here, it went very, very poorly.
  • Had to do 2 very difficult emails to try to work out next steps, if any, to go with our backup option, but it's looking increasing like we're not going to be even able to get that from the NHS, and we cannot afford to get it done privately.
• Trans+ rights and access to healthcare are continuing to be rolled back and further limited, piece by piece, with no hope of that changing in the near future... or even at all.
• Oh, and the senior partner at our NHS GP surgery -- whom we very much trust and who actually cares -- is semi-retiring this year, and they were kind of our last lifeline in the NHS for wading through most of the shit 🙃

NGL: if we didn't have responsibilities and obligations to wife, cattens, and friends, as well as certain others in the community, we'd be seriously planning a homebrew version of Dignitas-level stuff right now.

It no longer feels like we're just treading water.

It feels like we're caught in rapids, desperately clinging to any rocks we can along the way, trying not to drown as the water increasingly fills our lungs.

But it doesn't matter how exhausted we are, how much it hurts, or how much everything sucks: we don't have the freedom to let go.

So instead we're doing everything within our limited power, resources, and capabilities to keep on swimming, staying conscious as we drown, and learn somehow to breath underwater.

If you've read this far, apologies for all of this. We could have said nothing, but we needed to be honest about how bad everything is.

And if per chance some of you are more-technically-savvy, and know what we mean by TOR and Dread, and could perhaps privately offer to share some info over Signal or Matrix regarding backup "supplies" for the ADHD stuff, we'd be much obliged. (We've got the GAHT stuff covered at least, as well as certain other meds. Just struggling with the ADHD stuff, particularly guanfacine / Intuniv.)

#MentalHealth #anxiety #depression #MoodDysregulation #MoodInstability #neurodivergent #neurodivergence #neurospicy #neurospiciness #AuDHD #AuDHDBurnout #burnout #CarerBurnout #NHS #NHSEngland #trans #transgender #NonBinary #enby #TransRightsAreHumanRights #TransRights #LGBTQ+ #LGBTQIA+ #FuckTheUK #HereBeDragons

We are so very, very tired of everything going wrong 🥺😔

We've had issues ongoing for years, but everything just keeps getting worse and it feels like every week brings a whole new opportunity for things to go wrong.

Here are just a few of the highlights of the last year and a bit:

• Mental health worsened, entering full AuDHD burnout, with increasing anxiety and mood instability.
• We got made redundant from a job we were clinging on to.
  • It also took us about 6 months to finally get any benefits, so we ate through our entire redundancy payment, final salary payment, and some savings.
• Wife broke her ankle very badly, requiring an awful stay in hospital.
  • When she got out, 17 days later, we became her primary carer.
  • We had already been increasingly looking after her, as her health issues had worsened over years, but this dialled it up to 11.
  • We entered carer burnout, on top of the AuDHD one.
  • Even after her ankle fully healed and she'd done months of physicaly therapy, our wife's health and mobility declined due to issues unrelated to the ankle, which has further increased her reliance on us for care, and the NHS is going at a snail's pace.
  • She's pretty much in constant pain, struggling massively, and there's very little we can do to help, despite her being so grateful to us 😔
• We started ADHD meds, and eventually started to feel like we were getting somewhere with a combo of meds, only for them to email us today with a suggested backwards change they want to make that will fuck us over royally, and gave us a mild panic attack.
  • We had to contact them immediately to request an urgent call to discuss, but we now feel like the rug's been pulled out from under us.
• We tried to get actual mental health support through the NHS as far back as May, but due to incompetence, poor administration, and an unwillingness to meet basic accommodations, it's still not happened and is unlikely to happen.
• Our already fractured relationship with our assigned gender clinic broke down to the point where they no longer respond to us.
  • They wouldn't even let us know what an appointment they'd scheduled was about.
  • They wouldn't even respond to the relevant NHS PALS (Patient Advice and Liaison Service) when we asked for their help.
• We finally got offered some voice training assistance through the NHS, but they completely wasted our time and broke us more.
  • Over 3 separate hour-long assessments, including one with their lead speech and language therapist, they decided that they couldn't help us voice train, that the problems we were having were all in our head, and tried to fob us off to a psychologist to overcome our perceived issues!!!
  • When we asked them to support an Individual Funding Request (IFR) for Voice Feminisation Surgery (VFS), they not only refused, but the reasons given were a mixture of misrepresentations and outright untruths.
  • Despite saying that they couldn't help us, their refusal to support an IFR advised that we could always come back to them in 6 months to try again 😑
• We finally progressed enough through the NHS "care pathway" to discuss options for genital reconfiguration surgery (GRS), but -- as we've written in detail here, it went very, very poorly.
  • Had to do 2 very difficult emails to try to work out next steps, if any, to go with our backup option, but it's looking increasing like we're not going to be even able to get that from the NHS, and we cannot afford to get it done privately.
• Trans+ rights and access to healthcare are continuing to be rolled back and further limited, piece by piece, with no hope of that changing in the near future... or even at all.
• Oh, and the senior partner at our NHS GP surgery -- whom we very much trust and who actually cares -- is semi-retiring this year, and they were kind of our last lifeline in the NHS for wading through most of the shit 🙃

NGL: if we didn't have responsibilities and obligations to wife, cattens, and friends, as well as certain others in the community, we'd be seriously planning a homebrew version of Dignitas-level stuff right now.

It no longer feels like we're just treading water.

It feels like we're caught in rapids, desperately clinging to any rocks we can along the way, trying not to drown as the water increasingly fills our lungs.

But it doesn't matter how exhausted we are, how much it hurts, or how much everything sucks: we don't have the freedom to let go.

So instead we're doing everything within our limited power, resources, and capabilities to keep on swimming, staying conscious as we drown, and learn somehow to breath underwater.

If you've read this far, apologies for all of this. We could have said nothing, but we needed to be honest about how bad everything is.

And if per chance some of you are more-technically-savvy, and know what we mean by TOR and Dread, and could perhaps privately offer to share some info over Signal or Matrix regarding backup "supplies" for the ADHD stuff, we'd be much obliged. (We've got the GAHT stuff covered at least, as well as certain other meds. Just struggling with the ADHD stuff, particularly guanfacine / Intuniv.)

#MentalHealth #anxiety #depression #MoodDysregulation #MoodInstability #neurodivergent #neurodivergence #neurospicy #neurospiciness #AuDHD #AuDHDBurnout #burnout #CarerBurnout #NHS #NHSEngland #trans #transgender #NonBinary #enby #TransRightsAreHumanRights #TransRights #LGBTQ+ #LGBTQIA+ #FuckTheUK #HereBeDragons

We are so very, very tired of everything going wrong 🥺😔

We've had issues ongoing for years, but everything just keeps getting worse and it feels like every week brings a whole new opportunity for things to go wrong.

Here are just a few of the highlights of the last year and a bit:

• Mental health worsened, entering full AuDHD burnout, with increasing anxiety and mood instability.
• We got made redundant from a job we were clinging on to.
  • It also took us about 6 months to finally get any benefits, so we ate through our entire redundancy payment, final salary payment, and some savings.
• Wife broke her ankle very badly, requiring an awful stay in hospital.
  • When she got out, 17 days later, we became her primary carer.
  • We had already been increasingly looking after her, as her health issues had worsened over years, but this dialled it up to 11.
  • We entered carer burnout, on top of the AuDHD one.
  • Even after her ankle fully healed and she'd done months of physicaly therapy, our wife's health and mobility declined due to issues unrelated to the ankle, which has further increased her reliance on us for care, and the NHS is going at a snail's pace.
  • She's pretty much in constant pain, struggling massively, and there's very little we can do to help, despite her being so grateful to us 😔
• We started ADHD meds, and eventually started to feel like we were getting somewhere with a combo of meds, only for them to email us today with a suggested backwards change they want to make that will fuck us over royally, and gave us a mild panic attack.
  • We had to contact them immediately to request an urgent call to discuss, but we now feel like the rug's been pulled out from under us.
• We tried to get actual mental health support through the NHS as far back as May, but due to incompetence, poor administration, and an unwillingness to meet basic accommodations, it's still not happened and is unlikely to happen.
• Our already fractured relationship with our assigned gender clinic broke down to the point where they no longer respond to us.
  • They wouldn't even let us know what an appointment they'd scheduled was about.
  • They wouldn't even respond to the relevant NHS PALS (Patient Advice and Liaison Service) when we asked for their help.
• We finally got offered some voice training assistance through the NHS, but they completely wasted our time and broke us more.
  • Over 3 separate hour-long assessments, including one with their lead speech and language therapist, they decided that they couldn't help us voice train, that the problems we were having were all in our head, and tried to fob us off to a psychologist to overcome our perceived issues!!!
  • When we asked them to support an Individual Funding Request (IFR) for Voice Feminisation Surgery (VFS), they not only refused, but the reasons given were a mixture of misrepresentations and outright untruths.
  • Despite saying that they couldn't help us, their refusal to support an IFR advised that we could always come back to them in 6 months to try again 😑
• We finally progressed enough through the NHS "care pathway" to discuss options for genital reconfiguration surgery (GRS), but -- as we've written in detail here, it went very, very poorly.
  • Had to do 2 very difficult emails to try to work out next steps, if any, to go with our backup option, but it's looking increasing like we're not going to be even able to get that from the NHS, and we cannot afford to get it done privately.
• Trans+ rights and access to healthcare are continuing to be rolled back and further limited, piece by piece, with no hope of that changing in the near future... or even at all.
• Oh, and the senior partner at our NHS GP surgery -- whom we very much trust and who actually cares -- is semi-retiring this year, and they were kind of our last lifeline in the NHS for wading through most of the shit 🙃

NGL: if we didn't have responsibilities and obligations to wife, cattens, and friends, as well as certain others in the community, we'd be seriously planning a homebrew version of Dignitas-level stuff right now.

It no longer feels like we're just treading water.

It feels like we're caught in rapids, desperately clinging to any rocks we can along the way, trying not to drown as the water increasingly fills our lungs.

But it doesn't matter how exhausted we are, how much it hurts, or how much everything sucks: we don't have the freedom to let go.

So instead we're doing everything within our limited power, resources, and capabilities to keep on swimming, staying conscious as we drown, and learn somehow to breath underwater.

If you've read this far, apologies for all of this. We could have said nothing, but we needed to be honest about how bad everything is.

And if per chance some of you are more-technically-savvy, and know what we mean by TOR and Dread, and could perhaps privately offer to share some info over Signal or Matrix regarding backup "supplies" for the ADHD stuff, we'd be much obliged. (We've got the GAHT stuff covered at least, as well as certain other meds. Just struggling with the ADHD stuff, particularly guanfacine / Intuniv.)

#MentalHealth #anxiety #depression #MoodDysregulation #MoodInstability #neurodivergent #neurodivergence #neurospicy #neurospiciness #AuDHD #AuDHDBurnout #burnout #CarerBurnout #NHS #NHSEngland #trans #transgender #NonBinary #enby #TransRightsAreHumanRights #TransRights #LGBTQ+ #LGBTQIA+ #FuckTheUK #HereBeDragons

We are so very, very tired of everything going wrong 🥺😔

We've had issues ongoing for years, but everything just keeps getting worse and it feels like every week brings a whole new opportunity for things to go wrong.

Here are just a few of the highlights of the last year and a bit:

• Mental health worsened, entering full AuDHD burnout, with increasing anxiety and mood instability.
• We got made redundant from a job we were clinging on to.
  • It also took us about 6 months to finally get any benefits, so we ate through our entire redundancy payment, final salary payment, and some savings.
• Wife broke her ankle very badly, requiring an awful stay in hospital.
  • When she got out, 17 days later, we became her primary carer.
  • We had already been increasingly looking after her, as her health issues had worsened over years, but this dialled it up to 11.
  • We entered carer burnout, on top of the AuDHD one.
  • Even after her ankle fully healed and she'd done months of physicaly therapy, our wife's health and mobility declined due to issues unrelated to the ankle, which has further increased her reliance on us for care, and the NHS is going at a snail's pace.
  • She's pretty much in constant pain, struggling massively, and there's very little we can do to help, despite her being so grateful to us 😔
• We started ADHD meds, and eventually started to feel like we were getting somewhere with a combo of meds, only for them to email us today with a suggested backwards change they want to make that will fuck us over royally, and gave us a mild panic attack.
  • We had to contact them immediately to request an urgent call to discuss, but we now feel like the rug's been pulled out from under us.
• We tried to get actual mental health support through the NHS as far back as May, but due to incompetence, poor administration, and an unwillingness to meet basic accommodations, it's still not happened and is unlikely to happen.
• Our already fractured relationship with our assigned gender clinic broke down to the point where they no longer respond to us.
  • They wouldn't even let us know what an appointment they'd scheduled was about.
  • They wouldn't even respond to the relevant NHS PALS (Patient Advice and Liaison Service) when we asked for their help.
• We finally got offered some voice training assistance through the NHS, but they completely wasted our time and broke us more.
  • Over 3 separate hour-long assessments, including one with their lead speech and language therapist, they decided that they couldn't help us voice train, that the problems we were having were all in our head, and tried to fob us off to a psychologist to overcome our perceived issues!!!
  • When we asked them to support an Individual Funding Request (IFR) for Voice Feminisation Surgery (VFS), they not only refused, but the reasons given were a mixture of misrepresentations and outright untruths.
  • Despite saying that they couldn't help us, their refusal to support an IFR advised that we could always come back to them in 6 months to try again 😑
• We finally progressed enough through the NHS "care pathway" to discuss options for genital reconfiguration surgery (GRS), but -- as we've written in detail here, it went very, very poorly.
  • Had to do 2 very difficult emails to try to work out next steps, if any, to go with our backup option, but it's looking increasing like we're not going to be even able to get that from the NHS, and we cannot afford to get it done privately.
• Trans+ rights and access to healthcare are continuing to be rolled back and further limited, piece by piece, with no hope of that changing in the near future... or even at all.
• Oh, and the senior partner at our NHS GP surgery -- whom we very much trust and who actually cares -- is semi-retiring this year, and they were kind of our last lifeline in the NHS for wading through most of the shit 🙃

NGL: if we didn't have responsibilities and obligations to wife, cattens, and friends, as well as certain others in the community, we'd be seriously planning a homebrew version of Dignitas-level stuff right now.

It no longer feels like we're just treading water.

It feels like we're caught in rapids, desperately clinging to any rocks we can along the way, trying not to drown as the water increasingly fills our lungs.

But it doesn't matter how exhausted we are, how much it hurts, or how much everything sucks: we don't have the freedom to let go.

So instead we're doing everything within our limited power, resources, and capabilities to keep on swimming, staying conscious as we drown, and learn somehow to breath underwater.

If you've read this far, apologies for all of this. We could have said nothing, but we needed to be honest about how bad everything is.

And if per chance some of you are more-technically-savvy, and know what we mean by TOR and Dread, and could perhaps privately offer to share some info over Signal or Matrix regarding backup "supplies" for the ADHD stuff, we'd be much obliged. (We've got the GAHT stuff covered at least, as well as certain other meds. Just struggling with the ADHD stuff, particularly guanfacine / Intuniv.)

#MentalHealth #anxiety #depression #MoodDysregulation #MoodInstability #neurodivergent #neurodivergence #neurospicy #neurospiciness #AuDHD #AuDHDBurnout #burnout #CarerBurnout #NHS #NHSEngland #trans #transgender #NonBinary #enby #TransRightsAreHumanRights #TransRights #LGBTQ+ #LGBTQIA+ #FuckTheUK #HereBeDragons

We are so very, very tired of everything going wrong 🥺😔

We've had issues ongoing for years, but everything just keeps getting worse and it feels like every week brings a whole new opportunity for things to go wrong.

Here are just a few of the highlights of the last year and a bit:

• Mental health worsened, entering full AuDHD burnout, with increasing anxiety and mood instability.
• We got made redundant from a job we were clinging on to.
  • It also took us about 6 months to finally get any benefits, so we ate through our entire redundancy payment, final salary payment, and some savings.
• Wife broke her ankle very badly, requiring an awful stay in hospital.
  • When she got out, 17 days later, we became her primary carer.
  • We had already been increasingly looking after her, as her health issues had worsened over years, but this dialled it up to 11.
  • We entered carer burnout, on top of the AuDHD one.
  • Even after her ankle fully healed and she'd done months of physicaly therapy, our wife's health and mobility declined due to issues unrelated to the ankle, which has further increased her reliance on us for care, and the NHS is going at a snail's pace.
  • She's pretty much in constant pain, struggling massively, and there's very little we can do to help, despite her being so grateful to us 😔
• We started ADHD meds, and eventually started to feel like we were getting somewhere with a combo of meds, only for them to email us today with a suggested backwards change they want to make that will fuck us over royally, and gave us a mild panic attack.
  • We had to contact them immediately to request an urgent call to discuss, but we now feel like the rug's been pulled out from under us.
• We tried to get actual mental health support through the NHS as far back as May, but due to incompetence, poor administration, and an unwillingness to meet basic accommodations, it's still not happened and is unlikely to happen.
• Our already fractured relationship with our assigned gender clinic broke down to the point where they no longer respond to us.
  • They wouldn't even let us know what an appointment they'd scheduled was about.
  • They wouldn't even respond to the relevant NHS PALS (Patient Advice and Liaison Service) when we asked for their help.
• We finally got offered some voice training assistance through the NHS, but they completely wasted our time and broke us more.
  • Over 3 separate hour-long assessments, including one with their lead speech and language therapist, they decided that they couldn't help us voice train, that the problems we were having were all in our head, and tried to fob us off to a psychologist to overcome our perceived issues!!!
  • When we asked them to support an Individual Funding Request (IFR) for Voice Feminisation Surgery (VFS), they not only refused, but the reasons given were a mixture of misrepresentations and outright untruths.
  • Despite saying that they couldn't help us, their refusal to support an IFR advised that we could always come back to them in 6 months to try again 😑
• We finally progressed enough through the NHS "care pathway" to discuss options for genital reconfiguration surgery (GRS), but -- as we've written in detail here, it went very, very poorly.
  • Had to do 2 very difficult emails to try to work out next steps, if any, to go with our backup option, but it's looking increasing like we're not going to be even able to get that from the NHS, and we cannot afford to get it done privately.
• Trans+ rights and access to healthcare are continuing to be rolled back and further limited, piece by piece, with no hope of that changing in the near future... or even at all.
• Oh, and the senior partner at our NHS GP surgery -- whom we very much trust and who actually cares -- is semi-retiring this year, and they were kind of our last lifeline in the NHS for wading through most of the shit 🙃

NGL: if we didn't have responsibilities and obligations to wife, cattens, and friends, as well as certain others in the community, we'd be seriously planning a homebrew version of Dignitas-level stuff right now.

It no longer feels like we're just treading water.

It feels like we're caught in rapids, desperately clinging to any rocks we can along the way, trying not to drown as the water increasingly fills our lungs.

But it doesn't matter how exhausted we are, how much it hurts, or how much everything sucks: we don't have the freedom to let go.

So instead we're doing everything within our limited power, resources, and capabilities to keep on swimming, staying conscious as we drown, and learn somehow to breath underwater.

If you've read this far, apologies for all of this. We could have said nothing, but we needed to be honest about how bad everything is.

And if per chance some of you are more-technically-savvy, and know what we mean by TOR and Dread, and could perhaps privately offer to share some info over Signal or Matrix regarding backup "supplies" for the ADHD stuff, we'd be much obliged. (We've got the GAHT stuff covered at least, as well as certain other meds. Just struggling with the ADHD stuff, particularly guanfacine / Intuniv.)

#MentalHealth #anxiety #depression #MoodDysregulation #MoodInstability #neurodivergent #neurodivergence #neurospicy #neurospiciness #AuDHD #AuDHDBurnout #burnout #CarerBurnout #NHS #NHSEngland #trans #transgender #NonBinary #enby #TransRightsAreHumanRights #TransRights #LGBTQ+ #LGBTQIA+ #FuckTheUK #HereBeDragons

We've been reading more into AuDHD burnout recently, but not enough to write a full post on that. However, in doing so, we've learnt some useful terms that we wanted to share.

Monotropism (monotropic)

• You focus more intensely on one task (or a small number of tasks).
• Allows for deep, intense thinking and entering flow states.
• Busy, unadjusted environments with lots of distractions and being interrupted mid-flow cause stress, anger, and exhaustion.
• Common (but not universal) neurodivergent experience.

Polytropism (polytropic)

• You can switch your focus between multiple tasks at once.
• Ability to switch between multiple tasks with a shallow focus.
• More comfortable in busy, changeable environments.
• Common (but not universal) non-neurodivergent experience.

Alexithymia (alexithymic)

• Sometimes called emotional blindness.
• Difficulty in recognising, expressing, feeling, sourcing, and describing your own emotions.

#neurodivergent #neurodivergence #neurospicy #neurospiciness #ActuallyAutistic #ADHD #AuDHD #monotropism #monotropic #polytropism #polytropic #alexithymia #alexithymic #EmotionalBlindness

We've been reading more into AuDHD burnout recently, but not enough to write a full post on that. However, in doing so, we've learnt some useful terms that we wanted to share.

Monotropism (monotropic)

• You focus more intensely on one task (or a small number of tasks).
• Allows for deep, intense thinking and entering flow states.
• Busy, unadjusted environments with lots of distractions and being interrupted mid-flow cause stress, anger, and exhaustion.
• Common (but not universal) neurodivergent experience.

Polytropism (polytropic)

• You can switch your focus between multiple tasks at once.
• Ability to switch between multiple tasks with a shallow focus.
• More comfortable in busy, changeable environments.
• Common (but not universal) non-neurodivergent experience.

Alexithymia (alexithymic)

• Sometimes called emotional blindness.
• Difficulty in recognising, expressing, feeling, sourcing, and describing your own emotions.

#neurodivergent #neurodivergence #neurospicy #neurospiciness #ActuallyAutistic #ADHD #AuDHD #monotropism #monotropic #polytropism #polytropic #alexithymia #alexithymic #EmotionalBlindness

We've been reading more into AuDHD burnout recently, but not enough to write a full post on that. However, in doing so, we've learnt some useful terms that we wanted to share.

Monotropism (monotropic)

• You focus more intensely on one task (or a small number of tasks).
• Allows for deep, intense thinking and entering flow states.
• Busy, unadjusted environments with lots of distractions and being interrupted mid-flow cause stress, anger, and exhaustion.
• Common (but not universal) neurodivergent experience.

Polytropism (polytropic)

• You can switch your focus between multiple tasks at once.
• Ability to switch between multiple tasks with a shallow focus.
• More comfortable in busy, changeable environments.
• Common (but not universal) non-neurodivergent experience.

Alexithymia (alexithymic)

• Sometimes called emotional blindness.
• Difficulty in recognising, expressing, feeling, sourcing, and describing your own emotions.

#neurodivergent #neurodivergence #neurospicy #neurospiciness #ActuallyAutistic #ADHD #AuDHD #monotropism #monotropic #polytropism #polytropic #alexithymia #alexithymic #EmotionalBlindness

We've been reading more into AuDHD burnout recently, but not enough to write a full post on that. However, in doing so, we've learnt some useful terms that we wanted to share.

Monotropism (monotropic)

• You focus more intensely on one task (or a small number of tasks).
• Allows for deep, intense thinking and entering flow states.
• Busy, unadjusted environments with lots of distractions and being interrupted mid-flow cause stress, anger, and exhaustion.
• Common (but not universal) neurodivergent experience.

Polytropism (polytropic)

• You can switch your focus between multiple tasks at once.
• Ability to switch between multiple tasks with a shallow focus.
• More comfortable in busy, changeable environments.
• Common (but not universal) non-neurodivergent experience.

Alexithymia (alexithymic)

• Sometimes called emotional blindness.
• Difficulty in recognising, expressing, feeling, sourcing, and describing your own emotions.

#neurodivergent #neurodivergence #neurospicy #neurospiciness #ActuallyAutistic #ADHD #AuDHD #monotropism #monotropic #polytropism #polytropic #alexithymia #alexithymic #EmotionalBlindness

We've been reading more into AuDHD burnout recently, but not enough to write a full post on that. However, in doing so, we've learnt some useful terms that we wanted to share.

Monotropism (monotropic)

• You focus more intensely on one task (or a small number of tasks).
• Allows for deep, intense thinking and entering flow states.
• Busy, unadjusted environments with lots of distractions and being interrupted mid-flow cause stress, anger, and exhaustion.
• Common (but not universal) neurodivergent experience.

Polytropism (polytropic)

• You can switch your focus between multiple tasks at once.
• Ability to switch between multiple tasks with a shallow focus.
• More comfortable in busy, changeable environments.
• Common (but not universal) non-neurodivergent experience.

Alexithymia (alexithymic)

• Sometimes called emotional blindness.
• Difficulty in recognising, expressing, feeling, sourcing, and describing your own emotions.

#neurodivergent #neurodivergence #neurospicy #neurospiciness #ActuallyAutistic #ADHD #AuDHD #monotropism #monotropic #polytropism #polytropic #alexithymia #alexithymic #EmotionalBlindness