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Autumn leaves are brown

Bald blogger, Hairless Hannah

So I’ve just had a Peter Kay moment…I always thought the first line of ‘California Dreamin’ ‘ by The Mamas and Papas was “Autumn leaves are brown.” Turns out it’s, “All the leaves are brown.” Gutted. It was the perfect title for this blog but as you can see, I still went ahead and used it anyway!

You will probably notice that from now on my blog might not always relate to my ailments. I will of course use the blog to update as and when I feel I want to write about it but I also need to explore other avenues for my writing. I just hope you continue to read and enjoy the content; nearly a year on and I have had over 10,000 views which is an achievement I am thoroughly proud of so thank you for taking time to read about my life!

Autumn is here…

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Me, ME & CBT

On September 21st, we were made aware that Radio 4 would be doing a phone in all about ME/CFS. So, mum, dad and I sat in the kitchen and listened in and I have to say, my reaction was not necessarily what I was expecting.

I assumed that the show was probably picking up on the fact that there has been quite a bit of press attention towards ME/CFS recently because NICE have ordered a review of the “treatments” available. Because of research I have done, I was aware that there are many people who suffer with ME, around 200,00 in the UK and there are only two therapies recommended by the NHS- GET (graded exercise therapy) and CBT (cognitive behaviour therapy.)

The phone in involved many people contacting Radio 4 and giving their experiences of ME and talking about the support and treatments they have tried or been recommended. And that’s where I was astounded, the sheer quantity of people they had contacted them was overwhelming and each person they spoke to or read out an e-mail from was so devastatingly sad, hopeless and in many ways negative. Yes, in some ways I found it encouraging that it’s not just me that has experienced the lack of knowledge around the illness from health professionals, that treatment options are sparse and that language used towards us is often belittling and derogatory. That I am not the only one suffering the way I do on a daily basis and feeling like they’re getting nowhere.

But what I found most frustrating was the views they put across about GET and CBT. Now, I am not a specialist on this and would never claim to be. Everyone’s experiences will differ and depending on the outcomes of said treatments, people will have different opinions on their worth. I am well aware there is no “cure,” and I know that there are many differing levels of suffering with ME and that I am by no means at the severe end of the scale. But that’s what’s tough, my level of suffering is bad enough so to imagine it being worse is unthinkable.

I won’t be commenting on GET as I haven’t any experience of it but as you may know if you have read my previous blogs, I have been given a course of CBT on the NHS. Even though I had heard some negative connotations around it, I really am a – ‘anything is worth a try’ kinda gal so purposefully didn’t do too much research as I wanted to go in with an open mind.  Therefore to listen to so many people’s stories of how it hasn’t worked for them, made them worse etc made me fearful for those who have been offered CBT and haven’t yet started.

I am ten sessions in and am still totally undecided on how I feel about it. It’s hard. It’s emotional and in some ways I have had to take steps backwards BUT I can see the reason why it is suggested as something to support ME sufferers. It has not made me better but it has helped me to “cope” a little more and supported me in terms of learning how to pace myself properly – before was all guess-work and I didn’t know what was best. I am lucky that I immediately hit it off with my therapist. I like her but more importantly, I trust her. She hasn’t once fed me the optimistic bs that so many doctors and specialists have over the past two years, she hasn’t guestimated how long it may take to make improvements and she hasn’t once made me feel stupid or that it’s all in my head.

My mind is still divided and in some ways uncertain as to some of the things we do – sometimes I think if I have to fill in one more bloody diary sheet I might scream!! I am not for one minute saying no one should be negative about CBT because believe me, I’ve had my moments. It isn’t a cure but you know what, if it’s the only thing that can be offered to me then I’d be silly to not give it my all and put my trust in her.

I spent the entirety of my last session talking to her about the Radio 4 programme. She hadn’t heard it but was interested in my thoughts and feelings. I admitted it had made me doubt the CBT process and feel terribly upset and worried that if it doesn’t help me, there aren’t any other options and it had made me feel hopeless. I also expressed my deep sadness for those about to start CBT or those who are only a few sessions in who may have tuned into the programme. At that stage you are so vulnerable and it could totally tip you over into the frame of mind to approach CBT negatively from the start and that surely leaves you in a worse off position than going in open-minded?

I explained how I worried that our sessions were very much based around unhelpful thinking patterns and that although I understood that helps my mental state, ME isn’t a psychological illness, it isn’t in my mind and that made me sad to think that is how I was potentially being viewed – as nuts. Or as it was expressed on the show, an over emotional female who can’t cope!

My therapist then took time to explain how she 100% knew that ME was not a psychological illness. How she’d worked with people who were bed bound, had seen the pain and other obstacles that her patients have to deal with first hand and that she would never want me to think that she thought of me as mad!  Once again she reiterated that she could make no promises with my recovery but that everything we do is with the aim to improve upon the way I live my life day-to-day right now. And that may be simply by increasing my daily activity by five minutes and she would be excited by that. Then we discusses my brain – a scary thing I can tell you! There is so much in the press about mental health which is so brilliant and she explained that although ME most certainly is a physical illness, the psychological fall out is just as real. The impact that ME has on your life is beyond explaining, I still struggle to fully explain the pain and frustration that lies behind my smile and the tears that are always ready to pour – to most it either looks like I’m fine or on the flip side that I’m in a mood (sometimes that’s true but mostly I cope by either smiling or being quiet because words just aren’t enough.)

I am slowly learning that my brain is just as in need of treatment as any other part of my body. If my arm broke, I’d get a cast, if my eye sight starts to go, I’d get glasses, if I hurt my back, I’d get physio. So when my mind is put under stress and strain, why shouldn’t I seek help through therapy? And there in lies the beauty of CBT. I can talk to someone who knows ME like the back of her hand, I’m not saying they all do, but luckily, my therapist is first class. She understands my symptoms and she helps me, asks me what I want to talk about, what I want to aim for, what my ultimate hope is for my illness and the treatment and slowly, gradually we work together to try to aim for that.

We make and monitor targets. I needed to know if and when I should push myself. I have totally reverted to being a teenager again and feel terrible guilt if I don’t achieve my targets or have to turn up saying, “Sorry, I didn’t do my diaries this week because, well, I wasn’t in the right frame of mind.” It’s awful, I feel like I’m going to get detention! But that’s something to work on because as you may have guessed, she doesn’t get mad, she doesn’t berate me. She tells me I know my body and mind the best. I know when I can push myself to achieve those targets we set, there is no point adjusting them or pushing for them if they will make it harder than it already is on a daily basis. Now that doesn’t mean she doesn’t push me to some extent but she pushes me within or jsut slightly beyond my limits and always does so with care and consideration. She is always at the end of an e-mail and replies quick as a flash and has supported me in so many other ways outside of the therapy room, in ways no one else has done before. I tell you, this woman really is top class.

It’s hard to see any progress, it’s like looking for a needle in a haystack sometimes and I know I get blindsided by time and milestones i.e. it’s nearly two years since I’ve been home and I feel just as stuck and possibly even sadder than I did back then. But at the end of the last session, she sensed that the Radio 4 programme had popped a seed of doubt into my mind so we got out my targets and charts from when I first met with her.

Over ten sessions (24 weeks) I have upped my daily activity by 20 minutes, this doesn’t seem by much but when most of the activities I do link to crafts – using scissors and using my hands, well, that hurts quite considerably so, yeah – 20 minutes is a lot!  I have reduced my daily sleep allowance to 2 hours (not achieved on many days, but on more than not) and when I achieve my ‘get out of the house daily’ (not met on 6/7 days this week, hangs head in shame) I can walk for 15 minutes without needing to stop or get home. I have also started to drive once a week, 5 minutes down the road to get to my reflexology sessions which is the biggest thing for me because I feel like that gives me some independence. I find it daunting and scary because I haven’t driven for so long and I am very aware of my capabilities or lack of them!

So, in actual fact, I have made progress. Yes, I may have achieved these without CBT but I reckon, for me, it would have taken a lot longer because I wouldn’t have known the best way, the safest way, the way which would help me most.

As I said at the beginning, this is my own personal experience and I know not everyone will be as lucky as me to have a therapist so experienced and so wonderful. But I guess what I’m trying to say is, if you haven’t started CBT yet or are nervous to, try not to be. Everyone’s experiences are different. It’s important to be honest, yes, and it’s brilliant to take advantage of that online community because you get so much support through it and learn a lot, however, as we know all too well, online communities can also have a flip side. It’s a safe place to moan and vent, I’ve done it! But that doesn’t mean it should cloud your experience. In the week between listening to the show and seeing my therapist I spent a lot of time online looking into others experiences with CBT and honestly, I only found one or two positive ones. I then felt bad, guilty almost that in some ways I am finding comfort from it. I’m not stupid, I know it won’t cure me, but I am realistic in that it helps me and I’m okay with that, it’s the closest I’ve got so far with any kind of proper help.

So accept those NHS sessions if you’re lucky enough, like me, to be offered them. And if like me, you weren’t aware that you could get access to sessions on the NHS, ask about them, request them, because who knows, you might actually find some benefit from it like I have. I certainly hope so anyway. This blog all began because I wanted share my experiences with alopeica but I think it is so important to share the good alongside the bad. Sharing positive experiences is so important, so please, if you’ve had a positive experience of CBT, let me know, comment below or send me a message, I’d love to hear about it.

Have a good Friday and a lovely weekend,

#hairlesshannah

My spoonie survival kit!

One of the questions I am often asked is what things help me on a day-to-day basis, things that ease the symptoms of ME. Obviously this will differ from person to person but I thought some might find it interesting or helpful to see what helps me, so here is my ultimate list for my spoonie survival kit!

What I always carry in my bag

I have never been one to pack light, even in my days pre ME! In the sixth form I was awarded the medal for being ‘mummy’ as I could pretty much always provide what anyone needed, from a tissue to a paracetamol, polo to a nail file! You will very rarely see me with a small bag as it just simply wouldn’t cut the mustard (where does that saying come from?!) in order to accommodate my needs!

  1. My polarised sunglasses. These were an expensive purchase when I lived in Dubai but my goodness have they been a life saver since being diagnosed. My light sensitivity is really bad and the difference between wearing normal sunglasses and my polarised ones has been incredible.
  2. Ear plugs. As I’ve mentioned before, noise sensitivity has also remained a real issue for me. As soon as I go somewhere that is more crowded I need these bad boys to keep my head from exploding. At home we can monitor and adjust the noise level but that’s not so easy if I venture out for a meal or to walk around a shop!
  3. Polos and rescue remedy. These two have featured in my bag essentials for a while now. Since suffering with panic attacks, these two things are my go to life lines. Bach’s rescue remedy I find really calming and helpful and as for polos, I’m not overly sure apart from a previous CBT therapist explained it may be because I can focus on a different sense which distracts me from my anxiety – who knows, all I’m bothered about is that they help when my anxiety rises!
  4. My little medication purse. One of my anxieties is that I could be somewhere and not have the thing I need to make me feel better so I have a medication bag! The essentials are: travel sickness pills, Imodium, paracetamol, Paramol, anti-histamine, inhaler, antiseptic hand gel, hand cream and throat sweets.
  5. Bottle of water. One of the side effects of some of the drugs I’m on is a very dry mouth but also, water is always good incase I need to take tablets or have a hot flush!
  6. Eye drops. Since losing my eyelashes I’ve noticed that my eyes are more susceptible to getting dry, itchy and getting dust etc in them. Eye drops are just a useful things to have at hand for those irritating moments.

 

At home survival essentials

  1. Electric blanket. Honestly, this bad boy is slowly becoming my new best friend! I haven’t had it on during the Summer but popped it back on my bed about three weeks ago and oh my, I had forgotten the benefits it provides. The difference in my restless and painful legs is definitely aided by this hot piece of material and I have found that the sleep I do manage to get seems to be of a better quality.
  2. My pregnancy pillow! Again, it provides me and my painful limbs with the much-needed support they crave. I am so much more comfortable lying down with this wrapped around me – who needs a man eh?!
  3. My diary. I’ve kept a diary every day since I was 11 but it really has been an essential for me as it’s a way of venting every day and getting my emotions out. I still find talking tough so this is my way of getting my thoughts and feelings out of my system before I go to sleep. Again, this helps me to go to bed with all those heavy thoughts weighing me down.
  4. Bath range! I love me a bath! Any Lush bath bomb will suffice but I absolutely adore the Marks and Spencers Sleep range. A friend got me them for my birthday – all lavender based, not overpowering, just right. A shower gel, foot cream, hand cream, body lotion and pillow spray, all amazing products although I am also partial to the Lush cream called Sleepy. There’s been a lot of press around lately about how it’s a miracle cure for insomnia…it hasn’t done that for me at all but I do love the smell and it definitely is a calming scent.
  5. Dimmer lights and subtitles! Yep, I am a granny…these link to light and noise sensitivity but there are always options to make life bearable.

 

So there you have it, my list of goodies that I use everyday to help me – if you have any to add to it, please comment and let me know.

Hope you’re having a lovely week,

#hairlesshannah

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

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