coldutewarmheart

I wrote this on 14th of October, but never got round to publishing then, so am putting it up now.. I've now been discharged (and things are going fairly well), so I'll try to put another more-up-to-date update up soon ☺️ ---- These last couple of weeks have been amazing and awful and difficult and hopeful and pretty much every other emotion possible! Mentally I'm doing so so so much better. My PTSD has settled. In these last few days I've got to the stage where I feel comfortable and confident with a lot of members of staff, which is amazing. Yeah, I'm still anxious. Yes, I still struggle to envisage my future. But it feels like I have options and there are possibilities and I can build a worthwhile and satisfying life. In comparison to where my head was prior to admission, this is all incredible. I don't pretend I'm 'all better' mentally, because I'm not and I do still have a lot of issues, *but* I've come a really long way in these last few...

On the 8th of September, I was admitted to a neurorehabilitation ward. I had no idea how well I'd cope- physically or mentally. In the month or so prior to admission, I went downhill a lot. And I mean A LOT. To the point where I was questioning the need to accept a hoist or go into a nursing home short-term. It was that bad. I was having non-epileptic seizures almost daily, that were lasting hours, and was feeling deathly. I even ended up in an ambulance to A&E at one point due to spending all day barely conscious. When I got the call to say my admission was imminent rather than several months away, I was shocked, but actually relieved more than anything. I knew I desperately needed the help, and the situation had become so difficult with me at home that something had to change urgently, so it felt like it had come at just the right time. I felt ready and keen, while also fully aware that it was going to be physically and mentally challenging.. The first day, I arrived and the ...

I found out on Wednesday that I'm going to be admitted into hospital again. Shocked is an understatement. I wasn't expecting it at all. Not one bit. Even now it doesn't feel real. I'd gone to hospital for an outpatient appointment in a spasticity clinic with a rehabilitation medicine consultant. I thought it was a case of assessing whether I had spasticity and if so deciding whether to go down the route of Botox injections or muscle relaxants. I thought that was as drastic as it was going to get.. I arrived at my appointment to be greeted by the consultant, another doctor, and a neuro-physio. As some of you know, I have medical/post-hospitalisation PTSD, following some traumatic experiences and an incident where I was treated  abusively by 2 members of staff. Hospitals and I don't mix well, so I was pretty anxious. She started taking a bit of history about how I ended up how I am. It's always hard to know where to start given that I've had chronic conditions...

Today is Functional Neurological Disorder awareness day. This time last year, I don't think I even knew what FND was. How things have changed.. This time last year, I had already had a stammer many months- the only symptom that pointed to FND prior to my health well and truly collapsing due to this disorder in October 2015. This time last year, a family member had recently had their first recognised seizure- the seizure that would lead to their FND diagnosis. FND was creeping into our lives, but little did we know the devastating impact it would have in the months to come. FND has caused some of the most distressing, horrendous symptoms and experiences I have ever been through. Some are so awful that they haunt me and I feel unable to discuss them openly. It's hard to write about all this, so tempting to let this awareness day pass without speaking out, but if I don't create awareness among the people I know, then who will? My journey with FND started innocently enough- fal...

Advanced warning - this post is long ! Fellow fatigued people in particular- you may not want to read all at once! In the past I've shared all my medical battles and worries on here very openly. In the past, things have gone quiet only when I was too ill to write, too busy to, or there was little change so little to share. This time it's been a bit different. My long silence hasn't really been entirely for any of those reasons. The truth is that I needed some time and space to process things and understand things privately. When I received my first chronic illness diagnosis, it was many months before I talked openly about it with anyone; this time I was having to have daily discussions with doctors for months and was having to communicate with lots of different people fairly constantly. I couldn't, and didn't want to, hide my illness in the same way as I did back in 2010, but there were certain elements that I didn't want to share publicly/openly. I wanted the p...