Life update #6

There’s a couple things I’ve mentioned in previous post that I have updates on!

  1. The Dr who stopped my diazepam (Valium) has been told by the consultant to go much much slower when weaning me off it. They’re currently taking it down a mg every 2 weeks, which is what I tried to tell her to do. Anyway, that’s all sorted, thank you all for your support whilst I ranted about it.
  2. I was stressed at one point because I hadn’t seen my diagnosis written down, but the Dr here has my notes and when I asked for some clarity, he said: ‘you’ve been given a diagnosis of Bipolar Disorder and Schizoaffective disorder’ (which basically boils down to SZA-BP type). It must be in my notes because I haven’t seen him for over a year. He was great about it and even said if I want more clarity then he can talk to me more about my diagnosis and see if we can work out together what fits me best – which is such a kind and great approach. So that’s calmed me down also.

Updates on the mental health unit I’m at:
I will have been here a week tomorrow. Although I’m really struggling to settle in, it’s pretty amazing here. The Occupational therapists are really hands on. Mine drew me up a really great care plan and another helped me cook brunch one day. You also get a named nurse who do 1-to-1s with you. Mine’s alright, nothing wrong with him but maybe a little lacklustre! The rest of the staff are great. There’s a walk in the park available every morning, 2 groups a day which can range from anxiety management, life skills, music, creativity, brain training to self esteem and stress busters. There’s a cooking group nearly every day with different things on different days like soups and smoothies on a Monday and baking on a Tuesday etc. Every day there’s also a relaxation group but I’ve not been – I have nervous energy and bounce my legs constantly which irritates people trying to relax and makes me anxious enough to not be able to relax. The weekends are very quiet. One member of staff told me if you’re working towards your recovery all week, you should get the weekends off. Which is fair enough and most people are on leave anyway.

So yeah, I’m struggling to settle but the place itself can’t be faulted, it’s much better than an acute ward with no therapies whatsoever and boredom everyday!

Life update #4

So I thought I’d be gone longer than this, but it turns out, getting my laptop and internet sorted was pretty easy going, so I’m online and hooked up.

I’m here, it feels very weird. I miss home but I know that’s not the right place for me currently. I’m used to hospitals so it doesn’t feel that unfamiliar (it helps I know two members of staff) but it’s a strange mash up of a house and a hospital. It’s called _______ house, you have your own room (shared bathroom and kitchen), but there’s still “the clinic” where you take your meds in a little dixie cup and obs every however many minutes. I’m only on hourly checks though which is good.

I’ve already done a stress busting group (that was basically mindfulness), which I was too anxious to get much out of, and a member of staff escorted me to the local shop to pick up some food. I just grabbed randomly at the shelves, I don’t even know what I bought – I haven’t been out without my parents in a looooong time. I think I bought pasta sauce but no pasta (great).

I even got hesitantly involved in a group cooking activity (a failed attempt at an apple cake). Now I’m in my room with a pounding headache, having not eaten all day and waiting for the doctor to come take bloods etc. Thank you so much for all your well wishes, I will reply when I’m in a better headspace!

Life update #3

I don’t feel so great.

The last two days have seen me keep breaking down and crying (very unlike me). I’m just so stressed out. I can’t even identify what in particular is making me so stressed, it’s just a whole body feeling.

I saw my therapist earlier today and she praised me for still going. She said as much as it felt like I wasn’t managing it, I have managed it and that’s the thing to focus on. Sometimes I leave our sessions feeling more positive but, whilst I was happy she was there, when she left, I broke down again. It’s like I can’t show my team when I’m struggling so they assume I’m fine (I think).

I’m worrying about things again. Like how certain people from the hospital are keeping tabs on me as someone who’s had “extra-psychological experiences” I think I’ve made up that term but it seems accurate. I can’t leave the house currently. A friend today told me I’m being paranoid but I can’t separate anxiety from paranoia. I’m stuck wondering if I need to contact my mental health team or not (my parents are still away).

The worst thing about having an illness that takes your insight away is you’re never sure if you’re sick or not.

Life Update #2

My parents have been gone now for 3/4 days and I am not coping that well. I’m highly anxious, I have no appetite (and I’m on antipsychotics!!), I’ve not showered, changed clothes or left the house in that time. In fact I’ve barely left my room.

My aunt is here and I’m stressed trying to keep my cats away from her dog. I also have the feeling she’s a bit put out that I’m spending 0 time with her or my grandparents, but I just…can’t? It’s 8 days to go before my parents get back and I’m barely getting by. Will I get better at this? Or will it just get worse? My older sister is coming up today over the weekend so that might help a bit, though she can be a bit overwhelming at times.

I saw my therapist yesterday and promptly forgot all she told me other than one thing: Positive affirmations. I chose three, “you got this!”, “you have no power over me” (from the Labyrinth and in relation to my intrusive thoughts, and “all is well” (a spin on the last line in Harry Potter because I’m a nerd). She said to write them down and pin them up somewhere I can see them everyday. I think I’ll try that later one.

My CPN (community psychiatric nurse and my care coordinator) came out today to see how I was doing. We discussed something that’s been giving me terrible anxiety – my diagnosis. So, I was diagnosed, as most of you know, with Schizoaffective disorder when I was last in the hospital. In fact I was diagnosed with it twice. Aloud anyway. The problem? I’ve never seen it written down as fact. That doesn’t mean it’s not in my notes but I’ve not seen it. What I have seen is ‘psychotic spectrum disorder’ (of which SZA is a type), but thats an overarching term and not very specific. My CPN said she’d have a word with my psychiatrist and that requesting an exact diagnosis is not an unreasonable thing to ask for or to get. However, it doesn’t stop my anxiety in the meantime. I know diagnosis plays a small role in treatment but I am one of those very rigid, black and white thinkers who need boxes and categories and rules to feel safe and understand my own experiences. In addition, the service I’m with specialises in early intervention for psychosis, that means they can only keep you on for three years, at which point I’ll be transitioned to the regular adult community mental health team and I’d like to have a firm diagnosis that can be handed over. Here’s hoping I’m just overreacting (which is likely) and my pdoc can just confirm things for me.

I promised my CPN I would shower and change over the weekend, eat little and often and on Monday, come for a walk with her in my village, just to get me out the house. Any one of those things feels overwhelming at the minute but I’m pressing on.

Hope you all are doing well!

Life Update #1

So it’s happening. My parents (one of whom is my full time carer) as going away. For 10 days. They’re heading far abroad on a holiday they booked more than a year ago. Before they went, my mother apologised to me “we didn’t know what kind of year this would be” (referring to 2019). I’ve been hospitalised 3 times in the last 12 months and have relapsed since into psychosis.

My biggest feeling at the moment is anxiety, what if something happens to them? What if they have a car crash on the way to the airport, or their plane crashes, or they are attacked at their destination? I don’t know what I’d do if any of this happened, but I’m trying to think realistically. I know these are thoughts fuelled by anxiety, not logic.

Family members are coming to stay with me some of the time, but they have a dog that always goes for the cats (we have three) so that’s another source of anxiety. Since I don’t leave the house alone, there is some of the time where I will be shut up in the house by myself, possibly for all 10 days. I don’t know what effect this is going to have on my mood (as I’m writing this, I’ve just turned on my SAD lamp in hopes it will boost my mood a little).

Luckily, the early intervention team I’m under have been really supportive. Tomorrow I see my psychologist, on Thursday my peer support worker is coming round and on Friday I’ll finally see my case manager/care coordination whose been off for the last 3 weeks ill. I know I have things to talk to about with her. Mainly a discrepancy that I found in my last hospital discharge summary that stressed me out so much I ended up punching a wall (not the best way to deal with negative emotions and quite unlike me). Hopefully it’s all fine and I’m just overreacting.

I just wish I was independent, that I could cook, that I could drive, that I could look after myself without negative symptoms getting in the way. That I could concentrate, or be motivated enough to start activities. The only thing I’ve been proud of doing recently is this blog! So I’m relying on you guys to get through the next week and a bit.

It’s not going to be easy, but I’ll do it

I have a date!!

After the disappointment of learning I wouldn’t be admitted for a few weeks, something positive has happened. There is a discharge happening on the 28th of Jan and the bed has officially been assigned to me. This means there won’t be a lot of wondering and waiting for a phone call that says ‘can he get here tomorrow??’, which was initially the case.

I’m feeling a lot of things, nervous, scared, resigned, a little bit excited (which is a weird feeling I’ve never had going into hospital before, I think it has something to do with the nature of the hospital and the fact I’m not acutely unwell currently). Overall I feel hopeful, something I haven’t felt in a long time. Like I can actually recover from all this.

Time to pack a bag, wish me luck!

Update: Mental Health Rehab Hospital

Some of you may have been following my progress of being accepted to a long-term hospital ward that helps to rehabilitate those with severe and chronic mental health conditions. I wrote about it here and here.

I had my assessment in early December and was told that I was appropriate for the service and beds would be available soon. I then went on a visit to the hospital with my parents and was told that they had discharges coming up and that a bed would be available for me ‘soon after Christmas’. Well, my mental health team rang them yesterday and was told that we shouldn’t expect anything for at least a few more weeks. It sounds as if the pressure on beds over Christmas meant that some people from acute wards had to be moved in ahead of me. I was told I’m ‘top of the list’ but know I could always be bumped down in an emergency case. I in no way resent beds being given to those who needed them, especially whose needs were greater than mine, but I’m feeling rather despondent about the whole situation.

My parents go away next week and whereas we had hoped I’d be moved in by now, I’ll be instead at home, without my usual full time carers (parents). It’s the way of the world and it sucks but what can I do about it? A nap might be a good start.

They tried to make me go to rehab and I said “yeah, alright”.

So I’m going to rehab, but not the one you might expect. This isn’t an alcohol and drug rehab but a long-stay inpatient mental health rehabilitation unit (phew, long name). You might not have heard of this before – I certainly hadn’t until it was mentioned to me by the doctor as my last hospital admission (more on that later). It turns out there are very few in the UK and I happen to live locally to two.

So what is a MH rehab unit?
According to a leaflet I was given, the place I’m going “is a 24 hour nursed rehabilitation unit based in the community, providing intensive rehabilitation for individuals who experience complex mental health difficulties, predominantly psychosis, and have persistent symptoms and severe levels of functional and social impairment.” They are recovery focused and although technically hospital wards, are designed to look a little more homely. There is also a big emphasis on doing things for yourself, so whilst staff will help you, you are expected to do your own cooking and washing and tidying. This is what’s worrying me at the moment: COOKING – I no longer have the concentration or motivation to be able to cook or shop by myself so that will be a big one.

So why am I off to rehab? Basically after six episodes and four hospitalisations within 14 months, my brain is official tired out (TM). I’ve gone from studying and reading a book a week to barely getting through half a page of a young adult novel (don’t ask how long it’s taken to type this). My concentration is appalling, as is my motivation and together they mean I’m not able to look after myself properly. My parents have become full-time carers which I don’t want and isn’t fair on them. I’m basically stuck. On top of this I have persistent auditory hallucinations and some “unusual beliefs and experiences” which make it extra difficult to leave the house and socialise.

How did I get accepted?
My care coordinator sent off a referral, the ward manager looked through my care notes and accepted the referral then booked me in for an assessment. Which was…nerve wracking. I got to see the unit up close and we sat in the activity room where I was asked a few questions about what has been going on for me and what I’m able to do. Luckily they let my care coordinator in with me so I had some help with some of the questions. The occupational therapist who works there showed me around and then when we got back the the activity room, the ward manager said they could help me and were accepting me into the unit. So when do I go? Apparently beds are precious this time of year but I have a bed ready to go, it’s just the person in it right now is waiting to move and the other place is being slow. They did say I would probably only get a few days notice, i.e “hi the bed is ready, can you move in in two days?!” so I’m constantly a bit on edge currently. I plan to update from the unit when I’m actually there. Please note: I will not be writing about any of my fellow patients for their own privacy and confidentiality. This is just like an online journal for me to inform others but also make sense of stuff for myself.