Farewell, Summer

Farewell, Summer

Dear Summer,

I want to thank you for warmth and light, for lazy days and sun so bright.

You leave me feeling refreshed and renewed; after time off shared with friends and good food.

Although holidays, BBQs and summer tunes are all very fun, I find myself asking Autumn to come.

I hope you don't mind, it was great while it lasted, but now I'm ready for boots and hot chocolates. Bikinis? I'm past it!

That being said, there's a part of me that will miss you Summer, I really will.

So, until next year, good bye and farewell.

∼

Now, people who know me well will know that I like summer but it is definitely not my favourite season! I am much more of an autumn/winter kinda gal. Don't get me wrong, I love certain parts about summer: picnics, day trips with friends, driving along with my sunglasses on and windows down with 'feel good' summer tunes blaring. I've made some great memories this summer - be it raspberry picking, drinking wine on our balcony on holiday in the South of France, reading a good book in the garden on a sunny day, having an excuse to eat copious amounts of watermelon, or simply just feeling the cool breeze through my hair on a hot day. 

I'm not joking when I say I love melon... here I am looking very happy with myself whilst eating some melon that a random man on the beach offered me lol

However much I enjoy these elements of summer, I find other parts of it very frustrating. My body doesn't cope well with heat so if I get too hot I can feel pretty miserable (as you will have seen in my previous post!). I really don't like that feeling of being all sweaty and light headed. Yuck!

I'm such a home bird and so I'm not always a fan of the expectation to travel and go away over summer. I am perfectly happy to chill out at home! Although, I have had some fab times away this summer. 

When I'm really honest with myself, I know what the biggest reason is for me preferring autumn over summer; and that is body confidence. That might sound a bit odd... do let me explain. In autumn I have an excuse to be as covered up as I wish! A standard autumnal outfit for me consists of long trousers, a turtle neck jumper, boots, a big coat, and maybe even a scarf and hat too! Here's an example from my 'Farewell, Autumn' post from last year:

Oh look, I'm even wearing gloves too!

As you can see, literally only my face is showing from beneath my clothes! Katie is very happy like this. I know I can put a nice outfit together which suits me. I am a lot less confident when my body can been seen more clearly. During summer this is unavoidable unless you want to melt (and as you now know, I don't do heat very well so wearing less is a necessity!). Since the start of secondary school when you start to become more self-aware, I have been self conscious about everything from my shape and size to the way my knees point inwards, to where it is or isn't okay to have hair growing! It's pretty exhausting worrying about all this stuff. 

I think we all worry about the way we look to some extent but being a woman during summer brings you up against a lot more pressure than normal. Suddenly everyone becomes obsessed with being 'bikini ready' and getting the perfect 'bikini body'. For some, the worries are about losing weight (society loves to tell us that you must be slim to wear a bikini), for some it's about working out to create a lean and athletic physique, and for others it is all about removing every hair from your body that isn't on your head - we're talking waxing, shaving, hair removal cream, laser treatment, everything! This is often painful, not to mention expensive. Has anyone else seen the Venus and Olay ad which now suggests women need 'on the go' razors too? For God forbid a little hair should appear when one is out and about.

For me, I've always been stressed about the fact that I'm not the most curvy of girls. From a young age I was made to believe by magazines, music videos, advertising and others medias that you need big boobs and a big bum to even stand a chance of being attractive to males (and of course, you're also made to feel that that is the most important thing in life...!) I can recall clearly at the age of 12 or 13 deciding that as soon as I was old enough and had the money, I would get a 'boob job'. I just couldn't imagine anyone ever wanting to be in a relationship with me if I stayed the way I was. Thinking about that now makes me feel pretty nauseous! It is awful that I felt that way and that it didn't seem like a big deal to me - I just thought that was the way things were. A couple of years ago I read a statistic that said 'Women who have boob jobs are 3x more likely to commit suicide than those who don't'. I found this terrifying! I think it points out the biggest problem with this culture of external beauty ideals and the obsession with changing ourselves: changing yourself physically will not ultimately make you happy. The way to be happy about yourself is to be happy within yourself. Plastic surgery does not operate on your insecurities, they will still be left behind under the surface. I know that it is soooo much easier said than done. When people say 'just love yourself for who you are' I'm like "I'M TRYING, OKAY!" It is a process and a journey that we are all on.

Since being the insecure 12/13 year old, the way I view my body has changed dramatically. A combination of changing physically as I've got older, and becoming confident in the person I am on the inside has helped. I genuinely feel now that people thinking I'm an attractive person on the outside is just a bonus - I would much rather them think I am funny, kind, and intelligent - and so I put my energy into trying to better myself as a human being than as something to be looked at. Of course, I love clothes and make up and I get enjoyment out of that stuff, I just try to make those things a lesser priority. 

I still struggle sometimes with the way I look. There are times when I still feel a bit rubbish about my figure - particularly when comparing myself to other people (which is never a helpful thing to do, but we all do it!), but overall I am much more comfortable in my own skin and more loving towards myself. Indeed, this summer when I went away with some girl friends to France, that was probably the most confident I've felt among a group of women before, in this particular regard. They are all absolute bombshells and in the past I would not have wanted to be seen in a bikini near them as I felt so inadequate next to their gorgeous bods haha! But this year I didn't feel that way. Overall, I felt happy with the way I looked and strutted my stuff in a bikini quite happily!

I must have been feeling pretty confident in myself... you can't wear a brightly coloured sparkly bikini without drawing attention to yourself! Although I did stand out anyway due to my bright white Irish skin haha!

I think what it comes down to is making the best of what you've got. I've got to the point where most of the time I can accept the way I am and find my own ways of getting on with it. My mate Livi and I like to joke that we're members of the 'itty bitty titty committee' lol. Humour works for me, and if that works for you too then great! When we joke about ourselves however, I think it's important not to be too derogatory as this does have an effect on our self-esteem over time. I also think that part of what has made a difference for me is that I've learnt not to take my body for granted due to the health problems I had. When your body doesn't work properly, you learn to appreciate it when it does. As far as I'm concerned, if my body is carrying out all its jobs effectively then I'm happy!

If you've been following my blog for a while you will know that I have a bit of a thing about letters. I have written letters on here to my Grandad, to my younger self, to autumn etc. A while ago I wrote a letter to my body. Bear with me, I know that sounds mental. Basically I got fed up about the way I negatively thought about my body and so I wrote a letter thanking my body for everything it does for me and everything it is going to do for me. It didn't take me long to realise that I actually had a lot that I could say! I would highly recommend you have a go at this! If writing a letter feels a bit weird, then just write a list of all the things you like about yourself, this would be equally effective. I promise you will have more things to write down than you thought. Forcing yourself to focus on the positive is such a powerful thing for your soul. Let's create a culture of gratitude for what we have that replaces our current culture of always striving for bigger and better! If you really struggle to come up with anything, then try asking a friend or family member - I'm sure they can tell you a whole host of things they think are wonderful about you!

Another thing I've found helpful is music. In particular, a song called 'I Am Amazing' by singer/songwriter Philippa Hanna. She is an ambassador for all things positive. I love her! I can't encourage you enough to listen to this song. Check it out here.

Writing this post has reminded me of something Philippa Hanna wrote on social media back in January and I think it sums up really well what I think of this whole issue: 

"One of the things that most grieves me most in society is the notion that showing flesh makes a girl more powerful. It's not that I don't believe in her freedom of choice, or that she isn't beautiful with skin on show. But I believe there is far more power in her intellect, kindness, creativity and passion. A female should be able to command her moment with or without emphasis on her looks. No, a girl shouldn't be made to feel shame for her short skirt. But she should never be made to believe she can't conquer the world in her jeans & T-shirt. #feminism #beauty #freedom"

When I started to write this post I wasn't expecting it to get so deep haha! But this is such an important topic. I would love to hear your thoughts on this, let's have a discussion in the comments!

Thanks so much for taking the time to read this; it is always so appreciated.

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