Reasons To Stay Alive

"You were there before it. And the cloud can't exist without the sky, but the sky can exist without the cloud."

New PJs, hot chocolate and a good book. Isn't that a reason to stay alive in itself? 

'Reasons to Stay Alive' by Matt Haig is one of the best books I've ever read, and is certainly the book which has had the biggest influence on my life. It is one man's account of his journey through depression and anxiety - but not only this, he gives such invaluable advice and strategies on how to understand and navigate mental health. It is written with such honestly, vulnerability, wisdom, and beauty that it makes for exquisite reading. I genuinely believe that EVERYONE should read this book at some point in their lifetime - preferably sooner rather than later!

A book for all!

'Reasons to Stay Alive' is a book for everyone, regardless of whether they have ever suffered from mental health problems. Indeed, in the first section of the book, Haig explores how many people will experience mental health problems during their lifetime: 1 in 5 will experience depression. This indicates how, even if you never have a mental illness yourself, you will certainly come across many others who do. Haig also points out how dangerous mental health illnesses really are, he states "Depression is one of the deadliest diseases on the planet. It kills more people than... warfare, terrorism, domestic abuse, assult, gun crime - put together". These facts make the chapter 'How to be there for someone with depression or anxiety' so much more important. Educate yourself and be prepared. 

Furthermore, Haig tackles the stigma surrounding mental health, head on. One of the comments that had a significant impact on me was this: "depression is not something you 'admit to', it is not something you have to blush about, it is a human experience." This massively helped me to recognise that this was something happening TO me; I didn't need to constantly beat myself up with thoughts such as 'why am I thinking and feeling this, my life is fine - I have no reason to feel this way!' and other guilt driven musings.

Voicing what I never could.

There are so many things I have thought and felt during my time with anxiety and depression that I simply haven't been able to find the words to express to others. The chapter 'Things you think during your first panic attack', for example is painfully accurate and may be helpful for others to read as a way of self-diagnosis. Indeed, when I had my first panic attack I had NO IDEA what was happening to me and genuinely believed I was dying. 

Other feelings that Haig miraculously manages to express in words include the feeling of being trapped: "I never realised how you could be locked inside your own mind", the internal battles you have inside yourself - almost as if there are two versions of you, how you develop a fear of "having nothing but (your) own mind to listen to" and so as a consequence fill your time until you exhaust yourself, how you feel like you are drowning and "desperately trying to keep afloat", you feel "disconnected" as if you don't quite exist in this reality. As someone who has also suffered from physical ill health, I have always said I would choose to live with any of my physical problems rather than my mental problems ANY DAY! Haig, again, manages to explain this perfectly. He says, "you are not your back but you are your thoughts".

Haig delves into the feelings of guilt often experienced by people going through depression and anxiety. He describes "the weight of being a son that had gone wrong. The weight of being loved." You feel awful that you can't always be the happy and healthy daughter or son your parents will have hoped you would be.

Finally, and perhaps most significantly for me personally, Haig explains how he often would "build up hours and minutes like pounds and pence" and "would want 9am to be 10am. I would want the morning to be the afternoon. I would want the 22nd of September to be the 23rd of September". This is certainly something I have always done when going through a particularly bad patch of anxiety. I would count how many hours of the day I had already got through and how many more I still had to go. I would congratulate myself on making it through another day. I would think 'well, hey, at least I'm one day closer to this all being over.' It wasn't until I saw these thoughts written down in 'Reasons to Stay Alive' that I realised just how sad it was that I was simply 'getting through' life - rather than cherishing it and enjoying it. I wanted to instead see every minute as precious. I knew something had to change.

From falling, to rising, to being.

At no point in the book does Matt Haig try and turn the whole affair into fluffy clouds and unicorns. He says things how they are. He presents the reality. Yet he gives hope; he writes about how to cope and how to move forward. One of my favourite quotes from the book which gives me such a sense of hope is this: "Your mind is a galaxy. More dark than light. But the light makes it worthwhile... You are moving through that galaxy. Wait for the stars." I love this so much that I have it written on the wall by my bed and it is my pinned tweet on twitter ahaha! 

Haig gives suggestions of activities or thoughts that have helped him, such as yoga: "I was a yogaphobe, but am now a convert.", he suggests it's okay to be 'thin skinned': "Because we are here to feel", he points out how one can "walk through a storm and feel the wind but you are not the wind"... "You are the observer of your mind, not its victim". Gems like this are so, so helpful. I try to replace the negative thoughts with positive ones like this.

What would Matt Haig do?

I have learned and gained an awful lot from reading this book. So much so, that I have found myself in situations that would usually make me anxious and - instead of reacting in the way I usually would - I think to myself: 'What would Matt Haig do?' For example, a couple of months ago I was sat in the waiting room at the hairdressers and really needed the loo. Anyone else in this position would simply get up and ask a member of staff where the bathroom was - without even thinking about it. I however, did not. Anxiety kicked in and I started thinking... 'Why didn't I use the toilet before I came? I'm such an idiot, why didn't I see this was going to happen? What if they think I'm weird for asking to use the bathroom? What if just as I stand up, the receptionist goes off to do something else and I'm left standing looking stupid? What if the hairdresser comes to get me and I'm on the toilet instead of in the waiting room? Will they think I've gone and just get the next person? What if I get locked inside the bathroom and can't get out? What if it's dirty and dark? But if I don't go now I'll be sat in discomfort the whole time I'm having my hair cut. What if it gets to the point that I'm so desperate that I get out of the chair WHILST she's cutting my hair? What if I wet myself? I'd never be able to be seen here again!' 

Yep. All this went through my head in the space of about a minute. But then I thought: No. What would Matt Haig say if he was here right now? I replied to myself: he would tell me to be brave to take the leap, to just do it! And so I counted down from 3 in my head. 3...2...1! And got out of my chair and walked over to the receptionist. I asked if there was a toilet that I could use, he said yes, and showed me where to go. He was so lovely and friendly and put a genuine smile on my face just by the way he spoke to me. Of course, the bathroom was fine! In fact it was more than fine; the walls were covered in happy, inspirational quotes which lifted my mood. You'll be pleased to know I didn't get locked in and I didn't miss my appointment..! This situation was so small and ridiculous, but to me it was a massive victory! I was waiting for everyone in the salon to stop what they were doing and applaud me for not giving in to my fears.

Just bloody read this book!

If you haven't already worked this out, I think you should read this book. Like I mentioned before, it doesn't matter if you don't have mental health problems - this book will help you to spot the signs if it ever does happen to you, and will educate you on how to support those who are going through it.

It's easy to read even if you're in the pit of depression as there are lots of very short chapters, and chapters that simply consist of bullets points etc. There are suggestions for further reading at the back, along with helpful contacts (such as Mind), and advice for seeking help for a mental health problem. 

Just do it, trust me.

Thanks so much for reading!

Love,

Katie xxx

M.E. and Me

What is M.E?

M.E (Myalgic Encephalomyelitis) or C.F.S (Chronic Fatigue Syndrome), is a serious neurological disease which can cause long-term illness and disability, it is in the same category as Multiple Sclerosis and Motor Neurone Disease . There are a whole range of symptoms which vary from person to person, and patients may be diagnosed at different points on the spectrum of severity - from mild to severe (bed bound, tube fed, unable to speak etc.). M.E can be fatal but only in the most extreme cases; the death rate is roughly 3%. What is much more common, is patients committing suicide - not necessarily due to depression, but out of desperation: they are so ill/disabled and have minimal support from health professionals and even their friends and family. 

Symptoms include:

• severe fatigue/malaise
• pain: muscle pain, joint pain, neuropathic pain, headaches etc.
• fasciculations (visible muscle twitching/spasms)
• cognitive dysfunction: brain fog, short term memory loss, trouble concentrating etc.
• trouble with temperature control
• sore throat, enlarged glands, and other flu-like symptoms which indicate a weak immune system
• sleep problems - most commonly patients get little to no benefit or refreshment from sleep
• irritable bowel syndrome
• nausea
• sensitivity to light and sound
• anxiety and depression

There is little understanding about this very debilitating condition, However, the basic explanation is that the symptoms are caused by the brain sending the wrong signals to the body - hence why sufferers experience extreme exhaustion after even the smallest of activity and severe pain without injury. Brain scans of M.E patients show how the neurological pathways in the brain have become connected in the wrong way. There is currently very little research and understanding as to how and why this happens!

My Story

I first became ill in the October half-term of 2009, I was 11 years old and had just started secondary school. It started with the fatigue. I slept for basically the whole week! When I tried to stand or exert any energy I felt weak and nauseous, I was also suffering from a constant headache. After feeling like this for a couple of weeks, my mum took me to the GP. This was the start of a year long journey consisting of many blood tests (I soon lost count), and visits to various doctors and health specialists, until I was finally diagnosed with M.E/C.F.S by a paediatrician in October 2010. This was great news for a blissful 5 minutes in which I sat there thinking "Great! We finally know what's wrong with me! No more scary diseases being suggested and needles being poked in to me here, there and everywhere"... until I saw my mum had tears in her eyes as she looked at the doctor and said "I was really hoping it wouldn't be that." 

And so that was the moment I was told there were no treatment options for my condition but that the doctors could only try to help me manage my symptoms. I left the hospital that day finally being able to put a name to my condition, yet with no real prospect of getting any better.

The first 18 months that I was ill has to have been the worst period of my life by far. I was a young teen, completely isolated when I should have been at school and enjoying sleepovers with friends on weekends: enjoying all the things normal kids get to do. Yet my days consisted of my bed, the sofa, and occasionally making it into school for a few hours at a time. Due to my peers being insensitive, puberty experiencing, immature 12 year olds at this time, I lost pretty much all my friends. This is not something I blame them for or feel bitter about - they weren't old enough to understand how to handle my situation, however, it of course made my condition so much harder to bear. I was sad and lonely, with only crap day time telly for company.

I had to sleep during the day. This is a picture of me whilst staying with friends. I had to leave the fun and go to bed during the day but Lila and Tink decided to come and nap with me! I guess it's true what they say about animals sensing when someone is unwell and needs a little TLC.

After 18 months of this illness, I tried a treatment called LP. This was a little heard of treatment, that was scorned by many doctors and was not available on the NHS, but I was desperate, and so were my parents! And it worked! I experienced an incredible year of good health, for which I am extremely grateful. I made new friends, re-built my confidence, and began to really enjoy life again.

Once I was well again and back to school, I became chums with this absolute gem, she is my best friend to this day. This is a picture of us on my 15th Birthday.

However, after this year, my symptoms slowly began to creep back in, my health spiralled out of control again until I reached the point where I am now: constantly experiencing mild to severe fatigue; neuropathic pain in my legs, arms, and back; fasciculations; IBS; occasional brain fog and sensitivity to sound; and un-refreshing sleep. Although I do my best to live as normal a life as possible, these symptoms make day-to-day living a thousand times harder for me than everyone else. I do not want this post to be a 'boo hoo look how hard my life is' post so I will leave you to use your own intuition to imagine how these symptoms have an affect on me. 

I feel I have pretty much mastered the art of pushing through the pain and exhaustion and painting a big smile on my face to cover how I'm suffering inside - often people's initial reaction when I tell them I'm ill is "Wow, you would never know!". This is something I've often taken pride in: that I am able to appear happy and healthy so that people decide how they feel about me as a person without any preconceptions or assumptions based on my health. However, this approach often comes back to bite me on the bum as it were! Both because it can mean people don't actually believe I'm ill and because I often push myself too far and end up making my situation worse for myself. This is something I am still working on: getting the balance between activity and rest, right.

I, of course, have days when my situation feels hopeless and I feel scared for my future, yet most of the time I have a very positive attitude! I am learning more coping mechanisms all the time, I'm even considering giving LP another go. I know my situation could be so much worse and I choose to focus on all the blessings I have in my life: an incredible family, wonderful friends, a lovely home etc. I know this is such a cliché but I really feel that having this illness has strengthened my character, I've learnt to value the small things in life, and have discovered who truly cares about me. 

#MillionsMissing

Now we get on to the real reason for making this post. Quite frankly, the way the medical profession treats M.E/C.F.S patients is shocking. Doctors are not educated properly about the condition, for this reason for 67-77% of patients - such as myself - it takes over a year to be diagnosed. In addition, for about 29% of patients, it takes up to 5 years to receive a diagnosis. As I previously mentioned, even once you have been diagnosed, there aren't any treatment options as very little research is being carried out for M.E. This is completely ridiculous when you know that approximately 250,000 people currently suffer from this condition in the UK, along with up to 2.5 million people in the USA and millions of others around the world. Meanwhile, other conditions which affect less people are given more funding. For example, Parkinson's disease affects roughly 127,000 people in the UK, and Multiple Sclerosis affects around 100,000 people. I am in no way suggesting that these conditions are not worthy of the funding or research that they receive, it just baffles me that a condition of equal severity which affects thousands more people does not receive nearly as much funding for research.

This diagram illustrates the disproportionate relationship between the number of patients with M.E/C.F.S and the amount of research funding into the disease, compared to 4 other major illnesses in Canada. This relationship is mirrored across the globe.

The following are some quotes from two doctors who have worked with both M.E/C.F.S patients and H.I.V patients which I feel highlight this issue well:

"My H.I.V. patients for the most part are healthy and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in or care for their families. I split my clinical time between the two illnesses [AIDS and CFS], and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it." - Dr. Nancy Klimas, AIDS and CFS researcher and clinician, University of Miami

"[CFS patients] feel effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades". - Prof. Mark Loveless, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University 

In response to this, M.E Action started a campaign called 'Millions Missing' to challenge governments to invest more money in M.E research by providing a voice for all the millions of M.E sufferers around the world who do not seem to be significant in the eyes of the medical profession. On the 27th September this year (just a few days ago) this movement reached the UK and demonstrations were held in various major cities up and down the nation. The main feature of all these demonstrations were rows of donated shoes, each with a label telling the story of an M.E patient, in order to illustrate how these patients are forgotten and left to suffer alone without medical support. The biggest of these demonstrations took place in London outside the Department for Health, during which (in addition to the rows of shoes and people with posters and leaflets) a very brave young lady called Janet Eastham stood naked and blind folded, holding a placard which read: 'YOU CAN'T IGNORE M.E. NOW'. I of course can't post the image on here but it is an incredibly powerful photograph and is worth looking up.

I thought this movement was brilliant! It brought attention to issue in hand in a peaceful and visually impactful way.

How you can help

Thank you so much for reading this, I know it was very wordy and long but there is just so much to say! I hope this post has widened your personal understanding on M.E/C.F.S. and that you will in turn help to raise awareness. I will leave a variety of links below where you can find more information and advice. Please spread the word about the lack of support for this condition so that we can encourage our governments to step up and take action! There are several very easy things you can do to spread awareness including: sharing this blog post or any of the links below, retweeting any tweets about the issue, signing online petitions aimed at persuading the government to invest more into M.E. research, or donating money to the M.E. Association or M.E Action etc.

Thanks again!

With love,

Katie xxx

Helpful links and more information:

M.E. Association

Association of Young People with M.E

M.E Action (Millions Missing)

#MillionsMissing

Sign a petition