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What makes me, me.

The first task to tackle in my Dawn French ‘Me You Diary’ was to list everything that I am. I thought I’d find it quite difficult but actually, once you open your mind it’s easy to do. For example, I started with the easy things: a daughter, a sister, a friend, a teacher but then, having looked at Dawns very funny list I went to town: a baker, a music lover, a listener, an Idris Elba fan, a Neighbours watcher, an author…you get the idea. However, this then lead to me thinking about what makes me the person I am – partly a nature, nurture line of thinking but more intrinsically, it got me to thinking about the people who have helped me become the person I am.

Throughout our lives, from day one, we encounter people who will influence us. Some in a negative way but on the whole, no matter who we meet, they will teach us something. From a very young age I knew I wanted to teach or work with children and this was partly down to my parents but really it was down to the teachers that I had at Primary School – the ones who cared, were kind and helped me, accepted me for who I was and always encouraged me to try my best. I think throughout our school, college, university and work lives we will work with people who expand our knowledge, challenge our thought processes and teach us new ways to approach things. I really do believe you are never too old to learn something new.

When I looked at my personal life, I thought about the people who are in my life now and those who aren’t and everyone that I though of, I could name something they taught me. Something that they contributed to making me, me. Granted some of these things started with, “They taught me to never be….” but that’s just life and negative experiences often mean you become a better, stronger person anyway.

For me, I have been shaped from a huge circle of my parents friends. My mum and dad have the most amazing group of extended family! They have taught me to cherish, respect and nurture my friendships, to never take them for granted and they have done that through holding parties, dinners, writing emails and letters and visiting people whenever they can. It’s so important to maintain friendships because they are what gets us through not only the tough times but are who you want by your side to experience all the happy times too.

I am lucky that I have a strong unit of close friends too and over the years they too have taught be invaluable lessons. One main one being, that you do not have to remain friends with someone if they cause you hurt and stress. Just because you’ve had good times, like with a relationship, sometimes things can’t be fixed and that’s okay. You wouldn’t stay in a relationship with someone who makes you unhappy so why do that with a friendship? It’s a really hard lesson to learn but one that many experience and eventually, you’ll remember the good times but move forward knowing that you only have friends that truly get you, understand you and accept you for who you are, faults and all.

My friends and family have also shaped me into a person who tries to see that the glass is half full. Being positive helps in so many aspects of life and whilst I am a terrible worrier and can have a moan with the best of people, I have definitely moulded myself into someone who tries her best to see things in a positive light. And that ties in with checking myself in terms of ensuring that no matter what I am going though, to still be aware of what is going on with others – we are all going through something or other and it’s so important to talk, share and face things as a unit.

Something I have learnt within the last 5-10 years is to stand up for myself more. To speak the truth, ask for help when I need it, be brave enough to speak up when something isn’t right, say no to things that I disagree with or don’t want to do and try not to feel guilty about it. These lessons have come from a whole range of people – work colleagues, therapists, parents but mainly it’s been something that I have wanted to change about myself. Being a ‘yes’ person can have many amazing connotations but saying yes all the time can also get you into a tired, bald, stressed out, ill human being state and nobody wants that! For a long time by saying no, speaking up etc I felt guilty and selfish but I now see it as looking after myself. Self preservation would now feature in my top 3 of what I do to look after myself. Making those simple changes are hard to do and you have to be brave enough to implement them and if you’re like me it’ll be a phased introduction into your life but believe me, it’s totally worth it.

Time. This is something we all have to give. It’s free and you can always make it. I am a real advocate that if you want to make time for someone, you can. Simple as that. No arguments, no excuses. If I can manage to stay in contact with one friend in Dubai and one in Chicago, all in different time zones, we can all manage a quick – Hi, thinking of you, how you doing? – text.

The majority of people who have been in my life have the most amazing sense of humour. Laughing keeps you going – living with my mum teaches me that every day! Yes, we all have days where we don’t want to laugh or be merry but if you can find humour in a situation, a smile will make you feel lifted and again, this is something that I try my very best to do.

Take opportunities that come your way. Sometimes you have to face your fears and do it anyway. My family has always been of the thought that you should try new things, stretch yourself and have adventures. Grasp opportunities as and when you can because you never know when you’ll have that chance again. Over the years I’ve had dance lessons, swimming lessons, singing lessons, become a life guard in America, learnt the violin (badly), flown in a helicopter, lived and worked abroad, sailed around the Whitsundays, hiked the Grand Canyon, helped in an elephant orphanage, seen the pyramids in Egypt…and in turn they have shaped the person I am. They’ve given me life experiences and memories to talk about with others and made me a much more rounded individual. I’d rather have an album full of photos and diaries full of memories than a bank full of money and nothing to talk about!

I could go on forever about other things that make me, me but put simply into a list, here are my top tips for what’s helped me become the person I am today.

  1. Surround yourself with family and friends
  2. Don’t be afraid of self-preservation
  3. Give time and spend time with interesting, fun people
  4. Have adventures and experience all that life offers you
  5. Laugh often
  6. Be positive
  7. Learn from others – let bad experiences shape you as much as the good ones
  8. Don’t be in any kind of relationship that is a detriment to your own happiness
  9. Keep learning
  10. Never apologise for being you.

Point 10 is one I am beginning to take on board more. We recently went to the cinema to see ‘The Greatest Showman.’ If you haven’t seen it yet – GO! The main song has become a bit of a personal anthem! It’s called This is Me. The more I listen to the lyrics, the more chords are struck within me. I’ve hidden away so much because of how I feel about myself – “I’ve learned to be ashamed of all my scars, run away, they say, no-one will love you as you are.” That sums me up in so many ways. But it turns into a song that is about empowerment, taking strength from bad experiences and that we are all glorious in our own ways. So I’ll end the blog with a verse and chorus of the song that brings tears to my eyes but also gives me strength…check out the video on YouTube of Keala Settle singing the song in the audition room to get the film green lit…if that doesn’t make you cry, I don’t know what will!

“Another round of bullets hits my skin, well fire away, ‘cos today I won’t let the shame sink in. We are bursting through the barricades and reaching for the sun, we are warriors, yeah that’s what we’ve become.

I won’t let them break me down to dust, I know that there’s a place for us, for we are glorious.

When the sharpest words wanna cut me down, gonna send a flood, gonna drown them out. I am brave, I am bruised, I am who I’m meant to be…this is me.

Look out ‘cos here I come, and I’m marching on to the beat I drum, I’m not scared to be seen, I make no apologies….this is me.”

Happy Thursday.

#hairlesshannah

 

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Goodbye 2017

I’ve been sitting thinking about the past year today in all its glory; highs, lows and the many inbetweeny bits. It really has been one hell of a year!

I feel I’ve learnt a lot more about myself again this year and grown stronger in many ways. CBT has helped me greatly, I’ve learnt that it is okay to put yourself first sometimes without calling it selfish and that if you want to say no to things, that’s alright too. Self preservation is much higher on my list of priorities now, I have always been a people pleaser and a guilt feeler so this has been a hard one to master and continues to be a work in progress.

Last year I felt a totally loss of independence however, this year I have managed to get some back. A random conversation planted a small seed in my mind earlier in the year, to use my creative skills to a) give me something in which to channel the energy I have and b) to maybe earn some money from it. And that in turn became ‘Sunshine Makes and Bakes’ which has been a life saver in so many ways. I have loved making and baking and it really has given me a purpose.

However, my biggest achievement of 2017 has to be the publication on my first children’s  book. I didn’t think it would be out before the end of the year but it is and I haven’t quite come down from my little cloud of happiness yet! To see my words accompanied by my vision of illustrations and be able to hold it and put it amongst all the other books I love and cherish is just a dream come true. And on top of that, to see my book being read and going into people’s home is just mind-blowing! I’ve already received a few messages from total strangers who live with alopecia or have children who do, who have said how the book has helped them talk about the condition openly and how the book has brought them real happiness. That is my job done – hairless Hannah is happy!

Having said that, 2017 has been a horrendous year in terms of the loss of loved ones. Not only have we lost my dear Grandma and Auntie Pat, we have also said goodbye to several close family friends this year. It has struck me how lucky I have been in my 31 years to have known so many wonderful people and realise how much they have impacted my life. In terms of family, I have a relitively small one. Yet, my extended family is huge. Just days ago I was at a celebration of life of a family friend whom mum and dad met when they first started teaching. Regardless of the fact that Henry was 58 years older than me, he kept young and always engaged me in enthralling conversation, always paid a huge interest into my life, always made me feel special and loved – he, along with the others we have bid farewell to this year, will remain with me for the rest of my days as I carry with me and implement the lessons I have learnt from them into my daily life.

I am only making one resolution this year; take each day as it comes. I feel like looking forward too far and setting big goals only ends in failure and disappointment therefore, if I only take one day as it comes, celebrate all the little things and concentrate on taking steps forward, only good can happen…right?! I definitely am one to think New Year, New start…but in reality, when I wake up on January 1st, it’s just another day, no different to the day before. I put too much emphasis on time and dates and I must try to stop that. I will take with me the people, memories and things I want to from 2017 and leave behind the rest, it’s no good carrying that around with me when there’s so much more to gather up in 2018.

So, here’s to 2018, many more good days than bad and to health and happiness.

Happy New Year.

#hairlesshannah

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Happiness is….

What does happiness mean to you? Has your definition changed over the years?

I was with a friend at the weekend and we got to reminiscing about our school days and talking about what our old class mates were up to now (obviously we only know most of this via Facebook!). We talked about who was married and had children, who had what job and achieved certain things and then my friend said something that struck a chord – when we bump into people from our past, we ask them all these questions about their jobs, families etc but one question that is never asked is – are you happy? Because, as we know, we can edit our lives into the perfect picture of happiness for social media but we never truly know the ins and outs of what the true picture is.

It’s something I have never stood back and asked myself at any point in my life I don’t think. When I was in my late teens and early twenties I had a vision of what ‘happy’ looked like, but that wasn’t for then and there, it was always linked to my future. Moving into my own home, getting married, having children, going on adventurous holidays – all big dreams, big ideals of what happy was going to look like in my life. Now, I don’t dispute for one minute that these things do bring happiness, however, I spent so much time focussing on what my ideal, happy, future looked like, I am almost certain I lost sight of the little things that were happening day-to-day that brought me happiness.

Grand plans are a good thing and of course they bring with them happiness but I do think that sometimes, in striving for them the happiness gets forgotten. All these big things take time and planning and often involve stress and rather than embracing it and reminding ourselves – I’ve just bought a house or I’m planning my wedding, we think about the cost, the time, the little irritating bits and pieces that happen along the way and we focus on them rather than the big picture. We are all prone to it, I am too but I guess I am now more tuned in to the fact that we shouldn’t take these moments for granted. Yes we should have a moan and feel overwhelmed by the big bits but then we need to step back and think, wow I’m so lucky, I’ve worked really hard to achieve XYZ and I should be enjoying this!

I guess this realisation comes as you get older. And sometimes you only get this jolt of reality when something life changing happens to you. Because now, I can’t necessarily plan day-to-day let alone plan for the big chunks of happiness and therefore I find myself taking note of the smaller things, day to day that make me happy. In January, my cousin suggested that every night before we went to sleep, we should write in our phones something from the day that made us happy, no matter how small and then at the end of each month we would swap and read each other happiness diaries. It is so interesting to look back over the past ten months and see the things that have made both of us happy – family and friends feature highly, almost every day this is what we have written about. Not material things or planning for what is coming up. The here and now. Not material things (although bath bombs and bedding features highly!), not things that we have to save up for, the things that surround us every day. Sunsets, camping, dog walking, a funny thing that happened at work, trying out a new recipe and people liking it!

And that’s the difference between my twenties and thirties – planning for future happiness and finding happiness in the here and now. It isn’t always easy because some days are dire but with some practise, I’ve taught myself that in every day there is something good and something that makes you smile – even if it is a chocolate digestive whilst watching Neighbours!

So, your task now is to think of something that has made your day happy, note it down and when you look back at the end of the week, month or year, you’ll find that all those small things add up to a not so gloomy picture.

Happy Tuesday.

#hairlesshannah

 

Taking the positives from the negatives

I’ve been “training my brain” of late to focus on the positive things that happen day-to-day rather than dwelling on the negatives. Without thinking about it, we do tend to talk about the negative things that happen rather than all the good things – whether that’s for fear of irritating people with your happiness or for me, fear of people thinking that that means I am ‘a-okay.’ It’s true of many aspects of life – we talk more about our problems and issues relating to work, relationships, friendships etc rather than regaling in the things that are making us happy. Yes, of course we DO talk about the good, happy things but they tend to come after the things we need to get of our chest.

Typical conversation you may be involved in or overhear:

“Oh hi, so lovely to see you, how are you?”

“Oh, you know, I’m ok but my damn hips are causing me jip and my sleep is all over the place which means the kids are driving me insane and everything that *Rupert* says or does makes me want to scream!.”

“Oh I know exactly what you mean, I’m the same. There aren’t enough hours in the day to get everything done for everyone else, there’s never anytime for me and when there is it’s always interrupted.”

WHY DO WE DO THIS? Don’t get me wrong, I totally fall into this category a lot but I do try to make a conscious effort to not be like this because it’s something that drives me insane. Negativity breeds negativity and that is only going to make you feel worse. I am hands up a total advocate of talking and moaning every once in a while, after all it’s something us women would all get an A* in and that’s why we aren’t all totally insane because it’s a way to work through things. What I’m really talking about here is how important it is to always try and see the positives in things, I truly believe, no matter what situation you are in, there is always something you can take from it. You may not see it, or want to see it at the time but if you look closely enough, you’ll find it.

I’m going through a patch at the moment where I feel CBT is nonsense and a waste of my time. I seem to be coming across every single bad report or experience people have had about how it doesn’t help ME sufferers, I’m not looking for them, they just find me on the internet.  Therefore this influenced me for a few days with me thinking, see, you’re right Hannah – it’s rubbish. But then I pop my level head on and think about my thoughts and realise that actually it’s not that it isn’t working, it’s just that I’m not giving it my all because I’m scared that it might not work. How ridiculous is that?! It will be a hard slog, it will take time to notice a difference and that’s okay, no one built Rome in a day.

So, over the last week or so I’ve started to consciously think about the positives that have come from the last two years and I have been totally flabbergasted by how many I could come up with. I didn’t honestly think I’d come up with many because I am so aware of how many negatives I’ve taken from it and how it’s impacted my life in a bad way, so to turn it on its head and look at it from a different view has been liberating. If I come up with a positive I can often follow it with something negative because I worry about others i.e. the strain it must put on my family for having me home for so long BUT in this blog I’m not going to mention anything negative…so here goes!

  1. Spending time with my family that I wouldn’t have done before. Being back at home with mum, dad and Jack has been lovely. Going back in time almost to all being round the dinner table chatting, laughing, debating – I can’t explain how much I will treasure that. Little trips out, celebrating birthdays together – I love it. We are so lucky that we are such a close family and although we drive eachother nuts at times, we love eachother and would do anything at any time for one another and that’s very special.
  2. Being at home whilst Jack trained and became a fully fledged teacher. Being able to offer help, advice and support (which mainly was received well!) has been amazing. I would of course have been involved anyway but nowhere near to the extent I’ve been able to and as always, it’s just made me so proud of him.
  3. Being around to watch my friends have babies, getting engaged, moving homes and entering the next stages of their lives; you can’t put a price on that.
  4. Discovering my love of writing. My blog has been a saviour for me and I wouldn’t have discovered that without this situation I find myself in. Writing manuscripts for books and finding out about the publishing world has been so exciting, as cheesy as it sounds, it’s been a dream come true.
  5. Having the time to spend on my other interests like baking and crafts and developing a little business (website to follow soon – eek!). Again, something I’d never have had time for in teaching.
  6. Having time to spend with people I possibly wouldn’t have before and realising just how lucky I am to be surrounded by people who are so talented and are willing to use their talents and time in order to help and support me.
  7. Realising that actually, you really do work to live and not live to work. Many things have been put into perspective for me, the stress and time I put into my job – something I don’t regret because I love teaching and care so much for the children but at times this has been to my own detriment and ultimately, it’s not worth it. Recognising that sometimes you have to put yourself first has been a hard one to get my head around but I’m working on it.
  8. I’ve had a lot of time to think about how society works and how I feel and react to certain aspects of life. I’ve always tried to see things from different perspectives but now that I’ve been in a minority group by not having hair, I’ve been able to see how cruel people can be and in turn it’s made me more empathetic and aware of people’s feelings.
  9. Just because you’re having a bad day doesn’t mean you’ve got a bad life. This has been a revelation for me recently. I’ve had days where I have genuinely convinced myself that I 100% hate my life and hate isn’t a word I’d use lightly. I looked back in my diaries yesterday and I have written this soooo many times. But actually, I don’t. How could I when I’m surrounded by so many wonderful people and can still do so many things? My life has changed dramatically and isn’t what it used to be by any stretch of the imagination but I have to learn that that’s alright. My cousin in Canada came up with such a wonderful idea at the start of the year, to keep a note of something good that had happened every day that made us smile or lifted our spirits and at the end of each month we swap our mini diaries so we can keep up to date with each other’s lives. I have loved it – we are much closer because of it and it really does mean that before you go to sleep you are (hopefully) focused on something good rather than bad.
  10. I’ve discovered audio books and podcasts – small but significant discoveries!
  11. I’ve actually…wait for it…become a bit of a dog person! Mum and dad signing up to Barking Mad was something I was SO nervous about because we’ve never had pets and I have always been wary of dogs but wow – I now understand how incredible pet therapy is. The calming influence they have has made such a difference to me and I miss them when we don’t have one – I haven’t gone so far as picking up poo yet but you never know!
  12. *cheesy point alert* The world we live in is so beautiful. I have always appreciated nature but on a low-level but when you’re stuck inside a lot of the time, you really get the time to look at things. The clouds, the seasons, plants, flowers…I guess I just appreciate it all more and I have loved spending time with Dad being geeks and learning about photography and capturing those things that weren’t necessarily on my radar before.

And there you have it, my positives from my negative – not too shabby if you ask me. I wonder what you would come up with if you spent some time thinking about it. That’s your challenge, next time you see someone and they ask how you are – start with a positive response and move on to the less positive later on, it honestly makes such a difference. And anyway, if you leave the moans and groans until a bit later, chances are the kettle will have boiled and biscuits will be out and we all know a moan and groan is made better with biscuits and a cuppa…or in my case a Ribena!

#hairlesshannah

PS: September is coming round again so get those fun hats back out and let’s raise some more awareness!

Dream a little dream

If you take time to stop and think about how your brain controls everything you do, how it generates your thoughts and how it governs our emotions, thoughts, actions…basically everything we do, it can become quite overwhelming.

I am learning that my brain is quite an interesting little fella! It generates thoughts and worries that I can’t control – it’s like a beast that is refusing to be tamed! However, I am trying and through the help of CBT, I’m sure I will whip it into shape. I have found it so interesting dissecting my thoughts and learning about the influences that impact me and therefore enable my unhelpful thinking patterns. We/I often react to a situation by responding to how it makes me/us feel and that then leads to me/us behaving in certain ways and reacting to it on a physical level i.e. something has made me/us feel stressed so in my case, I can’t sleep and this leads to me feeling fatigued.

So if I try to consciously think about something it might start to change my behaviour, emotions and reactions which will mean that my physical and emotional responses will also change. The way it is described in the book I am reading sums it all up perfectly; The way we think about something will determine how we feel, and the way we feel will often determine what we do.  (‘Overcoming chronic fatigue’ by Mary Burgess.)

It is a really tough thing to unpick. I am keeping an unhelpful though pattern log at the moment where I have to dissect my thoughts. Thinking about the various aspects of that single thought is hard. Seeing things broken down and written in black and white really brings home the truth behind how I’m feeling and how it is impacting me on a daily basis. However, even though it’s a hard process, it is helping me to challenge the way I react and respond to my thoughts/worries. Don’t get me wrong, at the moment it really isn’t changing the way I respond to certain things but it is in the front of my mind and I am noticing how after I have these thoughts, I dissect them a little and challenge them and it helps me to box them up and shelve them rather than dwell as much as I have been.

Our brains are such intricate organs and one that I will never fully understand! Sleep is still a bloody nightmare for me at the moment. I simply cannot fathom how someone who is SO fatigued just can’t sleep. Over the last three weeks the most sleep I’ve had in a 24 hour period of 5.5 hours. I am sticking to my CBT targets and setting an alarm in the day for a maximum 2 hour nap although I could sleep longer – why is that?! Why could I sleep in the day with no issue yet when it comes to night-time, I just can’t get to sleep? And when I do, I will wake up every 30 minutes to an hour and then remain awake for anything up to two hours?! I just don’t understand and although I know so many ME sufferers have this problem – insomnia and painsomnia – I can’t find any research or explanation for it?

I have always been a vivid dreamer – always in colour and I can often wake up remembering them. But over the last few months – really starting when I was taking melatonin – my dreams have become stunningly vivid. I have a least one dream that I wake up from a night that feels like real life and affects me on an emotional and physical level. Some are totally bizarre although I can relate them to something I may have watched on TV or read about but some are quite clearly linked to my subconscious and they are the ones that are having the biggest impact on me. They are so cruel, it’s like my brain is torturing me on yet another level and although the dreams are wonderful to “live” through at the time, they are a flippin’ hateful things to wake up from because I come back down to Earth with an almighty thwack!

I’ll give you some examples! Here are two of my more bizarre dreams of late!

  1. I was the right hand lady to the President of the United States who just happened to be Denzel Washington – I do love that man! He was in terrible danger and I had to defend him Jack Bauer style and I have to say, I was kick ass! The dream ended with him shaking my hand and thanking me and I replied, “It has been an honour Sir.” Ha ha ha I mean, this is obviously a dream concocted by someone who loves ’24’ and would love to be a real life super hero!
  2.  Tom Jones was my friend and he was about to do a concert but had very swiftly been struck with dementia so couldn’t remember any of his song lyrics! Mum was hysterically upset because no-one would ever get to watch the genius of Tom in concert again and the dream ended with me trying to find a cure for dementia.

And then we come onto my more upsetting dreams to wake from!

  1. The marriage dream. I’ve had several dreams where I am either getting ready for my wedding day or living my wedding day. I can never see the face of the man but I just know I can feel how happy I am. The dress, flowers, party – everything – is always beautiful and the happiness overwhelming.
  2. The engagement dream. Again, where I can literally feel how happy I am and how in love and the dream is based around telling people we are engaged and it’s all jolly and wonderful!
  3. The baby dream. I am either pregnant or have a little baby and again, totally in love and totally happy. The most recent and interesting dream linked to this is one I had last week; I was a single mum, pregnant and had consciously decided to use a sperm donor because I hadn’t found the right man but knew I wanted to be a mum! I had a C-Section and had a little girl!

These dreams are tough ones because they are all linked to my real life dreams – I would love to be in a happy relationship and have my own family unit and if any of you know me, I have always wanted to be a mum. These are all things that for now, are way out of my reach and are pipe dreams quite literally. So to wake up feeling so deeply the happiness and love and then realise it isn’t true is hard and it takes me a while to shake it and separate it from my actual reality.

I love a good dream and what I am trying to say here is how powerful our brains are. Even in our sleep they manage to formulate our conscious and sub-conscious thoughts, hopes and wishes and bring them to life. It brings me back to the fact that our brains are equally a part of our body as a leg or arm and need to be cared for in the same way. We may not be able to see the hurt and damage that our brains are dealing with but that doesn’t mean that it’s any lesser than anything else that needs care and attention.

So, as always, remember that not everyone’s demons are visible, they can’t be fixed quickly, people can’t just snap out of it and all they need is a shoulder to cry on, a listening ear and a good old laugh.

Happy Friday everyone.

#hairlesshannah

Worry less, smile more

.Wouldn’t it be amazing if there was an off switch for all our worries? If you’re like me you will love a good quote and many a good quote base themselves around being positive, living your life to the full, worrying less and smiling more. But sometimes it doesn’t matter how much we try to convince ourselves of this, worries just can’t be magicked away that easily.

One of my targets from CBT has been to write in a worry diary every night, 3-4 hours before sleep, the aim being to oust the worries from my mind, write down steps I can take to begin to overcome them, close the book and hopefully that’s expelled them or at least calmed them from my mind for the night to come. I get the concept, I really do, but in some ways I’ve found that all this has done is emphasise my worries.

Now, I have always been a worrier, it’s been a long running family joke for as long as I can remember. I get it from my Grandma although I stand my ground on the fact that there is no- one in the world who worried more than she did! I do recognise this trait in myself and I do believe I have got better with age. However, although I have got better, I will now totally contradict myself and say in a way I have got worse because although I don’t worry about as much, the things I do worry about, I worry about BIG time. I definitely over think more and sometimes my worries are totally and utterly ridiculous and I will find myself researching how I would survive in a falling lift situation!

As we get older we become so much more susceptible and sensitive to the world around us. It astounds me when I see children running, playing, socialising fearlessly, not worrying about falling or hurting themselves, worrying whether someone is being mean or isn’t who they say they are – when does this change and why? I had the same upbringing as my brother yet he doesn’t worry to the same extent as I do – so is it a gender thing? Is it nature or nurture? I don’t know.

The worries I live with on a daily basis now are obviously different to those I had a few years back – the money worries I used to think I had were nothing compared to those I have now! But worry is all relative. My money worries are no more or less important than anyone else’s because they will be just as stressful depending on different scenarios. Those with children or new homes or a broken boiler or a flat tyre or a lost wallet – all worthy causes for worry. But referring to my earlier CBT task, the worries I found myself writing down daily didn’t seem to have any next step scenarios. They all had more long-term outcomes so seeing them written down in black and white over and over every day  oddly enough made me worry more! Oh Hannah Green! So long story short I’ve stopped writing my daily worry diary until I can ask some questions about how I can approach it differently…I don’t want to fail my targets…yes, I turned up to my last session feeling like a naughty school girl because I’d not met all my targets and honestly, at the age of 31 I felt so bad, like a detention was waiting for me! My lovely therapist laughed at me when I told her and just said that was my problem, I worry about things I shouldn’t worry about….but honestly, that’s me and I know that has to change in order for a healthier mindset.

Worry can be irrational – I mean, my biggest fear, well one of them, is bears. Not teddy bears but the kind that can run, swim, climb trees…you ain’t getting away from one of those bastads if you disturb its cubs – have you even see The Revenant?! Yet I have learnt that trying to squash someones worries isn’t helpful, you may be trying to help them, goodness knows I’m sure I’ve done it so many times but the best way to help is to just listen, offer a hug and tissues to wipe the inevitable tears and then throw in a good old quote for good measure – finishing with a laugh always helps!

Worry is something that will never be extinct in our world. New fears and worries occur every minute of every day for people and sometimes they’ll be worries they’d never dreamt of. Watching the news over the past few months and witnessing the horror of the various terror attacks across the world but mainly in London and Manchester, in places and situations so close to my heart, it’s unthinkable how many people will have been affected by the atrocities. So many of the survivors, the emergency services, news crews and witnesses will be now living with the effects for days, months and years to come. They will be experiencing worries and fears that hadn’t entered their minds before, yet for some they will now be devouring their existence. However, when I’ve read reports and watched interviews I am amazed, encouraged and proud to see how many of them approach these fears by fighting, not taking flight. Facing their fears head on and getting back to their daily lives – going to concerts, returning to Borough Market, walking over London’s bridges.

This is not how everyone will respond to fear and worry, fight and flight are both two very valid responses – I’ve done both at varying points in my life and neither were wrong choices. What I mean is, the human race is amazing. We support each other in the choices we make and help each other take steps forward to reach our end goals, worry will always be there in one form or another yet it won’t beat us. It won’t beat me.

And now comes the toughest part of this blog – what worry quote to end on, there are just too many good ones to choose from hahaha!

 

Have a fab week fellow worriers…or should that be warriors?!

#hairlesshannah

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The reality behind the photo

It’s been a while since I wrote about how I’m coping with having an invisible illness. I’ve now been formally diagnosed with ME/CFS which was both a relief and a worry. A relief because I can now answer questions definitively about what is “wrong” but also a fear because part of me really didn’t want it to be ME. I wanted it to be something curable, treatable…for someone to be able to ‘fix’ me.

I’ve been using social media much more to promote my blog lately and as we all know, social media portrays an image of people that doesn’t always reflect the honesty of your reality. Some people that I follow who have ME are truly brave and use their accounts to show the reality of daily life living with ME, but I don’t. I guess I don’t because I try to keep as many aspects of my life positive and happy in order to keep myself as pepped up as possible. There is nothing wrong with either but my option does then cause problems. By posting a photo that shows me out, smiling, laughing, with people, posting positive etc etc it would appear there’s nothing wrong with me. I’m not opposed to the odd selfie but I also don’t always feel comfortable to show reality through them, my space for being honest is here in my writing.

But what I want to write about in this post is the story behind the social media photos. Photos give you a snap shot. Take for example the photo below.

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This was taken on Friday evening at a surprise party for my ex head teacher and friend. I was picked up at 7pm…well 6.45 as Olivia was EARLY!…the party started at 8pm and my Dad picked me up at 9.30. In the photo I am laughing, surrounded by some of my loveliest friends, drink in hand, having a ball. And I was. In that moment I was happy, I was with people who accept me for who I am, support me through what I’m going through and understand my limitations. To many people though they will see this photo and possibly think the following:

  • Hannah is out, she tells us she’s in bed by 9pm
  • Hannah is dressed up and out at night when she tells us she struggles with noise and busy places
  • Hannah tells us she is in constant pain and can’t do very much let alone go out with friends

Now, I will tell you the reality behind that photo. I haven’t been out in the evening in a party situation since July last year and on very few occasions have been out for a meal in the evenings, so Friday was a big deal. I was anxious about going and I spent most of the afternoon trying to nap to have enough spoons to cope and calming myself down in anticipation. When we arrived it was much louder than I’d imagined it would be. I put my ear plugs in straight away but soon realised that because it was so loud, music plus ear plugs meant I couldn’t hear a word anyone was saying! So I spent the entirety of the few hours I was there with an increasingly banging headache and fuzzy head. I loved those few hours, but I also felt so self-conscious. I was literally the only bald person in the room, I felt like the light was catching my head or that people were staring at me and I certainly didn’t want to be in any photos. I felt hideous, I didn’t feel feminine, I felt ugly and awful and the worst I’ve ever felt about myself. So that photo was me putting on the biggest show of my life in a way – I was happy but would have been happier to not have been captured in that moment. By the time Dad collected me I was done. My legs, knees and back were throbbing, my ears were ringing to the extent I felt like I was shouting when talking to him in the car on the way home and my head was pounding. As I lay in bed that night it was like I was drunk (I only had diet coke!) my head was whirring, my legs cramping and having spasms, my knees seizing. I finally fell asleep at around 8am. That is the reality behind what it took for me to be at that party for two and a half hours.

I’m 31 in a few weeks. I should have been there with my friends on Friday until 1am dancing, drinking a Malibu and coke and being the one snapping the photos like I have always been known to do. I should be looking back on my 30th year and have it littered with good memories of adventures, holidays, milestones and happy times. Instead, it’s a year of appointments, medications, blood tests and sleep. Of course I have had happy times in the year but I think you know what I mean. I feel like a shadow of my former self and I find myself needing to defend how I feel because of photos like the one I’ve talked about. I refuse to not post those photos because otherwise I will not have any memory of these years, in effect I will be missing from these years of my life. There’s a campaign called ‘Millions Missing’ that promotes ME. It talks about how people who have ME are missing from their jobs, social lives, holidays, families..we can’t participate in life in the way we used to but we are still here, we still make the most of what we can when we can. Last year they organised a protest in Whitehall and various other places across the world where people left pairs of shoes to demonstrate how they were missing from their lives because of ME and protesting for the fact that more needs to be done in terms of research and greater funding needed from the government to help people understand the illness more and treat it and it’s sufferers better and with more care and consideration.

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I have been talking to a dear friend this afternoon about this but also about mental health and the similarities that we share. Mental health is also an invisible illness. Just because we had a good day or hour or five minutes yesterday, doesn’t mean we will today or tomorrow or next week. Mental health and ME are fluctuating conditions with no rhyme or reason, no straight path or definitive ending. They are illnesses that need understanding and for people to simply say, “I believe you.”

I find it hard when I see people who say, “You’re looking so well,” or “You’re looking so much better than when I saw you last,” because it makes me feel like a fraud. I feel like I need to defend myself and explain that it’s a hidden illness and looks can be deceiving. If I could wear a wig and pop on some make up I would look totally and utterly fine but I’m not. I feel embarrassed to have to then explain that I’m not actually feeling great but, “thank you for saying I’m looking good.” I know whole heartily that these people are probably being really genuine and kind –  it’s my issue not there’s, I should be thrilled to be told I’m looking well. But because of my personality, I worry that they think I’ve been having them on. My positive attitude and positive mask can work against me in that way because people come to believe it and don’t question it. I saw a friend the other day and we talked about how I am, the loss of my nose hair (!) and everything else in-between but when I saw her again on Friday night she said something that made me smile from inside out. She said that when she got in the car to drive away the other day, she thought about me and what we’d talked about but then she wanted me to know she thought, Hannah is still the same as she’s always been to me. Wicked sense of humour, same old laugh and smile and sense of caring for everyone. To hear that being said so genuinely meant so much, it wasn’t focused on how I looked, or all the changes in me that have occurred, it was a comment about me as Hannah.

Living with an invisible illness is teaching me so much and I’m sure there’s more to come. It’s such a debilitating condition that is stripping me of so much of what I consider my identity. And there’s no end in sight especially when the only recommended “treatment” of a course of CBT is a waiting period of 4-6 months! So, I will continue to try to test different ways to cope and pace myself, I will deal with the ups and downs, I will continue to try and like myself and my appearance, I will try and start to accept that I can’t drive or have much independence and I will continue to strive to stay positive.

It’s a lonely place in this little arena, my bedroom and little writing area are my safe place but they are also lonely. It accentuates the fact that I’m not in a busy classroom or planning for nights and days or even weekends out. But it means that when I do see my friends or I do go out with my family that I don’t take it for granted. I savour every moment even though it may hurt and will inevitably wipe me out for hours, days or nights after. Because at the end of the day, whether I like it or not, this is my life and I will still only get one shot at it. If and when I get better there won’t be a rewind button.

So as with so many of these blog posts, I leave you with this thought: many people you know or will meet may have so much going on in their lives that isn’t visible to you. So be kind and patient and understanding. Give them time, give them a smile and possibly some chocolate…every little helps!!

See you Friday.

#hairlesshannah