Endings and beginnings come and go whether we are open to them or not. Though you feel like you don’t want the end to come sometimes a new beginning can bring things you could never imagine.
There’s been a lot of endings and beginnings since I blogged last.
The placement where I was living didn’t go as planned and once again I found myself in a situation where my life was in the hands of social services. It was a horrible, sickening, few months of not knowing where I was going to end up and not really belonging anywhere. It felt familiar to when I couldn’t leave hospital because I had nowhere to go and so it brought up a lot of difficult feelings. I got a new social worker who literally pieced my life back together and then I was able to say goodbye to her. A happy goodbye, because she found me somewhere great to live and be. A home.
My psychiatric nurse of two years retired. That was a sad ending because she has been a massive support to me during some very turbulent times. She was a fantastic nurse and I really landed on my feet to be assigned to such a caring and committed professional. I’ve also met my new psychiatric nurse, which so far looks like another positive new beginning.
Among the new beginnings is a massive one on the horizon. I have an offer to study Occupational Therapy at the university I’ve desperately wanted to go to for years. It’s another new beginning on the horizon and it’s scary but I’m ready to grasp it. It’s time.
I don’t know where I’m going with this site at the moment. I feel very emotionally attached to Upside Down Chronicles still, but I don’t feel like sharing my mind online in times of turmoil is much use to anyone. During a few of the more recent dark times I have thought about writing it all out here, but then stopped because I don’t want to overshare. Instead I think I will blog about specific things that have happened in my journey, but with the clarity and abilities of hindsight. I think that there is great strength in personal narrative, but at the same time I don’t want readers to worry about me, in the way that I have often felt about other people on social media. So maybe a more reflective approach is the way I will go, hoping to raise awareness but also share practical things that can help people with mental health conditions cope. The message I love receiving every time is the one which says thank you for making me feel less alone. If I can make one person feel less alone with their mental illness using this blog then I’m a happy blogger. In my absence from here I have been doing a lot of mouse drawings on instagram @UpsideDownChronicles, which I think I will integrate into this blog as a lot of them are mental health related. But you, whoever you are reading this, are massively important in where Upside Down Chronicles goes. If you could answer the poll below I would be really grateful, you can choose multiple options then press vote.
Sometimes Life thinks it is lighting a Yankee Candle… but really it is causing a major explosion. Oops!
The gang on my Facebook page said they’d like to see more of my original illustrations on both UDC and Facebook. So here we go.
This one is a bit symbolic of my life at the moment, things start okay or nice and then… boom. If there is anything that could go wrong it does. Hence the blog silence. BUT things are getting sorted slowly, which means when I’m up to writing a full blog post I’ll have lots to tell.
Thanks for reading 🐭x
I’ve had four A level result days.
2014 was the first. Having been incredibly ill all year I knew I had failed. Everyone told me I hadn’t, but I knew I had. I hadn’t been eating properly or sleeping for weeks and had fallen asleep for part of two of my exams. The day before the results, my psychiatrist told me down the phone that I was having a major depressive episode and needed an ambulance immediately.
2015 was the results day where I had no results. I had been in psychiatric units for the entire year and was reflecting on the year before’s experience. I wrote a blog about it ‘FACED BUG – Some Results Day Rationale’, and ultimately realised that no exam result was worth being suicidal for.
In 2016 I worked hard on my AS levels all year and, despite still acclimatising to the outside world, I did well in English. I also got a very unwelcome ‘U’ in French. Obviously, being me, I internalised it and declared to myself that I was stupid. It was a couple of weeks later when my paper was sent back that my tutor realised that the awarding body had managed to lose the majority of my A3, neon yellow, exam paper. Instead of noticing that things were amiss the board merrily awarded me their lowest mark, a U. After a complaint I got a C grade based on the one questions they did manage to keep hold of.
This year I was incredibly nervous. I didn’t know what was going to happen. This year was different in that I had been in touch with my dream university and had asked about applying for 2018. I had accesss problems in one of my exams, which as always I worried would affect my grade. I arrived at college clinging to my Dad and softly hyperventilating. We went to the desk and got the envelope. The exam officer, a complete star, appeared at my side. “I want to be here when you open this!” She said.
‘Oh boy’ I thought. ‘She’s making sure she’s here to pick up the pieces. It must be bad.’
She smiled and opened the envelope. I got an A* in English and a C in a very hard French paper. I’d even got an A in my French AS resit. I couldn’t believe it. It’s the first year that anyone from college has been there when my results were opened, it’s the first time people smiled and the first time my Dad cried with happiness. It’s the first time I’ve been in disbelief because the news is good and the first time the conversations about ‘next steps’ have been positive.
I guess what I’m trying to say is that once I decided that my mental health was worth more than exams I was actually able to do better academically for it. That first year I stayed up all night studying for weeks on end. I was ill but wouldn’t stop. It did me no favours at all. Okay, my friends from high school are well into their degrees by now, but I now realise that I do things in my own time and in my own way. I’ve got my own beat and my own drum and I definitely dance to it. Your mental health is so important. Years of being mentally unwell can’t be retaken and they are so much more regrettable than a disappointing brown paper envelope. Look after yourself and take your time, good things do come to those who wait.
If you ask people who have been diagnosed with OCD what the biggest misconception about their illness is, one thing comes up over and over.
We’ve all heard it: “I’m so OCD” people joke as they emerge from their wardrobe having spent a happy hour sorting it by season. They believe OCD refers to a quirk of character, a term for their perfectionism, even a synonym for high productivity. In reality OCD is very different and when the monster rears its ugly head compulsions made up of tiny and meaningless actions can consume hours. It’s far from efficient because, after all, tapping a desk or moving an object from side to side again and again in search of the ‘right’ feeling doesn’t cross things off your to-do list.
I think this video by The Mighty is perfect to show the difference between clinical OCD and perfectionism. The film shows two young women’s days side to side. If someone you know is a repeated offender of joking that they are ‘so OCD’ consider giving this a share and maybe they will learn something new.
I’d heard such good things about DBT and the wide array of issues it can help with. But once I began the therapy things very quickly went downhill for me. My voices were so loud in the group, defiant they wouldn’t be silenced, that it was difficult to concentrate, and I had so many questions that didn’t feel welcome. I felt like I was expected to just absorb the information given and make it work. The skills of Dialectical Behavioural Therapy seemed to contradict each other and some sounded like they were straight out of ‘The Little Book of Calm’.
One of the skills ‘Radical acceptance’ is about just accepting the past. I wondered why anyone is in therapy at all if radical acceptance is the ideal cure. Society constantly asks us to radically accept whatever has happened to us. But I don’t know anyone who has found the societal kicking to ‘just get on with it’ healing. I became more and more sceptical of some of the skills, no matter how open minded I tried to be. It made me realise that in order to be more mindful I needed to understand myself and get properly assessed. Until this happens I can’t put everything aside and ‘just be mindful’ as DBT asked me to.
Another of the barriers for me was that my mood does not tend to swing violently on a day to day basis. I could go weeks or months where I didn’t have a real life depression to practice skills with. I practiced anyway, several hours on each homework and two visits to the clinic every week. However when there was a real life situation where a skill could be used, I found that dissociation meant I couldn’t apply any techniques. I found it increasingly more and more humiliating going to one to one sessions and hearing about all the things I should have done, when at the time I wasn’t aware of being in my body; let alone the whereabouts of my DBT worksheets. My OCD and general perfectionism made me incredibly anxious about the whole process. I tried bloody hard, but I couldn’t be the perfect DBT student. This alone made me despise myself even more than I did already. My mind had set me up with that goal, but unfortunately that goal became a big part of my DBT process failing.
DBT works for a lot of people and this is only my opinion. But the more I went to DBT the more I felt like I was in a sitcom about therapy. Everything from the clinking of the chimes at the beginning and end of a mindfulness activity and even some of the skills would have made great comedy material. One of the more notably bizarre skills was half smile and willing hands in which you look slightly sinister and wait for serenity to come upon you. My uncertainty as to whether DBT was the correct path for me seemed to frustrate my 1:1 therapist greatly. She said that by trying to get me involved she had been utilising the ‘foot in door’ technique and now she would move on and use the ‘door in face’ technique by suggesting I move on. I said that sounded like mind games. She said: “that’s DBT”.
In the end I realised that the amount of hours I was putting into something that was rendering me totally miserable was stopping me from being able to do things that did actually make me feel better. Energy is a precious commodity and after about two months and many hours I couldn’t sacrifice anymore of it. I did meet some lovely people in the DBT group who I admire immensely and wish the best of luck in their therapy. In the meantime I am having more assessments to work out what to do next. No therapy works well for everyone, we are all individuals. I was absolutely terrified that me leaving the therapy would mean I would not be offered any help again. This luckily did not happen and everyone working with me respects my choice and my right to receive treatment. The ‘Mouse Does DBT’ category will now become ‘Mouse Tries’, a series of blogs about different techniques that may help people with mental health problems.
Today I turn twenty. Most people will celebrate their 21st birthday as the major milestone, but I’m partying today. Well when I say ‘Partying’… I’m drinking tea and feeling grateful. Partying.
To put it bluntly: I’m here. My teenage years are over and I made it. I got through. I did it.
This may sound over dramatic, but there were times where it really was a close call. I was so ill that I was trying to end my life. It’s hard to look back, but I am proud of myself now, really bloomin’ proud. Ten year old me wouldn’t have been able to dream up all the things I am doing at the moment. I hit rock bottom, yes, but the only way to go from there is up. I live in fear that the lowest of low will return one day and I won’t be so lucky, but hitting the bottom of the pit turned out to be a catalyst for change.
I feel such relief. Relief that I wasn’t allowed to just die. I am so grateful to those who brushed the dirt from my face, inspired me and believed my life would change. They dreamed of what my life could be like when I couldn’t dream it for myself. They encouraged me no matter how many times I screamed at them to give up. I can’t thank these people enough. You saved me.
I don’t think anyone could call me mentally well, but it’s not terminal. My illnesses aren’t going to kill me anymore- I can think, do things and meet people.
The day I am editing this (may the 12th) is international nursing day. So from the bottom of my heart thank you to those nurses who gave friendliness along with professionalism. For the hours I’ve had them by my side and for the hours I’ve cried on their shoulders. I’ve met nurses who are unshakable: They can handle any combination of crises and chaos. They are rushed off their feet on busy wards but still pop in to check that you are okay. The best nurses I know give more than just medication, they give genuine love and care to patients.
I am still putting OrCam to the test! This week I had great fun working out how it can help me with tasks in my day to day life- like getting ready. The OrCam can tell the difference between two face cleansers in near identical packaging within seconds. It can also tell me the name and shade of the foundation that I need to pick up at the shop. It feels so good to be able to do this kind of task independently again. Fully sighted people take for granted that they can identify anything with minimal effort.
I was amazed that the OrCam could read the tiny information stickers at the ends of my lipsticks. From colours to finishes- It’s the little things that make me the happiest!
Sometimes with the OrCam you have to refocus the camera and point again before it gets the text’s wording exactly right. In the case of the lipsticks it was easy to tell when I needed to retry because the OrCam would read numbers (presumably from elsewhere on the sticker) or beep.
OrCam are hoping to bring colour recognition in on the next software update, this will be the icing on the cake for me! This device allows me to be curious and to explore the things that I wouldn’t feel were important enough to ask someone else about. When you’ve got stacks of brown envelopes you need to go through, queries like: “what is this nude lipstick shade called?” Slip into the ether of unimportance.
This video is short and sweet but I wanted to show how versatile the device is and how, albeit with some perseverance, it can read even really tiny text! More OrCam findings to come!
I have been following the developments of OrCam since 2013 when I first contacted Dr Yonatan Wexler wanting to know more about this peculiar gadget he was envisaging. Dr Wexler kindly kept in touch with me over the years as OrCam developed and grew. Last week I was loaned an OrCam MyEye to wear for a month, in order to test it out and review it from the point of view of a young blind person. It is a four year dream to get my hands on this technology and I can’t wait to share my findings with you.
OrCam MyEye is a tiny camera that is positioned on the top right edge of any pair of glasses. A black wire runs behind your ear and to a box which contains the device computer. It is light and can then be clipped onto your belt or clothes. When turned on the OrCam MyEye can recognise pre-saved objects/faces and read text to the user via a bone conducting ear piece. The device is discreet and excels in recognising text- both on screens and paper.
Below is a video of myself and OrCam trainer Judy as she introduces me to the device for the first time. As you can see I was sceptical at first as to whether it would read my favourite poetry book accurately. A week on and I am still amazed at what OrCam is able to do. I am so excited to be able to share this ground breaking new technology and to provide a realistic and grounded review of the product. From what I’ve experienced so far, I firmly believe OrCam could be instrumental in the lives of many visually impaired people around the world. I will be putting the device through its paces in the life of a young person with sight loss. In the UK there are already over 600 users of OrCam and worldwide there are thousands. So, are we looking at the beginnings of artificial vision?
I found out about ‘Living with Me and My OCD’ years ago. I was intrigued and excited to hear of a film exclusively about OCD and, even more excitingly, one that is directed and produced by someone who actually has the condition. I knew straight away after being in contact with Claire the producer that she would make sure that this film would give the best insight into OCD as possible. Recently the film came out and there was a screening event in Claire’s hometown of Sheffield. The film is now on OCD-UK’s youtube channel and has been praised by OCD Action.
The film includes interviews with people who suffer from OCD. It puts right the public perception that OCD is about ‘just being tidy’. It is shocking and eye opening in all the best ways, and truly shows the many forms this disorder can take. I’d really like to praise and thank all the contributors, as well as Claire of course, for being so honest in their accounts and allowing them to be shared. Some of the testimonies brought tears to my eyes because I could relate so strongly. If you have OCD this film will show you that you are not alone. If you don’t have OCD- this film will open your eyes and make you grateful you don’t. I seriously believe that this film is an epic step in the right direction for OCD Awareness and understanding.