Thursday, 23 February 2017

Update 23/2/17 - ISTDP/mental health, my flat and physio etc

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

My mental health story for Time to Talk Day

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

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..