Alopecia Awareness Month is here again

September is here again which means it’s alopecia awareness month!

This year feels very different to last. I did a lot to raise awareness last year: fun hat Friday events both here and in Dubai, I spoke at my old secondary school and posted every day on social media…but this year, for one reason or another I haven’t prepared or sorted anything.

Last year I found it almost easy to raise awareness, I didn’t mind sharing my story or taking bald selfies but this year I feel differently. Now, don’t get me wrong, I will always want to raise awareness for alopecia but my own self confidence has plummeted over recent weeks resulting in me feeling less comfortable in my bald skin than I have before.

Even the slightest glimpse of myself that I might catch in the mirror or reflection in a window makes me well up. I’m avoiding mirrors again and feel very un-accepting and feel resentful of everything my mind and body is. As always my smile masks a million thoughts, feelings and daily battles – to do with alopecia and much more and it does make me sad that I feel this way about myself because once you lose that sense of self-worth it makes everything else very difficult. However, I hadn’t really thought much about it until I was going through one of my ‘unhelpful thought pattern’ diaries with my CBT therapist where I broached this topic. They are normal, daily thoughts I have about myself but I was brave and decided to share that with her and her response was shocking to me. She got quite teary at the language I used to describe myself and crossed out some of my ‘evidence’ to support my thoughts! This is what brought everything crashing down to Earth for me, seeing someone else’s response to my ingrained self worth.

Now I’m not writing this blog for sympathy or to get nice comments – far from it. I almost didn’t post it because it because it’s so personal but I do feel that it’s an important blog to put out there because alopecia and ME/CFS doesn’t follow a linear pattern (I’m desperately avoiding the word ‘journey’ or ‘roller coaster’ here!). People say time is a healer and generally I do believe this but at the moment, a year down the line, in this circumstance it’s not true.

I am obviously writing this from my experience but my feeling about alopecia robbing me of my femininity is stronger than ever. I have always been my own worst critic but I always said my best features were my hair and eyes – and alopecia has taken that from me, to the point that if asked, I genuinely wouldn’t be able to tell you one physical part of me that I like. I wasn’t going to write about this but hey, I’ve been open in most other aspects of my life so here goes!

Weight has always been an issue for me, I am your stereotypical yoyoer. I first joined Weight Watchers when I was 16 so in reality my weight issues have been going on for over half of my life. Just before I became ill though I had had strong words with myself, took advantage of the pool on my roof, invested in a cross trainer and signed up to The Body Coach scheme. I lost just over a stone and was feeling great, I had a grip on myself and for the first time in years, felt great. But as it seems to go with me, this is when ME took a hold as did the various concoctions of drugs, many of them having the side effect of weight gain which to be perfectly honest was/is a right shitter because if you’re asleep or immobile most of the time and minimal exercise causes excruciating pain, the only result is going to be the enormous growth of Hannah Green! I know it’s happened, I can feel it, and when I dare to, I can see it. So the combination of this plus being bald, still not being able to wear make up or hats or wigs – you can see maybe why I feel so yuck – and that’s putting it lightly.

There are so many people who I’ve connected with who have ME that are experiencing the same as me in terms of drugs and weight gain and feel the cruelty as deeply as I do. It’s just an added thing to make you feel rubbish but also, as we know, weight gain will impact your joints and muscles meaning increased pain and decreased progress, it’s such a vicious cycle. I feel less and less inclined to go out, see people, do anything. I’m not giving into this by any means but I am definitely having more days where I could easily stay in bed – partly because I’m low and mainly because I am just flat-out exhausted. However, this is going to be the next area to tackle in CBT so hopefully I’ll see changes or learn coping mechanisms soon.

Haha I’ve just had a little read back – what a cheery blog this is! Seriously, I do manage to yank myself out of bed every day, put the smile on (most of the time) and get on with it because there isn’t really any other option in my eyes.

So, bringing this full circle, this year I feel less confident in my alopecia skin, I would feel a fraud using hashtags like #baldisbeautiful because for me, right now, it’s not true. Of course I will still be doing little bits and bobs to raise awareness however, in a few months I will be able to share something very exciting with you that I’ve been working on and that will be my contribution to this years alopecia awareness.

So, my little reminder to myself and to other people is to remember that everyone is fighting a battle that may not be visible so don’t pass judgement. Just be kind.

Happy alopecia awareness month.

#hairlesshannah

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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!

A day in the life of an alopecian

 

My morning routine is so much simpler – no washing, drying, styling my hair, just a little buzz with the razor to ensure the bits that still grow keep in time with the bits that don’t. I’ve got used to shaving my head now but I still dislike doing it. Every day I hope to see that the hair on the top has started growing so I don’t have to shave the rest…one day it’ll happen, everything in it’s own time I remind myself.

I make myself look in the mirror, just for a few seconds to remind myself that this is who I am and that’s okay. It’s funny, I think people around me are more accepting of my baldness than I am. That’s how they see me now and that’s how they love me, I just wish I could do the same for myself.

I’m going through a phase at the moment where I am desperately missing my eyelashes. Partly because the pollen count has been high and my eyes, with no barriers, have suffered a lot this year. But mainly because I miss putting on mascara! I loved wearing mascara – as well as eyebrows framing our faces, there’s something about long lashes that make eyes prettier. I think one day I will have to spend some proper time trying to conquer falsies but for now, the naked is eye is what it is!

Today I am venturing out, some days I constantly think people are staring, some days I couldn’t care less but mostly I feel a constant shadow of self-consciousness. I am very aware that I am more than likely the only bald woman in the vicinity and I stick out like a sore thumb. Some people offer sympathetic smiles, some avoid eye contact and others can’t help but stare gormlessly. It’s been a while since comments have been passed but today I’ve had two encounters.

  1. In the doctor’s surgery the receptionist assumes I have cancer and asks how my treatment is going. Now, normally in this situation I’m happy to explain I don’t have cancer, I have alopecia but today, in this situation, in this environment, I feel guilty and uncomfortable and I simply reply with, “it’s fine thanks.” WHY?! I then feel even worse because I’ve basically let that woman think I am having treatment and the people in the line behind me now think the same and I’m faced with four other sympathetic smiles and oh dear god, please let the ground open up. Sometimes I just don’t have the strength to explain. I know that’s no excuse but that’s how it is. I want the moment to pass as quickly as possible with as few words as possible.
  2. I hear a shout…”hahahaha that lady hasn’t got any hair!!” A nine-year old girl sitting in a restaurant with her family decides she can vocalise her amusement at my appearance. Again, normally with children I let if go over my head because, they are children. But today it hits me like a ten ton truck. I stop and stare at her with my best teacher stare which makes her look down and cower in her seat. Her mum looks and me and looks away instantly – with embarrassment? – and her dad pulls her down in her chair and mutters something out of my ear shot. I stood there for several seconds and then walked on, tears in my eyes as though someone has just punched me in the gut. As I walk away I regret instantly that I didn’t approach that child and her family to educate them. Ask the parents to explain to their children, who are old enough to know better, why some people a) don’t have hair, b) look different and c) why we shouldn’t publicly humiliate those people because of their differences. And tell that girl, her words have hurt me, a stranger who she won’t think about ever again but that I will continue to think about her for days to come because her words and laughter struck a chord deep down that hurts like hell. That she needs to think before she speaks and be kinder to people.

Like I say, thankfully these interactions don’t happen very often – thank goodness. It still stuns me how hair can have such an impact on me, my self esteem, confidence…everything. I am not okay with being bald, I am not okay with it at all. Every single day I long for my hair and it scares me to allow the thought that it may never come back. I am good at dusting myself down and moving on because there is so much else going on in the world, my hair is not a biggy.

I walked past LUSH as well today – they had a new product in the window, a cubed product on a lolly stick…of course I went to take a closer look. Hair oil on a stick – wow! I loved a good hair oil treatment but wait, I don’t have hair so I can’t use that. Damn. Luckily I can use a bath bomb – every cloud eh?! There was an article on FaceBook today about a guy who had a hair piece attached and he was SO excited to have hair again after being bald. He spent £90 in the supermarket on products and he couldn’t have cared less! He was saying loudly down the ailes, “look I’m buying shampoo, SHAMPOO, for my new HAIR!” What a legend – it made me smile from ear to ear.

These are the things that catch me unaware and it’s funny because conversations that people apologise for like complaining about a bad hair day or grey hairs etc, they don’t touch me. They don’t bother me at all. Maybe it’s because these conversations happen with friends and they are natural, normal conversations for girls to have together and I’m just happy to be involved in them. I find that I can make jokes about my baldness in these stations…I don’t have the issue of grey hairs etc!  What I do miss is the getting ready to go somewhere and brushing my hair or playing with a strand whilst watching TV…like I say, the little things.

Today the weather is cooler and I miss being able to wear a hat or having my hair clipped back but I have to admit, over the last month I experienced for the first time a sense of not missing my hair. Albeit fleetingly, but in the heat we’ve had and with no air con, the thought of drying and styling my hair – no thanks! But as Dad said, I think I’d quickly get over that if I meant I had my hair back!

As I get ready for bed and moisturise my face I think of silly memes that go around about how far up do bald people moisturise because, where does your forehead end?! Bloody stupid meme if you ask me! I run my hand over my head sometimes, almost as if I am apologising to it for hating it so much and reminding myself that my bald head is a part of me that I care about and maybe, just maybe if I try to accept it and love it more, it will reward me with some regrowth. Maybe. Hopefully.

And then I get into bed, thankful that the stress and dread of hair on the pillow in the mornings is gone but still after all this time, finding the feel of a pillow on my head is still strange and prickly. As I turn over onto my side I will occasionally flick my head like I used to, to ensure my hair is out of my face….phantom hair – who knew that was even a thing?! And then I dream, and coming to think of it now as I write this, I have never been bald in my dreams. I always have hair…a dream is a wish your heart makes.

Happy Sunday all,

#hairlesshannah

 

 

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

A very spoonie-fied blog

I’m sorry I’ve been absent for a while – well, almost a month now. There is no real excuse, especially when I know how writing helps me, but I just haven’t had the urge to write, I’ve had a slump and I thought that rather than force out blog posts that I didn’t really believe in, I’d stop. Pause. Take stock and tell myself it’s okay to take a break and come back as and when it felt right.

I am disappointed in myself that the month of May has been the time for this period of nothingness because it’s an important month for ME/CFS. May is ME awareness month as well as awareness for many other hidden illnesses. I’ve watched and followed eagerly how my little spoonie online community have raised awareness and done so much for the cause. Next year I will do more but for this year, all I can offer is this blog post.

I’ll start with a little fun fact; May 12th was Florence Nightingales birthday and it is suggested that she was one of the earliest sufferers of ME.  From 1857 she was often disabled by ill-health and spent much of her time bed bound; she is now considered a kind of patron saint for this under studied illness and this is why May 12th is used as a day for awareness. How about that eh?!

I then thought I would recap the main facts about ME, so I have used the main websites that I find useful and informative to provide you with the following:

The National Institute for Health and Care Excellence (NICE) provides three levels of severity for ME: mild, moderate and severe. This is how they explain them:

  • People with mild CFS/M.E. are mobile, can care for themselves and can do light domestic tasks with difficulty. Most are still working or in education, but to do this they have probably stopped all leisure and social pursuits. They often take days off, or use the weekend to cope with the rest of the week.
  • People with moderate CFS/M.E. have reduced mobility and are restricted in all activities of daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities. They have usually stopped work, school or college and need rest periods, often sleeping in the afternoon for one or two hours. Their sleep at night is generally poor quality and disturbed.
  • People with severe CFS/M.E. are unable to do any activity for themselves, or can carry out minimal daily tasks only (such as face washing, cleaning teeth). They have severe cognitive difficulties and depend on a wheelchair for mobility. They are often unable to leave the house, or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed, and are often extremely sensitive to light and noise.

I come under moderate. I won’t go on about my personal experience because I feel I’ve done that enough in previous blogs. However, progress has been made in that the 4-6 month wait for CBT has been destroyed and I have already had my first two sessions. Now, I know there is much debate about the usefulness and effectiveness of CBT for ME patients and I must admit, initially I was wary. But you know what? This is the only thing, the only offer of help I’ve had from the NHS so I am grasping it with both hands. I’ve gone into it with an open mind but also with open eyes. Luckily I made an immediate connection with the therapist and I trust her – both a bonus when you consider all the bad luck I’ve had over the past 20 months! We have set targets together to try to help me with my sleep – not working yet and as she predicted have made things worse before they hopefully get better. I like her because she is honest. There’s no BS, it might work for me, it might not but with everything crossed it could improve on what I live with daily and that’s enough for me thank you very much!

  • ME is a chronic illness which means it is long-lasting with no cure or guaranteed treatment.
  • ME is a physical disorder – having ME is NOT a state of mind and there is real scientific proof for this.

Life with ME has made me reevaluate everything about myself and my life, I guess a life changing illness will do that to you. It’s a terribly lonely illness. Yes I am surrounded daily by my wonderful family and I have constant contact with friends but I don’t have that connection with people anymore. I don’t have work banter, I don’t have social banter or random chats with people you may see when you’re simply out and about. I spend A LOT of time alone, sleeping, thinking…and that is lonely. It’s isolating and it makes daily life tough to face.

Raising awareness of illnesses like ME is so very important. Even doctors don’t know very much about them and patients – including me – often have to educate their GPs and specialists about possible medications, treatments and symptoms. It’s a frustrating situation that can be made easier by more people being educated and therefore having an understanding of what sufferers are living with on a daily basis.

Thank you for reading, thank you for baring with me and thank you for your continued support.

Have a lovely weekend.

#hairlesshannah

 

A look back at my 30th year!

I have to be honest, I wasn’t going to publish a blog today because I just haven’t had the spoons or inclination to write since last week. But, I thought: no, Hannah, sort yourself out, do something for your blog you lazy (!) girl. But I’m really not joking when I say I’ve been avoiding writing, it’s been a real up and down week, however, on Friday we had a phone call that we are now classing as, ‘a positive turning point!’ Kings rang and said a CBT appointment had come up for Monday – yesterday – and as I insert this text now, I can safely say it’s been a positive turn of events. The lady that will be doing my CBT with me is so lovely, down to earth, empathetic, sympathetic, knowledgeable, hopeful and professional – winner. But I will go into more detail another time!

This year has had some major lows but some equally lovely, lovely memories made with some truly special human beings. I started my 30th year on the planet being detained in Dubai airport whilst my darling brother used Eurovision results to try to gee me up (a particular low point, if not the lowest!).  I’ve spent many an hour baking, writing children’s books and continuing this blog. The love and support I’ve received has been overwhelming at times and keeps me writing and having a purpose, so thank you. I have loved having friends to visit me, visiting them on good days and catching up with my two Dubai sisters at Christmas. Watching little Mason grow and change and spotting buses as they go past our house on his visits has been a particular favourite too! I will treasure the moments I spent with Grandma and giving her the most beautiful send off. I’ll never forget giving mum the biggest surprise of her life for her 60th when Uncle Chris came over from Canada or chair dancing at our joint birthday bash and watching on as mum performed her now infamous dance to Uptown Funk! Watching dad being serenaded by the waiters at The Cheesecake Factory in Dubai for his 60th was hilarious and one of my favourite days out was at Friends Fest with the best brother in the world and his equally amazing girlfriend. Having several events which raised money and awareness for Alopecia UK has made me proud and having a few nights away in Somerset with my lasagne making queen Claire was a real achievement and worth every second. Going to two weddings, one of two Dubai lovelies and the second being a family one – both treasured memories. I’ve loved being chauffeured around by ma and pa who have just been beyond incredible with their love and support and constant encouragement to keep going. Spending endless hours being lovingly supported by friends I could only wish everyone knew have also given me sunshine. And of course there have been so many other things that have made me smile and kept my spirits high but I can’t go on and on as it defies the point of this short blog!

So, for now, I will dodge the word count for this week and simply leave you with some of my personal favourite photo high lights of my 30th year. Enjoy!

#hairlesshannah