I’m Twenty

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.

Mouse Does DBT: STOP Skill

The STOP skill is a way to slow down a crisis. When a trigger happens you can picture the stop sign:

S – Stop. Stop everything right now.

T – Take a step back. Get out of the situation or just give yourself a break.

O – Observe. Observe how you feel, what the situation really is and the sensations it’s giving you. What are other people doing and saying?

P – Proceed Mindfully. Think around the scenario from every angle. Before deciding on an action think of how you feel, how others feel and whether the action you want to do next will make things better or worse.

(Please note that Upside Down Chronicles has no training or therapeutic expertise, only experience. This series ‘Mouse Does DBT’ is to support people going through DBT themselves, or for those interested in the therapy. Please contact your GP if you need further support for mental health problems.)  

Mouse Does DBT: “How” Skills

Week Two brought Mouse to the “How” mindfulness skills. Though Mouse wasn’t sure why they were called that, or how to do them…

Non-judgementally

To be non-judgemental is to be factual and not emotional. Using the wise mind you can disarm the judgemental thoughts that we all have about ourselves or others. The disarmament comes from simply recognising when a thought is a judgement, not a fact.  For example:

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The first two mice are non-judgemental. They are stating facts about the state of the cake. However the third mouse is in emotion mind and is using emotion based judgements to define the cake. It’s really hard to be non-judgemental, particularly if you are so hating of yourself that you see the judgemental thoughts as fact. “I’m ugly.” “I’m stupid”. “I’m worthless”. We all have those pesky thoughts. But by realising that they are judgements rather than truths they can be less upsetting.

One mindfully

Doing things one-mindfully is about using the whole of your awareness in a task. One thing at a time, even if the thing you are doing feels insignificant. Notice the tiny details like the backgrounds of film scenes or how many buttons are on a shirt. One mindfully can be practiced using the ‘what’ skills from last week.

Effectively

Effectiveness is about practice. A lot of practice. Practicing these skills again and again until you become more mindful, and thus more effective.

Next in Mouse Does DBT, Distress Tolerance!

(Please note that Upside Down Chronicles has no training or therapeutic expertise, only experience. This series ‘Mouse Does DBT’ is to support people going through DBT themselves, or for those interested in the therapy. Please contact your GP if you need further support for mental health problems.)  

Getting Ready with OrCam

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! 

DBT: First Fortnight Thoughts 

If you’ve been following the start of my ‘Mouse Does DBT’ series you will know that I have recently started an intensive course of Dialectical Behavioural Therapy. So far I am undeniably sceptical. I’m intrigued how and if this therapy will help me.

DBT is practical- which is a good thing. The practical approach means that the skills are useful for any human being on the planet- regardless of if they have illness. I have noticed that DBT is incredibly hard work. Coming out of my first group session I felt like I had been run over by a bus on the M25. Once I had recovered from it, there was stacks of reading and a piece of daily homework to do. After my first one to one I was terrified. I was told that I (like everyone else) will inevitably get things wrong in DBT. Even though I logically know this, it isn’t a comfortable thought for me. I desperately want to get everything right so that I have the best possible chance of recovery.  The therapist also said that she would tell me if she felt that I was not working hard enough- but what if I truly do work my hardest but DBT just doesn’t work for me? 

To mice sitting around a coffee table with a box of tissues on. One of the mice is wearing a lanyard.

The frustrating thing is that I am already aware of many skills that could help me. I can talk breathing exercises and self soothe boxes until I’m blue in the face. Unfortunately dissociation means I am zoned out, cut off and unaware at the exact moment I should be using any of these techniques. To the outside world it looks like a seizure and I am completely unaware of everything around me. 

Apparently with DBT I will one day be able to break down the chain of events that lead to a dissociative episode and eventually catch it before it strikes. At the moment disociation feels like the plug for my consciousness being pulled out suddenly for reasons I’m not always aware of. I can’t even imagine having the time and prior knowledge to slow -let alone stop- an attack. 

At the moment I have serious doubts over whether DBT is for me. There’s no way of knowing for -realistically- a few months at the least. I find it frustrating that even when I am not depressed and feeling pretty good I still have to go to therapy that stresses me out. I am aware that it would be completely stupid to stop going, because I know in my heart of hearts that depression will inevitably come knocking for me again. When that happens I need all the help I can get. I’ve got to keep going, keep trying to understand the skills and keep talking to all the professionals. I always find my own way in the end and in the long term DBT will do me no harm even if (worst case scenario) it does me no good.  

Trying the Orcam for the First Time

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?

 

Mouse Does DBT: ‘What’ Skills

 It was explained to Mouse that mindfulness could be practiced in different ways- some of them are covered here in the ‘What’ skills. 

Observe

A white mouse holds a magnifier to their face 'observe' is written alongside. Copyright upside down Chronicles. Observing is about just noticing as thoughts and feelings come and go. One way to do this is to imagine that your mind is a conveyer-belt and you are passively watching your thoughts trundle by. You are paying attention to the thought as it goes; acknowledging its existence and letting it pass without judgement. You can also observe by noticing the rate of your breathing or by doing a body scan meditation to recognise any physical sensations you may have. You can also observe things external to yourself, like watching people in a cafe or admiring the tiny details in a beautiful view. It’s noting the facts of what is going on in as much detail as possible.

A cartoon image of a conveyer belt. A brown cardboard box is moving along on it. It is labelled 'mouse's thoughts'. Copyright upside down chronicles
Describe

A mouse holds a magnifying glass to the word describe. A question mark above his head. Copyright upside down Chronicles.Describing is all about focus and understanding. In the group session all the mice were each given a chocolate Minstrel. Using the describe skill they tried to find words for the shape, texture, taste, smell and colour of the chocolate. Doing her homework Mouse found that the easiest way to practice this skill was to describe her beauty regime as if she was filming a YouTube tutorial video. She described the products she used, how they felt on her fur, how she applied them and how they change the way she looks. As well as describing actions and objects you can use the same description exercise for thoughts and feelings. Putting words to something as abstract as feelings makes them seem less scary and more controllable.

Participate

A white cartoon mouse poses with one hand on his hip and one in the air in a Saturday night fever dance pose. Music notes around him and the word 'participate'. Copyright upside down Chronicles. Participating is about actively being in the moment. Focusing on the one task you are doing and then doing it with all your might. This could be: singing to the song you are listening to or not allowing yourself to slip into the background during social situations. By taking part in everything you do fully you can stay in the here and now.

What a lot of people don’t understand is that mindfulness is not about clearing your mind. Clearing your mind is actually not very mindful at all. Mindfulness is about acknowledging the moment you are in and accepting things for how they are. These ‘What’ skills are a way to focus and engage with the now. Practicing these skills is hard as you have to try and let the thoughts that interrupt your mindfulness exercise drift past on your brain conveyer belt without letting them pull you completely off task. Mouse’s conveyer belt seems to be being used to transport tonnes of manure around her mind. What skills will need some work.

(Please note that Upside Down Chronicles has no training or therapeutic expertise, only experience. This series ‘Mouse Does DBT’ is to support people going through DBT themselves, or for those interested in the therapy. Please contact your GP if you need further support for mental health problems.)