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Out with the old, in with the new.

2017 is almost upon us – I find it so difficult to comprehend that this year is almost done. The other day we sat around the table and did our annual, “what have your highlights been this year?” game. To be blunt, I couldn’t think of many. There have been many headlines about how 2016 has been the pits in terms of celebrity deaths, Brexit and Trump and my year fits quite neatly into that box of crap.

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Obviously I enjoyed our joint birthday bash and there have been the other days out that have lifted my spirits but all in all the year has been littered with appointments, frustrations, tears and sadness….oh and lots of sleep!

I do understand the whole ‘new year new start’ business yet when the clock strikes midnight on Saturday, things won’t magically change. As I did last year, I still have hope that in another year’s time things will be ever so much brighter but I now also have an inkling of fear that that won’t be the case. I’m still no closer really to a diagnosis, medication is still being figured out and if anything, I am in a worse state than I was a year ago. Therefore I approach New Year’s Eve with trepidation. Whereas last year I found Christmas much harder, this year I find myself getting emotional even thinking about the countdown to 2017. I don’t have any plans and 2016 feels like a total waste of my life. I know people will say, it’s not, you’ve done so much in other ways, but to me, this year has been rubbish.

I usually make resolutions like most people do…give up certain things, lose weight, take up a new hobby etc but this year I’m not making them. I’m just going to see what comes along and embrace moments with the aim of getting and feeling better about my life and myself. I guess this is because I fear that making any resolutions about my true hopes could end in more disappointment and to be honest, I couldn’t really deal with that. I think I’ve reached a level of stale mate. I’m now an accomplished actress of disguise but I’m finding it harder and harder to “be strong” “be positive” “have hope.” Living through 16 months of this has, in all honesty, been a living hell and because most of what I’m experiencing is invisible, it makes it even harder to explain and cope with.

Watching my friends and family go through their own hardships this year and not being able to help in the way healthy Hannah would have, has been hard to deal with. It’s been a learning curve to think up new ways of helping. I think this year has seen a lot of us having to really grow up and face grown up issues but thankfully we have grown together and it’s made us stronger. Life can be so cruel and unfair but unfortunately that is life and we have to keep going because what’s the other option? It’s the relationships we make along the way that help us put one foot in front of the other and that should never be taken for granted. Any type of relationship needs to be worked at, they are two-way interactions and sometimes cracks turn into great big crevasses that can’t be repaired but that is also a lesson worth learning.

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I’m aware that this post seems very doom and gloom and don’t get me wrong, I will be thrilled to see the back of 2016 and start a fresh. Maybe a new year will make me feel stronger again and I do hope that’s the case. I have lots of things to look forward to; watching my friends move into new homes, watching their children grow up, seeing my little brother move out and start making his own home with Yaz and seeing what my parents will get up to now they’re both retired! I live vicariously through all of these things. I don’t want to be tip toed around incase I get hurt or jealous. I want to hear what everyone else is doing, in the same way that I want to hear if they aren’t having a great time of things. Just because I have a long-term illness doesn’t mean that what anyone else is going through is any less important. I can still listen, give cuddles and be a shoulder. Like I said – relationships are a two-way thing.

 

I truly hope that 2017 is much perkier for all of us and that there are more moments of sunshine that we don’t have to make for ourselves. Here’s to light at the end of tunnels, to giving each other strength when we can’t muster our own, to bringing smiles to each others faces and to providing love, kindness and compassion as and when it’s needed.

Happy New Year everyone…see you on the flip side!

#hairlesshannah

 

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1 year blogiversary!

Can you believe it is one whole year since I wrote my first ever blog post? I certainly can’t. Although this year has felt like one of the longest, toughest years,when I read over that first blog I realised how much has changed. How much I have changed.

Throughout the year I have had to learn to deal with a wide range of emotions. It seems like whenever I take a step forward, inevitably (it seems) something happens to knock me back again. It’s like I am constantly swimming towards shore and as it comes into sight a strong current comes to sweep me back out to sea again. I have almost come to accept that now which makes me sad. I continue to be as positive as I can be but I must admit, I am finding that hard.

However, having said all of this, I finally feel like things are beginning to move in the right direction. The neurologist we are seeing has been brilliant. He wants to get to the crux of all the medications I’m on by seeing which ones are actually helping me and which we can get rid of or even replace with something better. He has also prescribed anaesthetic patches which I can put on my head to hopefully numb the pins and needles and dull the burning sensation. I’m on day 2 now and as yet nothing has changed but I am hopeful that with perseverance they will be the best Christmas present ever!

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I definitely feel like I am braver than I was last year. Because I’ve lost some of my independence, well, quite a lot of it, it makes me even more determined to be strong and brave when there is no one to support me. For example, this week I went up to Kings by myself and had a skin biopsy and more blood tests. Dad tried his very best to get to be with me but London trains decided to mess things up and mum was in Wales and I told her in no uncertain terms that I’d be so angry with her if she came back! And anyway, she has always said that if she’s not there in person, she is always on my shoulder to give me love and support. I must admit I was so nervous but I survived it. Yes I cried in the middle of the blood test waiting room but who cares?!

I’m also much better at asking for help when I need it. Telling dad I need to hold onto his arm because I’m shaky and my legs are weak. Before I would have struggled on. Not feeling embarrassed when I can’t open a bottle or carry something heavy because of my stupid joints! Little things but huge steps for me.

I may have bought a flat and lived alone for several years, lived in Dubai and travelled the world but this year has been the biggest learning curve for me. In many ways I feel I’ve reverted to childhood because I need to depend on my family so much in every way imaginable but I also feel more of an adult than ever before.

Like I have said many times, I have concentrated on focussing on the small things to make me happy. Last week a group of my beautiful friends organised a Christmas meal for me. They took into consideration all the hurdles that prevent me from doing things and eliminated them so that I could enjoy the evening. They will never know what that meant to me. I sat back that evening and looked around the table and also thought of my other friends who weren’t there and thought about how amazing they have been over the last twelve months and I actually felt slightly emotional. These girls have all been though unbelievably tough times over the last year, some for more time than that, yet they aren’t inward looking. They are always there when you need them, always supportive, always the friends that have become like family. I sat there and just thought how blinking lucky I am. Some people won’t ever experience friendships like I have or have the bond that I have with my family.

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Christmas is fast approaching and last year there is not one photograph of me. This year there will be, with the patch on my head and everything! I’d never really experienced the emotions that some people talk about when it comes to Christmas but last year I did. It was a bizarre experience. Christmas is another social media aspiration; everyone laughing and joking in their jumpers, sipping champagne,eating the best lunch and playing games. But life isn’t like that. Last year I didn’t want Christmas because I hated my life, I wasn’t in a happy place. It is one day but I didn’t really want it to happen, it was the first time I’d ever cried at Christmas. It’s such a funny time of year but it has always been one of my favourite times. I am all in for lights and festivities! So this year, although so much is going on and there’s no hair, still a world of pain and uncertainty, I am going to treat it like another day but just with a little more fun thrown in.

So, before I sign off I want to have a moment to write a mini Oscars speech! Firstly by saying thank you to everyone who keeps reading my blog and sends messages of encouragement and love – they mean the world and keep the positivity levels up! To all the people who have given up their own precious time to help me with reiki and reflexology and provide support with trying to do a little bit of work. I often wonder why I have been so lucky to have relationships with such amazingly talented, kind people – thank you, everything you’ve done has helped me deal with my circumstances and take steps in the right direction. Thank you to my friends who keep me laughing, help me feel normal and hold no grudges when I have to cancel or leave early. Each one of you are diamonds and I look forward to 2017 where we can continue to work out life’s ups and downs together! And finally, thank you to my family who goodness knows have also had their lives interrupted and turned upside down – there are no words but I think you know how grateful I am and how much I love you.

All that’s left to say is Merry Christmas and may 2017 bring you good health, good luck and good times.

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#hairlesshannah

365

Three hundred and sixty-five days. 365. A year.

I’ve tried as much as possible not to measure events in my life by time, like mum says, it helps no one. But, I’ve been back in the UK for a year today and that is a milestone. It’s a long time. I’ve watched one of my best friend’s little boy experience his first year of life and witnessed all the things he’s learnt to do. Life passes us by in a flash really and this year has made me slow down and take stock of what’s really important. In the grand scheme of things a year isn’t the end of the world I know; I’m only 30 and have many years ahead of me, yet, this is also the point that I struggle with. I know I haven’t “lost” a year of my life, believe me I’ve lived through every single day of it, but I feel like I’ve lost a year in terms of what I should be doing at my age.

As always, I have tried to combat every negative thing I can think of that’s happened in the past year with something that has been positive and actually, the more I’ve thought about it the happier it made me. Being forced to slow down and have time to think and assess life has been a good opportunity. So here are my year’s pros and cons!

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Firstly, I haven’t worked full-time for a year. I miss my job, I still resent not being able to properly finish my time in Dubai and I hate the fact that for the first time ever, I’ve doubted whether teaching is something I want to eventually return to. I’m so lucky to be able to be doing two hours a week at my old school, reading 1:1 with children and don’t get me wrong, I love that and it’s started to build my confidence. Actually, I can still make a difference and I do adore working with children. But seeing the stress that my friends and colleagues are under panics me. It saddens me to see people I love so swamped by paperwork, percentages, facts and figures rather than being able to totally focus on the important part – the children. I am just unsure whether this has been a wake up call to lead me down a different path because teaching isn’t for me?

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That thought terrifies me but then on the other side of the coin is the fact that because I haven’t been at work, I’ve discovered my love for writing. I will be forever thankful to Claire for encouraging me to start blogging. It’s enabled me to be totally open and honest in a way I otherwise wouldn’t have been with not only myself but with the people in the my life. Since starting the blog last December it’s given me some purpose, it’s something manageable I’ve been able to do – a little every day or as and when I’ve wanted/needed to. I’ve never written it thinking about who may read it, in a selfish way it’s been for me and me alone. I’ve written a daily diary since 1998 which has always been my way of processing things and ensuring I don’t bottle things up and the blog has been an extension of that. It’s just been an amazing bonus that people have read it, enjoyed it and supported me along the way.

This year has given me the time and material to write a children’s book which I am in the process of trying to get published. But the exciting thing is the door that’s opened in the process. One publisher loved my story but couldn’t take on any new authors this year however, said they were looking for authors to write books for titles they had. This was all new to me – I suppose publishers see gaps in the market and come up with titles and then find authors to write for them! I had to pitch three ideas for the title which they then presented to the bosses against other authors who had also submitted ideas. And amazingly, one of my ideas was chosen! I have since written the book and been through the editing process and now it’s being illustrated and will be published at some point next year! Okay it isn’t the book I hoped would be published BUT it will still be my writing, in a children’s book which has always been a dream and I can’t wait! It’s a step in the right direction so fingers crossed the next step is getting my manuscript published!

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Alongside not working comes the not earning money scenario and this has been one that’s plagued me more than most other things. I’ve always been fiercely independent. Money for me was a way of making sure I could live but also treat and support my family and friends. Not having a penny to your name is something I never considered for my life. It’s meant I’ve encountered feelings I’ve never had before; I know it’s not my fault, but I feel ashamed and embarrassed to have to ask for help from my parents. I hate it with every fibre of my being. They know and I know that I will pay them back every penny but for me, that doesn’t help, I hate it. But nthis situation has meant I’ve found pleasures in other ways that don’t involve spending copious amounts of money. My poor friends have received homemade gifts for presents, I’ve picked up hobbies like my writing that don’t cost a thing and baking which doesn’t cost an arm and a leg. It’s the little things that count and it’s made me appreciate them even more now.

When I was working and earning, there was always more that I wanted to aim for. Another country I wanted to travel to or something I wanted to save for and treat my self to. Always something I would see that I’d want to buy for someone. But not having money has made me realise that is isn’t the money that brings the happiness. It’s the people who you want to experience those holidays with, the people you want to spend time with – that is what is worth more than money. I will always want to travel and treat myself and others but I will be more mindful about it. Money enables us to do things and with that brings happiness but money isn’t the catalyst for happiness, we are.

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Last week I decided to finally give in and try to see what benefits I may be entitled to. Well, what an experience that was! Again, I can laugh now but that phone conversation was hellish. The guy was so rude I couldn’t believe it! Some of the questions had multiple choice answers but were so misleading, on a few I got confused and stumbled a bit,to which he exclaimed, “you’ve obviously never applied for benefits before!” Well actually, no I haven’t! I explained how I’d always had a job and that I didn’t want to abuse the system but after a year and going through all my savings and eating into my mum and dads, I should look into it! He also felt it necessary after asking about my marital status to say, “hmmm, 30, single and unemployed,” followed by a little chuckle!!!! SERIOUSLY?! I almost said, “yup, bald as well!” And when I declared the costs of my property and the rent I was getting from subletting, he couldn’t help but tell me how amazed he was that someone would pay that “for a flat.” I promptly told him I was a professional and that the people who rent are professionals who work hard to afford a decent place to live, but what I wanted to say is – it’s none of your bloody business you rude bastard!  What a phone call!

This year has also highlighted things I took for granted. Driving for example; I am now driving a little further than I have done previously but even then the furthest I’ve driven is Swanley. There are days when my ankle hurts too much to drive or I know that I’m too tired to properly concentrate. Not being able to get in the car and drive to see friends or do things is so frustrating. Then there’s things like going shopping or going to London or eating out or going to the cinema. I now religiously carry my ear plugs everywhere. I’ve got a new-found respect for autistic children who explain how horrendous it is when there’s too much noise, it’s indescribable. It is like my ears pick up on every single thing that is occurring in any given place and I then can’t focus on a conversation, it’s exhausting and it’s painful. I find myself wishing myself home to a quiet bedroom or place where I can control the noise. I look like Greta Garbo whenever I go out now because my light sensitivity is so bad I need sunglasses on!

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I just miss being spontaneous. Popping out, seeing friends, not worrying about how tired I feel and knowing that I need to pace myself. If I could be out doing things, either alone or with friends I would. It’s made me re-evaluate how much time I spent doing work and not spending time doing things with people I enjoy spending time with. I know that when you’re living “normal” life, it can be so hard to get that work life balance but as and when I get stronger and better, I will definitely get my priorities sorted and ensure that my life isn’t dominated by work. There is just so much more to life than that.

This year has made me see who my friends are and has made me start to say “no” and do things that enrich my life and theirs. I haven’t done a whole lot this year but the things that I have done and that I have spent my spoons on have been amazing. I cherish those days and moments so much more than things I’ve done in other years because they’ve all been with people who I now know I have an equal relationship with. They know I’d do anything for them and I know they’d do the same for me. It’s refreshing.

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There are some things that I can’t pitch a positive against like the whole hair situation. I’ve said it before and I’ll say it again, people who I see on social media with alopecia that embrace it and say it’s part of them and they are happy, I admire them. I feel like I have embraced the bald now but although it is part of me and I don’t feel as embarrassed anymore, I continue to detest it. Living with alopecia isn’t life threatening but it is life changing and rightly or wrongly I still have all my hopes pinned on the day that my hair will return. But as I write this paragraph I’ve thought, there is a positive – it has made me stronger. I’ve had to encounter social segregation and ignorance and verbal attacks that have shocked and upset me. But through my blog I have spread awareness for the condition but also developed an invisible armour around myself to field off any idiotic comments or stares.

I was wearing this armour the other week when I received a phone call from the estate agents outside Holland and Barretts. As I was on the phone a man walked past whilst staring in shock at my head – so much so I thought he was going to trip over the bin ahead of him! But I stared him out until he silently apologised and scurried away. Then to my utter dismay another man approached and did the same. So I stared back but this time, he stopped and approached me. My heart was thumping because I obviously expected the worst, but as he got closer he said, “I’m so sorry for staring, you’re just so beautiful!” Talk about a chink in my armour, it made me realise that not all stares will be for negative reasons and maybe I really can pull of the bald!

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When I saw mum and dad at the arrivals gate a year ago, I had never felt relief like it. I was safe. And I continue to feel that way a year on. My family is just beyond words. Everyone thinks their family is the best and that’s only right and I don’t dispute that but I just know that my family are my best friends and have been my rock. I already knew that but they have gone above and beyond this year and there really are not enough words to express my love or gratitude to them.

I am back in limbo a bit now whilst waiting for more specialist appointments but I do feel hope for the first time. The specialist at Kings was and continues to be amazing. She’s made me feel like they are doing all they possibly can to get to the bottom of whatever is going on and get me better. This has been the positive to oppose the negative feelings that are unfortunately creeping in about my GP. If you don’t know what’s wrong, just say. Do a referral, hold yours hands up. Just. Be. Honest. If my GP had done that months ago when we questioned if a specialist was the way to go, I would be much further along at this stage. But, I’m not and there’s no point in dwelling on it but it makes me sad and angry and definitely more prepared to fight for my cause than I was before.

So, there it is. My year. A truly crappy 365 that has uncovered so many wonderful things that I wasn’t aware of or didn’t appreciate as much as I should have. Making your own sunshine, as cheesy as it is, really works. A year ago I came home and cried and revealed my increasingly big bald patch but a year on I learnt how to use a power drill and used it to carve my pumpkin whilst being all wrapped up sitting at the patio table breathing in the fresh air. Now, it may not be how I’d have spent a half term before but you know what, it was bloody good fun!

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#hairlesshannah

A year for understanding

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So here we are, a whole brand spanking new year. I, like most people take time at the start of a new year to reflect on the past twelve months and set resolutions for those that lay ahead. We all have those specific years that we are delighted to see the back of but as I get older I strongly believe that no matter how tough a year has been, we can learn from it and grow stronger. Yes, in some situations it’s hard to believe that because the pain and suffering will spill over into the new year, but as I have learnt from my situation in the past few months, there is always something to take from tough times…the most significant being how lucky I am to be surrounded by some of the most amazing people that walk this planet!

We live in an age where the word ‘friendship’ is thrown around so easily, we measure it by how many ‘friends’ we have on social media and how many likes we get; but how many of those people are physically part of our lives? Don’t get me wrong, I love my social media friends, being able to see how school friends are getting on makes me smile and so many of them have sent private messages to me recently which have given me positivity and strength which has been so appreciated. Writing this blog has meant I’ve made connections again with people I haven’t actually seen in years and I look forward to following through with meeting up with them over the coming year.

I’ve been lucky enough to be brought up in a family that treasures friendship.  There isn’t a time in my life when I can’t remember having ‘dos’ at home, packed full of the most lovely people. I have learnt from a young age how important friendship is and I count myself lucky that I have a group of people who I can call my extended family. Amongst my group of friends, the majority will be pleased to see he back of 2015, yes it had many happy moments but it was littered with some of the worst. Since being home my friends have rallied round and been the best support network I could have dreamt of. They’ve understood that I’m not home for a holiday, they’ve accepted I’m not my usual self  and they’ve simply just been there. They’ve popped in and kept me company and given me hugs, they’ve phoned, text and kept me going – by being normal with me. Of course asking how I am and vice versa,  but usually just with the conversations we’d normally have and of course not forgetting random debates about The Kardashians or what box set we should watch next! I think it can be easy to take our friends for granted but I can safely say I don’t. I’d thought about writing the sentence, ‘I don’t know how I can ever repay them for all they’ve done and how much time they’ve give,’ but actually, I know they don’t expect that. That isn’t what friendship is about. I just rely on the fact that they know I’d do exactly the same for them without hesitation because that’s what you do for the people you love.

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I had a conversation with a dear friend recently about the importance of keeping things normal. Events happen in our lives but of course other people’s live go on and life in general is busy and we accept that but no matter how busy life is, how long does, ‘I’m thinking about you,” take to write in a text, or record on a voice message? Having a hidden illness has some similarities to some of the things my friend and other friends have experienced this year. When you lose someone close to you, you grieve but then you have to carry on with life as ‘normal.’ That doesn’t mean you aren’t still grieving or missing that person every moment, but people see your smile and your presence at events and assume you are ‘fine.’ I think it’s important as we start this new year to take a minute and think, is there someone who’s been through a really tough time lately that might appreciate a text, a call, a letter or a visit? Truth is, they’d probably like that very much. I’ve learnt so much from my friend this year, she’s shown so much strength and courage and approached things with such determination and positivity when I would have faltered so in a way, she’s been my inspiration for dealing with my illness the way I have.

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When I moved to Dubai, I was nervous about making new friends, I’d heard about people making their own little Dubai families which initially I thought was quite twee. But actually, my Dubai family is made up of some of the best people and they have been my support network from day one. Anyone who knows me, knows how important my family are to me, they come first, I’d do anything for them, it’s an unconditional love, so it’s a comfort to know that each time I leave them behind at the airport (the most horrific experience each and every time) I have another little family waiting on the other side. I think this helps Family Green too and I know how much it meant to them when I first became ill, knowing that my Dubai sister was there looking after me. She was my rock, I will never forget her bundling me into a taxi whilst I was having an asthma attack. We stupidly didn’t know where our closest hospital was so she had her google map out (because obviously Dubai taxi drivers don’t know where hospitals are?!) and got us there…ok, it was a paediatric hospital but hey, she is one strong minded woman and got me what I needed and was quite happy to tell the nurses to stop hurting me! Over the course of the next week or so she was there at the end of the day to check in on me, give me cuddles and wipe away my tears without once faltering. She empathised but laughed with me, she fed me gossip and kept me going. So Dubai sister, thank you, you’re one in a million.

So many other people in Dubai have been in touch, too many to individually praise and thank but I can’t go without mentioning my Year 2 contingent! Some say that we are cliquey, we aren’t, we are just a strong team who stand by each other, have such a laugh and get the job done…but I agree, you probably wouldn’t want to mess with us 😉 They have kept me smiling, sending photos, stories and keeping it real for me…there’s no point in feeling sorry for yourself around them, they approach everything with sensitivity but with the most amazing sense of humour that makes me so greatful to have them in my life.

There’s a saying, ‘you can’t choose your family but you can choose your friends.’ Well, as cheesy as it sounds, I’m lucky enough to have my best friends as my family. There are no words to express how much I love and cherish them and the support they’ve given me. They are the people who know me best, they tell me how it is and they know I’m far from being myself at the moment. That must be frustrating and upsetting for them but they are just being supportive and loving and when the time comes, they will make sure I get on with things!

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So, to round up, the main message of this blog is to make 2016 the year for understanding. Take time to understand what your friends and family are going through and if you don’t understand, empathise, research and then at least you can say you’re trying!

Happy New Year.

Hairless Hannah

xx