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?😉)