Sunday, 20 November 2016

I'm Out! Inpatient Neurorehabilitation for FND week 6 and post-discharge

Starting off with a life rather than health-related update, but it's one I just had to share!


The day after I wrote the previous post, I went to look at 2 flats in the outskirts of one of the towns my parents live near. The first was an absolute flop. It was advertised as having a lift, and we told the estate agent that I was a wheelchair user (when I say 'we', I actually mean 'my mum'- I don't do phones..haha). However, we arrived to be greeted by an estate agent who questioned whether we knew the lift didn't go to the actual flat... Clearly not. I was asked whether I could climb the 10 steps- I wish! What sort of idiot thinks it's a good idea to put a lift in that only stops on the landings halfway between floors?! So that was a no-go, and pointed out issues I hadn't even thought of, like the fact all the access doors were too heavy for me to even open.. Not a great start.


But then we looked around a second place. A ground floor apartment- so no lift involved!! I could get in and out of the external and internal doors unaided. I could get round the whole place in my wheelchair, and things could be improved further in places with different positioning of furniture. There was also nothing obvious to be concerned about when navigating upright using my frame. The kitchen and bathroom were lovely (the bathroom is a little narrow with the wheelchair, but doable), and even the decor elsewhere was gorgeous. I could see how it could work for me. It's in a nice residential area, with proper family houses around. There's a shop not too far away (although too far for me to get without help at the moment, but I wouldn't go out unaccompanied at the moment anyway!).


As you can tell, I fell a little bit in love with it.. I made a shared ownership offer with my parents, and the offer has been accepted!!🙊🎉🎉🎉 I'm a little bit (very) overexcited about the whole thing! I do fully expect (some?) fear to set in closer to the time, but for now, it's just awesome..


Obviously living alone, independently from my parents, will mean I require more formal support and care. I've been referred for an NHS continuing healthcare assessment (again..), and have filled in a checklist with the ward, and everyone in hospital thinks I should qualify. It's basically a way to get more comprehensive support funded for those with significant/complex 'health needs' rather than 'social needs'. As my care needs directly result from various different conditions, this should definitely apply, but there has to be a big meeting where I (and those supporting me) argue my eligibility. So we'll see. If not, care will be funded through social services, either through an agency or direct payments..


Before I went into hospital, I would've said I didn't feel able to accept outside care. But now, I do. I won't pretend it's easy for me, because it isn't, and accepting it without family around to step in when I have seizures in particular will be hard. But I feel I want to give this a go. I need to move forward, and I don't want my PTSD or seizures to hold me back any more than they already have.


I'm now home from hospital and having transitional care. The carers that have been coming in have been really really great, and have always turned up as arranged which has been a big relief having been severely let down by other services in the past! My independence is slowly growing. There are still things I don't feel safe to attempt. And still (most) things that require close supervision. And still things that I can't do yet. But I'm getting there..


Some days I've been really poorly, particularly with my CFS and non-epileptic seizures. I had a bad cold/flu towards the end of my hospital stay, and some difficulty getting my meds right too, which threw my body off quite significantly. It's been shutting down a bit at times, and I've been incredibly tired. But hopefully, things will pick up in not too long. It's just a bit tough just now trying to move forward with my rehab while my body is kicking up quite a lot of fuss at times. Plus I've been overdoing things a bit going out shopping for things for my flat at times too, so it's hard to stay within my limits with everything going on!


Really though, I can't complain much at my body just at the moment. I made awesome progress in hospital, and my body proved that it does have some resilience. It knows how to bite back, but it does rally well, and it coped ok-ish with me testing its limits. My pain, particularly my back pain, has been tricky at times, but given the physio sessions and all the MANY seizures in hospital, it could've been a lot worse. My body tolerated 'upright' fairly well by the end of my stay, and that's something I'm so incredibly grateful about, as I wasn't sure I'd ever stand again without triggering a seizure, and I have!


The non-epileptic seizures are an ongoing problem, and my body still enters a seizure state fairly on a whim. But I get some warning most of the time at the moment- not a lot, but some. Despite my seizures mostly being dealt with really wonderfully in hospital, there were still a few issues.. There was one staff member in particular who said/did a few really triggering things during them. Nothing truly horrendous, but not easy for me.. And I just find seizures (particularly in hospital) fairly difficult in terms of my PTSD anyway..


One of the doctors triggered my PTSD badly a few times (used the term that was used repeatedly the time that I was treated abusively at a different hospital, which caused me to think I was being disbelieved and misunderstood, and he got me to lie on my stomach for part of an examination, which is the position I was hurt in- so they did nothing actually wrong, but majorly triggering for me due to past experiences), and I became very scared of him at one stage, which was difficult. I actually tried to get my doctor changed because of it. But with a lot of reassurance about him from multiple other members of staff (who all said he was a great doctor and reassured me that he believed me and had some understanding of and experience with my condition), and some more reassuring exchanges with him, I finally got to the point where I felt quite comfortable with him, and no longer freaked out when he entered the room. I felt a bit bad about it, because I realise now that he never actually did anything wrong to make me fear him, but getting PTSD to listen to reason is hard!


I got to the point where I could feel comfortable and laugh and joke with quite a lot of the staff by the end of my stay. A few days into my stay, my PTSD was so severe that I was so scared of the staff that I very nearly discharged myself. I don't think I'll ever be able to put into words quite how terrifying it all was at one stage. I still have PTSD. I still have symptoms and some trust issues. But it shows that I can learn to trust. It shows that I can reach a point where I feel comfortable with people- even healthcare professionals. I still like someone with me when I see doctors/physios etc, but I'm coping so much better just at the moment, particularly when I see them in my own home.


I haven't had a single full-on panic attack since being discharged from hospital just over 4 weeks ago, and possibly a while before that.. And I don't feel like I'll have more now that I'm home, away from the hospital environment that badly triggers my PTSD. My stress levels are lower, and my social anxiety isn't so intense. Psychologist sessions might potentially trigger them, but other than that, I hope to remain panic attack free. They're not something I've really suffered from before (I had my first 2 not long before admission, related to a change in medication), and I hope they're not something that will persist into my future. In a way I'm glad I'd had the 2 at home, because otherwise those in hospital would've been more frightening due to the added unfamiliarity factor.. I do feel like they're a short-term issue in my past now, so I hope I'm right!


My depression has lifted a lot compared with the state I was in at one point, and I'm able to look to the future at the moment, which is so nice. My anxiety/agitation levels at night are my most difficult ongoing mental health issue, and the effect on my sleep is a serious concern (as tiredness can lead to increased seizures), but that's something I'm working on. I've started a new technique with my health psychologist which we're going to use to hopefully help my PTSD, so I'm hoping that will help.


It's so weird how significant my mental health is in terms of my overall health these days. It can mess things up massively, so it's something I have to be mindful of. It's not something that I have full control of, and at times it dictates things a lot, and plays a big part in setting me back. So I have to look after it, and care for my mind as well as my body as best I can. It's weird, because for years I lived with lots of physical symptoms without battling any significant mental health symptoms, so juggling both now is tricky at times..


My 'insides' are also not something I've had to think much about in the past, but are something I have recently had to consider. My bladder and bowels were a complete and utter nightmare a lot of the time in hospital. I was regularly going into dangerous levels of urine retention (1 litre a couple of times- 1kg of fluid overfilling your bladder is incredibly painful!) and had an unbelievable number of bladder scans ('Suzie the scanner' and I became close friends- I think that machine practically lived in my room for a while!). Trying to get my meds right to regulate my bowels was also very tricky. I left hospital relying on intermittent self-catheterisation as needed when I went into acute retention. Thankfully things seem to have settled massively since discharge/over the last few weeks, so I'm hopeful those problems are now behind me.. Such a relief!


Obviously my main reason for being in hospital was working on my walking with physio. It went really well. I was in for 6 weeks and a day. I went from completely unable to stand, to waking a short way down the corridor with my 2-wheel frame (to be greeted by applause from various, some slightly teary-eyed, members of staff). I'm delighted! I still have to be very very careful not to overdo it, my ankles struggle, and I can really feel my muscles after, but who cares- I can walk!! And a matter of weeks ago I wasn't sure I'd ever be able to say that again..


I'm glad the physios were brave and calm and persisted through triggering some pretty awful symptoms at times initially! It would've been so easy for them to decide that me walking again was not going to be feasible or possible when I was ending up barely conscious and seizing and pretty unwell, but my progress gave us all hope (even when it was just a few more seconds upright before seizing, or the stand being more controlled), and I'm so so glad everyone gave me that chance and stuck by me! My walking is becoming smoother and more automated on good days, and there aren't the ridiculous number of confused signals going on that used to cause my legs to shake horrendously but not go where planned. I can take my weight through my legs now rather than holding all my weight through my arms like I was initially. At the end of my stay, I took a few (dodgy) steps just holding onto the arm of my physio (i.e. No frame!), so I think once I get stronger and my balance improves, getting rid of the frame will be viable, but for now that's a way off..!


I've been practicing walking about twice per day with my reablement carers, and have also seen physios a few times. This week I went to a local hospital for my physio session so that we'd have access to equipment. I took my very, very first step UP in over a year!!! It was so exciting! I had a bar to hold onto one side and a physio holding my arm the other, plus a physio the other side of the bar too, and I needed a bit of help from both of them to get me up, but it was a good start! I did up and down from a block about 1" thick and then a few times over one that was about 2". We also tried me with an orthotic device that holds the front of your foot up with elastic to prevent foot drop, so that helped a lot with steps up too. We're going to see how things go, but I might end up with one of those for my left foot.


Being able to walk a bit and able to stand again will make such a huge difference to my quality of life, and it has really boosted my confidence in my ability to make progress, and given me the drive to have a go at doing things again that have seemed impossible! My brain has learned to communicate with my legs again without just shutting down, so if it can do that, there's no reason why it can't relearn other things too.. I think my brain has a lot of language lessons with my body to come 😉


My rehab admission was the most transformative 6 weeks of my life, for sure. It was incredibly hard, and at times felt mentally unbearable, but I'm so glad the ward stuck by me and the staff were so awesome, I'm glad I persevered despite my initial utter terror, and so grateful I got the results I wanted as an amazing reward! Since my admission, things have continued to be a challenge and up and down, but I can see progress, and can do things I didn't dream could be possible in such a relatively short space of time, so I'm delighted. My body is currently still a real mess, but at least things are finally moving in the right direction!



Doing well with my frame, and so is my dog! (Coolest walking frame you've ever seen?😉)

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 ☺️
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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:

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 🎉

Friday, 12 August 2016

Sick of seizures..!

It's been a while since I've updated on here about everything.. I last posted on 15th July, when I'd recently found out about my impending return to hospital. Those of you who follow my Instagram (@Jess_ME_CFS), Twitter (same) or Facebook (fb.com/jesscfs) will know both that I'm not in hospital yet, and I've had a bit of a rough time just recently..

Let's start on a more positive note. Last time I did an update post, I was about to head off on a week's holiday. Despite not sleeping well, and a day where I was unwell, and another where a seizure interfered quite a lot, overall, I coped well, and had a lovely time. It was a much-needed reminder that I can still experience a degree of normality despite everything. And knowing I was going to be returning to hospital in the not too distant future just made it all seem sweeter in a way. It was lovely to spend some nice time with my parents and a couple of close family friends, and I even met up with a friend who also battles chronic health problems while I was away, which gave me a much-needed chance to chat things through with someone who 'gets it' to a large extent.

While away, on the day I was already unwell, I was contacted about 2 things that were difficult. The first was the hospital that I complained to after a very traumatic experience, wanting to know whether I'd been happy with their response. I told them that I found their response incredibly insulting. I've had a few calls since (from the safeguarding social worker) and I'm meant to be contacting patient relations again on their advice, but just at the moment, I can't really deal with all that. My back pain is still awful though, and my PTSD is a challenge, so yeah- I'm still bitter about what was done to me to be honest, and frustrated/concerned that nothing seems to have been done to prevent a recurrence affecting another patient. The other was news from uni- wasn't completely unexpected, but disappointing. I think if I decide to blog about that, I'll do so some other time separately though.

Since getting back from holiday, it's been really quite stressful constantly waiting for the call to say the hospital have a bed for me. Obviously being hospitalised is something that's incredibly daunting for me, so jumping every time my phone goes off, and waking up each day wondering whether today's the day, is pretty rough. Just being nervous about that is probably throwing me off a bit really.

I'm struggling with my health in lots of ways just at the moment.

I've stopped my preventer inhaler for my asthma, because since a change to my medications (I think), it gives me a bad tremor. I can't deal with that on top of everything else. The worst that will happen is a return of my asthmatic cough really, which is already happening to an extent. I don't pretend asthma is something to mess with, and certainly wouldn't recommend anyone else changing their own meds, but I'd been forgetting it a lot accidentally (like, pretty much all the time), so knew I wasn't having an asthma flare-up as a result. My asthma is mostly related to allergies, and to an extent exertion. My allergies are fairly well controlled with antihistamines at the moment, and exertion is pretty non-existent, so should be fine. I'll discuss with the Drs when I'm in hospital, but I'm avoiding my GP for now.

I'm incredibly tired at the moment. Since changing my medication, I've been getting about 4 hours sleep per night, and that's been over a month now, so I think it's largely simply sleep deprivation. Even 'just' that can have a massive knock-on effect on other conditions though, particularly my CFS.

My exhaustion and CFS worsening has meant I've had some rough days with my N-E Seizures. After a few good months, it feels like a big step backwards, and a stark reminder of how fragile my situation is and how quickly things can spiral. In the space of 7 days, I've had 6 seizures, 1 more than I had in the whole of May, June and July put together. I've spent rather a lot of hours unresponsive, and many, many more with horrible seizure warning symptoms (all spotted in retrospect, as it's so hard to spot symptoms like drowsiness among everything else!) or recovering afterwards. On one of the days I came round after a 3 hour seizure and had just got to the point in the recovery period where I could speak and move all 4 limbs with a little strength and some control when I went back out again. So frustrating. It's been many months since I've had a day as bad as that. Since then, most days have been bad.. I still find the seizures, and the symptoms that surround them, very challenging. And it's always scary when you think you've got some level of control over something and then you're proven wrong. It seems like I can prevent a lot of the seizures that I get warning of, which tend to be ones with a significant psychogenic element (where something had severely triggered PTSD causing a sort of body flashback etc), whereas the ones where my body just physically gives up on me (due to exhaustion etc) just seem to come seemingly out of the blue, with no real chance to do anything to prevent them. Other than try to manage my conditions/symptoms better, which is easier said than done to be honest.

I was told my type of seizures do tend to change over time, and this had already been apparent in a few ways (like how they become far far longer), and now they seem to be involving very short (I think) episodes of complete unconsciousness. I've always been completely aware throughout before, just completely unable to respond. It doesn't make that much difference really, just feels a bit strange. It's like coming round from a dream, but into a state where I'm still not able to respond. I'm still aware throughout that I'm in a seizure and that I've had them before etc, I'm just aware that I'm no longer always fully 'with it' throughout, although most of the time I still am.

I hate seizures with a passion, and another symptom I really hate is my nausea. It's not to the extent that I want to go back on the mirtazapine, as I realise now that it made me feel horrendous, but I really miss the relief I got from it in terms of my nausea. I wonder whether I should've gone through with the referral to the specialist in gastroparesis for testing while I had the chance. I think that opportunity has been and gone now though, and I'm not sure a definitive gastroparesis diagnosis would change much anyway, plus I know why I made the decision I made at the time and fully understand why I had had enough of referrals and prodding and poking, and do kind of feel the same again now. Right now, I'm taking no medications for nausea, for the first time in years (for a variety of reasons- some have been deemed to risky for me now, others just don't work so seem pointless). I'm coping just about, and am managing to eat enough I think (to keep my weight safe), so hopefully it will all be ok, and it's absolutely great not to be having to take antiemetics. I'm nowhere near the situation I was in a few years back with serious threats of NJ tube feeding, and inability to eat with life-threatening weight, so I feel really lucky in that sense. It's still tough though. Thank goodness for mints and acupressure nausea bands!

I saw the CFS team again last week, and am so pleased to have them working with me. I hadn't seen their physio before, but she was as nice as I'd been assured she was, and it was good to discuss things with her. It also made me realise I really need to review all the basics of fatigue management.

She's hoping to do hydrotherapy with me, as she has access to a pool and in deep water I'd be able to practice standing and walking with only 10% of my weight going through my legs. She just needs to check that they have the equipment necessary to be able to get me out of the pool if I've had a seizure, as the hoist they normally use has a seat, but they won't be able to sit me up if I've had a seizure (I'd just flop), so they'd need to hoist me flat IF a seizure happens. Obviously before they can take me in the pool, both me and her need to agree that the situation will be safe whatever my body decides to do! Particularly as feeling unsafe can be triggering for me. The water is at about body temperature, so hot, so we'll also need to be wary in terms of my dysautonomia, as it could cause my blood pressure to drop a bit, but I think that's a 'see what happens' situation. I'm a bit of a nightmare patient really..

Other stuff in terms of physio involved discussions around hypermobility, which I've known was an issue (at least to an extent) for a while. A few different people have commented on it (particularly physios). I need to be careful with my joints is the long and short of it, and try to keep things mid-range rather than stretching things. Hypermobility is associated with lots of my other conditions and symptoms, so it's not a surprise. I still don't know whether I have full-blown EDS, but it would come as no great surprise, put it that way. CFS, dysautonomia and FND are all associated with EDS, and my joints popping in and out of position, easy bruising, skin hyperelasticity and joint pain all point to EDS being a possibility, so for now it's just something for me to be a bit aware of, and try to avoid hyperextending joints, although that's easier said than done with a movement disorder that causes my body to contort beyond my control. The hypermobility itself can lead to fatigue as it takes a lot more energy for the muscles to keep joints in the normal position due to joint laxity causing instability.

I'm going to try to think of a way to distract my brain when my arms and hands are spasming out of control/I get loads of involuntary movement. At home I tend to go on my phone or iPad, as my hands manage well with those, but my arms are a particular problem during medical appointments, and that's not a particularly useful strategy in those situations..! My medical professionals are mostly already aware that I'm scared of them/struggle to trust them, without me being rude sat on my phone on top, haha. I've also been given a few little things to do to try to work on my core stability, mostly to try to ultimately ease my back pain to an extent- although for now they do aggravate it. For now, we're not doing anything in terms of my legs, because everything triggers agonising spasms.

Physio is going to be such a fine balance. Causing a bit of pain in the pursuit of recovery is fine and completely necessary, but I need to be careful not to push things beyond what my body can cope with, particularly given the added complication of seizures to avoid these days too. I need to avoid boom and bust and relapses, while also trying to regain some function.

After seeing the physio, I saw the neuropsychologist. A lot of that was discussing thoughts around where I'm at, why it's all come about, and how to move forward. I know I pushed my body to breaking point (along with help from a few other conditions/infection/possible reaction), and I recognise that. I realise that I don't always know when to stop. I know my body screamed at me in so many ways, and instead of listening to it, I quietened it down with medications, allowing me to push my body even harder. I know I pushed my body to the point where symptoms were only just bearable, for a long long time. I know it was ultimately probably my downfall. It's a hard mentality to break out of. I'm an all-or-nothing kind of person, and stubborn. It was hard when I was trying to keep up with peers academically who are physically well. It's hard to step back and realise the destruction you're causing. It's hard when you're managing to just about hold things together, to appreciate that your approach is wrong and maybe walking away with current abilities intact would be the more sensible option. It's only really possible to pick up on mistakes in retrospect. But you know ages (years?) ago when I said on here that no-one could prove my approach was wrong? Well, it was wrong. No-one could give me hard evidence that pushing to my limits would lead to damage, but my symptoms now speak for themselves, whether they're the result of damage or dysfunction (evidence suggests severe dysfunction of my body systems due to a downward spiral seems most likely). I know moving forwards that my approach needs to be different, and my attitude. I need to know when to say no. I need to learn to recognise when my body isn't coping. I need to look after myself and my body better. Logically, I know all this. I know I need to do some but not too much etc etc. But how do I put it into practice and keep myself on track? That, I'm not quite sure yet.

We also talked about the fact that preventing relapses is psychologically really important for me. I feel really strongly that this recovery needs to be for good. Small setbacks are inevitable, but hopefully massive relapses are avoidable. I need to adopt a different approach to managing my health that can ensure I don't end up back where I ended up in October. I need to make sure that huge drop in ability level never happens again. I can't keep going through this rehab process repeatedly- it's too hard in every way, on me both physically and mentally, and on those around me..

We talked about lots of things (obviously, that's the point..), and my fears around how I'll cope when I initially go into hospital was something we touched on. She's going to see whether she can introduce me to the neuropsychologist who will be able to work with me while I'm on the ward prior to me being admitted, but given that I don't know when that will be, it all depends. They're also going to see whether someone from the CFS team can be involved in an early meeting with the ward team so that we can discuss things to try to make sure everyone is on the same page. They're also willing to share information with the team on the ward taking on my care. The ward neuropsychologist is happy to speak to other team members on my behalf if I need information to be passed on, but don't feel able to discuss it. Honestly, everyone has been amazing, and everyone every step of the way has been trying to do things to put me at ease as much as possible and make me feel safer. It doesn't make it all easy, but hopefully it will be enough to make it bearable.

It's more recently than that that things have been really flaring, although they'd been increasingly tough for a week or so before, and I don't know why. I don't know whether once again I've pushed beyond my body's limits (holiday, appointments, trips out etc), whether it's simply the sleep deprivation, whether I have an infection of some kind, whether it's stress/anxiety about going back to hospital, whether it's just bad luck, or a combination of multiple things. What I do know, is that the flares are rough, and never seem to feel easier. At the moment, I have family visiting, so it's bad timing for a flare when I want to be enjoying doing things with them! I'm glad I've been at home while feeling so unwell, as fatigue-related stuff is tough in hospital, but I know I will deal with similar challenges in hospital while trying to work out limitations and push things a little. We'll obviously keep things as safe as possible, and the team seem to appreciate that my CFS and dysautonomia need to be taken into consideration, but an element of 'no pain, no gain' is going to have to be involved. Hopefully we'll get the balance right and get things moving forward, but without too much in the way of aggravating symptoms and set-backs.

I don't know when I'll get into hospital, but when I do, I'm not sure where I'll be able to keep people updated. If it comes to it, I might give my parents the email address to publish some blog posts here on my behalf, or if I can get online (fingers crossed for the sake of my sanity!), it might just be some Facebook/Twitter updates, but I'll try to keep you all in the loop as much as I can (I just can't say where is most likely, or how often it's likely to be!). There should be a place at the bottom still where you can sign up to get emails when blog posts are published (as they might not get shared across social media while I'm in hospital, it all depends, and I never publish on a schedule, and likely never will!), and social media details are in 'about me' at the side and at the top of this post.. Everyone is very welcome to follow wherever, but they are all chronic illness accounts, and I believe in openness and honesty, so it involves the good, the bad and the ugly- I'm simply not going to pretend everything is easy when it's not- so you've been warned!

Who knows when hospital will happen though- it could still be a while.. *shrugs*

Friday, 15 July 2016

Adapted cutlery product reviews- compare and contrast

I have been given these products by the sites mentioned to enable me to write this post. Although the products were gifts, all opinions in this review remain my own and I was in no way influenced by any of the companies.




I decided to write this post due to my own difficulties using standard cutlery (as a result of weakness in my hands from several conditions, reduced dexterity, and significant fatigue-related difficulties), and the fact I have become aware both of the number of potential options when purchasing adapted cutlery, and the difficulty obtaining useful advice or comparisons; I decided I'd like to write a blog post to help others in a similar situation to mine by exploring and demystifying the various options. Many thanks to all 3 companies for their enthusiasm, support and for providing the products to make this post possible.

NRS Healthcare Kura Care Cutlery Set from NRS
The main selling points according to the company are as follows:
  • Finger indents and profiled grip for comfortable use
  • Two toned styling – reduces appearance of the curved profile whilst making the cutlery more inclusive
  • Spoon has a deeper bowl for reducing spillages
  • Knife has a serrated edge for easier cutting
  • Dishwasher safe
I think they're all important points. Possibly except point 2, not because I think they look particularly bad (they don't), just because adapted cutlery never looks completely standard, but isn't a fashion statement at the end of the day, so I feel that's negligible really. It is the most discreet of the 3 sets though. The most important element is obviously the function, and I think the product is really great actually. The handles aren't quite as wide as the other 2 sets I'm reviewing here, although they're still significantly larger than standard cutlery so still help with weakness and grip, and particularly for small hands, the size is great. The thing that I think makes this set special, is the shape of them- I've found it really does help with hand position and control. I cannot use standard cutlery with my hands in a 'normal' positioning, but with these the shape and the increased bulkiness mean that I can hold them normally, or fairly normally, and my weakness and control difficulties are minimised greatly. Also, they are suitable for both right-handed and left-handed use; I swap hands depending on which hand is functioning best, and they all sit comfortably in either hand. They are also available in red, which can be particularly helpful for dementia sufferers, and there's a right hand angled spoon and a children's set available too.

Price at time of writing for the set including knife, fork and spoon (not angled version) is: £11.99 including VAT, or £9.99 without, for sale here: https://www.nrshealthcare.co.uk/eating-drinking-aids/cutlery-aids/kura-care-adult-cutlery-set

Comfort Grip Cutlery Set from Stress No More
The main selling points according to the company are as follows:
  • Adapted cutlery for anti-slip grip
  • Easy grip cutlery to make dining easier
  • Comfort grip cutlery is kind on your hands
  • Ideal for elderly and disabled people; makes eating food easier
  • Dishwasher safe teaspoon, fork, knife and spoon with built in cushion-grip handle
These ones aren't specially shaped like the NRS set, but the size of the handle is really good and chunky. In terms of hand weakness, this set is really great. The easier grip, and a less slippy surface, makes this set much easier to handle than standard cutlery. You can also hold them however suits you, e.g. in a fist, and it's still comfortable and little grip power is required. I'd say this is the set that looks of the highest quality to be honest too. I also really like the fact there's a tea spoon. Again these ones can be used comfortably in either hand.

Price at time of writing is £9.99, available at: http://www.stressnomore.co.uk/wellys-comfort-grips-cutlery-82542.html

Red Handled Cutlery Set from Co-operative Independent Living




The main selling points according to the company are as follows:
  • Range includes a knife, a fork, a spoon and a teaspoon
  • Large, ribbed handles for improved grip
  • Extremely sturdy stainless steel heads
  • Ideal for those with arthritis or poor grip strength
  • Bendable fork and spoon heads
  • Dishwasher safe for improved hygiene
  • Latex free design
  • Bold red colouring for easy recognition
  • Suitable for use in dementia care environments
I feel that this set is quite similar to the previous set in terms of the grip. Before they arrived, I thought the extensive ribbing could lead to discomfort, but they're actually much softer and more comfortable than anticipated. The feature that makes this set special, is the fact you can bend the heads of the fork and spoons, allowing you to put them at an angle that minimises the need for wrist/arm movement, particularly if your movement is limited in a predictable way. My own wrists bend backwards which can be frustrating when using cutlery, but this is not reliably the same unfortunately. While it's tempting to think you can just keep repositioning the heads to suit your current wrist position, you cannot reposition them more than 20 times maximum, so I think it's a case of finding the position that works best for you, and then leaving them alone. Also consider the fact that once bent, they will only suit use in one hand. It really is a great feature though, that will be really useful to some people! And they can obviously be used straight too if you'd prefer. Anyone with weakness will need help with bending them- the metal is thicker than it looks in the picture, as it's flat front to back. The spoon in the set is quite large, but this set does also include a tea spoon. The knife is a rocker knife, altering the movement required, and helping significantly with weakness- you don't have to lift the knife from the plate so much which is good! I'd say this set is particularly great for weakness and restricted wrist/arm movement.

Spoon, fork and teaspoon are currently: £2.88 with VAT relief, or £3.45 including VAT. The knife is £3.29 with VAT relief, or £3.95 with VAT if not eligible. Available here: https://www.co-operativeindependentliving.co.uk/in-the-home-c1/dining-c221/adapted-cutlery-c57/red-handled-cutlery-p1660

Conclusion 
Which set do I think is best? It all depends on what exactly you're looking for really, and on your specific impairment- all 3 have their own merits. For limited wrist/arm movement, I'd recommend the red handled set due to its bendable heads. For the most comfortable/those with the widest handle, particularly if you hold cutlery 'abnormally', I'd say the comfort grip set. For the most ergonomic/ones that fit most naturally in your hands and help with control, the Kura Care set. It all very much depends on your particular difficulties, and if you have a changeable condition, several different sets might actually be the way to go!

Any questions do feel free to ask and I'll help if I can!

If you have a product or products that you would like me to review, please drop me an email at Jess.cfs.blog@gmail.com

Thursday, 14 July 2016

Back to hospital I go!

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 since 2009, but all my new neuro-type problems started in October 2015. But I explained a bit, and answered some questions.

I told her how things had progressed over time. We talked about my chronic fatigue syndrome and neurally mediated hypotension, my loss of mobility over time, and then what happened in October. We didn't discuss the details of all that happened during my hospitalisation to a great extent, but I told her a bit about what happened.

We then discussed my medication to an extent. She was horrified by my list, given my age. There are concerns about my meds, and they think they need to get me off some of them, as it's impossible to distinguish between side effects and symptoms. One of the meds I have 'as needed' that I was taking quite a lot at one point in hospital, apparently can cause Parkinson's if used regularly, so they're not happy for me to take that at all. It's thankfully one that I never really take these days, as I find it pretty ineffective (always have done!). I used it less once my nausea was controlled by the mirtazapine. My nausea is no longer controlled, but I still don't see the point in taking a medication that I don't find helps.

We discussed my level of mobility and the way I was able to transfer. (I can't stand at all, but can do pivot transfers or use a slide board)

She asked about bladder and bowels (both fine but doctors are seriously obsessed with these!) and allergies and all the really standard stuff..

She asked about how my control difficulties (particularly of my hands) and spasms felt. I explained that what I try to do and what my body does is different. (This is completely typical of functional neurological disorder, as it's almost like crossed wires- the messages are wrong)

I was asked a little about my sleep- currently difficult (used to sleep loads of Mirtazapine, but not now!).

Paragraph trigger warning: depression and suicidal thoughts
At one point we touched on my mood which was a bit awkward, as I said I'd been depressed and was outright asked whether I'd been suicidal or had suicidal thoughts. The true answer was kind of yes to be honest (a week or 2 earlier- possibly medication related), but I hadn't properly admitted them to anyone. I was reluctant to let on and it was a bit of an unexpected question in this type of appointment, so it was hard to answer, but I think I somewhat indicated that my head had ended up there but a change of medications has meant that I honestly don't feel that way anymore at all. I really don't want to die, I just didn't want to live this half-life with suffering and lack of independence and fear. I wasn't satisfied with my quality of life, and couldn't see how things would ultimately work out in a way I could tolerate. But I'm tolerating things much better now, and am seeing things far more rationally. Once my meds were sorted, I could see a way forward, felt more hopeful and felt more able to face my difficulties and rehabilitation. Please, if you ever feel suicidal, or even start considering it, please seek help; it's likely to be a temporary feeling- don't act on it, please! I didn't want to live any more but have completely come out the other side- with the right help, it's absolutely possible that you'll no longer feel the same way, whatever the difficulties in your life.

We then got to the stage where they needed to examine me. This was incredibly anxiety-provoking for me. I wheeled over to the examination bench, transferred, and they moved my wheelchair away to give them access. Bare in mind that I've not seen any new doctors since my PTSD arose, and I freak out with ones I've known years. The 3 medical professionals gathered round the bed and a screen was put across incase anyone came in, but it meant shutting off my parents to a large extent. I would've rather not had the screen, but didn't feel able to say anything (despite the fact I know they were all lovely and wouldn't have minded!). Everything that was done was familiar to me as I've had a lot of obs taken and neuro exams over the years! Touch, and being moved around, is difficult for me. It's also hard when I can't control my muscles to do what they want me to do (they're trying to test the strength of movements, but activating and maintaining the right movement is really tough with my FMD). Some of it was incredibly painful, as it triggered spasms. At one point she needed me to close my eyes- I wasn't comfortable with that at all, as closing my eyes has been triggering for me just recently (as it's reminiscent of seizures, and most of my traumatic experiences have been during seizures), and trusting medical professionals not to do anything to me or hurt me with my eyes closed is inexplicably hard. I can't even close my eyes in the daytime in my own home just at the moment, so this was close to torture for me. But I managed it to an extent, although I think she might've done more checks with my eyes shut had I not been so clearly uncomfortable. When the lovely doctor asked, I just sort of looked at her, unsure whether to say that would be too triggering, or not. I wanted to co-operate, but some things are inexplicably hard for me. She was very aware how tense and anxious I was, and the difficulties I was having trusting them. She kept trying to reassure me, and I think at one point she actually said 'what do you think I'm going to do- hurt you?', and I felt like saying 'well I don't logically think that, but my body definitely does'. It's not that I distrusted her or either of the others specifically, it's just that I know from experience that there are health professionals out there who will hurt you, and that's not something you just get over. None of my freaking out is due to conscious thoughts or anything rational, it's due to things reminding me of traumatic things I've been subjected to in the past. Reflexes were very brisk due to anxiety. Blood pressure was normal due to stress (normally low). Reflexes on the bottom of both feet were completely absent, despite several attempts on each- they said they were 'completely mute', and kept asking whether I could feel it, which I could (haven't had any significant sensation problems at any point). There was significant weakness, particularly in my legs.

They then wanted me to attempt to stand, and I agreed to. The physio trapped my feet and blocked my knees, and I held onto her shoulders. All very much something I'm used to after all my weeks in hospital. We then attempted to stand me up but my weakness and the lack of control of the right muscles is far too severe. We had several attempts, but it was clear it was never going to happen, and the neurophysio eventually made the call that it wasn't going to work. We couldn't get me on my feet despite the support of several people and significant effort. All the touch and invasion of personal space, plus pain and effort, made me feel a bit weird and I was quite spasmy and a bit spaced out, but no actual seizure thank goodness! Just had a bit of time leaning on and being held up by 2 people I'd just met.. Which in itself is pretty distressing for me. They couldn't let go because I would've been at definite risk of falling from the examination couch, but I did struggle with them holding onto me. I think we were all relieved when I was safely back in my wheelchair!

We then sat round to discuss things.

She said I don't have spasticity, so there's no need for Botox or anything. But she said she was more concerned having examined me than she was beforehand, despite the lack of spasticity. She recognised my very significant level of disability and the horrendous affect it has had on my life, and the lives of those around me.

She broke the news that they would need to see me as an inpatient, as my rehabilitation needs are far too significant to be managed in the community. I can't get the really regular input from physios etc that I so desperately need outside of a hospital ward. I need trained people doing passive movement with me and things to begin with. They want me to be admitted onto the neurorehabilitation ward in the hospital. There's no real other choice, and I'm incredibly lucky to be given this opportunity, as it goes against the standard admission criteria, but my need is too significant to be ignored. She said I can't get the help I need to be able to make decent progress without being taken in.

But it's terrifying. Truly and utterly terrifying. I developed PTSD due to the traumatic experiences I had in hospital during my 10 week hospital admission last year. I've had incredibly bad experiences since that have worsened my PTSD significantly. I really don't cope well with hospitals.

The latter part of the appointment is a bit of a blur to be honest. I know they said there would be regular (weekly?) meetings, which my parents will be able to attend with me if I want, and I'll be fully included in everything. Everything will be focused around helping me to achieve MY goals. So that's all fab. There will be physios and OTs and psychologists etc. Everyone will be working with me to achieve the function I want and require.

They're going to be seriously reviewing my meds, as some of mine can potentially cause dystonia and other symptoms, and they also think my meds are potentially contributing to my fatigue. I have serious concerns about how I'll cope with bad pain flares etc as a result of any changes, although I think changes will be managed gradually, and I do find it hard when a doctor doesn't know the extent of what I've been through and how things were when I was put on the medications.. BUT I'm on board with what's been said, and at least as an inpatient things can hopefully be dealt with swiftly if they get out of hand and unbearable. There are meds like pregabalin where I'm on the maximum dose, but think I have become tolerant to it- it helps to an extent, but I'm still in significant pain; doctors keep wanting to increase it, but they can't with me being on the maximum dose already.. It would be good to be able to start over with it, or move to something different that might control things better, as I'm not sure my pain management is optimal right now, but I also know we tried to reduce my pregabalin in hospital before and it didn't go well at all.. I ended up in absolutely horrendous agony. I'm not looking forward to potentially going through the same again. It wouldn't be an overnight process- it would certainly take a while to be managed appropriately, and I'm not even sure it will be what they choose to do with my meds, but if we can get my meds as minimal as possible, but managing symptoms as well or better, then that's certainly my hope.

I asked whether the consultant trusted every member of the team on the ward, and she gave me her word that she absolutely does. She said that if she was in an accident tomorrow, she'd want to be taken to the ward where I'm going. I know it seems like a strange question, but due to past experiences, trusting medical people is really tough. Sometimes I ask a question not necessarily to hear the response, but to see the way in which they respond. There was no hesitation or doubt in her voice- I feel she was telling the truth, she really does trust them. The other 2 members of staff were also in agreement. None of them will have seen the staff from a patient perspective, but it still reassures me to an extent.

As I was clearly very anxious about the whole thing, the physio took me up to see the ward after my appointment before I left. By the time I got up to the ward, tears were streaming down my face- it was all such a shock and so overwhelming and I was terrified. I knew I didn't want to go, but also knew it was necessary for my physical recovery. I knew I couldn't turn down the opportunity, but I am so afraid of the idea.

It's a small ward with only 12 beds. Some are rooms with up to 4 people, some are individual rooms. I asked whether I could be put in a room with others, as I think I'd feel safer that way, as there are people aware of you and those that are with you, at all times. I feel that that way there'd be less risk of anyone doing anything to me that they shouldn't. Hopefully. They said they couldn't guarantee it, but that they'd make a note of it, and it would be taken into consideration. Given that most people would prefer an individual room, they said there should be a good chance. All rooms are single-sex. There's a day room which looks alright, and I'm considering spending quite a bit of time in there, as I think I might cope better there than in the standard hospital bed/chair area, which just screams hospital. I'll see when I get there though. Probably depends who I'm sharing with, what I'm wanting to do, how I'm feeling physically, and how I'm coping with mixing with people, and different aspects of the environment. Yeah, I'm overthinking everything- I know.. 

The gym has equipment for passive exercise and standing frames and parallel bars etc, so there should be access to all the equipment needed. None of it is nice looking though, and a little bit frightening.

Now that I'm having far fewer seizures and have far more control over them, I feel that I have fairly good rehab potential with the right help, as do the team, and this seems like exactly the right help, with plenty of input from all the professionals needed.

The consultant was so lovely. She said it would be such a waste to leave me in a chair and functioning as little as I am, and not give me the help needed to fulfil my potential, both for me and my family, and for society. It was such a nice thing to say and meant a lot. She seems really keen to help me get my life back on track in every way, and helped me see that I can have a future- something I so desperately need to hear and believe. I have some use of all my muscles, none of them are completely paralysed, they're just weak and there are significant problems with control, and some triggering of spasms, so there's going to need to be a lot of retraining. Progress isn't going to be rapid and over-night, but she believes I have the potential to make a significant recovery. That belief in my rehab potential means the world. It's worlds away from the 'but you're functioning well from a chair' response I got from my consultant neurologist last time I saw her. I just hope the team's hope and confidence in my ability to heal doesn't diminish, as happened during my last hospitalisation. This consultant said she won't give up on me, and the team will fight to help me get where I want to be. She seemed to genuinely care, as did the other professionals. It means so much. My mum welled up, delighted that someone was offering me some real help, and her and my consultant hugged at the end of my consultation. I wasn't up for hugs, but she put her hand on my arm and wished me all the very best, and I thanked her. And I truly am thankful, just terrified too..

The actual consultant I saw is sadly only around until the end of the month, due to personal circumstances, but she's hoping to get me onto the ward before she leaves. Regardless, she said she'll leave a treatment plan of sorts to be followed by the consultant taking over and the rest of the team. Although largely a plan will be put together once I've been assessed by the different members of the team on arrival. She said she will be in touch to check on how I've got on on her return, which again was really appreciated.

The physio who took me up to the ward was also so, so kind. She said if I ever needed to speak to someone or see a familiar face then she will be around a lot, as she is a physio on the ward and her office is on the ward too. She was very willing to answer all my questions, and spend the time showing me around the ward to try to put me more at ease, which meant a lot. She genuinely made it seem like staff will be really approachable and I'll have people supporting me through my rehabilitation. She said if I had any concerns just to speak to a member of staff straight away and they'll work with me. It seems like most places are fairly visible from the nurses' station (where there's normally multiple staff), so hopefully that will help me feel a bit safer. I will also keep my wheelchair with me at all times, and I have the ability to get around the ward a bit independently these days, so I'm not going to be stuck in my bed and lacking any autonomy.

I'm going away with some family today for a week, but will then be admitted anytime after that, probably at short notice. I'll have to pack a bag and get things sorted and ready when I get back from holiday so that when I get the call I can head in without any added stresses.

My parents will be able to visit me regularly, and there's an area where they can bring my dog to meet me. I have a friend who works at the hospital, so hopefully she'll be able to nip in to see me some days too, which would be fantastic.

I've looked online and I should be able to pay for WiFi access. I definitely need Internet access to be able to cope! There are TV systems too, but I know I couldn't manage those when I was in hospital before, so I'll just have to see what the set-up is with the screens and whether they're accessible for me. I might have to rely on catch-up on my phone and iPad if not, which is fine. I'll take colouring too, and anything else I can think of for distractions.

It feels weird, because I have far more knowledge about hospital life than I had when I was admitted last time. Last time I was very severely unwell when I was admitted, and incredibly disabled, with very little understanding of what to expect. This time, there are elements of the unknown because it's a different ward, completely different staff, and a different type of ward (neurorehabilitation rather than acute neurology), but I know what to expect to an extent, and have had time to get over the shock of my actual condition. Apart from the massive issue of my PTSD, it should be easier this time round.

From what's been said, the elements I found so difficult last time (decisions being made about me and not being included etc), will not be repeated this time. They've said I'll be included throughout the whole process and people will always be able (and willing!) to discuss plans etc. Of course, despite plenty of reassurances, I have significant concerns about what all the individual healthcare professionals will be like and how much they'll understand my conditions, and how they'll respond to things, but I know I need to take this leap into the unknown in order to give myself the best chance of a decent recovery. My parents aren't far away, so if needed I'll be able to get them in to support me through things, or if I'm falling apart. The physios that I have met seem really lovely, so hopefully I'll get to feel comfortable with most of the team. I really do think everyone is going to be really supportive, particularly as they realise (to an extent) how psychologically challenging this is for me. It's so difficult to have PTSD related to medical stuff when I'm disabled and medical stuff is going to be a significant part of my life for a while. I never thought I'd be thrown in at the deep end like this, but my mental health is also being negatively affected by my lack of progress, and this admission should give me the specialist support I need to really move things forward physically, and regaining abilities will hopefully really positively affect my mental health. I wouldn't say I'm depressed at the moment, but given how badly depressed I've been so recently, I need things to be moving forward to reduce any risk of another relapse, which is something I'm very keen to avoid!! It's going to be hard on my PTSD, there's no doubt about that, and I might go back into a trauma response and/or quite dissociative (although being a bit detached and oblivious to my distress might not necessarily be a bad thing! At least initially anyway..), but if I can get through, with support, then this could be the help I need to really turn my life around, and open opportunities and a normal life back up to me!

The thought that I might get a decent quality of life back is incredible.. I'm terrified, yes, but also hopeful that this could be the turning point. I desperately needed hope and I now have reason to. They're going to help me. They can see that my life has fallen apart and they're going to help me piece it back together.

As frightening as it is, I'm incredibly fortunate to be being given this opportunity. There are people who would give anything to get the full-on, multidisciplinary rehabilitation that I'm being offered. I'm not going to waste it!