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An open letter to my GP

You have been my GP for over 25 years, you know me and my family well and have been there since the start of my illness in October 2015.

We haven’t had the smoothest relationship since my diagnosis of alopecia and ME/CFS, at one point you even rang me up to apologise about your conduct and approach to my condition. You apologised and promised that you would use my case as a learning curve so that any other patient that presented with my symptoms would not be treated the way I was.

After this, I didn’t see your for a while as I was seeing specialists and have been having CBT with the most wonderful, caring and understanding therapist I could have wished for. But, in seven sessions, my NHS input will finish and if I want to continue with CBT, which I do, I will have to pay for it privately. But, myself and my family also felt, in a way, that it’s the NHS washing their hands of me, abandoning me, because they don’t know enough about ME. So, that is why today, myself and my mum came back to you.

We accept that you won’t have all the answers or know everything about ME. As a teacher,  I never knew all the answers but if that was the case, I would research, refer and call specialists so that I could help and support the parents and children in their darkest hours of need to the best of my ability. I would never do what you did to me today.

Today, you sat in front of me and my mum and said that you had no time but that I had all the time on my hands to research, make phone calls, request tests and go privately.

Let that sink in for a minute. You have no time for me.

Now, let me ask you to digest this. Yes, I have time. But it is not my choice, it is not a holiday. I have a chronic, hidden illness that has robbed me and continues to rob me of my life. Myself and my parents have researched, spent money, done everything we can. Every test and specialist I have seen has been as a result of our suggestions to you. But today, we came to you because we needed help and support. We have hit a wall and needed suggestions of people, places, trials or just a simple offer of, “let me see what I can find out and I’ll get back to you.” Instead, you quite simply said you have no time.

Social media has given me a wealth of knowledge about my condition. I’ve heard about countless heartbreaking stories of suicide from patients who have received no help or support, who have simply been left to hope and deal with the cards they’ve been dealt. I’ve read of people no longer having the strength or support networks around them to keep fighting so just live with this illness, not having much of a life. I have never given up hope, yes, I’ve had my dark days, but I’ve always had the hope and belief that doctors and specialists would also not want a 31-year-old woman to just accept this is her life. But today, you changed this. Today, you knocked me down and I felt bereft.

At no point today did you show any empathy or understanding. You commented on my weight several times and yes, I know it is an issue – partly due to the ME, partly because of the drugs I’m on and partly because it’s been an issue for a while. You offered no suggestions of help or support, you asked if I was pushing myself to exercise, suggesting GET – by doing this you further emphasised your lack of knowledge of ME and your lack of bedside manner.

I ask, if you will, just for a minute to put yourself in my shoes and think, could you live like it for a day? Not just with the physical and hidden symptoms but with the loss of work, social life, income, and independence. And then consider how you’d feel after living that way for two and a half years.

I will pick myself up again, my family and friends will make sure of that. And we will keep on fighting. But as my dad said, we now know the NHS has abandoned us and we will have to go forward privately. You have no idea of how that feels, and I hope you nor anyone you know and love ever has to, because believe me, it is a horrendous prospect. It’s lonely and scary, it’s worrying and frustrating.

I would assume that like teachers, you have training each year to update your knowledge. May I suggest that you put forward ME/CFS as an area for all doctors at the practice to learn about, because the thought of another member of our community leaving their appointment feeling like I did today, leaves me heartbroken.

Yours sincerely,

Hannah

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Tasty Thursday – apple turnovers

Dad and I were inspired by Bake Off last week and decided to have a go at making some apple turnovers/apple puffs. We did cheat a little by buying some pre made puff pastry but…it’s easier and if you can, why wouldn’t you?!

You will need: (makes 8)

  • 500g puff pastry – we used Jus Roll
  • 5 large Bramley apples
  • 85g caster sugar
  • granulated sugar for sprinkling
  • juice of half a lemon
  • 1 pinch cinnamon
  • 1 pinch nutmeg
  • 1 tablespoon milk

Method:

  1. Preheat your oven to 190 or Gas mark 5 and grease two baking trays.
  2. On a floured surface or pastry board, roll out your pastry to 5mm thickness and cut into 15cm squares and place onto baking paper.
  3. Peel, core and finely chop your apples and add into a saucepan over a medium heat along with half your caster sugar and all the cinnamon and nutmeg.
  4. Cook for 10-12 minutes until the apples begin to soften.
  5. Remove from heat and mash and add in the remaining sugar.
  6. Pop back onto the heat, bring to the boil and stir for 5-8 minutes until space thickens.
  7. Divide the mixture evenly on one half of  the squares, leaving a gap around the edge for folding. We found we did have some apple left over.
  8. Fold the pastry over the create a triangular pouch and seal the edges using a fork.
  9. Score a small steam hole on the top of each, brush with milk and sprinkle some granulated sugar on top.
  10. Place onto baking trays. We found this bit tricky as the pastry was now soggy so we kept them on their baking paper rather than trying to move them!
  11. Place in the oven for around 25-30 minutes until the pastry is golden brown.
  12. Serve hot or cold.

 

 

We found it relatively easy to do although there was some leakage but they tasted really good! Let me know or send photos if you have a go!

 

Hope you’re all enjoying the sunshine!

#hairlesshannah

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What would you do if you were cured tomorrow?

Recently I replied to a tweet from @TomKindlon who posed the question: “What would you do if you were cured tomorrow?”

I answered quite quickly with the things that immediately sprung to mind, but I must admit, that question lingered with me and the more I’ve thought about it, the more things I’ve added to that list. It’s a hard one to contemplate because in reality, I am not going to wake up tomorrow cured. I am still ill, it is still on going, there is still no cure and the road ahead is still a long, frustrating, upsetting one. However, as with a good book or film, escapism from reality can be a release and I found it nice to dream for a while. So I thought I’d share with you my imagined “day in the life” if I woke up cured. (I’m also assuming that covers alopecia too and I’d have glorious locks again!)

I’d wake up in my own house/flat that I own because I can work full time again. I have a long shower where I’d use a hot oil treatment in my hair and luxuriate in shampoos and conditioners and revel in the fact I wouldn’t need a rest after my shower or at any point in my day until the evening! I’d style my hair, carefully apply make up, look at myself in the mirror and think, yes, today is a good day! I’d be able to choose a decent outfit because I would no longer be on tablets that caused weight gain and I’d be able to exercise because I don’t have pain or fatigue anymore to hold me back.

I’d then complete normal jobs around the house before jumping in my car, cranking up the radio and driving to meet friends for lunch…somewhere busy and social and with a beer garden so we can sit in the sun (Yes, I’m imagining Summer!) because I’m not longer sensitive to weather and I will tan and not burn!

I would then go to a travel agents and book a looooong, exciting holiday to places I can explore, meet new people and make memories. I won’t be worrying about money or being frivolous because I now cherish life, it’s not a rehearsal so work hard play hard has much more meaning. Following this I pop to the book shop to buy a real book because I can read again and I go home to sit in the sun, with a Kopperburg cider and read my book…it’s bliss.

As I sit in the garden, I don’t feel fatigued, I’m not worried about the brightness or the words blurring on the page. I don’t have to think about pacing or consider the guilt I feel for things I can’t do or contribute to because I am now able to contribute to society again. I can teach but also know that I don’t live to work. My health, family and friends are my priority and I will never again let work rule the roost. I reflect on how lucky I am to be surrounded by the people I have in my life, how they never gave up on me and how I know they never will.

I then go upstairs to have a bath because I recognise the importance of self care and quiet time. But also because I know that tonight I am hosting a party where everyone is coming round to eat, drink, play games and have a good time. Everything is organised and I’m not even thinking about the tidy up because I can manage it! I am grateful to be well, to be able to function as a normal human being and live a normal life doing all the things I love to do and after a brilliant music filled evening of taking silly photographs and laughing so hard your sides hurt, I climb into bed feeling exhausted. But good exhausted. Exhaustion that will be alleviated by the sleep I’m going to get.  It won’t take me hours to get to sleep and I won’t wake up a gazillion times because of pain, I will dream and wake up to another day.

One day….

#hairlesshannah

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Pet therapy

If you’d have told me this time last year that I would find pet therapy a huge help, I would have laughed in your face. We have never had pets because mum and I both have asthma and long-haired animals always used to make our breathing worse. However, last summer, mum and dad decided to sign up with a company called Barking Mad – quite appropriate for us! I categorically told them that that was their decision and the dogs would be their responsibility!!  I was very apprehensive about the idea. In case you don’t know, Barking Mad is a company that is an alternative to kennels when families go on holiday. “Host” families don’t incur any costs, in fact you get paid a small fee, the dog arrives with bedding, food, toys: everything it will need for its stay and then are collected when their holiday is finished!

Within hours I was in love with the first dog we had and then every dog that followed, bar one, become dogs that I fell in love with! I can’t explain it but I just feel so much calmer and more relaxed when they’re around. Stroking them and getting that unconditional love helps in a way that drugs and medication can’t. They are a distraction from the normal daily routine, they are fun and loving and I just love it when we have one to stay. The bit I didn’t account for is when they have to go home! It is SO tough to say goodbye but luckily we’ve had several returnees which is lovely because you know then and they remember you.

 

It is proven that having a pet lowers blood pressure, but more interestingly for me, they can cause endorphins to be released which are chemicals in the body that help to suppress our pain response. I can’t say I noticed a huge difference in my pain levels but they do distract me and take my mind away from the pain and discomfort which is good enough for me.

Each dog has been amazing for us as a family. Dad can often be found down on the floor playing with them regardless of the problems with his knees, depending on the dog, he is walking thousands of steps a day, mum has walked them and we are all noticeably calmer and happier when they’re around. It’s lovely. They bring big laughs as well that wouldn’t happen had they not been with us – for example, the night mum thought she was going to sit on our stool but actually fell into the dog’s bed and couldn’t get up because she was laughing so much! Lots of people have asked why we don’t just get our own dog but quite simply, they are a tie. Mum and dad are retired and want to go on holiday or have days out and having a dog means you have to plan around them and right now just isn’t the right time so Barking Mad suits them/us perfectly. But..I’m sure that one day they might get their own…I hope so anyway!

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Hope you all have a lovely weekend,

#hairlesshannah

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Tasty Tuesday: Red Velvet Valentine Cupcakes

Yes, you read it right…today is the return of Tasty Tuesday and it’s a Valentines special at that!! I may have mentioned my love for Cupcake Jemma before but I’ve finally got my hands on the cupcake book she’s done with Jamie Oliver and it’s fab! After some contemplation I decided to go with her red velvet cake recipe and not only make them into cupcakes, but use a tin mum and dad got me that makes heart-shaped miniature cakes!

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The only thing I would change is the amount of red food gel I used to make it a more vibrant red but other than that – they are yummy!

You will need:

For the cake (makes 24):

  • 235g self-raising flour
  • 1 tablespoon cocoa powder
  • 250g caster sugar
  • 3/4 teaspoon bicarbonate of soda
  • 270g unsalted butter, softened
  • 4 large eggs
  • 3 tablespoons buttermilk
  • 1 teaspoon vanilla extract
  • 1/2 teaspoon red food colour gel
  • 1 1/2 teaspoons cider vinegar

For the butter cream icing:

  • 250g butter
  • 500g icing sugar
  • 1/2 teaspoon vanilla extract

If you prefer cream cheese icing:

  • 150g unsalted butter, softened
  • 240g cream cheese
  • 840g icing sugar

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Method:

  1. Pre heat your oven to 170fan/375F/gas 5.
  2. Line cupcake tin or any other tin you’d like – TIP OF THE DAY, if you’re using a tin like the heart one above that doesn’t use liners, use a cake release spray. It works so much better than using the normal greasing method and the cakes fall out when baked – it’s one of my must have items.
  3. Sift the dry ingredients (apart from the bicarb) and 3/4 teaspoon of fine sea salt into a mixing bowl.
  4. Add the butter and eggs and beat for 60 seconds.
  5. In a separate bowl mix the buttermilk, vanilla extract and red food colouring and then add to the cake mix and beat for another minute.
  6. Scrape down the sides of the bowl and give it one more mix.
  7. In a cup, mix the bicarb with the vinegar – as soon as you do this it will start to fizz. Work quickly and add the fizzing mixture into the cake batter and combine.
  8. Fill you cases and bake in the oven for 20 minutes.
  9. Leave to cool and transfer to a wire rack.

 

For both icing options, sift the icing sugar and combine all ingredients, keep mixing until you get your desired colour. The longer you mix, the whiter your icing will become.

 

Finish off with sprinkles or any decoration of your choice and enjoy!

Happy Valentines you lovely lot!

#hairlesshannah

 

 

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Health Update Time

The time has come to publish a blog that I’ve been writing gradually over the last three or so weeks. If you’ve been with my blog since the beginning you will know that writing has been an outlet for my emotions and has proven to be very therapeutic. However, it also lays me bare and it can be quite daunting knowing that my life is out there for the world and his wife to access and judge. That’s why I haven’t pressed publish on this post until now because it’s been a tricky few weeks and my writing is quite raw, but, it is my way of communicating so it seemed silly to write it and not share. I have no idea why but I find opening up verbally to the people I love really difficult. Not because they won’t listen, support and comfort, simply because I find it hard to put into words sometimes – odd when I can write without difficulty right?!

I’ll start from the beginning. A couple of Fridays ago Dad and I went to London to see Lumiere London. It’s something I’ve always wanted to go and see and take photos of and this year I felt strong enough to go and see some parts of it.  I cannot explain how wonderful those few hours in London were. Although cold, London was still. No wind, rain, it was at night so no sun…I was able to walk outside without intense pain on my head and face for the first time in well over a year and it felt liberating. So much so that I ignored all the other symptoms as they began to creep up – knees piercing, muscles contracting, headache niggling and fatigue enveloping me with each step. But I didn’t want it to end, I wanted a normal night and to enjoy the moment, a day or two pay back would be worth it for this moment.

 

Nah. My body was not happy with me. Saturday lulled me into a false sense of security as I woke up feeling not too dissimilar to when I over do things but by Saturday night I was in a world of pain and this continued day after day for almost nine days. This is often the case with ME, post exertion malaise will often only properly kick in until 24 hours after the activity. With this pay back came a world of grey and I couldn’t shift it. I couldn’t really focus on anything other than the pins and needles, the joint and muscle pain, the fatigue on top of fatigue and simply how low I felt. I was well aware that I wasn’t really talking to anyone, friends or mum and dad and I know how frustrating, irritating and annoying that must have been to live with but I couldn’t face it any other way. By talking I would cry and crying is exhausting and I literally didn’t have the space to exacerbate the hell I was experiencing. I wanted to be alone, in silence and darkness and to hibernate until it passed.

But for me, the hardest thing was a new symptom. Rage. Anger. I am not an angry person but honestly, I wanted to smash things. Break, punch, scream…I was so angry. Angry at myself because I hadn’t paced myself: I’d ignored all my CBT “training” and my body turned round and basically punished me for being so stupid. Then came the anger because I am done with this life I’m living in. For others I guess it’s easy to think I am doing well – I still smile, I’ve had a book published and I make cards and pom poms which is an improvement. I agree with that. BUT, and it’s a big but…I live every day at a level people take sick days for and when I push myself, what I experience is something most can’t contemplate because it’s hidden and it’s misunderstood. That place that I live in day-to-day is lonely and frustrating. I am not better, I am not well.

I did have a CBT session thankfully in which I cried…a lot…she knew something was up. And as always, she was fantastic at convincing me that I need to focus on the positive that I had such a lovely time in London and not to allow it to put me off doing it again because I need to throw caution to the wind sometimes and live. She explained it that if she, as a runner, suddenly went from running a mile and thinking she was doing well so went and ran a marathon the next day, her body would make her pay and that’s the equivalent of what I had done. And I get that, but as I said to her, what I did in London that night was a fraction of what I’d have done in my previous life and it just seems so cruel and unfair that this far down the line I still can’t.

I’m angry that the life I lead now when I have a good day, is like the couple of days after you recover from flu and think – phew I feel a bit more human today. We did laugh though when at one point she said – just tell me all the things you’re angry about, which I did and then added, “I hate that I’m making f**cking pom poms and I am capable of so much more!” It just sounded so juvenile and ungrateful that it jolted me a little. I love making crafts but I can’t make it into something I’d love to because I don’t have the brain or body capacity to, so when you break it down, I make pom poms when I used to teach and make a difference and I just feel like my brain and body is rotting and isn’t good for much.

It’s so hard accepting that you are experiencing a hellish few weeks but that when you feel “better” you will simply be back at the level that most people couldn’t cope with. I have forgotten what it feels like to wake up and feel refreshed from sleep, to have a day without pain, to wear make up or have hair, just to feel nice. It’s not a pleasant place to be and it’s a daily battle to keep taking steps forward and bury the negatives and focus on the positives.

I mean – I did warn you that this post is a brain dump of everything I’ve been feeling, it does seem over the top and desperate but I guess that is the truth of it at the moment. ME isn’t a straight path. You take a few steps forward and then from nowhere you are flung ten steps backwards. Being in such a dark place is scary which is why I am grateful for the antidepressants at the moment because I know I need them. It’s children’s mental health week this week and now, having lived with an illness that’s so hidden and misunderstood makes it so much more important to spread awareness for these types of illnesses because they can so easily be missed, misunderstood and belittled.

Thankfully, with the help of some puppy love, brownies and time, I am just about out the other side of the pay back from that Friday three weeks ago and I will now continue with my targets and pacing and claw back some of the steps I’ve taken backwards.

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Remember, be kind to everyone you see. You never know what they’re dealing with.

Happy Thursday.

#hairlesshannah

 

Siblings

February 1st 1993, the day my baby brother was born and the day my biggest wish came true! I had always wanted a younger sibling and was so excited to meet him or her. It’s funny because, when you’re younger you don’t really get what having a sibling means, you just see others around you with younger or older brothers and sisters and it looks like it would be fun so I guess that’s what I wanted too.

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I remember being given a bright pink jumper with – I’m the big sister – emblazoned on it and feeling proud as punch. I had the morning off school and went to meet my new best mate and honestly, that has never changed. Cheesy as hell but true, Jack and I have always been close, maybe that’s partly because there’s almost seven years between us but mainly because we quite simply get along!

 

Granted, when he was little I used him as a bit of a toy, dressing him up, teaching him dance moves – there’s plenty of embarrassing video footage – but then as he grew up, I would be goaly by the garage door whilst he practised goal shooting and we began our endless sibling rivalry with game upon game of swing ball.

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Even Jack will admit that he was a bit of a mummy’s boy as he grew up, he didn’t like watching the film Twister because it scared him and when my friends and I forced him to play the board/video game called Atmosphere I’m sure he nearly burst a vein from crying! But we were a team – we ganged up on mum to test out her theory that she wouldn’t be able to scream if she was ever jumped or attacked because she’d be so scared. So, Jack sat in the kitchen and I hid in the under stairs cupboard and when mum got home he acted normal, she came to hang her coat up and I jumped out, scaring her half to death and releasing one horrendously loud scream…Jack and I cried with laughter but mum didn’t speak to us for hours…one of our finest sibling moments!

We are different in so many ways but it’s always worked. He has always been popular, handsome, confident and outgoing.  Always been annoyingly able to turn his hand to anything and blitzed his school days with no worries – or at least that’s what he led us to think! He passed his driving test first time – after making me think he’d failed and I’d FINALLY beaten him at something! He made his leavers music video hit over 250,000 on YouTube and became the “fit bloke with the blue shirt on” in the comments!! He can handle his drink much more than his lightweight sister and made so much more of his uni days than I ever did. I’ve never been jealous of this, I’ve always admired his zest for life, give it a go attitude – this is something I have learnt from him for sure.

He will probably hate that I’ve written this blog about him because we don’t really do deep and meaningful conversations about our relationship – what siblings do?! But I am proud of him, not just because he’s my little brother, just because of the human he has grown into. He approaches life with ease and a sense of laid backness, I do think that sometimes this is a case of a duck gliding on the surface and frantically paddling underneath, but who cares – he gets things done, even if it is on the day or hour before it needs doing! However, teaching has definitely made him more organised and forward thinking!

 

Life has been pretty tough over the last few years but he has never failed to make me laugh. He doesn’t force conversations but I know he is always there. He doesn’t probe but always has a cuddle ready. He doesn’t ask how I am very much but that’s okay because he’d rather treat me normally and take the mickey out of something I’ve said or done and then wink at the end to let me know he loves me really!

I guess I wanted to write this blog post on his 25th birthday because he’s now moved out and has properly started his adult life and it feels like the end of a chapter. One of the blessings in disguise of my whole illness was that we all got to live together as family Green for a couple of years. Many families wouldn’t cope with that, and believe me, we did have our moments, but it just showed me how lucky I am. Lucky because we are so close, we do get on and we do all genuinely love each other. I am lucky because so many siblings don’t get on, argue and fall out and we haven’t – yet! We aren’t twins but there is definitely a twin thing about us, we know how we feel and think before speaking and can confide and trust in each other like only best friends can.

 

So there you have it Jack Green – an ode to us as siblings – you’re creeping up to your thirties now so make the most of every day!

Happy 25th.

#hairlesshannah