#audhdburnout — Public Fediverse posts

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 to make a decision between putting out the bins, or stripping and remaking the bed for the first time in over 2 weeks, with an aim of then showering for the first time in about 4 days.

Most of spoonie-ness is very much linked to our neurodivergence, but we're just so cumulatively exhausted from everything that even doing what should be basic household chores has become a constant matter of triage 🥺😔

We're long past the kind of tired where a good night's rest will keep. We're at the point where we'd need weeks of full rest without any obligations or responsibilities to even make a dent in the tiredness.

But we don't have that luxury.

The show must go on.

And we must shower tonight whilst we can.

At least once our heart rate lowers just a little bit more. It's gone back down from 132 to about 88 bpm already at least.

#exhaustion #burnout #AuDHDBurnout #AuDHD #neurodivergent #spoonie

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

Today we learnt that there's an overlap between neurodivergence (especially autism) and migraines.

We've had several instances recently, particularly where we've pushed ourselves too far, where we've experienced what we thought were neurodivergent verbal shutdowns, as we're AuDHD.

We'd experienced such things for at least a couple of decades, even before our ASD diagnosis (still waiting on the ADHD one though). We previously attributed it to normal fatigue. Then we'd describe it as a language centre collapse (or a full batting collapse).

However, it was never clear why painkillers like ibuprofen lysine or naproxen (NSAIDs), paracetamol, or codeine phosphate always helped to both prevent or alleviate symptoms.

Warning signs for us have typically been:

• Increasing pain in middle of forehead or above eyes
• Increased light sensitivity.
  • We've often had to wear our prescription sunglasses to keep working.
• Feeling more fatigued and finding it difficult to focus.
• Finding it harder to understand spoken or written language.
• Slurred speech and difficulty writing.
• Making silly errors and typos.

Once it gets fully going, symptoms include:

• Aphasia.
• Trouble with body coordination.
• Partial or total verbal shutdown.
  • One time Evie couldn't even think coherent sentences, so our headmate Hannah told us what to write to communicate with our wife.

All this time, we'd been thinking this was solely a neurodivergent overload issue. But now we've found out it might actually be some form of migraine, sand this is potentially something we can get meds for (such as gepants).

We intend to book an appointment with our GP about it to investigate further, as it's happening increasingly often, especially since we entered AuDHD burnout.

For further context, headaches are common in our family and our sister has migraines with auras.

#neurodivergent #neurodivergence #ActuallyAutistic #ADHD #AuDHD #VerbalShutdown #migraine #AuDHDBurnout #NeurodivergentBurnout #gepants #NSAID #codeine