Thursday 4 February 2016

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!







Tuesday 2 February 2016

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? 








Monday 1 February 2016

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!