That Don’t Impress Me Much

I have written this blog over several days/nights this week. Several long, tiring, emotional, painful days. I have to say, they have been the toughest so far. The mask has slipped – I cried in front of friends, in the middle of a restaurant one evening. I was mortified. Some of those girls hadn’t seen me cry since I’ve been ill. I’ve managed to keep strong and just try to magic away what’s going on and simply enjoy normality for a while whilst in their company. It didn’t matter to them of course, they were concerned about me but to me it mattered. It shattered that illusion that “I was fine.” But I adhered to my own advise and decided to leave and come home – I had taken on too much, hadn’t paced myself properly and hadn’t acknowledged that my symptoms were starting to worsen again.

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A combination of things have led to this moment in time. From my tenant letting me down last-minute so therefore having to find someone new to move in and incur the costs that go with this process. Since I’ve been home I have gone through all my savings and relied on the support of my family. I am incredibly lucky and I am very aware of that. We talked several times about the fact I should see what I may be entitled to but I guess out of pride, I never wanted to. But then, I thought, why shouldn’t I be entitled to anything? I am working two hours a week, have no savings and am relying on my parents who are both entering retirement and that just isn’t right. I know I have worked outside of the UK for a few years but I have contributed a lot to the system whilst working and living here so surely that counts for something? At the very least I should be able to contribute to the food bill or heating – (that bill must be considerably higher with me being home – sorry ma and pa!) So I bit the bullet. First I rang the citizens’ advice bureau who were very helpful and gave me the appropriate phone numbers. I felt quite positive but that was soon to change!

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I got through to a man who talked to me as if I was something he was scraping off his shoe. He was sarcastic and rude, presumptuous and self-righteous, unhelpful and unprofessional. I was honest about everything from working in Dubai, to telling him about my flat I am subletting. Yet I found myself having to defend my situation, explaining how I was a professional woman who had worked since the age of 15, been to university and qualified as a teacher. It is only now, after being ill for a year that I had contacted the benefits agency because I hadn’t wanted to abuse the system, however, things have become a little tougher, and I needed to find out what my options were. I had to defend the price of my flat which he scoffed at and asked how anyone would ever want to pay that price. He repeated several times, just to clarify, that I was single, 30 and unemployed! Yes, I am – and your problem is?! It was just an unbelievable phone conversation which actually really upset me. It made me feel like I was the scum of the Earth.

Following this phone conversation I have received roughly ten letters from various departments all stating different things – some requesting me to complete questionnaires, some stating I was unable to claim benefits due to renting my second (?) property and having savings in excess to the limit. There were many mistakes – I only have ONE property, I can’t afford to live in it so am living with my parents! I understand that my flat counts as savings and if I’m desperate I should sell it but that seems unjust somehow. I worked so hard to save and get onto the property ladder as a single woman and I don’t want to let it go. I then had a letter stating that the doctor’s certificate I sent was out of date and needed to send the next one (I hadn’t yet posted my doctor’s note!) I spent thirty minutes on hold to question this only to be told that when you register with them they count that as day one of seven days self certification and an automatic letter gets sent out saying that this “self certification is running out.” I told them that at no point in the letter was self certification mentioned and that the whole thing was badly written and very misleading!

I then received two text messages saying they had received my doctors note and that my payments would be out into the bank on my pay-day – result. Or not. It appears that when doctors certificates are sent in, that department assumes you’re in the system and sends an automated text informing you what has been received and that your payments will be continued. After another thirty minutes on hold this was explained to me and was told once more that actually, no, I’m still not eligible but that decision makers were still considering my case. Stupid, stupid, STUPID system!

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I have since had more back and forth phone calls and letters because they did my flat valuation incorrectly  – if their valuation was correct, I would be a very rich girl! It took Dad and I a while to decipher their workings and write a response. I was also informed over the phone when I was disputing this latest issue, that I needed to provide proof of my shared ownership because they’d assumed it meant I was sharing the ownership with an ex husband! Firstly, you made me clarify SEVERAL times how single I was and secondly, read the endless pieces of paper I filled in for you stating it was a housing association property!! ARGHHH! Now this was clarified (she didn’t like the fact that when she got her calculator out she realised Dad and I were correct so by this point she was being quite brusque with me) she informed me that I hadn’t sent in any proof from my mortgage lender or shared ownership company that they had agreed for me to sublet or that I was indeed sharing with them and not an ex….that is because nowhere, at any point was I asked to do so! But, this has now all been sent off and I am awaiting a response – what do we think all??  I feel this may, possibly, result in a big fat nothing!

And then there comes me. Me and my stupid body. It appears I am beyond most people’s help – no sarcastic comments here please! I became desperate last weekend. I have no idea if my symptoms have worsened because of a slight change in medications, whether the cold if affecting me or if I’m just simply getting worse. I now have a constant ringing in both ears and my noise sensitivity is through the roof. Lights are now even more painful and I am oh so glad that the darker nights have drawn in because there are more hours in the day where I don’t need my sunglasses on! The fatigue and muscle/joint pain is gradually getting more painful again but the worst thing is my head. I saw my GP two weeks ago where she informed me that in her opinion specialists most probably couldn’t be able to do anything and that the best thing I could do is ‘hope.’ Yup, you read that correctly, her prescription to me was hope.

Since Saturday the pins and needles have just gone insane, I now even have them on my eye lids making me want to reach in tear those bad boy eye balls out of their sockets. And on top of that it feels like my head is on fire. And I mean, white coal, pizza oven, scold yourself on a pan FIRE! Now, I have coped with the constant pins and needles for ten months now, I have learnt not to itch and scratch and have grown to accept that I flinch when the wind blows across my head, that my face physically hurts when a tear runs down it and that the pins and needles are accentuated when loved ones kiss me on the cheek. But come Monday, I was done. I slept for about three hours Sunday evening because of the pain. So I went to my GP. I can’t go into detail because it will make me cry. But long story short, she said there was nothing she could do. Nothing. That is why she has referred me to a neurologist. This is the same GP who back in February said I didn’t need to see a neurologist and that unless my face started to go numb, it was nothing to be concerned about….see face below….

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So, I cried. I kept myself busy because if I was busy I wasn’t thinking about the pain and the itching but being busy is tiring and being tired is one thing but not sleeping and being tired is another. Fatigue on top of fatigue is not good. Being busy hurts and the pay back from being busy hurts even more. But, I smiled and kept going, had my reflexology Tuesday morning but you know what, it was too much. So, although I really didn’t want to because I know how much strain the system is under, I had no other choice but to take myself to A&E. And you know what? The doctor I saw looked at me and said, “you are out of my skill set. I’m sorry but I have no idea what to do to help you. There’s nothing I can do.” That right there is the sound of my heart breaking. Eventually he said that he could prescribe me sleeping tablets to try to get me through to Thursday when we’d managed to book a private neurologist appointment….my NHS one was April next year – yeah, thanks GP! But, they haven’t worked so…great. I’m trying the ice pack on the head which he suggested but it hurts so much. I haven’t had anything on my head in months so applying a freezing cold pack isn’t the greatest. However I’m persevering because it might start to work…might. It made me wonder, if I walked into the surgery or A&E with my head literally on fire and ants crawling all over my face with pins attached to their feet – would they have sent me away so casually? I think not. Hidden illnesses are brushed away so easily, it’s quite scary.

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And then we get to Thursday. Mum and I hit traffic on the way to the private neurologist appointment we made which led to her using a phrase I have never heard pass her lips but did break the nervous air that was surrounding us… “shit the bed!” The neurologist was very nice, South African. Mum was obviously nervous because he asked if we minded him just popping to get a glass of water when we went in and mum replied (in a very poor South African accent) “sure, no worries mate.” I mean come on mum, taking the p*ss out of the man who we have all our hopes pinned on?!  But we did giggle, mum said she has no idea why she said it, it just came out – and I suppose we should always have a story to tell right?! We giggled more when I had to strip off and don a very fetching gown – all pre tied in a little scrunch at the front – that’s what you pay for when you go private I presume?!

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Annnnnd guess what? There is nothing he could suggest for the time being. So that is my GP, a doctor in A&E and a neurologist that cannot suggest anything to help me right here, right now. I am trying so desperately to stay positive but it’s hard. I can’t stand what is going on in my head. I’ve got my little coping strategies to stop me every time I reach to itch my eyes or scrape my head with my fingernails. I’m writing lists left, right and centre, planning blogs, watching rubbish TV, planning future ventures all to keep my fingers busy and away from what they really want to be doing which is to rip the skin from my body. I try to lay and rest and hope that my over tired, crying from the inside out body will sleep and have some freedom for a few hours yet laying still and doing nothing means I can only focus on the pain and the burning and the itching so my body is reignited and sleep gets further from my reach. It. Is. Horrendous.

He did however say I needed to get an MRI and C Spine scan urgently and luckily I was able to get one book in (privately) the very next day. It was at 8.20am so you can imagine how getting up to London that early was for me! I think I was rather naive about the whole situation. I got into the scanning room and was told that the scan was going to be incredibly loud – never even considered that, so immediately I was on edge because of my noise sensitivity. Even through the ear plugs and ear protectors they gave me it felt like my ears were going to explode. The first 15 minute scan I had, a grated head-piece was placed over my head and as I was slid into the machine I suddenly realised that I was in fact quite claustrophobic – they do say you learn something new every day! The panic bell they gave me was almost squeezed several times – I went into full-blown panic mode. But then I talked to myself quite sternly: There are worse things in the world.  Imagine you’re on ‘I’m A Celebrity’ and you need to win those stars for camp! It’s fifteen minutes you wimp – man up. It’s only noise, big deal. And then, for some reason, Shania Twain, ‘That Don’t Impress Me Much’ entered my head and I hummed away to that for a while. Intermittently the noises and patterns on the machine sounds would change which would over ride my train of thought and plummet me into breathlessness and near on full blown tears.

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But then I was brought out of the machine, the grate removed and a new head-piece applied – equally as awful and then, back in I went. It was worse that time because I knew what was to come and I knew how long 15 minutes felt! But….back I went, making lists in my head, thinking of how I could make some money, picturing my favourite places in the world etc etc and then..out I came – I DID IT! But…no no no, they forgot to tell me there was one last scan to go…of my chest. So a wedge was applied followed by a heavy-ish plastic plate which seemed to push down on my chest so I was suffocating but back in I went. That was the longest 15 minutes of my life.

When I finally came out and sat up I felt so light-headed. I thought I was either going to faint or be sick. But Dad was there waiting and let me cry and sip water until I was ready to leave and off we headed to John Lewis for a smoothie and croissant!  He even let me have a little wander round their Christmas department! Dad’s are heroes right?!

I’m glad that’s all done now though and I only have to wait until Thursday for the follow-up appointment and results. I desperately hope that something shows up – nothing too bad, just something fixable. Because if nothing shows…what do we do then? (Let’s deal with that at the time eh?!) As always, humour came into play and a message I received from Carly on how she pictured my situation made me howl with laughter – she was picturing me from Silence of the Lambs and wondered if I was more like picture 1 or 2…I’d say a combination actually! Carly Dean – legend!

 

That afternoon I went back to my doctor’s surgery and saw someone else – not my GP – and begged, once more for some help. He has given me some Tramadol to try to stop the pain from the burning but because its neurological pain it may not work but I will try anything. Apart from that, he also said there was nothing. Take the pain killers and the sleeping tablet and see what the neurologist says when I get the results back. Joys. And a little silver lining is my dermatology appointment for May 2017 has been moved to January 2017 – it shows how desperate I have been when these words left my mouth: “I can live with being bald for another six months as long as something else can be sorted.” I miss my hair every day and detest how it destroys my confidence a little more every week but I can live with it…I can’t live with the rest of it.

I also seem to have had more experiences with idiots over the past few weeks too. On one occasion, for the first time ever I responded but the other two I didn’t and regretted it a little.

Scenario 1: In Boots waiting for my prescription so I buy a few toiletries. A lady next to me is asking the cashier to find the price of something. It’s £38 so the woman says don’t worry and walks off. I am the only customer left so of course, my cashier strikes up a convo with her mate because, you know, that service for you these days.  The conversation went as follows:

“What cost firty ate quid then?”

“Some stuff that’s meant to make your eyelashes grow when you lose ‘em.”

“God, if I lost my eyelashes I wouldn’t bovva. It’s only ‘air ain’t it?”

“Yeah, god so not worth it.”

I couldn’t help myself. Not at any point had either of them looked at me as I was being served or gauged the situation stood in front of them, so I drew their attention to it.

“Excuse me, but unless you have been in a position where you’ve lost your hair, not from choice but from illness, I don’t think you have the right to say what you’d be bothered about losing or how much you’d be willing to pay to make yourself feel better.”

My heart was thumping, I was on the edge of tears but felt so angry. They looked so shocked, one stayed silent and the other started to apologise but I cut her dead, I was on a roll.

“I don’t want your apology, I would just like to pay for my things and go and maybe from now on you could be more aware of your customers and what you say or don’t say in front of them.” Conversation..DONE and I turned away and beamed from ear to ear #hairlesshannah had the power that day.

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Scenario 2: In the Co-Op. A five-year old looks at me and states, rather loudly to her mum how she is “scared of that lady with no hair.” The mum glances at me, I am obviously looking at her to see what response she gives her child. She just says “SHHHHHH” really loudly. The child then repeats her statement again but points at me this time as well. The mum repeats her response but this time pulls the child around the corner so as not to offend her child’s eyes any further. I work with children, I get that they don’t always understand however, that child was rude, plain and simple. Her mum simply needed to explain quietly that some people are different blah blah blah but she handled it so badly. I got home and said to mum that in a totally uncharacteristic way what I really wanted to do was crouch down in front of that child and say, “you should be scared of me, see you in your dreams tonight little girl!” Obviously I would NEVER do that because I’m a teacher and I’m human but god, it would have taught her a lesson – if only it had still been Halloween and that would have given me the right…right?!

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Scenario 3: I got caught leaving Holland&Barrett by charity questionnaire men. Literally the first words from stupid man one: “That’s a brave hair style you’ve gone for there madam.” Firstly – madam?? I am 30, please! Next, “so why do you choose to have it that way?” And I failed here with the come back I prepared because, as always, I was flummoxed by his sheer front, so I just replied that I was ill (normally I’d say alopecia but that day I felt ill so that was the natural response). On comes the cancer assumption. “Well madam, I’ve just spoken to a woman who has survived ovarian cancer twice so I’m sure you are going to be just fine.” Wow. So I stay silent and am just about to say thanks but I need to go when his colleague, stupid man two, comes over and immediately says, “I’ve just grown out my hair from that style, hated it.” At which point first stupid man is giving him a look and explains that I have cancer and that I am going to survive it because I’m a fighter. Wow. I looked at them and just said, “I have to go.”

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So there you have it. My two weeks summed up in under 4000 words (sorry it’s been such a long one, but I feel like this blog has been like talking to a friend I haven’t seen in ages with lots to catch up on!  Well done to those of you who have read to the end!) But on a serious note, contrary to this somewhat down beat blog, I haven’t let myself get too down. I’ve had fleeting moments, well hours, sometimes days, where I have felt totally sorry for myself and thought, if this is my life now, it can bloody well do one. However, I am lucky. Even though I haven’t really been up to seeing many people or doing things other than make it to appointments, I have friends who text me, email me, send me balloons with my face on and gorgeous flowers and generally keep me sane from afar. They make me feel like I’m still part of the gang even though I not always physically present. And of course I have my family who, well, are as they have always been, the best.

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#hairlesshannah

 

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Spot the difference

It is a year today since dad shaved my head. So I thought I’d play a game of spot the difference! On the left is a photo taken just after the big shave which I didn’t post on social media but sent to a few friends. The picture on the right, I took yesterday morning. There are four main differences that I can spot – see what you think before reading on!

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1 – My eyebrows! One set are real, one set are tattoos. Both equally as good!

2 – The pictures on the wall are different. Life affirming quotes replace pictures of friendships that have faded over the last 365 days.

3 – The suitcase that held the hopes of going back to Dubai has been put away and in its place is Grandma’s chair. This little area is now where I sit to write my blogs and ideas for books. My little, quiet safe place.

4 – My face! I look at the picture on the left and remember how painfully hard it was to take this photo. After that I didn’t look at myself or take photos for a good few months. It was a relief to rid the pain staking possibility of hair loss each morning but it was one of the hardest decisions I ever had or possibility will ever have to make. Yet now there is a little smile. There is a little more confidence. There is a little more acceptance. Being bald is a far cry from what I hoped I would look like a year on but it is my reality.

The picture I did post on social media a year ago was this:

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I tried to deal with what was happening with humour. Humour has been massively important to me this year. At times I use it as a defence mechanism but most of the time it’s a coping mechanism because if I don’t laugh, I’ll cry and although I’ve cried a lot, I think on balance I’ve probably laughed more. I did make it through the day and I have made it through the year and it has taught me more about life, friendships, resilience and family than I could ever have imagined. I wouldn’t say I’m a better person because of this experience but I would say I’m a more rounded person. I have more empathy for people, I know that I can face adversity and remain positive for the majority of the time and above anything else I’ve learnt that society can be cruel and unkind but that on the whole, people are kind and open to learning about things they may have no previous understanding of.

I’ll always continue to raise alopecia awareness whether my hair returns or not because I will always consider myself an alopecian. I have drawn strength from others with the condition so I would like to think by continuing to spread awareness, someone else will be able to gain strength and have hope. Who knows what next year’s spot the difference will look like? Life is unpredictable but we only get one chance at it. So, my mantra as always, is to try to find the sunshine in every day.

#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

September round up!

I have sat and thought for such a long time about how to start this post. It’s not often I get speechless but after the events of this month I have been lost for words. BUT, have no fear, I am going to give it my best shot!

This was the first year that Alopecia Awareness Month even came onto my radar. I don’t know anyone with alopecia and until this year I had hair so why would I have been aware? But, I decided that this year, because I have been affected by alopecia and now totally understand the effect it has on people, I needed to help Alopecia UK and spread as much awareness as possible. I said from the start that it wasn’t about raising money per say, it was all about awareness. Alopecia is so unknown to so many people but is an illness that needs to be talked about more openly and honestly.

Each day I posted a photo on my social media linked to alopecia, nothing held back, some funny insights, some informative and some showing the raw emotion that alopecia can bring. That was my way of helping to spread some awareness. I had mentioned in previous blogs that some people may want to get involved but I didn’t expect people to get so on board!

Firstly, mum and her amazing aqua ladies had a Sassy Hat Saturday and all wore fun hats in the pool for their aqua lesson! The video footage was brilliant and they also, so generously raised over £100 for the charity. They are such a brilliant bunch of ladies, so supportive of me but also to mum which I am ever so grateful for. I know that many of them have been a listening ear and given many needed cuddles since I’ve become ill.  Mum has been a pillar of strength to me and has rarely let her true feelings come out because she feels she needs to be strong for me, I wish she wouldn’t but I know why she does. So, thank you aqua ladies – you are stars!

Dad also organised a Fun Hat Friday in his office and once again, everyone participated with enthusiasm and also amazingly raised £60 along the way. As with some of the aqua ladies, many of dads colleagues I’ve never met, yet still they joined in and helped raise awareness and money, thank you, you’re a brilliant bunch of people.

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Throughout the month I wanted my blog posts to be a little different. You’ve heard about my experience with alopecia and will do in the future. I wanted to offer a new perspective which is why I asked mum and dad to guest blog and also a friend, who for personal reasons  wanted to stay anonymous.  Now, I know for all three, writing the blogs was a difficult process. I think I’ve become used to writing my blog now and not being afraid to hold back and be truly honest, for me it’s therapeutic. I no longer think about how many people will read it and what they will know about me, but for people who haven’t done that before, I can understand why it was a bit daunting. The anonymous blog, as I’m sure you’ll agree, gave a different perspective on alopecia, it was someone else’s story and it was a very raw and honest piece. I must admit, when I read both mum and dads contributions, I cried. I think we all know deep down, how each other have felt over the past year, but seeing it in black and white, reading how what I’m going through is deeply affecting my two best friends, well, it was hard. I’ve tried to be brave and positive, not just for me but for them too, and reading how hard it is for them was heartbreaking. However, luckily, that’s what families are for and I am just so blessed to have the family I do.

This month I also did something I never thought I’d be able to do. I went back to my old secondary school and gave a talk in front of the whole sixth form about alopecia. I’ve stayed in touch, well no, that sounds too basic..I’ve become great friends with an ex teacher of mine, Nick, and she took on the mammoth job of organising a whole sixth form alopecia awareness day at school. There was no pressure for me to go in, I’d made power points that could be used but I just thought, you know what, grow a pair Hannah.  All these people are organising things for Alopecia UK but in the main, for you, because you’re their friend.

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It was so bizarre going back to school. So much had changed, including the name. We walked over to the brand new sixth form block which was a world away from the hut we used to have! I felt so very nervous but the students were amazing, they seemed interested in what I had to say and gave such a warm reception. It’s not often I would ever say this, but on this occasion I did feel proud of myself. I’d stood, bald, in front of a whole room of people and talked about my story. I must admit, I was digging my nails into my hand at one point, It was like an out-of-body experience. I’d made the power point but when I clicked onto the next slide and saw, projected onto a huge screen, the photo mapping the progress of my alopecia, it hit me for the first time – that’s me, that’s my hair story and here I am now with no hair. I even said to the students – I stand out because, here I am, the only bald person in the room, and that hit home hard and I felt overwhelmingly sad. But then, as I left, and after receiving messages from Nick over the following days about feedback the students were giving her, I felt proud. Out of this whole yucky scenario, I was able to do some good.

Then, what can I say, on Thursday 29th September, it seemed like alopecia took over a vast majority of various parts of the world! My gorgeous friend Carly, had organised a Fun Hat Thursday at my school in Dubai. To put this into context, each year group from nursery to Year 6 have 14 classes, most with 26-30 children in. It took a lot of organising from not just Carly but many other of my lovely friends and colleagues.  I guess I hadn’t really thought too much about it until the messages started to come in. The posters around school included my has tag #hairlesshannah and I started to get new comments on my blog and Instagram that provided me with so much sunshine I can’t even explain.

Then came the photos and videos – wow! Seeing literally hundreds of children and staff in their crazy hats – some even with balloons with Hannah written on them, one with a note saying – get well soon Hannah – it was just indescribable. To know that nearly 3500 people in Dubai were being educated about alopecia and thinking about me – what can I say? Just so moving. I had a text from one friend saying that in a lesson the children were talking about animals and they had a picture of a bald eagle on the screen. The teacher had asked about why they thought this particular bird had no feathers on it’s head. The response from a little girl was simply priceless – “Maybe it has alopecia!” I mean, come on!! How amazing is that?! She’d listened and learnt about alopecia and linked it into her following learning!

However, I think some younger children got confused and made Carly slightly excited that I’d arrived for a surprise visit! A guest speaker who also has alopecia went into school to do a talk and some of the younger children obviously saw her. They then ran to Carly – “Miss Dean, Miss Dean, Miss Green is in school!” Carly, a little confused, explained that, as she’d told them, I was in the UK, but they were still convinced. It wasn’t until Carly was told they’d seen the visitor that she put two and two together – it’s just made me chuckle that whenever these little ones see any bald women for a little while, they will be convinced it’s me!

When the communication from Dubai started to die down, and my tears of happiness had started to subside, then came the influx from Nick and all the work they’d done that day also! Fun hat photos were amazing and the cake and sweet sale they did raised £148 for Alopecia UK. They also involved the lower school and did a, decorate the egg head activity which looked like brilliant fun. All that organisation had paid off. It’s just crazy to think how many students both in the UK and Dubai have now been educated about alopecia – now that’s what a call spreading awareness!

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Then, to finish things off, on the last day of the month, I held a Mad Hatters Tea party. It was lots of fun, with games organised by my gorgeous friend Jen. We played musical hats, heads or tails and then finished with a team game of ‘pimp my weave!’ One team member had to don a swimming cap whilst the other team mates, in 5 minutes, had to pimp it out! It was messy, glorious fun with hilarious outcomes…and my team won! Again, so much awareness made and £55 raised for the charity, fab.

I want to finish by mentioning Megan, a beautiful little girl who I taught in Dubai. I became friends with the family and have stayed in touch as we are now all back in the UK. I couldn’t believe it when I opened Facebook on the 3rd of September to see photos of Megan having her hair cut short so that she could donate her hair to The Little Princess Trust. For such a young girl to do something like that is what I call inspiration. She was so selfless in that act, and some lucky little girl will now be able to have a human hair wig because of Megan’s generosity and kind heart. I’ve said it once but I’ll say it again, the Hart family are a bunch of truly genuine, caring, wonderful people and they should be very proud of Megan because I know I am.

I just cannot say thank you enough to every single person who has shared my story, talked about alopecia, done an event or raised some money. It means more than you will ever know and has lifted my spirits no end. It’s helped me become more confident in my new skin, it’s helped me start to like myself again, it’s helped me realise that hair or no hair, I am still me, I still have friends and family like no one else – and that is priceless.

So, although awareness month is over, don’t stop sharing the blog and talking about alopecia.

Thank you again to everyone who has supported me this month – you are all super stars.

Lots of love and sunshine (may as well finish the gushing blog with some more cheese!)

#hairlesshannah

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