Reacquainting Myself With Life

It’s no secret that I’ve recently been through a pretty horrible depression relapse. In all honesty, I can’t remember a lot of it. Apart from a few hours, I have a memory blank of a couple of months. I’ve been talking about it with my flatmate recently, reflecting on the past few months, and things really weren’t great. At the worst of it, I was struggling to talk, or move. My body just shut down.

I’ve been working hard, with the help of some wonderful people, and some new medication, to pull myself out of it.

Over the past few weeks (or maybe months, my concept of time is still a little squiffy) I’ve been very slowly participating in life again. It started very small – a trip down the stairs in the block of flats I live in, a visit to the GP, meeting up with a friend for an hour, but it’s grown, slowly, and I’m beginning to be able to do more things.

This week I went back to work. I haven’t been able to go to work since the end of November. I’m going back very slowly, with a huge amount of help and support from my job and colleagues, and started on just a couple of hours a week. It’s so lovely to be back – it’s great to be back in a routine. It’s amazing to feel useful and productive again. It’s wonderful to begin to feel a little like a person, rather than a shell, a list of symptoms, or a problem to be solved.

I am absolutely exhausted, though! Getting to work requires rather a lot of steps – working out what time to take my medication on an evening, in order to sleep properly and get up on a morning (this one is a bit of a work in progress), washing my hair, putting on some make-up, finding some acceptable clothes (preferably ones not covered in paint… though I did discover some blue acrylic on my skirt yesterday, oops), remembering everything I need to take with me, working out my food for the day, getting out of the flat, getting into the car, finding somewhere to park… all of these things before even getting into the office. They might sound like insignificant, fairly everyday activities, but depression makes everything more hard work. It makes everything take a more-than-would-be-usual amount of energy, and if that wasn’t bad enough, it also depletes your energy, so even before you do anything you’re already working with a reduced energy reserve. All in all, things that are ‘everyday’ to the average joe, can become a real challenge when depression gets involved.

Today is being spent in my PJs, doing the things I did to do from the comfort of a big blanket and some daytime TV. I am completely worn out.

I find myself getting frustrated. I want to be better. I want to be able to do things. I want to be able to work full time, to see my friends and family, and to keep up with my hobbies. I want to be active and productive. I want to be able to drive here, there, and everywhere. I want to be able to volunteer again. I want to be the person I have been in the past.

The reality is, though, I can’t do that. My body isn’t well enough, my mind isn’t well enough, and there’s little I can do about that other than keep trying to manage what I can.

I’m slowly poking my head out of a big, black, hole. I’m slowly trying to do things again. But I’m not ‘well’. I’m better than I was but I’m not ‘better’.

I have an illness, and I am trying to accept that (for now, at least), I have to work within the limitations of that illness. Hopefully, one day, I will be able to do more of the things that I want to do, but it’s going to take time. For now, I will keep trying to do the little things, keep working on recovery, and keep trying to reacquaint myself with life, bit by bit.

What Does Stigma Feel Like?

Can you remember in primary school and you did a project on ‘people who help us’? I can. I remember cutting and sticking smiling pictures of smiling police people, happy fire crew and kind-faced nurses. I remember colouring a surgeon in green and a doctor in blue. I remember displays on the classroom wall. We were taught which people would help us with what. We were taught that there would always be someone to help us if something bad happened.

At 22, I’ve discovered that isn’t necessarily the case.

Imagine feeling scared. Imagine feeling alone. Imagine feeling completely worn out by a medical condition which is doing it’s very best to kill you. Imagine feeling guilty for visiting the doctors, but doing your best to go to all of your appointments nevertheless. Imagine being passed from one professional to another – none of them wanting to take responsibility for your care.

Imagine arriving seeing a new professional, and being treated like a person, like a real human being (much to your surprise), only for them to find out that you have a particular health condition, and abandon you.

Imagine leaving appointments, feeling even more exhausted than when you went in, and completely and utterly let down. Imagine sitting in the car on the way home and not knowing whether to feel sad, scared, disbelief, angry, or just resigned to the fact that nobody will help you.

Nobody will help you because they blame your physical health on your mental health, your mental health on your physical health, and blame you for getting ill in the first place.

Nobody will help you because grief services won’t deal with mental illness, mental health services won’t work with grief, and physical health services won’t touch either of them, so you end up back at your GP – a tired and stretched GP doing their best to try and hold everything together.

Stigma feels horrible. It’s an immense feeling of shame. You want the ground to swallow you up.

We didn’t choose to become unwell. Myself, and my friends didn’t just sit there one day and think ‘hmmm, I’d quite like to have this condition, that sounds like fun’. We don’t want to be ill. We feel guilty for the amount of NHS time we take up.

We don’t need anyone to make us feel any worse.

There are some fantastic health professionals working for our NHS, but where do you turn when nobody will help you? Where do you go when the people who are paid to help you, don’t?

Stigma is defined as ‘a mark of disgrace associated with a particular circumstance, quality, or person’. Discrimination is defined as ‘treating a person or particular group of people differently, especially in a worse way’.

I’m writing to let you know that the stigma and discrimination associated with mental health conditions, is alive and well.

People with mental health conditions aren’t bad people. They aren’t second-class citizens. They’re not trying to drain NHS resources. They would much rather be meeting a friend for coffee than attending another appointment. They need kindness, compassion, and some understanding. They need treating like people, just like anyone else.

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Recovery: Things To Try

Today I got the news that I can (finally!) begin to return to work. Only for very few hours a week, and a very phased return, but this is such a huge step and so exciting.

When I left work at the end of November, I never envisaged being off for so long. In all honesty, I was struggling to live day to day and couldn’t see as far as bedtime. I don’t remember a huge amount from that time. I remember trying my best to get as far as the living room chair each day. I vaguely remember one or two people coming round. I remember telling people that I couldn’t keep living this way. I know that I could crochet – the muscle memory in my hands carried me through. I couldn’t do much else. I struggled to speak or move.

There is no quick fix for depression. There’s no straight line of recovery. There are better moments, then better hours, then better days. I haven’t reached much more then better ‘couple of hours’ yet, but I hope that one day I will.

I thought it might be good to share some of the things that I’ve found helpful, in the hope that maybe it might help someone else.

Get out of bed daily, even just to move to the lounge

Bed is a wonderful, comfy, safe place. Unfortunately, unless you have an inbuilt toilet, kitchen and workstation, you have to leave it every now and again. I’m no stranger to getting up, going to the toilet, and getting back into bed, but it can be really helpful to try and get out of bed each day, even if it’s just for an hour or two. It takes a lot of energy, and can be really hard work but the longer you stay in bed, the harder it is to leave.

Washing can be good, even if you just use wet wipes

Something which slips almost straight away when depression winds you, is washing. It’s hard work, it’s tiring, it takes energy. You also don’t really care about yourself and washing would constitute caring. But the longer you go without washing, the more gross you feel and the more you look down on yourself. If you don’t feel up to getting in the bath or shower, wet wipes can be a good investment. If you are low on energy, you could also try getting in the shower and just sitting there, letting the water run over you.

Take your meds

Meds can be a real pain. They can come with horrible side effects, and missing a dose can have even worse effects. I’m now on quite a combination of things and I wish I wasn’t, but the reality is that they are what I need to function at this point. It can be a real mental battle to take your meds, but it’s important to try and keep up with them – there’s a reason that you’ve been prescribed them. When my depression is really bad, I don’t have the cognition to work out what I’m taking and when, but I’ve spoken to my chemist and they now count everything out for me into weekly dossette boxes so it’s one less thing to worry about. If you’re struggling to work out what you’re taking and what time to take them, it could be worth asking your chemist if they do a similar thing.

If you struggle to book appointments because you don’t feel like you’re worth it, ask the health professionals you see to book them for you

I really struggle to feel like I’m worth enough for appointments, or deserve them. If I’m left to my own devices it can take half a day and forty minutes of persuasion before I will even ring the surgery, so it helps to have the nurses and doctors there do it for me.

Try to stick to ‘normal’ bedtimes and wake times (even if you don’t get up straight away)

This one can be tricky, especially when insomnia strikes and you’re off work so have nothing to get up for, but it’s probably one of the more important ones, because once sleep goes out of a normal pattern, it’s hard to bring back. For me, sleep is one of my biggest triggers, so I have meds to help me, but everyone’s different – if you are struggling with sleep it could be worth mentioning it to your GP.

When you’re up to it, wash your hair

Having clean hair can make the whole world feel better, but it’s hard work. Personally, I always wash my hair at night so it can dry while I sleep and I don’t have to deal with it. Also, if I’m low on energy, I sometimes just wash it over the bath rather than having to go to the effort of getting in the shower. I set myself a target of washing my hair at least three times a week. Sometimes this feels impossible and doesn’t happen, but it’s a nice thing to aim for.

Change your clothes every day, even if it’s just from one set of PJs to another

Some days you won’t get dressed, and that’s okay, but it’s good to at least change your PJs because it can help to make you feel more clean, and help to make you feel ‘normal’.

Leave the house most days, once you’re up to it (not every day – occasional PJ days are probably essential for human survival)

When I first left work, there was no way I was leaving the house. But as time’s gone on, I’ve felt more able to go out, and now it’s really important that I try to leave the house most days. Leaving the house forces me to get dressed. Sometimes I literally just walk to the post office and back, but a little bit of fresh air can do the world of good.

Crying is okay, so is not crying

It’s okay to cry. Sometimes it’s necessary. At other times you can’t cry… your body just won’t let you, and that’s okay too. There’s no  right or wrong way to have depression.

Try to keep your safe spaces clean and tidy (when you have the energy)

It’s hard to find the energy to clean and tidy but it can make everything feel so much better. You don’t have to properly spring clean everything, even lumping everything in one pile instead of it being all over the floor can make it easier to breath. It’s really hard to keep a whole house/flat/bungalow clean, so it can be good to have one room or space that you keep ‘safe’ or ‘clean’ and let the rest of your place do what it likes until you have the energy to sort it out.

Write or draw every morning

I have a notebook next to my bed with some colouring pencils and a normal pencil. Every morning I try to write/draw something before checking social media. Sometimes I have nothing to say or nothing in my head – but somehow stuff still comes out. I find it can be a good way of emptying my head, ready for the day ahead.

Stay in touch with work

My work have been amazing at staying in touch with me. It’s really, really helpful because it helps to ease the anxieties about going back. When I left work, I was unwell, I was unable to do my job, I was scared and very low… so thinking about going back was really scary. But work have stayed in touch with me, I’ve popped into the office a couple of times, and all of that has helped to prevent a huge anxiety wall from going up in my brain.

Crafternoons are wonderful things

I am ridiculously lucky to have some incredible, creative friends. Sometimes there’s nothing better than putting a giant plastic mat on the floor, pulling out some paints, popping something on TV, and putting the world to rights. It can be easier to talk about things when paint is involved, too.

Someone at the end of the phone can be worth more than they know

I have been known to come out of an appointment and text a friend saying ‘everything is awful and I want to die’. Everyone needs a friend who you can text that to, and who replies helping you come up with a plan. Sometimes all you need in that moment is to not feel alone.

Take a photo a day

I take a photo every day and post it on Project 365 and Instagram along with a sentence or two. I personally get a lot of support through this, but you don’t necessarily need to post them. It’s just a way to take five minutes out of life and do something a little bit creative every day.

Write, even if it makes no sense

I have word documents that I’ve written and not saved, others I’ve written, saved and never posted. I have a notebook that I sometimes write in, especially when I can’t sleep, it’s late at night, and I feel like the only person in the entire world. It doesn’t have to make any sense, it doesn’t have to go anywhere. Just write.

Find your paint

Painting (or art journaling in general) has made such a huge difference to me. Of course, not everyone will like paint… others will like music or sport or something. But find your paint, your escape from reality, and try and practice it most days.

Find your Blurt blogging

A few weeks ago, I picked up blogging for Blurt again. This has been amazing because I can do it from home, but it helps me to feel useful and have purpose. It’s also been really helpful in forcing myself to concentrate, and disciplining myself to work. Obviously not everyone can blog for Blurt, and a lot of people hate writing, but it might be good to find your Blurt blogging – something which you ‘have’ to do which gives you purpose (but who also understand if you really can’t do it).

All in all, depression is horrible, and there really isn’t an easy answer, but even when it feels hopeless and horrible, and you feel like you’ve tried everything you can think of and you’re doing your absolute best and nothing is getting better (believe me, I’ve been there, I’ve felt it, I still do feel it way more often than is ideal), even then, there is probably still one more thing you can try.

I’ll leave you with some wise words from Holby City, in the form of my art journal…

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Art Journaling

A few months ago, I started art journaling. I now journal most days, and I absolutely love it.

I’ve decided that one of my new life goals is to be one of those people who always has some paint somewhere on their body/hair/clothes. I do it for myself, not others but I’ve started to post some of my pages on 04.jpgInstagram, and sometimes also share them on Twitter and Project 365. People often thank me for sharing them, comment that they can relate, tell me I’ve inspired them to start journaling and share their journal pages with me. I absolutely love hearing from all of these people, it’s wonderful. I’ve shared it with my GP, and other health professionals a few times, which I’ve found to be really useful because sometimes I struggle to communicate with words, so paint can help. The response I’ve received, coupled with the amount I felt it was helping, but also challenging me, and some great sessions doing it alongside a friend, have inspired me to keep going.

Quite a number of people have asked me how they could start art journaling. I am by no means an expert on the subject (I make it up as I go along to be honest), but I thought I’d attempt to write some tips on how you could get started, and to answer some of the questions that people have asked me, so here goes…

What is art journaling?

According to Wikepedia, art journaling is ‘a daily journal kept by artists, often containing both words and sketches, and occasionally including mixed media elements such as collages.’. I wouldn’t really say I was an artist… to me art journaling is expressing myself in a vaguely arty way, in the form of a book, so I suppose the whole concept of ‘keeping a vaguely arty journal’ is open to interpretation, and up to you to make it what you want it to be.

The Book

However you decide to journal, you’re going to need to start with a book in some form. For17270804_1159074677538533_1120881872_n some this could be a lined notebook, or a book with black or coloured pages, others might like to do an altered book. You’ll also need to decide what size you want it to be, and what sort of binding. I personally use an artist sketchbook because the pages are a bit thicker, and I tend to use a lot of paint/glue/things, mine is A5 because I felt like I’d get overwhelmed with anything bigger, and smaller would be too fiddly, and mine is casebound but if I was buying a new one I think I’d get a spiralbound one because it’s exploding a little at this point.

Equipment

05.jpgOnce you’ve got a book, you need some things to help you fill it. I’m a big fan of paint – it features on most of my pages. I personally use acrylics, but I’m not really bothered about brand or anything like that. Sometimes I add water to it, sometimes I use it in a thicker form, I often paint over other things. You don’t need to use acrylics, though, you could use poster paint (which is usually cheaper) or any other paints that take your fancy.

A printer can be useful to print your own photos, or letters, or anything else you fancy popping in. Magazines can be good for those sort of things as well – free campus newspapers are a good start, or I often use the Aldi specialbuy magazines. You can always pick up gossip magazines pretty cheaply (or if you’re feeling brave enough to ask, you might be able to inherit some from a doctor’s surgery).

Wallpaper can be great for different textures and patterns. I’ve never actually bought any, I just collect samples from B&Q, Wilkos, Homebase, and The Range.

27.JPGIn terms of a hierarchy of journal needs, I’d put some form of marker/pen near to the top. This can be sharpies or felt tips… anything you fancy writing with. I started with some glittery gel pens which I picked up from Morrisons which are good because they wrote over paint. As time’s gone one, I’ve picked up sharpies in different colours and thicknesses, some metallic markers, and a white pen.

You’re likely to need some sort of glue – pritt stick for paper things, PVA for tissue paper, cocktail sticks, or bits of sponge, and bostik if you need something a bit more hardcore for sticking bits of CD or things like that. I also have Mod Podge, but I’m still a little undecided on whether I’m a modpodge fan or not.

You might like to use some other art things like chalk, pastels, pencils, colouring pencils, ink, graphite pencils, watercolour pencils, or anything else you might associate with ‘art’, but they’re not essential, it just depends on the sort of thing you want to create.

If you want to do more mixed media type things, it can be good to pick up random bits and bobs. I use a17092837_1151419201637414_765826869_o lot of found objects like sponges, cut up CDs, cocktail sticks or toilet roll – I just collect them when I find them and keep them in my ‘box of stuff’. I have other things in there that I’ve bought specifically, too, like ice lolly sticks, tissue paper, and string. Personally, I also love polyfiller – it’s not made specifically for art purposes, it’s for fixing hole in walls among other things, but it’s really good for creating different textures.

Another thing you might want to buy is some form of plastic sheet (if you’re like me and tend to journal on the floor…). I just picked up a kid’s party tablecloth from the 05.jpgsupermarket for a couple of pounds which does the job and makes it easier to clean up.

If you don’t feel like using a lot of stuff, or getting much out, then that’s okay, too! Do a sketch page, draw something and colour it in, print a few pictures and write something over them. I love messy journaling, but I know lots of others don’t, and that’s absolutely okay.

Where to buy stuff

A lot of people art put off starting a journal because of cost, but it really, really doesn’t need to be expensive. Personally, I do own a fair amount of artycrafty stuff, but I’ve been collecting it for about ten years. You really, really do not need to break the bank. You also don’t need to go out and 10.jpgbuy everything all at once, I tend to just pick up little bits as and when I feel like it (or as and when I have money…), and have built up my collection that way.

The Works is good for cheaper art bits. They also often have mixed media bits for a pretty good price.

As well as having wallpaper samples, The Range do a lot of art bits, normally at a pretty decent price.

Supermarkets often have a stationary/kids craft section now and I often find things there, whether it be pens/markers, or fun things to stick in. They also often sell glue and string.

Poundland sometimes do acrylic paint and often do washi tape or other things you can stick on.

WH Smith do a lot of traditional art things, sketch books, and some children’s art things which are sometimes cheaper and can often be quite fun.17236856_1159084200870914_1478726121_o.jpg

Hobbycraft is heaven in craft form. They don’t tend to do things quite as cheaply as The Range or The Works but they have some wonderful and exciting things which you can treat yourself to.

B&Q sell polyfiller, and have wallpaper samples. They also have lots of paint chips which you could use for the names or the colours.

I live in York, so I’m lucky that we have a lot of local independent shops. But there may well be some in your area so it can be good to have a potter. They often have owners who will chat to you and offer advice and tips, they might even know of local art/craft groups you could go to which can be great for meeting others and finding inspiration.

Inspiration

I am constantly inspired by those around me. There are some fantastic art journals on Instagram and Tumblr. Some of us have started using the tag #journalthefeels, but there are loads of other tags out there that people are using such as #artjournal, #arttherapy and 16990766_1147368452042489_1259755976_o.jpg#journalpages.

Whenever I find a quote or lyric that I relate to, I copy and paste it into a word document. It’s an ongoing thing, about four pages long now – others might write them in a book or something, I just find a word document easier because I can delete them when I’ve done them. I tend to find the quotes/lyrics on the usual social media sites (pinterest, tumblr etc.), through books that I read, or through songs that pop up on the radio or my Spotify discover.

Pinterest has a lot of journal prompts, too, if you’re struggling for ideas.

Top Tips

As I said before, I’m by no means an expert on all of this, but I’ve come up with a few top tips which are hopefully helpful:

  • Let your book evolve with you. When I started, my book was a bit more ‘formal’. The front page is my safety plan and there are other pages in there like ‘Coping With Flashbacks’, but as time’s gone on I’ve done it in a much ‘looser’ way. I don’t tend to do specifically therapy-type pages and just go with how I feel in07.jpgstead, because I find it works better for me. Others will be different though and will prefer the more ‘formal’ type of approach. You might start your book one way and then move in a different direction and that’s okay! Let it grow with you.
  • Do it for you, first and foremost. We spend so much of our lives trying to please other people, or trying to do what we think others want us to do. If you start posting photos of your work online, especially, it’s very easy to fall into the trap of trying to do pages you think others would like to see, or ones you think will get you the most ‘likes’. It can also feel like once you’ve started posting, you have to post every page. You don’t. This book it yours, not anyone else’s. Hate paint? Don’t use it. Not a fan of quotes? Don’t use them. Want to just paint a page black? Go for it. It’s your book.
  • Just start. Staring at a blank page or a blank book is super hard. If you’re anything like me, a white page invokes fear and ‘argh’ feelings. Get rid of the white, even if you don’t know what you want to put on the page.
  • Everyone is creative, and you’re not bad at art. So what if your school art teacher never gave you a decent mark? Who cares if the arty mess that you make on a page doesn’t fit your traditional perception of ‘art’? If you enjoy it then it doesn’t matter. If you find it to be a helpful way of expressing yourself, who cares what it looks like? I personally don’t believe that there is a single person on this planet who ‘has no creativity’, it’s just that everyone’s creativity looks different.
  • It’s never going to be perfect, so don’t even try to make it that way. I really, really struggle with this and it challenges me daily. I can always see ways I could improve things, or just think things are rubbish, but perfection is an impossible goal, so there’s no point even attempting it.

This has become incredible long, but hopefully it’s readable and helpful. I absolutely love seeing other people’s journals and hearing their ideas, so if you journal too, or this has inspired you to start – please share it with me if you feel up to it!

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It’s Nothing Personal

I have lost so many friends over the past few years, and over the past few months the number of people I communicate with has dwindled significantly. But as part of my ‘kick depression in the bum’ plan, I’ve been trying to meet up with one or two friends recently (and yes, I do feel guilty about this when I’m not back at work, but I’m working on that one…).

These friends have to live quite close by. They have to live close enough to me that I can drive to see them. That’s because I don’t have the concentration to drive all that far, and I also don’t have the energy to walk that far, so driving is good but only for a short distance. There have been one or two times recently where I’ve driven a little further to see someone and realised that it maybe wasn’t the best plan I’ve ever had.

They need to be friends who understand when I have to cancel at short notice. People who I feel able to say ‘no’ to (which in itself isn’t all that easy for me).

The friends I meet up with have to be able to understand that I might have no brain. I can’t really deal with crowded places, or going out much at all at the moment, because I can be very overly sensitive to noise and light. So ideally we have to meet up at someone’s house.

Once we meet up, conversation might not completely flow. This can be very time-of-day-dependent. There are certain times of day when I am less on the ball, depending on how much medication is in my system and what kind of sleeping meds I had the night before. But conversations can be stilted, I often forget words, and sometimes switch off when someone is talking.

I often find that doing *something* can help the conversation to flow (don’t ask me why). This can be having the TV on quietly in the background, watching stuff on YouTube, scrolling Tumblr, pinning on Pinterest, journaling, crocheting… it doesn’t really matter, but doing *something* can be good.

Some days, I’m really not okay. I really struggle to human. My head can be in a really dark and horrible place – I’m not in crisis – but I need understanding that I’m not okay, that I’m fragile, that I might cry. I need understanding that I’m not always feeling positive, that I don’t always hold much hope. I need people who can listen to me say ‘I want to die at the moment’, and can say ‘yes, me to, but let’s sit and want to die together, because that’s better than sitting and wanting to die alone’. Sometimes you don’t need someone to tell you it will get better, or be super positive or anything like that. Sometimes you just need to sit and talk, or not talk, and craft, and space out, and watch TV, and just not be alone.

All in all, that is a list of slightly specific conditions that any prospective friend-meeting-up session has to comply to. So it can be tricky to meet up with people, particularly when I haven’t met up with a person in a while and don’t know how well I will manage it. For that reason I often meet up with the same friend or two.

This is a very long-winded and round-about way of saying that I’m sorry if you’ve wanted to meet up with me recently and I haven’t been able to do so. I’m sorry if you see posts on social media of me with a friend, and feel like I just don’t like you, or I’m ‘putting off’ seeing you. It’s not personal.

I can do some things, but I’m not well enough to do everything, and I’m sorry if that means that I’ve cancelled on you, or not even booked in a time to see you. I have nothing against you, I’m just not well right now.

What do you actually *do* when you’re off work?

As  many people will know, I’ve been off work for a number of weeks, now.

I had a fairly major depression relapse at the end last year, and though my job is something which I love and find to be a really positive influence on my mental health, it reached the point where I was unable to do it.

Since being off, I’ve had a variety of responses from people. On the whole, the people I communicate with are pretty mental-health-knowledgeable, so thankfully I haven’t had too many comments which have made me roll my eyes/want to punch a wall. Nevertheless, I have had people ask me what I do with my day, and get frustrated when I don’t manage to do certain things. To be honest I have caught myself wondering similar things at times. Then today, I was listening to the radio and they were sharing stories of ‘National Sickie Day’, one of which included a man who’d got ‘fake diagnosed’ with bipolar disorder in order to take time off work (which makes me all kinds of angry).

Given all of that, I thought I’d try and share with you a bit of what I do with my time, and why it’s not really fun being off work (because trust me, I’d rather not be).

For the first week or three, I don’t remember much of what happened. I couldn’t really talk or move. I would move from my bed to a chair in the lounge at some point during the day. I crocheted a lot, but don’t remember doing any of it (the muscle memory in my hands is wonderful). I think I had the TV on. I assume I must have taken in some fluid, and perhaps some calories too. I know when my flatmate came home she would ask me a basic question, and it would take me thirty or forty minutes to reply. At some point my GP increased my medication (so I must have made it to the surgery), and that only made the lethargy and brainlessness worse. My brain and body just switched off. I remember a couple of people from the mental health team coming round but I don’t remember what they said. I don’t remember even looking at them.

One day, the day before a GP appointment, I decided I was well enough to go back to work so I was going to cycle there and back to prove it. By the time I got there, I couldn’t feel my legs. By the time I got back I couldn’t stand. I realised that maybe work wasn’t something I was going to be able to persuade her was a good idea that particular week.

Christmas happened. It was a weird week. I did a mini tour of people I knew a few days before. I can’t remember what I did on Christmas Eve. Christmas Day I went to Dad’s for the afternoon. On boxing day I was only awake for about 3 hours… it was a similar story the day after that. Time just kept happening and I just kept not.

Fast forward a few weeks to now, and I’m still off work while we wait to see what happens with the new medication I started ten days ago, but I’m doing a little better (or as someone said the other day – there are now ‘glimmers’ and ‘some smiles’). The exciting thing about psych meds is that you’re never entirely sure how they’re going to work. You also have to start them off small and titrate the dose up over a few weeks, so it can all take quite a while before you notice any change (positive or negative). When I first started them, I noticed nothing, then at the latest increase, I think I had nearly every single side effect going, so that wiped out a few days. I’m increasing again in a few days time so who knows what that will bring.

To give you an example of what I do with the days I’m not bedbound, today I woke up at a ‘work time’ I got up and went to the bathroom but I felt incredibly poorly and there was buzzing in my head due to last night’s medication making its way around my body. So I got back into bed and put some podcasts on for a few hours, waiting for it to go. I drifted in and out of sleep a little bit which resulted in some truly weird dreams (my brother got eaten by a gorilla, it was very traumatic!). Eventually I got up and tried to start my day. I needed to get to the chemist, because my body is currently reacting to literally anything (thanks new meds) and I wanted some advice on what else I could take (anti-histamines weren’t cutting it). I needed to drive there, and in order to drive I needed my brain to work well enough. However, as with every other day, having taken my morning meds I was mildly drunk for a few hours (although, that is beginning to improve slightly), so it was gone lunchtime by the time I made it to the chemist. I’m exhausted from my trip out. This evening I need to shower which always takes a while. I sit down in the shower now because I run out of energy to stand up halfway through. Eventually it will be bedtime. That’s an interesting one at the moment – on top of my body currently struggling to digest food without giving me pain, the meds I’m on make every single limb hurt, so I sleep slightly propped up on some big cushions, with every part of my body supported by a blanket/soft thing. Sleep is a relief when it happens.

Tomorrow it will start all over again. I have an appointment so that will be the trip of the day, I imagine. Some appointments are ones I can go to and come back from and that’s that. Others require a lot of mental preparation, and sometimes many tears afterwards; those appointments can take a whole day (or more).

Since taking time off sick, I haven’t had my haircut because I feel like if I can do that, I can do work. I haven’t done any fundraising for Mum’s fund, because, I feel like if I can do that, I can do my job. I feel guilty meeting up with friends, because again if I can do that, I should be able to do my job and the truth is, there are very few friends I can meet up with. They have to live within a very short driving distance because I struggle with the concentration to drive too far. They have to understand that I often blank words during sentences, so meeting up to have a chat can be really tricky. It’s much better to meet up and do *something* but that something should ideally be done sitting down because energy is something I have a very limited supply of.

Unfortunately, with a mental illness time-off-work stint, there’s a less clear-cut idea of when a person will be well enough to return than if you were off few flu or something (it would be nice if it was that simple). I will be off work for at least another few weeks while my medication (hopefully!) settles. Hopefully after that I’ll be able to gradually return.

I wish I was able to go back tomorrow. I miss the people. I miss the structure. I miss the routine. I miss having a purpose. I miss feeling like a person rather than a list of symptoms. I miss feeling like I’m worth something. I miss feeling useful. I miss all of it.

I don’t know how well this explains things to an outsider, because a lot of the time I hardly understand my condition(s) myself. My plea to you is please don’t take ‘fake’ sick days, because it only increases the stigma surrounding those of us who are genuinely unwell. Please don’t shame myself or my friends who are off work due to illness, or who are managing to stay in work, but struggling with engagements outside of work. None of us want to be this way. We want to be excelling at work, planning our futures, seeing our friends, going on road trips, raising money for charity, climbing the odd mountain, and spending time with our families. We want to be living but we’re just currently struck struggling with existing. We already feel guilty and frustrated with ourselves, and we know it must be frustrating for those around us too, but please don’t add to our guilt, because it just makes us feel worse. If you want to interact with us in any way at all, please try to speak to us with compassion. We will hopefully get there, it might just take a bit of time.

Time to Talk Day 2017

It’s Time to Talk Day.

On this day, we’re all encouraged to talk about mental health.

Now, as far as I’m concerned, this is a Very Good Thing. Mental health directly affects 1 in 4 of the population (so by extension, affects everyone), so it seems a bit ridiculous that it’s such a taboo subject. I’m not entirely sure why asking your loved ones ‘are you okay’ and genuinely wanting to know the answer is quite so tricky, or sure why it’s so difficult to answer the question honestly, and to admit when we’re not okay (and even using the word ‘admit’ implies a level of guilt), but apparently it is (and I’m not saying I’m immune from this difficulty, because I’m really not).

I am someone who works in mental health, volunteers in mental health, and lives with mental illness, I don’t keep that a secret (it would be sort of hard to when my job is a Peer Support Worker so the job title reflects the fact I’ve experienced illness). But despite all of this, and all of the years under regular GP appointments/services (sometimes… but that’s another blog for another day), I still struggle to tell people when I’m not okay. I struggle to tell people when my mood is dipping. I struggle to tell people when other aspects of my mental health are slipping. Like anyone else, there are some people who I find easier to talk to about these things, but even with those people I really struggle to initiate conversation, and I’m excellent at tripping off ‘I’m fine’ before I’ve even though about whether I am or not.

There are some conversations I struggle with more than others. I don’t want to hurt people with my illness, I feel guilty, I don’t want to put things on people, I don’t want to sound selfish or ungrateful. I am more than aware that I am incredibly lucky to live where I do, do the work that I do, have the friends and family that I do, and generally have the life that I do (mental illness doesn’t care about that, though).

I rang my Dad up last week; I needed to talk to him about something. We got onto the topic of where I was up to with work/meds/life. It was a hard conversation but a necessary one. We’re both learning how to communicate again. So many unsaid words are left hanging in the air, at times. He wants to ‘fix’ things, I wish that this whole thing was easily fixable. Time frames are frustrating at the best of times, but never more so than when you’re off work and services are stretched. Medication changes can take weeks/months to get right, and even then you don’t know how long you’ll be on them, you don’t know how ‘good’ you’ll ever get it, and you don’t know what impact it will have on your body long-term.

I have a number of friends who also experience illness, and it’s so hard to know what to say to them, too. What do you say to someone who literally doesn’t know why they should stay alive? Someone who is terrified by some of the things they’re thinking, hearing, or seeing? Someone who can’t see how wonderful they are, and is paralysed by any sort of food decision to the extent that they’re becoming increasingly poorly? You tell them you love them, you listen, you book in craft dates, you tell them how wonderful and how talented they are, you tell them you’re there for them, but you’re also painfully aware that perhaps that’s not enough, and worry that their body or mind won’t take it any more and they’ll die.

We shouldn’t feel shame. We shouldn’t feel guilt. We shouldn’t feel broken. We shouldn’t feel paralysed by fear of speaking. We shouldn’t feel judged by medical professionals (and yes, they do sometimes judge you, it does sometimes feel like they’re punishing you for being ill, it does sometimes feel like your mental illness is affecting the treatment of physical things).

Before I finish this, I also want to remind people that if you feel unable to speak about your illness, that’s okay. You shouldn’t feel guilty for what you do/don’t want to share. Having a mental illness, and having a day dedicated to talking about that illness doesn’t mean that you have to participate in the day, or that you should feel obliged to share or talk about things you don’t want to talk about.

If you do feel able to do so, I urge you to talk and speak to people, but please don’t just limit it to today, please keep talking, and keep listening.