Another Year in Survival Mode

The past year has continued to be difficult. My primary goal continues to be getting through each day without thinking too far beyond that. I’m still struggling to see a future for myself or find real joy in anything. Most days, it feels like I’m existing for other people rather than for myself. I thought I’d try to process some of what has been going on.

I’ve had support from several different mental health services, which I’m grateful for. Most notably, I worked with a wellbeing practitioner who was genuinely one of the kindest people I’ve ever met. She remembered the smallest details, spoke with empathy, and never made me feel rushed or judged, even when I struggled to focus or went off on tangents. She tried to help me across multiple areas of my life, including referring me to adult social care. I was really upset to hear she had now left the service; a huge loss for them but a gain for whoever she works with next.

One of the most helpful things she supported me with was creating a ‘sensory den’ at home. I live in a busy, noisy house, which isn’t ideal for me, so I’ve taken over a corner of the shed. It’s now filled with things that help me recover precious spoons: a weighted blanket, a sleeping bag, fidgets, puzzles, calming scents, and some building bricks to keep my hands occupied. She also encouraged me to use part of the service’s personal budget to get some noise-cancelling headphones; something I felt I didn’t deserve or was taking from those in greater need, but she gently challenged that thinking. It has made a real difference. I finally have somewhere safe to retreat to, and even somewhere to take phone calls without hiding in a cupboard.

Through the same service, I had regular appointments with a new psychiatrist. He seemed to understand me, adjusted my medication cocktail, and pushed for electroconvulsive therapy. I was hesitant at first, but he explained things clearly and gave me hope that it might actually help. I had to regularly attend the local psychiatric hospital a few times for aripiprazole monitoring, but the side effects of this medication far outweighed the benefits, so I changed to lamotrigine. Unfortunately, this psychiatrist also left the service. His replacement couldn’t have been more different. Within ten minutes of meeting me, he decided I didn’t need further support, took ECT off the table and pushed for discharge. I left feeling completely hopeless, dismissed and misunderstood. It affected me deeply for weeks, and his letter to my GP didn’t reflect my experience of the appointment at all. Being misrepresented like that feels like an injustice I don’t know how to cope with.

I was also referred for counselling with an autism-specific service. My counsellor is fantastic. We’ve built a good rapport, and she’s been really supportive. She’s had to apply for extended funding, as the standard twelve sessions barely scratch the surface. I find it frustrating that support is always time-limited. It feels like you’re constantly starting over, unless you can afford private care.

After a long delay (caused by my GP), I finally started treatment with the eating disorder service. They initially identified complex needs, including possible ARFID (Avoidant/Restrictive Food Intake Disorder), and seemed unsure whether they could help one issue without making another issue worse. I thought I’d be left on my own again, but my wellbeing practitioner stepped in and advocated for me when I couldn’t. That led to an extended assessment and eventually ongoing support on the ‘OSFED’ (Other Specified Feeding or Eating Disorder) pathway.

The work has been difficult. I’ve gained weight as part of treatment, which I’m really struggling to deal with, and that feels like I’m undoing past progress in feeling more body-confident. But I’m trying to trust the process. There are small signs of improvement like more balance and slightly more control, but setbacks still regularly happen. One step forward, two steps back. My clinician is pleased with my progress, which helps.

I also tried an online autism wellbeing group, recommended by the wellbeing practitioner. It’s two hours long each week, and honestly, I don’t enjoy it. The content isn’t new to me, and I lose concentration after about twenty minutes. I don’t feel able to use my camera or microphone due to lack of self-confidence and privacy, so it ends up feeling like watching a long PowerPoint presentation rather than being part of a group of like-minded people. I contribute occasionally with text chat, but I feel that disrupts the flow of everyone else’s conversation. At least I can say I gave it a go.

The adult social care referral was a terrible experience. Despite a detailed application, they repeatedly ignored my needs; calling without warning, different people asking the same questions, and expecting complicated answers on the spot. There was no communication or continuity between them. In the end, it became so distressing that I asked them to stop contacting me altogether, even though I still need their support. It was left that I could continue in the future, but some months have passed now and I’m not sure if that offer is still available.

I’ve been trying to build small routines. Nothing major, just manageable structure. For example, on Tuesdays, I go out for a coffee and people-watch. On Wednesdays, I watch 5 episodes of Brookside. I try to wake up at 5am every day and get in bed at about 8pm. I don’t know how much it helps, but it feels like a start.

Loneliness is still a huge issue due to withdrawing socially. I was encouraged to attend a local group to try and make some friends and reconnect with society, so I (reluctantly) tried an art session. Everyone was kind, and I think I did well socially, but the people didn’t feel like the right fit for me. By the end of the two hours, I knew I wouldn’t be returning the following week.

Despite thriving in isolation, I’ve felt lonely for a long time. I’ve neglected friendships due to my health and other aggravating factors. As friendships are a two-way thing, I think it’s fair to say my friends have somewhat neglected our friendship as a result of my failings, which I had previously put down to their own struggles, but now I’m questioning this. I spend a lot of time overthinking friendships. Replaying conversations, questioning whether I’ve said the wrong thing, or whether people are judging me negatively. I even question whether over-explaining my partner’s frequent absence ends up sounding like excuses and lies. It makes reaching out feel risky, like I’m bothering people rather than checking-in with them. Perhaps if I’d opened up to my friends all these years, or took my mask off, they’d understand my circumstances better and things would have been different. I love them dearly and would hate to lose them due to poor health. Maybe I’m overthinking it, but the paranoia and fear is always there.

I’m still struggling with self-harm, in multiple forms. It’s less frequent than it was this time last year, and sometimes I can go weeks without it, but the urge always builds again. I’ve tried replacing it with safer alternatives, but nothing offers the same instant release. It’s something I’m still fighting, but I’m not even sure if I want to stop.

My family’s health has also been a cause for worry. My dad has recently been diagnosed with Ménière’s disease, mouth cancer and a serious abdominal aortic aneurysm. At one point, we were told the aneurysm could rupture and kill him at any moment, which was terrifying. Thankfully, it now seems less urgent, and surgery is planned, albeit with risks. It’s still frightening, but we’re hoping for the best. The aneurysm is hereditary, so I’ll need to be checked too. I thought perhaps his mouth cancer had spread to his lungs, as he’s had a lingering cough for some time, but the scans indicate it’s (thankfully) superficial at this stage.

Craig is also still struggling, which can be difficult for me to help with when I’m also struggling. Managing appointments, medication, treatment and admin has become overwhelming for him, and he’s started giving up. He suddenly stopped taking his mental health medication, which wasn’t fun for either of us. He thinks he’s fine, but he’s not. Naturally, I appoint myself as the person who tries to hold him together, but I don’t always have the mental capacity to be the support he needs. Dealing with his resultant bad moods and attitude can really hurt, even though it’s explainable and I empathise.

Blue and Finn continue to be a source of joy. Craig and I both constantly catastrophise over their health as we’re terrified of losing them, but they bring so much love into our lives.

I’ve been continuing to limit how much I engage with social media, the news and politics. The anger it brings isn’t worth it when I feel powerless to change anything.

Although I’ve had a lot of support this year, much of it is now coming to an end; long before I feel ready. The idea is that I should now manage on my own, using tools I’ve learned. But the reality is that when things go wrong, I still spiral. It feels like a cycle I can’t quite break, because I’ve been in this exact situation too many times before.

I’ve written this from my sensory den, wrapped in a sleeping bag with cinnamon in the air and ’80s music playing. It’s as peaceful as things get.

Until next time.