My Time to Talk

Today is Time to Talk day a chance for everyone to get talking about mental health and as I am currently trying to write a little each day I thought that I really should coincide with this amazing day.

I have experienced mental health problems for nearly twenty years and I have also worked in this sector on and off for around 8-9 of those years. For me, it has been incredible to see the difference in attitudes towards mental illness between then and now.

My interest in mental health started when working on American Summer Camp as a teenage volunteer. I chose to work with challenging adults rather than spoilt American kids as I had spent many years attending a camp in this country run by an amazing organisation called Forest School Camps. The camps they run are a mixture of rich kids, poor kids (that was me!) and people with special needs. I struck up a friendship one year with a man called Leigh who had autism. I am pleased to say that we are still penpals 22 years later and we meet in person every Christmas.

American camp was a completely different world! The work was pretty full on (my first 'class' involved the correct way to clean a penis...) and we were really expected to be 24 hour carers/ nurses and companions for cabins full of adults with very differing needs, some physical, some mental, many with both.

Despite the lack of rest/ food and spare time, I found that I loved this. I still have so many memories some good, some just a bit odd. Something that will never leave me was the time there was a 'twister' in the area. Now, this may be pretty common for the residents of Minnesota but for me it was incredibly scary as we were told to stay in our cabins and put the mattresses against the windows. However it wasn't just me who was scared, there was a middle-aged woman called Barb who had schizophrenia, a lot of her delusions and hallucinations were around God ending the world, extreme weather was a sign for her that this was taking place and she was very agitated. So putting my fear aside I sat with her and we sang (hymns I think!) and we both got through it. Funnily enough, this is now one of my happier memories.

What really struck me was how badly people with mental health problems were treated in the States, well, at least, the people who came to our camp. They mainly all lived in care homes that were publically funded and I think many had been 'written off' by society because of their mental health problems. There seemed to be a one size fits all approach to care and their clothes and personal care were all pretty awful. Yet the most disturbing thing was taking day trips out. I hear stories of how people used to pay to stare or poke people in Bedlam many years ago. This was still happening in Middle America. People would literally stand and stare at our group with mother's actually pointing out the 'strange people' to their kids. I'm sure this was just one end of the spectrum as generally mental health care in America is more advanced than our system over here but the lack of understanding was incredible.

My first paid job in mental health involved working in a secure unit for people with severe mental health problems who had generally committed a crime and spent time in a large secure hospital like Broadmoor or Rampton. This may have been a strange choice for a gap year but I wasn't really keen on working in a shop or bar. The most interesting thing here was my friend's reactions when I told them about my job. Generally, they were horrified! They couldn't understand why I would want to work with 'people like that' and wasn't I scared? The good thing about the job was that you weren't told what crime the patients had committed until you had worked there for a number of weeks. This was really important in not judging people and getting to know them without any prejudice.

Again, like many of the people I had worked with in America many of the patients were incredibly institutionalised and hadn't ever really lived a full or independent life as a result of the horrific institutions that used to 'house' people with severe mental health problems. Again I know that this was the severe end of the spectrum. The idea of the unit I worked at was that we were preparing people to live independently, including spending time working in jobs, going to college and spending time with families. I do remember though really sadly the media finding out that one of the patients (who was never a danger to the general public) was working part time at Tesco. There was a media uproar and witchhunt which resulted in him having to give up work and set his recovery back by a long way.

On a personal level, I first started experiencing mental health problems when I was at University and also still working as a mental health outreach worker. I remember the shame and horror I felt going to my first psychologist appointment (about 9 months after I first went to see my GP, that's another thing that has thankfully changed, waiting times should be a lot shorter these days!) I wasn't even living in the same area that I was working but the idea that I would bump into any of my colleagues filled me with horror. My diagnosis at the time was also 'just' depression which has the least stigma attached to it. I didn't tell my work about these difficulties and actually although my mental health has fluctuated over the years, leading to periods off work, Mind was the first employer that I actually told about my mental health (in fact my diagnosis was actually seen as a positive in getting the job).

We still have a way to go, my work with the media still flags up horrific labelling and stigma but I am very proud that I work alongside and with so many incredible people who have full lives in spite of or even because of their mental health problems. I know that there are still some people on Facebook who have probably defriended me because I have been open about my diagnosis, which these days is a much more misunderstood condition, bipolar disorder. I still face some stigma but I am so much more comfortable being open about my diagnosis. No more having to 'pretend' to have the flu! One of my friend's said to me the other day that she didn't really remember me being ill in my twenties when she first knew me. On the contrary, I had very long periods of being extremely unwell but I just didn't tell anyone! I used to live alone and it was so easy just to hide myself away.

The biggest contrast for me has been fundraising for Mind. I first raised money for Mind around 12 years ago when I did a trek to Machu Picchu and it was so difficult... Literally people would look at me when I told them who I was raising money for with no sympathy. Of course, back then my own mental illness was well 'in the closet' so I didn't really have a good reason to be raising funds but still I had to just arrange lots of fun events and almost mention Mind as a footnote. Over the years, I have raised money for other charities and most of them were a breeze, specifically if they involved children. However in more recent years I ran The Great North Run for Mind and smashed my target. Just last month I took part in Run Every Day January and doubled my target for fundraising, without even having to beg. Alongside donations, I have had so many people message me about their own mental health problems or friends/ family.

In fact, I would say that is the biggest difference. When I tell people that I work in the mental health sector these days they are likely to say 'wow what a great job' rather than sneer. They are also much more likely to tell me about their experiences. In fact, every event I have ever arranged, mainly in newsrooms, there has always been at least one person who has come to speak to me or one of my colleagues after any talk/ presentation about their own mental health problems. Obviously, the ideal situation would be if the real number (a quarter of the room) stood up and shared proudly, but I have every hope that we will get there!

Early Warning System?

We all know the key to surviving catastrophy is to put in an early warning system. With earthquakes, hurricanes and other natural disasters often being picked up before they hit, the people in their path can stock up on tins and baton down the hatches. In theory this should minimise damage and give people the best chance of survival.

This is the same with many mental health problems. The very nature of mental illness is that it will fluctuate. Some find that it follows some kind of pattern or that periods of illness are generally triggered by many things. For some however ill health does seem to come out of the blue.

I came accross a really good guide from the mental health charity Rethink Mental Illness yesterday. It is guide and number of videos on keeping well with bipolar. I liked it because it was pulled together with professionals alongside people with experience of the illness. The key seven things they found were:

•  Spotting early warning signs 
• Looking after your wellbeing 
• Being in control 
• Doing what works for you
• Making decisions about medication 
• Talking to people who really listen 
• Getting support from family and friends

Reading this in my current state made me want to rip it in half but I know that if I read it when I was well then I would probably find it very useful. Mental illness can make you feel like you are incredibly 'out of control' a lot of the time and so finding a way of making sense of it all and wrestling  back a bit of control is really helpful. I actually attended a course recently about 'Managing your bipolar' which was really interesting and insightful, until I actually became ill halfway through the course and then sitting in a room discussing a 'theoretical' feeling of depression was just too much and I had to leave the course. 

I was surprised to find that I do actually have my very own early warning system around me. I have been told by two of my best friends that they could tell I was high over the last few weeks but didn't know what to do. I thought because my mania was quite subtle (i.e. I don't think I can fly or talk really quickly or anything too obvious!) that those around me never notice, but my friends do seem to know me far too well and could see straight through me well before I did. The question is what would I have done about it if this alarm system has sounded? Well I would have told them they were being ridiculous or just ignore them completely, it certainly wouldn't have changed my behaviour. 

I know this is not the right response and I know that if I am serious about taking control of this illness I need to have systems in place including what I should do when I get this invaluable heads up from those around me. But like the threat of rain on a beautiful day it is really hard to be told something bad is going to happen when everything feels so perfect. Imagine you are having a brilliant day and everything is going well, you feel great. Then someone tells you that actually you are ill. Would you believe them? 

To Challenge or not to Challenge?

So I didn't make it through Run Every Day January but I thought I may try a new challenge, Write Every Day February... or WED FEB for short. There are good and bad things about setting up challenges for everyone but particularly if you have a mental health problem.

I am a huge fan of medication but I know they are not for everyone but for me getting diagnosed and the right drugs was a huge step towards me being able to manage my illness. However as well as this medical help I also know that lifestyle is a really important factor in staying well. For me this is exercise, eating well, watching what I drink, trying to get enough sleep, all the usual wellbeing tips really.

A lot of the popular challenges (especially at this time of year!) fit into this. Dry January, Veganuary, Running Streak, (and R.E.D Jan in particular). I'm sure we will see mindfulness based challenges crop up before long. On the plus side these challenges can place you into a like-minded supportive community, often give you another reason in the form of fundraising to encourage you and are usually a measured period of time. We all know that healthy habits can be formed in about a month (although this 'fact' has been questioned by many).

I have read so many inspiring stories of people this month who have tried to beat their depression by forcing themselves out of the door every day. For most of the month I smiled down at them fondly, thinking how lucky I was that I was just out enjoying the running without having to push myself too much Then of course my own depression hit like a tonne of bricks and while many probably thought that the best thing for me to do was to do up my laces and at least run round the block I knew in myself that this was A) Physically impossible, I couldn't even get dressed. B) Actually the worst thing I could do when I needed to lie in my bed and just be kind to myself.

This reminded me of a brilliant blog written by a colleague who also has bipolar disorder, Laura. She too is an 'unlikely' runner like me who sees the benefits of running for mental health but knows the pitfalls of guilt and self loathing when training is disrupted by illness. Laura's blog 

I have run a number of races, including the London Marathon and have raised thousands for charity in that time. But what do I find myself focussing on? The races I never ran... specifically The New York Marathon that unfortunately was due to be run just 2 months after my sister died. I did still go to New York but found myself feeling like a traitor any time I saw someone in running gear. Or the Great North Run last year, a race I love and have done many times, only I had a period of poor mental health in the summer that meant my training plan was totally thrown out the window and I am clever enough to know not to take on a race when I haven't put the hours in.

A challenge I did complete and one that will always stay with me was to trek in Peru for Mind around 12 years ago. Although it wasn't the 'fitness benefits' the sponsorship or even the amazing site of Machu Pitchu that made an impact, it was actually my first experience of being amongst people with mental health problems as a peer rather than a worker and what a lovely feeling that was. Ironically my doctor had to sign off a medical form to say that I was well enough to take part, called me to say that there was a problem. He told me he couldn't sign it as I had ticked the form saying that I didn't have a mental health problem, so deep was my self- stigma. He had been treating me for around 4 years at that time. As he gently said to me if I couldn't admit that I had this issue to go on a trek to raise money for a mental health charity then there is no hope! This was a real breakthrough for me in the end and I was over the moon to get a job with the same charity around a decade later.

So why am I setting myself another challenge when it will only put added pressure on me when I am trying to get well. Firstly this is going to be a 'being kind to myself' challenge where it is only me judging and if I really can't face the computer then I promise I will not be hard on myself. Secondly I realise that I find writing quite therapeutic, I am pretty crap at telling people where I am at but for some reason writing it all down seems a lot easier. Thirdly it is the kind of challenge that I can do in my pyjamas, without having to talk to anyone and with Jeremy Kyle in the background. Lastly I am hoping it will break up the monotony of being unwell. Being ill is really boring...

If you want to join in, let me know and we can all start a WED FEB challenge together!

What goes up, must come down...

* This picture is posed by a model....

I washed my face today. OK, so I didn't actually wash it in any real sense but I got a wipe from the cupboard, put it on my face and even smeared a bit of moisturiser on. Not a big deal you may think but if you take into account that this was the first attempt at getting clean in 5 days and then compare this small act to the fact that I ran an average of 21 miles per week in January and spent a day doing numerous local, national and even international radio interviews only a couple of weeks ago you may question why a face wipe has such importance?

I spend my working days trying to dispel myths around mental illness and yet I realised that people around me don't really know what my own condition is like to live with. Stephen Fry really should be given a medal towards services to bipolar disorder (or manic depression as he called it) as he really bought the condition out in the open and made it 'normal' or 'acceptable' in ways it hadn't been seen before. As for subsequent role models, I love Carrie Mattheson and actually find her portrayal in Homeland very accurate at times, even poor Kerry Katona or whatever her name is, slurring her way through THAT interview rang true to me, medication can make you feel and act in that way (of course if you add a few shots of vodka to the mix then that definitely doesn't help with elocution...) However I still think if people were asked they would say that someone with bipolar is someone who swings wildly, running around talking to themselves before they are sectioned and sedated and then spend days staring at a wall.

Of course that is the reality for many, that is the thing about mental illness. There is a total spectrum for most. However the surprise may be that for most people, those around them may have no idea that they are ill, I don't run around howling at the moon most of the time.

For me I generally experience what is called hypomania. When I explain it to you I am guessing that most of you will want a piece of the action and someone I spoke to on a forum this week said that if they could make it in pill form and know that there would be no negative side effects then they would take it everyday (and be a billionaire very quickly). The world is just a rosier place. For me it is mainly my ideas and supposed creativity. I have a million brilliant ideas, some of which I may try and act on. It is like having really achievable daydreams constantly on loop. I can take on the world, both in my private life and at work. Physically I need much less sleep and can exercise more. This is the time when I organise holidays, nights out, races really anything that requires energy. This is also time when I can write freely, sketching out ideas for freelance articles, starting new books and even thinking up new websites and blogs. I even spend a lot of my time singing out loud and going social media mad. It really is fun.

However now I know myself and my illness, this amazing little world always ends up tinged with sadness as I know as soon as I realise I am in this stage it means that the end is nigh... Insight is a bitch. Not that I will do anything about it at that stage, oh no. In fact the opposite. Another night out, 2 more gym classes squeezed into my day. If you have seen Elf I would liken it very much to the magic flying powder that is used in the lollies. The people 'in the know' soon realise that this powder is dangerous but surely the lovely floaty experience for these children (oh and money/ world domination that it brings) is worth the fall. And there will ALWAYS BE A FALL.

The fall this time has been very brutal and yet I knew it was coming, just like hurtling forwards in a car crash. I crashed spectacularly and spent 3 days in  bed solidly, unable to do anything apart from cry, attempt to sleep and stare at the shit that passes for daytime TV these days. Some people may think that a few days in bed when there is nothing physically 'wrong' must be quite nice and indeed a lot of people around me thought that it was good I was having a 'good rest'. I can assure you thought that there is nothing restful in this state. Firstly it is not just feeling sad. Throw in feelings of helplessness, paranoia, guilt, self-loathing and anxiety. Even my good old friend the panic attack decided to visit for a couple of days. And physically, just climbing the stairs to visit the bathroom could take up up my strength for the entire morning, coupled with actual pain all over my body. Sleep was a blessing and yet a curse as it was bound to be very broken and filled with lurid nightmares and yet it did provide a break from the everyday horror.

I think for me this time round the guilt has actually been the worst feeling. Being mentally ill can feel very self-indulgent, even though there really is nothing you can do to stop it. I hope that everyone knows by now that the worst thing you can ever do to someone with a mental illness is to tell them to 'buck up' or 'pull themselves together' as though this is something that is chosen. It's not, it is an illness like any other and you therefore have about as much control over it as you have saying; 'I am not going to get flu this year.' Of course there are ways of trying to keep yourself well, just as there are ways of trying to prevent other illnesses but these attempts at resilience don't always work.

I have guilt that I am a shit mother when I am unwell, the amazing 'fun' mum one day and then the wreck that can't even smile at my child the next, let alone look after any of her needs. Guilt that other people have so much crap to deal with and don't end up like me. I have friends and family who are grappling with cancer and immense grief at the moment, so what have I got to feel so upset about with my lovely house, incredible job and amazing family? I also have the added guilt of failure this time round as I have been taking part in a challenge to run everyday in January to raise money for Mind. I did manage it and was actually thriving until I got ill and had raised over £500. So of course I feel now that I have failed both the brilliant people who sponsored me and the lovely, supportive online community of runners. In fact sitting here looking out of my window at the joggers going past actually makes me want to throw my computer at them in my current mood!

Still there is a chink at the end of this tunnel. I woke up today feeling as though I may even leave the house today. The fact that I am writing this and even beginning to chat to people via my various methods mean that the worst is definitely over. I know that I am one of the lucky ones. My friends and family are incredibly supportive. I work in a job where kindness and understanding towards mental illness is just part of the culture, I have professional care from the local community mental health team which meant I was able to see a psychiatrist yesterday without having to wait months, which is the norm for many not in the system. I have also started to take part in forums to find out 'Is it just me?' and of course the answer most of the time is a resounding NO. I will hopefully be able to return to work next week and may even venture out for a jog. My life generally is just very ordinary and my mental illness is just a very small part of it. I just want to maybe explain to people why I may seem a bit 'odd' at times and of course to try and show the realities of a condition like bipolar disorder where in my case it is rarely big or scary. Just a little bit nicer and then a lot more horrible than 'normal' life.

I am the poster girl!

Ruby Wax has almost made a career out of mental health. She has done tours and even television shows all about her own experiences of depression, the treatment she has had and her subsequent studies into mindfulness. She also calls herself the original 'poster girl' for mental health. She likes to regale the time she stepped onto the underground and was surrounded by posters telling the world that she has a mental health problem.

    Now I am no-where near as funny as Ruby but today I do find myself in a similar situation albeit in the digital world. Today is the second annual brilliant Time to Talk day where the campaign I work for, Time to Change, is urging everyone around the country to have a conversation about mental health. The idea is the more we talk about something the less it is stigmatised and the happier those of us with mental health problems can be about sharing our experiences.
    I had taken part in a photo a couple of weeks ago telling the world three things about me. Namely that I am a mum, I like to meditate and that I live with bi-polar. I knew the picture would be used for this big day but had no idea it would be used predominantly on Facebook. It was quite a shock to see my face staring back at me this morning!
    I needn't have worried though I have had such lovely reactions from friends and acquaintances. Lots of emails, texts and Facebook messages of support. I hope that my openness will also encourage others to 'out' themselves. I'm sure there are still people who may not want to employ me or who quietly defriend me as a result of my revelation, after all that is why there is still such a need for Time to Change but on the whole times are a changing!

The great creation debate

I have just been listening to a phone in show about the commons vote later to decide whether to allow the creation of babies using DNA from three people. A lot of the people calling in or emailing seemed to have bypassed the issue at hand and were calling on a ban for IVF altogether. Arguments for this seemed to be centred on 'natural selection' or that there are too many unwanted children in this world, people who can't have babies should adopt rather than trying to create their own.
  I have to admit that this was partly my opinion before I became unable to have children myself. I am not in the least bit religious but thought that infertility happened 'for a reason' and that you shouldn't mess around with what nature intended. Even when my own infertility started to become an issue, I still thought I would adopt rather that go through such an unnatural process.
  Of course this opinion changed and when I look at my beautiful daughter who was conceived not on a romantic break but in a lab, it is hard to see anything but an amazing child, with how she was created being completely irrelevant. Of course we will tell her one day when she is old enough to understand and I hope that it makes her feel very special that she was wanted to much rather than strange in any way. 
  Which brings me to my conclusion that really it is all about personal choice and that if things are possible such as ensuring that children are not born with incurable diseases then surely this should be made available and it should be up to individuals to make that choice. I for one am over the moon that the issue has moved on so far that IVF is almost without stigma.  

To medicate or not...

I am a huge fan of modern medicine. Sure I have dipped my toes into the world of alternative medicine, acupuncture to help me get pregnant, homoeopathic medicine for my baby's cough and reiki and reflexology just to keep me (almost!) sane. But when I go to the doctor I generally comply with whatever they tell me to do. But what if the medicine is worse than the cure?
 
   So why do we take drugs at all? A colleague put it brilliantly recently at an event we were running for a long running medical drama in Birmingham. He was asked if he took medication for his bipolar (there was a lot of bipolar in that room as far as I know 3 out of 4 of us running the workshop). He replied that he took his pills but in the same way that he kept fit and healthy or undertook talking therapies. In other words he took a very holistic approach to his self care.

    This is the same for me. I know that regular running, a healthy diet and someone listening to me are all factors in keeping well but I also know that medication plays a huge part. This is something I learned to my cost last year. I was feeling really well and had been stable for a couple of years. The things that were bothering me were actually the side effects of the mood stabilisers I take. A foggy brain in the morning, a lack of creativity, ridiculous weight gain. I began to question if these downsides were worth it so I did what every doctor will warn you not to do. I came off them...

     The result was a period of a few weeks where I was ill, unable to leave the house and suicidal. Luckily I got support in the form of home visits, I was moved to a higher dose of my meds and with the help of friends and family things began to slowly get better. But with my 'well' self the issues with the medication still stood.

      So I am now on the cusp of starting a new medication. I was told by my psychiatrist to go away and read about it before I make any decisions. The list of side affects is of course many lines long but it may address the issues I have. How do I feel about replacing one set of very powerful drugs with another? Not great, I read with horror about the likelihood of developing terrible physical illnesses, indeed some people with severe mental illnesses can expect to live a full ten years less than everyone else. But the alternative is just too hard to even contemplate. Unfortunately I need pharmaceutical help with my illness, just like my colleague although I guess I need to work on the rest of that wellbeing a little more and one day you never know I will be able to say goodbye to that prescription pad for good.