Category Archives: asking for help

You Wouldn’t Like Me When I’m Angry

I’ve spent some time thinking about what my next blog post should be.  There is a more general piece on trigger/content warnings on online safe spaces brewing in my head but today it’s a much more personal ‘state-of-me’ post.

This blog has always been about my journey through a life with cyclothymia and right now that journey has come to a cross roads.  How do I proceed? What do I need?

The biggest issue in my mental health life right now is anger.  Anger has its uses, it gets me out the house, it makes me stand up for myself, it motivates me, and it keeps me from caving in on myself when things get tough.  But it also means I lash out at people around me, alienate them and isolate myself.  Anger means I never rest, never feel relaxed, always ready and waiting for the next fight.

Anger has, I’m coming to see, become a crutch.  It’s no longer an emotion which helps me – perhaps it never was although at one time I was sure it was all that kept me alive – it’s an emotion which is just burning me up from the inside and leaving me no energy or love to put out into the world.

I’m angry about a lot of things; I’m angry I have cyclothymia, I’m angry my brain can cripple me emotionally and physically with no warning.  I’m angry about the person cyclothymia has made me – insular, untrusting, nervous, exhausted.  I’m angry about the way I’m living my life – both the choices I made that brought me here, and the factors I never had control over that caused life to end up this way.  I’m angry about the way some very important people in my life behaved, I’m angry about the way I have behaved towards others.  I’m angry I keep getting knocked on my arse by a resurgence of bad, depressive feelings. I’m angry I can’t control it.  I’m angry about the crap treatment offered (or refused) to me by the NHS and I’m angry we have had 30+ years of governments who don’t care about mental health enough to put any meaningful investment into it.

This list of things I am angry about could go on and on, and I’m angry about that.

So what I need, now, urgently, is to find a way to deal with this anger and if not erase it from my day to day life then at least channel it into some more useful outlet than the current mute and impotent fury I carry around in my chest each day.

I need to find a way to get up each morning, face the world, and do my work that doesn’t depend on, function through, anger.  I feel like I’m pedalling furiously and standing still because so much of my energy goes into feeling angry but so little of it turns into anything productive.

And too much of my anger gets turned in on myself – why aren’t I better? Why don’t I do better? Why aren’t I the kind of friend, colleague, ally I would want? Why am I unable to make myself different? Why can’t I just shut up and get on with life? And then that anger turns into self-punishment, drinking too much, sleeping too little, denying myself a social life, refusing to plan for a different future.

It’s time to change.  This is a line in the sand.  I’m going to explore ways to let go of anger and ways to generate positive energy to put into the world and to motivate me to live.

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Filed under asking for help, NHS and Professional Services, self-hood and cyclothymia

Honesty is the best policy

I started this blog with the intention to share my experiences of living with cyclothymia, and some of the things I’ve learnt to make life a bit easier.  I’ve had a great response to some of the posts I’ve put up so far which has been really gratifying, and I’m working on a cyclothymia FAQ based on search results that are bringing people here (and please feel free to submit your own questions – and answers if you want – in the comments and I’ll include those too).  The flip side, however, is that this aim has become self-silencing.

I don’t have all the answers – I struggle with cyclothymia from month to month but also, sometimes, from day to day.  If I can’t tie up an experience with a “and this is what I’ve learned” I’ve become disinclined to blog about it.  I’m also reluctant to admit that dealing with cyclothymia is not an up and up process.  There are as many steps backward as there are forward ones.  Things go wrong. I fuck up.

I’ve been through more than a month of near constant cycling; straight into a high after every low, no respite, no calm.  My highs have been anxious nightmares, my lows have been crushing, numbing, long.  I spent 12 days sleeping for no more than 6 broken hours a night.  I argued with friends and family and ran away to the other side of the country for 3 days.  I’m self harming occasionally.  I’m failing miserably at maintaining any kind of schedule, getting work done, or socialising.  My occasional honest tweets or conversations where I reveal how I’m feeling are causing friends to become concerned for my well-being which in turn causes me to fall into a guilt spiral of self recrimination and self loathing.

I’ve idly considered going to my GP and asking for a referral to a psychiatrist to discuss medication options but then I remember how many medications I’ve tried over the years, the total disregard for my wishes last time I tried to tackle cyclothymia with meds (“oh you have horrible side effects on a mind-blowingly high dose? Tough luck. And no, we can’t discuss other options. I’ve met you twice now so I’m discharging you back to your GP.  No, I still don’t care you’re not happy with this treatment”), and the massive amount of ambivalence out there in medical-knowledge-psychiatry world about whether treating cyclothymia with meds is ever a good plan.

So here it is; cyclothymia really bites.  It’s biting really hard right now.  It’s sunk it’s teeth in these last few weeks and I can’t shake loose.  And I’m not managing to always win, or even sustain my small gains in some places.  It’s not an easy road. And more than once this week I’ve wished for a new brain.

That’s how it is.

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Filed under asking for help, medication, NHS and Professional Services, self harm

Professional prejudice

About 2 years ago, whilst living in a different region of the UK, I asked my GP for a referral to psych services for talking therapy. The referral process went like clockwork and I saw a sympathetic and professional psychiatrist who, after doing a full assessment, and hearing my experience with CBT and reluctance to go through it again, recommended cognitive analytic therapy. I was placed on the waiting list.

A year passed and I got slowly closer to the top of the list. However, I also got closer to my planned move to the south east. The same week I moved south I received a letter expressing regret for how long I had been on the waiting list and offering an interim group therapy appointment. I called them, thanked them, and explained I had moved to a different region. They offered to write a referral letter to my new GP to pass on to the psychological services in my new area, which they wrote and dispatched within a couple of weeks.

So far, so simple.

My new GP praised the letter which explicitly asked I be placed on a waiting list for CAT and the length of my wait so far be taken into account. He passed it on to the psychological services in my new area.

Which is where it all fell apart. I was rejected for CAT in this area because cyclothymia is not a “serious condition”, which was the criteria for being given CAT here. I was not seen, spoken to or assessed in any way by any mental health professional. I was just rejected wholesale and referred to a separate part of the service which only offer, you guessed it, CBT.

I kicked up a fuss, complained to PALS, calling my GP, but they wouldn’t budge – I was not ill enough to qualify for CAT. I was, however, offered an assessment interview by the folks who do CBT. The director of this service, we’ll call him Bob, offered me an alternative: Dynamic Interpersonal Therapy. Based on what Bob described, DIT sounded Freudian as hell something which, as a queer woman, I try and avoid at all costs.  But it’s testament to my desperation for some support that I agreed to be placed on a waiting list for assessment. In the meantime Bob told me he,would send me some pamphlets on DIT.

The pamphlets arrived when I was up to my ears in university work so I put them to one side with the intention of reviewing them later. The assessment interview rolled round and then everything went to crap

After running through the usual questions, Bob baulked when I listed anti-psychotics as one of the medications I had taken for my condition. He expressed doubt we could continue with the assessment. “I never had psychosis,” I volunteered, desperately. He raised his eyebrows and said “ok, well, as long as you didn’t…” He asked me if I’d read the literature he posted to me, I confessed I hadn’t had the time. He leapt to the offensive “why should I believe you will be committed to this therapy if you don’t even read the leaflets?” I replied, again with a hint of desperation, “I just haven’t had time, I would be committed.” “But,” he said “what if it’s like CBT and you just say it doesn’t help you? You say you’ve had three rounds of that, perhaps you’re just not willing to make it work. How do I know you won’t give up on this like you’ve given up on that?”  I’m really desperate at this point, the only support I’m being offered, however inappropriate to my needs it might be, is on the verge of being taken away because despite having been on waiting lists for over 18 months, I apparently don’t ‘want it’ enough. I promise I’ll be committed to the therapy, and assure him that what he is offering will help me if only he’ll give me the chance.

I dated a woman a few years ago with severe asthma. She was hospitalised and lost her job because she was on sick for a year. The specialist doctors in hospital gave her immediate relief from her breathing difficulties with oxygen and steroids.  These doctors worked, over the next year, to find a daily drug inhalation that would keep her breathing normally. At no point did she have to prove she would use the new inhalers before they would give them to her. She wasn’t expected to provide an explanation for why the inhalers she was using before she went into hospital had failed to keep her lungs expanded. When the first drug they tried didn’t work, they adjusted the dosage; they didn’t accuse her of not trying hard enough to breathe.

There’s a lot of talk out there in the mental health activism world of getting the proverbial man on the street to understand mental ill health is not laziness and that those people with mental health issues cannot simply “get over it”.  But my experience in the south east is that mental health professionals hold a good deal of prejudice. What other explanation is there for the threats of removal of access to all support, and accusations of not being willing to participate in treatments I had sought out?

I was not a “good” patient, I didn’t get better from a decades long mental health problem in 6, 50 minute CBT sessions. I was offered a therapy in one area which was denied to me in another based on arbitrary access criteria and not my personal circumstances and experiences. I had a history which included anti-psychotics which the assessor was ready to disqualify me on, but absence of psychosis would have prevented me from accessing any other treatment. I was treated as unwilling, unreliable, and difficult because I had the temerity to state that previous therapies hadn’t helped me and was seeking help living my life healthily.

I felt humiliated in that assessment. Unlike the earlier one with the psychiatrist, my experiences and needs weren’t heard. The psychiatrist in the first assessment described my request for therapeutic support as “entirely reasonable” whilst Bob implied a therapy that helped me was asking for the earth.

About 6 months later I received a letter telling me that they were clearing the waiting list and if I didn’t reply saying I still wanted therapy within 14 days, I’d be removed from list. I didn’t reply. I couldn’t face that humiliation again so I guess Bob proved himself right about me.

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Waking up on the wrong side of bed

One of the hardest things about having cyclothymia is waking up on the wrong side of bed.

Sometimes I can feel a low coming, I get the sensation of sitting at the top of a rollercoaster looking down and feeling the brakes just beginning to ease off.  On those occasions I go to bed at night with a sense of foreboding, almost sure I’ll be waking up to a thick brain fog and a sinking feeling in my stomach.  More often than not, though, I wake up, groggily smash at the alarm, stagger to the bathroom, and realise there is a black cloud descending as I try and start my day.

How do you get through a day when you start it by feeling every muscle sink, every bit of energy drain out the bottom of your feet, and your brain slows to a wheezing crawl? With cyclothymia, and though I object to the terminology, down swings are not as severe as that associated with bipolar I and II, or major depressive disorder, the symptoms are fairly indistinguishable. For me, the recognisable difference between how I feel and how I understand those with the above disorders feel, is that though my feet drag along the floor, I still get out the door; though I can’t imagine anything more painful than having an ordinary conversation, I can muddle through the necessities of life and work.

Being able to put on a brave face – a fairly functional face – is both my salvation and damnation.  No doubt that sounds rather unlikely if you have ever suffered a depressive order and simply not been able to get out of bed – struggling on through is better than going under, right?  

When I’m going through a down-swing my mask of normalcy is not perfect; close friends can recognise it the moment I speak – something changes in the tone of my voice.  Acquaintances find me stand-offish and ‘grumpy’.  I ruin burgeoning friendships by appearing stand-offish, I inadvertently offend people by appearing disinterested, I frustrate close friends by refusing to talk about it, or ask for help.   Anecdotally, my friends and acquaintances who have learnt I have cyclothymia/depressive periods have always been surprised; people know something is different but they can rarely recognise the reason so they have no opportunity to offer understanding or give me a second chance.

I’m not going to argue that if I was unable to leave the house in down-swings I would be better off, there are clearly lots of ways that’s not true, and I’m not playing the ‘worse off’ game.   What I will say is that being able to get out the house and being able to limp through my days forces me to confront a life I temporarily can’t manage, friendships I can’t sustain, and life and work stresses which make me feel I’m going to snap in two.  And it happens with no warning.  No warning whatsoever; just wake up one morning with a body blow of shit feeling and none of the energy you need to, say, rearrange social commitments, negotiate a lighter workload for a few days, find the words to explain to those close to you what you need and how sorry you are you can’t be the person they like best right now.

I want to end this post by writing about how I’ve learned to manage down-swings and resolve all the social problems I run into as a result – particularly the emotional hangover that comes after a down-swing where I have to deal with the snubbed friends, half arsed work I did, and squandered burgeoning friendships.  But I don’t have an answer to that yet.  I wish I did.

As with other elements of managing my cyclothymia, I’m coming to realise this is something that’s going to take time to work out.  I can’t change the reality of ‘waking up on the wrong side of bed’, I can’t change the energy levels I have when a down-swing comes round, but with time I hope I can work on changing how I feel about it – reject some of the guilt and self-recrimination that spiral me down further – and the resources I have to be more open with the people around me about what is happening at these times.

So far, I’ve managed to come to terms with the fact that running myself into the ground to get a minimum amount of stuff done in a day doesn’t help me – and often extends a low period further.  I’m also lucky that there is considerable flexibility in my professional life right now that allows me to postpone certain tasks indefinitely which was one of the harder parts of my previous career in retail management and customer service (try dealing with a customer screaming in your face when you can’t even look at yourself in a mirror!).  There is more to be learned, and managed.  I’m trying to work those things through with a therapist at the moment, I’ll be sure to blog whatever I learn.

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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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Filed under asking for help, cyclothymia 101, diagnosis, medication

Cyclothymia is not mild

The first thing I did when I received a copy of the letter from the psychiatrist to my GP was to Google this strange new diagnosis; cyclothymia. I had been in the mental health services system since I was 16 with anxiety, then ‘disordered eating’ and, most recently and for the longest time, depression. Deep down, I always knew I was only ever telling GPs, therapists, counsellors, and psychiatrists half the story; it wasn’t only feeling unhappy that made me afraid of my own mind, sometimes it was being unstoppable, unsilenceable, inspired, frantic…manic.

Every result I found on Google described my experiences up until then; often undiagnosed or misidiagnosed as unipolar depression due to the fact people can make allowances in their life and ‘get by’ with the manic end of cyclothymia, alternating periods of high and low mood with no more than 6-8 weeks without any symptoms, quick temper, hypersomnia and insomnia, easily distracted, lack of concentration…..but again and again, in page after page the same word kept cropping up; “mild”.

‘Mild’ was like a kick in the teeth to me. I had gone to my GP on my knees; I had maxed out my credit cards in a 4 hour spending spree, had a pregnancy scare after unsafe, impulsive sex with a stranger, I’d been sleeping 4 hours a night and my head had been so noisy with thoughts, ideas, self-recrimination, and I had had enough. He had scribbled it all down and got me in to see a psychiatrist who prescribedanti-psychotics on top of the anti-depressants I was already taking. The anti-psychotics were like a hammer to my exhausted mind but I luxuriated in the quietness of my mind.  ‘Finally!’ I thought, ‘I know what’s wrong with me; bipolar is a real illness, with real, famous sufferers who nobody blames for their inability to get out of bed some days, or stop talking on others!’  Later, finding out, on site after site, that what I was suffering was ‘mild’, and frequently undiagnosed as people with it are busy getting on with their lives rather than going to their doctors, the triumph went out of my relief; was I just weaker than all these invisible, untreated sufferers?  Was it just something fundamentally unpleasant about me that meant I found it so hard to maintain relationships rather than, as had thought for a while there, the impact of dramatic and unpredictable mood changes?

Eventually though, after looking at a lot of websites, I started finding small online communities of other people with cyclothymia.  They told stories that I recognised myself; alienating friends, family and partners through their unpredictable changes of mood, being unable to hold down a job or work reliably because some days depression might body slam them back onto bed when their alarm goes off or because on a manic day it’s better to drive to the other side of the country or take a short break in Europe than go into the office.  They were telling each other something important; cyclothymia isn’t mild, it is a milder manifestion of bipolar symptoms.  Bipolar is to cyclothymia as a rock shattered in a massive earthquake is to a rock worn down to dust by steady, reliable, constant erosion; either way it gets worn away*.

The problem with the classification of cyclothymia as a mild mood disorder is that it gives rise to any number of misconceptions about what sufferers of cyclothymia, like me, experience. Trying to explain anything about the unpredictability and disruptiveness of your moods when they are officially ‘mild’, sounds like posturing and attention seeking. My depressive periods may only last a week or two at a time, but in the middle of them I can’t see the end, and I can’t remember ever being better. My manic periods might be read by people who don’t know me so well as hyperactivitiy or enthusiasm, but they leave me exhausted, embarrassed, and frequently poorer.

And the saddest, most dangerous thing about calling cyclothymia mild is that not only do some mental health professionals not take it seriously (I was advised it would eventually become ‘full blown bipolar’ and more help would be available to me then, but to get on with things until then) but some people diagnosed with it begin to believe they are exaggerating, or overstating their troubles.  I frequently remind myself that it is acceptable to shout for help when nobody is listening – that when a depressive mood takes a particularly viscous hold, or I have racing-negative thoughts, or I am so manic I can’t sit down or sleep – that those things are as real, as urgent and serious as any other manifestation of a mood disorder and I, just like everyone else with cyclothymia, deserve to be helped.

* This analogy was borrowed (with permission) from this great post

This post was originally published on the Mind blog, on Tuesday 26th March 2014 but has since been deleted in their site overhaul so the above link is via the Wayback Machine

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