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.

Self Caring When You Are Self Hating

No one ever told me that self hatred would be the thing that stopped me functioning. We talk about depression and anxiety, but their most powerful associate hides in us all. If you have too much of it self hatred is potent. Hating yourself can stop you from getting dressed, eating healthy foods and it can make you punish yourself. The truth is that if you completely loathe who you are it becomes impossible to live in between the lines and complete basic tasks.

The only weapon you can use in combat against self hatred, I’ve been told, is a compassionate approach. It sounds straight forward but if you are a sack full of self deprecation it is really difficult to face the world. By making an effort to self care you can stop yourself deteriorating physically and emotionally.  So you have to make yourself do things that might help- like having a bubble bath or going for a walk outside. You’ve got to do what it takes to make your body feel loved; even if your brain tells you that it isn’t deserved and you feel drained

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Self care can range from maintaining the basics of being alive (keeping yourself hydrated, fed and rested) to more creative methods (like putting on some nice moisturiser or buying yourself a treat). It can also mean doing things that simply need doing for the sake of your wellbeing- like tidying up, making phone calls or booking a GP appointment.

I’ve not mastered self care yet. Some days even doing something I really want to do feels painful. Sometimes I feel like I can’t be in my own skin. It doesn’t feel right treating myself nicely when my skin is crawling and I feel so disgusting. But it is a skill that I, and everyone else, should learn. So right now I’m going to try and look after myself until I feel a bit better. If you are feeling bad right now I challenge you to do the same.

A mouse sitting in a chair with her cup of tea and toenails painted. Copyright.

What things do you do to self care?

 Did Somebody Say DBT?

Recently I’ve been having assessments to see if I’d benefit from a therapy programme that uses DBT and Mindfulness. After many worksheets and conversations I have been put forward for a full programme. This means one skills group and one 1:1 session a week for about a year.

What is DBT?

Dialectical Behaviour Therapy is all about breaking down negative and destructive cycles and creating better ways of coping for yourself. It has foundations in Mindfulness and Cognitive Behavioural Therapy and allows people to develop a more in depth understanding of their negative thought and behaviour cycles. It involves practical skills of how to take action to avoid dangerous behaviour. It is also about helping you to accept your struggles as part of the make up of who you are, but not your whole definition.

The Assessments

What came over very strongly during the assessments was how much hard work DBT involves. It means two sessions, plus my CPN appointment and then homework on top- every week! From what I gather it seems the skills need to be practiced near constantly (even when they aren’t required) in order for them to develop into instinct at times of need. It’s about acknowledging the problems you have, why they may be valid, why they may not, and finding strategies to overcome them.

During the assessments I had to talk about some very difficult things that I find painful. The assessment is important because it ensures that you are suitable and will benefit from the therapy. I think the wonderful Ruby Etc. shows the trouble in seeking help from services perfectly in this diagram. In mental health services you are either ‘too mad’, ‘or not mad enough’. Luckily(?) for me during this assessment it appears I struck the middle ground.

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I’ve wanted for a while to include more help and advice on Upside Down Chronicles. I’d like to be able to share skills and strategies with others and enable people to try techniques for themselves. I know how hard it is to get the help from services, so maybe getting second hand skills from UDC might just help someone. Obviously I’ll be writing as a person experiencing the therapy- not as a therapist or expert myself.  I don’t know when there will be a space for me to start the course, but I am very excited to be finally offered some formal help.

If you want to have a look and a head start, the book the programme uses has been published online for free here.


Is Anybody Out There? The Support Group with One Member.

I hear voices. I don’t say it often, but I do. There are voices and characters who I can see and hear that you can’t. It’s sometimes scary, sometimes comforting but it is always isolating and confusing. I’ve not properly met anyone who experiences hallucinations before. Not knowingly and certainly not for a sit-down chat about how on earth they survive this thing.

When I was referred to the local support group for voice hearers I was intensely nervous. Hovering in the hallway of a dingy community centre that smelt like a mixture of damp and table polish a man approached us. He was in his seventies and walked with a stick. “You’ve got the wrong place love. This is bingo.” Sure enough the main hall appeared to be filled with elderly folk dabbing bingo sheets. After a while of trying locked doors a woman appeared and ushered us into one of the rooms with an air of secrecy. There were models of ships on every side board and the room looked like we had accidentally stumbled onto the set of ‘Dad’s Army’. The woman’s name was *Rosa and she was a CPN. She told me in hushed tones that this week it seemed I was the only attendant of the support group. Trying to swiftly move on but jarring slightly she added: “Voices. What’s going on with those then?”. What a conversation starter.

The next week I was really hoping to meet a voice hearer but after half an hour of waiting it looked increasingly unlikely. After several phone calls to the team’s office it seemed that not even an organiser was going to turn up this week.

For the next two weeks it was just myself and not one, but two organisers. *Dana, was also a nurse with a degree in voice hearing (something that I didn’t know existed). She accompanied Rosa and seemed equally friendly. As they eagerly told me that there had been ‘as many as’ five people in the group in the past; I began to wonder if they experienced hallucinations and delusions themselves. Yet another week passed and in the absence of real life voice hearers they gave me names of ones to research like Eleanor Longden and Ron Coleman. They assured me that I wasn’t alone. This was really hard to believe given that I was the only member to turn up for the support group four weeks running. They encouraged me to go to an official Hearing Voices Network group in the next city to continue my search for real life people.

I was so nervous. This time I was almost guaranteed to meet a voice hearer in the flesh. Nervous anticipation had built up in my chest. This group was reportedly very well attended and had been for several years. I didn’t know what to expect. Do other voice hearers scream and shout like they do in films? As the car stopped outside I prayed there would be no screaming or wailing. When I took a seat in the circle of chairs facing the centre I realised the obvious: the people opposite me were just people and they hear voices. Like me.

The meeting started and I was FULL of questions to ask. “Does anyone else find that distraction technique can be really exhausting? Do other people’s voices get angry if you talk about coping strategies? Am I weird for not wanting to become compassionate with my hallucinations?”. Yes, yes and no.

It felt so good to meet real life people, some managing to work regular jobs and many having been in hospital like I have. Men and women, young and old. I learned that every week the group was facilitated by a rotation of psychologists and they followed rules to ensure the group was a safe place for all. I really enjoyed the group, though, as predicted, the residents of my head were angry that I went. They hate being spoken negatively about.

I hope I can go again, I just need to stop my head talking me out of it. As the lone member of my local support group I feel obliged to keep going. 1:1 care, let alone 2:1 care, is hard to come by in the NHS and as they are funded until December I may as well soak up the support. Plus if someone else does show up, at least I will be there!

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Oh-See-Dee Irony… (a series of unfortunate paradoxes)

Through scrubbing my skin my hands become infected.

I was scrubbing at my hands in case they were infected.

I’m too scared to eat in case it makes me ill.

Then not eating makes me ill too.

I use hand gel to kill bacteria.

The gel cracks my skin and it’s infection prone.

I know my night meds make me feel better.

Yet when I take them I panic in case they kill me.

When the thing you use to stop freaking out gives you cause to freak out more; where do you turn?

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original image © UDC

And to think people think it is about being neat…

Please note: I am safe and okay. Just struggling a bit at the moment. I’m keen to keep the authenticity in this blog and after writing I decided to publish this in my ‘recovery notes’ area. Good news… crisis services (and services in general) are a lot better where I live now!

Moving Community Mental Health Team In Pursuit of Help

Moving across borders within the NHS is somewhat like going on a pilgrimage for treatment. Before you go you are promised that things are brighter on the other side: more resources, more funding and more staff. My voyage -from an area which didn’t have a pot to put pessimism in as far as mental health services are concerned- was tough. The new team didn’t pick my case up for over a month. The team I had moved from, clearly glad to see the back of me, didn’t send any notes over at all. They probably burnt them all in a bonfire to celebrate my departure. Frustratingly this means I haven’t received the findings from the psychological assessment which I waited six months to complete. Three hours of shaking and crying and no one seems to have bothered writing it up. Ho hum.

One thing I have discovered about moving is that community teams like to do their own thing. They trust their psychologists and their psychiatrists, so even if you come brandishing a 100 page assessment they will likely still want to conduct their own. I’m in a bigger team now, so thankfully the waiting times are shorter. I’ve also, for the first time since leaving CAMHS nearly a year ago, been granted a community psychiatric nurse- something that a staffing crisis caused short supply of in my original county.

So I have a community psychiatric nurse, or CPN. A CPN’s job is to work with you towards recovery or towards getting some form of therapy.  They know about medications and, hopefully, all the symptoms you experience. They are generally very useful people to have on your side.

When… Let’s call her *Sue… Turned up she had no knowledge of my background. No transfer notes and no discharge summaries- she didn’t even know that I had been out of children’s services and inpatient for six months. Nevertheless I was very glad to see her, with visits every fortnight and her specialism in mental health rather than social work she is the first mental health professional I’ve had regular appointments with since inpatient.

Being in a bigger NHS trust certainly has it’s benefits as there are more support groups and, though still not many, a lot more resources. Coming out of the first meeting with Sue I had a psychiatry and psychology referral- something which took an age to get in my old trust. Over the last few weeks I have been trying to get to know her as my CPN and tentatively hoping that the support won’t fall to pieces beneath me- a process I am too familiar with.

Obviously it is a drastic decision, one that is pretty hard to research, but if you are in a rural area and a smaller trust it might be worth looking into moving to a bigger area. You are playing with fire as if the area is too big and not split into separate teams the service might be swamped with high demand. It’s also worth remembering that you can ask for a referral to a suitable consultant anywhere in the country through your GP. If you live in or near a city I have found that they tend to have better resources with and without the involvement of NHS mental health services. Some have excellent services a like crisis cafes and support groups. Our NHS mental health resources are a postcode lottery, it needs to change.

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Silence is Broken

The silence is broken. You probably hadn’t notice that there was a silence there to break…

So I broke it myself.

I’ve been in a bit of a blogging rut recently; I have so many ideas yet putting them into chronological (or even just logical) order has been near impossible. I appear to have a mental blogging backlog. If you read my most recent post you will know that the last few months have brought big changes for me. I needed a bit of time away from the blogosphere/twittersphere to process everything that has gone on for myself before writing for others.

The up-shot is: everything has turned out great.

I’m ill but I’m happy, and yes those two concepts can coincide. Actually I’ve not been this happy in a long time.

I’m settled, I’m fine, I’m in very capable hands with my foster family and I’m trying my best at everything that comes my way.

More updates to follow.

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I even represented UDC at AHRC Commons!

P.S – I am really peeved that England is leaving the EU!! 😦