Introducing Sunshine Makes & Bakes

I am very excited to finally be able to let you in on something I’ve been working on! If this is your first time reading my blog, let me fill you in on my story so far.

My name is Hannah, 31 years old and I have both ME/CFS and alopecia. I was living and working in Dubai as a primary teacher when I became ill and had to fly home. I have moved back in with my parents and for two years have been totally dependant on them financially, emotionally and physically. Alopecia has robbed me of my hair, eyebrows and eyelashes and ME has robbed me of my independence, confidence as well as many other aspects of my life.

Before becoming ill I had no idea about the ‘spoonie’ community however, now I would class myself as a fully fledged spoonie. So let me explain; a spoonie is someone with a chronic illness. You start the day with a certain amount of spoons and as your day progresses and you do activities, you use up your spoons until you have none left or are in negative numbers! Spoons are often not refundable by sleep, sleep is often unrefreshing so pacing becomes the best option which is a hard lesson to learn.

spoon-theory

One of the things I have found the toughest is my lack of independence and relying on my parents to support me financially. So, a few months ago a little idea came to mind – maybe I could use my spoons to my advantage and set up a little business that I could control. I love to bake and I love to be creative and one of my sayings since getting ill has been, make your own sunshine. And so that is when Sunshine Makes and Bakes was born.

sunshine m and bs

Behind the scenes I have slowly, at my own pace, set up a little studio at home and begun to make crafts and bake cakes to sell and so far it’s been a revelation. It’s given me back some independence and given me a purpose again. I am in control so if I don’t have enough spoons, I don’t have to make or bake that day and if I am having an okay day, I can spend fifteen minutes, half an hour or even an hour working on my products. There’s no pressure of letting people down, it’s like a hobby that I control.

A website has now been created and I am ready to go live! I will be posting UK wide but if you’d rather collect and avoid postage fees that fine too. Obviously for cake orders it will be collection only. To ensure I am pacing myself I ask for 10 days notice on orders so I can ensure my health remains the priority. I am SO excited to share my wares with you and hope you might like what you see enough to make a little order!

There are many different items available – greetings cards, photographic cards using my own photos, framed and unframed button and scrabble art, magnets, magnetic pegs, Christmas card sets and gift tags and a wide range of baked, scrummy goods! I am happy to personalise orders – crafts and bakes –  and to talk through ideas you may have about products to ensure you get the most sunshine from every order you place. As they say – if you don’t ask you will never know!

You will notice that there isn’t a shopping cart on the website, all orders need to be placed via the contact page. Just let me know what it is you’ve seen that you’d like or something you like that you’d like to personalise and I will then send you an invoice before getting to work on your purchase. The website is best viewed on an iPhone or from your computer, it isn’t fully compatible with iPads yet.

 

So, here’s the link, go get some sunshine in your life!

http://www.sunshinemakesandbakes.co.uk

I am also on social media:

Twitter: @sunshinemandbs

Instagram: @sunshinemakesandbakes

Facebook: @sunshinemakesandbakes

So get following, get liking, get sharing and possibly even get ordering!  Spreading awareness about chronic illness is so important for me and anything you can do to help with this is always much appreciated.

But finally and most importantly, thank you so much for your continued support and well wishes, it keeps me going from day-to-day.

#hairlesshannah

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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

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

 

 

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Quiz Night round up!

Hello all! So today’s little blog is just to say a huge thank you to everyone who came to and supported our quiz night last week. We were raising money for Alopecia UK and for our neighbour Paul who is raising money for a new motorised wheelchair and further treatment for his brain tumour.

We raised an incredible £1138.30 which is way beyond what I expected from the night. Both recipients will be over the moon with the donations, I’ve given Paul his half already and he was thrilled and wanted to thank everyone for their generosity.

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The support given from my local community was also amazing, the raffle prizes donated definitely helped with the sale of raffle tickets – the palava of running out of tickets was a nightmare though – whoever heard of pulling out coloured post it notes for a raffle?! Cathy you were a total star for dashing off to Tesco and being creative in solving the problem – thank you.  I wanted to give the local businesses a shout out because more often than not these days, local communities get a lot of stick for not supporting people but they went above and beyond and I feel very lucky to live where I do.

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I really hope everyone had a good night, I will never forget coming round from a little nap in the side room to mum rapping lyrics from a 5ive song – it shouldn’t have surprised me really!! Deborah and Jen were total superstars for being in cool, calm control of keeping track of scoring and many other jobs – thank you lovely ladies. And then there’s mum and dad – I couldn’t have done it without you, I know I couldn’t do as much as I wanted to in order to help, so as always, you were superb.

Here’s to continuing with raising awareness for Alopecia UK and supporting friends when they need it most. Have a fab week.

#hairlesshannah

Bedside manner

It’s unusual for me to write an unplanned blog but today my fingers just needed to let loose on the keyboard to get out of my system the hate, hurt, anger and upset that’s  setting in. Even though I posted yesterday, I hope you don’t mind this unscheduled rant! It’s all too easy on social media to portray that life is peachy but sometimes we need to be honest because we can even trick ourselves into really believing the “I’m fine” business. Although that’s the path I’m happier to tread for the majority of the time, sometimes I find myself in a space that is so catastrophically not fine, that I can only be true to myself.

This blog is aimed at anyone in a job that holds any kind of human interaction whether that be face to face, via email or over the phone. It’s a blog to remind people that whoever you are interacting with, they are human. They have feelings. They may have their own problems that are hidden to you. I’m not particularly religious but at this moment in time, all I keep thinking is – treat others as you’d wish to be treated.

Earlier in the week I finally experienced my first decent phone-call with someone at the DWP. She didn’t talk to me as if I was a piece of dirt on her shoe, she didn’t judge me, she didn’t tut at me or make me hang up the phone and crumble into tears. At the end of the call I asked for her name and thanked her for allowing me to ask the questions I needed to without being made to feel belittled. Unfortunately, although she was pleased to be thanked, she said that it’s all too often she hears that from people and assured me that the position both she and her colleagues hold is not one of seniority, they are there to help and reassure people in order to ensure they get the help and benefits they need and are entitled to. How sad it’s taken four months for me to finally be treated this way.

And this leads me on to other experiences I faced this week. A letter arrived last weekend from the dermatology department, I’d had to reschedule an appointment in early January as it clashed with a neurology appointment but they had obviously overlooked that. Therefore this letter outlined the results of my skin biopsy and recent full blood tests. Luckily – well not really for me – most came back clear, but what if this hadn’t been the case? I would have found out via letter? And then I came to the last paragraph; a short, swift sentence saying they agreed with the diagnosis by my GP, that my ‘hair loss’ was linked to that and therefore they had referred me to a psychologist. I’m sorry, but had you forgotten that I am a human here? This is my life, my hair, my situation? And yet you are bluntly wiping your hands of me because, why? My case is complex and might take extra time and money? Why am I not worth that? But anyway, after another cry and feelings of deep sorrow and frustration, I dusted myself off, plastered on my “I’m fine” face and focussed on the fact I could discuss it on Thursday at my next appointment.

Fast forward to Thursday. It took a lot for me to get up to Kings for 9.30am yet ten o’clock rolls round and still we haven’t been called in so I approach the desk to enquire about how long the waiting time will be. It’s then that I am told the specialist I am due to see is on annual leave and the stand in Dr is not yet here and they can’t get hold of him. I’m sorry but, why were we not a) informed she was on leave prior to today or b) told when we arrived that this was the case? It doesn’t take a lot at the moment to make me cry because although I manage to keep it in most of the time, I feel like I’m constantly on the edge. So there I am walking back to my parents in a full waiting room, crying. All because my doctor isn’t there – stupid but it tipped me over the edge. Does no one actually care about me? I had a text the day before my appointment reminding me that a missed appointment costs the NHS £160 but hey, if a patient is stood up, never mind, come back another time right? No harm done!

To be fair, the receptionists were amazing and it really wasn’t their fault. After they did some calling around we were told the stand in Dr had been on nights and had apparently cancelled his day appointments but the message hadn’t got through. The next available appointment would be March. But at that point, eagle-eyed mum saw the senior dermatologist come in and asked the receptionist if she could see if he would see us. Long and short is, fair enough, he did. But I wish in many ways he hadn’t.

He is the lead specialist in the dermatology department so you would hope that his bedside manner was outstanding eh? I understand and give some leeway to the fact he wasn’t expecting to see me but that doesn’t excuse the next ten minutes in my eyes. He didn’t have any notes so was obviously working from memory from their meeting after the case conference but he proceeded to tell me that actually their diagnosis was that my hair loss was more than likely untreatable and incurable. Bang, just like that. I cried and he just commented, “no tissues – sorry, NHS.” No worries that I’ve just told a 30-year-old girl that her hair may never grow back, no biggie, you can cope with that.

After I gathered myself I managed to question him, I was angry and in all honestly did not trust what he was saying. In the letter I received, statements had been made about other things which he then did explain to some extent but also tried to wiggle out of. He also stated that dermatology don’t really know much about hair loss and alopecia, he shrugged his shoulders a lot and leant so far back on his wheely chair, at one point I cruelly wished he’d keep going so it toppled over. He was abrupt, insensitive and uncaring, I was so stunned and shocked and felt harmed by someone I didn’t really know. He did explain why the psychologist had been suggested, if I deal with any stress internally then my body may start to heal from the inside which in turn will help the outside – or something like that, I must admit I had started to zone out a little by this stage. I asked him why I had follicles that weren’t growing – he responded with, “pffff, we don’t really know.” Mum pushed him to say that his referral meant that there was still some hope to which he said yes, but in all honesty, by this point I didn’t believe much that was coming out of his mouth.

After that appointment I reacted in a way I hadn’t before. I didn’t want to talk, I didn’t want to be around anyone, I didn’t want to ‘be’ really. In that instance I felt I had no fight left, nothing, zilch, I felt done. I wanted to run away, not have to face any of it anymore, I felt like I had reached crisis point and all because of the way that a specialist of the NHS had spoken to and treated me.

He is going to refer me to a specific hair loss dermatologist at Guy’s which I will go to and I will attend the first psychologist appointment but after a restless night and thoughtful morning I have come to a conclusion. I do not need to be cured in terms of my hair. My lack of hair is not offensive contrary to some socially inept people, it doesn’t make me any less worthy of love or affection. Like I’ve said before, I miss my hair every single day and I hate the person that stares back at me just as much as the day I shaved my head. But the conclusion I’m coming to is that maybe that’s because I haven’t allowed myself to accept it because I’ve constantly been looking for a cure. I’ve seen my hair loss as something disgusting and something wrong with me. But actually, I don’t need to be cured. I don’t have hair. I’m HairlessHannah, baldblogger. This is me now and hair doesn’t define me, I don’t need a cure. It’s not disgusting, okay it’s not something we see often but it’s not harmful to me or to others. That thought is actually quite freeing, I’ve never considered it that way before.

The rest of what I’m going through DOES need a cure. I cannot live the rest of my life in pain, with constant fatigue, noise and light sensitivity,  in isolation, not driving, socialising, working, earning. I cannot live with pins and needles from the neck up for the rest of my life. All of that needs a cure. Not management, a cure. And if a cure for that is found then MAYBE my hair will grow but MAYBE it won’t. If the rest of it is cured, I will be able to wear hats and wigs if I so choose, I can wear make-up and jewellery. I can make myself feel more feminine again but my hair doesn’t need curing.

So, I will see this other guy, I will try out the psychologist incase it will help with my illness but apart from that, hair wise I’m done. I’m done with trying different treatments, herbal remedies, seeing different “specialists” because I simply don’t need their lack of bedside manner. I am taking back the control again. I don’t need their opinions. The only opinion needed in terms of my hair, is my own. So from now on, I am bald, I have alopecia and I am proud. My hair may grow back one day but it also may not and I need to start  accepting that. And as I cry whilst I type this, I know that this is the first step towards starting to love myself again which, as my dear friend told me during our reiki session this week, I need to be able to do that again because it’s actually more important than we realise. Hate in any form isn’t healthy so self hate can’t be doing me or my recovery any good.

As a teacher, no, as a HUMAN,  I always strive to treat every child, every parent, every person I come into contact with, with the utmost respect, care and kindness. I imagine how I would feel if I was receiving the news being delivered to me. I go out of my way to help people and to make sure they know how much I am investing in them. I know the NHS is under great strain at the moment but if the bedside manner isn’t there, that’s when patients start to lose faith. That’s when patients walk away from any potential help that could be available. That’s when the system fails us.

So regardless of your job, just remember that your job as a human is to treat people how you would want to be treated. Everyone is fighting something on a daily basis so be kind, be mindful and think before you speak.

Have a lovely weekend.

#hairlesshannah

History of #HairlessHannah’s hairstyles

Hair, or lack of it is one of the reasons I started blogging in the first place. Since losing my hair, it’s made me obsessed with looking at people’s hairstyles and I find myself longing to be able to brush my own hair, wash it, dry it, straighten in, curl it…all the things that when I had it, I found a drag! Hair was always the feature that I loved most about myself so I find it so hard that I no longer have that, there really isn’t much I like let alone love about myself now.

Over the years I have had so many different styles so I thought I’d take some time to look back at the good, bad and ugly decisions I’ve made and share them with you!

1988-age-2

So here I am, age two, blissfully unaware of the child abuse my parents have inflicted upon me!! As Jack said the other day, it is like they picked up the bowl from the table, plonked it on my head, cut round it, placed it back on the table and poured my cornflakes in! I have to say though, when watching back video footage of me dancing to Kylie, this hairstyle does have the most amazing swish about it that no other hairstyle could produce – every cloud!

As you can see here, over the following year, I just grew the hair out into a mohawk/the most incredible bowl hair cut you ever did see – simply horrendous!

Polaroid Picture Frame: https://www.tuxpi.com/photo-effects/photo-paper

Ah, age 4 and the hair is slightly better, grown out in a softer style with a much improved fringe. However….let’s talk about the outfit choice. Wow. I mean, I am obviously suitably happy with my clothes, the pose oozes confidence and just look at the stance and the hand! Yes, I do believe I styled that out beautifully even if it does look like Maria from The Sound of Music has pulled down more curtains to create this atrosity!

Polaroid Picture Frame: https://www.tuxpi.com/photo-effects/photo-paper

Two years later and I have to say, the hair is looking good! I loved having long hair, mum enjoyed crimping it and I remember loving laying at the end of mum and dads bed with my hair hanging over the edge and Dad brushing it with my much-loved orange brush, pretending to be Vidal Sassoon! I often just wore it down but I did like having pony tails and occasionally rocked some bunches. It was the 90’s!

Not being one to keep a style for long, by my seventh birthday I went for the chop! From long locks to my first ever, grown up, silky bob! From then on, the trusty bob often became my go to hair cut, it’s always suited my face shape – so I’m told – and I always found it quick to wash, dry and style. I loved this cut and was thrilled at my choice!

Polaroid Picture Frame: https://www.tuxpi.com/photo-effects/photo-paper

Oh good lord. What. Was. I. Thinking?? Why did my parents let me do this? Why did my hairdresser let me do this? Oh the shame! From my gorgeous bob to this. At this stage of my life, let’s just say I wasn’t yet ‘developed’ and I will never forget the day the balloon man at Stone Park Farm said to me, “Yes young man, what would you like?” I died on the spot and from that moment on I regretted this hair style.

Polaroid Picture Frame: https://www.tuxpi.com/photo-effects/photo-paper

Then I stumbled across this little beauty! Mum used to take Jack and I to have professional photos each year when we were younger – what you can’t quite see if the very fetching waistcoat I was wearing over a white shirt, I was so classy! The hairstyle is gradually starting to grow out and yes, it is in great condition but I look at this photo and see a nine-year old styled as a forty-year old woman!!

Polaroid Picture Frame: https://www.tuxpi.com/photo-effects/photo-paper

Luckily, and ironically, my hair always grew super fast so by the time I was almost ten, the hair had grown out and the trusty bob was back – hallelujah! (seriously, I was such a poser though wasn’t I!)

Polaroid Picture Frame: https://www.tuxpi.com/photo-effects/photo-paper

I can’t believe I am actually putting this photo out there for all to see! There is literally nothing positive about this photo! The hair has grown again but is just hanging there with the most hideous, neon, looped headband ever to grace this Earth. Then we move down to the braces – I was so uncomfortable with those on and remember really not wanting to go to have these photos done but I’m glad in many ways because otherwise there would be no documentation of this stage of my life. I won’t even comment on the top apart from saying , 5, a fan before they even became a band!

Polaroid Picture Frame: https://www.tuxpi.com/photo-effects/photo-paper

I was such an awkward teen! I felt awkward in my body and awkward in my style but this night I was going to a party and clearly figured that shoving a fake white flower (all the rage in 2002) in my hair was going to make everything better. It didn’t.

Now, finally, these are photos I can look at and think, yes, I got it right here! I had lost a shed load of weight, had my highlights done and went from a long bob to a graduated bob which has to be my all time favourite. I had also discovered straighteners here which changed my life!

2008 saw two very different styles (as you can tell, I really am one to experiment with my hair which is why I miss it so much!) I went from very light blonde to a gorgeous chocolate colour. However, that didn’t last long, I had got quite fond of my blonde hair and I missed the graduated bob too so, I changed it back again! I was lucky here because I had vouchers for a make over day so I had the colour and cut included in the day and they did a really good job. That is something I really miss and something I took for granted at the time – actually having my hair done and having control over it and being able to make choices. I loved being able to reinvent my image and I loved having my head massaged and being pampered.

Polaroid Picture Frame: https://www.tuxpi.com/photo-effects/photo-paper

A year later I let the bob grow out but had a wispy fringe cut in – thicker, fuller fringes were okay for me when I was younger but they aren’t for me now. This style of fringe didn’t bother me too much and on days that I didn’t want it, I was able to simply clip it back – perfect.

Polaroid Picture Frame: https://www.tuxpi.com/photo-effects/photo-paper

Here we go again – you can see the pattern here can’t you?! Blonde to brown, short to long, fringe to no fringe – I really did like changing things up on a regular basis! I do enjoy having darker hair, I’ve never been brave enough to go black. It is much cheaper to maintain as you don’t get the whole root problem but I have to say, having lighter hair is my favourite. At one point I did go short and red at uni, sadly there isn’t any photographic evidence of this, or that I could find at least and I have to say, I’m quite glad about that!

It seems like the art of crimping came back into my life in 2011. Only for fancy dress purposes of course but actually, I quite liked it! My hair here was long enough to put up in a pony-tail which I quite enjoyed but also, I purchased the doughnut rings and experimented with using them. I may like to change my hairstyles and colours frequently but don’t let this fool you, I was never very good at the actual styling. I mostly went for a side clip, the occasional poofy back clipped fringe thingy-ma-bob and when I was feeling especially creative, would pop in a bow, I know, get me! So using the doughnut was a challenge. I did achieve the required look a few times but the time it took to get there wasn’t worth the end result! At one point I  did spend some time learning how to curl my hair using straighteners which I grew quite fond of. It was nice to have a bit of volume and I enjoyed mixing it up.

Then we come almost up to date. When I moved to Dubai it became clear quite quickly that hair was going to be an issue! The weather meant that keeping any style for a prolonged period of time without using a ridiculous amount of products was quite unobtainable due to the heat! But also, finding a decent hairdresser was like finding a needle in a haystack. Amongst our group of friends we had several disasters and tears shed over the most hideous cuts known to man. Frustratingly, once I did find a good one who did my highlights and styled it beautifully, one month later it all fell out! Blinking typical! I loved living just down the corridor from my friends though, especially friends who knew how to do pretty things with your hair! I became quite accustomed to a french plait!

Polaroid Picture Frame: https://www.tuxpi.com/photo-effects/photo-paper

This is the last photo I took before my hair started to fall out again. As you can see, I really didn’t do much with my hair in Dubai and the trusty hit clips could be found most days keeping my hair out of my hot face! Also – please note that we are very happy in this picture because we are at the most amazing cinema with blankets and reclining seats! One of the things I miss most about Dubai!

Polaroid Picture Frame: https://www.tuxpi.com/photo-effects/photo-paper

So there you have it, the history of my hair! I have only included this one photo of the last year or so – I am currently styling out my Lidocaine patches like a badger – much easier than doughnut rings and curling tongs! But if you’re new to the blog, check out my post called, ‘Hair today, gone tomorrow’ under the category titled ‘Alopecia’ to fill in the blanks.

At the moment I do still have the hope that one day my hair will grow again, whether that be next week, month, year or decade. One day I will learn to properly style my hair and not worry about spending money to treat it like it deserves. Look after your hair guys and gals, because like many things, you don’t realise how much it plays a part in your life until it’s gone.

Have a fab weekend,

#hairlesshannah