Friday, 30 September 2016

A step in the right direction! Inpatient Neurorehabilitation for FND Weeks 1-3

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 staff were so lovely. I waited in 'the day room' initially, with my parents and a patient who was being discharged that day. I felt surprisingly ok about it all. I answered all of the admission questions without any real level of distress. I coped fairly ok with the examination to assess me. I was chatting and getting on fine with the ward staff. When my parents were leaving, my mum gave me a hug and a kiss and I knew she'd be apprehensive about leaving me, so I said 'I'm going to be ok, they'll look after me here', and I meant it!

Unfortunately that night, closing my eyes to go to sleep triggered my medical/hospital-related PTSD to a really horrendous extent.. My stress/anxiety/complete-and-utter-terror levels didn't settle. It was constant, for days and days. I was startled any time anyone came near me, I couldn't cope with being alone.. I was a real mess. At times my 'extreme anxiety state' was completely debilitating, I was verging on psychotic because of my stress levels, I was restless, I could barely sleep at all, I was having A LOT of seizures and body flashbacks, and my movement disorder was worse. The only time I got relief to an extent was when my family was with me, or 1 or 2 fellow patients.

Honestly, that first week was practically unbearable, despite being surrounded by lovely caring staff and the support of various mental health professionals. I knew logically that I had nothing to worry about and no evidence that anything bad was going to happen to me, but my body was responding in a way that was entirely outside of my control. The only thing that kept me there rather than discharging myself was knowing that if I left, my PTSD would be even worse, I would've just added to my negative experiences in hospitals, and I'd never again get a comparable opportunity to regain my mobility and independence (and would possibly never tolerate attending a hospital ever again). I felt trapped in a way, because although my mental health was making things basically unbearable, I didn't feel that discharging myself was a viable option, given how impossible it had become to cope with me at home, and given how difficult I felt my mental health would be if I left in an even worse state, with no real hope for improvement in my physical health.

Thankfully, with the help of changes to my medication, time, increasing levels of trust in the staff, and reducing levels of fear, my mental health became significantly more manageable. It's still not perfect, but given the experiences I've had in hospital, and the severity of PTSD that has resulted, I think it would be unrealistic to think perfect is possible just at the moment, particularly when I also take into consideration the level of uncertainty over what can be achieved with me during my time here, and also the element of depression related to my level of disability. My mental health is going to be an additional challenge during this process, at least for a little while.. But it's bearable now. I can cope and engage with everyone here and focus on making progress.

Moving from mental to physical health, things are going well. I'd maybe go as far as to say really well, but it's hard to judge when I've got nothing to judge against.. All the staff are saying I'm doing incredibly well, but maybe they say that to everyone to keep them motivated, I don't know 😄

Occupational therapy has been going alright- I've played a few games and helped a bit to make a cup of tea and been on a trip to the supermarket with a couple of staff members- but the really exciting progress so far has been in physio to be honest.

On the day I was admitted, I couldn't stand, and hadn't stood up fully once since January. On the day after I was admitted, we tried in physio and I got 3/4 of the way up, on a piece of equipment where you can pull yourself up to a large extent with your arms, and that triggered a seizure. The following session we tilt tabled me to a standing position passively, but I didn't last long before I started to feel unwell and we had to flatten it. Then I stood myself up from a raised seated position using a 'Sara Steady' where you pull yourself up with your arms and your knees are blocked. Initially it was absolutely momentary. Then I managed to stay up for a very quick count of 3. We built on that and then I made the leap to a frame.

Moving to the Zimmer frame meant pushing down with my arms rather than pulling on a bar, and standing with no knee support (apart from from physios initially). I then started standing to the frame for increasing lengths of time, eventually exceeding 3 minutes on one occasion! They were timing my attempts with a stopwatch to begin with, and the improvements were great. There were obviously off days and symptoms and seizures along the way, but that was not unexpected.

The next stage was thinking about moving hands/looking around/shuffling feet while upright. That wasn't easy, as more thinking/more complex movements etc gives more chance for my brain to mess up messages. And it did exactly that quite often initially. I had to use seizure management strategies or stop attempts at things quite frequently. And there were quite a lot of flops involved, some more drastic and some more responsive than others. But I made progress, with the help and support (sometimes literal physical support!) of my physiotherapists.

Today, I started the next phase. Today, I swapped to a frame with 2 wheels on the front. I took my first actual step. MY FIRST STEP SINCE NOVEMBER.🎉 Yeah, I completely lost my balance. Yeah, I had to be caught/held up to an extent by my physios. Yeah, the proper step was with my better leg. But I got that foot to leave the floor and move forward under my own control. That's massive for me. There's a hell of a lot still to work on. And it's not reliable or repeatable in a single session just yet really. And it's certainly not safe without 2 physios hovering ready to catch and rescue me. But I stepped! Yay!☺️

Next week, I will be starting with new physiotherapists (due to rotation of the staff), which will be really hard for me, mostly because there's the real risk of triggering non-epileptic seizures during physio, and having a seizure accompanied only by healthcare professionals I haven't built up trust with yet is probably my biggest fear.. Luckily, a senior physio that I do know is going to be here on Monday and Tuesday, so I've asked for her to be in on Monday's session for sure, and that's been almost promised (unless she's off ill basically!). If I'm at all worried about seizures with the new ladies initially, I'll ask them to get a member of staff that I know well ASAP if anything does happen, and I'm sure they'll understand given that they will be aware of my 'history', and it will only be initially until I've got to know them more. Hopefully I'll continue to make really good progress with the new physios!

I'm feeling tired now, so I think I'll leave this post there, as I don't think there's anything else I want to mention on here just now. But there are really promising signs that I'll regain a better level of function, and that's given me a lot of much-needed hope!

I'd already taken lots of metaphorical ones, but today I've taken a literal 'step in the right direction', and that feels pretty awesome!!

Me stood up 🎉

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