Langsung ke konten utama

Postingan

FND Awareness Day 2017

Functional Neurological Disorder is a condition where your brain and body lose the ability to communicate. It's like having crossed wires. Your brain is talking in English, but your body only understands French, causing a lot of miscommunication. It's a complicated condition, and can be scary to suffer from, and frightening to watch someone battle.
People with FND can suffer from many, many different symptoms. These include: Weakness, Paralysis, Seizures (non-epileptic), Bladder and Bowel dysfunction, Co-ordination or Dexterity difficulties, Speech problems, Chronic Pain, Cognitive changes, Gait & Balance problems, Headaches & Migraines, Involuntary Movements, Sensory changes, Sleep disturbances and Visual changes. Basically anything that involves the nervous system can go wrong in FND.
FND is still fairly poorly understood, and patients don't always receive the medical help and support that they need and deserve. It can be a battle to access all the services needed …
Postingan terbaru

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 wa…

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, partic…

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 …

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..

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 ye…

4 months on- grateful but glum...

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..
The…