Very privileged to have had my blog post on getting a diagnosis shared by Bipolar UK. Bipolar UK is a fantastic platform for blogs, helpful information and support systems. If your more of a social media kinda person you can also follow them on Facebook (and probably all the others I just refuse to take on any more social media than absolutely necessary!). Pretty cool and definitely check them out HERE!
I recently shared an interesting video around scars in the summer on my Facebook page which reminded me that due to the easy shareability of Facebook there are often really interesting videos, articles and infographics (love an infographic) that I find and share on my Facebook page but don’t tend to post over here. It’s also become more of a group than a blog so I encourage people to share their experiences too and comment on posts, if you’d like to join me over on my Facebook page just send a request over to https://www.facebook.com/groups/275143122675460/ or simply search P.S Bipolar and join the team!
For this weeks re-share I thought I’d share this post on medication side effects. I recently met someone who was super anti medication (he didn’t have anything which required him to take anything which I personally feel makes it significantly easier to be anti meds). I found it so bizzare people still felt so anti something which could be doing so much good for someone; as long as there has been shared decision making (essentially a Doctor being like ‘Hey, what are your thoughts on this?’ rather than ‘Hey, you’ll be doing this’) and the person is well informed, I think medication can be hugely helpful. I’m on a great regime now which means I’m far more likely to take it which also sort of works out for the Psych team so it’s a win win for everyone to have a treatment plan in which the patient is totally on board.
That said medication is still medication and I do have the odd ‘what if I’d be totally different and I’m oblivious’ but I’m far too happy and stable to take the risk. At some point I’ll want kids and that’ll be a good reflection point for medication. This post is a great illustration of why shared decision making is important and the extent to which I’ve worked hard to not just settle with the first thing given to me. I fully acknowledge the privileged position I have been in as someone with a good education and support system which has allowed me to articulate myself and my needs well and this is why advocates in mental health are so important. However, these huge numbers of side effects are why I feel confident in the ability of medication to do good, it would have been very easy to give up but I am glad i stuck with it and have found something that works for me.
Some people aren’t aware of this, another option is ‘died by’, this replaces the judgement with the acknowledgement that suicide is complex and the person suffered from something. It’s hard for someone people to understand the distinction but the best example I can give is that we would not say a smoker committed suicide when their smoking related lung cancer ended their life, we would say they died of lung cancer. In a way this separation is similar with suicide, the death was a result of a symptom and it’s important to acknowledge the symptom in order to remove some of the judgement, disdain and anger people have around suicide.
It may be a slightly difficult read and I am much more well than when I first wrote this post so a lot of my impulsivity and back up plans no longer apply but I think the below post from 2016 explores some of these issues well. Although I am now very well I have experienced and will likely at some point experience again the most horrific emotional pain. As a result when I hear someone has died by suicide my only feeling is empathy because I understand how much pain they must have been in. I know for those who have lost a loved one to suicide there will of course be many other emotions at play because the repercussions are so wide for those left behind but from the perspective of someone who has considered suicide at multiple times since being diagnosed I can understand how people reach this point.The language is important to encourage those who have not had an experience to consider the awful state of mind someone must be in to make this decision.
A few people have asked me recently if I can reshare some of my earlier posts for those who have joined me late in the game so for the next month or so I’m going to be resharing some of my earlier posts around Bipolar more generally that contain less (but only slightly) waffle about my day to day existence. These are hopefully more educational and shareable! Enjoy!
Here are my top 10 tips for getting the right diagnosis and accessing the support you need:
1. Try to see the same doctor every time and any time you feel your mood shift dramatically go and see them so they can get a sense of who you are and what you look like in different moods
2. Ask to be referred to your local mental health team for a psychiatric assessment. Unless you present to your GP in the middle of a crisis most Doctors tend to diagnose depression. This makes sense when you think about it, do you tend to go to the GP because you feel good? Not usually, but you will go when you start to feel low; without seeing your hypomania or mania it’s easy to see how a misdiagnosis can happen. GPs actually know very little about mental health compared to a specialist and are only allowed to prescribe certain medications. For example a GP couldn’t prescribe me lithium without it being approved by a psychiatrist so it really is helpful to get referred if you can.
3. Keep a moody diary, you can get templates online specifically for Bipolar and they’re a great way for you to see how your moods are fluctuating. If you’re already taking medications then ensure you make a note of this on your diary. A lot of GPs will initially prescribe anti-depressants which for someone with Bipolar are a no go as they can send you high; if this is reflected in your mood diary it will help a Psychiatrist to diagnose. Most Psychiatrists will initially ask you to keep a mood diary for a month to get a sense of how you’re feeling so you’ll cut time if you’re already on it.
4. If you’re comfortable doing so then speak to your friends and family and ask them to keep note of your moods too. To save arguments you might want to ask them to keep their notes private from you until you need them, I always argue I’m just happy when I’m starting to go high and then sheepishly apologise later when I realise they were right all along.
5. Discuss with your family about what you want to happen at different stages. For example if you can see that at points you can be so unwell that admission would be good for you then make that arrangement when you’re well. You will never want to be admitted so it makes it much easier for your family to make that decision if you’ve asked them to when you’re well. It sounds terrible but your chances of a diagnosis improve in a ward setting where they can see you in crisis and can monitor your moods more closely
6. Use community support that is offered to you, a CPN for example is really helpful in getting a diagnosis as they can see you more frequently and get a real sense of who you are and how your moods change. CPN’s will report back to your Psychiatrist and are particularly good for feeding back an elevated mood which you might otherwise not have picked up on yourself or raised with your Psychiatrist.
7. Engage with services, it sounds gross but the more willing you show the more support is offered to you. The NHS are very pro responsibility, this means you need to take ownership and help yourself, if you don’t and are deemed to have capacity then a lot of support is withdrawn. It sounds unfair and in some circumstances it is but if you show that you are willing to try then services are much more likely to be sympathetic. An example would be my constant changing of medication, I have been a royal pain the bum in my refusal to settle with a medication which doesn’t feel right but by making all of my appointments, taking mood diaries and following a WRAP plan I have proved that I am not being deliberately uncooperative and as a result they have pandered to my stubbornness surrounding medication.
8. Try different forms of support out and then dismiss the ones that weren’t useful to you but crucially don’t rule anything out initially. Medications will generally feature in a diagnosis of Bipolar but these can include a range of anti-depressants (rarely), anti-psychotics, mood stabilisers and anti-anxiety medications. At the beginning I was loathe to take anything extra on top of my mood stabiliser, these days I recognise that I can sometimes curb an episode by taking an anti-anxiety medication or sleeping tablet for a few weeks. I was also offered therapy but found that I was able to articulate my feelings to my CPN effectively without the need for a therapist but some people have found this outlet very productive; without experimenting I wouldn’t have found the right plan for me or felt satisfied that it was my best option.
9. Similar to point 9 give treatments time to settle in and take effect. You might find that something that makes you super drowsy at the beginning eases off after a week or two. When I first started taking Promethazine for anxiety I found it relaxed me a little too much and I had to take it at night, now it’s settled a little I can take it in the morning and my body is tolerant enough for it to just calm me if I’m feeling overly anxious.
10. Listen to your gut! My mum instilled this in me from a young age and it is exceptionally useful in this instance. If your gut tells you you don’t have the right diagnosis then listen to it and discuss this with your support team when you’re calm. If you’re being told to stick out another week on a medication that is making you feel terrible then explain this rationally to your team. My gut has come in handy (aside from the IBS) many a time, from when I knew something wasn’t right with the way I was feeling at the beginning to refusing to accept weight gaining medications. As long as you have capacity and explain your thought process calmly and logically it must be taken seriously. As with anything in life a carefully thought through and explained argument will go a lot further than an over emotional and chaotic one!
I’ve been thinking a lot recently about self-care, that’s right, the millennial, snowflake obsession with self indulgence. Or not. It still baffles me that millennials seem to have taken a hit for what is essentially 1. wanting all people to feel included, represented and safe to live their lives and 2. prioritising good mental health practises and looking after their wellbeing. Self care is hugely important for this generation where we pay extortionate amounts of rent (i calculated I’ve spent £56,000 in 7 years which makes me feel a tad nauseous) and will probably still be working as we crawl onto our deathbed. If we are going to spend most of our lives working (and lets face it if you’re in healthcare or the charity sector you probably will) then at the bare minimum we should be investing in our mental health if we can’t invest in a home.
Self care is often viewed as a luxury but really it’s just common sense, that’s not to say everyone has regular time to do so but it should still be a priority. From a selfish perspective it allows us to recharge and feel calm and grounded but even altruistically self care allows us to be present and engaged with those around us. Self care is also about insight and the ability to reflect and vocalise your needs. Last week was ridiculously busy, i did long hours at work to make up some time i was having off and then a heavy bout of socialising; all nice things but pretty full on, particularly for someone who lives alone. These days i really notice that i feel pretty stressed out when i don’t have the option of having down time on my own, it leaves me feeling a bit claustrophobic and anxious. I also find bitty days and being busy in lots of areas difficult, last Wednesday i had an important meeting all day and then a 30 minute gap to rush to a hospital appointment where i manged to lose myself in a maze of corridors leading me to promptly burst into tears on arrival. Luckily for me it was therapy which is the best type of appointment to arrive to if you’re going to start crying when you get through the door. Over the weekend i spent 6 hours travelling and when i arrived home on sunday was straight out the door to a choir rehearsal which took place at work and required me to get in my polite, being in public headspace.
On Monday i attempted to cram in an early doctors appointment before work where they refused to give me my medication based on an inaccuracy in a letter sent over by my psychiatrist and again i burst into tears. This is a lot of crying for a 7 day period so i figured i probably needed time out, i had lunch on my own at work which because i was anti social and frazzled when i first began working there has just become a norm and people leave me to it. In the evening i had planned to run but instead closed the curtains, got in comfy clothes and watched back to back love island (love it or hate it it’s good escapism). This might not be the luxurious bubble bath with a glass of wine that’s used to depict self care but sometimes self care is just about recognising when you need a breather. Having spent two nights having anti social evenings where the most i achieved was making a chilli before i crashed on the sofa i now feel significantly better.
This downtime not only means i’m not on the brink of tears at any given moment but it means i feel clearer headed at work and more present. It’s not just about recognising for myself when i need time out but it’s also about acknowledging that those around me need time out too and it’s ok for them to vocalise that. One of my best friends and i send regular voice notes on whatsapp which have become part of my morning ritual on the bus to work, this recently amped up after a break up where i struggled to not sob through my journey and she therefore felt obliged to distract me for the duration of my commute. Now i’m out of the ‘i literally feel so awful i cannot possibly be left in my own company’ and am more ‘i feel sad but have accepted this situation’ the voice notes have lessened which is probably more healthy. With my ridiculously over socialised week i paused all communication and sent her a voice note yesterday explaining what i’d been up to and that i felt totally fried. She in return texted me (literally unheard of) to explain she also felt fried and wanted to pause our daily voice notes and swap to a weekly chat that didn’t feel so overwhelming. Good self care people!
All of this has encouraged me to reflect on firstly how self aware i am these days that i am able to mentally check into my needs so easily and secondly that this is a universal issue, not a Bipolar one. Bring on the millennial self indulgence!
Some things i consider to be good self care:
Time away from people when needed
Listening to ASMR (google it people, you’ll either find it weird and creepy as hell or amazing)
Speaking to my Manager about working out of the office when i feel overwhelmed
Reading and turning off all electronics
Doing my gratitude journal in the evening
Not staring at my phone until the brink of sleep but reading and meditating
Meditating, even if i’m rubbish at it
Going for a walk and being in nature, i hate town
Catching up with friends – yup sometimes i do actually want to engage rather than retreat
exercising – reasonable amounts though people, lets not go overboard
So I’ve been working on some paintings as part of a series on my Bipolar, I wanted to convey that firstly the moods could be separated to a minimum of 5 categories and secondly that there is a lot of nuance within these moods. For example whilst ‘Mania’ is bright and colourful and exciting it is also very chaotic with an inability to focus, hence lots of bright colours and punchy patterns. For ‘Anxiety’ I wanted a sense of sharp objects and darker colours but also some elements of beauty because although I fricken hate anxiety I also acknowledge that it allows me to be more compassionate and understanding of others with similar experiences. I’ve also continued a gold theme throughout to indicate that although some of these feelings are uncomfortable and I have mixed emotions around them they are also a part of me and what makes me wonderfully unique!
From the 1st-7th June is National Volunteers Week and as a Voluntary Services Manager this is a big deal on a professional level but for me it’s also a personal one too. It’s a moment for me to acknowledge how far I’ve come; it’s easy when work is hectic and my love life is a mess to lose sight of what I have achieved in the past year and a half but as I was giving a speech to a hundred volunteers it made me realise that I have totally smashed it.
In my speech I shared that I had started out in Voluntary Services at the recommendation of my CPN (Community Psychiatric Nurse) who essentially was like ‘you kind of need to be doing something with all this free time…’. He was totally right, my hair was hacked off from a manic moment of stupidity, I’d gained tons of weight which I was very self conscious of and my confidence was so low I hated going to the shop for milk. I could barely look people in the eye (unless I was manic in which case I was looking people in the eye waaay too much) and that just wasn’t me. As you may have noticed I’m pretty open and chatty and all of a sudden I was this meek, terrified shell of a person. I applied to volunteer and when the Manager eventually got back to me I noted she clearly had a high workload and might need a hand. Because I’m drawn to highlighters, stationary and a spreadsheet, supporting with admin seemed like a good start. The Manager talked me down from my first instinct which was to fill every single day of the week with volunteering and we settled on a few hours a week of admin for Voluntary Services.
Since graduating I’d been completely frustrated by my inability to do anything, finishing my final year of University whilst in a psychiatric Day Hospital had been a push and I remember sobbing over the fact I could barely retain a sentence let alone write a paragraph. I’d always been pretty academic and I had already pushed through a difficult period when my boyfriend at the time had become unwell in my second year of University, I was determined not to fail at the final hurdle but it was a huge struggle. When I eventually graduated I’d given myself 6 months to get on top of my mental health and then I’d start work, my friends will tell you I love a good (and often unreasonable) deadline. My CPN did a kind of mumbled ‘that seems unlikely, you may need to readjust your expectations…’ which I ignored. When the 6 months was up I applied for jobs and got interviews but was so terrified at the prospect of being expected to literally turn up every day or be fired that I didn’t make most of them. I was still hugely struggling with my insomnia, self harm and suicidal ideations that it seemed absurd that I should manage that as well as a job, it was a job in itself.
Like my CPN said my expectation was way off and 6 months ended up being about 6 years, disappointing but he was also right about something else, volunteering was life saving for me. Volunteering allowed me to build my confidence and get comfortable with my skills again without the pressure of being paid. I was expected to come in but I wasn’t obligated to and that felt far safer and relaxed than paid work. If I slept terribly we just changed the day I was due in and if my seizures were bad or my stomach issues weren’t great I just came in later in the day to accommodate that. The flexibility allowed me to become more consistent because I didn’t feel any pressure from anyone I volunteered with. Both Managers I had during this time supported me fully and kept me in check, if I was a little high (which by the way meant I was pretty efficient and an absolute filing machine) then they simply kept tabs to make sure things were ok.
Eventually I built this up into part time hours and then after a few years became paid as an Administrator. Since then I’ve been a Voluntary Services Recruitment and Training Coordinator (worlds longest title), a Voluntary Services Coordinator and now a Manager. I feel so passionate about volunteering because I’ve seen the reciprocal benefits first hand. Of course volunteering is about giving back and creating meaning for those you support but it’s a two way street. Volunteering also allows us as an organisation to engage with our community, form connections between volunteers, reduce loneliness and isolation and support people with building their confidence and skills. Volunteers are integral to the running of organisations, particularly charities and smaller companies which are so reliant on the generosity of local supporters.
As I looked around during my speech on Sunday I saw so many smiling and reassuring faces, volunteers that I get to spend time with daily, weekly, monthly and even once a year, but all amazing people that I truly consider part of my team. It made me realise how hard it is to share our stories and life experiences in setting which aren’t mental health orientated, even if they are mental health supportive. In the past I’ve been happy to share my story but in my new job I’ve worried about how people will perceive me and my competency. Sharing my story to a room full of people who weren’t involved in mental health was daunting but the response I had afterwards reconfirmed my belief that we all share a common humanity. The number of people that shared their own stories with me afterwards was amazing and reminded me that we all have life experiences which shape our personalities and intentions in the world. It’s easy as a member of staff to feel you need to put on a front in order to seem capable but the reality is that by sharing your truest self you open yourself to connecting with people on a meaningful level.
For National Volunteers Week I take a moment to acknowledge the hard work I have put in to building my career but also the amazing volunteers I get to support every day and that support so many fantastic charities and organisations in my local area. For anyone that is considering volunteering I’d highly recommend using the Do-it site (No it’s not a Nike website, that would be an odd thing to recommend), It’s a great resource for finding volunteering opportunities in your area, click HERE for more information.
Please do feel free to share as I’d love the world to be volunteering but I’ll settle for encouraging the smaller number of people within my network!
As many of you will know this week is mental health awareness week. I’ve been pondering on what to say and came across the below whilst stumbling through my hard drive last night looking for my CV. The below letter was written to be submitted to the ‘Recovery letters’, part of a collection of letters written by those who have had mental health issues to those currently suffering. All start with ‘Dear you’. It seems well timed not only for this week generally but for me personally at the moment to remind myself that whatever is going on for me i showed up when it was hardest to and i continue to show up every day and i should be very proud of the work I’ve done to do that.
You will most likely have already been told on numerous occasions that ‘it will pass’, it will ‘get better’ or that ‘you will survive this’. If you’re anything like me you’ll find these kind of platitudes annoying, you’ll think ‘don’t tell me i’ll get through it, how can you possibly know that?’. You may, like me, find these phrases condescending, like your grief is something to wade through until you reach a definitive end point, the holy grail of sanity and insight that could only be obtained through mental torture. You may already know that the likelihood is that you will get better, you’ve probably seen the posters of celebrities sharing their stories and notifications bursting onto your newsfeed of people who have been and conquered depression. You may know it, but you may not feel it. We talk about ‘fighting’ depression but in doing so we lose sight of how well armed our opponent is, how well equipped our nemesis stands with our inner thoughts of self loathing and anger. Depression is fluent in your Achilles heel and will twist your own words until they boomerang back to you, battered and bitter and bruised.
So give up the fight, not forever, but for a moment. Depression is exhausting and twisted and it’s ok to say ‘today i don’t want to fight, today i want to stay in bed, or pace the floors, i want to cry and get mad, i want to feel frustrated and defeated, to feel seething and consumed, today i am going to sit with and accept that i feel this way’. It’s not defeat but a very brief truce. Fighting is hard work; it’s keeping calm, trying to do dishes, trying to distract yourself, taking a walk, taking a nap, taking a pill, eating something healthy, eating something. It’s trying to go to bed on time but not too early you can’t sleep, it’s having a bath but not for so long you’re lost in a puddle of your thoughts, it’s mindfulness without too much mind on the fullness in your head. It’s exhausting. So today you can pause the internal monologue and just accept where you are. It feels awful and it’s ok to acknowledge that, you can set aside the pep talks and motivational speeches for today and simply be. You can know that one day it will feel better but right now it doesn’t and that’s frustrating and unfair.
At the same time however, take a moment to acknowledge the fact that you showed up for the day, it could be in the pyjamas that you haven’t washed for weeks with your hair in a mess and fire under your skin but you showed up nonetheless. People may tell you to wash your clothes, clean your hair or meditate but they may not realise you opened your eyes this morning and are still here this afternoon and that’s amazing. You know it will get better but today you are still on your journey and you are learning and growing and whilst it may not feel like it that is succeeding. Don’t berate yourself for things you aren’t doing, the wellness app you didn’t download or the walk you didn’t take. Acknowledge and marvel at the most courageous thing you did today, you stayed.
I bonded with the beautiful Zoe at work and our shared passion for mental health awareness has been a gem. Following a recent break up she’s been doing a little ‘you alright today?’ head nod when I come into the building which has been much appreciated as have the lunches during which I’ve word vommed for 20 minutes before asking how she is. When we first met she showed me some videos with me which I wanted to share.
‘Hey! I am a friend of Hannahs. We met at work and bonded over our common interest in mental health, Mari Kondo and living in Cambridge! I love Hannahs blog, particularly her honesty and realness about life! I love that everyone is different, with our perspectives shaped by things that have happened in life along the way! Last year I was living in Florida, I recorded this video about perspectives after looking at a sign about rip tides. I hope it encourages you in some way!’