Wednesday, 15 March 2017

Patient Abuse- speaking out, one year on..

I haven't known how to write this blog post, but I knew the time would come when it felt right, and I've decided that time is probably now.. I don't want pity, I just want to take control back. I want to express what happened to me on my own terms, because it's nothing to be ashamed of or embarrassed about (despite how it might feel) - after all, it was not me who did anything wrong!!!

It's 1 whole year since I was assaulted by a nurse. I'm not going to skirt around it at this point, I'm just going to say it as it is. I was treated abusively by someone who I should have been able to trust.

It all happened 365 days ago when I attended hospital for a routine neurology appointment. My appointment had been difficult for various reasons and I was massively struggling with the hospital due to post-traumatic stress resulting from some distressing experiences during my inpatient stay. It all became overwhelming shortly after my appointment and I collapsed in the waiting area and had a number of fits in close succession.

I bashed my face on the floor, was nearly treated for epilepsy (which I don't have), was hoisted off the floor by staff who it seems hadn't hoisted anyone except in training, all in front of a really really packed waiting area. I was taken into a side room and had loads of monitoring done, was thrown around a bit having my cardigan taken off me (due to a high temp), and the nurses were convinced a crash trolley was needed. I was far more aware than most of the staff thought, and bounced in and out of convulsive seizures for over 40 mins before a decision was made to take me to A&E/Resus (where my previous worst experiences had taken place). That was all difficult, but everyone had my best interests at heart- the worst was yet to come.

I got down to Resuscitation accompanied by a doctor who knew me well and she said she'd speak to the staff and make sure they knew what was going on and what to do and not do. Her and the emergency department junior doctor were incredible. They talked to me reassuringly, caused me no additional stress and talked to me a bit about what they'd been up to recently to put me at ease etc. They were great. Unfortunately others involved weren't.

As a result of seizures, I ended up laid face down on the bed, with my head to the side. I was frightened. I was left alone with no interaction for long periods, which I was finding difficult due to the environment and past experiences in that very room. Things took a nasty turn when a nurse came over, I heard her flicking through my notes (which obviously detailed all my diagnoses and 10 week long hospital stay with the same condition), and then she said 'who the hell fakes a seizure?!' before proceeding to try to get a reaction out of me and get me to 'stop messing around'. The nurse lifted the head of the bed to vertical, causing a crushing pain in my back and tearing pains in my abdomen. She bent a pillow around my face, smothering me. I remember being in that moment, desperately focusing on the sound of my monitoring trying to work out whether my oxygen level was still ok, and trying to keep calm. She was doing anything possible to get a reaction, but I was completely paralysed and powerless to do anything about it. She must've thought that if she was right I'd deserve it and she'd catch me out, and if she was wrong I'd be unconscious so would never know and she wouldn't get caught, but although my seizures are entirely real and genuine, they are non-epileptic and I remain completely aware throughout.

The consultant was later also completely inappropriate about/towards me, getting impatient with me, particularly when I was hyperventilating (which is actually something that happens sometimes as I come out of a seizure before things settle). The second I opened my eyes, he was asking me about making arrangements for my transport home. He also insinuated that I wasn't genuinely suffering. The second I was awake I was bombarded with questions and expected to do things I wasn't capable of.

You expect medical professionals to be educated about and understand your condition. You expect them not to jump to conclusions about you and your disorders. You don't expect them to think they know better than your specialists. You expect to be safe in their hands. You expect them to treat you with kindness and compassion. You expect them to do their best for you. It's rare, but unfortunately that's not always the case and abuse does happen.

A few days later, I told my psychologist what had happened. She was horrified and said she would have to inform someone, and did so with my permission.

The next I knew, a policeman rang me. It had been escalated several times within the hospital, and then the police had been informed.

I hadn't informed the police directly, but I did know that what had been done to me amounted to assault and was very wrong. I knew I had a duty to protect other patients from experiencing anything similar, which is why I told my psychologist and why I later made a formal complaint, but it was still really scary when the police rang.. I'd never really had anything to do with them before, and just the call and having to talk about what happened shook me up a bit.

The policeman came round having already done some investigations. He took some extra details from me, before returning to the hospital to interview and investigate further. He rang me regularly to keep me informed and was amazing throughout the whole time. I felt believed and supported and was treated with kindness and respect throughout.

Ultimately, it was my word against the word of the medical staff. I felt that theirs carried more weight, that I would be disbelieved, and the imbalance of power seemed so unfair. At the time of the police investigation, no-one was admitting to being the nurse in charge of my care, and although the consultant was identified, he hadn't broken the law, and didn't divulge who the nurse was. It felt very much like people were covering each other's backs. The police investigation was eventually closed due to insufficient evidence, but not due to lack of effort on the part of the policeman and he had informed the detective senior to him etc due to the seriousness. It turns out it's very hard to pin anything on anyone when you can't give a 100% definite description of the person who physically attacked you (my eyes were closed at the time, as I was seizing, and I wasn't sure enough that it was the same person who later 'looked after me').

The hospital's response to my complaint was pathetic and deeply distressing. I was distraught reading it- it was awful. It did get referred on to the safeguarding team, and I was offered a meeting with the consultant involved etc, but I've never felt up to taking things further because of the significant trauma involved. At this point, both members of staff were named and identified, but due to a lack of hard evidence, and difficulties with my own mental health, it just wasn't possible to pursue the matter further. It's on record though, and hopefully the people involved will have learned from it, and I seriously hope nothing similar will happen again.

It was a horrendous experience, and has really messed me up. As I mentioned above, I was already struggling with (quite severe) post-traumatic stress as a result of hospital experiences (including a few others where I was mistreated to an extent), so this experience was the last thing I needed. My post-traumatic stress sky-rocketed. I had my PTSD screening a few days after it happened with the psychologist I was already seeing, and there was no doubt that my score was sufficiently high to indicate clinically significant post-traumatic stress; I was scoring very highly in so many areas.

My PTSD has remained significant. I have real trust issues and see danger everywhere. I find medical appointments very difficult and hospital environments are challenging. I fear everyone and everything, because as far as my body and I are concerned, danger lurks places you wouldn't expect- someone I should have been able to trust really hurt me.

Where do things stand now? Well, I'm receiving ongoing psychological help. I'm suffering chronic back pain, that I have been too frightened to have properly assessed until recently, so I don't know how long-term/permanent that is likely to be (I see a physio specifically for my back for the first time next week, to see whether they can help- if not I'll need further investigations). I avoid emergency departments like the plague and feel I need to be accompanied for safety during a lot of appointments.

I refuse to continue to be a weak victim who stays silent out of fear. Yes I was abused physically, verbally and emotionally, but I refuse to be completely broken by what I've been through. They got away with it, and that's hard, but carrying fear and embarrassment and bitterness hurts me not them. I won't ever forgive them I don't think, but if either of them ever finds this, a sincere apology would mean a lot to me, and to be perfectly honest, I think I deserve that having not publicly named and shamed you!

Please don't tell me to move on and forget about it- I am trying, but it's hard to put something like this behind me, particularly given the other things I have been through. Please don't tell me I have overreacted, because you weren't there and don't know how it was for me, and I already give myself a hard enough time about it. I'd be so grateful if you could please just support me through the different stages of my recovery. It's been a year and it still feels recent in a way, but I hope with time I'll be able to process what happened and move on without it affecting me. I'm working on it.

Tuesday, 14 March 2017

Last ISTDP (psychotherapy) session

Today, I had my last session of Intensive Short-Term Dynamic Psychotherapy. It's been a really challenging time, and I've struggled with the process, but I hope, with time, it will prove beneficial.

The psychotherapist working with me recently, believes I can recover. I'm working on having that same belief and hope, but it's a definite work in progress. Without the belief that I can recover, I won't. I fear a devastating relapse, despite knowing that fear is unhelpful, and I can't help feeling that way. It's going to take some time I think, and I'll need to keep reinforcing the way I want to think and feel.

Recovery isn't easy. It takes determination and fight and strength, all of which I'm not sure I have just now (despite everyone telling me I do). If I'm not strong enough now, I hope my recent work will give me the knowledge and understanding and experience to improve when things fall into place in the future.

Would I recommend ISTDP, particularly to others with NEAD? If you don't feel much (emotionally, not thinking or physically), then it can help you get more in touch with the things that are currently unconscious. It can help suppressed emotions (that are so so damaging) be expressed rather than internalised. You need to be open to the mind-body connection (which is massive) to get anywhere with it though. More than anything, you need to be brave and ready to face difficult experiences, feelings and emotions; that was something I didn't fully appreciate prior to starting if I'm honest. You might feel angry or sad or so many other emotions during sessions. They might also seem scary (I was terrified and panicked at times). Physical symptoms like seizures, movement symptoms and body flashbacks might be triggered, but that's ok, and you'll be safe with your therapist, as they'll understand these bizarre symptoms. The whole aim is to learn to tune in to your body, feel again, understand what's behind the symptoms you experience, and learn to express emotions outwards. I realise I've deviated and not properly answered the question, but I think it's too early for me to say for sure what my opinion on ISTDP is. I think I've learned and experienced a lot, and I hope that will make a difference to me moving forward. It's been really really really hard, and things have got worse before they (hopefully) get better, but I hope it's meant things can change in my future.

Looking back on my ISTDP experience, I'm glad I did it, but at the moment my mind is still quite a mess. I'd be lying if I said it's helped right now, because at the moment I'm still having daily, long non-epileptic seizures and actually going completely unconscious for significant parts of some of them. I'm scarily depressed and hopeless just now. I'm still turning a lot of negative emotions inwards and beating myself up rather than expressing them healthily in any way. I'm not in a great place just now.

In a way I'm relieved it's over, but I'm grateful for the opportunity and hope I can use this period of intensive therapy as a springboard to boost me forwards and aid my recovery, rather than reverting back to all my automatic processes that seem familiar and in a way 'safe'. Mentally, I'm pretty much at rock bottom, but I hope I've gained the skills and knowledge to work my way back up, with continued support from professionals, family and friends.

I want this blog to detail an eventual success story. I want to be the person that has overcome every obstacle put in my way. I want to be sharing my recovery with you all and giving others hope. If I can recover from my severely affected state, then I believe anyone with these functional disorders has the potential to recover with the right help and support and opportunities and an open mind.

Unfortunately, I'm not in that place YET. I'm still really struggling mentally and am finding that my mind frames things negatively/unhelpfully. I'm trying to notice and resist that and fight against my automatic responses, but it's not easy.

I'm trying to believe that I've not been broken by all I've gone through, even though at the moment it feels like I have. I'm trying to acknowledge my struggle but trying to remind myself that I have survived, and I don't want to let the events of my past wreck my future.

I have choices. I have options. I don't always have control of my thoughts at present, but I'm trying to be more aware and mould them to a greater extent. I still want to give up, more than anything really, but I also have the option to take more control and eventually make what I want of my life. With time and effort, there are so many possibilities..

Wednesday, 1 March 2017

My 7 year ME/CFS diagnosis anniversary

1st March. My MEversary. Diagnosis anniversaries are tough, and I can't properly explain it.. They make you reflect on life and where you're at, and the years with chronic illness that have passed. I was diagnosed with Chronic Fatigue Syndrome in 2010, 7 years ago. I'd been ill for 6 months. I was 17 at the time. I've now been ill for 3/10ths of my life.😳 How the hell has that happened?! I thought I'd be better in a matter of weeks. 390 weeks (and counting) isn't quite what I was thinking..

The last 7.5 years have been beyond difficult, but they haven't been all bad. I've had some great times, with some fabulous people. Chronic illness hasn't wrecked everything. But it has wrecked a hell of a lot.

Chronic illness has scuppered a lot of my life plans. Uni didn't go to plan, and became out of of the question when things escalated. I'm currently not massively functional and am very held back by my health. I've been exhausted and in pain for 7.5 years. I currently have carers coming into me and am having alarms set up. My life is not how I would have ever imagined.

I hate that I got so ill while I was so young, and I hate that it's been so many years and I barely remember being well, and it's not always easy to know whether it's good to remind myself of all the years ahead of me. I hate the possibility of so many years ahead of me suffering with ill health (physical and mental), but I'm still young and there are so many possibilities and different ways I can choose to shape my life. Mostly I choose to live 'in the present moment', trying to distract myself from the past to be honest, but sometimes it's good to look to the future, and try to convince myself that it can be enjoyable and positive.

There are good things about my life, but it's also challenging and hard and painful and dull and lonely at times.. My health problems eventually took their toll on my mental health, and my mental health difficulties, and treatment for them, is a real struggle, particularly alongside demanding physical rehabilitation.

7.5 years is a really long time. But things have changed and varied a lot during that time, giving me hope that things won't be this way forever. There will be challenging times ahead, I'm sure of that, but I'm currently making some progress and working hard with various professionals, so I hope with time things will seem easier. In the last year I've learned to stand again, and learned to walk again. I can now do some things more easily. I'm no longer afraid to move my legs for fear of triggering seizures. I'm a bit more relaxed in bed at night. I've come a long way in a number of ways, and there is reason to believe that my progress can continue.. I daren't believe I can make a total recovery, but (some..) things are moving in the right direction, and I can only hope that that continues..

Hopefully another year down the line I can write a post reflecting on the amount of progress I have continued to make. My ME/CFS is no longer the condition that is disabling me most, but it continues to be a struggle, and it's where it all began, 7.5 years ago.