In our weekly spot where we natter about mental health and wellbeing, a few words on rediscovering your voice.
Hello and a very warm welcome to our bit on the site where we talk about mental health and wellbeing. It’s a place where we chat about things that may be affecting you, us, or people around us. Not every article we run is going to be of use to everyone, but hopefully across this series, there’s something that’s of use to you.
Ordinarily in our articles, we try to provide solutions as well as problems. We think it’s important to acknowledge though that sometimes we don’t have much in the way of an answer, but we still need to talk about the problems. Because everything isn’t okay, and the clouds are often constantly obscuring the sunshine.
This week, we’re delighted to welcome back Jane to these articles, an absolutely terrific human being who’s had a bit of a time. She remains, of course, brilliant. And the floor, rightly, is hers.
Hello people, long lost Jane here. And boy, have I been lost for the past twelve months since I graced these pages. At first I faced the pandemic with a sense of optimism, watching as people came together as communities of spirit to support one another. It was heartening to see, to see the appreciation for our public services from the NHS, transport providers to binmen. And they deserved it.
The pandemic went on. New strains came, both of the virus and of the human kind. Livelihoods fractured, were lost. Society began to diverge into those who were restless for their return to liberty (however they defined it as an individual), and those unable to contemplate a return to how it was in the before, whether due to illness, economic hardship, the tectonic plates of their lives shifting in ways they couldn’t have contemplated pre-2020.
Hands up, I have skin in the game of embracing protections (not restrictions) to mitigate against disease. I’m sick and it was caused by a virus five years ago. I am not going to recover and I have a list of syndromes as long as my arm. My sympathies extend to anyone who finds themselves swimming against the sharks of Long Covid, because they will find that armchair experts and unfortunately some medical professionals will queue up to tell them to buck up, exercise and think positively.
I’m at the point personally where I’m pissed off with all the flailing I’m doing right now trying to repair my punctured water wings so I don’t drown. I’m in the odd position of having been refused permission for a Covid vaccine until January this year, before my consultants’ decided that I’m now more at risk from the vascular effects of Omicron than Pfizer.
I tried to book my one precious shot but I find myself in a world where those of us with problematic immune systems can’t just rock up to a vaccine hub, and where immunology departments gatekeep access to those shots at what appears to be a whim. Spoiler alert: five years ago they dismissed my illnesses, declared me a hysterical woman and have refused to see me since despite my current consultants having physical evidence of my progressing illnesses. Hell, even the DWP doesn’t think I’ll ever be fit for work. That took some getting my head around.
I’m caught. I have to continue to shield as restrictions are lifted. I’m in a twilight zone of existence (and have been for two years), where my only outings are for medical appointments or to support the person I care for. That’s added an entire dimension of hell. Tried getting a care package for a loved one recently? I have been screamed at by a social worker demanding to know what I’m not providing what we are paying them to do.
I was very lucky in that a local charity stepped in and negotiated on mine and my loved one’s behalf, reminding that council of their duty of care. I was spending nights in A&E at their bedside as an advocate, sleeping on a settee. I was selling my home of fifteen plus years because we couldn’t afford to live there anymore. I ended up collapsing and having a merry trip to a corridor in A&E myself.
Fear. That’s what I’ve been feeling now for so long I’ve forgotten to breathe. I couldn’t write, couldn’t sleep, couldn’t see beyond each task and the inevitable exhaustion it would bring. I ran myself into a brick wall. I knew the crash was coming, but I couldn’t avoid it. This is existing in crisis mode.
I allowed myself some optimism at the start of this year. Booked on a Zoom writing course for an intensive four days, and it was heaven. I got to talk to people. Got to try new things. The words poured out, it was playful, productive, new.
I woke the Monday after the course with good intentions. Until the inevitable crisis hit that morning, thanks to our broken care system striking again. And once sorted, there I am in a black hole of despair. There’s no future for me, no light. I can’t write, can’t volunteer and I feel like a useless carer because I’m so constrained in my actions. I have no horizon.
I’m not going to lie, my consultants’ are now so worried about the effect of two years plus shielding on my mental health. I’ve referred myself to Talking Therapies on their advice and completed the first assessment, which has led to me being referred to a psychologist. The waiting list is six months long, but it’s something I guess. I might get my elusive shot of Pfizer at the same time.
So apologies for absence. I can’t say if this is me finding my voice again, or if it will be overwhelmed with sadness and fury and loneliness again. I hope you are all faring well, but as Simon says so often, it’s okay to not be okay. And it’s bloody hard to accept that.
We’ve missed you, Jane. This column will return next Wednesday…
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