Life update #5 (and a bit of a rant)

I’m four days in. It’s was a little rough to start with, mostly due to a Jr Dr, screw up. I take a benzodiazepine (diazepam/valium) every night and have for almost two years. If you were to ask why I take it, I’m not sure I could give you a straight answer, I’ve been on it at various doses for a whole bunch of things – anxiety, sleep, epilepsy, catatonia. I just know that it’s built up in my system and it’s a drug known to have bad withdrawal effects if stopped too soon, especially at high doses or when someone’s been on them for a long time.

My first night here, the Dr I saw yanked me off it. No warning, I only found out when the nurse in the clinic for nighttime meds told me. I said it should be on my meds card but, being a nurse, he couldn’t change the card himself. I asked him to call the dr (she had messed up my dosage of another med to so needed to be contacted anyway) but she wouldn’t put me back on diazepam. The night was very rough, I couldn’t sleep and was angry. At 2 am, I begged them to call her back to put it right. They rang, she refused. I got 1-2 hours of sleep.

The next morning she came onto the ward and called me into the clinic asking “what’s all this about Diazepam?”. I explained again that I have been taking it for a long time, that the head pharmacist (of the service she works for) said it would cover me for epilepsy whilst I went off another med. She dismissed this saying it wasn’t in my neurologist’s notes. I said I wanted to titrate off it slowly (I have tapered of large doses of diazepam before, usually 1mg every 1-2 weeks). She said she would give me under half of my original dose for 5 days then take me off it completely. There was no room for argument and I didn’t sleep well again.

So yesterday I had my ward round with the consultant psychiatrist. When he heard about the diazepam and how long I’d been on it, he immediately said I would need to taper off it very slowly, maybe even into the community and put me straight back on my original dose, which I got last night. I was so so relieved, and a little bit mad at the other Dr…(ok more than a little bit).

Otherwise things are going well, the main Dr is very nice, all the staff are nice, not had a problem with the other patients (but I’m very shy so I’ve not really spoken to them). They have the Doctor here every two weeks and the Jr doctors a few times a week. There are a few nurses on day shifts as well as the managers (senior nurses) and a nurse on in the evenings. There are a lot of really nice healthcare assistants, a psychologist, an OT that will 1-on-1 with you a few times a week, and two peer support workers. It’s an amazing place – so many more resources than any acute hospital I’ve ever been in and much friendlier too!

I’ll go into more detail in another post but thanks for sticking with me through that rant!
Hope you’re all well!

A note on “recovery”

I feel like my mental health recovery has plateaued. I was acutely unwell and in hospital at easter for 7 weeks and before I could fully recover from that I become unwell again just 3/4 months ago (but avoided hospitalisation). Afterwards I fell like a shell of my former self. My mind kept going blank, I couldn’t concentrate, I was apathetic, I was isolating and wasn’t enjoying anything. This is when the referral was made to the inpatient rehabilitation ward.

Then I started making little strides; I could concentrate on a tv program if we cut it into 5 parts, I enjoyed a McDonalds meal (not recommended for other people who also have high cholesterol, oops), I started to worry about university (showing my apathy wasn’t all consuming). I expected to make further strides, to be able to read again, to watch a film, to go out and know what to say in social situations…but it didn’t come. In fact, the most impressive thing I’ve managed to do is this blog, which I’m very pleased with.

I t feels like I’m on a straight line instead of heading up and progressing. Then I remembered what my care coordinator had said to me recovery isn’t linear. There are ups and downs, dips and rises, plateaus and sometimes you might even feel you’re going backwards. That’s okay. It’s ok to feel down sometimes or to feel like progress has stopped. That doesn’t mean you’re not going to get better, that you won’t recover.

So I’m trying to tell myself it’s fine if I’m plateauing, in fact it’s normal and expected. I’m still recovering, and if it takes a while, that’s okay.

Possibly signing off for a while

I go to my residential inpatient placement tomorrow (the MH rehab unit I’ve been talking about). I am very nervous – new people, new schedule, new challenges. Luckily in the UK, and especially at a place like this – most relaxed than an acute ward, I’m allowed my phone!

I write my blog on my laptop and though I’ve been told I can bring it (hooray!), it could take a few days for them to check it in and make sure it’s safe for fire hazard reasons.

So I’m off on a new adventure. I feel very mixed about it and I will update you all as soon as I can!

5 things you learn in psychiatric wards

This post was inspired by Caitlin who was inspired by Cassandra! I thought, since I lived in the UK, I could offer a different perspective.

  1. Even if you go in as a voluntary patient you can’t just leave
    I’ve seen that some people in the US can check themselves out against medical advice. To leave the hospital in the UK, you have to be signed off by the consulting psychiatrist, and if they don’t agree to you leaving, they can recommend you be sectioned (held involuntarily).
  2. If you don’t bring clothes with you, get used to wearing hospital PJs and the notorious socks!
    Some people get brought in by the police in particular or transferred to a hospital from a different area and usually have to walk around in too big PJs that for some reason have a gaping hole in the crotch area.
  3. In the UK you usually get to keep your phone!
    This always seems to blow the minds of US patients who usually have theirs confiscated. However, phones can be removed if you break certain rules, such as taking pictures of other people, or making harassing calls. Mine has twice been confiscated for making calls in the middle of the night.
  4. If you refuse medication, it can be forced upon you.
    This is only the case if you are detained under a section. I once had an argument with a guy from the US who held that Drs could give short acting sedating injections but not administer a long-acting antipsychotic against someone’s will. Well here, if they deem it in your best interest, they certainly can! I’ve seen it done and it was set to happen to me, until I agreed to have it without restraint (as I had no option either way).
  5. Psych wards are for stabilisation only
    I hear a lot about the groups and therapy offered in US psych wards, and it might be different in other parts of the UK, but of the three hospitals I’ve been in, one did a half hearted music group once a week and the rest of the time we were given a bunch of crayons. There was no therapy, no groups, no activities. You colour, stay in your room or watch TV and be unwell. They deal with keeping you safe from yourself and others safe from you and medicating you so you can leave again. They only take you even voluntarily if you’re an immediate danger to yourself or others.

What did you learn from being in a psychiatric hospital? Does it differ from the UK experience?

Bipolar Mood Scales

In The UK there is a charity known as “BipolarUK” who provide, on their website, a mood scale for people with bipolar that takes into account both depression and mania. This is great as most mood scales top out as ten being the number to aim for, as “happy” or “content”, but for people with bipolar, our mood can overshoot that…by a lot.

This is the scale provided by BPUK

It’s quite cool how it shows what counts as balanced mood – as this can be difficult for people with bipolar to figure out “am I happy or hypomanic?”, “am I sad or depressed”. I have two main problems with it. 1. It doesn’t account for mixed episodes, though to be fair, this would be very hard to do. 2. Everyone is different. The examples listed are quite specific. In severe depression ‘no movement’ suggests catatonia when not everyone who’s severely depressed experiences this. Mania lists “vindictive(ness)” which is subjective and not always the case, some people who are manic may be irritable but overall very charming and “religious delusions” is very specific. Lots of people have grandiose delusions of a different type, or persecutory delusions.

It is, however, a great baseline for the creation of your own mood scales. I adapted mine so that it looks like my own relapse signature:

  • 10 – (Mania) Psychosis, delusions of grandeur and/or persecution, overspending, loss of insight, no sense of danger, need to be hospitalised
  • 9 – (Mania) Little sleep (-3 hrs), talking very fast, constant movement, pacing and agitation, paranoid and reckless, euphoria
  • 8 – (Hypomania) – High levels of confidence and self esteem, racing thoughts, increased speech, unproductive tasks and many unfinished products, risky behaviour
  • 7 – (Hypomania) – Sense of happiness and expansive mood, irritability, excessive productive and unproductive tasks, talkative, exercising a lot
  • 6 – (Balanced mood) – Good self esteem, chatty, productive, content, optimistic
  • 5 – (Balanced mood) – No symptoms, content, balanced mood, good and bad days
  • 4 – (Balanced mood) – Slightly irritable, withdrawn, poor concentration
  • 3 – (Mild/moderate depression) – Anxiety, panic attacks, very poor concentration and memory, tearfulness
  • 2 – (Mild/moderate depression) – Everything seems unenjoyable, sleeping too much or insomnia, loss of appetite
  • 1 – (Severe depression) – Suicidal ideation, hopelessness, guilty, can’t go out or get out of bed, no emotion (numbed)
  • 0 – (Severe depression) – Actively suicidal/catatonic

What do you think of the mood scale? Helpful or not? What does your relapse signature look like?

A new understanding of mental illness

Thomas Insel talking about a new understanding of mental illness

As part of an online course I am doing, I came across this video of Thomas Insel, Director of the National Institute of Mental Health, and his insightful talk on mental health. Thomas talks about how the number of deaths from physical health problems have dramatically reduced and how we might be able to do the same for the (very high number of) deaths due to mental illness.

Here are somethings that stuck out to me whilst watching:

  • There are 38,000 suicides each year in the US, 1 every 15 minutes
  • It is the 3rd most common cause of death in 15-25 year olds and 90% of suicides are link to mental illness
  • There is ongoing debate about whether or not mental illnesses are disorders of the mind or of behaviour. Thomas views them instead as disorders of the brain
  • This is supported by the role of drugs in mental illness and the effectiveness of medications suggesting chemical imbalances within the brain
  • For many disorders we don’t have an in-depth understanding of why they are but we know a little bit about how circuitry is different in these people. This is called the human connectome – the wiring diagram of the brain.
  • In schizophrenia there is evidence for less grey matter and this decreases as people age. This is normal to some degree but in schizophrenia, it overshoots the mark and crosses a threshold. When this threshold is crossed, it is seen as a disorder.
  • Research shows that for conditions such as parkinson’s, there are changes early on in the brain that allow for early detection and intervention. The symptoms of parkinson’s are the last part of the disease’s life cycle to show up. In psychiatry, we wait for symptoms to show, despite evidence that grey matter is significantly reduced in children who go on to develop schizophrenia. Is this then really early detection and intervention?

What do you think of the video? Do you agree with Thomas’s view? What stuck out to you?

The problem with “you don’t LOOK ______”

This topic has come up for me lately when reading some of my notes from an old psychiatrist. She noted I had a diagnosis of Asperger’s (now just called autism or ASD) but, in her view, “I have to say, this wasn’t particularly evident”, citing my appropriate humour. Here’s the thing.

There’s no one way someone with ASD or other conditions act, behave and come across. We are all individuals. This professional had never done a formal assessment for autism with me, she didn’t know the sensory issues I have, the trouble with socialising, my black and white thinking (which did some up more later on) the fact I was sent to years of therapy to gain social skills. She even noted (as every professional seems to like to write down) that my eye contact was poor. I have, on the other hand, not had much problem with humour, growing up in a house where humour was thrown around regularly, I’ve always had a good sense of it. Does this make me not autistic? No. Is this even in the criteria for autism. No.

This is a wider problem than just professionals, I’ve heard stuff thrown around by the general public, comments about others such as “well, you don’t seem like a schizophrenic” or ” you don’t look autistic”, or, dangerously “you don’t look like you have an eating disorder”. This is usually because they are basing their understanding of these conditions on an incorrect paradigm they’ve formed. Maybe they watched a film with a character who had one of these conditions, maybe a friend of a friend has a child with one of them. That forms the outline in their mind of what every person with that condition should seem, look and behave like. It doesn’t take into account individuality at all.

This is a harmful practise, it might mean people are under-diagnosed if a professional doesn’t assess them properly or take them seriously (hopefully unusual but not unheard of). It can mean that people who struggle with the knowledge they have a condition further stigmatise themselves or even doubt their diagnosis. They might go off their meds and/or become sick because of it. For some people, that condition is part of their identity and outwardly doubting it on limited information can have a major impact on how they view themselves.

I have a good sense of humour, I’m not particularly disorganised in my speech when I become unwell. I am autistic, I have schizoaffective. These things are not mutually exclusive.

Has anyone ever said a similar thing about you? Have you ever heard someone doubt a diagnosis because of their own experiences? I’d like to hear it if you have.

My experience with Home Treatment

Here in the UK we have a great service in some areas of the country that is described as an ‘alternative to hospital’. They’re known as the home treatment team (HTT) and like the name suggests, they come to visit you in your home and consist of doctors, nurses and social workers. The home treatment team kicks in when you’re referred to their service, usually because you’re in crisis and on the borderline of being hospitalised.

“We provide an early referral service for community teams to support patients either in crisis or to prevent a further deterioration of their mental health. The Home Treatment teams work closely with the Adult inpatient wards to ensure they identify patients who can continue their treatment at home and facilitate an early discharge. The service aims to empower and enable patients and their carers to take an active role in their treatment.”

Good things about Home Treatment

  • The doctors can prescribe emergency medication for you without you having to go to a hospital and wait for hours to see a duty doctor.
  • They can see you in your own home so if you find it difficult to leave the house or attend appointments, you’ll still be seen.
  • They can potentially stop you from becoming hospitalised by giving ongoing support in the community, their goal is to keep you at home.
  • Even if you feel okay or not up to seeing them on a particular day, they can arrange a phone call to check in with you.
  • If you need to be hospitalised, they can ring around and stay with you whilst they look for beds or take you to a crisis suite.
  • Because they see you daily, they can respond very very quickly to any decline in your mental health.
  • They are usually also who you are initially discharged to after coming out of hospital and can help you adjust to being back at home.
  • You may be discharged early if you agree to Home Treatment (I was at my last admission).

Not so great things about Home Treatment

  • They’re incredibly busy and can’t guarantee you’ll see the same people, so you may see people for 2 weeks and have to repeat your story to a different person each time. This I found particularly hard because of my ASD.
  • They can feel intrusive. Sometimes your home is your sanctuary and having people come in to your home who you don’t know can make you feel invaded. This is particularly a problem when I am already paranoid.
  • It can be really hard work to talk about your mental health to someone every single day, I found it wore me out and I would clam up and speak as little as possible.
  • This may be a ‘good’ thing for some people but once, home treatment were put in place to ensure I took my medication. I found this very uncomfortable and unfair at the time.

Overall, there are more positives to home treatment than not, however, I always resist when they try and refer me to them. The last time I was ill, I repeatedly refused to see them and was just able to stay out of hospital due to an increase in medication. However, they have kept me out of hospital before during a mixed episode, which quite a feat. They have also supported me each time I’ve been discharged from hospital and I think it was helpful having some input after being in such an intensive environment for so long. My local team also takes into account that I don’t like new people and try and send the same people to my house as much as possible, which I really appreciate.

Have you had any experiences with home treatment? Is there a service like this where you live, if not, would you like there to be?

27 Things for 2020

Two years ago I started a challenge with myself. Whatever age I was turning that year, on New Years day I would write out the same number of things to achieve by the next New Year. This year I turned 26 (agh that makes me feel old!) so, although I’m late, I’m going to look back at my 2019 goals and set about making 27 new ones.

  1. Engage with Early Intervention and therapy – Check! I’ve been really using EI as much as possible and engaging with my therapist for a whole year now. I see her weekly!
  2. Be a part of/collect university project data collection – Nope. I’m a researcher at a university here in the UK but I missed almost all of data collection because of being in and out of hospital and struggling with my mental health in 2019.
  3. Earn my outstanding Hogwarts Running Club medals. Check! I’m part of a great online community, (which you can join here) that allows you to purchase running medals, donates the money to different charities and allows you to work up to your medal goal at your own pace. As a bonus, they’re all Harry Potter themed! I even completed a Race for Life 5K for Cancer Research UK.
  4. Lose some weight. Nope. Although technically I did lose a lot of weight…I then put it back on and more, so I’m not counting this one
  5. Keep Reading as much as possible. Check! I read 58 books this year (check out my Goodreads account for my “Year in Books”). Although my concentration currently makes it hard to read, I’ve always read as much as possible, even when that was 0.
  6. Stay on HOL. Check! HOL stands of Hogwarts Online, a online Harry Potter community that I’ve been a part of for years but leave for long periods due to being unwell. Well, I’m still there, though not that active currently.
  7. Do some work for Autistica. Check! Autistica is a charity that looks at research into and around Autism. They don’t look for cures but how better to understand it and improve autistic people’s lives. I did a talk for them at their annual conference in 2019.
  8. Keep up my mental health diary. Nope. I did this for part of the year, then stopped. I’ve just started it again!
  9. Go on holiday. Check! I went to Corfu with my family and partner at the time.
  10. Visit the WB studio Tour. Nope. This is a tour of the studios where they made Harry Potter (notice a theme yet?). I’ve been trying to arrange a visit for over a year now but was in hospital when I was due to go.
  11. Put my Mental Health first a bit more. Check! I’ve been allowing myself to turn down friends offers etc if I don’t feel up to seeing them. It’s taken a long time to be confident enough to do this.
  12. Start some form of regular exercise. Nope. I did running for a while but currently I haven’t felt able to exercise for months. Maybe this will change in 2020.
  13. Finish my tattoo leg sleeve. Check! It took 4-5 sessions to do but it’s finally done and healed and I love it!
  14. Get a Molly tattoo. Nope. Molly was my cat who passed away in 2018. I have sourced an artist I want to do the tattoo but I have to travel a long way to get it and haven’t felt up to it.
  15. See my friends R, N and H. Check! Saw all of them in 2019 somehow (they all live far away)
  16. Keep room tidy. Nope. I was tempted to check this off, until I looked up and saw the state of my room – oops.
  17. Use some coping strategies. Check! I’ve learned a few now from therapy and put them into place when I’m struggling with anxiety.
  18. Keep up with writing to my Penpals. Check! This is one of my favourite things to do. I recently sent them Christmas presents (socks and a book mark each).
  19. Start to write thesis. Check! I did start to write, though I didn’t get very far at all.
  20. Do some public speaking. Check! I spoke at the aforementioned Autistica conference.
  21. Sell some unwanted lego. Check! I have too many sets lying around and did sell a couple.
  22. Start to budget my PIP payments. Nope. These are a type of UK disability payment. I’m still not sure how to budget them and I won’t get any whilst I’m in hospital.
  23. Try some more creative pursuits (drawing etc). Check! I did a bit of drawing, tried my hand at cross stitch (didn’t work), did some diamond paintings (my favourite) and a bit of writing.
  24. Enjoy summer. Nope. I was in hospital.
  25. Take part in some research projects. Check! I’ve found a fair few online that I’ve been a part of.
  26. Be more appreciative of my parents. Check! I think I’ve done this. I’ve thanks them a lot and even bought them cards and a gift occasionally (although money obviously isn’t the only way to show appreciation).

So, 17/26. Not bad but not great either. Here’s hoping I can do better this year! A lot of the goals will be the same, so I can complete the ones I didn’t in 2019 and keep up some of the ones I did achieve. Bearing that in mind, here are my 27 2020 goals:

  1. Complete mental health rehab.
  2. Live independently from my parents.
  3. Stay out of acute psychiatric wards.
  4. Keep taking my antipsychotic depot.
  5. Go to Disneyland.
  6. Go to the Warner Bros Studio Tour (finally).
  7. Beat my Goodreads set reading goal.
  8. Learn to cook.
  9. Figure out what I want to do with my life career wise and take steps to achieve this.
  10. Look into being a peer mentor.
  11. Keep up this blog!
  12. Lose some weight (and keep it off).
  13. Exercise regularly.
  14. Earn my outstanding Potter Running Club medals.
  15. Do another unrelated run.
  16. Be more appreciative of my Grandparents.
  17. Spend quality time with my cats, especially Panda (the eldest).
  18. See my friends R, N and H.
  19. Restart my MH diary.
  20. Continue to engage with therapy and MH services.
  21. Stop stressing about the little things.
  22. Do some volunteer work.
  23. Do some paid work.
  24. Keep writing to my penpals and add another one (if anyone wants to be a penpal, let me know!).
  25. Eat more healthily.
  26. Clear and clean up my laptop of files and photos etc.
  27. Come off one sleeping medication (as of now I take 4mg of Melatonin, 5mg of Diazepam and 50mg of Phenurgan)

Phew, so there are my goals for this year. Do you think I’ll beat 17? What are some of your 2020 goals?