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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

 

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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!

IMG_2590

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 🙂

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.

Finally, another book review! I decided to have a change and write about a comic/graphic novel, since I have been reading a LOT of these recently.

Nimona-350x524

Before I get into the main review, I should say that I’m a huge comic fan. Web comics, paper comics, Image, Marvel (a tiny amount of DC). I’ve become almost as addicted to them as normal books. Which is impressive, as I haven’t been into them for nearly as long. I have noticed that there are few women involved in the comic world so when I found something that sounded right up my street in terms of genre and humour, the fact that it was written and illustrated by a woman gave it an extra boost for me.

Apologies. I’m getting ahead of myself.

Nimona is a standalone (for now) book based on the web comic Noelle Stevenson made of the same name. It’s rare I find many standalone comics that really grab me as they usually need to be a series to build up the character background to pull me in. This isn’t the case with this book, and the characters have stayed with me long after finishing.

To sum up the story quickly, without giving the plot away: Nimona is about a young woman of that name who declares herself side-kick to an evil villain Lord Ballister Blackheart. She wasn’t exactly what he had in mind for a side-kick but considering she can shapeshift, he decides to give her a chance. I mean…who wouldn’t? Their mission: to cause havoc and show the secrets of Sir Ambrosius Goldenloin and the Institution he works for.

Nimona is completely (perhaps overly?) enthused about his vendetta, and is always trying to push his schemes further than he actually ever planned. Both characters have interesting pasts that have led them to where they are, and neither of them expects what they find out about the other.

The story is compelling, funny, gripping and incredibly silly but has the ability to pull hard at your heartstrings when you least expect it. I’m reluctant to say too much more about the plot itself as a lot of the magic of the story is in the surprises. But the things I particularly enjoyed are:

  • Nimona herself. She’s loveable, unpredictable, unnerving, all at the same time.
  • The combination of magic and sci-fi makes for an interesting story as it can combine devices and tropes from both genres, whilst adding some new ideas to them too.
  • The morality of the characters. It’s fairly common now to have characters that are various shades of grey (forgive the phrase, I’m in no way endorsing that book) and this is something that Noelle manages here. The question of who is evil, what is evil, who is good and how do you tell the difference is explored in the characters of the story.
  • The art of the comic. The art style is typical of Noelle if you are familiar with the Lumberjanes (which if you aren’t familiar with, go! Seek it out! You won’t be disappointed). It’s almost sketch-like in style, but it is clear and distinctive.

I have to include part of the blurb on the back of the book, as I don’t think I can describe it any better (which is terrible for a writer to admit):

“Nemeses!
Dragons!
Science!
Symbolism!”

Hopefully, I’ve given you enough detail to convince you to read this fabulous graphic novel, you absolutely won’t regret it. If you read it and are desperate for more, as mentioned above, read her Lumberjanes series, and I can also recommend a series by Kurtis J. Wiebe called Rat Queens. I am attempting to work on a similar review for that but as you might have noticed, I’m somewhat erratic with my posts, so go read it now if you like humour, battles, women being kick-ass, and mercenaries.

Next post is going to be another ‘serious’ one, so I hope this has made a nice change of pace.

Write soon 🙂

Working 9-5?

spoon

I found transitioning from university to working life quite difficult. I couldn’t take regular naps in the day between lectures, I lost the support network the university provided for me to help me get to and from places.
Now this is just my experience and I can’t speak for everyone. But working with ME and bipolar disorder is difficult. There are many factors I need to take into account every day, keep my exertion to a certain level so I don’t trigger a flare up in my ME, make sure I keep track of my mood so that I avoid any potential stress triggers, if possible…the list goes on.
So I’m going to go through the top 3 most important things in working with chronic health conditions.
1. Place of work is crucial.
Now I have had three jobs since graduation. The first one, I was let go. I do not necessarily blame them; I was very ill and trying to cope by pushing myself to my limit and beyond, just to get by. I did not know how to do any better; I didn’t know what to ask for to get the help I needed. But on their part, they did not understand my illnesses or how they could affect my work.
My current job is wonderful. Yes I am still somewhat behind my colleagues here but they have researched and understood my background, what I’m attempting to deal with and there have been two significant deaths close to me which have thrown me. I hate to sound like I’m making excuses but my work understand that I haven’t had the chance to be at the same level as my colleagues because the playing field wasn’t even when I started.
What I am trying to say is that the workplace is important. The way you are managed, how they listen and try to understand your needs and work to them can make ALL the difference to your success at work.
(Of course this also relies on you being open with your place of work about your illness. Maybe this is number 1.5 on the list. Be open and honest or they can’t help you. Occupational health exist to keep you in work if possible, to change circumstances to allow everyone to be on the same playing field).
2. Find your limits
Now if anyone reading this hasn’t heard of the spoon theory, go and google it now, otherwise this will sound a bit odd.
I can tell in the mornings normally how many spoons I have for the day. At my old job and at the start of my current job, I would work as hard as possible which meant I had no spoons left to do much of anything else. I’d go straight to bed after work and sleep for much of the weekend. Sometimes that happens now but what I now do is if I know I have fewer spoons, I work with that. If I have limited spoons it makes more sense for me to work from home rather than expend spoons getting ready to leave the house, do the drive, be around the bright lights and the noises of the office (all things that wear me down). Working from home is something I am incredibly lucky to be able to do, and if you are a spoonie like me, see if there’s a chance to do it too. It has kept me safe from driving when I’m not fully ‘with it’ and it means I get more work done because I can use my limited energy on work, not the things mentioned above.
Finding you limits is the most difficult thing and with many chronic illnesses they can change day to day. But you have to try and find them as it will make a huge difference to your working and personal life.
3. Use your annual leave
This might sound obvious but if you’re anything like me you like to put your best effort in at work and that means dedication. And sometimes you can get so wrapped up in work that you forget about breaks. Or maybe you use your annual leave to go on holiday and you get exhausted doing that (yay holidays making you need a holiday just to recover). What I found most useful this year was using some of my annual leave to just rest. I slept and relaxed and I did minimal tasks, nothing stressful. I think I just about managed a small bike ride with a nap straight after. This meant I was recharged for going back to work instead of getting more and more drained as the weeks went on. I still have times when I have to sleep when I get in from work but it’s not pleasant to lose every evening that way, so if you can block off a couple days here and there to catch up on some much needed rest, I found it did me a world of good.
Note: if you have fully burnt yourself out and you are sick DON’T use your annual leave, take it as sick leave. These are very different things. I had to do it, there’s no shame in it. With a lot of invisible and (visible illnesses I’m sure), there’s sometimes nothing you can do to prevent a flare up. And trying to push through that *every time* only made me worse, and of course my work suffered too.
So that’s my thoughts about trying to work with chronic illnesses. It was more geared towards my ME experiences but I think it applies to mental illness too. I know my bipolar has had a severe impact in my work experience and I am very grateful that I have such an understanding employer to deal with how erratic I was.
If you take only one thing away from this: be honest with your employer. They might not all be great about it but I believe most just want to get the best out of their employees and that can’t happen if you’re struggling by, trying to hide your condition. Be honest, find your limit, and use your breaks.

Can you think of anything else I’ve missed? What have you found is useful at work when living with or without a chronic illness? I’m always eager to hear your thoughts.

TW: suicide

Sorry I’ve been quiet again, things have been busy at work and my health has been topsy-turvy, to say the least. (This is only going to be a short post.)
Additionally…I suffered the loss of a close friend. I lost her to depression and suicide. I’ve cried, I’ve been angry. This is the second friend I’ve lost to it, with two tohers (that I know about) who tried and came close). But I’m trying to take things from her life, instead of focusing on her death. But it is difficult and it is something I have to make a conscious choice to do every day.

She was a roller derby player; she was relentlessly trying to improve at it too. She will inspire me to keep pushing, to know I can always get up when I fall down (and it’s roller derby, there’s a lot of falling). She was a crafty person, she enjoyed making her own jewellery and doing crochet. I have a hundred projects I’m either yet to start or yet to finish. I’ll think of her and it’ll remind me to use my creativity, make something beautiful. She found it difficult being around people sometimes, found it hard to make friends. I know what this is like. But she started roller derby to meet people, to make friends. She will be my reminder to step out of my comfort zone. She was blunt; you always knew exactly where you stood with her. Sometimes I need to remember to just say what I feel, to channel her backbone.

I could do a whole post on suicide, on mental illness. I will in the future I imagine, when it’s a little less raw. But let’s just say I have first-hand experience of an illness and can offer some insight on suicide, from a mentally ill person’s perspective.

Things have been difficult with this going on. But the people left behind after suicide have to keep pushing on, going forward. She couldn’t carry on into the future. So we keep the memory of our lost ones with us, so they can continue forward with us.

Next time I’ll be writing about working when chronically ill; it’ll be more cheerful than it sounds I promise!

Any ideas for future blog posts are welcomed, otherwise I’ll just keep making it up as I go along.

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