Update on my battle for treatment for PTSD

So following on from my post – https://ptsdstormsandbutterflies.blog/2019/05/24/mental-health-awareness-week-part-2/

This week I have received an update from my CPN regarding EMDR therapy. The Community Psychologist based in the Community Mental Health Team asked my CPN to contact a consultant in Medical Psychotherapy to discuss whether this was a viable option for me. The outcome ‘no’. Trying to access treatment has been soul destroying. I don’t understand why EMDR would not be beneficial for me, there is not the same level of ‘talking’ and ‘exposure’ as Trauma Focused CBT, it can also provide very quick relief for symptoms. I ended up being able to read my notes on the computer screen. Basically, what I hadn’t clearly understood (or no one had told me in the way it was written in my medical records). The Consultant in Medical Psychotherapy is saying that there should be NO further attempts to offer any Trauma related therapeutic work with me. One of the reasons being is that it is felt that it would ‘destabilise’ me too much and I would not cope with it. My mental health is already unstable! I just don’t ‘get it’.

So – what am I supposed to do? I live with all of these trauma symptoms everyday and night, yet no one is prepared to offer me treatment to potentially aid my recovery. None of it makes sense. It leaves me feeling completely distraught and hopeless. It was suggested again that I look at the options of receiving treatment ‘privately’. This angers me. In the UK we have a National Health Service which is supposed to provide access to free healthcare and treatment. I am on welfare benefits so only have a ‘low income’ making the affordability of private healthcare zero. Six years on and I am still no further forward, in fact I’m back to the beginning.

On the plus side my CPN is doing some work with me on my self-confidence and self-esteem using a book called ‘The Compassionate Mind Approach to Building Your Self Confidence using Compassion Focused Therapy” https://www.amazon.co.uk/Compassionate-Mind-Approach-Building-Self-Confidence/dp/1780330324

This book is very well written and I am finding that the balance of theoretical perspectives and practical exercises are helping me to think about aspects of my life and gain a deeper understanding around how these have impacted how I feel about myself. To end on a positive there is a saying ‘with knowledge, comes power’ I can relate to this. I am constantly saying to people around me including health professionals that ‘if I knew or understood what was going on I could fix it’. I’m not necessarily saying that I can ‘fix’ myself. However, this book is providing me with the knowledge, the space to ‘think’ and strategies to reflect on certain changes I could make which may in turn help me to hold a much more balanced view of myself rather then being so self-critical all the time which I am learning is undermining my self esteem.

There are several titles in the series to cover other areas such as anxiety, managing anger, stress, post-natal depression, overeating, trauma (which I may well move on to next).

If you are interested then have a look at the website: https://compassionatemind.co.uk/resources/books

Mental Health Awareness Week – Part 2

As a follow up to my first published post on Facebook, I finished Mental Health Awareness Week 2019 highlighting my on-going battle to receive treatment for my PTSD…….

” I have been passed around from pillar to post by support services (alongside a police investigation) from a specialist Domestic and Sexual Violence Service in London, to more local services such as Rape Crisis, Sexual Assault Referral Centre, Victim Support, DVIRP (as it was called at the time), Living without Abuse (who represented my views at a multiagency risk assessment conference MARAC), Leicester Counselling Service (twice), IAPT, Adult Mental Health Services made mistakes in December 2013 and owned up to this in August 2014 when they finally referred me to specialist services within the NHS. For each of these services I have had to have an assessment, each time telling the same story, very traumatic to then be told half the time they weren’t the right service to meet my needs and I’d be signposted onto the next.

By the time I had an assessment with the NHS for trauma focussed CBT (recommended treatment under NICE clinical guidelines) it was November 2014 and 16 months had passed. They saw the mistakes that had been made and dated my referral when it should have been made December 2013 but there was still a waiting list to get through. By the time I was allocated someone it was May 2015, nearly two years.

I attended a few sessions before the therapist told me she couldn’t continue until my mood was more stable and referred me back to consultant for a medication review. I then restarted in January 2016 by this time 2.5 years had passed me by. It was a tough battle, at one point at the end of February 2016 I was told again that the therapy would have to end. I had to fight for it to continue which it did.

This was the case until the beginning of September 2016 when suddenly my mum (who had Myeloma) had a seizure and ended up in hospital. The therapist once again put my treatment on hold. No one knew what was wrong with my mum for weeks but she deteriorated before our eyes. Her consultant haematologist had never in his working life come across what my mum was experiencing and had to get second and third opinions from Addenbrookes and Queens Med neuro depts….a brain tumour on her frontal left lobe from the myeloma. They had no example of treatment to follow so had to trial the treatment regime. To cut a long story short thankfully, for her, my dad, me and the rest of the family she was able to make it home with specialist equipment and carers at the end of November 2016. We had a good Christmas.

My therapist agreed to review recommencing therapy with me just before new year. We agreed a date for beginning of January 2017 (3.5 years had now passed). Sadly my mum had another seizure on New Year’s Day which indicated the tumour was growing again, this time rapidly. I updated my therapist when I saw her but we agreed to continue fortnightly. I had two appointments and sadly my mum died in February 2017. My treatment was put on hold again.

I had a meeting with the therapist at the end of April 2017 which I thought was positive. However, on arrival I was told that my treatment would not resume until I was ‘over the loss of my mum’. She told me that once I felt able to carry on with the specific trauma work to contact her. My response to that was one of disbelief and by this time the hopelessness had kicked back in big time. I remember saying to her ‘how am I supposed to get over the loss of my mum without any support’. I had been told by so many people that my needs were complex but I knew that for myself.

During a random conversation with my consultant in August 2017 he happened to say something about me being discharged from that particular service. The therapist hadn’t told me, no one had told me. I found out that she had discharged me in May 2017 when she found out I was under crisis team. When I spoke to her after conversation with consultant she told me it was ‘a paper based exercise as she couldn’t have someone open on her caseload that she wasn’t seeing that were obviously at risk’. There was a meeting scheduled for end of October 2017 (4 yrs 3 mths) and she said we’d talk about it then.

My GP, Consultant and therapist were at the meeting along with myself. Basically, she had led me down the garden path and had no intention of resuming my trauma focussed CBT at all. During the meeting she said that mistakes had been made during the assessment process and had she done my assessment she would have delivered the therapy differently. To this day I do not understand why if this was identified by her why she didn’t change my treatment plan accordingly.

I have tried to access 1:1 bereavement counselling through a Leicester based charity but due to all the trauma stuff it’s too complex to separate out, that became apparent after a few sessions so I’m stuck with not being able to process that either, then my friend’s suicide, stuck again….layers of trauma that can’t be processed.

My CPN did suggest last year (2018) that I went back to Leicester Counselling Service to have another assessment with them (now over 5 years of PTSD and no treatment) I’m disadvantaged as my income is ESA I do receive a small disability premium on top but it’s not much. I would be able to afford to make a nominal payment. Another assessment, another having to ‘retell my story’ traumatic in itself. The outcome after the psychotherapist spoke to the director – that my needs were too complex for them to work ethically with me as they weren’t connected in any way to Adult Mental Health Services and that Adult Mental Health Services have a habit of signposting people their way that they should be managing themselves.

It’s now May 2019 and in the middle of June 2019 starts the 6 year anniversary of my trauma. Still no further forward in receiving treatment and I’ve no therapeutic support in nearly 3 years. In reality I’ve only really had a block of 8 mths of treatment in those 6 years which because it ended abruptly has left me ‘stuck’ in the work I was doing and the processing. So my brain is effectively stuck, it can’t process what it needs to then everything else life throws at me creates a backlog of stuckness which then becomes one big mess and it can quickly send my brain into overload. I’ve done 99% of what I’ve described on my own over and over again with either no or a minimal social network. I have felt so isolated and it’s been such a tough and lonely journey.

At times I’ve been pushed to go ‘private’ but 1) I don’t have the financial means 2) we have an NHS service and morally I find it wrong that I should have to pay for treatment. I’ve never not worked until 6 years ago and haven’t been able to work since.

This week I was informed that EMDR therapy is another treatment for PTSD that would benefit me but the community mental health team have one psychologist who can deliver it and she has a 2 year waiting list. They have gone back to specialist psychological therapy services to see if they will deliver it instead. Deja vu, it would be the CBT dept who discharged me without telling me….going round and round in circles springs to mind. 6 years I’ve been waiting and it feels like I’m back to square one.

It leaves me with so many unanswered questions the main one being how on earth am I supposed to rebuild my life without any treatment or specialist support? I do what I can, but as you would have read in my other post, day to day living is just so incredibly hard and drains me of a lot of physical and emotional energy.

That’s it from me, I think I’ve done enough sharing now, more than I’ve ever done on a public forum for Mental Health Awareness Week. I will return to being quiet!

As I sit here the birds are tweeting, the sky is shades of pink, orange and randomly, purple as the sun rises and a new day begins……I’ll try and do what I can and I have plans to see a friend this afternoon hopefully for a relaxing walk if her legs are still working after a road race this morning 😂😘x”

Mental Health Awareness Week – Part 1

I published this on my personal Facebook page as part of Mental Health Awareness Week 2019, after being told by one friend that ‘people need educating’ and a second friend who told me ‘don’t ever be silenced’.

I decided it was a good place to start with my personal blog after receiving credit for speaking out and sharing the most I’ve ever shared on a public domain………

“This week is Mental Health Awareness week and what struck me yesterday morning when I went out for a run and my PTSD symptoms (which I’ve had for 6 years) kicked in straight away is that I’ve seen nothing in my news feed around ‘open, honest conversations and mental heath’. Yes, I run, many people would assume that helps me manage my mental health, in some respects that’s true, but for the most part as soon as I start running I’m constantly triggered by the environment whether I’m on my own or in a group. These are mostly related to sensory information overload and can be things like sunlight or car headlights in my eyes, noise, speed of traffic, unfamiliar places, smells, darkness. My heart rate will increase, leading to difficulties regulating my breathing, sometimes chest pain. I have to have a constant dialogue with myself reminding myself that I am safe and use distraction techniques to the best of my ability.

My biggest fear – being in a group and my ‘flight’ response kicking in and suddenly feeling unsafe, like I’m not able to stay in present moment, that I ‘need’ to get home and running off home. This holds me back from participating in group runs as my confidence drops further adding to feelings of social isolation, lack of self worth, lack of belonging etc.

Last night I tried to start an open and honest conversation. Initially, it was met positively with a couple of open responses. The way I wrote it was blunt and to the point – the truth. I won’t apologise for this. I did re-read before posting, I am not prepared to ‘flower anything up’ or use ‘humour’ just to make it more palatable for readers 1) it’s a serious issue, 2) it’s not funny.

In my opinion I got singled out and therefore ended up feeling marginalised. This was never my intention of creating the post in the first place. I know I am not alone. Statistics say that 1 in 4 people at any one time will be struggling with their mental health. Why is it that we can’t have honest conversations just like we do if we’ve got a physical illness or injury? Things will never change if this is the case. Stigma will remain high, individuals will continue to be afraid to speak out for fear of judgement etc.

In January this year a very close friend of mine took her own life, leaving behind her 15 and 13 year old sons, partner and an extensive support network of friends. Ironically, she was diagnosed with PTSD a couple of years ago. She was also the third person in my life to have taken their own life.

Since then my life has been a blur and arguably those that have supported me and had me in their home for 2 mths would say I gave up on everything. That is true. I even stopped running which I would normally continue with despite a decline in my mental health (albeit running on my own). Last year I’d set myself challenges including Naseby 1645, Notts 20 and Manchester Marathon. When I stopped running I realised there was no way I would be able to achieve these things. Making the decision to withdraw/defer resulted in me losing the point. There was no point in running.

I’ve recently given away/transferred race places as I’m not strong enough for them. At the beginning of this week I had to delete one of my posts for a race place as individuals started having ‘banter’ amongst themselves about the place being taken. This might have been ‘banter’ but you know what it hurt me. No thought or consideration for why I might be selling my place.

Previously I’ve asked questions during the winter months about routes and street lighting. Genuine questions as I struggle running in unfamiliar places in the dark, triggers my PTSD and results in me feeling unsafe. A few days later there was a post on a ‘night race’. In the responses, again ‘banter’ this time about whether there was any street lights at Beacon Hill. Yes, you’ve guessed it I did not find it funny. It’s time that everyone of us took responsibility and showed some compassion or stopped to think for a moment that there may be a genuine reason why a question is being asked.

Despite being at home last night, my PTSD was triggered by the events and when that happens at home my flight response will still kick in resulting in me putting my shoes on and leaving my house not knowing where I am going all I know is I need to ‘get away’. I can end up miles away from home. Fortunately last night I was able to head back towards Birstall and walk a loop.

My PTSD is not solely triggered when running, I live with the symptoms and have to work hard with myself having a constant dialogue throughout the day, everyday. I experience images and flash backs and I can disassociate as my brains way of shutting down my response to stress overload, not something I have control over, it’s an autonomic physiological reaction as is my anxiety and panic.

I don’t have an end to my day as I don’t sleep properly, I can’t think it’s ok at 10pm I’ll go to bed and I’ll get a break until morning. I’ll go to bed and be woken by nightmares and a racing heart and have to get up 2-3 hrs after I’ve fallen asleep. Then at some point I’ll be able to go back to bed and get say 2hrs of sleep then I’m awake again. It’s no wonder that I feel exhausted most of the time as I never get proper rest that allows my brain and body chance to restore some energy for the day ahead.

All of this is going on and most of you will be oblivious as I try to hide it from the world, as I try to have meaningful contact that perhaps will give me a break or provide some distraction even if just for an hour. Then if I really feel I can’t hide it, I will simply just disappear and not really leave the house.

I am not after any kind of sympathy or even any kind of response from those that take the time to read this. This is my life, this is what I have to deal with on a day to day basis and you know what it’s bloody hard. I do it on my own most of the time, I don’t have people phoning me or knocking on my door popping round for coffee. I know there are people reading this that would say if you need anything just ask, but you know what actions speak louder than words and the truth is I’m unlikely to ask for anything as most of the time due to my lack of self worth my brain would tell me that if you really wanted to then you would make the effort too.

I couldn’t have managed this year without 2 very special people and you know who you are ❤ x”

Welcome

Some wall's are harder to climb when you have had…

Yes! This is me too, if you can relate to this then you are not alone.

In fact, I’m doing this most of the day, everyday.

Whether I’m on my own wanting to hide or around other people and trying to hide the fact that this is what I have to do just so that I can try and have some kind of meaningful contact with the world xx