Drowning in Appointments

Lately, my life has revolved around appointments. They’ve piled up so much that some weeks feel like I exist solely for them, each demanding energy I don’t really have. For someone who gets overwhelmed so easily, it’s exhausting trying to keep track of what’s happening and what has been said in each encounter. Now and then, I’ll get a rare week with nothing booked in, and it feels like a holiday. But the constant stop-start nature of my diary makes it hard to move forward with anything else. My life feels stuck in limbo, endlessly interrupted by appointments that are meant to help, but often leave me drained.

Earlier this year, I was paired with a new wellbeing practitioner. She’s been wonderful: attentive, empathetic, and patient, no matter how many monotonous tangents I go off on. She remembers details, listens without judgment, and genuinely seems to care. She tried to set me up with adult social care to help me in daily life, but they were making me so ill I had to step back from it. Even though I don’t feel much better than when we started, I like to think I’d be in a worse place without the wellbeing practitioner’s support. Sadly, her work with me is coming to an end soon. While I wish her input could continue indefinitely, the reality of limited budgets makes that impossible.

Through the same service which allocated me a wellbeing practitioner, I was also referred to a new psychiatrist. I hadn’t seen one since 2021, so it was long overdue. To my relief, he seemed to understand me far more than the four I’d seen previously. He kept my main medication the same but added aripiprazole—an antipsychotic—which set off a whole chain of titration, physical assessments and hospital prescriptions. While the nurse was lovely, the process itself was stressful, and I quickly became familiar with the psychiatric hospital. It may be useful knowledge one day if I end up as an inpatient, though that’s hardly a comforting thought.

I’ve also started counselling again, this time through an autism-specific service called Respect for All. Thankfully, the counsellor I’ve been matched with is easy to talk to, though the timing is less than ideal. Our sessions are by phone at 7:30 pm, which, firstly, means waiting restlessly all day for the appointment, and secondly, means hiding in the shed for privacy and then heading straight to bed afterwards. Not exactly a recipe for winding down.

A few months back, I had a major flare-up of health anxiety. My usual calf pain escalated, combined with strange palpitations and the reminder of my chronically high platelet count from recent blood tests. I became convinced I had a blood clot. No amount of reasoning with myself eased the panic, despite knowing there was a 99% chance it was just health anxiety, so I booked an emergency GP appointment to work on that remaining 1%. Unfortunately, the GP wasn’t friendly, but at least he ruled out my immediate fears. He also referred me to haematology, where JAK2 testing is now underway to rule out thrombocythemia. The uncertainty lingers, though.

Meanwhile, my disordered eating has been at its worst. I swing between brief periods of control—heavily restricting calories—and days where I binge like a drug addict. The eating disorder service felt they couldn’t help because of the flip-flopping, worried about making either pattern worse. They suggested ARFID might be part of the picture, but it was only after my wellbeing practitioner and psychiatrist intervened that they agreed to offer an extended assessment, as it is causing a severe negative impact on all aspects of my life. For now, I’ve been experimenting with calorie counting, which gives me some structure but also reminds me how ridiculously high in calories everything is.

Sleep hasn’t offered much relief either. Since starting aripiprazole, insomnia has become the norm. I’ll doze off, only to wake two hours later, unable to get back to sleep. Side effects have piled up: blurred vision, restlessness, slurred speech, sudden drowsiness, and forgetfulness—all without much benefit. It’s clear this medication isn’t right for me. My psychiatrist’s next suggestion is lamotrigine, and possibly electro-convulsive therapy further down the line. Neither feels reassuring, but I’ll take things one step at a time.

On top of my own busy schedule, Craig has had a string of appointments and difficulties, too. One of the appointments I’ve been urging him to attend for years, and I hope it makes a positive difference for him. Others are more worrying, and I fear the weight of possible diagnoses. He isn’t in a good place physically or mentally, so I’ve been putting his needs before mine, doing what I can to support him.

I’ve always been someone who struggles to function when even a single appointment is looming in my day. To have so many packed into recent months has been overwhelming. It feels like I’ve been holding my breath, waiting for a chance to exhale. For autistic people, especially, the constant disruption of a cluttered diary can feel unbearable, and I’m no exception. I long for a stretch of clear days with nothing hanging over me, just time to rest and recover without the next commitment already waiting. But until that arrives, I’ll keep pushing through, one appointment at a time.