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!