Where I've been instead of here

Hi everyone

You might have noticed I’ve been pretty inactive for a long, long loooong time. I wanted to give you an update on what’s been going on my end. At the end of 2018, I finally got the good news I was waiting for. I had a meeting with the head of the complex needs service and we discussed that I had been trying to access DBT for some time; with no luck. Until recently that therapy had not been available in my area. She told me that DBT was now being provided on the NHS where I live and she said she would be referring me. She said she felt it was the right treatment for me and it would really help finally take back control of my life. 

I will write in more detail about this in a longer post about the process I’ve had to go through. But just to say I have had to fight tooth and nail to get this life-changing recommended treatment and I think that’s appalling. I am someone who is often able to pull together the motivation to get up and argue about a decision in my care. But, I often worry about others who aren’t able to do this, or haven't got a good support network behind them. After I threatened a complaint for poor service and a failure to follow the NICE guidelines on BPD treatment, they finally allowed me into the DBT group. I still don’t know when this will be starting, but I should receive a letter before the end of December. Fingers crossed I don’t have to make any more fuss, because I’m exhausted. 

Thank you for being patient with me whilst I get myself recovered from all this stress. My friends, family and supporters have all been excellent too. 

I’m hoping to get back to work on my blog posts at the end of next week. Also I’m looking to write about the political situation here in the UK (with the upcoming general election) and how it affects people with disabilities. 

More stuff coming soon.   

Out of Darkness. Xx

Sensory Overload and Coping with Change.

Some of you may have heard of the term “sensory overload” before. For those that haven't, it’s when one or more of your senses experiences over stimulation. This comes from the environment around you eg. loud noises, bright light or colours and crowding. It’s very distressing and can cause the person experiencing it to become agitated, anxious or even to go into a mental meltdown. Anyone can experience sensory overload under the right conditions. The most commonly known group of people who are vulnerable to this are those on the autistic spectrum, but did you know there are other disorders that can also be affected? People with ADHD, anxiety and certain personality disorders are known to struggle with this issue. I’m going to be explaining my experience of it as someone with Borderline Personality Disorder. 

As we do every Tuesday, me and my partner had gone to do our food shopping. We usually go late in the evening, but for some reason we had come earlier in the day. My local Lidl is the place we visit consistently as they always have the things we like to buy and it’s relatively cheap. I enjoy the way they lay things out and have my own little route I take, which is the same every week. As we were walking down the first aisle I found myself feeling a bit lost and felt my throat tightening. There were a lot more people than usual, but I could cope with this level of anxiety. By the time we got to the top of the aisle though, I felt positively sick. Taking a moment to look around I realised the entire layout had been changed. My items were not in the places I would usually find them and large double height freezers had been installed. The lights on the freezers were extremely bright, the noise level was high and I was having to navigate around people with a large trolley. When we got to the freezer section I realised that I was heading for a meltdown. In all honesty I felt stupid. How could it be that someone as functional as I was, was almost crying over a change in layout? My partner was supporting me and I tried to laugh it off and hold back my tears. My head was pounding and my ears were ringing. I could even feel myself beginning to disassociate; a natural coping mechanism I have. 

Luckily I managed to make it through my shopping trip without a major meltdown, which I’ve experienced in the past. The one that always sticks out in my mind was when I had a full on breakdown in a shopping centre, where I got furious with my partner and ran out of the shop (Yikes). When I was younger and less aware of what was happening to me, I didn’t even realise what was causing my meltdowns. I haven’t had too many in the last few years as I’ve managed to improve my emotional resilience. I’d been feeling particularly fragile during that week so it’s understandable I didn’t cope as well as usual. 

Many people with non-neurotypical tendencies like BPD and Autism rely heavily on routine and structure to cope with day to day tasks. Even small changes could throw us into a blind panic. But I have found ways to manage my stress and try and avoid overstimulation whilst in public. 

• Avoid busy times - We tend to go shopping at around 7pm. You can’t always help it, but it’ll save you a lot of stress if you can plan your week differently. I also do all my christmas present shopping early as I can’t deal with the garish colours, bright lights and screaming children that the holidays bring.
• Take a friend/carer - Essential for me as I can’t manage the whole shop on my own. If you’re going to be going to parties or events where you might get sensory overload, it always helps to have a supportive person you can trust with you. 
• Make a list/plan your route - I find this really helps to keep me focussed, so I don’t panic when I have to make decisions about what to buy or where I’m going.
• Remember to breathe - I always forget to do this when I start to experience sensory overload. I hold my breath as I’m gritting my teeth and it makes me feel even worse. Practicing mindfulness when you’re not stressed helps you to use it when you are. 
• Regularly get out of your comfort zone - I know you don’t want to because it feels like hell, but getting out and doing the things that make you a little anxious will help you to be more resilient. Every so often I pop to a smaller shop to get a few bits on my own. It’s stressful, but it builds confidence.   

5 Things Healthcare Professionals Do That Are Harmful.

I’ve recently been going through a very rough and troubling time. Since October last year I’ve been dipping in and out of crises. As of two weeks ago, after relapsing quite badly, I have been under the Crisis Resolution Team (CRT). I’ve had many dealings with similar teams and most of them have been unpleasant. There are members of these that have been kind and helpful, but I’m afraid to say it’s a rarity. Most of them are simply lacking training with regards to people with personality disorders. Which isn’t their fault, government cuts over the last few years have left the NHS in a pitiful state. Occasionally though you also get the other type of HCP. Unsympathetic, practically eye rolling and needlessly cruel. During my many years with this diagnosis, I have seen the way we are treated differently and often more harshly, because of the misconceptions many professionals hold. So I’d like to reach out to those HCPs who are overworked and underpaid. Let me explain some of the things you’re doing you might not even notice are causing harm.

Emotional Blackmail - Yes, it really does happen. A lot more than you’d think. I came to my meeting with the CRT in the hopes that someone would be able to offer me support. I was terrified of what I might do to myself and what I had already done. It takes a lot of courage to walk into a meeting and explain that you’ve relapsed with your self harming behaviours. I don’t want to tell you because I want your attention. I want to tell you because I’m scared of what I might do. I’m telling you I need help. Now if you were seeing a HCP you would expect them to be compassionate. My confession was met with utter disdain and even anger. The CRT member said to me 

“If you can’t keep yourself safe and have to go into hospital, then you won’t be getting your therapy!”. 

She went on to tell me that I had the capacity to make my own choices and I knew what I was doing. I felt physically sick. Did she really think I was doing this on purpose? I tried to explain how I lack control when the impulse takes over, but she wasn’t listening. She’d already made up her mind about me. 

Guilt Tripping - Very similar to the emotional blackmail. I’ve known too many professionals who fall into the trap of doing this to their patients out of desperation or frustration. My personal opinion is this happens when the HCP lacks the skills and training, to treat the patient successfully. Which explains why it often occurs with patients with personality disorders or complex needs. After telling me I wouldn’t get my therapy if I self harmed, she resorted to saying

“you should feel lucky you’re getting treatment and that you have a partner/ family/ friends.”

I’ve been one of those people waiting 5 years for the recommended treatment. I have jumped through hoop after hoop, and I have fought tooth and nail to get it. I am not lucky. Also saying to someone their pain is invalid because they have friends and family is ridiculous. BPD is an issue with the way I process emotions and how I perceive the world around me. Whether I have a partner or not won’t change this, and the idea that it will is naive and ignorant. 

Closed Listening - I come to you to try and explain my current situation and the struggle I’m facing. Your job is to listen to me and assess me. It’s clear and straightforward, but for some reason it seems it’s a skill that doesn’t get put to use. The problem is I start to tell you what I’m experiencing and instead of waiting for me to finish you assume you already know. Because of this you’ll never truly understand what is actually happening. At times it makes me want to scream “you’re not actually listening to what I’m saying.” But if I did that you’d put in my notes I was violent or aggressive, so I stay silent. Closed listening leads to people blocking out HCPs and therefore hinders the recovery process. 

Underestimating Me - There is nothing more irritating than when you work up the courage to call the CRT and you get this in response to suicidal thoughts. 

“Go for a walk, then you’ll feel better.” 

I actually hate this. It is something that people have been telling me since I was 17. No, it doesn’t help me. I have tried. Did you think I hadn’t thought of this? Such a simple solution to the problem. Having lived with BPD all of my adult life, I’ve had to become quite resourceful to survive. I practice mindfulness, yoga, various forms of creative writing and have become relatively good at self soothing. By the time I reach crisis point I have tried everything I can think of. So please don’t get annoyed when I dismiss your suggestions. I’ve already tried them. I understand it isn’t meant to be patronising, but that’s how it comes across. If you take the time to get to know me better and read my notes before our meeting, you’ll see that I’m a very capable adult and then maybe you’ll treat me as such. Also if you know what helps me, you’ll be able to make better suggestions. 

Being Dismissive Because I’m a “PD” - Uh oh… it’s this abbreviation again. It gets thrown around mental health teams constantly. I know from my time as a student nurse and in my current role; so let’s not pretend. Most of us living with a personality disorder know the constant headache of being categorised and stereotyped. Patients are often spoken about as being dramatic attention seekers, who need to be treated with tough love or simply discharged from services. I’ve been in situations where this judgement has been made by HCPs before they’ve even met the individual. You may think it’s harmless as long as you don’t say these things in front of us, but the attitude carries like a stench on the wind. People with BPD can read a negative facial expression from a mile off, and believe me it shows.

I apologise if this has seemed like an endless rant or an attack on HCPs. After all, I am one myself. But, I think it’s really important to recognise our weaknesses and therefore improve. Helping people with complex needs is a tough job and in a service where you’re barely getting time for a drink or even to go to the toilet, I understand. You don’t have enough resources to help everyone and it causes you to feel emotionally fatigued. I’m hoping however that you’ll see we can be helped and kindness does work. I’ve had HCPs that really have made a difference to my life. I want you to see that it’s worth it in the end. So please stick with us while we figure out life in this crazy world.

And ... We're Done.

Hey to anyone reading this. 

Boy am I glad that’s over! I started writing about my experience of therapy so long ago. Sorry it took me a ridiculous amount of time to finish it. As you may have guessed from previous posts, this really isn’t my year. Actually in terms of personal growth, it's been fantastic. I’ve been on a journey of discovery, but that has meant that my blog has stagnated a bit. I was struggling to find the motivation to write about my therapy experiences. I wanted to do it justice, however there was just so much material. I even cut what you’re seeing down a lot. 

The good news is it’s complete and you can go back to expecting more varied content in shorter easier to read pieces. I don’t think I’ll be embarking on another series of posts quite that long. Once you start something you do have to finish it though. 

Thanks for your support and patience. 

Out of Darkness. Xx

Psychotherapy Experience - Part Five - The End

Trigger Warning - suicidal ideation and actions

After finishing my therapy in December I thought everything would be fine. I was extremely optimistic and only a little bit scared that I would be going it on my own. I was on the list to get DBT, but I knew it would probably take some time; 6 months at least. After 2-3 years of psychotherapy I assumed that my life was going to be better from now on. 

In October time I had taken a pretty large overdose and ended up hospitalised for two days. Thinking about it, it was the biggest overdose I had ever taken. I lost two days of my life in a state of delirium. But, since the end of the therapy, I thought that things were looking up. I looked at that relapse as the final kick; my illness trying one last time to take me out before I got rid of it for good. Coming through that felt like such an achievement. This lead to a lot of the positivity I was experiencing. 

I returned to work quickly. Eager to put it all behind me and move on with my life. Looking back on it, I was frightened they would notice something was wrong with me. I’ve always struggled with putting too much stock in the job I do. I treat it like an identity, since I struggle with who I am most days. The thought of my colleagues thinking I was weak made my stomach churn with anxiety. 

It wasn’t long before I started running into difficulties again. I hadn’t given myself time to heal emotionally and so I had returned to work still in a crisis. I went through each day dreading the next one. I tried to take annual leave here and there to give myself some time, but I was just fire fighting. By the time Christmas had come and gone, I was at my limit. I remember waking up one morning before work in early January and just thinking, “I wish I could just die.” The stress of actually pulling all the bits of my scattered self together and holding it there for 13.5 hours, was just too much. 

I remember feeling as if I had nothing else to give. I felt emotionally destroyed and so weak. I was sitting on the sofa worrying about work, when it hit me. It didn’t matter if I was fit to do my job right now or not if I was dead in the next few days. I was angry at myself for always putting work and other people before my own life. Feeling like I might do something stupid, I went to see my GP who sent me straight to A&E. After a few hours sitting and waiting, I was seen by the crisis team, who in turn admitted me to the mental health assessment unit. It had been so long since I had been there and honestly it felt terrible. I knew at least I would be safer there than at home. I won’t go into much more detail of the events that happened in the hospital, because I’m sure it’s already been discussed in a previous post. I was off work for a long time. Like 3 months, all because I had seen the warning signs and completely ignored them. I felt so bad about all of it. I kept wondering what work would think and if I should go back soon. I kept having to shake myself out of the frenzy and remind myself I was taking this time to heal. For me.  

I learned a lot  from my breakdown and my time off. Things I probably wouldn’t have been able to learn if I hadn’t been through the therapy. I learned not to push my emotions down or ignore my body. I learned to be kinder to myself, at least once in a while. I also learned that the other person inside of me, the vulnerable girl, she was not my enemy. And, she certainly wasn’t something I had to get rid off. Being able to cope as a functioning adult meant embracing her and taking care of myself. Appearing emotional doesn’t mean that people will think you’re weak. And if they do, why should you care about what they think? 

Now I’m waiting for my DBT. I’m optimistic that it’s going to help me cope better and hopefully learn more about who I am. I've had to wait a long time for it, but now it’s only about a month away. My journey in intensive psychotherapy certainly had its ups and downs. It’s helped me address past issues, solve problems and learn to experience the emotions I struggle with. It’s prepared me to move forward with my life in the knowledge that I deserve to be happy. I don’t regret a single second of any of it and would definitely recommend it to people struggling with BPD and other trauma based illnesses. Without that therapy group I don’t think I would have made it this far. So thank you to everyone who made it possible.

Psychotherapy Experience - Part Four

Another thing no one tells you about therapy is often the big changes happen afterwards. I felt my group sessions were too laid back and too loosely structured for me to benefit. I went away thinking that all it had done was bring up painful memories and cause me to struggle even more. 

It must have been a week or so after the last session that I could sense something wasn’t right with me. I was starting to become aware of a place inside of me I didn’t know existed. Now, hear me out because this sounds a bit crazy, but it’s all metaphorical, and I can strongly visualise it in my mind. Before therapy I was aware of a great, big, aching emptiness within me. It has been the reason I have engaged in a lot of unhealthy behaviours, to try and fill that void. Where there seemed to have always been nothing, suddenly there was something. Small at first and barely recognisable. I had always visualised myself standing on the edge of a giant hole in the ground, that went on as far as I could see. I had always assumed that jumping over the edge meant that I had truly given up on life. There was something drawing me to step out into the void and see what was down there. So one day, I did. What I found there, was myself. Not all of me, but all of the negative and painful emotions I had tried to hide. In attempting to bottle it all up I had created a kind of other entity in my own mind. It scared me to death. 

After a long and drawn out summer I found myself exhausted. It was as if I was doing battle with my own soul. That girl I had found at the bottom of the void, I wanted to get rid of her, along with all my pain. I sort of saw her as some kind of adversary. All this fighting landed me straight back in the hospital. I sat in that dark place cursing my therapist for encouraging me to be more introspective. When she offered me a place in another ongoing therapy group I wasn’t exactly impressed, but part of me thought it couldn’t possibly make things any worse. 

Joining the second group was strange. It was like returning to a new school year, but all your classmates have morphed into different people. There was one girl from the previous group and I stuck to her like glue. We both described a sense of failure that we had had to return. It was as if we were having to resit the course. It took everything I had to be optimistic. I knew I had to try and get the most out of it. 

I poured all my effort into digging deep into that dark place. I talked and talked and talked, in the hope that it would lead me to getting rid of that girl in my soul. Over the next year and a half I went off sick from work time and time again. I would go through a cycle of struggling to keep up with life, starting to crack, having a breakdown, getting hospitalised, getting released and having a sudden realisation about my life. Lather, rinse, repeat, ad nauseum. What I didn’t realise was that this internal struggle, causing me all these problems, was actually taking me through a long and drawn out healing process. There was still one thing I couldn’t crack.     

I was at a stage now where I had to do this on my own. I had thoroughly used up all my resources. It is important in therapy to know when you’re done. Even though I still hadn’t defeated her, I just knew. Around October time I discussed my decision with my therapist. We agreed that I wouldn’t carry on therapy in the new year. She was encouraging and realised that I had gotten everything I could from her. I needed to take a leap of faith. She promised me I could remain under their team for a while, until I was sure I could make it on my own. I would still see the psychiatrist for updates and medication reviews. I also had a meeting with the head of service who arranged for me to be put on the short waiting list for Dialectical Behavioural Therapy (DBT), so that I could gain more skills for coping with my emotions. This was a shock to me as before DBT wasn’t available in my area for outpatients. The final session came and went and I steeled myself to go it alone, out in the real world. 

January. It happened in January. Since leaving therapy I had been expecting it. I knew now that the biggest realisations happened post-therapy and that change usually came about after a breakdown. And it was one hell of a breakdown.  

Psychotherapy Experience - Part Three

One thing they never tell you about group therapy is how much you’ll cry for others. It is thought that some people with BPD have higher levels of empathy and compassion for others as a result. It’s heavily debated, but I feel like I have a very strong sense of it. When I see people in emotional pain it’s almost as if I am feeling it myself. That often leads to me avoiding people when they are upset or angry, in order to cope. Being trapped in a room with emotional people, would have scared the hell out of me back when I first started. It was a bit like exposure therapy in a way. I would have to learn to allow myself to feel the pain of others and not shy away. There really was some serious pain and trauma in this group. Because of confidentiality and not wanting to trigger anyone reading this I won’t go into detail, but so many topics were covered. We often found ourselves crying together. Fighting back the emotions became our enemy as we tried to navigate painful memories and allow ourselves to feel in the safe space we’d created. 

I’m not entirely sure how psychotherapy works, but truthfully talking about my life and issues  seemed to have a positive effect on me. At the start of therapy I had felt like I had no sense of who I was or what I wanted from life. I simply did whatever would make other people happy or what I thought was the right thing to do. I wasn’t living for myself at all. I had given up on me a long time ago. It felt like I was always wearing masks to hide the nothingness and confusion underneath. I always thought there was no one underneath, like I was just born wrong and empty. The first year of therapy gave me an awareness there was someone underneath. It taught me that it was okay to be angry and it was okay to be upset. I learned that if I started crying, I could stop it in time to get on with my life. It also gave me the fight to continue on despite feeling as if I would never get better. I suppose in a way it gave me hope. 

Meeting like minded people who were also struggling was one of the greatest gifts. I had grown up feeling so alone, as if no one truly understood. But these girls did, and the therapists too. A bond had formed between us. The only disappointment was that a year had passed and it was almost time for the group to end. I couldn’t believe it had gone so quick. I had talked about so much of my past, and the more current issues I was experiencing. Getting it out into the open felt really good and allowed me to start analysing my unhealthy behaviours. 

The last session was really emotional. We all gave each other cards and tried to secretly exchange our numbers. We knew we weren’t supposed to, but something about the end of group just seemed so final. In the world outside of therapy we felt alone. You don’t usually run into others that have experiences like that; at least not that are going to share their issues openly. There’s plenty of people online, but those sorts of communities can be incredibly toxic and triggering. The ending felt like I was losing some much needed allies.