Food for Thought

Hello you lovely lot!

So I know I have been incredibly quiet for almost a year now.

I have already shared with those of you who follow my page on twitter that I had been unwell again. I’m mostly restored back to myself now and have been for a few months, but it has taken a lot to build up the courage to actually write this blog and share my story. I’ve had several attempts to try and write something and given up halfway through so even as I write this I don’t know as it will be published or not. But here goes...

Not a Food Fan

So what you should know is that I’ve always been a fussy eater and funny about my food. That’s just part of the quirks of me being me. I have a phobia of cheese which is just easier to joke about and laugh it off. I don’t eat normal things like tomatoes, onions etc etc. God bless my mum for finding things I do eat!

The worst and, to me, the most personal question anyone could ever ask me (which I get ALL the time as I’m so fussy) is ‘What do you like to eat?’. Because quite frankly…I don’t. I eat to live that is all. I wish I could enjoy eating but I just don’t.

I’ve also always felt uncomfortable about eating in front of people that aren’t my immediate family. I would always be there covering my mouth as I’m chewing or trying to take bites when people aren’t looking. I also pick like a pigeon, not a clue why, something in my brain just says one piece of chicken is fine to eat, the other bit just isn’t. I still don’t know why that is and I can't explain it.

You also need to know that I am naturally very thin. Always have been. I can eat junk food everyday and nothing else and I wouldn’t put on a single bit of weight. When I was in primary school I was called anorexic, I was told I needed to eat something…but it was just something I couldn’t help. Yes, people call me lucky and sure, it’s great that I don’t have to worry about putting on weight, but it can also make things very dangerous as I was about to find out.

Moving to London 

Despite the food situation, I’ve always eaten 3 meals a day. Never questioned that, ever.

Then I moved out of home back in March and moved in to a shared house in London. Suddenly, I was having to make my own meals and pay for my own food and nobody was observing what I was eating. Things started off fine, I’ve always been an awful cook but I made things work. I would continue to eat three meals a day. Then I got about a month down the line and I got paid for the first time in my new job. I only just had enough to pay my rent with only about £50 left over to live on for the month for travel, food, and anything else.Now, my parents are always very supportive. If I say I’m struggling financially my mum will help me out. I know I will never be all alone and struggling and my parents will always stick by my side and I am so incredibly lucky to have that constant support system.

However…the point of me moving out was to be independent…to live off of my own money and not go running back to mummy when things went wrong. So I started trying to cheat. I figured if I could live off two meals a day rather than three, it would save a lot of money.
It worked for a while then it became obsessive. I was convincing myself I was saving money and learning to ‘live in London’...that it was just part of the experience...but I was actually spiralling into a very dangerous habit.

Discovering the Scales

Then I discovered some scales in the bathroom in the shared house I live in…and just out of curiosity stepped on them one day. Then that curiosity turned into another obsession. Without going into too much detail, the scales became my best friend and the link between weight and what I could eat was huge. Weirdly, none of this was ever about losing weight. I know I’m thin and probably always will be. I’m happy with that and for some stupid reason it never crossed my mind that I would lose weight so noticeably. Though it wasn’t just the losing weight that became obvious to people. My skin was awful, I looked horribly pale…I even had unexplained bruises all over my body which was quite scary. All of my clothes were completely hanging off me…my mum took me clothes shopping and I can’t even imagine how she felt when she saw size 6 clothes hanging off me. I didn’t look good at all.

Alcohol

I’ve also always had depression but it hasn’t been too prominent for years. It's always been overshadowed by my anxiety problems (which strangely, seemed to vanish during this period). However, I had been taking anti depressants to keep my depression and my anxiety at bay for 5 years. Of course, with the lack of food, my mood also took a downward spiral. I started getting very depressed, and seriously lack motivation.
So it was about this time that I discovered the benefit of alcohol. Instead of eating dinner, I would drink a bottle of wine. It made me feel better, it made me forget and think that I was happy. For some reason, bearing in mind this whole thing started due to lack of money, money was no longer a concept to me and I was diving into my savings in order to buy alcohol and thinking nothing of it. I wasn’t eating anything at all at this point. Maybe a chocolate bar at some point in the day or a banana or something. But no meals. That pang and pain of hunger in my belly gave me some weird sort of sense of satisfaction.  I had no energy as I was so depressed and weak with lack of food that I couldn’t go to work. Thus making my money situation a million times worse.

Anyway, owing to the alcohol, I started doing very silly things. I would leave my house completely drunk at silly hours of the night and just walk around. Anything could have happened. One night, after a bottle of wine, I took quite a lot of ibuprofen…just to see what would happen. I didn’t want to die at all…I was just curious. Thankfully I came to my senses and made myself sick and that realisation of how utterly stupid that was was one of the key turning points for me. That and discovering several hidden empty bottles of wine under my bed that I was hiding from my housemate. A couple of people also started commenting on my weight, and I couldn't remember the last time I had eaten a meal.

Asking for help

I confided in one person that I trust. I told her everything and I was set up at a local doctors surgery pretty quick. I saw an incredible doctor, who took me very seriously. As soon as I walked in she told me I was very thin and weak looking and she knew before I said anything exactly what I was about to tell her. Of course she was very concerned when the alcohol and ibuprofen incident was mentioned and she referred me to a crisis team in a local hospital straight away. They called me that afternoon and assessed me.

The woman I spoke to on the phone was about to change everything. I don’t even remember her name…but I wish I did as she completely turned my life around. She must have got an idea of my personality very quickly, and worked out that I didn’t need someone to be nice to me, I needed someone to be blunt. She told me that what I was doing to myself was very stupid, that for someone who wanted to be an actor, I wasn’t showing the strength and resilience that I needed. She said that I sounded like a very intelligent girl and I could beat this if I get out of my head and back into my strong mind set that she knew was lying beneath the surface. She then gave me an option...I could either accept their help and have something done by them straight away (ie…a voluntary admission) OR, with their support if I needed it, I could take the responsibility upon myself, give myself a good talking to and get MYSELF out of this declining spiral. I chose to do it myself, and I am so glad I did. I know that not everyone would want to do that and it’s different for every single person, but for me, I think it helped my recovery to do it for myself.

Recovery

It wasn’t easy, but with the support of my doctors and amazing friends and family, I did. The alcohol was surprisingly easy to stop. I didn’t deny myself a drink everyday, I just had one glass or one spritzer. And then gradually I got myself off of that addiction. Nowadays I still like a glass of wine but it’s not a compulsion like it used to be. Thankfully it was a very short lived addiction and I think that’s why it was easy to stop.

The eating was more difficult but I made it. I still have a couple of problems there but I’m back up to a much healthier weight. Money is obviously still an issue (think it always will be for anyone who lives in London!!) and that does occasionally mean that I cheat and skip meals but nowhere near to the extent I did. If I get hungry I eat…that’s my rule now and it works. I’m still not looking like the healthiest person in the world, but right now, it’s winter and I can cover that by wearing baggy jumpers. However, I went out twice this week and instead of finding something that would usually hide my figure and my thinness, I decided to just go for it and wear what I want. I was paranoid of looking too skinny, but I did it and once I had gotten used to it, I totally forgot all about it and didn’t care, I became very comfortable in my own skin for the first time in a while.

I also recently became anti depressant free!! I had been on them non stop for 5 years. I was prepared to be on them for a lifetime…lots of people are and why the hell not? If it makes you better it makes you better. Just like if someone lacks insulin in their body...then you give them more of it... so if you lack serotonin in your brain then we should be given more of that right? But my pills made me tired, they made me irritable and I had been on them for so long I wasn’t sure what affect they were having anymore. So recently I stopped taking them (gradually, and under doctor supervision and recommendation…please don’t just stop)…and voila! For the current moment, I’m happy without them and don’t need them as I’m in a pretty good place. I have no doubt that I will go back on them again at some point, and who cares that’s no problem that’s me. But right now I don’t need them and that makes me very happy.

So the point of me sharing my story guys is not because I want people to feel sorry for me but because I don’t want people to feel alone. It’s horribly isolating when something like this happens, but you know what? It happens. And it may be incredibly cheesy but it’s so TOTALLY true that what doesn’t kill you makes you stronger. And we need people to speak out and open up about their experiences and EDUCATE people. Mental health illnesses are very real…and I wont stop until people are aware how real and how frightening and also how COMMON it is.

Anyways, that’s all from me, over and out!  

   

GUEST BLOG - Jonathan Ford - "Depression, Oil Trading and a Mind at War with Itself"

Hi guys -

I know I have been very quiet recently. I had a few personal issues going on with my own mental health and I needed to focus on getting myself better. I didn't feel that keeping up the blog was going to help with that, but in hindsight, I wish I had. I'm in a good place now, and feel almost ready to share the story of the last few months (but not quite...) so I felt now would be a good time to restart this blog.

THANK YOU to Jonathan Ford, for sending me his guest blog (admittedly quite a few weeks ago now) and starting off that motivation to restart this. At the same time I received Jonathan's email, I also received a message asking me to do a mental health podcast, then that weekend had a drunken chat with a kind random stranger who I told about this blog, who convinced me that what I was doing was a good thing. Many others have also tried to persuade me to take this up again since I last posted, so I think life is telling me something!! 

So, any newbies out there, here's how my blog works. If you want to share your story with mental health - no matter your walk of life, your experience or lack of with mental health, you can be anyone, everyone is welcome here - then get in touch with me! I post guest blogs from anyone and everyone, and want to give everyone a VOICE! You can chose to be anonymous, so please don't be put off as I will always ask you and give you this option. So please get in touch (and like me on facebook and follow me on twitter) -
Facebook - https://www.facebook.com/letstalkaboutmentalhealth 
Twitter - https://twitter.com/letstalkmhealth  

You'll be hearing from me very soon -
Suzy x

THIS WEEK'S GUEST BLOG FROM JONATHAN FORD, AUTHOR OF MEMOIR 'DEPRESSION, OIL TRADING AND A MIND AT WAR WITH ITSELF'.

JONATHAN:

"Since writing my candid, shocking and eye-opening memoir, "Depression, Oil Trading and a Mind at War with Itself", I have been asked several times to write a blog but until now have been unable to do so. Rather like the actual writing of my book, I believe I needed to break through a certain mental barrier in order to accomplish the task. For the writing of my book my soul had been laid bare and I felt I had nothing more to lose as I sought to tell my story as openly and honestly as possible, leaving little if anything unsaid, something I now regret a little. The writing of this blog required me to realize I had something more to say once I had had time to reflect upon the now year-old book and had gained some additional perspective on my life.

As the title suggests, I chronicle my seemingly life-long struggle with depression, as well as my long term career in the oil trading industry and how these two were related. The oil stories are informative, amusing and often shocking if not scandalous but for now I shall focus on my mental state and struggles.

As many people believe, depression appears to have several components and causes, broadly speaking, biological or chemical, childhood and then circumstances. In my book I attempt to address all of these factors in relation to my own situation. I discuss memorable moments in my childhood that I believe are relevant to my early mindset and how my parents shaped much of my character, for better or worse. Perhaps a chemical propensity to being depressed is also apparent from an early age. My parents undoubtedly loved me as any parents do but unfortunately each had significant issues of their own, as we all do. My dad was an alcoholic and my idealistic, if naive, mother was critical, negative, judgmental and focused on academic achievement above all else.
Arguably a career as an oil trader or speculative trader of any type would not suit anyone with my mental makeup of perfectionism, tendency towards self-flagelation and all-or-nothing thinking. My early years were beset with periods of self-loathing and depression but I estimated these to be no more than 20% of the time. I actually loved my career in those days and was able to manage my emotional ups and downs.

Now at the age of 27, half way through my life, all changed as I moved to the United States. Within a year my life was transformed beyond recognition as a series of poor decisions set me up to become married and begin a life in the United States.

I had not understood the massive cultural divide that exists across the Atlantic and I soon found myself in a difficult and flawed marriage immersed in a world of superficiality, materialism, sanctimoniousness, hypocrisy, manufactured joy and a homogeneous jingoism and narrow-mindedness fed by big-business and government alike. De Tocqueville's  "Tyranny of the Masses" was alive and well. I did not recognize my life or who I was. It felt as if I was playing a role in a movie for which I was in no way suited. I became extremely depressed and was prescribed anti-depressants which at first did help lift the cloud only to allow me to more clearly see the fact that I was now living a life I did not want. For the next 26 years I was constantly on medication, switching between one and another for better effect, but would estimate I was now depressed around 80% of the time. I was adept at hiding this from most people. In order not to hurt my wife I blamed the depression squarely on my work and not on my personal situation though this increased my internal burden and I even began to believe it myself.

As I struggled through many locational moves with a young family things became worse in my mind and in terms of circumstances. I essentially threw away my career only to watch in dismay as a betrayal and back-stabbing left me unable to regain my old job and my former colleagues make hundreds of millions of dollars.

After an inevitable and painful divorce I refound my feet and a semblance of my old career but once again a series of bad decisions and bad luck brought me despair and heartache.

I remarried, this time thinking I was deliberate and mindful and knew what I was doing but my wife had other ideas that she did not share with me and so began another difficult, tumultuous decade plus marriage that saw me again discard my career and ultimately face massive suicidal ideation as I eventually lost almost everything. Throughout these dark decades I saw no way out of my misery and was merely trying to survive and run down the clock.

Now clearly I made many poor, ill thought out decisions, often through weakness and indifference but also naïveté. In hindsight I realize one should never do what is clearly incongruent with one's character and desires, as I repeatedly and knowingly if reluctantly, did to great cost. Several times I acted out of a desire to avoid conflict while sacrificing my own well-being and over the decades this grew into an unbearable burden of sadness, regret, anger and even resentment. I was not aware until recently of the resentment but understandably and obviously it was there.

As I have stated I have been on medication for depression since 1992. Even though this has helped, when circumstances became so bad they swamped the positive medical effects and severe depression was unavoidable. I have no doubt that biology and upbringing contributed significantly to my propensity for depression but overall, for me, a series of devastating circumstantial life changes coupled with living a life I neither wanted nor recognized in a culture I disliked effectively condemned me to years of despair and almost an untimely demise. For a year after completing my book I was in total shock and barely able to function. I saw my life as completely over and only a desire to not inflict more pain on my four children kept me going though the significant life insurance policy I have was pulling me ever closer to the end. I seldom had the energy or desire to go out and do anything other than watch TV. I was unable to have my children stay over with me and I forced myself to take lunch to them almost every day at school just to see them.

I was fortunate to have a couple of good friends who stood by me during this time, while others distanced themselves from me perhaps not knowing what to do or say. 

Somehow, as 2017 dawned, I managed to put things a little more into perspective but it has not been easy. I still have 27 years of regret to contend with and I am triggered daily to fall back into thinking of the past. I am still plagued with suicidal ideation but do not intend to act on it though I am increasingly comfortable with the idea. I credit a large part of my tenuous recovery with my having met a wonderful lady here in the Dallas area, the last thing I would need or want, one might argue. However, this lady has renewed my faith in relationships and what is possible when two people are honest and caring. I fell victim, through my own fault, to the prevalence here of an obsessive love of money and youthful beauty that drives so much of this society. It appears many women desire money and control and will manipulate their way to their desired ends. I suspect there is a corresponding male side to this as well though I have not encountered it first hand. Clearly one has to chose one's life partner with a little more care and diligence than I did and I have found plenty of life lessons to impart to my four wonderful children."

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GUEST BLOG - Tina McGuff - Seconds to Snap

Hi guys -

Happy New Year!!!
Seems a little late to be saying that, but I realise I haven't posted since before Christmas.
Apologies!!

This week's guest blog is from Scottish author, Tina McGuff, who discusses her own experience with mental health.

Please get in touch if you'd like the opportunity to guest blog -
Facebook - https://www.facebook.com/letstalkaboutmentalhealth 
Twitter - https://twitter.com/letstalkmhealth  

Suzy x

Tina McGuff is a Scottish based author of Seconds To Snap – Critically acclaimed & bestselling memoir of anorexia and the recovery process. Now being screen written for movie options.

Since Tina  released her book Seconds To Snap the wave it has created has been immense. It’s also shown Tina that there is a huge need for mental health, mind maintenance and self-awareness not only to mitigate future pressures on the NHS – but also for families, relationships and friends to get through the illness as it effects everyone.

Hope this helps others and early intervention is key to any recovery so please speak out as soon as you can.

Why the world needs to see & hear this message …

This is going to be my first ever blog. I’m nervous….however since I released my book Seconds To Snap the wave it has created has been immense. It’s also shown me there is a huge need as I anticipated for mental health, mind maintenance and self-awareness not only to mitigate future pressures on the NHS – but also o n families, relationships and friends.

I suffered first hand with anorexia (a very complex psychological illness ) – which also came hand in hand with severe OCD, depression, high levels of anxiety, panic attacks, suicidal tendencies, intrusive thoughts, self hate, self-loathing, social isolation, insomnia, self-harming, lack of confidence, distrust as well as a massive terrifying episode of psychosis. There was not a moment back them when I expected to live let alone have a great and worthy life one day. However an incredible doctor gave me a tiny glimmer of hope to which I clung in the off chance it may be true.

Through huge amounts of intense inpatient treatment, medication and self-discovery I turned my whole life around to become a valuable member of society, a wife, mother and friend. I love my life and am truly grateful each day and thankful to all the people who saved it.

So when I wrote the book I wanted to help others come out of the shadow of fear and shame and to also offer them the same glimmer of hope that I had as it was all true. Also to thank the patients who were my family and friends, but also a huge acknowledgement to the staff and doctors who tolerated my crap each day to save me. I’m forever in their debt.

Everyone needs hope – love – stability – early intervention and especially knowing that if they did get sick there would be help available in their home town with the same urgency as any other emergency. There would be a bed. Especially so for your people. There is nothing more terrifying than a severe episode of mental illness – it must be a million times worse for child who can’t understand what’s going on. They need to be close to family each day for extra emotional support. It’s also very traumatic for the family when someone can’t access treatment or get a bed. And then the cycle of their own stress and anxiety starts.

I asked a parliament member recently how he would feel if he had a heart attack that day and went to the hospital and was told – sorry you need to come back in a few months as there are no beds, or doctors. How would he feel? As from my experience and everyone I’ve spoken to in the despair of mental illness you can’t afford to wait.

You can die – it can be terminal.

The brain is an organ and a very special one at that controlling everything about us. Neuroscientists are working hard each day to bring us more knowledge and insight into this incredible part of our body which contains such complexities like our personalities, thoughts, feelings and memories.

 It has to be triaged the same way as every other part of our body when it requires help and attention.

So at the end of the day it’s all down to money for resources – there is not enough to go around, we can’t treat everyone when there is need as there is not enough money.

If there is early intervention and insight with education regards mind health and everything associated with that – we can help stop the need for it in the long run. Thus less urgency for funds and less strain on the doctors, nurses and NHS.

I did an article recently as there was a child who had to wait 22 months for an appointment with CAMHS. UNACCEPTABLE!!! All due to lack of money as they had no doctors available for the appointments. The family as well as the child were hugely distressed.

Another awful story was a young girl I had been told about had tried to hang herself in January – the first appointment they had to give her was June!!! UNACCEPTABLE!!!!

Let’s get talks like mine into schools, workplaces, hospitals, universities across the globe.

Mind health, mental health, self-awareness, meditation, mindfulness, body confidence, resilience all need to be taught and spoken about on a daily basis to prevent the devastating impacts they are predicting on the NHS by 2020.

So in short this is why the world needs to see & hear this message!

It’s our society and I’m doing all I can to create change alongside some incredible people one day at a time.

Tina x

https://www.amazon.co.uk/Seconds-Snap-Explosive-Destroyed-Anorexia/dp/1784183822

 

GUEST BLOG - David Neuer - Identity

Hi guys -

This week's guest blog is from David Neuer, screenwriter based in Minnesota. Here he writes about identity in reference to mental health.

A very merry Christmas to all my readers!!
I hope 2017 is filled with joy and happiness for you all!

Again, please feel free to get in touch via Facebook or Twitter if you want to share your story
Facebook - https://www.facebook.com/letstalkaboutmentalhealth 
Twitter - https://twitter.com/letstalkmhealth  

Suzy  x


David Samuel Neuer is a military brat who has lived in all corners of the United States save Alaska and Hawaii. He currently resides in Minneapolis, Minnesota. After being diagnosed with bipolar type-II disorder in 2006, he experienced an identity crisis that he just now beginning to share. After dropping out in 2006 from University, he went on graduate with a bachelor's degree in screenwriting in 2014, and registered his first screenplay with the WGAW (Writer's Guild of America-West). He currently writes screenplays for the film festival circuit and has plans to attend graduate studies in the spring of 2017.

On Identity

Breathless beauty, I have found you. She sat across from me at a setting of dinner tables dressed in white like a wedding. The joke I had started with her was about a hypothetical memoir she will write, me making fun of her conflicting statements, her being witty. The title of her book was thus called The Paradox Within, a memoir to be written by her, accounting for the inner conflict within herself. I had labeled it a juxtaposition, or some sort of dichotomy. Either way, she thought my humor was enjoyable. I was somewhat curious as to why she kept telling me she could not figure me out. I told her the old Winston Churchill statement, you know the one, about the mystery wrapped in an enigma inside a paradox.

After dinner, some heavy melancholy made me tender. I could not describe this sad sorrow. Two different people approached me to ask if I was okay, to describe the problem. All I could do is equate it with not enough time to myself. That is partially true. The displacement I felt was more being somewhere that is so beautiful, I felt at peace, and yet, it is constructed, all just an illusion. Alas, the question plagues my thoughts once again, what is real?

There are so many directions one can go with that, and the two or three best possibilities are somewhat depressing. The night ended with not enough time to cover all the emotions boiling to the surface.

All the signs I have heretofore come across all point in one direction. If by some heavenly orchestration, it has been strewn before my eyes, forever impressed upon my heart. Being, after seeing what I have witnessed, shall no longer be the same. I have found a glorious emotion that springs forth from within, and it drives me, propels me, to not be lax, to avoid the fetters which the average townsfolk lives dismayed throughout the rest of their days. No, my mind and body say, 'Not I.'

There is a battle to control this two sided impulse: one, who shall go forward, and the other, which has given up. The clear decision lies not only in the fact that there is no decision, but to what this drive shall accomplish, where it shall take me, and how I will turn out, or to what extent of being or essence I will have evolved if/when I come out the other side, if indeed, there is another side, to what aim is it, and if there is not (an other side), then for how long must I battle?

Is there a point one must transpose that begets an instinct to do, to never quit, to not look back in fear, to wrestle with betterment, to refuse discontent, to reject complacency, to throw off doubt, to cast aside regret, to displace paranoia, to remove anxiety once and for all, to experience life as a human being without these, and if they shall be forever present, to what ends must one suffer to cope with such violent distrust at which the mind now wars with the body.

What am I to feel when there is no sense to compare it to, when I have emotions from nothing logical, what then is my worth? What if I contain a shelter with five different rooms for the senses, and no one ever visits the main room? What good does a self do if there is no head on ones shoulders, if there is truly no unified character to develop into a core identity?

The character beyond identity is ambivalent. This character has been plunged through the depths of insanity, received diagnosis, and is beyond the local scare tactics of words like insane, schizophrenic, manic, bipolar, psychotic, creep, mentally ill, madman, lunatic, maniac, etc. What I seek is a recovery from having survived hell on earth.

The imbalance is to know who you are and understand that 'you' is not the person you know to be yourself, that in a world of zero identity doubled with the loss of context, there comes a complete sickness.

After living with this sickness for a while, one comes to understand that one has always had this sickness, its symptoms simply becoming apparent at the moment in an overwhelming clarity.

A search to find the ultimate source of being, that of one's identity, if it so exists, is now the evident, clear path I must follow. Even if it does not, the process of writing is in itself the most therapeutic tool I have ever used in all my life.

If this writing accomplishes nothing else, it is to inspire the inept to pick up a writing utensil, start scribbling a journal, notes, pictures, a doodle, anything, but in doing so hopeful that the process may turn into some success or grasping for a more complete identity, to where down the road one may look back and say, when I wrote, the writing process, I had some sense of belonging, of being and feeling, and that in that, one may find hope to continue on through the drabness. That is my only desire.  

GUEST BLOG - Naomi Cunningham Dexter - Dystonia & Mental Health

Hi guys -

This week's guest blog is from Naomi Cunningham-Dexter about how the process of being diagnosed with Dystonia, took a severe toll on her mental health. A very interesting and motivating read!

Also - always on the lookout for guest bloggers - whatever your experience. Get in touch
Twitter - https://twitter.com/letstalkmhealth  
Facebook - https://www.facebook.com/letstalkaboutmentalhealth 

Suzy x

Naomi Cunningham-Dexter is 38 years old and is a Health and Social Care Partner for a national charity developing mental health, learning disability, older people and health and wellbeing services.  Naomi lives with the neurological condition called Dystonia, the third most common neurological disorder.  This has an impact upon Naomi’s voice and neck with the brain not instructing the muscles to contract but to spasm.  This results in severe pain and difficult at times in communicating.  This has had a significant impact upon Naomi’s mental health and in this blog she explains the battle she has faced to get the support to enable her to accept and cope with this life changing incurable condition.

My Dystonia journey 

Words and phrases people use to describe me; bubbly, beautiful, tenacious, passionate, intelligent, one in a million, quality and inspirational.

Words and phrases I would use to describe myself; misunderstood, conflicted, unpredictable and passionate.

There are two sides to every story and quite often two sides to every person.  Mine started seven years ago when my world and ‘me’ changed, or ‘evolved’ as I would like to now call it.

The start of my journey

I enjoyed my job, workaholic was probably an understatement. I worked as a manager for a Housing Association in their ‘Care & Repair’ department, we made a real difference to lives.  Bringing homes up to a decent standard, enabling patients to return from hospital and be reunited with families, and facilitating adaptations to enable people to stay in their homes; quite often with terminal conditions.  I took incredible pride in my work and also had a significant determination to progress my career to Chief Executive level.

During my time with this organisation I experienced severe persistent sore throats, my doctor put me on antibiotics for nine months, my voice sounded permanently hoarse, I sounded nervous and I felt as if I was being strangled.  I thought it was nothing more than a severe virus.  As this progressed, my voice got quieter and continued to deteriorate.  I was starting to get asked ‘do you have a sore throat?’, I could see people straining to hear me and when I was on the phone, I could hear the volume being turned up so people could hear me.  One day I will never forget, I went to see a client and they kept repeating a comment ‘your voice sounds awful’.  I was trying to help resolve an issue and all they focused on was my voice.  My family told me how awful I sounded on a daily basis, my work colleagues would make daily comments about my ‘sore throat’ and gradually everyone’s attention stopped being on what fantastic work I was doing but on how I sounded.  

This continued for nine months whilst my doctor tried various medication but eventually referred me to a specialist.  

Phase two of the journey.

The first consultant I saw decided that it was poor ‘vocal hygiene’ and referred me to speech therapist who worked on my breathing and techniques to help my volume.  Whilst this therapy was happening the situation was now starting to take its toll on my mental health.  Losing your voice is losing your ability to communicate, although mine was not gone completely, when I spoke people found it hard to hear me.  The word ‘pardon’ became my nemesis and filled me with panic that someone hadn’t heard me.  How can I do the job that I was doing with a voice like mine?  How can I instil confidence in others when I don’t have it in myself? I sounded quite frankly awful and I was starting to lose the one thing which defines us all, my voice, my way of communicating and my identity.  I recorded myself once and listened to what I sounded like, this resorted me to tears as the reality of what was happening and how I sounded hit me, it hit me hard.  There was nothing I could do to stop it and no answers as to why.

Looking back now, this is when I started to change.  I became quiet, withdrawn, lost my confidence, stopped socialising, avoided conversations, I questioned my ability to do my job and I felt alone.  No one could really understand how I felt and the only comments I got (or at least remembered) were all negative about my voice.

Every time I went for speech therapy, they asked me to rate my mood on a scale of 1 – 10, 10 being the worst, I was always an 11+.  I cried every time I went to see them, even they did not understand the emotional and psychological impact.  I kept going though and carried on at work with the façade that I just had a ‘sore throat’ and just nodded at the negative comments saying ‘it’ll get better soon’, knowing full well that my life had now changed forever.

After nine months of speech therapy and deterioration of my voice, with the additional element of what I referred to as a ‘stutter’ which I now know as ‘voice breaks’, I decided to pay privately and see an ENT specialist.  He thought it might be a significant reflux problem so referred me as an emergency case into his NHS clinic.  Within two weeks I had an endoscopy which confirmed reflux and a rolling hiatus hernia.  I finally thought I had the answer…….things will start to get better!  I started on a course of new medication and was referred to a new speech therapist.  Two months into the medication there was no change at all and in fact, things were still deteriorating.  I saw the new speech therapist and after having half an hour with her, she said to me ‘you have spasmodic dystonia (SD)’.  Now, I had heard of this condition and had asked whether I could have this to be told that I was too young at only 32 and my voice wasn’t typical of an ‘SD’ voice.  

This was an absolute ‘Eureka’ moment for me.  Finally someone agreed that I had this condition.  I was referred to a voice consultant, this was now two years after initial symptoms.  My mental health at rock bottom, my confidence and self-esteem at rock bottom, starting to question my ability as a parent and as a person.  I cried a lot, daily, I would cry myself to sleep.  I would question why do I have to have this condition.  Everything was so positive and was good two years ago.  What’s the point in going on if I am going to have this condition forever?  I would wish for someone to take my arm away over my voice.  Work was tough, meetings difficult, holding team meetings a challenge, talking to commissioners even harder.  The worst being ANY situation with background noise, with SD you can’t physically raise your voice to be heard over others.  You can never underestimate the impact of losing the way you communicate; you probably can’t appreciate it unless it has happened to you.  The other massive impact were the comments from others………all negative.  Every conversation I seemed to have were negative and all revolved around my voice; how bad I sound, have you got a sore throat again, you feeling ill again, what’s wrong with you, you sound awful, pardon (that dreaded word).  Maybe it was just my state of mind but there was nothing positive, or nothing which I could see that was positive.

I saw a voice specialist three years after initial symptoms who did not agree it was SD but offered me a treatment option of Botox into my vocal cords which might help.  Even better, this could be done the next day.  I absolutely jumped at the chance to try anything.  Within 24 hours my voice was back to ‘normal’.  It worked!!  Cue happy Naomi again, I was fixed, cured, everything would be back to how it was.

Here comes phase three

Probably the most difficult, most challenging part of the journey.  Botox worked and it worked well but gradually my voice deteriorated back to how it was.  I also had a neck ‘shake’ and it started pull
to the left.  I had had this neck thing for a while but always just thought it was a muscle issue and it caused me no real issues.  I’m quite lucky that I have long hair so could hold on tight to keep it under control!!  

The voice got worse and the head started to shake, but during this time I actually managed to get myself a new job.  So I couldn’t be that bad surely?  It felt like things were on the up even though the voice was on the down!  I took great positivity from my new role.  After a couple of months in my new role my voice deteriorated significantly.  My employers were less than supportive and restructured the management team and made my role redundant.  I maintain, and always will that this was partly due to my condition.  My consultant was experimenting with levels of Botox and whether to put it in the front or side of my neck, they were still not convinced it was SD.  I now found myself jobless and being experimented on.  I went for jobs and can’t even remember the number of interviews I had.  Every time I was questioned about my voice and my ability to do the job……even though I HAD done the job and was more than capable.  Not having a job, no purpose again drove down my mental health to all new depths.  I really didn’t want to be here; I didn’t see a point in being here.  No one understood, no one tried to understand.  No one else I knew had this health condition.  I was completely alone and saw no way out.  I threw myself into trying to get work but with every rejection I travelled a bit further down the depression spiral.

I kept seeing my consultant who kept experimenting, they decided to go back to the original method of injecting when it had worked but to inject more Botox, it worked!  Miracle number two!  And the day after I had Botox my voice was PERFECT and I had a job interview.  I performed exceptionally well in the interview and was offered the job on the same day.  

I really enjoyed my new challenge and being employed again but treatment was still hit and miss.  It felt like a vicious cycle, I would have Botox which might or might not work, my voice would start to deteriorate and my mental health would go with it.  My consultant was reluctant to inject me with Botox as they felt that I didn’t have SD so they wanted to go as long as possible between injections.  This made my job virtually impossible.  Again I had comments about my voice, work was stressful and things quickly began to spiral out of my absolute control.  On top of this, my best friend and who can only be described as my rock committed suicide.  This triggered a guilt inside me which will live with me forever.  Someone who had tried so hard to help, understand and reassure me yet I couldn’t do the same for them.

This was the start of the final chapter of this journey.  

I absolutely hit rock bottom, this could have been a combination of things but I felt I had finally lost control of everything.  My consultant was making decisions on my behalf and not understanding the impact, I lost my best friend, I was struggling at work, I felt worthless, useless……..what was the point?  I was an awful parent, a bad friend, no good at my job and I felt like complete loser.  At this point I sat with a cocktail of drugs in front of me thinking about my next move.  I had managed to stockpile a lot of medication which I know would be my way out of this.  It would all be over and I would be free from all of the pain, suffering and lets face it, the world wouldn’t lose much.  I had been asked previously to rate my mood on a scale, which I always answered truthfully and it was quite obvious that I was struggling, yet no one had ever asked me how ‘I’ was, the condition rather than the person always being the focus.  So this was it, a choice of live or die.

At this point I called my GP practice and said I need to see a doctor urgently.  I got an immediate appointment which quite simply saved my life.  The GP I saw took the time to listen.  I cried, she listened.  She had never heard of my condition and researched it whilst I was with her so she could
understand.  We discussed how my dystonia had impacted me emotionally and recognised the scary dark hole I was in.  This was a massive turning point, MASSIVE!  This doctor I owe my eternal gratitude to.  We discussed my treatment plan with the specialist and why decisions were being taken not to inject me when I needed it, we discussed a referral for cognitive behaviour therapy (CBT) and we discussed medication to help me with pain (which would also help me emotionally).  I spent about 40 minutes with the doctor, time was not an issue, I was given time to talk and between us we agreed a plan.  I finally felt like someone had listened to ME.  This doctor now became my voice and my advocate.

After this appointment, this started to give me the gradual confidence to question the treatment I was receiving.  I actually had a discussion with my consultant about my Botox treatment plan, me telling them what I wanted.  I ensured that I pointed out how this had had a significant emotional impact.  I went for CBT which helped me rationalise my thoughts, I questioned my medication which lead to a referral to a neurologist, something I had always asked for and been refused.  I was finally able to start to take back control of my life.

My neurologist conducted a number of tests which included looking at other causes of my condition including MS, Parkinson’s and Wilsons disease.  I was subsequently referred to the dystonia specialist regarding my neck, the specialist questioned why I had not been referred sooner as my neck dystonia was ‘severe’. My dystonia is now classed as generalised.

Now, seven years down the line I can look back with hindsight and be grateful for my journey. There are several learning experiences I share with those living with dystonia.  I am an active peer supporter and would like to think of myself as a peer educator.  It genuinely worries me that I see so many living with long term and life changing health conditions which are having a significant impact on their mental health which is not being recognised.  Once a patient is passed on to a consultant, it is unusual for the GP to then be involved.  If this is the case, the consultant should surely be considering the psychological wellbeing of ANYONE diagnosed with a long term or life changing health condition as a standard part of their treatment plan?

I will always be living with a physical and mental illness but I am determined that parity of esteem is realised.

Today my priorities have changed.  I no longer want to get as high as I can in my career.  Through my job as Health and Social Care Partner and my ‘living’ experience, I simply wish to educate, advocate and change lives.  I want to make a difference and I want people to learn from my experience.  I am passionate, I am tenacious, I am determined but more than anything I am a survivor.  I will always be someone with ‘living’ experience but it will not beat me.  I live on to help others on their journey as proof that against all the odds, even when you have been diagnosed with a life changing condition, you can use it to evolved.  It has taken me six years to come to terms with my condition and to almost grieve the loss of the person that I once was, but I believe with a passion that through the changing of pathways for dystonia, raising the profile of peer support and offering the psychological support to those living with life changing conditions, others will be given hope, lives will be enhanced and lives will be saved.

I have now set up my own Community Interest Company and intend to use my experience and networks to help others who are struggling with dystonia, this will include online counselling support for those I see on a daily basis who are in crisis and not offered any psychological support.  Hopefully this will enable them to talk online to a professional in the interim period during their wait for CBT.   

GUEST BLOG - Stuart MacGregor - how illnesses can affect mental health

Hi guys -

New week, new blog.
This week's post is from Stuart MacGregor who is living with a close family member with Alzheimers disease, and here he discusses how that affects his mental health.

If you want to do a guest blog please get in touch (and like my page on facebook, follow me on twitter) . Please get in touch whatever experience you have, it would be great to hear your story.
Facebook - https://www.facebook.com/letstalkaboutmentalhealth 
Twitter - https://twitter.com/letstalkmhealth 

Xxxx


Stuart MacGregor, is 25 and living in Rugby with his family. His father is badly affected by Alzheimer's Disease and here he describes the issues and difficulties experienced by the people caring for him while they too live with their health issues.

Family living with Alzheimer's Disease

I have decided to write about my experience living with my dad who has suffered from Alzheimers for the last 6 years, most sites online talk about the sufferer, how they feel and what happens to them but not many pages describe the situation it puts the family in or how it damages the health of those caring for them. Hopefully I can give some back story to my dad’s health and continue every now and again with updates as the disease progresses. I will try to keep it brief in the future so not to bore people but I have to explain 6 years in the first blog.

The Early Signs

About 6 years ago, my family were doing OK, my dad, mum and brother all lived in the same house and although money issues were always an issue, we were coping. My mum and brother suffer from depression and were getting treatment for it, I had the same issue but because of the usual “you don’t understand” speech from my mother when my brother did something stupid I have never got myself sorted as I’ve never been able to have a proper conversation about it. My dad was well although he used to do strange things every now and again, we would find the bread in the fridge sometimes and a shoe in a cupboard, we saw this as just him having a moment but looking back now the signs started then. It got more serious when one night he got confused and drove the wrong way round a roundabout, luckily no one else was on the road at the time. It was then where we got him checked at the GP and after having an MRI scan we found that part of his brain was dead and that he has Alzheimers.

Effect on the Family

As soon as we found out we had to plan for the worst, even with current medication we knew it was a terminal illness and that his condition would get steadily worse until that point. My mum went on a few carer courses, but most of it wasn’t useful at that moment. We regularly went to see the doctor who put my dad on a trial drug and showed us how to keep him well and try to slow down the decline and keep his mind fit.

Within the year you could tell he was changing, he couldn’t keep up with conversations, being around large groups of people would confuse him meaning Christmas/Boxing Day parties were a no for him, the first year I stayed behind with him while my mother and brother went out. Within the second year he was forgetting things, where he put his glasses, where his clothes were, he would put on my shoes and shirts assuming they were his. His attitude started to go downhill too, he became more snappy and at times a horrid person. He would have tantrums just like a child, he refused to take his pills and at times wouldn’t want to eat or drink.

In the third year my brother left leaving my mother and myself to look after him. At this point, he didn’t know who I was, to him I was just a family friend and so too was my mum. My mum had to quit work to take care of him which reduced our money income, carers allowance and disability allowance were difficult to achieve because at the time we didn’t qualify, now that guidelines have changed we have a steady income in which we can care for him.

In the last few years he has physically got worse, he gets tired and will sleep the majority of the day, going to the shops can be difficult and when you make plans and he just refuses to get up the day can be ruined. In the last year he has started having incontinence issues, he will need the toilet throughout the day but because of his poor memory he will forget where the toilet is, he has frequently got lost and had to go against a wall or in the shower, and will just go while sitting down and not say anything out of shame or just not knowing what he’s done. The constant cleaning and having to follow him everywhere means my mum has to get up with him every time he needs the toilet at night to ensure he’s safe and everything stays clean.

Adaptations around the house

Since learning about the illness, we have adapted the house to make it safer for him and to make it easier to look after him. Firstly we got the bathroom re done and removed the bath and installed a shower, the kitchen has had new appliances such as a special oven which only heats the metal pans and prevents him touching it when hot. Along with many more additions to the house such as new locks on the front and back door that he can’t open, we have spent over £10,000 on it which we wouldn’t have had to spend if he were healthy.

How it has affected my life

I’ve never been the most social person but since the illness has been worse, I’ve used drink to get away from it, I find it calming but don’t let it damage my health. It allows me to get away for a few hours and see some friends and just talk and not have to think about my day. I’ve not been able to start a relationship, I can’t bring someone home to see my parents as my dad might get frightened and I have to commit my time to look after him and be available if needed day or night, I’m also scared of talking about it to someone, having to explain that I still live with my parents and won’t be able to spend as much time as I want with someone, I think it’s better to just not be happy than turn someone away and feel worse. This need to be with someone makes my physically sick especially when I know I like someone and can’t do anything about it.

So where are we now?

At the time of writing this, my mum and dad are on holiday with his sister and brother in law, they too have a family member with the same situation so my mum can talk freely to them. I’ve got the week to do as much painting around the house as possible, we couldn’t do this before as my dad would just keep touching things. My current situation is that I want to move out and gain some independence and hopefully have a better life, maybe even start a family but I can’t leave my mum to look after him, I save for a house but sometime in the future he will die and my mum; unemployed and old won’t have an income and my savings may have to go towards keeping her well in her old age.

So that’s the start of my blog, I will add to it with updates or when things change in the house, hopefully things don’t get too bad but the disease is still not totally understood. 

Discrimination against mental health

Hi guys! 

I want to say a massive hello to my new readers and twitter followers - I now have over 1K following this blog on twitter so hello to you all and I hope you can be helped and encouraged by the stories shared on my blog.

If you haven't already, please like my page on facebook or follow me on twitter:
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Please get in contact if you would be interested in sharing your story - always open to guest bloggers and would love to hear from people of all experiences and all walks of life!



It feels like it's been a very long time since I've posted a blog written by myself...


I'm in a really good place right now, which is perhaps why I haven't been able to find anything to write a blog about.
Of course things can still be tough, but I feel pretty in control at the moment.
I know it won't last forever but focussing on the here and now, all is well!


One thing has recently struck me though that I would like to start a discussion on. I've realised just how much we have to fight for our rights, which seems a bit crazy in this day and age.
I realise we have a long way to go in educating everyone about the realness of mental health and that we have come a very long way, but the fact that we are having to put up a fight in certain areas seems a bit ridiculous in 2016.

I found myself in a position recently where I personally felt I was discriminated against for having mental health problems. Without going into context, I basically felt my illness wasn't treated the same way a physical illness would have been treated.
This massively crushed my confidence, and put me in a bad place, questioning myself and my abilities as well as triggering my anxiety to become worse and worse.
I ended up fighting for my rights and after putting my case forward, ended up with the outcome I had wanted.
But the fact it got to that point in the first place is ridiculous. I know many people, like me, would stand up for themselves and fight for what's right, but I know there's also a few people who wouldn't have the confidence to do that, so would allow themselves to be treated unfairly and made to feel small, and this isn't fair.

To be honest, it's just furthered my passion to get everyone to understand mental health.
To understand that everyone is different when it comes to mental health problems and that it's not all black and white.

Anyone with any form of a disability is protected by the Equality Act.
You might not consider yourself to have a disability, but the Equality Act defines the word disability as:
‘a physical or mental impairment which has a substantial and long-term adverse effect on your ability to carry out normal day-to-day activities’.

So mental health problems are considered as disabilities.

I want to hear your stories about discrimination against mental health. Please get in contact if you can share an insight into this, or would like to write a short piece for a blog.

Please do stand up for yourselves, and let's work together to talk about mental health!!

Suzy xxx