Creative Writing: Illness

Now as you might gather from the title, the creative writing that follows was difficult to write, harder to edit, and has been almost impossible to share. While I do on occasion write happier poetry, a lot of this writing was done, at least in draft form, while I was experiencing the worst parts of my illnesses. Which generally means I am not able to think of the positive nuances of being chronically sick. I promise to try to write more of that stuff soon as it’s not all bad I guess. Again,  I welcome critique but please especially with this, be gentle with the criticisms.

I will say that I was inspired to share this stuff because I finally watched the documentary ‘Unrest’ by Jennifer Brea. It’s heartbreaking, empowering…it might not be an exact match for my experience of ME but it’s an experience and seeing something so raw and true meant the world to me. So go and watch it, it’s on Netflix.

Filled

They say pain isn’t forever
Suffering comes and goes
But when hope fades and faith disappears
What else can fill me?

Symptomatic

Fog
It comes like treacle
Moving slowly, so slowly
Until suddenly
It’s swallowed everything
Fog
It devours
My memories, my speech
My own damn thoughts
My words
Fog
Closing in, growing thicker
It steals my understanding
Of how the world works
The very basics
I want coffee, but how do I do that?
How do I finish my sentence?
Was I even talking?
Fog
How can I find my way
When the shining guiding light
Is absorbed?
Fog
Chokes me
That goddamn fog

P.E.M

When it hits
And it will hit
It comes hard, it comes fast
The sheer weight
Drags you to the ground
Hooks and barbels
Pull
You should’ve expected it, should’ve planned
But fuck pacing
Push on
You can make it
The sofa is soft, cushions and blankets
Should make it better right?
That dead weight
Not just pulling now
But pushing
A collapsed ceiling, weighted down
It hurts, it aches, it kills

When it hits
And it will hit
It comes hard
It comes fast
Flare

(PEM stands for post-exertional malaise and is a driving characteristic of ME)

Chronic

Always there
I open my eyes and you’re there
My longest relationship
Never wavering
You won’t leave
Who am I without you?
These days I struggle
To even remember
My ever-present companion
I’ve tried to break up
But you always come back
I don’t fight hard enough?
Maybe
Maybe I’m tired of fighting
You’re there
Closer than my shadow
Growing larger
You strike my body
Inside to out
Inflicting
Chronic

Seesaw

I heard once
That bipolar is like a seesaw
Like in a children’s playground
I can see why they believe that
What goes up
Must come down
Hell, maybe I’d agree
If that seesaw
Went up to a burning star
And fell down
To the Underworld
Up. Down. Destruct.
Also
That seesaw?
Put it on a roundabout
That’s what they don’t tell you
It’s up, down, side to side
Loop the loop
Bipolar
It’s a whole damn fairground.

Where I’ve Been + Updates

So, as per usual, there’s been a huge gap in my postings. Several things have changed in the last 10 months that honestly, I’ve barely been able to process it myself, never mind analyse and share it.
If you’ve read this blog, you will know that I have a veritable smorgasbord of chronic illnesses vying for my attention right now. Well, this year, after seeing a rheumatologist, I’ve also added fibromyalgia and joint hyper mobility syndrome (although in the information he gave me, it also called the condition Ehlers-Danlos syndrome, hyper mobility type. I don’t want to put words in his mouth but it would explain one of the other weird stuff, like my weird skin, my ribs shifting into the wrong place etc.). I mean, if I started putting the acronym for these things after my name, I’d look super clever.
Sigh. Have to try and laugh right? But the other change that’s happened, I’m still really struggling with. I have been put on long term sick from work, as something was constantly kicking my ass and stopping me putting out quality work. Now, why am I struggling with this? Well, there are a number of reasons (though I am annoyed at myself for many of them, as there’s a lot of internalised ableism going on in my head). Forgive me, but I’m going to use this blog post to try and work this stuff out.

1. I judge myself on what I am able to do. For most of my life that meant judging myself wholly on my grades. I studied and worked and pushed as hard as I could, and that was for all tests, including mocks and small class assessments. Despite this, I have cried at every results day because I’ve never done “perfect”. I think this comes from being told at a young school age that if you work hard, then you’ll achieve your goals. I’m pretty sure everyone was told similar? Well, I wanted to be a doctor so I knew what that meant in terms of what kind of grades I was competing against. And when I got what I did…clearly I didn’t work hard enough. Right?
2. This next part is going to be difficult to write. Hell, I’ll probably delete this whole thing. Basically, I have long held, unshackling sense of self-loathing. Psychologists and psychiatrists have asked me when it started, why I believe these things about myself but the issue is I don’t remember any other way of thinking about myself. So to live with these beliefs, I have had to frequently try and distract myself and prevent myself from getting lost in those negative (and loud) thoughts. When you have work to do, this is relatively easy as there’s always stuff to be doing. However, being off sick means I’m alone a lot, and I struggle to get out and busy as 1) many things cost money which I have less of now 2) I struggle to get out at times because irritatingly I *am* sick so even things that I can do for free (nature, National Trust) it’s difficult-impossible to get there, enjoy the space, and get home safely.
3. To get back to work, they need to see that I am well enough to make it back full time, without the hours making me sick/relapse. However, it is actually becoming pretty difficult to find a voluntary position that a) isn’t physically demanding to make my pain and physical fatigue increase b) is more than just ~3 hours one day a week (which isn’t a decent representative of my work week). I tried various websites and local charities but after applying for a few different ones, I’m hoping I might have the answer (see below).

As it is, I don’t currently have an answer to most of this (not exhaustive) list. I’m having a lot of doubts regarding what I can and can’t do. All these conditions interlink with each other (physical to mental and vice versa) and I’m so scared that I won’t be able to handle full time work again. I don’t know, I hope  I can, but there’s so much stress and constant deadline after deadline. But I love working where I do, I don’t want to have to find something. I’ve spoken with some friends and I know some people are happy working somewhere they don’t care about and the money is enough as they can do do fun and exciting things outside of work hours. I don’t know if it’s because of my weird brain, or just my personality but that’s not enough for me.

However! I don’t like to end on a sad note if I can possibly help it so I’ll end this by sharing some recent good news (and the start of my road to going back to work). I’m going to be volunteering as an Historical Engager for the National Trust. I am pretty excited, I love history, and I’m looking forward to hearing more about the property itself (Anglesey Abbey, if you’re interested).

I’ve wanted to apologise to my friends, I’ve definitely not been as active in pursuing hang-out times. And it’s taken its toll and I miss y’all so much. See or speak to you soon I hope.

PS I’ve been think

 

Bipolar & ME: Part 3. Treatment

First off: apologies for the gap between postings. I’ve been a combination of on holiday, depressed, hypomanic (not “full” manic though, yay), stressed, ill, and fatigued/exhausted. I will try and be better. Anyway, onto the blog post!

Treatment!

Well, where to start. Like any mental illness, most kinds of treatment can be broadly split into two:

• Talking therapies, including
  1. CBT (Cognitive Behavioural Therapy)
  2. CAT (Cognitive Analytical Therapy)
  3. Psychoeducation Groups
• Medication, including
  1. Antidepressants
  2. Mood stabilisers
  3. Antipsychotics
• “Other”

By no means is this list exhaustive, but I’m just going to cover the ones mentioned because not only are they the most common, they’re also things I have either knowledge or direct experience of.

NOTE: I think I’ve made the point in earlier posts that mental illness can present in varying ways. We are all individuals, even if we have the same illness. THE FOLLOWING INFO IS JUST MY KNOWLEDGE AND EXPERIENCE ONLY. SPEAK TO YOUR PSYCHIATRIST/PSYCHOLOGIST/DOCTOR ETC. BEFORE CHANGING MEDICATIONS OR TREATMENT.

• Talking therapies

So I admit here and now, I have not had the best experience of talking therapies so far. I tried counselling, was referred to CBT (that went terribly, though partly because I don’t think my therapist and I “gelled”, I might not have been ready for it, or whatever…but I had three sessions and was just sent back to my GP), tried ACT (Acceptance and Commitment Therapy) which was a group trialled at my university. It went better than CBT, and a lot of the ideas behind it made sense, but I’m not sure I managed to take enough of it on-board seeing as it was during my final year of university and I was basically one huge ball of stress/fatigue/badness.

I don’t know if it’s relevant, but I tried all of these methods before my eventual diagnosis of bipolar. Since diagnosis, I have been to a Psychoeducation group, and am on the LONG waiting list for CBT (and eventually CAT) with a clinical psychologist, as opposed to a wellbeing practitioner or therapist. I’ll update the blog after I have the treatment with my feelings on how it went, but I don’t expect it to be soon unfortunately). Since I have not had a full course of CBT or any CAT, I’m just going to provide some links so you can read about it from people with more knowledge on them:

http://www.nhs.uk/conditions/Cognitive-behavioural-therapy/Pages/Introduction.aspx

http://www.acat.me.uk/page/about+cat

The Psychoeducation group is pretty much what it sounds like; a group that helps educate you on your psychiatric/psychological condition. There was a group of us, maybe 9 or 10, who had all been diagnosed with bipolar (mix of I, II, cyclothymia), of varying lengths of diagnosis, treatment, experience and severity. This was particularly useful as I’d only been diagnosed for around a month or so, so learning what things I had been experiencing were actually due to this illness was eye-opening. You might expect this kind of thing to be incredibly depressing but surprisingly, I didn’t find it so. Yes, there were topics that were covered that weren’t exactly pleasant but we were given so many resources and a variety of methods to try and help us cope. No, they didn’t all work, and the paperwork we were given was a little overwhelming but I appreciated the variety because many of the things have really helped me. I know that for many people however, much of this course was too basic, as they’d lived with it so long that they knew all the symptoms and had tried most of the things we were recommended. I hope they didn’t think it was a complete waste of time, because their knowledge and experience was incredibly valuable to me. According to a talk given to the group I attend run by Bipolar UK, Psychoeducation groups have been shown to be one of the most helpful and beneficial groups for bipolar patients, in terms of helping them stay better for longer (I won’t go into the full details of that talk, though it was very good…maybe in another post).

• Medication

Ah. If there’s anything that causes more controversy, stigma, and newspaper articles than psych medications…well, OK, there are a lot of things that cause that, but you catch my drift. There’s a lot of misinformation, scaremongering, and stigma about medications for mental illness, and I can’t deny that there’s probably a whole lot of over prescription going on. (The reasons for that last thing are many, but generally underfunding of the mental health sector and understaffing of specialised doctors and therapists are two big ones). Medications are not the be all and end all, and god knows they don’t solve everything. However, for some people, medication can/will save their life. And for me, they allow me to live relatively safely and ‘normally’, hold down a job, etc. There are still life stressors that affect me and I have to watch out for them, but even when I do get ill, it’s significantly less severe than when I was not on medication.

Also, some medication carries more stigma than others, so don’t be put off if medication that helps you has a bad reputation from people that don’t understand, or have had bad experiences on it. For example, as well as a couple other medications for other ailments, I take Lithium and an antidepressant, Venlafaxine. Now Lithium is very well known, and it’s been around for a long time. It’s also very cheap, and has been shown to be incredibly beneficial at treating bipolar, and also significantly reducing suicidal behaviour. It also has a number of side effects, and can cause serious damage if not monitored closely (kidney and thyroid damage or even failure). Now I admit, I was scared off lithium initially. I was offered it a few years ago and I was pretty much of the mindset that I would try anything but that. This was, in part, due to the stigma, and to the research project I had done at university on it. (I do wonder what might have been different if I had tried lithium when I was first offered the chance, but there’s nothing that can be gained from wondering “what if?”). So whilst I heartily recommend researching medications before you decide to take them, don’t be so informed that you scare yourself away from something that could potentially really help you.

I think a good rule of thumb is if the side effects make you feel worse than the illness itself, they’re probably not for you. However, it is often very difficult for the ill person to notice if they are feeling better, as we (ill people) have a tendency to see and focus on the bad far more than the good. I had someone tell me they could tell exactly when my medication was changed to my current ones because I was so much better. I hadn’t realised it was such a big difference so their perspective was really helpful.

• “Other”

Please notice I’ve put this in little “air quotes” as these are not prescribed treatments, but anecdotally, there’s sometimes things we can do for ourselves to encourage longer times in remission.

While many people with bipolar and other mental health illnesses self-medicate using alcohol, illicit drugs etc., I can’t say I can recommend either of these things. What I can say is that it’s completely understandable why people go down this route. But I’m going to try and focus on some other ways I/people/you can use to try and ease the struggle of mental ill-health.

It helps to have things that you can throw yourself into when you start feeling the first signs of depression or (hypo)mania. Depending on your personality, these things will differ hugely, and I have different activities to help with different directions of mood. Colouring helps with creeping manic symptoms, as it gives me something to completely focus on, and I can jump to any number of different books, colour schemes, pages, but it often helps my head slow down eventually. When I’m feeling the beginnings of a downward mood, I try and go skating/go to derby practice (if physical health allows), or go for a walk, or go throw my phone folder of silly pictures I’ve saved and send them to close friends to strike up a conversation. Basically, anything to stay out of my head/bad thoughts, something to stop the downward spiral before it fully starts. If I’m veering towards the manic side however, these actions would be things to avoid, as sport/exercise is actually a big thing I’ve noticed sends me into hypomania (mania, before my medication).

 

I’m sure a lot of people will see the things I’ve listed and think it’s twee or useless things they’ve been told before, but all I can say is that they’ve helped me. I think roller derby has been helpful for me as the continuity of practice and knowing my attendance is monitored helps me regularly go out and mix with people, and skate/do physical activity when possible. Structure is hugely important to me, so a hobby with classes or regular practices was a big bonus and ones of the reasons I stick with the hobby even when it seems “crazy” for someone like me to do.

 

Obviously nothing in this section is actually ‘treatment’ per se, but I think living with mental illness means learning how to treat you. You have probably heard of self-care recently, but no one really says what it is. And that’s often because it varies person to person. So think, what makes you calm, what do you need when everything is getting on top of you? Think about this, and try and stick to this self-care plan, paying particular attention to it when life throws a curveball at you.

 

There is just one of these blog posts left in this series, but I have another one I’ve been working on to post before I finish the last of my bipolar posts.

 

Let me know in the comments if you think I’ve missed something from my treatment ideas, or if you have another PoV on the topic. Always love to hear from you!

Bipolar & Me: Part 2. Symptoms

So onto the main bit of these posts: bipolar, what it is and almost as important, what it isn’t.

Let’s start with some definitions, cause who doesn’t love those:

“Bipolar disorder, formerly known as manic depression, is a condition that affects your moods, which can swing from one extreme to another. If you have bipolar disorder, you will have periods or episodes of:

• Depression – where you feel very low and lethargic.
• Mania – where you feel very high and overactive (less severe mania is known as hypomania).”

This is taken directly from the NHS page so you’d expect it to be pretty accurate.

And yes, you do have to display episodes of depression and mania to a psychiatrist in order to be formally diagnosed (which is part of the reason diagnosis takes so long; you very rarely go to your appointments when you’re manic because hell, you’re not sick, you’re better than fine, you’re amazing, the most healthy person! Only sick people go to psychiatrists etc etc). So often your psych will only see the depressed or possibly mixed states (I’ll explain that last part later). Which means you just get antidepressants and gosh, just giving antidepressants to bipolar people gets an interesting reaction, as it often send them straight to manic. Not good but it’s often the fastest way to be diagnosed, aside from having an extreme episode of mania where you end up in hospital. For full disclosure, I went the former route. My psych saw me in depression, then in mania, then a long period of mixed state.

I’m using these terms, depression, mania, mixed…but what do they mean, really? Read on, dear readers, read on.
Depression

Biggest misconception about depression: it is just sadness. How many times have you heard (as a depressed person) things like: “everyone gets sad, deal with it, cheer up, focus on the good things, it could be worse, what do you have to be so sad about?” etc. I won’t even go into how much I hate the phrase “man up”, as that’s a whole different blog post waiting to happen.

 

The “Black Dog”, as coined by Winston Churchill (and taken by Ruby Wax to create the Black Dog Tribe online) is very different to sadness. Much has been said recently about depression and there’s a lot of writing out there that is superior to my own. It is not just sadness, it is so many things and yet nothing at all. When my depression is at its worst, there is nothing, there is an empty void where thoughts should be. That void seems to suck my energy, my interests in everything, my love for my loved ones. I feel nothing, I am nothing. This is actually when I have done the most harm to myself. Sometimes just trying to feel something, sometimes just because if I am nothing then why not hurt myself, damage things around me? Nothing matters. When that emptiness starts to ebb, that’s when sadness, anger, hatred, paranoia, all those fun things happen. It hurts. It’s like something has cracked deep inside and you can’t fix it and you can barely move because everything hurts and you know you deserve this because you are an awful person. Then there’s the searing guilt that you shouldn’t be feeling this way, so many people have it worse than you, what do you even have to be depressed about, which you take as proof of how weak and awful you are. That’s when self-harm as punishment, as release of the pain you’re feeling can come in. I also feel intensely hopeless about everything, and I can’t rid my head of suicidal ideations/plans. You feel so damn tired, but it’s hard to sleep when you need to and even harder to get up when you need to, like there’s a weight pressing down making it so much harder just to move, get out of bed, wash, eat, work, anything. Again, this is my experience, I know some people overeat in their depression which is a way of seeking comfort (as many comfort foods, like chocolate for example, release hormones like oxytocin, making you feel a little better, for a short while. Until you feel bad that you used food as a crutch again, and that feeds the depression, and you feed yourself, and it’s a near endless awful cycle. I’ll talk about coping mechanisms more in part 3). I was like that when I was younger; I swung the other way in my teens when I struggled to eat anything due to feeling so low.

 

So you know, not a barrel of laughs. You lose interest in most things, you (try to) isolate yourself; you have little-to-no concentration so finding comfort in books, even TV and video games is difficult. This is just a short look into depression, and no two depressed people will experience it alike. So this won’t apply or ring true to everyone, but it’s how it has been for me.

On to the flip side!

 

Mania (and hypomania)

 

Hypomania is the “light” or lesser version of mania. This doesn’t mean that it’s easy to deal with by any means but people don’t get to the extreme end of symptoms when experience hypomania, and often, it doesn’t last as long as full manic episodes. Hypomania can be the only type of mania a bipolar patient gets (for example if they have Bipolar II, or if they have rapid cycling bipolar) or it could be the stage before a person reaches mania, so sometimes with the right intervention, full mania can be avoided.

 

Symptoms of hypomania are similar to those of mania. These include (but are not limited to):

• Excess energy.
• Little need for sleep.
• Unusual exhilaration.
• Excessive irritability, excitement or aggression.
• Increased confidence/self-esteem.
• Very fast speech and thoughts that others find hard (sometimes impossible to follow).
• Unable to concentrate on one thing, easily distracted by their latest idea (an example: I once had made several drinks, in different parts of my flat, had half done dish washing, university work “done”, new art projects started, and new guitar tab music up on my laptop to do. All at the same time).
• Abnormal hypersexuality.
• Increased outlandish and uncharacterised risk taking.

For it to count as a hypomanic episode, there must be a sustained period of these symptoms during the entire episode. The emotions experienced are often unconnected to anything going on in the person’s life, though a person can be tipped into an episode by life events/stressors.

The main difference between mania and hypomania is the person does not experience psychosis or related symptoms, such as hallucinations, delusions, severe paranoia etc.

Mania, as I mentioned is similar. You again experience the excessive energy, along with things like extravagant and impulsive behaviour, excess/uncontrolled/impulsive spending, hallucinations (auditory/visual). To class as mania it must last at least a week and have a sustained abnormally elevated/expansive/irritable mood. It normally causes problems in the person’s social and work life, and can often (especially if they are not taking their medication) will lead to hospitalisation.

I guess what I would like to emphasise about mania is the common misconception that these periods are “fun”. I have myself sometimes felt so desperately low that I have stopped taking my medication in the hopes of eliciting a high episode, because surely it has to be better than depression right? Not necessarily (shockingly, depressed Kathy is not great at thinking rationally about this).

For me personally, mania is terrifying. I get paranoid, I have hallucinations. I don’t enjoy the excess creativity that is often spoken about bipolar sufferers. Admittedly, sometimes I *think* I’m a creative genius who can be working on three different creative projects at once and they are all breathtaking but that is rare and, in my case, definitely not true. I used to think mania was fun, at the beginning, but the effects are what truly get to me, and are why I hate it so much. My ex would tell me that it scared her when I was like it, I’m quick to anger frequently because everyone else is moving too slow, can’t know what I’m thinking, doesn’t understand my ideas and “brilliance” (usually because it’s unintelligible garbage). I’ve come close to cheating, because my energy just fuels all the awful impulses and urges in my head. I’m lucky in that so far, I’ve managed to catch myself before anything happens, but from reading other experiences I know that it does sadly happen (especially when you are untreated).

Finally:

Mixed State

It sort of is what it sounds like, state that is a mix of manic and depressive symptoms. So you could have the energy and racing thoughts, but the depressive thoughts, suicidal ideation etc. It is an intensely uncomfortable state to be in, to be excitable and energetic yet at the same time, apathetic and closed off and alone. I spend more time than I’d like to admit in this state I think, especially since my current medication mostly staves off the full-blown manic episodes (though life sometimes happens and pushes me there, but it’s a work in progress to try and reduce this). I also get incredibly anxious in this state, heart racing, indecisive, racing thoughts, but all about the negative potential possibilities. Makes it incredibly difficult to concentrate or sleep. The latter is important to try and get as many people with bipolar are hugely sensitive to sleep change (an almost sure fire way for me to go high is lack of sleep for a night or two).

There’s more I wanted to go into but this post is already longer than I’d planned. I hope this has provided a more rounded idea of what people with bipolar go through, it’s not like what I’d seen in the movies anyway.

As I will keep repeating, this is just my experience of the illness. If you disagree or experience episodes differently, I am not trying to dismiss you! We all experience the illness differently; feel free to comment on if you agree/disagree/think I’ve missed out something in the comments 🙂

Bipolar & Me: Part 1. Introduction

OK so this is not easy for me to do,  but I’ve been wanting to do it for a while. So I’m going to write a series of posts about mental health. My mental health. Specifically what mental health struggles I have.

First things first: surprise, surprise, I have bipolar disorder (or “manic depression”).

You may have seen Stephen Fry’s latest documentary on BBC “The Not-So Secret Life of the Manic Depressive: 10 Years On”. I watched the first documentary 10 years ago, before my own diagnosis. I’m trying to hunt it down to watch it again to see if my perspective has changed since receiving the diagnosis. From what I can recall, it seemed the follow up documentary was more of a depressing watch, there didn’t seem to be much hope portrayed for any of the bipolar sufferers depicted, including Stephen Fry himself. While I have only been officially diagnosed myself since ~March last year, I thought I would try and offer my own personal perspective on the diagnosis process, the medication, and the resources I’ve found available to me through a series of posts.

I have to admit, I struggled watching the most recent documentary. I found that a lot of what was said resonated with me and I understand that it needed to show the truth of living with this disorder. However, I think it really could have benefitted from showing just one person coping, one person managing their condition to balance out the rest of the quite depressing situations. I am by no means in control of my illness as it stands, and I’m still trying to work out how to manage it with my CFS/ME. It is exhausting. But I have found a medication that works for me, which is phenomenally beneficial (I will go into this in a later post). I’m able to stay more balanced and when I do have episodes, my lows are less low, my highs less high. I am considerably safer than I used to be. I am also fortunate in that it doesn’t make me numb, it doesn’t make me a zombie. I am still working full-time in a fast, stressful industry that I love. I have blogged before how I am so lucky because my employer is so patient and flexible in how they let me work.

I wish others with ME, others with bipolar could be able to do this. Many with these conditions have to work part-time, if they can work at all. I reiterate: I am incredibly lucky, and it is something I’m going to have to keep fighting for every day of my life to keep doing. But I am doing it. And I think that someone newly diagnosed with this illness would benefit from knowing that it can be possible. Hence these posts on “Bipolar and me”.

See Part 2 for my thoughts on the illness itself, dispelling some common misconceptions and just trying to fill you in on what living with bipolar really means.