Tag Archives: Mental health

I swear it isn’t true…

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For nearly three years I’ve written a blog about running and mental health, and in particularly the impact of exercise on mental health, and vice versa. I’ve gone from a non-runner seeing everyone else do it, to a seasoned marathon runner, who alas is still beaten by the unprepared drunk smoker. I’ve raced alongside men and women of every height, shape, size and disability and have had every sense of ego beaten out of me. More importantly, I hope my blogs have opened up a discussion about mental health, which still leaves millions suffering in silence due to the stigma attached, and the lack of government support for what is a huge problem in the UK and globally. Through running, sales and various other events online and offline, I’ve managed to raise around £5000 for Mind and it is without doubt the best thing I’ve done, except perhaps for inventing the Snickers bagel.

However, I feel the need to apologise. I’ve written in depth of my own story, usually trying to use humour to keep people reading, thinking and supporting the cause. I’ve admitted my own battles with depression which have taken over much of my life, and which I’m aware will always be there. Sometimes it’s the only way I see my life ending, but then something comes along and gives you hope. It does always get better, we all hang on to that fact, but battling year after year can take its toll on anyone. All any of us can do is keep talking, listening, trying to understand and realising that whatever problem someone has, physical, mental or just a difficult time in life, we’re all here together.

So why am I apologising? Well, I’ve held back a lot in what I’ve wanted to write about. I don’t just suffer from depression although it’s been a huge part of my life. I find that easier to write about because it impacts more people and helps more people relate, Mind is big enough charity to make real positive change and needs our help. I wanted to fight stigma, and it remains slightly cool because Stephen Fry has it. I’m half joking.

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Yet I have Tourette Syndrome. I hate the words. The sound of them, the sight of them, even grammatically, is it Tourette’s Syndrome? I suggest so given it’s named after someone called Tourette. Why couldn’t he have been called Gilles de la Awesome. I’ve got awesome syndrome. Or as the public seem to know it, hilarious swearing disease. The butt of many jokes in TV and films, always the same with someone swearing inappropriately at a person or quiet location. I’m yet to see a genuinely funny Tourette’s joke. Perhaps that’s my main problem with it. I’m more offended as a comedy fanboy than I am as a Tourette’s sufferer. I once mocked someone drunkenly walking into a lamppost and several seconds later twitched myself into the same lamppost and fell over. Tourettic retribution. The public perception has meant many people would have no idea I have it, some might not believe me now, some haven’t in the past. Sometimes I’ll be controlling it very well, maybe for months, but it is very much still there. More of you will of course be thinking, yeah, we knew all that you twitchy freak. And I have no problem with that.

The swearing or foot-in-mouth nature of Tourette’s is so ingrained is society that even the ever unpopular David Cameron could get away with using Tourette’s as a joke about someone talking too much. This attracted a couple of news stories that promptly disappeared with some even warming to him more for the joke. Imagine how long the story would have run if he’d make a joke about more physical disability. I’ve lost count of the number of comedians doing jokes about Tourette’s always with the same emphasis. Ricky Gervais caused controversy over the use of the word mong causing Scope to complain and other comedians such as Richard Herring to condemn him. Yet when Gervais found Tourette’s funny, there was no hint of a backlash. My main problem with his tweet about Tourette’s and laughing at THIS tshirt, is that unfortunately, some small part of me does find it mildly amusing.  But at no point have I denied being childish.

Somehow, there are two volumes of a book called ‘Pets with Tourette’s’, indicating the first collection of animal drawings swearing was sufficiently popular. I can’t claim to have read both books, so perhaps I am the ignorant one this time and it truly is the elegant prose you would expect from The Daily Sport’s ‘most hilarious book on the planet’. That should come as no surprise, given author Mark Leigh claims to have worked with luminaries including Rolf Harris AND Roy Chubby Brown.

If on the other hand you find this hilarious, you are a dick.

If on the other hand you find this hilarious, you are a dick.

Gervais once said racist jokes aren’t funny because they aren’t true, and he is absolutely correct. So why are Tourette’s jokes alright when they show nothing but ignorance? I’ve lost count of the number of references to Tourette’s in TV and film just using it as a by-word for saying something unfortunate or offensive. Even the sympathetic documentaries on the subject focus on coprolalia cases. Having worked for five years as a TV analyst, trust me, it’s ratings before education, research and equality. This also explains the quantity of time the BBC give Nigel Farage.

The act of involuntarily shouting words and swearing is known as coprolalia and around 10% of Tourette’s sufferers endure it. So, to all the comedians out there, 90% do not, including me. My biggest complaint is your inability to write vaguely original authentic well-researched comedy.  We can complicate it further by talking about echolalia, where you repeat words and noises of others, or indeed yourself. Copropraxia where you make involuntary obscene gestures, or the range of associated sleep disorders, anxiety, depressive conditions and mental health problems. Anyone wanting a more detailed picture of the illness and all its intricacies should visit http://www.tourettes-actionuk.org. All I can offer you is my own experience.

I recall it beginning around age 9 and making noises for no apparent reason. I wasn’t seeking attention as people assumed at the time, and why wouldn’t they? I was hyperactive, loud, struggled to focus and struggled to sleep. It could describe a lot of children without Tourette’s if we’re honest and I don’t believe we need to label everything. The noises didn’t disappear but were overtaken by movements, primarily involving my neck and eyes, which didn’t go unnoticed at school. Again, while hurtful I think my main disappointment was the lack of originality in the insults. Look at the kid nodding all the time, ha, noddy. To the best of my knowledge, my school produced no comedians.

In many cases it does subside with age, but I can’t say that has been the case for me, although it has definitely changed and evolved. There have been times when I’ve been more settled, in particular relationships or homes that I’ve found it more manageable. That’s not to say the condition has diminished, just that my capacity for suppressing it and coping is markedly higher. This also works vice versa and at 33, single and without somewhere I would call home, it remains challenging. Form an orderly queue ladies.

It has been with me so long and interweaved into the fabric of so many days I could write a book on it, but I’d like to try and keep this to a length that a few people have a chance of actually reading.

As an adult, I have experienced ‘tics’ (another word I hate, let’s go with twitches) in every part of my body imaginable. You can be looking at me, talking to me, yet see nothing. Beneath the surface there may be toes, ankles, calves, stomach muscles, fingers, arms all fighting to move, or me fighting back to constrain it. When successful, I find myself very low on energy, yet to ‘let it all out’ in my experience makes me feel far worse and exacerbates most the twitches. It’s not surprising such an experience can lead to severe depression, but that’s something I think might be there regardless, although it’s impossible to know for sure.

There are endless contradictions about what makes it better or worse. I have tried all sorts of diets, medications, therapies or just avoiding some situations with mixed results. Sometimes I can cope with crowds, cope with pressured situations and show no nerves with public speaking, interviews and so on. Other times I can’t walk down the street without going half blind. Generally, I don’t like really crowded places, yet I live in London and worked for years by Oxford Street. Sometimes you just have to cope with it regardless. While I can be shy sometimes, overall having been stared at in the street and abused fairly regularly there’s not much that fazes me anymore. There’s nothing quite like accidentally making inappropriate facial gestures in London. It has very different consequences if its staring at angry drunk people on the tube, or the friendly folk of Old Compton Street.

Try not to blink for as long as possible. You will feel a strong urge that technically, you can control for some time. Now try it again while thinking about blinking, or reading the word ‘blink’ on the piece of paper. That urge will give you an insight into Tourette’s. Now imagine it’s not just blinking, but a dozen different urges, some contradictory, some more dominant and some just painful.

An interesting development of recent years has been certain twitches teaming up in coordinated attack. The eye movements will take place alongside neck movements, or throw in an arm twist or stomach clench that either gives me a hernia or makes people think I’m really enjoying the music in HMV. The toughest side of this is the impact on my breathing. It’s something I and most of us take for granted. Yet breathing twitches, often combined with all other twitches can be completely consuming, sometimes leading to panic attacks. Just having to think about your breathing, the rate and depth of it makes it somewhat challenging to go about the tasks of the day or enjoy any moment. It’s as if your subconscious is demanding a more leading role and there’s nothing you can do about it.

Someone recently told me they noticed some of the twitching on the very first date. Yet it still turned out to be the best first date I’d ever had, so there is hope when I can control it to any extent, and of course, people such as her who wouldn’t let it stop them giving someone a chance anyway. Because it isn’t me. It has shaped me, affected me, but every person on the planet has experiences that will do that. Perhaps I’ve become more of an observer, sitting back and thinking more, I’ve definitely been given more empathy with it and hate any form of discrimination. Yet I don’t judge people too harshly for mocking it, especially at school as I can’t say for sure I wouldn’t have been joining in had it been someone else. Although clearly I’d have come up with a better joke.

In case you hadn’t noticed, this blog has been about running, and mental health, but mainly running, and mental health. I started running for the physical and mental benefits as I’ve previously talked about. What I haven’t mentioned however, is the impact of Tourette’s on running, particularly in events. I never wanted this to become some excuse about my finish times, I have no ego about that having run against every age, shape and size of person imaginable. I imagine running could help with the condition for some people. Walking often does for me, although somewhat ironically and unfairly, depression is the best cure of the twitching. I’m yet to decide which is the short straw.

When I run I suffer a lot of neck twitching, while my eyes are often screwed up making vision somewhat, well…impaired, leading to anxiety and the impact of breathing. That is a normal training run. It says a lot about my planning and foresight that only when faced with 38,000 people in front of my at the start of the London Marathon did I think ‘this could be a problem’. Anyone would find it difficult having to navigate those crowds and it does impact your time, but for me it was a case of trying not to trip over anyone, trying not to send a sprawling arm into a face, the constant battle to keep my eyes open long enough to avoid collision. I would say in each event the Tourette’s has taken half my energy. I have no idea what that means in terms of my ability, and I don’t particularly care. All that’s important to me is that I kept doing it, and always finished whatever hell I was in. During one training run I screwed my eyes up long enough to sprint into the back of a police van. Unfortunately due to popular culture, these days when you say ‘sorry I have Tourette’s’ it’s widely assumed you’re taking the piss.

While we’re on the theme of sports and me making a tit of myself: football. I read an interesting piece by Tim Howard in the Guardian today describing his experience with Tourette’s which is well worth reading. Although as I’ve said, it’s such an individual condition I have no idea what he really goes through compared to me. That’s partly why this article by the BBC was a little annoying (does TS make him a better goalkeeper?) Well, no probably not. For a start, you’d need to study a huge number of Tourette’s suffering goalkeepers wouldn’t you. To the best of my knowledge, there is only one playing professional football. I find it far more likely that Tim Howard is actually just a ridiculously good goalkeeper, Tourette’s is just part of his story and what he’s dealt with.

Having spent a lot of time as a goalkeeper, I have great respect for him. I struggle with fast movement so the notion of sport improving concentration and reducing twitches certainly isn’t true in my case. Given that, it probably says something about me that I enjoy it anyway. Do I have better reactions because I’m used to so many sudden violent movements? I doubt it. All I’ve found is impaired vision, anxiety and blind panic when I play with people I don’t know. This once culminated in having my eyes closed as a slow long shot rolled past my food. It still amuses me to recall the cries of ‘shoot, he’s rubbish’, rather than ‘shoot, he’s got Tourette’s!’

I would love to play more sport but quite simply the pace and movement makes it very difficult, my ability will never be what it could and I don’t like the idea of letting down teammates. That is partly why running appealed, just focusing on my own project, not letting anyone down, improving my times and being proud of what I could achieve. Whatever limits you, and it’s different for us all, there will always be something else you can turn your attention to and thrive.

I have found in the past that when I tell someone about it, my condition becomes worse around them. This isn’t their fault, it’s just an unfortunate aspect of the illness. For many other people thankfully they find sharing is a huge help, and today at age 33 I have reached a point where I no longer care what anyone thinks, and want to try and at least educate a few people on the condition. What it will mean for the future, we shall see.

Work has been a major source of struggle. Despite gaining a degree and masters I have found focus very difficult, both mentally and physically. I have a constant feeling of not having done quite as well as I should have, but who is to say I wouldn’t have that without Tourette’s and depression. In the big world of employment I found sitting still performing unchallenging tasks repetitively to be the biggest obstacle. Sheer frustration met with cramped social anxiety have produced quite the twitchy cocktail…although at no point in my career have I been anywhere near the weirdest person in the office! Around the right people, performing work I care about, I have no doubts I would be fine and I’m not about to give up on my ambitions anytime soon.

An estimated 300,000 people in the UK suffer from Tourette’s, in its many forms. The emphasis of research looks towards children and behaviour at school, which I can understand. However, the assumption it alleviates with age can leave you feeling stranded and lone when it doesn’t. Many doctors have little information or focus on the depression, anxiety or OCD, offering antidepressants. Antidepressants which can of course, increase anxiety and twitching. Awesome. There are support groups and forums of course, but again I’ve found them dominated by worried parents wanting more information. Perhaps it’s such a diverse condition affecting so relatively few that there aren’t many to share stories with, but ultimately it doesn’t matter, because I can share my story with you. A story that basically boils down to one person’s perspective on life, and we all have one to share. Given the complexity of the condition I don’t have any black and white advice for parents, other than patience, not attributing everything to the condition and never doubting that there’s a real person with well-informed ideas in there. Well, sometimes, of course many of us can still be morons regardless of medical history. So it goes.

Too often I have been left feeling unwell, out of energy and having to cancel things, letting down my friends and probably losing a few along the way. I’m a constant contradiction having too much energy, not enough, being overconfident, then terrified and anxious. I can be everything, and yet all too often nothing. I suffer a lot of neck pain and wonder what the future holds both physically and mentally. Yet every year whatever is thrown at me I feel more capable of dealing with it. These blogs have helped me understand the many aspects of depression and I hope increasing numbers of people are talking about it and seeking help. Now, although not such a severe problem across the UK, I hope we can reduce discrimination and at least spread a little education on another subject.

If you would like more information on Tourette’s Syndrome, how to get a diagnosis, support groups and treatments, please visit Tourettes Action or find them on Twitter @TourettesAction

There you go then, something to mull over with your…mulled wine. Merry Christmas and a very happy 2015 to everyone who has continued to read this and support the fundraising, and generally the work of Mind, Time to Change and Tourettes Action UK. You can donate to Tourette’s Action UK via the below link.

http://www.virginmoneygiving.com/adrianreynolds

Sincerely, thank you.
Adrian

Twitter: @adereynolds

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Filed under Discrimination, Mental health, Misconception, Tourettes

Week 1 – Late entrant

Hello and welcome to my marathon blog, which like my entry is a bit late.  I’d just about given up on getting a marathon place for this year, the deadline for waiting list places was February 7th and I had a place confirmed that day.  Despite the late notice and prospect of raising £1650 I knew I’d regret turning it down so that wasn’t really an option.  Plus I thought the stress and anxiety of raising that amount for a mental health charity would be pleasingly ironic.  Thankfully I’d kept up with training over the winter to some extent, on the off chance I did end up with a place.  That said, I now have a lot of work to do, trying to increase my distance every weekend and run 3 or 4 times during the week.

Last year was the first time I watched the London marathon with a real interest in running, having only taken part in my first event 7 months earlier.  I still had no idea if I could ever enter myself but I appreciated how far the distance is having run just a quarter of it.  I remember going for a run that evening in London and seeing people of all ages still strolling around with their medals looking exhausted.  I’m pretty sure a few people thought I was just a really late finisher…there may have even been a few cheers.

As stated on my fundraising page, I’m very happy to be raising money for Mind throughout this marathon campaign.  The funds are vital, providing support and information to thousands of people each year.  More information on where the money goes and the work Mind do can be found on their website.  Mind also helps run the Time to Change campaign that helps promote awareness of mental health problems.  This is partly why supporting a mental health charity is so important.  The increased awareness is just as important as the funds and too often people are left afraid to discuss their mental health issues.  While many people are very supportive, others fail to understand illnesses and conditions they can’t see, or suspicious when people are off work for mental health reasons.

Discrimination only serves to exacerbate the problem, make discussing the issue more difficult and ultimately leave people feeling isolated and desperate.  With increased understanding and support these people can make as much of a contribution to the world as anyone.  In fact, if ignorance is bliss then it’s the more intelligent and useful people that are suffering.  Wonderful people like you, who want to donate lots of money!

There remains a reluctance to talk about mental health problems.  ‘I don’t want to get tarred with mad brush’, to quote Alan Partridge.  Although Alan does find the courage to admit ‘‘I have mental health problems.  I won’t go into the details, but I drove to Dundee in bare feet after gorging on Toblerone and purchasing the rights to K-9, the robot dog from Dr Who’.  So help raise awareness, help Alan and the thousands of people who suffer from (albeit less hilarious) mental health problems every day.  For a start you might well question the mental health of anyone paying to run 26.2 miles.

Depression can be like a prison, and the lower you get the longer you have to stay.  It’s all too easy to pass judgment on someone else’s inner turmoil from a distance, to dismiss it, to rationalize it.  It’s difficult for some people to comprehend and you’re lucky in a way if you can’t, however the important part is at least to try, to ask and to listen.  Mental illness doesn’t prevent someone from having a valid opinion, and in my experience it’s always best to argue the point rather than the person or condition.  Mental health problems don’t negate intelligence, in fact often the opposite.

Given my career status the marathon is providing a great challenge at an important time, and with the charity fundraising it’s a good chance to feel vaguely useful again.  The lack of permanent job is doubling annoying in that they would have probably matched my donations and made the fundraising a hell of a lot easier!  Still, it’ll mean more this way…right?  Who needs Informa’s money?  Although if anyone from Informa is reading, I would very much like your money.  I have to say it’s easier to head out running when all that awaits you at home is endless job applications.  If there’s an urgent one to get done it can keep you running for hours, the same way everything on TV became so watchable when you had homework to do.  ‘I can’t write a geography essay now, a Quantum Leap repeat is on!’.

The mental side of running is often overlooked but it’s very important.  Maybe some people can block out their thoughts while running, but for me it’s a time when I think the most.  I often write in my head, including some of this blog, or stories, memories, plans, all sorts of random thoughts.  The difficult mental side comes when you’re not feeling positive, when a short distance you’ve run hundreds of times seems impossible.  I’ve found the first 5 or 10 minutes running feel more difficult than the second hour on occasion.  You can push through it, almost every time it’s a mental problem rather than physical one.  In my experience if you start thinking ‘I’ll stop soon’, you will.  Pretty much the opposite rule to eating cake.

Nearly everyone’s physical limits exceed their mental limits, that’s why we surprise ourselves so often.  A large part of training for various events has been steadily convincing myself I can run certain distances, or certain speeds.  I’m not about to sign up for an ultra-marathon or anything but if and when I complete 26.2 miles, I won’t be about to stop attempting more (don’t worry you don’t have to sponsor me again….for a while anyway).

I definitely came late to running.  I remember not so long ago being able to run for about 5 minutes at most.  I assumed I couldn’t improve that really, that running wasn’t for me and I was naturally unfit.  I saw so many people taking part in running events (all these annoying sponsorship requests right?) and didn’t think I could do it.  Then in 2009 I decided to enter a 10k event in London, giving myself plenty of training time.  I just wanted to see if I could do it, and was surprised at how quickly training helped me improve.  The distances seem tiny now, but just reaching 5k was a big step.  It’s easy to mock other people’s times/distances, but it all depends on the individual.  I’m sure a 3-hour marathon is rubbish for some runners, yet impossible for me.  Likewise achieving the first 5k or 10k is brilliant whatever your age or situation.

I hadn’t completed 10k in training before the race came, but I finished in 48 minutes.  More than merely the achievement of it, I enjoyed the atmosphere on the day and just wanted to keep running, like a less interesting but equally clever Forrest Gump.  Several more 5ks and 10ks came although last summer I suffered my first injury, largely due to not warming up and down properly.  I missed a half-marathon and had to stop running altogether for a couple of months, which I found quite difficult.  Running has given me more confidence, provided a welcome challenge, allowed me to think more clearly, feel more positive and sleep better.  Beyond the obvious physical benefits, there’s a comfort in knowing you’re doing all you can for your health and that has a knock-on effect in your mind.

I decided to take part in the Great South Run with just a couple of weeks training.  I didn’t push it that hard, didn’t finish that quickly, but it was still the best reason I can think of to spend a day in Portsmouth.  Perhaps I’ll run it faster in a Saints shirt this year, assuming there are any Pompey fans left to chase me.

Overall the injury made my knee stronger, and focusing on warming up and down properly has really helped.  I hear lots of people say running is bad for knees, joints and so on, but that’s only true if you’re not doing it properly, not giving yourself time to recover, or using the wrong shoes.  According to the ever-unreliable Nike+ I’ve run over 1200 miles in the last couple of years, and my legs have never felt stronger.  The warm up and warm down videos on this website really helped me if anyone is having knee problems.

I hadn’t run for a week when I heard I had a marathon place, so that was a cracking start.  Luckily my first light jog the day after hearing went smoothly, I managed to put the giant neon sign in my mind flashing ’26.2 miles’.  I’d planned to do one long run each weekend, increasing steadily until hopefully reaching 19-20 miles 3 weeks before the marathon.  The first Sunday I managed 15 miles somehow, partly the motivation of just seeing how far I could go, and more likely because I got lost.  Very lost.  I was sure I was running in the opposite direction to Winchester….until I hit Winchester.  Then on the way back taking a short cut through Shawford I had to sprint away from these things (see above, the benefits of running with an iPhone).  Quite good training although I’d rather not miss the marathon due to an angry bull attack.

Mind provided a ‘Guess my marathon time’ sheet as part of the fundraising pack.  It appears to start at 2 hours 45 minutes.  While I wouldn’t want to turn down sponsorship bets, if I finish in less than 4 hours it might be worth checking my Oyster card history.  Or perhaps I’ve broken the rules and worn Heelys for the day, holding on to a faster runner like Marty McFly on the back of a car.  Actually I can’t find anything against Heelys in the rules.  We’ll call that plan B.

I’ve never run this far and won’t be reaching near the complete distance in training, so this is very much just about finishing in one piece.  Obviously I’d be disappointed to crawl over the finish line in the dark but if that’s what I have to do to finish then so be it.  I suppose my main aim is to keep running the whole time and in the back of my mind I suppose 4 hours 30 minutes is a rough target.  I’m happy to accept any challenges though if there’s a financial incentive (for charity obviously!).

I received an anonymous donation within minutes of launching my sponsorship page and that was really appreciated.  The first week went well considering all I’d done is post a link to the page.  I hadn’t really got far with many other fundraising ideas with more time spent on training plans and registering for the marathon.  Any ideas for fundraising are still very welcome, if you know any businesses that can help, or can think of any events.  I’ll be continuing to raise money for a few months after the marathon so there’s no rush for donations, although I’d love to go into the race having raised as much as possible and knowing I have your support.  Thanks very much and I promise subsequent weeks on this blog will be considerably shorter!

Adrian

uk.virginmoneygiving.com/adrianreynolds

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