The joys of having an invisible disability

I have Manic Depression which also goes under the less descriptive but more popular name of Bipolar Disorder. This illness encroaches on my life to a lesser or greater degree every day but it never leaves me alone. In over 40 years I have had one period of remission which lasted 8 glorious weeks, nowadays I’m lucky if I get two reasonable days out of any seven.

I haven’t done any work other than voluntary work for over a decade and for that time I’ve been in receipt of state benefits including Disability Living Allowance (DLA). I get DLA because I’m considered a danger to myself because, when stressed (and this is good stress as well as bad stress) I become suicidal and self harm.

I’ve recently been through the Work Capability Assessment (WCA) for Employment Support Allowance (ESA) and was put into the support group without an assessment by a health care professional. As somebody with a mental health problem this makes me part of a minority within a minority. I believe my GP played a big part in this when he wrote the letter supporting my claim. It was hard to read that I was considered a very real suicide risk should I be forced back to work. Sometimes it’s too hard to know the truth about yourself. He describes me as a “peeled baby”; in public I wear an armour of outward competence but when I remove that in a safe place or with safe people I’m as vulnerable as a baby without skin. It’s exactly how I feel which is why I lead a hermit like existent, of the world but often not in it.

I cannot lead what is remotely considered to be a normal life. To anybody who sees me I show a front of happiness & have a zest for life which quite often doesn’t exist in reality. Some days it’s really hard being me. It’s really hard forgetting to do things despite the reminders I have dotted around my home, some days my memory is so bad that I don’t know where I’ve been until I look at the photos I’ve taken that day. I forget to eat and to keep myself as clean and as tidy as I like. My number one task on my To Do list tomorrow is to take a bath. When was the last time that appeared on your To Do list?

The people I am fondest of most are the people I keep at arms length. My current partner lives and works in West Sussex. Some days that’s too far away but mostly it’s far too close. My health & welfare and finances are registered under Lasting Power of Attorney and too often I have to call the friends who act as attorney to ask them to take hold of the reins because I just can’t cope otherwise. It’s a difficult life though not without joy but it’s a disabling life, I can’t do all I want to do and never will. It’s not my age or my physical health that holds me back it’s my mind.

I’m not a bad person, I don’t break the law and I try to do good within my community but, in spite of this, I am often reported for benefit fraud and cat called by neighbours for being a drain on society. I worked long and hard hours in all the jobs I’ve held and paid lots of money in taxes and National Insurance (NI). I’m not taking anything back that I haven’t first paid in but if you can’t see what’s wrong with me then I must be swinging the lead as far as I jolly well can.

I have a bus pass that I have to fight tooth and nail for but, because I sometimes run for the bus, I find myself at the end of biting comments. If you can’t see my disability how can I possibly have one let alone need a bus pass?

If I use the disabled toilet (not the ones that you need a key to unlock them) then there is always one person who will tut and mutter theatrically under their breath about my lack of disability and usually before they sneak in to use the facilities themselves. Disabled people don’t judge me by my appearance. Most disabled people know that if you can’t see my disability then it doesn’t mean that I don’t have one.

I get angry at these negative attitudes. At times I get so angry I verbalise my distaste at the people passing judgement which in turn can actually trigger a manic episode. I’m often at the end of cutting and nasty comments by those who claim to have personal experience of mental health problems. One person told me that there wasn’t a down day in the world that couldn’t be improved by baking a cake. Try telling me that when gravity pulls me into the sofa and refuses to let me stand up for hours at a time.

One mental health nurse told me I couldn’t be suicidal because I could verbalise my anguish. Another mental health nurse told me that carrying on seeing him was pointless because I was well versed in my illness. You see don’t you that I’m not disabled because I don’t look it?

When I went through the WCA process I was denied help by all the organisations I reached out to for lots of reasons. One mental health charity told me that they didn’t help people, another organisation said they don’t make allowance for disabled people unless they are in wheelchairs and a third told me that they thought an hours journey across the city which would be two buses either way would be reasonable for somebody without a physical disability because, of course, if you can’t see a disability then it doesn’t exist. Level the playing field all you like but if I can’t get on to it to use it then it’s useless.

I get angry at the pure nastiness, incandescent with rage and the pure thoughtlessness and despair at the discrimination bandied around by those who are supposed to help. Raising awareness of mental illness is important but then so is education about mental illness and the debilitating effect it has on those of us who have them.

I have an invisible disability but I am not invisible, I won’t be ignored and I won’t let you bully me. Get used to those of us with invisible disabilities, like it or not, we’re here to stay.

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If I’m going to be labelled…

There’s been a sense of discontentment within in me or a long time and it’s all about the label I’ve had bestowed upon me. Don’t get me wrong, in this case the label is very useful. It gives me an idea of what is going on inside my head so that I have an idea of where the illness begins, how it can be treated and who I actually am.

A few years ago I was reading on social media of a mental health conference where the vast majority of attendees were people with mental health problems of one kind or another. Allegedly, it was widely advertised but I’d never heard anything about it. I wouldn’t have gone anyway for reasons best known to myself but the fact was that there was this conference and the people there were tweeting that they were talking as though they represented me. One of the discussions was about what “we” should call ourselves. I refuse to be labelled a spoonie or any other turn of phrase that labels me in a way I’m not happy about so I certainly wasn’t happy to see people trying to make a decision so that other people could refer to me in a way that was palatable to them.

At the same time it seemed that people with my illness had gone through this process of being labelled as having Bipolar Disorder where we had been talked of as having Manic Depression. Bipolar Disorder is a difficult one for me. It has to be explained, it’s hijacked by people who don’t know what it means to describe normal mood ranges and it has so many variants those of us who do have the label can be as confused as anyone who doesn’t.

Bipolar Disorder has to be explained and often people’s eyes glaze over and you can see them shutting off whilst obviously regretting asking what it is. I don’t think that people necessarily understood the detail when I’d say I had Manic Depression but they seemed to grasp the idea of a mood disorder much better when it was more starkly descriptive.

For some reason today seems to be the day that I want to stand up and bed counted. Call yourself Bipolar if you want to, write Bipolar Disorder on my medical records if you must but I’m happier saying I have Manic Depression. Labels are just labels but it’s my right to choose the language mine is written in.

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Me and my thyroid…

One of the problems with using lithium for long periods is that it can badly affect the way your thyroid works. It can be destructive and it was one of the things that worried me the most when I was taking it. Regular blood tests are a must when you take lithium, as they are used to check the levels of lithium in your blood stream and also thyroid and kidney function.

An under active thyroid in somebody with bipolar disorder can lead to more severe episodes of depression and an over active thyroid can increase the severity of manic episodes. Thyroid problems occur more often in people who have rapid cycling bipolar disorder (4 or more mood swings/episode in a 12 month period) and/or mixed states. I have ultradian cycling disorder (several mood changes a day and rarely seen) and also have mixed states so it was perhaps a foregone conclusion that I would develop thyroid problems.

My thyroid function gradually waned over a long period of time and, at first, the change was so minor that it wasn’t considered a problem.

A couple of years ago during a very hot summer I was cold all the time and needed a winter weight duvet on my bed as I couldn’t warm up. I put on weight and depressive episodes became more pronounced. My GP did a thyroid function test and it showed that my thyroid had suddenly started to struggle badly. I was prescribed levothyroxine and I stopped feeling cold, lost some weight and my thyroid worked well again.

Recently I’ve been having manic episodes that seem to hit a peak that they never have before. Instead of becoming unmanageable the energy became useful and it was easy to manage it and channel it into something useful. My depressive episodes have become more marked. In addition I’ve been cold again, and in a heat wave I’m sleeping with a winter weight duvet. I’ve put on a little weight and developed constipation so I knew that my thyroid was struggling again. A blood test has confirmed that and the dosage of levothyroxine has been increased. There will be another blood test to monitor my thyroid in the near future and that will give us a clearer picture of what is happening.

The big question for me is whether this is lithium or age related. The dysfunction began when I was taking lithium and had taken it for 20 years with just a few breaks. Age related thyroid function was said to show in women who had the “three effs” – fair, fat and forty. Outdated now and not a typical patient!

I have a suspicion that my thyroid problems are a result of lithium use. Despite regular checks it does appear to have fallen foul of it. I resent having to have had used lithium for such a long time. I always say that if psychiatrists had to take lithium themselves then they would push for research to find an equally effective alternative. It is foul, difficult to swallow and whilst I was taking it I was seldom medication compliant. Since stopping lithium if I don’t take my medication it is because it has slipped my mind.

It’s important to remember the impact that poor mental health can have on the body. Mind and body are not separate entities they are, after all, inhabiting the same space.

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How I survived the ESA/WCA process

Today a brown envelope dropped through the letter box. I wasn’t expecting anything from the Department of Work & Pensions’ (DWP) so I knew what the letter was and I was right.

In the middle of December last year (2013) I had sent away the form that was the beginning of the process that would convert my Incapacity Benefit (IB) to Employment Support Allowance (ESA). It is a bit of a bulky form and it demands information that you wouldn’t normally share with a stranger. It exposes your soul to the world and, if you have a mental health problem as severely as I have, it’s a delicate and easily destroyed soul.

I had filled in the form myself even though I had been led to expect to have help from a mental health charity or the Citizens Advice Bureau (CAB).  MIND which is the only mental health charity in this area told me quite simply that they didn’t help people. Not they didn’t help people filling in soul destroying forms just that they didn’t help people with anything. I tried to approach CAB but they don’t answer their phone and standing in a queue for at least an hour to see if they’re willing to help you is far too stressful for me. They don’t answer the phone or have an answering machine which I was told was down to resources but for me it means if I could get in to the office (which would make my health problem worse) there is the distinct chance that they wouldn’t help me anywhere. One other charity was suggested to me but the stress involved in taking two buses over to a part of town that I didn’t know was considerable and would be damaging to my health. So I was left on my own to do my best.

An appeal on social networks for help ended in people sending me links to websites, forums and blog that I just didn’t have the concentration to trawl through while the time ticked away and the act of filling out the form got more urgent.

I was advised to look at the form logically and decide what information they actually needed as opposed to that I felt that they needed to know. I wrote all this down on a copy of the form so that I could get it in the right place from the outset. I found that I could frame my answers in a way that told them what they needed to here but also said what I had to say. My local printer Minuteman proved what good friends they were by chatting to me about things that would distract me as they to copied the forms for me to retain just in case.

I posted the form to Atos and heard nothing. Their call centre could only tell me that the forms had been received but not give me a timescale for when I would hear from them. It was agony.

A friend who has Lasting Power of Attorney (LPA) over my finance and health & welfare talked to me of how worrying about when I would get the letter wouldn’t make it arrive faster and that projecting about what it would say would not ease the process. I began to be able to detach from the idea of reading the letter and it being bad news. I learned that planning how I could appeal if my WCA gave the wrong result was good but that projecting about how awful it would be was destructive. I saved as much money as I could to give me some sort of buffer in the event that I would lose my already meagre income.

In the news recently it was announced that the company taking over from Atos would not be doing so until next year and I had resigned myself to a long wait and, even though I was taking steps to reduce the stress I was under, I was still experiencing stress.

This stress has manifested itself with memory loss, derealisation and depersonalisation. All painful, distressing and difficult to deal with.

Then the envelope from DWP arrived this morning. I knew, as I have said, that it could only be about the ESA/WCA process. I opened it straight away as putting it off would only prolong the agony of not knowing what it said. It didn’t say in the first few paragraphs that I would have to attend an assessment with a health care professional and I realised quite quickly that it was good news of a sort. Then I reached the sentences that read, “You have been placed in the support group because your illness or disability restricts the possibility of working. This means you do not have to take part in any work-related activity.”

I burst into hysterical tears and read the lines again and again and again. I rang the GP who holds LPA for me and told him the news. That made us both laugh and the stress began to lift from me. I then rang the other friend who holds LPA for me and cried happy tears down the phone at him. In between times I rang and sent a text to my sister. I tweeted it and all the time I was crying and the stress that I didn’t know I was carrying disappeared along with the stress I knew I was carrying. I’ve rung my GP so that I can thank him for the amazing letter he wrote that I’m sure carried a lot of sway with the person who made the decision.

I eventually read the whole letter and discovered that I am going to be better off financially. It’s not the retire to the Bahamas on a private yacht kind of money but it’s enough to be able to live a little better.

The money I have saved is now a nest egg of sorts and there in case I want or need something that I wouldn’t have otherwise been able to afford. I transferred a little money to my sister as there is 260 miles between us and I wanted to be able to celebrate with her.

It’s unusual to get this result when there is a mental health problem involved but, if you’re in the system and you have a mental health problem then please take hope from this result. Remember that the percentage of people who get the result that they need first time around has to come from somewhere. I’m part of that percentage and hopefully more people with mental health problems will be too. When the system works it works well and for that I am truly grateful.

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The art of self neglect…

Self neglect is a difficult subject to write about and even more difficult to come to terms with. I’ve always smudged the words and said that I don’t look after myself very well but the fact is, no matter what I choose to call it, I neglect myself. My coping mechanism are geared towards looking after a friable mind so my body and their surroundings are the target of that neglect.

There is always a certain amount of give and take in what I choose to do and often the choice is not mine; bipolar disorder has a bad habit of stealing time and skills away from me and hiding them in strange places. I have Bipolar I, the big one, and not in a text book way. I have features that are so rarely seen then most psychiatrists let alone a GP will never see them. Keeping the beast in the cage is the big task everyday. Sometimes I succeed, often I fail and often I am so consumed with doing this that I fail at the rest of life.

I have the same tasks as most people in any day – washing up, cooking, eating, cleaning myself and my home, looking after my animals etc. but for every task I do then I have to choose something not to do. I can never guarantee how I’m going to be at any time in any day so I’ve learned to capitalise on the days that I waking up feeling good or when my mood changes into something positive. If the sun shines and I can do it then I go out with my camera because later may be too late and tomorrow may be the sort of day when it’s difficult to move from the spot on the sofa that it’s easy to become welded to.

Things get done but only when mania is in the middle range. If I’m too high (frenetic energy, anger, short fuse, edgy) then there is no chance that I can focus for long enough without shouting and swearing at what ever it is I’m trying to do. I do things but everything I do becomes an abandoned task. Below the medium range and I have enough energy to do things that help me lay down memories and allow me pleasure. In the middle range of mania I can achieve little targets and con myself that, in that moment, I’m actually normal. In depressive times, especially the episodes that steal the ability to know which way is up, it’s always a case of being sat on the sofa and thinking of what I’d do if I could just get up and move. The list of things to do gets longer and longer which ever state I happen to be in and it’s taken me a long time to realise that I’m never going to get to the end of it.

If I manage to get to the end of the washing up (currently about every 10 days) then that means I’ve forgotten yet again to take something out of the freezer to eat that evening. If I do a load of washing (in a twin tub) then the hoover is left to gather dust. If I clean the guinea pig out then that takes away a whole morning as I battle to resist the urge to tweet, make tea, talk to someone on the phone. Too many distractions turn a 20 minute task into a morning of hard labour.

There are too many meals that are not cooked or not eaten. Too many days of grazing on things with too much fat or sugar which sets my mind frantically worrying about what I’m doing to my physical health which sets me off into a cycle of obsessiveness which feeds the mania/depression and then the whole day is gone. Food not eaten, baths not taken, hair not washed and home in a bigger mess than when I got up.

I struggle and I struggle hard so you can imagine how big a deal it is when I let people into my home for whatever reason. Few people can keep their feelings away from their faces. I want to tell them that it’s more mess than dirt but you can see their eyes darting from poorly decorated walls to grubby skirting boards all the time wondering how I live the way I do. People always claim to understand the problems that mental health brings and their understanding is based on their own experiences and those of their family and friends. People like me aren’t exactly in the majority.

So when I say to you in passing that I don’t look after myself very well I’m not saying that there’s something a little out of place on the mantelpiece I’m saying that I’m only just holding it all together some days.

We all have narrow experiences and if you promise not to judge me by yours then I won’t judge you by mine.

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Managing anxiety doesn’t mean it doesn’t exist…

I can’t remember a time when I haven’t had anxiety in my life to a lesser or a greater degree.  Anxiety has, at times, left me unable to eat solid foods, take routes to different places that don’t involve crossing road and has developed in to Obsessive Compulsive Disorder (OCD) that, at times, threatens to overwhelm my life.

I manage my anxiety though how well I do it varies from day to day. If I want to do something badly enough then I will do all I can to do it. What should be an enjoyable treat can often turn out to be disastrous and energy draining. Social functions where there are a lot of people I don’t know suck all my vivacity and the little bit of functioning sociability I do have runs away at a high speed.

I don’t believe that anxiety just happens. I think free floating anxiety is a myth and that all anxiety comes from something. We may not know what that something is and the origins can be locked in the past in an unforgotten incident but there is always something. Fears are passed on from generation to generation – we learn to fear from those who should be teaching us to be unafraid.

I check, double check, triple check and then check all over again when I’ve been cooking. On occasions my food has gone cold as I stand at the hob checking that the plates are off, that the socket is switched off and that it’s safe to leave the kitchen. This comes from two incidents that could have ended really badly. I have memory problems which are rather more than the usual human forgetfulness that comes with age. My memory difficulties are turbo charged by Bipolar Disorder. I forget to turn things on and can find myself eating at midnight instead of hours earlier because each time I went into the kitchen to cook something I forgot why I was there and the cooking just didn’t get done. These memory problems also mean that I forget to switch things off. I daren’t even think about cooking with gas because I really couldn’t guarantee not blowing myself up. I have started a chip pan fire because I didn’t turn the hob off when I’d finished cooking. I was lucky that the only damage was the soot that the smoke left and a couple of coats of paint made things look better but, had it happened just before bed time, I may not be here writing this blog now. I have never tried to fry chips since then. On another occasion I left a thick glass ashtray on an electric hob and switched it on. Luckily I wasn’t stood near it when it exploded. Shards of glass that had to be dug out of the ceiling would have, at the very least, left me badly scarred.  I am obsessed and anxious about switching things off because I have seen what happens when I don’t.

Once I get out of the door there is a seemingly unstoppable routine of turning the door key, rattling the door and trying desperately to let go of the door handle. If someone is with me it’s easy not to do this because I reason that if I didn’t lock the door then the other person will remind me. I need reminding and being reminded gives me the confidence to ignore my anxiety and reclaim the time I waste. I have gone out and left the door unlocked more than once. The feeling of opening a door that hasn’t been locked and not knowing what you’re going to find is desperately dreadful. When you can’t remember if you locked the door or not to begin with it’s quite devastating.

Having got out of the flat brings the bigger fears that I find it harder to cope with. I have a fear of being knocked over by a car or a bus. I have been knocked down by a car and have had a few near misses so it’s an anxiety that has very deep roots. This fuels my anxiety about crossing even the quietest roads and since I’m the type of person who enjoys walking long distances then even the shortest walk has peaks and troughs of anxiety.

I don’t have many social skills so if I see somebody I know coming towards me I worry about what to say and how to say it. I talk too much at the best of times and my memory means that I can start a sentence and have no idea how to finish it. The anxiety of not being able to manage social situations is made many times worse by appearing to be a senile idiot with an IQ in minus figures.

I have Irritable Bowel Syndrome and anxiety will only ever  make it worse. The only thing I can remember with any certainty is where the easily accessible loos are in Bristol!

I won’t say I live a pretty decent life in spite of anxiety. I live a pretty decent life to spite anxiety. I take photographs every day. Time with my camera absorbs me and lets me take my hermitage with me wherever I go. It creates a safe space around me and, in a mindfulness kind of way, it keeps me in the moment and anxiety cannot take control if I live in the moment.

I continue to make plans for little trips and have managed to overcome the anxiety of being away from home and spend a few nights away from home a few days each year. This is a huge leap forward.

I hear about people who have anxiety at such a level that their lives are frozen by it and I’m glad I’m not like that but equally it is often intimated that I’m not really in the grip of anxiety because I do live a life. The difference is that I’ve learned to manage it. I’ve learned to choose to challenge my anxieties and have the experiences that I need to enrich my life. I’ve learned to medicate myself so that IBS is less of a problem and to take sleeping aids with me when I go away so I’m not awake worrying about what may be going on at home. I practice mindfulness and have done for many years and it is the one single thing that has enabled me to face challenges.

I fear, I am afraid but, and I’ve learned this the hard way, the only way to conquer fear is to be, at least temporarily, fearless.

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Life after lithium, an update

Last year, after about 20 years of using lithium as a mood stabiliser, I decided to stop taking it.  I had got to a point where I was taking it less and less and when having tests to assess the levels of it in my blood it showed that it was consistently below therapeutic levels. I talked it over with the friends who have registered Lasting Power of Attorney (LPA) over my health & welfare and explained that I thought that since I was taking a potentially harmful drug that wasn’t actually doing anything to me or for me then I wanted to stop taking it. They both agreed with me and the GP friend was very supportive.

I talked it over with my doctor when I next visited him and he was a little more cautious but encouraging nonetheless. He gave me his blessing which was immaterial as I’d already decided to go ahead anyway.

Tapering off lithium use is essential as the rebound effect tends to throw people into mania and mania is the state where I am at my most fragile. It was a gamble but a gamble that I was prepared to take.  So what happened?

Almost a year on I’m still not taking lithium. The bipolar disorder is still in the stable yet unstable state it was before I stopped taking it proving, perhaps, that good management is a big factor in stability. My kidney function has improved, my thyroid isn’t so good but subsequent tests suggest this is age related and it has survived the ravages of lithium.

I was taking my medication about half the time I should have been when I was taking lithium because it’s such a terrible thing to take. It’s not just the raging thirst and dry mouth or the weight that you pile on it is also physically unpleasant to take. Since I stopped taking lithium I rarely miss taking medication.

My base drug now is lamotrigine which seems to be keeping me stable but, again, I think that good self management has a lot to do with it.

So stopping taking lithium has been a step forward for me. There was no backslide into depression or a destructive episode of mania. I’ve lost weight and I have more energy and, as a result, I’m able to manage bipolar disorder a little better. Life has improved.

Making big changes to medication is a gamble but it can pay off. Preparation, discussion and knowing what the worst outcome could be helped me to decide that it was worth all the risks. So far all is well but, should my mental health deteriorate in the future, taking lithium again would always be a consideration.

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Twenty three years and counting

When I first had to stop drinking and using drugs 23 years ago I was well aware that even though I knew that I was looking at certain death if I carried on a large part of me didn’t want to stop. Alcohol particularly had been my solace and my shield since I was 14 and I wasn’t sure that I could live with or without it.

My first two years of sobriety were spent mourning the loss and wanting to drink more than when I was drinking. It was a confusing time to say the least and one that didn’t start to improve until I got peer support. I learned a lot from my peers and a large part of it was about how I didn’t want to be. I knew the answer wasn’t to be the opposite of what I didn’t want but to be different.

One thing that struck home for me was how much time people spent in meetings and talking to other addicts. The world was a place they went to when they weren’t in meetings and, it seemed to me, meetings were pubs for the soul. I’d used alcohol and drugs as a way of retreating from the world for a long time and it seemed that they were promoting a way of life that encouraged a retreat from the world. There was a lot of “people out in the world don’t understand us” talk. What they appeared to be saying that was, within the meetings, nobody is special or unique but walk out of the door and we’re all so special nobody could understand us. A very wrong assumption to make; none of us are unique and everyone is misunderstood for one reason or another.

I thought then, as I do now, that recovery is a loaded word. Recovery for me means living the life I have to lead to do what is best for me as a whole person. The alcoholic is a part of me, not my entirety. The far greater influence on my life is Bipolar Disorder and that has to be managed first. If I don’t manage that then I don’t have a cat in hells chance of maintaining a life of sobriety. For this I am criticised by other alcoholics, some of whom purport to be friends. They assume that the medication used to treat Bipolar Disorder is mood altering as opposed to mood stabilising. I don’t even take a mood stabilising medication but the presumption is that I do. The only medication I take specifically for Bipolar Disorder is one that is used to treat epilepsy. I also take levothyroxine to help my under active thyroid gland. None of these drugs give me highs or take the edge off the world but they do take the edge off illnesses that push me far too closer to drinking than I’m happy with.

Being clean and sober is exciting and it’s tempting to challenge the world and want to right the wrongs especially in the early days and years of recovery.  Many of my peers decided that working with other alcoholics either as a profession or in a voluntary capacity is the only way forward. They want to immerse themselves in a closeted world because they are convinced that being part of the real world is a sure fire way to drink again. Is working with alcoholics and addicts truly leaving the old life behind? There are ways of changing the world and paying back debts to society that don’t include staying in a destructive world. I see the temptation but I have not desire to inhabit a dangerous place because it feels familiar.  I didn’t stop drinking to find myself equally imprisoned by a way of life.

Freedom from drink and drugs should be unconditional.  It’s important to concentrate on recovery and get to know yourself but you can’t do that by inhabiting the old world even if it is in a new way. You easily become absorbed in a world that has a new terminology and is perhaps more of a crutch than you care to admit. Recovery is about breaking out of comfort zones and daring to live again and you can’t do that with one foot in the old life no matter how well meaning it is. I’ve done voluntary work within my local community and would still be doing it if Bipolar Disorder allowed me to.  The last thing I did before I stopped voluntary work was to act as a troubleshooter between the local council, traders and contractors in the revamp of a retail street whilst the road was resurfaced. My role was to make sure things went smoothly enough so that traders could keep on trading and to minimise their losses and to make sure that everybody was kept informed about what everybody else was doing. Voluntary work isn’t always about charity shops & community programmes, it can be as high powered as you need it to be. There are high flyers at all levels of society.

When I stopped drinking I was still in a worthless marriage and got divorced a year or so after I stopped drinking & using. I then took a deliberate break from that kind of relationship and concentrated on re-establishing the relationships with friends and family as they had seriously been affected by my behaviour.  It was all part of the getting to know myself process and I slowly began to change into a better person.  At least one man I knew decided that I was desperate to be in a sexual relationship with them but there are amazingly simple ways of chasing them off.

A couple of years after I stopped drinking I was eventually diagnosed as having Bipolar Disorder and the management of that became, and still is, the centre of my life. If I don’t manage it then I don’t have a life and the things I do to remain mentally healthy also help maintain sobriety and growth.

I became involved with a man shortly before I was diagnosed and when I was incredibly vulnerable. What seemed to be a healthy relationship was actually destructive.  He was mentally abusive in a subtle way and pushed all the buttons that made me feel worthless and insignificant yet at the same time he made me feel as though he’d fall apart if we split up. It took me nine years to get away from him in what was a 13 year relationship but it has made me a lot wiser about relationships now.  I don’t demand that relationships are solely on my terms to but I don’t enter into or stay in relationships that aren’t give and take.

There is a lot I would change with hindsight but if I did would I be the person I am today? The person I am today is the person I like being. I’m not interested in being popular or being at the centre of attention of things. Give me my camera, my animals, time and space and I’m content.  I’m happy being a hermit and I’m happy with my hermitage.  I have come to terms with who I am and I’m not that bad after all.

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Last night I met a group of strangers I already knew…

Last night I found myself in a pub that I hadn’t been in for over 20 years. It had changed clientele since I’d been in there. 20 years ago it had been a little rough around the edges being down to earth with cheap though decent beer and now it is smooth and the soft drink I had was a copy cat coke with prices that exceed those I paid in London recently for the real thing.

Memories came back of the lifestyle that I’d left behind. Back then I was one of many local drunks and I never got through a day without “taking the edge” off with copious amounts of booze and illegal substances. They weren’t happy memories.

The person I am now has no crutches to shore me up when meeting people I don’t know but, because I’d tweeted with them for months they were people I almost knew. I’m not good with groups of people and I’m quiet around strangers. I have memory problems and I can’t remember names so being faced with Twitter handles and not knowing most people’s real names I found it difficult. Thrown in was an anxiety that bubbles under all the time. It’s like a vague sound that you can only just hear and don’t know where it’s coming from. It pecks away at me a lot though it’s worse some days than others.

We had all been curators or were going to be curators of a rotating account called @Bristol52. The people were lovely and chatty but I struggled. I’m not good at small talk and I found it difficult to concentrate on what people were saying in a noisy environment. But I did it. I got there, I stayed a respectable amount of time and then I left to take a walk home taking photos as I walked.

I won last night because I refused to give in to the anxiousness and I had quite a nice time despite it. I knew when to call it a night and when it was the right time to go home. I was wise enough to know that a walk home in the cold night air was better for me than a bus ride. I knew that when I got home a cup of coffee and a chip butty would comfort me as much as a chat and a cuddle with my animals. Next time (and there will be a next time) it’ll be easier. It won’t be comfortable but it will be less uncomfortable and I will enjoy it more.

Social networking is great for me. I’m a hermit by nature but I keep in touch with life and reach out more than I would if it didn’t exist. Twitter has become my main platform for blogging and showing off my photographs. The @Bristol52 account gave me an opportunity to show to Bristol at least that people with mental health problems were actually normal to spite an illness and it was a good experience. If the cost was a slightly uncomfortable with lovely people I’d like to meet again then it was a price worth paying. Next time the cost will be less and I’ll grow just a little bit more. Comfort zones stunt me, moving out of them strengthens me. Roll on the next gathering!

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The unusual activity in my mind…

Yesterday I had one of my more disturbing episodes. This particular kind is always depressive which is a blessing really as if they were manic I just may act on the feelings that I have to fight very hard to suppress. They are unique and my former psychiatrist who has known many hundreds of bipolar people over the years has never seen them in anybody else. He would often tell me of the “unusual picture” that I presented.

I have often tried to describe these episodes and always fail. Bipolar Disorder is notoriously hard to describe to anybody who has never had the experience. People will often say that they understand because of the family member or friend that they know with a diagnosis but, to put it bluntly, they are clueless.

In case you don’t know Bipolar Disorder is an illness characterised by the distortion of moods. People with the disorder move from low to high moods. In some people this is a slow process, in others it happens seldom and in yet others the mood swings happen with a greater frequency. I have ultradian cycles. Put simply an ultradian cycle is one that occurs more than once in a 24 hour period. Infradian cycles are ones that occur over a period of days.

Often people mistake the word moods for emotions. Mood is about feeling happy or sad and bipolar mood is about having those moods to the extreme. Emotions are felt by us all though, for those who have bipolar disorder, when we have periods of illness or instability those moods can be exaggerated. Bipolar Disorder is a lens that magnifies and distorts.

The kind of rare and unusual mood swing that I had yesterday has happened to me more often than I’d like in the past and, even though they happen less often now, they don’t get any easier to cope with. When I first described them to my psychiatrist he thought that I could be describing epilepsy, namely complex partial temporal lobe seizures. Over a period of time backed up with a normal EEG it became obvious that the only link to epilepsy was that it appears to be on the same spectrum as bipolar disorder.

The episodes happen in this way: I have a very sudden drop in mood. On a scale of 1 – 10 where 1 is the lowest possible mood and 10 is the highest I drop to 1. Unlike a cycle of moods where I move from high to low with rapidity these mood drops happen when I’m in the “normal” range which is from 4 – 6. There is no warning, no indicators that anything is about to happen and they are always a shock. I am violently plunged into a depression and I am immediately beset with the urge to commit suicide. These are not suicidal thoughts but a real desire to die. I fight the urge very strongly and, as you can tell, so far I have succeeded. It worries me greatly that one day I may lose the battle and will have been conned out of my life by a conniving and underhand illness.

It takes me a few minutes or longer to understand what is happening because as well as the violent drop in mood a storm happens in my head. It’s a storm of feelings, an onslaught of despair and fear combined with an absolute and utter dread of the future. I want to self harm (and often do) and cannot envisage living the rest of my life having these episodes. It is a period of madness and mayhem over which I have no control. During the episode my forehead becomes very hot. It is as if my brain is generating heat.

As the episode progresses I can text and ring people. I ring the two people who have Lasting Power of Attorney and let them know what is happening. This is really important as they need to know what is happening just in case all goes wrong and they have to make decisions about treatment including sectioning. I can be quite honest and open with them and neither of them blanch at words like suicide. They respond pretty quickly with sound advice and comforting words.

After about an hour all begins to quieten down and I’m left exhausted. Sleeping for 12 hours after one of these episodes is not unusual. The next day I’m tired and quieter but I can go out and do things as long as I don’t have to be too sociable with people. I tread carefully and sleep a lot over the next few days.

These are episodes that I have come to terms with. They’re an experience that I can’t stop and it is literally a case of having to learn to live with them because the only other option is dying because of them. They’re an extremity in an illness of extremities but, as with all other aspects of the illness, I learn from them and have to move on until the next time.

We can choose how we respond to our experiences and I choose to learn and try to arm myself against them. It isn’t always possible but if I give up trying then I give up living and I’m not ready to do that yet.

 

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