It’s okay not to be okay

Things have eased greatly since I last wrote. I no longer feel like I am sewing a parachute in mid-air: the threat of imminent eviction has lifted, my hands and arms are (mostly) working, and a painful legal dispute has a resolution in sight.

I have a dozen brightly coloured post-it notes, each marking a project, idea, or opportunity to pursue, ready to practice Jim Benson’s “personal kanban” (“Visualise your work. Limit your work in progress”).

The sun has been shining, the birds are singing and, while I continue to wrestle with the overwhelming urge to sleep for the majority of the time I’m supposed to be awake, life feels a little more manageable. Not perfect, but more manageable.

The last few weeks/months/years have all taken their toll, though. It’s Mental Health Awareness Week in the UK and now that my most recent and acute challenges seem to be stabilising, I’m able to see the effect that experiencing so much chronic, acute, and cumulative stress has had on me - in particular, on my mental health. Some things I’ve been reminded of:

• Factor it in When I think about pacing my energies, resting, and making allowances for my disabling chronic illness, I tend to focus on how my physical pain, exhaustion, and limited energy might prevent me from doing things. However, these symptoms don’t occur in a vacuum, as anyone who has experienced them can attest.

  Very often an increase in symptoms or tiredness is accompanied by a lowering of mood. I have developed an ability to compartmentalise my challenges - I wouldn’t have been able to submit my dissertation last month if I hadn’t - but it takes its own toll eventually, too.

  Factoring in the awareness that my mental health has its own peaks and troughs, in the same way that my physical health does, allows me to account for extra time when planning projects - and helps me to intentionally prioritise my mental health when planning future self-care.

• Avoidance is normal - and a signal Some of the things I’ve struggled with the most over the last few months have been opening envelopes, opening/replying to emails, and engaging with social media notifications.

  (If you’re reading this and have wondered why you’ve not heard from me .. hey, hello, and my apologies.)

  I’ve felt so lacking in resilience to take further bad news, and so overwhelmed by the emotional aspect of reading and replying, that I’ve felt paralysed by guilt and shame.

  My recent experiences have revealed to me how fully-resourced I need to be to accomplish these seemingly ordinary tasks (which is a common challenge for people with neurodiversity). I know that I’m not alone in this: I’ve discussed it with two friends in the last couple of weeks, who shared their own guilt and shame over being unable to open or reply to messages, too.

  When I struggle with these tasks, I now know that it’s a big reminder to increase my self-care massively - simply because they take me way more energy to do in the first place.

• Friendship matters To overcome some of my most time-critical challenges, I have drawn on the practical support of some kind and wonderful people. I had an “envelope opening” Zoom call with a couple of friends who turned it into a fun game-show, two others who opened emails for me when I just couldn’t face doing so myself, and another who represented me on my behalf.

  Sometimes we just can’t get through blocks on our own, and that’s okay. As Ram Dass put it, “We’re all walking each other home”. I’m yet to crack my aversion to social media, but this support with letters and emails has really helped me through my most depleted period.

• Sometimes we just need to acknowledge - and then work with - our limitations I have auto-replies on some of my email accounts which explain that there may be a delay in replying due to other commitments and limited energy. While I can’t say when I’m able to write back, at least I can mitigate another’s anxiety about whether I’ve received their message in the first place.

Cultivating better mental health starts with cultivating a better awareness of it - and it’s seldom a “one and done”.

Whether your struggles are heavy and long-term, or whether they’re new and sharply painful; whether you’re battling things on all fronts or facing one thing that feels all-encompassing; whether you’re fully aware of what you’re going through or whether you’re too much in the thick of it to gasp for air, let alone to feel it fully; I see you, and you are not the only one who feels the way you do.

If you’re reading this you too, like me, have survived 100% of your worst days so far.

And that’s one hell of an accomplishment.

Photo by Pedro Siqueira: https://www.pexels.com/photo/shallow-focus-photo-of-red-bird-2072091/