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

 

 

History of #HairlessHannah’s hairstyles

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

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

1988-age-2

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Have a fab weekend,

#hairlesshannah

 

 

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!

patch

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.

xmas-1

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.

xmas-2

#hairlesshannah

Do you think you’re depressed?

This is a question I have been asked numerous times over the past few weeks by every medical professional I have seen. I think they ask it because if I say yes, they could prescribe me something and be smug in the fact that they solved part of the mystery that is Hannah Green.

They seem slightly confused when I tell them that no, I wouldn’t describe myself as depressed. I ask them to try to picture themselves in my situation and ask whether they think they would be jumping for joy. Yes the last few weeks have been tougher than ever but that is because my symptoms have worsened. Therefore, yes, I have felt sad, I have been extremely emotional and teary, I have been quiet and felt very isolated. But I am not depressed. I continue to try to keep positive as and when I can and smile and move on once I’ve kicked myself back into shape. They just find this hard to understand.

I have now seen an immunologist, a dermatologist and a neurologist (privately otherwise the wait was until April next year!) and still no one can help me. They can’t even help me dumb down the pain or the burning on my head. I have been prescribed sleeping tablets and Tramadol for the pain but these combined with some of the other tablets I’m on mean that I am a zombie most of the time. I haven’t driven for two weeks again and I can’t walk far because my legs feel like jelly and I’m unstable on my feet.

The dermatologist didn’t really know what to do or say so has asked me to go next week for a case conference where several specialists are in the room and can assess me – that part is great but she also wanted me to let my hair grow for two weeks in the lead up. I tried to explain through my tears that I never shave the huge patch where I lost my hair, just the parts that kept growing because otherwise it was so unsightly. After a week of regrowth and feeling my confidence shrivelling with every day, I rang her and explained once more how distressing it was. Thankfully she said that if I could take lots of photos of it, I could bring them along and shave my hair. So that has definitely been something good that’s happened. Well, it is but that was until I had to shave my re growth off. Although I wanted it gone, for a short time it has been nice to stroke the soft hair that was growing. That must sound so odd to you but I haven’t had hair on my head for a year so to know it still grows was a relief, it was a joy to use a little bit of shampoo for a week, to have to use a towel to dry off my hair after a shower. So shaving it was like a grieving process once more. Not as bad as before because I was regaining control again and you’ll be impressed, I used shaving foam and a razor and wet shaved it off without a cut in sight – now that is a talent I never knew I had!

My body – mainly from the neck up is fighting off any drug, ointment or cream I use to help me. I have the most painful, itchy, irritating patches of raw skin around my eyes, cheeks and eye lids. It hurts to smile, blink – it’s just an added symptom that is unbearable. I have red, painful spot like lumps and bumps on my scalp that come and go but are so painful too. To combat all of this I am finding myself trying to do things to occupy my hands rather than use them to itch and scratch my face and make it even more painful. It’s a counter productive experience because doing anything on top of all the drugs in my system means I get super tired and have pay back from anything I do but I feel like I don’t have an option because otherwise I would get depressed. So, I’ve tried new baking recipes, made a personalised advent calendar for the family, watch TV or films and sorting Christmas presents and cards on a budget! I also have spent so much time sleeping again which is the only true release I get. My word I never thought my thirties would be so fun!

So, I’m hibernating again. I don’t feel like going out because I am very self-conscious but also because I don’t physically feel like I have the get up and go to do much, to deal with the noise and bright lights and people’s stares. And with today being December 1st it makes me sad to think that a year ago I was telling myself, it’s okay, this Christmas is going to be pretty rubbish but by next year you’ll be better and with some hair regrowth but that simply isn’t the case.

So no, I am not depressed, maybe I’ve dipped in and out of it in split seconds of weakness but I think most people would in this situation. No one can be positive all the time and that’s alright.

Happy Advent everyone,

advent

#hairlesshannah

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.

shit

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!

security

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!

rach

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

 

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