I’ve mentioned a few times that I managed to get Covid-19 thanks to the school-based germs of our daughter. My immune system is low, so the effects of Covid have been amplified. For several weeks I’ve struggled to eat, drink, talk, move, and at one point my breathing became a big problem too.
Doctors found an infection in my chest and fluid started pooling. I’m operating with about 1/3 of my lung capacity, so when I lie down at night the fluid pools to the side and there’s less space for oxygen.
Just over a week ago, this cocophony of problems caused me to collapse in the bathroom and my partner made the decision to call an ambulance. I went against everyones desperate requests for me to attend hospital, because I’m certain that psychologically I’d spiral out of control.
This is NOT a decision I’d agree with for someone else, and I’d never recommend it, but being Agoraphobic, feeling shameful in my wheelchair and being alone in the hospital where we lost our daughter would not have been healthy for me. Nonetheless, it was a difficult decision to make and it’s why I’ve been unable to talk on here and social media as much as I’d like to.
I was forced to agree that I’d rest for as long as it takes.
I’m still resting.
Having nothing but time to think because I couldn’t concentrate on the usual distractions, I realised that this project is starting to amplify the loneliness I experience in real life. I’d hoped for the opposite. I’d hoped that writing this blog, being brave enough grow my amateur skills publicly and talking about my lived experience of acute mental illness might mean I get some noise in the silence and guide me to a life where I feel less useless.
Whilst doing as I was told earlier this week my brain was replaying facts about my existence that I don’t like. I realised there isn’t someone to call or text to talk to about what Covid has caused, nor to discuss my growing fears over my health. There isn’t someone to invite round to have a coffee with and talk about random celebrity news or social gossip. There isn’t someone who can distract me from all this worry with their own life events, whatever they are.
But I know that’s all part of the reason why I’ve written as much as I have and tried to show my creativity as a solution for others. It really does fill the void, until you can’t do it any more.
I’ve also considered how much I’d appreciate some guidance or advice on what a digital artist needs to do to grow, or what a writer can do to climb the ladder, even what people need in a reliable and trustworthy mental health advocate. But my introductory emails and DMs on Twitter are ignored 99% of the time. I guess there’s no value in something that’s free or potentially spam, so it’s hard to be seen.
Family, friends, professional value, praise, good health, guidance and respect are all things I miss, and the burden I am on my remaining family of 2, being a mum who’s never present and a partner who’s always depressed, seems to be all I’m left with. I wanted to make my daughter proud one day. I’ve said it many times. I use my pain-free time to do these projects so that whatever happens, one day she’ll know I didn’t just give up when it felt like that’s what the world wanted from me.
I’ve failed to be anything of value, so what’s left?
This is my internal narrative and as those comments get louder in my head, so does my self-hatred. This is a common pattern for someone with BPD, and as it gets worse, the reality of my changing mood and reactions gets harder for me to see.
I remember my confidence as a healthy woman was top notch. At one point ten years ago I was working 3 jobs, including 2 full night shifts a week, running 8km every day and still absolutely in love with life. Alexis Jordan has a line in one of her songs that I held close around that time. I was about to get divorced and leave an old life behind. In the uncertainty of it all I still believed better things were possible. These few lyrics represented my ultimate goal…
“Through strength I found love, in time I found myself in happiness with you.”.
When I met my partner and we fell in love I was a very different person to what faces me in the mirror today. Happier, thinner, intelligent, professional, loved, more confident, healthier, sociable, competitive, friendly, busy, excited, in demand, jolly, unafraid, protective and balanced.
When I lost the ability to be the things I adored I changed direction and pointed towards this. I’d hoped to become accomplished, interesting, useful and maybe respected, but I don’t feel any of those things either. Having too much time to realise this has left me even more unbalanced. The voice in my head isn’t friendly, often forcing me to ponder the point of it all.
Yes, I’m back to wondering what my own value is.
Luckily my partner realised my mood is changing, and we’ve had to engage additional support.
Although I’m now lots of unwelcome things, the only thing I won’t be is a hypocrite. I often use the phrase ‘do as I say not as I do’, for once I’m following my own instructions. Frankly, I don’t have a lot of choice.
I can’t stress enough the importance of 2 things.
- Support networks – With life in the UK more difficult than I’ve known for 41 years, it’s understandable that worry, anxiety, depression and the symptoms of many complex mental illnesses will rise. Having a support network of people you trust, and who can trust you in turn, can be critical in helping you engage with appropriate professional help and stick to your recovery plan. Thinking now about the special people in your life that you know you can rely on and even talking to them in advance, will only help you feel safer if things do go south. It’s important to be prepared.
However, if you’re like me and a bit more reclusive and for whatever reason you don’t have a robust social or family circle in place, there are support groups availible on the phone, via webchat, on text, in what’s app and through email. For more ideas visit the Get Support page on this site. You might feel you are, but you most definitely are NOT alone. - Self care – Whatever it is that makes you feel happier and calmer, make time to do it regularly. Regardless of how busy you are, how important that email you’re waiting for is or how wrinkly you get in the bathwater, enjoy that calm. For ideas on creative distractions visit my Stress Hacks and Creative Coping Strategies pages.
This time to think has made me realise I need to work out how I keep this train going and find people who can help me do it right, which takes time and bravery. With my self confidence low it’s difficult to work out how I engage help, but I’ve made the decision to contact some charities through the Disability Arts website to see if they can offer guidance.
Anything is worth a try.
Hopefully after healing, finding my creative direction and finishing the boxes of medication I’ve been prescribed, I’ll stop hating the person in the mirror.
Thanks for reading 💜
The picture
Not everything in the last few weeks has been negative.
We normally eat at the table, but because I’m stuck in or on the bed 24/7 our daughter has been eating here with me from time to time. While enjoying some veggie fingers and hash browns we watched an episode of Bluey where Bingo spent a dream in space. I ADORED this episode and so did our daughter.
I took a still from the cartoon and adapted it slightly to make this. It took me a while because it was often painful to draw, but the result is probably my favourite attempt at the cartoon so far.
It’s also the only time I’ve enjoyed quiet at home for a while.
Look after yourselves, enjoy a cartoon or two and rest up.
Creative Steph 