Thursday, 27 October 2016

Getting There! Inpatient Neurorehabilitation for FND Weeks 4-5

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 weeks and feel like I've made a lot of progress towards getting my head straight. My PTSD in particular is complex, and I don't know how things will be when I'm discharged. I have a feeling there are going to be some memories that come back to me that are currently tucked away, but for now, things are ok, and right now, I don't feel that anything here is aggravating the problem further.

The staff here are wonderful. I can see how some of the patients here must test their patience, but most have more than enough patience to deal with even the trickiest of patients. At times, with one or two members of staff, their frustration is apparent, and that scares me because of my past experiences, but the overwhelming majority of the staff an overwhelming majority of the time are incredible. I was a complete bag of nerves when I arrived and my head was all over the place; I needed reassurance and patience and space and company, and they did an amazing job with me. I've learned to trust again. Yes, it still takes (quite a lot of..) time, and it crumbles with the tiniest niggle, but there are staff here that I now truly trust. I honestly never thought I'd trust a nurse again- now there are some that I really like and comfortably allow to do pretty much anything to me!

It's just as well that I'm now able to cope with healthcare professionals doing all sorts, because, well, I've needed it.. Let's just say that my bladder and bowels have been playing me up.. My body seems to be trying to hoard everything that goes in me, which isn't a great strategy. But the doctors and nurses and I are getting it sorted, it's just involving some suppositories and scans and the odd intermittent catheter- hopefully all short-term! They're the kind of problems that you just hope never affect you, because (particularly as a young adult) they're awkward and embarrassing, but being sat down all the time, plus my actual FND, have a massive tendency to cause these sort of problems (practically everyone here has them due to immobility/neuro issues), so they're 'normal' here, and you just have to learn to discuss stuff that you're not used to discussing! I'm actually coping ok with it all and we're getting there, but I was classed 'not medically fit for discharge' as a result of these issues (after a discharge date being given of this Wednesday- 12/10/16- at one stage), so that's been delayed to next week.

The delay in discharge has meant I've benefitted from a bit more time with the physios here, which has been fab! I'm now at the stage where I can walk about 10 metres I'd say, with a wheelchair behind, and my walking frame in front, plus someone right by me for if I can't correct my balance or I go into a seizure stood up. I have to take it a step at a time, my balance needs improvement and I have difficulty getting my left foot flat and my heels on the floor, and struggle with pain from ankle instability from hypermobility and immobility, but, as everyone keeps reminding me:  having been off my feet for a whole year, and with limited mobility for years before that, it's early days. I know that and I'm absolutely delighted by the progress I have made already and I really can see an improvement most days, but it doesn't stop me wanting to run before I can walk!!

Non-epileptic seizures are still occurring fairly frequently, and they're debilitating for a bit when they do, but thankfully they're not particularly hampering physio progress and physio isn't the massive trigger that it once was, and I'm getting better at knowing the signs that I shouldn't push any further, so they're a big problem, but they're currently thankfully not too problematic in terms of my overall rehabilitation..

When I'm discharged from here, I'm going to have ongoing support from a therapy team linked to the ward, and from a team that help regain independence at home. They will help me to find ways to use my new skills, and regain/develop others, so that I can be as independent as possible. The district nurse is also going to be made aware of me. I'm a bit scared about all the new people who are going to be working with me after I'm discharged, but it's just going to take some getting used to, and I know they're all involved to help me improve and reach my potential. It's just hard. And it'll take time and there'll be an adjustment period, but hopefully I'll reach the same point with the new people as I've reached here, and hopefully being in a home environment will help to keep my stress levels lower than when I arrived here..

There has been quite a lot of turnover in terms of other beds/patients just recently, and most that helped me to settle in and who inspired me in so many ways have now moved on, which is a real shame, but I'm very pleased for them.

There is still one patient here who has helped me right from the start. Our problems are different, but our battles are similar, and I really value her friendship and support through all this.. We celebrate one another's successes, and it helps to know she's just the other side of the ward if I do need a friendly ear.

My parents have been an amazing support, and their daily visits have kept me (mostly) sane. Social media and outside-world friends have also helped keep me going.. One day 2 of my closest uni friends arrived to take me out, only to find me barely conscious, so we sat round in my room, and ordered takeaway pizzas to the hospital- you can't get friends better than that! Another amazing friend dropped everything and came to see me at short notice when I really needed her, and let me pick her brains about all sorts (she works at the hospital and has expertise that I needed at the time).. I appreciate the friends I can be real with, and moan about the hard stuff, and joke with about things that most would find difficult to joke about..

Another thing that has helped me through is dogs. My own dog, our Pets as Therapy dog, and a puppy. Between the 3 of them, they've really kept me going. There's nothing quite like a cuddle with a dog to get you through the toughest of times!

I can't wait to get home to my own dog, but my parents' home isn't where I want to be forever, and my time here has inspired me to look to the future. I'm thinking of buying a little flat that would make life a lot easier, that I could adapt to suit my needs as necessary, and that will enable me to have as much independence as possible. I will still be reliant on support and 'care'/supervision, at least initially, but it would be a step towards getting my life on track and feeling that I have a place of my own. Age is just a number, but I do feel that at 24, I don't want to be at home reliant on care from mum and dad, and I want to start to see my life coming together and it feels right. I don't know whether it'll all fall into place or not, but I'm pleased it's even something I feel able to contemplate, and relieved that I feel able to see a future for myself!

Overall things are going well. There are blips and off days and days where my particular medical issues or seizures etc seem to be absolutely dominating, but I'm making fantastic progress! In 5 weeks I've gone from completely unable to stand to able to walk 10 metres with a frame a bit dodgily, so I couldn't ask for more really! I didn't know whether my body would ever tolerate upright again, but now I feel able to take some weight through my legs during transfers. I'm able to stand to my frame with only 1 person there for safety. Standing for several minutes is no longer the utterly incredible achievement it was a couple of weeks ago. Now, my first step feels ages ago. My feet have started to try to cooperate with my brain.

Right now, I feel incredibly lucky as well as very unlucky, very hopeful as well as very aware of ongoing challenges, very proud as well as very humble, very confident as well as very anxious etc etc. With all these emotions, and many many more, it's a wonder I don't burst!!

..but no longer absolutely 100% on wheels..!😉🙊🎉 ..because some of the time I'm doing this: