Holding It In, Letting It Out

Another few months have passed, and I still can’t bring myself to burden the people I love with the details of my life. So, shouting into the void it is.

As I’ve mentioned before, my mental health tends to cycle every few months. I’ll go through a period where everything feels bleak, and I don’t want to be alive; getting through a single day takes everything I have. Then comes the period where things feel slightly lighter (though still far from good), and I’m able to function a little more, even with that underlying darkness still there.

In conversations with professionals, we’ve come to understand this as a gradual build-up of autistic burnout, followed by a crash, and then a slow recovery before the whole process begins again. It isn’t bipolar disorder, as I don’t experience mania, although my medication cocktail is similar to what might be prescribed for it.

After dealing with this for so many years, I’ve become quite adept at recognising the patterns, particularly when I’m heading towards a crash. Unfortunately, the world we live in doesn’t allow me to prevent this cycle altogether; instead, I must find ways to navigate it and make it as manageable as possible.

My dad seems to have come out the other side of his recent health issues. He hasn’t had a Ménière’s attack in months, possibly due to reduced stress following his retirement. His mouth cancer surgery was successful, and he’s now almost fully recovered, though he’ll need speech therapy to help relearn certain sounds. He finds this frustrating and a bit embarrassing, which is difficult to watch. Encouragingly, we’ve been told the tissue removed had clear margins, so there’s no concern about the cancer spreading.

While he was recovering from the surgery (and trying to avoid rupturing his aneurysm), I was able to help him with a few garden projects, including installing a new garden gate and garage doors. It turned into valuable bonding time, especially given the uncertainty of the future.

His abdominal aortic aneurysm surgery was the most difficult part, naturally. On the morning of the operation, we said (what felt like) our final goodbyes, knowing there was a significant risk he might not survive. It was incredibly emotional. He chose to go to the hospital alone, and we saw him off in a taxi, which felt so wrong.

The surgery itself was long and complicated, particularly as there was a smaller second aneurysm to be dealt with during the procedure. He was expected out of the operating theatre by 5pm, but it was after 9pm before he was taken to recovery, which meant we couldn’t visit him that evening as planned. We later learned just how serious it had been; the aneurysm was dangerously large and could have ruptured at any moment. It really does feel like they repaired it just in time, and I’m incredibly grateful to the surgical team. I’m also grateful that the routine scan was done, given his family history, as we may have never known the danger he was in.

The next day, my mum and I went to visit him in the high dependency unit (HDU). I was expecting to see him looking frail and on life support. Instead, he looked remarkably well, which was a huge relief. After a few days, he was moved to a ward and later into a private room due to an infection risk.

Strangely, after such a major surgery, the thing that affected him most was the inability to sleep. It became an ongoing torture throughout his stay. We hoped the private room might help with this, but if anything, it made things worse; there was less mental stimulation with just a white wall to stare at, making the long nights feel even longer.

I visited once a day, sometimes twice. I was disappointed with the standard of care he received. I champion the NHS and understand they’re under immense pressure, but there were repeated instances of carelessness and a general sense that some staff were doing the bare minimum required of them. Two serious incidents in HDU were caused by nursing negligence, one of which nearly cost him his life. What matters most is that he came through it all and is now recovering at home.

I’m still working my way through eating disorder therapy, although I’ve been told I only have two sessions left. That worries me, because things feel significantly worse than when I started, and I’m nowhere near ready to lose that support. I’m following the advice I’ve been given and trying to trust the process, but I feel completely out of control; my binges are becoming more frequent, which I suspect is largely tied to my low mood.

I’m not supposed to weigh myself as part of recovery, but not having that reference point is tormenting. The notches on my belt buckle or my watch just aren’t accurate enough. I feel a strong urge to start weighing myself again, in the hope it triggers some motivation. I’m convinced I’ve regained all of the weight I worked so hard to lose over the past couple of years. I’ve slipped back into hating what I see in the mirror, feeling uncomfortable in my own body. A lot of my energy is going into resisting old habits such as starving myself. It’s frustrating remembering how much more confident (and therefore happy) I felt when I was underweight.

The difficulty is that this therapy isn’t really about weight at all. The aim is not to give a shit about it and reach a place where it doesn’t impact how you feel about yourself. That’s the part I struggle with most. We’ve explored how the body dysmorphia began and developed, but understanding this hasn’t exactly fixed it.

I was offered something called ‘mirror therapy’, which apparently involves standing in front of a mirror for an extended period and identifying things you like about yourself. The idea of this felt overwhelming, and I know I wouldn’t have been able to tolerate it for long.

Lately, I’ve been feeling particularly low about everything. In my most recent session, things went off track because I was struggling to find a reason to live for myself, rather than for other people. The therapist set aside their planned work for the session, and it became an impromptu counselling session instead, with a focus on how my mood affects my relationship with food and body image.

My ‘homework’ before the next session is to think of things that might give me a sense of achievement, as the therapist identified this as an issue for me. I’m not driven by goals or ambitions, perhaps because I am just existing, so the people I care about don’t have to grieve for me. For a long time, I’ve only been able to recognise small things as achievements. Things like getting out of bed or going to the shop. It always felt a bit patronising when I was told that these were huge achievements and should be recognised as such. They’re not enough, though. So far, the only ideas I’ve come up with are things like completing jigsaws, building flatpack furniture, or solving problems on my computer. None of those feel particularly meaningful or likely to make a real difference. I’ll keep brainstorming.

Day to day, I feel like I’m back to running on a much lower ‘spoon’ allowance, which means I have to ration my energy far more carefully just to get through. I keep finding myself falling asleep during the day, or even in the middle of doing things. This is despite sleeping reasonably well at night. On the days when I wake up feeling like shit, I end up going back to bed instead of pushing through like I usually try to. The energy just isn’t there.

I can’t remember the last time I went for one of my long power walks, which hasn’t helped with the weight gain either. The lack of motivation is constant, and everything feels like effort. Even the things I used to enjoy.

I suppose it’s all connected. For months, it has felt like I’ve been holding my breath; the health scares, the hospital visits, supporting my dad, my mum, Craig, and trying to manage everyone’s expectations. All whilst suppressing my own issues. Now it’s as if I’ve finally exhaled, and I’m left needing time to recover before I can take the next breath.

I’m still trying to build routines and putting into practice everything I’ve been taught. Finding ways to manage the darker thoughts and surf the urges. In the past, I probably would have given up by now, especially when it feels like it isn’t working or making things worse. This time, I’m trying to stick with it. I owe myself that much. To trust the process and give it a proper chance, however hard that feels.

I don’t know where it will lead, but for now, I’m still here, still trying. That has to count for something.