Wednesday, 15 March 2017
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
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
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.
Thursday, 23 February 2017
Just an update..
Physically, I'm doing fairly well. My hand coordination is mostly a lot better (unless I'm startled or post-seizure). I'm walking quite a bit now- I'm using 2 crutches and can only do very short distances, but the amount I can do is actually quite functional and useful now. I'm still supervised when walking but I don't need someone glued to my side anymore. I still use my wheelchairs quite a lot, but I'm often using my crutches as much in the house now. I've even had a few occasions where I've left the house completely without my wheelchair (only out to the car on the drive and then in from the car a very short way, but for me that's massive!). It shows a physical step forward, but also means I get some mental space away from the constant presence of my wheelchair too. Yes, my wheelchair is enabling, but to an extent it's also symbolic of a phase of my life that has been pretty horrific, so some space sometimes is very nice..
Life-wise, I got the keys to my own flat 10 days ago, and am absolutely delighted with it. It's stunning and I'm so very lucky to have it. Still lots to sort out before I can move in in terms of disability-related stuff, but we're definitely getting closer. I'm loving getting it all as I want it and having that control, but it is a bit stressful too, particularly all the paperwork etc.
Mentally, it's complicated.. I recently started Intensive Short-Term Dynamic Psychotherapy (ISTDP). It's beyond intense. I've spent 10 hours over the last 2 and a bit weeks working with a psychologist really trying to experience and process emotions of difficult past events. It's incredibly, incredibly hard going, to the extent that I was really reluctant to go to my most recent appointment (and had a bit of a meltdown at the start of the appointment as a result). I have quite a lot of seizures and body flashbacks during sessions, as well as my movement disorder flaring, and some panic attacks, all of which is physically and mentally draining, and it's been incredibly hard to break through my current dissociative state. My brave smiley mask has become so ingrained, so many people have given me well-intentioned but ultimately damaging advice to just keep pushing through (physically and mentally), and past events have challenged and messed me up so much, that I don't properly feel emotions to the extent I should. Trying to connect emotionally to past traumatic experiences (to properly process them) stresses my body psychologically and physiologically. My body and mind freak out, particularly because my anxiety levels are a really significant problem. For now, the psychotherapy is kind of unsettling me and I haven't yet seen an improvement, but I'm hopeful the ISTDP will help with a bit more time, as it seems to be doing something, and to be honest, I desperately need it to.
I'm still struggling with my depression to an extent. Despite having things to be really delighted about just now, I still feel pretty deflated a significant proportion of the time, and at times my depression is actually still pretty severe. I feel like I sound very ungrateful saying that when I've just got my flat etc, and I sort of hate myself for being so low when I'm lucky in some ways and 'should' be happy at the moment, but I know it's not my fault that I have depression, and I'm very aware (through therapy) that I need to be kinder to myself. Depression notices all the really difficult things in my life but pays little attention to positive life events, so the good things in my life right now haven't cured my mental health problems- that just doesn't happen (shock revelation there for some people).
I've been continuing to have physiotherapy and occupational therapy. I made (microwaved) poached eggs on toast with them one session, and climbed a flight of stairs another (and then failed on the way down and had a seizure on the stairs- oops 🙈). Climbing all the way upstairs was an immense achievement, as I really haven't been taking steps up at all for very long in the scale of things, so I can't wait to try it again next session.
I do tend to overdo things in physio/OT sessions and cause all sorts of symptoms in the hours/days that follow if I'm honest, but it's so tempting to 'make the most' of my time with them. I do try to reign myself in, but it's something I struggle with. I'm aware though, and know that being mindful of my limits is important.
At the moment I'm having care visits 4x/day to check on me and supervise things and that's going well. I'll have mostly new care workers when I move into my flat, but will hopefully be able to keep some familiar faces too, particularly for some of the longer visits (that'll be added when I move) where I'll be taken out and about, as I need to feel really confident with whoever takes those visits on.
A lot of my care needs are as a result of my seizures. At the moment they're happening every day or two on average, with multiple on some days. They're tough-going. A majority are without convulsions (I look like I'm in a deep sleep or have fainted, even though I'm completely aware just paralysed), but they're still exhausting. The fear of them is tough too, as they can happen with no warning at all.
My pain in general is variable, but my back pain in particular can be difficult.. I've finally had the courage to see a doctor specifically about it though (my back pain was caused during an assault 11 months ago that I find difficult to discuss, and I knew that would be the first question). I'm now going to have specialist physiotherapy to try to help my back, and I'll get referred for more investigations if it doesn't.
I had a lengthy appointment with a seizure (and sleep) specialist a few weeks back and we discussed through about a number of things. Narcolepsy/cataplexy and sleep paralysis was something we discussed in quite a lot of depth and managed to rule out for various reasons. We're also pretty sure there's no epilepsy, although I've been offered a 24 hour home EEG (that I'm doubtful I'll go ahead with) or a 5 day inpatient videotelemetry (that I ruled out straight away as it'd be traumatic for me and I don't think there's enough evidence it'd be useful to justify it in the circumstances); those would be to definitively rule out both epilepsy and a sleep disorder.
I also discussed various medications, but made no definite decisions and am still thinking. I'll probably wait until I see another specialist so that I can discuss with her and get her opinion on any likely implications/benefits.
Overall, I feel like I'm doing ok, and getting by, but it's a struggle at the moment, I have a lot of symptoms, seizures are pretty unrelenting and concerning, and I'm certainly not thriving, but I'm doing my best and getting through each day. I fear a massive relapse of any of my conditions, and I don't know that I'd be strong enough to fight my way back up, but I'm doing what I can. Some days it's all too much, other days I feel like it's all manageable, so it's very much a case of just taking things as they come, but *shrugs*, I'll just have to see how things go.
Thursday, 2 February 2017
Let's talk about our mental health. Seriously, please people, talk openly about how you're feeling, not just physically but mentally.
Mental health is just as important as physical health, and the two are very much connected. Mental health problems can be devastating, and life-threatening. The stigma mustn't stop us from speaking openly about these difficulties. Most importantly, we need to make sure it doesn't prevent people from seeking the appropriate help. Things are improving, and more people are speaking out, but there's still a long way to go.
For the last few years, I've really struggled with my mental health. Summer 2015, my mental health nosedived and I ended up struggling with depression and then anxiety too. I was tearful, wanted to just stay in bed, found everything overwhelmingly difficult, had doubts about everything, and overthought everything. Luckily, I was in regular contact with doctors who had supported me with my other health problems for years, and they were amazing. I started on a low dose of antidepressants, and had some counselling at uni. Things improved.
I then had some awful experiences when I collapsed and lost all movement due to functional neurological disorder. My mental health difficulties probably contributed to my body collapsing to such an extent- my body systems just couldn't cope with the constant physical and mental pain; I was pushing myself beyond my limits in so many ways. While in hospital my mental health actually held up really well. I had a few down and frustrated days, but only as you'd expect and in proportion to what I was going through. It was a difficult and distressing time though.
I was in hospital partly with dissociative problems, where my body shuts down in response to becoming overwhelmed by physiological AND/OR psychological stress. Severe anxiety can trigger my seizures or cause symptoms of my functional movement disorder to worsen resulting in uncontrolled movements. Functional conditions are really complex problems and my mental health is part of the problem.
My next mental health battle was (and is) with post-traumatic stress. I am plagued by memories of experiences in hospital. In March 2016 something happened that worsened my PTSD hugely (I was wrongly accused of faking my symptoms by a nurse and was bent backwards by her while I was in a seizure, injuring my back and causing chronic back pain). This resulted in serious trust issues and severe anxiety in hospitals, as well as added pain to cope with. It's not easy for me to talk about it, but I want to mention it, because it has a significant impact on my life. Post-Traumatic Stress Disorder causes constant fear and over-awareness of my surroundings. My startle response is massively heightened. Being haunted by difficult memories is something I wouldn't wish on anyone.
My depression and PTSD worsened over subsequent months and I ended up in a really bad day place mentally. I ended up battling suicidal thoughts. I can't begin to describe how difficult it is to be in that mental headspace. I still sometimes end up in that mental headspace, but it's not as intense and constant as it was, thanks to a change to my antidepressant, and an increased dose, plus ongoing support from my psychologist. While at my worst, I shut everyone out. I became despondent, uncommunicative and had lost hope. I couldn't envisage recovering to any meaningful extent. My physical and mental health were horrendously debilitating, to the point where my quality of life was awful. I didn't feel capable of anything.
I got given the lifeline of an inpatient stay for intensive neurorehabilitation, to help me walk again, but that led to my most recent new mental health difficulty, when I suffered with overvalued ideas resulting from a very extreme level of anxiety while in hospital. Returning to a hospital environment after all that had happened in the past was practically intolerable, I had sleepless night after sleepless night, the level of fear and distress was almost unbearable, and as a result I started to experience things that weren't happening. It happened because I was terrified but in itself it was terrifying..
Although the overvalued ideas have stopped since discharge from hospital, I've actually re-started on my antipsychotic recently purely to help with my sleep. I'm also under a psychiatrist to monitor things because of my experiences in hospital. Being on an antidepressant, an antipsychotic, and seeing both a psychologist regularly and a psychiatrist makes me feel like I'm mad, but as my psychiatrist said 'there's no such thing as mad'.
As a result of all these experiences and my ongoing battles, I feel quite well placed to talk about mental health these days, and as though I should, but it still doesn't make it easy. I know most people won't be comfortable talking completely publicly about their mental health, but maybe Time To Talk Day will inspire you all to maybe open up to a few people, or encourage you to ask questions that give people the opportunity to really open up to you if they wish. Have those conversations- they help.
If you're struggling, please get help and support. Your GP is a good place to go to seek help- they can make referrals or signpost you to other services. In some areas you can self-refer for NHS talking therapies. The Samaritans can be contacted by phone or email. Friends and family are probably more than happy to listen if you open up to them. Please, don't suffer in silence. And you're not alone. So many people struggle with mental health problems- it's not just you, you're not an oddity, and you're not 'mad'.
If you have chronic physical health problems, and your mental health is suffering too, please know that that's so common and not abnormal at all. Please take a look at this link https://www.nimh.nih.gov/health/publications/chronic-illness-mental-health/index.shtml
If someone you know seems to be struggling, give them the opportunity to talk to you. Let them know that you're there for them, and SHOW them that you are. Drop them the odd message to ask how they're doing, and do so even if you don't get replies (as that could be as a result of depression or anxiety, but knowing you still care helps). Offer to go with them to appointments or sit with them beforehand. Please be patient and please stand by them even if they're not always nice to be around- mental health problems can affect attitude and behaviour- remember they can't help it, they're ill, and they need your support to get better and back to the person you know and care about. Don't give up on them even when they're giving up on themselves and potentially seeming like they're wanting you to give up on them too.
Does my mental health scare me? Yes, but I'm working with professionals to get better and am being well looked after. Does speaking out about my mental health scare me? Massively, but I think it's important to speak out so that others don't feel so alone. I want to help to normalise mental health difficulties and reduce the stigma. I'm not the first to face these problems, and sadly I won't be the last. My own problems are complex and debilitating, but milder or more simple problems are just as valid and are worthy of care and attention and support too. Kindness and openness can't cure mental illness, but they are so important, they can make the experience easier, and can maybe help to prevent things snowballing. Don't wait for problems to get completely out of control- seek help early and be kind to yourself and others- you never know when someone might need that kindness more than you could ever know..
Sunday, 8 January 2017
4 months ago today, I was admitted to the neurorehabilitation ward. I had no idea I'd make such significant progress, but also had no idea of the challenges I would face along the way..
(TW: mental health)
My time in hospital, and the utter terror it triggered as a result of my PTSD (from things that happened in hospital), caused me some really frightening mental health difficulties. I wasn't sure whether I'd ever again be totally sure of what's reality. I suffered what are apparently known as 'overvalued ideas' - an experience just short of delusions. I thought the staff were wanting to, and planning to, harm me. I believed I was being recorded and monitored. I was convinced I was being sectioned and sent to a mental health unit. I 'heard' the staff saying awful things about me. I experienced so much that didn't happen. The experiences were scary as hell, and the realisation that they weren't real and my brain was tricking me was far scarier..
There were times that the horrendous affect on my mental state, and the ongoing belief that the staff wanted to harm me, made me seriously question whether I should discharge myself. The only things that stopped me were knowing that my PTSD would be even worse if I left then, knowing the staff were very supportive of me during actual conversations, knowing I'd struggle to get the help I needed in the community, and knowing I'd very likely resort to suicide if I left hospital with my physical and mental health even worse (as I'd have been giving up on the admission that was my only reason for hope).
I'm glad I went though. And glad I stayed. The improvements in my physical functioning over the last 4 months have made a significant difference to me. All the help that was set up on discharge has also really helped. Plus, importantly, the admission has not been detrimental to my mental health long-term.
Although my mental health is no worse, it's definitely still shaky at the moment. I have people constantly telling me how fabulous my progress is and how delighted I must be.. At times I have been delighted, and I'm fully aware of how far I've come, and how incredibly lucky I am to have made so much progress. But I'm not as happy as people think I should be. Nowhere near. To an extent, yes, it's depression clouding my view of things. But it's also an appreciation of the battles I've faced already to get this far, and the continued challenges, frustrations and uncertainties ahead, plus the current ongoing symptoms and pain and crushing fatigue etc- yes, I've made great progress, but things are still so far from how I'd like them to be.
I also have mixed feelings about the new year. I should be excited about the year ahead because I'm meant to be moving into my own flat and gaining greater independence and moving forward with my life and I'm making progress and things look far better than last year.. But I know there'll be massive struggles in the year ahead, I don't know when the progress will stop, I still feel miles behind my peers, and I still feel like rubbish, with big barriers to living a 'normal' life.
I don't want this to be entirely negative, because I'm doing well. I'm able to take some unaided steps now (!!), my co-ordination is improving, my seizures are normally not so convulsive, my balance is improving, I haven't experienced any overvalued ideas since leaving hospital, I've only had one slight panic attack since leaving hospital etc etc. My depression and my persisting level of disability are problematic though.
I find it difficult to distinguish between what's depression and what's simply understanding my circumstances. I don't think there's a clear line between the two. Yes, wanting to hibernate, lacking motivation, negative thinking, feeling hopeless, not making much effort to stay in contact with people etc are symptoms of depression. I can recognise that. But I also know I have reason to be depressed, and I feel like I'm thinking logically and rationally about everything..
It's hard to explain, but it's quite isolating when everyone seems to think you should be feeling differently to how you are, and you're shutting down/shutting people out to an extent, and you're going through an experience that few can appreciate and empathise with.
Maybe all this is over-sharing, but I just want to be honest with people. And I'm sick of hiding things because of stigma, and I can't be bothered to battle with myself about what's 'appropriate' to share. So this is where I'm at. The unedited truth. I know I'm lucky to have made progress, and I feel guilty that I'm not more delighted when others aren't so fortunate, but things are still very tricky. I'm working on my physical and mental health and hopefully will continue to make progress. I'm being totally open and honest with the healthcare people working with me. It'll be interesting to see how I feel about things as time moves on..
I think I'll leave this there, as my sleep-deprived, depressed, exhausted brain can't handle much more, but thank you to everyone who continues to be kind to and supportive of me. It means a lot.
Sunday, 20 November 2016
Starting off with a life rather than health-related update, but it's one I just had to share!
The day after I wrote the previous post, I went to look at 2 flats in the outskirts of one of the towns my parents live near. The first was an absolute flop. It was advertised as having a lift, and we told the estate agent that I was a wheelchair user (when I say 'we', I actually mean 'my mum'- I don't do phones..haha). However, we arrived to be greeted by an estate agent who questioned whether we knew the lift didn't go to the actual flat... Clearly not. I was asked whether I could climb the 10 steps- I wish! What sort of idiot thinks it's a good idea to put a lift in that only stops on the landings halfway between floors?! So that was a no-go, and pointed out issues I hadn't even thought of, like the fact all the access doors were too heavy for me to even open.. Not a great start.
But then we looked around a second place. A ground floor apartment- so no lift involved!! I could get in and out of the external and internal doors unaided. I could get round the whole place in my wheelchair, and things could be improved further in places with different positioning of furniture. There was also nothing obvious to be concerned about when navigating upright using my frame. The kitchen and bathroom were lovely (the bathroom is a little narrow with the wheelchair, but doable), and even the decor elsewhere was gorgeous. I could see how it could work for me. It's in a nice residential area, with proper family houses around. There's a shop not too far away (although too far for me to get without help at the moment, but I wouldn't go out unaccompanied at the moment anyway!).
As you can tell, I fell a little bit in love with it.. I made a shared ownership offer with my parents, and the offer has been accepted!!🙊🎉🎉🎉 I'm a little bit (very) overexcited about the whole thing! I do fully expect (some?) fear to set in closer to the time, but for now, it's just awesome..
Obviously living alone, independently from my parents, will mean I require more formal support and care. I've been referred for an NHS continuing healthcare assessment (again..), and have filled in a checklist with the ward, and everyone in hospital thinks I should qualify. It's basically a way to get more comprehensive support funded for those with significant/complex 'health needs' rather than 'social needs'. As my care needs directly result from various different conditions, this should definitely apply, but there has to be a big meeting where I (and those supporting me) argue my eligibility. So we'll see. If not, care will be funded through social services, either through an agency or direct payments..
Before I went into hospital, I would've said I didn't feel able to accept outside care. But now, I do. I won't pretend it's easy for me, because it isn't, and accepting it without family around to step in when I have seizures in particular will be hard. But I feel I want to give this a go. I need to move forward, and I don't want my PTSD or seizures to hold me back any more than they already have.
I'm now home from hospital and having transitional care. The carers that have been coming in have been really really great, and have always turned up as arranged which has been a big relief having been severely let down by other services in the past! My independence is slowly growing. There are still things I don't feel safe to attempt. And still (most) things that require close supervision. And still things that I can't do yet. But I'm getting there..
Some days I've been really poorly, particularly with my CFS and non-epileptic seizures. I had a bad cold/flu towards the end of my hospital stay, and some difficulty getting my meds right too, which threw my body off quite significantly. It's been shutting down a bit at times, and I've been incredibly tired. But hopefully, things will pick up in not too long. It's just a bit tough just now trying to move forward with my rehab while my body is kicking up quite a lot of fuss at times. Plus I've been overdoing things a bit going out shopping for things for my flat at times too, so it's hard to stay within my limits with everything going on!
Really though, I can't complain much at my body just at the moment. I made awesome progress in hospital, and my body proved that it does have some resilience. It knows how to bite back, but it does rally well, and it coped ok-ish with me testing its limits. My pain, particularly my back pain, has been tricky at times, but given the physio sessions and all the MANY seizures in hospital, it could've been a lot worse. My body tolerated 'upright' fairly well by the end of my stay, and that's something I'm so incredibly grateful about, as I wasn't sure I'd ever stand again without triggering a seizure, and I have!
The non-epileptic seizures are an ongoing problem, and my body still enters a seizure state fairly on a whim. But I get some warning most of the time at the moment- not a lot, but some. Despite my seizures mostly being dealt with really wonderfully in hospital, there were still a few issues.. There was one staff member in particular who said/did a few really triggering things during them. Nothing truly horrendous, but not easy for me.. And I just find seizures (particularly in hospital) fairly difficult in terms of my PTSD anyway..
One of the doctors triggered my PTSD badly a few times (used the term that was used repeatedly the time that I was treated abusively at a different hospital, which caused me to think I was being disbelieved and misunderstood, and he got me to lie on my stomach for part of an examination, which is the position I was hurt in- so they did nothing actually wrong, but majorly triggering for me due to past experiences), and I became very scared of him at one stage, which was difficult. I actually tried to get my doctor changed because of it. But with a lot of reassurance about him from multiple other members of staff (who all said he was a great doctor and reassured me that he believed me and had some understanding of and experience with my condition), and some more reassuring exchanges with him, I finally got to the point where I felt quite comfortable with him, and no longer freaked out when he entered the room. I felt a bit bad about it, because I realise now that he never actually did anything wrong to make me fear him, but getting PTSD to listen to reason is hard!
I got to the point where I could feel comfortable and laugh and joke with quite a lot of the staff by the end of my stay. A few days into my stay, my PTSD was so severe that I was so scared of the staff that I very nearly discharged myself. I don't think I'll ever be able to put into words quite how terrifying it all was at one stage. I still have PTSD. I still have symptoms and some trust issues. But it shows that I can learn to trust. It shows that I can reach a point where I feel comfortable with people- even healthcare professionals. I still like someone with me when I see doctors/physios etc, but I'm coping so much better just at the moment, particularly when I see them in my own home.
I haven't had a single full-on panic attack since being discharged from hospital just over 4 weeks ago, and possibly a while before that.. And I don't feel like I'll have more now that I'm home, away from the hospital environment that badly triggers my PTSD. My stress levels are lower, and my social anxiety isn't so intense. Psychologist sessions might potentially trigger them, but other than that, I hope to remain panic attack free. They're not something I've really suffered from before (I had my first 2 not long before admission, related to a change in medication), and I hope they're not something that will persist into my future. In a way I'm glad I'd had the 2 at home, because otherwise those in hospital would've been more frightening due to the added unfamiliarity factor.. I do feel like they're a short-term issue in my past now, so I hope I'm right!
My depression has lifted a lot compared with the state I was in at one point, and I'm able to look to the future at the moment, which is so nice. My anxiety/agitation levels at night are my most difficult ongoing mental health issue, and the effect on my sleep is a serious concern (as tiredness can lead to increased seizures), but that's something I'm working on. I've started a new technique with my health psychologist which we're going to use to hopefully help my PTSD, so I'm hoping that will help.
It's so weird how significant my mental health is in terms of my overall health these days. It can mess things up massively, so it's something I have to be mindful of. It's not something that I have full control of, and at times it dictates things a lot, and plays a big part in setting me back. So I have to look after it, and care for my mind as well as my body as best I can. It's weird, because for years I lived with lots of physical symptoms without battling any significant mental health symptoms, so juggling both now is tricky at times..
My 'insides' are also not something I've had to think much about in the past, but are something I have recently had to consider. My bladder and bowels were a complete and utter nightmare a lot of the time in hospital. I was regularly going into dangerous levels of urine retention (1 litre a couple of times- 1kg of fluid overfilling your bladder is incredibly painful!) and had an unbelievable number of bladder scans ('Suzie the scanner' and I became close friends- I think that machine practically lived in my room for a while!). Trying to get my meds right to regulate my bowels was also very tricky. I left hospital relying on intermittent self-catheterisation as needed when I went into acute retention. Thankfully things seem to have settled massively since discharge/over the last few weeks, so I'm hopeful those problems are now behind me.. Such a relief!
Obviously my main reason for being in hospital was working on my walking with physio. It went really well. I was in for 6 weeks and a day. I went from completely unable to stand, to waking a short way down the corridor with my 2-wheel frame (to be greeted by applause from various, some slightly teary-eyed, members of staff). I'm delighted! I still have to be very very careful not to overdo it, my ankles struggle, and I can really feel my muscles after, but who cares- I can walk!! And a matter of weeks ago I wasn't sure I'd ever be able to say that again..
I'm glad the physios were brave and calm and persisted through triggering some pretty awful symptoms at times initially! It would've been so easy for them to decide that me walking again was not going to be feasible or possible when I was ending up barely conscious and seizing and pretty unwell, but my progress gave us all hope (even when it was just a few more seconds upright before seizing, or the stand being more controlled), and I'm so so glad everyone gave me that chance and stuck by me! My walking is becoming smoother and more automated on good days, and there aren't the ridiculous number of confused signals going on that used to cause my legs to shake horrendously but not go where planned. I can take my weight through my legs now rather than holding all my weight through my arms like I was initially. At the end of my stay, I took a few (dodgy) steps just holding onto the arm of my physio (i.e. No frame!), so I think once I get stronger and my balance improves, getting rid of the frame will be viable, but for now that's a way off..!
I've been practicing walking about twice per day with my reablement carers, and have also seen physios a few times. This week I went to a local hospital for my physio session so that we'd have access to equipment. I took my very, very first step UP in over a year!!! It was so exciting! I had a bar to hold onto one side and a physio holding my arm the other, plus a physio the other side of the bar too, and I needed a bit of help from both of them to get me up, but it was a good start! I did up and down from a block about 1" thick and then a few times over one that was about 2". We also tried me with an orthotic device that holds the front of your foot up with elastic to prevent foot drop, so that helped a lot with steps up too. We're going to see how things go, but I might end up with one of those for my left foot.
Being able to walk a bit and able to stand again will make such a huge difference to my quality of life, and it has really boosted my confidence in my ability to make progress, and given me the drive to have a go at doing things again that have seemed impossible! My brain has learned to communicate with my legs again without just shutting down, so if it can do that, there's no reason why it can't relearn other things too.. I think my brain has a lot of language lessons with my body to come 😉
My rehab admission was the most transformative 6 weeks of my life, for sure. It was incredibly hard, and at times felt mentally unbearable, but I'm so glad the ward stuck by me and the staff were so awesome, I'm glad I persevered despite my initial utter terror, and so grateful I got the results I wanted as an amazing reward! Since my admission, things have continued to be a challenge and up and down, but I can see progress, and can do things I didn't dream could be possible in such a relatively short space of time, so I'm delighted. My body is currently still a real mess, but at least things are finally moving in the right direction!
Doing well with my frame, and so is my dog! (Coolest walking frame you've ever seen?😉)