Category Archives: cyclothymia 101

Travelling whilst Cyclothymic

I had a disappearing comment on the blog today asking for advice or thoughts on long-term travelling/backpacking whilst cyclothymic™. I think it’s something I can offer some comments on, as I do have some experience.

I try and travel regularly: living in Europe (although I don’t get to be a proper European for much longer *weep*) gives me a huge number of cheap options for getting out there and seeing the world.  My two most recent trips were one trip for 12 days backpacking through 4 cities and 2 countries, and a 3 day trip to one city. 10 years ago, before I was diagnosed, I did a massive backpacking trip around the world for a little over 6 months. It’s this experience I’m mostly drawing on here.

In my 6 months of backpacking, there were exquisite moments, but there were also truly awful times.

I vividly remember sitting on a bed in some anonymous budget hotel in Montevideo. It was early afternoon and I’d been sleeping for about 14 hours. I was looking at the window and, for the first time, I had just the most visceral understanding of why they put locks on hotel windows/don’t let you open them. I sat and I wept. Then the phone rang, I stared at it for ages, trying to imagine who could be phoning me. I eventually decided to answer, in my halting Spanish. It was a friend I’d met a few days earlier and who I was travelling through the country with. She wanted to know if I’d like to go to McDonalds. I agreed, and met her in the hotel lobby 15 minutes later.

McDonalds didn’t cure me, of course, I was depressed for a lot longer than one lonely hour sitting on a bed. But it was a reprieve from myself, and that was all I needed to get through the rest of that day.

I hate Uruguay now – and it has nothing to do with the country or the people – only my truly terrible emotional state while I was there.

That isn’t really advice.  But it is an introduction to the possibilities of travelling.  You’re away from your support networks, you might be disconnected from online support too – although that’s less common now, but when I was travelling 10 years ago Wi-Fi was not really A Thing, and I didn’t take a mobile phone with me. You’re also less accountable – how long could you fall of the face of the planet for before someone noticed, compared to when you are at home?

Here are a few things to consider if you are considering travelling and have cyclothymia:

  1. Travelling is tiring and will disrupt your sleep patterns. For any flight more than 6 hours long, you need to schedule a day off immediately following landing/arriving to dedicate to sleep/sitting around/having a very low energy day.
  2. For long term travel you need to build routines into your stops. Can you get a part time job at a place which you plan to stay at for longer? Do you want to enrol on a language course for an hour or two each morning for a month? Is there a place you can go everywhere to give you a sense of familiarity (personally, and slightly shamefully, I’ve been to either Starbucks or McDonalds in every country I’ve been to – and I’ve been to a lot of countries). When I’m starting to get hypomanic, or depressed, that carbon-copy familiarity can help ground me a bit.
  3. What are your strategies for dealing with dangerously low mood (think me, on a bed, looking longingly at a window, in a shit hotel in Uruguay)? Will you be travelling with a friend or partner; do you have an international calling bundle on your mobile; is there someone who will accept a collect call at any time of day (time zones!) and can talk you down? Have you got travel insurance with an affordable excess, on which you fully disclosed your bipolar/cyclothymia? You’ll need that to access a consultation with a GP/short term medication/review of existing medication if you are already taking it. Similarly, if you are taking psychiatric medication, you’ll probably have to get repeat scripts whilst you travel – so you may need a psychiatrist’s letter, and to confirm your particular medication is available in the countries you are travelling to.
  4. Sleep! Sleep is so important to maintaining my mental health and sleeping in hostel dorms is pretty much the opposite of achieving good, quality sleep [case in point; my experience in Singapore is number 4 on this Buzzfeed list of strange-shit-that-happens-in-hostels]. It can be a good idea to both budget for and schedule time in private rooms or hotels. 2-3 nights uninterrupted sleep, especially if you have an en-suite and a TV so you can just hole up for a few days and reset, is about the best thing you can do to take care of yourself. I did this a few times whilst travelling and it was money well spent every single time. My more recent short-term travel is something I still plan around having one to two days recovery time when I get home.
  5. What are the hardest things for you about being either hypomanic or depressed? For me, it’s the nervous/anxious habits and fixations. I cannot cope with ‘dirt’ – real or imagined. Hygiene standards whilst backpacking can be pretty variable. Your fellow backpackers may have some fairly singular ideas about what constitutes appropriate bathroom etiquette, and don’t even get me started on kitchens. What strategies are you going to have to deal with that? If you don’t have funds to decamp to a mid to high range hotel at the first sign of trouble, you’re going to need to be more creative. I carried a thin blanket, and a few items of cutlery which I resorted to when I stopped trusting the cleanliness of bedding and self-catering facilities (I’m in a low mood period right now, and just thinking about using unfamiliar cutlery is making that dragon of anxiety rear up in my chest). I also, on my long trip, travelled with my-then-partner and she did sometimes take up the job of scoping out the cleanest bathroom or pre-washing cooking material. It helped that she tended toward obsessive cleaning in this respect and appreciated terror at ‘dirty’ things.
  6. Travel can be lonely. Don’t think for a minute that taking a laptop or tablet and staying up to date on social media is going to be a substitute for hanging out all evening with your oldest friend and putting the world to rights. There can also be a real pressure to be seen to be having a good time whilst travelling. I found it really hard to update friends (with whom I would normally discuss my mood) that I was experiencing depression whilst I was travelling. Because who could be unhappy whilst on a picture-perfect Brazilian beach, right? A good old fashioned paper journal where you honestly record how you’re feeling can help ‘get it out’ (I still have mine – it records the highs and the lows from my trip and I’m glad I have the honest account of it, as well as the edited snapshots of me smiling on beaches and in rainforests) You might also try and schedule regular Skype dates with close friends where you give yourself enough time, and privacy, to actually talk properly about your feelings. Finally, you might want to travel with a friend, or arrange to travel with other backpackers you meet for short (or long!) periods.

I can’t stress enough that making the decision to travel is not all about planning against the worst. From a cyclothymia point of view, I think there are a lot of positives to long-term travel.

Travel is good.  Personally, when cyclothymia gets oppressive or I start cycling too fast, a change of immediate surroundings helps ease that sense of crushing weight or inescapable thoughts. Travelling – especially backpacking – is about doing just that; being able to pick up and run.

I also find it really hard to be mad around people – when I’m feeling particularly mentalist and maybe having ‘strange’ reactions where I talk too much, or get distressed by certain noises, smells, or just get caught talking to myself – I’m mortified to have to see the people who witnessed it, again. The advantage of travelling is that when you’ve made a ‘bad’ [read: they’ve all clocked me as a mentalist] impression, you can just move on to your next stop and never see those people again. Problem solved!

Someone said to me, before I travelled, that your worst day travelling is still better than your best day at home.  I don’t know if I’d make quite such an extreme claim, but I do think it’s easier to keep your mood moving on when you are in the midst of a lot more activities, a lot more options, and a lot less rigid routines. Yes, you need to make choices and maybe put in place a few more protections/insurances than your ‘standard’ backpacker, but if you’re doing that in your daily life anyway, it’s not a particularly onerous task and has much bigger rewards.

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The Great Big Cyclothymia Q&A

This Q&A is almost entirely composed of search terms which have brought people to my blog.  I’m no expert, but over the years I like to think I’ve collected some instructive experiences and learnt, often from my mistakes, a few things which may, if not help others, then at least provide them with a perspective to consider as they continue researching these things.

How do you deal with a colleague who has cyclothymia?

I recommend dealing with a colleague who has cyclothymia in exactly the same way you deal with a colleague with curly hair.

If you would like to help a colleague who has cyclothymia then your first stop should be having a conversation with them about what they might need in the work place – it could be a friendly face, a regular coffee break or lunch-date with a colleague, it could be additional meetings with line managers to help flag up feelings of being overwhelmed or excessively stressed before they turn into massive problems.

If you have cyclothymia and you’re thinking about how to deal with this at work I recommend looking at the Mind website. They have extensive advice on being mentally healthy at work and the possible risks and benefits of ‘coming out’ at work about your mental health issues.  I personally have never disclosed a mental health problem to an employer, with mixed results.  The most negative experience was when I was a manager and my staff told me “you’re funny because you’re great to be around sometimes because you’re so enthusiastic and positive but sometimes you’re incredibly grumpy and it’s no fun working here then” which came as something of a surprise as I thought I was hiding my mood swings well.  If you’re considering disclosing your mental health status to an employer or colleagues remember that they probably already know something about you is cognitively….off.

Can you hold a job with cyclothymia?

This really isn’t a question with a definitive answer.  It depends on you, how well you are able to manage your moods, how you respond to stress, how much stress your job entails….Personally. I’ve found jobs which have a degree of flexibility – for example office work which has varied tasks to be completed in a month ranging from mindless data entry to complex accountancy work – to be one of the better positions I’ve held as I was able to set my own schedule for the day or week, and work around my capacity for concentration and originality at any given time.  Conversely, working in customer service, whilst tremendously easy when hypomanic, was excruciating and often-times disastrous when I was depressed.

Holding a job with cyclothymia, like any other mental health issue, is a question of how well you manage your symptoms, what degree of flexibility you need and can have, and how much you disclose to an employer and their response.

Is cyclothymia an excuse/reason for being rude?

It’s not an excuse, but it can often be a reason.

Both highs and lows bring their challenges for social interaction.  I talk over people when hypomanic and am curt with people when I am depressed.  I work hard to remind myself to think first and act and speak second.  But impulse control, as you likely know if you are reading this, can be a huge challenge when at the extremes of mood.

I always maintain that no matter what my mood, I am accountable for my actions – I apologise to friends and family I think I may have offended or upset as soon as I am able, and I try and let close friends know where my mood is so they can be prepared for some irrationality.  How well your friends tolerate your moods is down to a lot of factors – their patience and understanding, your willingness to be accountable for your actions, and sometimes, just dumb luck.

Should I tell my friends I have cyclothymia?

My close friends know, acquaintances and colleagues don’t.  As I say in the above point, having your friends understand why you may act erratically or very differently from one week to the next can help you maintain better relationships. Friends can also offer support and understanding when you really need it.

In the end, it’s up to you – what do you want to get out telling your friends? Do you want to help them understand you better? Do you want to ask them for support in some areas of your life? Do you want them to know that you understand their struggles with mental health because you have your own? All good reasons to share. If you want to tell your friends in order to get a carte blanche to treat them differently or to demand they alter their behaviour around you then you may want to think more deeply about how you relate to these people and what is reasonable, or unreasonable, to ask of people.

Does cyclothymia affect concentration?

Poor concentration is a symptom of depression.  Inability to focus on a task or subject for an extended amount of time is a symptom of mania and hypomania. So in summary? Yes.

Anecdotally, my concentration levels are one of the key ways I monitor my moods.  The moment my concentration drops significantly, I know I’m heading up or down.  We’re talking about something more significant than a tendency to procrastination, or that fidgety Friday feeling we all get; we’re talking staring at a page and reading the same sentence 6 times but taking nothing in. We’re talking abandoning one task to begin another because a better idea just occurred to you.  Lack of concentration, when it’s symptomatic of cyclothymia, describes just not being able to discipline or motivate yourself into acting in any other way than you are; it can mean doing a job is like wading through treacle so hard it is to make your mind process anything, or feeling like a butterfly on speed, flitting from one idea or job to the next without a pause in between, but completing nothing.

What are the habits or behaviours typical to cyclothymia?

I’ve written in various entries about some of the common experiences of cyclothymia, from hypomania, to anxious compulsions, to the suddenness of the onset of mood swings which is characteristic of cyclothymia.  I tag entries dealing with my experiences of specific symptoms of cyclothymia with ‘symptoms and habits’

To a degree, manifestations of cyclothymia are as unique as the sufferers, in other ways, there are a distinct list of symptoms which we all experience to a greater or lesser degree – some of which are also common to other mental health disorders.

Is my psychiatrist right about cyclothymia?

Short answer; yes.  Long answer; no.

Psychiatrists have a habit of telling people with cyclothymia that without treatment it will develop into bipolar II but this seems to be anecdotal and difficult to disentangle from people being re-diagnosed with Bipolar II after not responding to treatment for cyclothymia.  Psychiatrists, in my experience, also have a habit of insisting your life will be dramatically altered because of cyclothymia, and that you cannot successfully manage it alone – this may not be true, or it may.  There are so may variables in anybody’s life which make such pronouncements utterly meaningless.

Seek advice and information on cyclothymia from your GP, psychiatrist, from Mental Health charities or advisers, and speak to other sufferers.  Do not allow yourself to be pressured into decisions or treatments you feel uncomfortable with and feel empowered to ask for second opinions.  Psychiatrists do not have all the answers, they are not sooth sayers, they do not have a crystal ball.

I wrote a little on my experiences of following, and not following, a psychiatrists advice in my post ‘things I want you to know if you have cyclothymia

Can you manage cyclothymia without medication?

Perhaps.  I can.  Or rather I am trying.  Its a continual process and it depends heavily on your lifestyle, your job, your experiences of medication and your ability to maintain healthy routines.

I have written here, and here, about my attempts to manage cyclothymia without medication.  After a few years, it’s still currently the right choice for me; it may not always be the right choice for me and it may never be the right choice for you, but it is possible.

What medication can be used to manage cyclothymia?

I have taken a slew of anti-depressants and the last medications I was on were Seroquel and Mirtazipine which worked to an extent but ultimately I decided the benefits were outweighed by the side effects.

Wikipedia has a very brief list of the medications commonly used to treat cyclothymia as does the NHS choices website (scroll down for ‘How is it treated?’) For detailed information on a drug you have been prescribed I recommend asking your doctor or psychiatrist, and having a look on the Crazy Meds site which I have always found to be both frank and accurate.

How do you live with cyclothymia?

This is the question my entire blog is aimed at exploring.  There isn’t, I am confident, a single answer.  I’m finding careful use of some medications (anti anxiety and sleeping tablets), occasional short courses of talking therapy, healthy physical routines and habits, and being tolerant of my own fluctuating reserves of energy and resolve, all contribute to me feeling in control of my life with cyclothymia.

It’s not an easy road, but it is one that it is possible to walk, with time, and effort put into finding what does and doesn’t work for you – either alone or in conjunction with mental health professionals, and supportive friends and family.

And finally, a google search term I couldn’t turn into a question;

Cyclothymia and stupid people

Unfortunately, cyclothymia does not bestow you with the super power to avoid stupid people, or eradicate them from your life. Sorry.

Have you still got a question that needs answering? Do you want to add to or query any of these answers? Please drop me a line in the comments.

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Cured

I regularly experience something I believe is common to all mental illness. When I’m stable for longer than a week or two, I become convinced I’m cured.  Or, even more often, that there was nothing wrong to begin with.

Just last week I was thinking about how I should probably wrap this blog up, since I’d been stable for the best part of 6 weeks and clearly never had cyclothymia to begin with.  In fact, I said to myself, I probably did more harm than good talking about my supposed experiences of an illness I never had.

Until today.

The brain gremlins are back. I nipped into town this morning to pick a couple of things up and, I planned, to go to a coffee shop and finish a book I’d been reading. On the way into town I crossed the road against the lights (i.e. at a pedestrian crossing, I crossed on the red man) and I had to start running halfway across because a bus I hadn’t spotted was coming my way, fast. A woman waiting to cross on the side of the road I was heading for screamed at me; “IDIOT!”  I strode away, my big sunglasses hiding the fact I immediately started tearing up. I collapsed in on myself.  Everything came crashing down.

I got through the rest of my brief shopping trip by not meeting the eye of anyone, thanking cashiers profusely without looking up from my wallet, keeping sunglasses on to cover my just-about-to-cry eyes.

I got home, closed the curtains on the day, crawled into a ball on the sofa and watched Breakfast at Tiffany’s, my go-to Mean Reds movie (for obvious reasons).  I sat there, numbed, watching and watching.  My hands didn’t stop shaking for 3 hours.

After a few of hours at home I decided I needed a bottle of wine to make it through the evening and nipped out to the shop round the corner.  On the way home a woman was walking towards me with a little dog in her arms.  I smiled at the dog, as I always do when I see animals heading my way, and she saw me looking.  As we drew level her face broke into a smile and she said a cheerful “hi!” to me.  I couldn’t lift my eyes to her face, I rearranged my face as fast as I could to form the word ‘hi’.  But my face didn’t get there fast enough and the word died in my throat.

I got home.  Back to a shaking mess by the time I got in the door.  Started descending into a panic attack. Why? Because a beautiful woman with a dog had said hey to me, and I didn’t reply, so she must think I’m nuts, she must think I’m a weirdo, and actually, wasn’t she one of my neighbours? Oh god if she was one of my neighbours she probably already suspected I’m crazy, and now she’ll be sure, and she’ll talk to her flatmates about that weird girl upstairs, and oh god why didn’t I say hi? Why didn’t I meet her gaze with a friendly smile?

No, not cured.  The brain gremlins were just sleeping.

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Things I want you to know if you have cyclothymia

When I was first diagnosed with cyclothymia in 2009, I followed the advice of the psychiatrist – along with heeding his dire warnings of the inevitability of developing ‘full blown’ bipolar – and dutifully began a lengthy course of anti-psychotics (Seroquel) and anti-depressants (Mirtazipine).

They hit my body hard – I put on about 2 stone and tottered on the edge of being clinically overweight.  I slept 12 hours a day and when I missed a dose I felt like I had bugs crawling around in my skull.  After about a year battling through such fog, fatigue and feelings of ‘fugliness’ I decided to come off the meds and give self management a crack.  I approached my GP for assistance with this. but he refused to assist as I – foolishly – admitted I still had all the same mood symptoms which had prompted the psychiatrist to prescribe them.

So I did it alone, cold turkey.

I sometimes wonder, 2 years on, what damage I did to my brain chemistry in coming off meds like I did – I certainly wouldn’t recommend anyone else end their usage in that way and I think the ‘bounce back’ effect such a sudden removal of chemicals had on my brain, caused the 6 months or so following that decision to be extremely difficult.  It really underlines the need for better patient advocacy and support for mental health patients.  Nonetheless, here I am.

A combination of life events and going completely med-free for the first time in many, many years, caused a number of physical symptoms and illnesses to arise and I now suffer from a small number of physical problems relating to anxiety and stress which were diagnosed after rounds of physical investigation and tests.  Management of aforementioned physical ills can be done through drugs or through lifestyle changes and self management.  After experimenting with medication, as I did with psychiatric drugs, I found a more holistic route to managing my physical ailments.

What would I tell someone else looking for advice on how to live with cyclothymia based on my several years accumulated knowledge?  A few things;

  • As ever, remember – tell yourself, your family, your friends, your doctor – this is not a mild condition, it is a milder form of a very serious condition.  It destroys lives and rips apart relationships. Do not let anyone, or yourself, underestimate it.  But don’t fear it.
  • Cyclothymia kills – when you wake up depressed you lose all sense of perspective, you believe you’ve felt this way for days, weeks, months, not hours.  You can only remember any other state as being terrifying, free wheeling mania and, because you are depressed, all you feel is anxiety and guilt over the times you were manic.  People with cyclothymia – as with other psychiatric, depressive conditions – make stupid, short-sighted, snap deicisions.  And some of those decisions you don’t – can’t – come back from.  Never let being told you have a ‘mild’ condition stop you from picking up a phone/walking into A&E/screaming for help.  Do not become a victim of cyclothymia.
  • You probably won’t get better from cyclothymia or ‘get over it’.  But you will, very likely, find a way to manage it.  Sometimes the highs and the lows will be worse than others, sometimes they will be better.  Cyclothymia is a living thing – it waxes and wanes, grows and shrinks.  If you can work – alone, with friends, in therapy, with a CBT workbook,anything, to find a way to identify what exacerbates or contributes to periods of acute depression or unending mania then do it – in the long run it will help you tremendously.
  • You will not definitely get ‘full blown’ bipolar.  Psychiatrists do not have crystal balls, they have not met every person with cyclothymia and followed them for the whole of their lives, they cannot know how your mental health will unfold over the next 10, 20, 50 years.  Do not let them bully you into decisions because they are telling you to be afraid.   Ask for an advocate – such as from the charity Mind – to be present at your meetings.  If you have sympathetic family and friends, ask them what they think about you taking meds; my friends helped me decide it was the right choice for me when the psychiatrist told me I needed to take anti-psychotics and anti-depressants, my friends also confirmed what I suspected when I felt I was ready and able to live med free.
  • Don’t believe that living ‘med free’ means living ‘medical help free’.  Sometimes I get to a point where I haven’t slept for a week, or I haven’t sat down for 48 hours, or I can’t stop cleaning the kitchen because the little anxious ticks have blindsided me and I’m useless.  When that happens I seek out the help I need – sometimes that is sleeping tablets or anti-anxiety medication (although I recognise I abuse meds and alcohol, so I choose the least addictive, least easy to abuse option) and sometimes it is a talking therapy session.  I am lucky in that I am currently enrolled at a university so I can use their counselling services for free and at short notice.  If you have a good GP and/or CPN you should be able to quickly access short term talking or counselling therapy on the NHS.  If you have money, you can always go private.
  • You haven’t failed: sometimes I go months without acute mood swings – I recognise they are there and I feel the ebb and flow of the ups and downs but they don’t inhibit my movement or life – sometimes I get the very worst of the ups and the downs for a few months in succession.  Whilst I am not able to recognise it in the midst of the black – and most likely you won’t be able to either – I try and reflect back on those times afterwards, see if I can identify what contributed to such a bad period, or what I might be able to do differently, but I also do something nice for myself – buy a new cd, have a long bath, take a day to myself watching my favourite movies – you don’t fail when cyclothymia symptoms become pronounced, you succeed when they fuck off again.
  • You are in control; ultimately, how you handle the ups and downs, how you respond to other people/how you treat them (it might be an explanation, but it’s not an excuse for being rude/evasive), and how angry you feel about cyclothymia ‘picking’ you, is up to you.  Let it consume you and it will.  Focus on it and you will see nothing else in your life.  Kick it in the arse whenever you can, forge strong and meaningful relationships and friendships with as much or as little explanation as you want, make plans to help yourself – I give myself permission to nap after work when I am particularly low, I set a ‘2 day’ limit on time off work without a doctor’s note for when I am so anxious or unhappy I can’t face myself in the mirror.  Yes it is hard, and yes sometimes it does feel like a unending battle, but it is all I know and sometimes, albeit only sometimes, I’m pretty sure I’m a step and a half ahead of where I was in 2009.

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