On living with cyclothymia

Some time ago, in response to a '30 days' prompt written by a LiveJournal friend, I wrote about the misconception many people have that Cyclothymia is a 'mild' mood disorder.  Since then I have been consistently surprised by the depth of feeling and appreciation expressed by those who have replied to the entry, or sent me a private message.  With this in mind, I wondered if, nearly 2 years on, I might not have more to share on this topic.

When I first wrote on cyclothymia the diagnosis was still ringing fresh in my ears.  I had followed the advice of the psychiatrist - along with heeding his dire warnings of the inevitiability of developing 'full blown' bipolar - and dutifully begun a lengthy course of anti-psychotics and ant-depressants.  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, as I did with psychaitric drugs, I found a more hollistic route to managing my phsycial 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 causes 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 a year ago.