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The reality behind the photo

It’s been a while since I wrote about how I’m coping with having an invisible illness. I’ve now been formally diagnosed with ME/CFS which was both a relief and a worry. A relief because I can now answer questions definitively about what is “wrong” but also a fear because part of me really didn’t want it to be ME. I wanted it to be something curable, treatable…for someone to be able to ‘fix’ me.

I’ve been using social media much more to promote my blog lately and as we all know, social media portrays an image of people that doesn’t always reflect the honesty of your reality. Some people that I follow who have ME are truly brave and use their accounts to show the reality of daily life living with ME, but I don’t. I guess I don’t because I try to keep as many aspects of my life positive and happy in order to keep myself as pepped up as possible. There is nothing wrong with either but my option does then cause problems. By posting a photo that shows me out, smiling, laughing, with people, posting positive etc etc it would appear there’s nothing wrong with me. I’m not opposed to the odd selfie but I also don’t always feel comfortable to show reality through them, my space for being honest is here in my writing.

But what I want to write about in this post is the story behind the social media photos. Photos give you a snap shot. Take for example the photo below.

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This was taken on Friday evening at a surprise party for my ex head teacher and friend. I was picked up at 7pm…well 6.45 as Olivia was EARLY!…the party started at 8pm and my Dad picked me up at 9.30. In the photo I am laughing, surrounded by some of my loveliest friends, drink in hand, having a ball. And I was. In that moment I was happy, I was with people who accept me for who I am, support me through what I’m going through and understand my limitations. To many people though they will see this photo and possibly think the following:

  • Hannah is out, she tells us she’s in bed by 9pm
  • Hannah is dressed up and out at night when she tells us she struggles with noise and busy places
  • Hannah tells us she is in constant pain and can’t do very much let alone go out with friends

Now, I will tell you the reality behind that photo. I haven’t been out in the evening in a party situation since July last year and on very few occasions have been out for a meal in the evenings, so Friday was a big deal. I was anxious about going and I spent most of the afternoon trying to nap to have enough spoons to cope and calming myself down in anticipation. When we arrived it was much louder than I’d imagined it would be. I put my ear plugs in straight away but soon realised that because it was so loud, music plus ear plugs meant I couldn’t hear a word anyone was saying! So I spent the entirety of the few hours I was there with an increasingly banging headache and fuzzy head. I loved those few hours, but I also felt so self-conscious. I was literally the only bald person in the room, I felt like the light was catching my head or that people were staring at me and I certainly didn’t want to be in any photos. I felt hideous, I didn’t feel feminine, I felt ugly and awful and the worst I’ve ever felt about myself. So that photo was me putting on the biggest show of my life in a way – I was happy but would have been happier to not have been captured in that moment. By the time Dad collected me I was done. My legs, knees and back were throbbing, my ears were ringing to the extent I felt like I was shouting when talking to him in the car on the way home and my head was pounding. As I lay in bed that night it was like I was drunk (I only had diet coke!) my head was whirring, my legs cramping and having spasms, my knees seizing. I finally fell asleep at around 8am. That is the reality behind what it took for me to be at that party for two and a half hours.

I’m 31 in a few weeks. I should have been there with my friends on Friday until 1am dancing, drinking a Malibu and coke and being the one snapping the photos like I have always been known to do. I should be looking back on my 30th year and have it littered with good memories of adventures, holidays, milestones and happy times. Instead, it’s a year of appointments, medications, blood tests and sleep. Of course I have had happy times in the year but I think you know what I mean. I feel like a shadow of my former self and I find myself needing to defend how I feel because of photos like the one I’ve talked about. I refuse to not post those photos because otherwise I will not have any memory of these years, in effect I will be missing from these years of my life. There’s a campaign called ‘Millions Missing’ that promotes ME. It talks about how people who have ME are missing from their jobs, social lives, holidays, families..we can’t participate in life in the way we used to but we are still here, we still make the most of what we can when we can. Last year they organised a protest in Whitehall and various other places across the world where people left pairs of shoes to demonstrate how they were missing from their lives because of ME and protesting for the fact that more needs to be done in terms of research and greater funding needed from the government to help people understand the illness more and treat it and it’s sufferers better and with more care and consideration.

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I have been talking to a dear friend this afternoon about this but also about mental health and the similarities that we share. Mental health is also an invisible illness. Just because we had a good day or hour or five minutes yesterday, doesn’t mean we will today or tomorrow or next week. Mental health and ME are fluctuating conditions with no rhyme or reason, no straight path or definitive ending. They are illnesses that need understanding and for people to simply say, “I believe you.”

I find it hard when I see people who say, “You’re looking so well,” or “You’re looking so much better than when I saw you last,” because it makes me feel like a fraud. I feel like I need to defend myself and explain that it’s a hidden illness and looks can be deceiving. If I could wear a wig and pop on some make up I would look totally and utterly fine but I’m not. I feel embarrassed to have to then explain that I’m not actually feeling great but, “thank you for saying I’m looking good.” I know whole heartily that these people are probably being really genuine and kind –  it’s my issue not there’s, I should be thrilled to be told I’m looking well. But because of my personality, I worry that they think I’ve been having them on. My positive attitude and positive mask can work against me in that way because people come to believe it and don’t question it. I saw a friend the other day and we talked about how I am, the loss of my nose hair (!) and everything else in-between but when I saw her again on Friday night she said something that made me smile from inside out. She said that when she got in the car to drive away the other day, she thought about me and what we’d talked about but then she wanted me to know she thought, Hannah is still the same as she’s always been to me. Wicked sense of humour, same old laugh and smile and sense of caring for everyone. To hear that being said so genuinely meant so much, it wasn’t focused on how I looked, or all the changes in me that have occurred, it was a comment about me as Hannah.

Living with an invisible illness is teaching me so much and I’m sure there’s more to come. It’s such a debilitating condition that is stripping me of so much of what I consider my identity. And there’s no end in sight especially when the only recommended “treatment” of a course of CBT is a waiting period of 4-6 months! So, I will continue to try to test different ways to cope and pace myself, I will deal with the ups and downs, I will continue to try and like myself and my appearance, I will try and start to accept that I can’t drive or have much independence and I will continue to strive to stay positive.

It’s a lonely place in this little arena, my bedroom and little writing area are my safe place but they are also lonely. It accentuates the fact that I’m not in a busy classroom or planning for nights and days or even weekends out. But it means that when I do see my friends or I do go out with my family that I don’t take it for granted. I savour every moment even though it may hurt and will inevitably wipe me out for hours, days or nights after. Because at the end of the day, whether I like it or not, this is my life and I will still only get one shot at it. If and when I get better there won’t be a rewind button.

So as with so many of these blog posts, I leave you with this thought: many people you know or will meet may have so much going on in their lives that isn’t visible to you. So be kind and patient and understanding. Give them time, give them a smile and possibly some chocolate…every little helps!!

See you Friday.

#hairlesshannah

 

13 Reasons Why – my review

’13 Reasons Why’ came to my attention via social media. Twitter seemed full of it and that intrigued me because there was a clear divide of opinions. So it became my next Netflix watch and now that I have finished it, I also feel very torn. I haven’t fully digested it all and taken time to sit and think about how it’s made me feel hence why I am just sitting and typing and hoping that by writing about it, I will get rid of the feeling of unease it has left me with.

The premiss of the show is that a high school girl named Hannah Baker commits suicide but before doing so, she leaves tapes explaining the reasons why she has done so.  We are told the story through the character of Clay who struggles with the idea of listening to the tapes and it takes him an age to get through them because he feels so uncomfortable about Hannah’s story as it unfolds and hampers his coming to terms with her death.  This is something I felt I had in common with Clay – it wasn’t a series I felt I wanted to binge because each episode revealed a reason why this 17-year-old killed herself and that didn’t sit well with me. I needed to digest each episode and the issues it brought to the forefront.

Suicide is something I don’t have any experience of. Yes, dark thoughts have been a real issue for me of late but not to that extent. Yes, I’m taking anti depressants but not for the reason of suicide. Yet watching this programme, it portrays just how easily impressionable, vulnerable teens can be led to that state of mind where there seems like no way out. There’s nowhere left to turn, the feeling of emptiness is overwhelming to the point of no return. The show, in my opinion, is very well acted. It’s sewn together faultlessly to show the web of teenage life and how simple acts can lead onto bigger issues. We have to take care of the words that leave our mouths because we don’t know what other people are going through. When I was little the rhyme, “sticks and stones may break my bones but words can never hurt me” were relayed a few times but actually, that is so far from the truth. We don’t know what struggles people have or what their emotional state is. Simple, harmful, throw away words that leave our mouths in a matter of seconds can stick to the recipient for hours, days, months…years even and make a chink in their armour that is irreparable.

Every year as a teacher I have done a simple PSHE activity about how words can hurt each other and how we can’t take them back. The children start in small groups with a paper plate, a tube of toothpaste and some cocktail sticks. They love the activity – getting to squeeze out every last drop on the toothpaste onto the plate. And then when I ask them to replace ALL of the paste back into the tubes using only the cocktail sticks, it’s fun to watch their little faces, full of concentration and determination which soon turn into frustration and sadness when they realise they can’t do it. This is when I get them to imagine the tube of toothpaste is their mouth and the squeezing out of the paste are their words. The reality of it is we can’t get that toothpaste back in the tube, just like we cannot take back and erase the words we speak, once they are out the damage is done. A simple yet effective activity that I love and will always use.

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One of the reasons I wasn’t sure about the show was because a massive part of me agrees with some of the twitter comments about how this programme could be a trigger for those who are dealing with suicidal thoughts and who have dealt with/are dealing with abuse. ‘Stranger Things’ actress Shannon Purser tweeted:  “I would advise against watching 13 Reasons Why if you currently struggle with suicidal thoughts or self harm/have undergone sexual assault. There are some very graphic scenes in there that could easily trigger painful memories and feelings. Please protect yourselves.”  And I wholeheartedly agree.

But this doesn’t mean others shouldn’t watch. The shows main message for me is how many people miss Hannah. How much people around her care for her and love her, value her and miss her. It shows what she is now not a part of and will never be able to be again. It gives the message that if you are in this dark place to stop and look around, really look around and look for the goodness in your life – people, things, experiences and put your reason for living into them. Find reasons to live not reasons not to. Although I also know this is much much easier said than done.

It highlights the fact that we need to speak up about issues of mental health and abuse – it tackles rape and suicide very graphically. This is another part I still struggle with, probably because they are the scenes that stay with you because they are so graphic. I don’t know whether that is absolutely necessary because both issues are dealt with so well through the script but I see why they were included. It’s the rawness, the total open honesty of the show that hasn’t been done before to my knowledge – it tackles these issues in full view for us to see. So yes it is horrific, uncomfortable, upsetting viewing but it is needed in order to tell Hannah’s full story, for us to understand what she went through and to understand what led her to her ultimate death. And through that we can see how the people around her are led to realise how they played a part in it all – demonstrating again how delicate and thoughtful we should be to our friends, colleagues, acquaintances…people we pass on the street. The shows writer has responded to criticism about these scenes and why they were included and when I read them I understood the importance of their inclusion:

“It overwhelmingly seems to me that the most irresponsible thing we could’ve done would have been not to show the death at all. In AA, they call it playing the tape: encouraging alcoholics to really think through in detail the exact sequence of events that will occur after relapse. It’s the same thing with suicide. To play the tape through is to see the ultimate reality that suicide is not a relief at all – it’s a screaming, agonising, horror. We wanted to tell that story truthfully. And as difficult as it is to watch, it should be difficult to watch. If we make it easy to watch, then we’re selling goods that we didn’t want to sell.”

It’s okay to not be okay, but don’t be not okay alone. Friends and family are there through good, bad and ugly and to support and help you. And if you don’t feel you have friends or family that can do that, there are helplines and organisations who are. Suicide should never be the only option left for any human being.

Samaritans: 116 123

Papyrus (supporting teens and young adults with suicidal thoughts): 0800 068 4141 

Rape crisis: 0800 802 9999

Victim support: 0808 168 9111

I’m not going to recommend this show, not because I don’t think people should watch it, I do. But it’s a show people need to decide whether to watch or not on their own. It is an 18 certificate for a reason.

Sorry for the heaviness of this blog but the show just brought up a lot of thoughts about issues I hadn’t ever really truly considered before and I wanted to get it out there because they shouldn’t be taboo subjects, they need to be talked about so people don’t feel so alone. If anything, the show has brought these issues to the forefront, and whether you agree with it or not, people are talking about it and that equals awareness and that can never be a bad thing.

This has been a tough blog for me to write because I know there will be some people who have watched the show/have opinions on it who will agree with my thoughts but there will be some who really oppose them – let’s just remember the premise of the show here and not leave any nasty comments – everyone is entitled to an opinion and discussions are welcomed but only if they are kept nice and peoples own thoughts aren’t judged.

#hairlesshannah

Catching some zzzzz’s

Sleep.

When you think about that word, what does it mean to you? Is it a thing of beauty, does it conjure up images of an inviting bed made up with the softest, fluffiest pillows and prettiest of covers beckoning you to snuggle down and rest and recuperate? Or does it simply mean a thing that you need and have to do in order to function for the next day?

Do you need a certain amount of it in order to feel human and happy?  What is your minimum amount that will allow you to be human and not become a monster when anyone dares to talk to you?! Are you a late nighter or a 10pm-er? Do you enjoy a lazy lay in or are you an early riser? Is sleep a thing just for nights, do you revel in a cheeky little nap or have you trained yourself in the art of power naps? Do you need to set an alarm or is your body conditioned to your work schedule?

Does sleep bring you a release? A place to be you, to be quiet and thoughtful, to dream and escape? Is sleep and your bed a place you welcome when you return from a holiday or can you sleep anywhere?

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Sleep, for most, comes naturally. Our body clocks know when we need it and how long for. Our bodies are very clever like that, it knows when we need more or when we can possibly cope with less. That is, until our bodies’ works against us and that leads to some very tricky situations as I have been learning. Sleep has become much more of a nightmare for me since becoming ill. Having researched more it is very clear that many ME CFS sufferers have this same problem; the feeling of overwhelming fatigue is there all the time, the ease to nap during the day out of necessity unlike in the university days when a nap just helped you for the upcoming night. Yet when it comes to the evening and the night-time, sleep seems to evaporate. Our bodies pain sensors kick into overdrive and sleep gets further and further from our reach.

I have never had issues with sleep before, I’ve always needed between 7-8 hours and that has always suited me well. But now, insomnia/painsomnia is in my vocabulary and it sucks. No one can really explain why this happens but it clearly does. As with the rest of the research with ME CFS, there isn’t enough of it to explain all of the side effects and symptoms. I guess it’s almost like when people say you’re overtired or you’ve had too much sleep and your body gets confused. But with my body, I can’t sleep because the pain intensifies and I simply can’t get comfy…even with my pregnancy pillow! I have tried sleeping tablets which to be honest worked a little but not enough and in any case, I can’t stay on them as they are addictive. I have started using herbal remedies but they just don’t seem to match up to the discomfort and insomnia.  I do manage to get some sleep when my body literally crashes but it is always broken and it is never deep, restful or refreshing.

I’ve tried everything in the depths of the night to distract myself from the pain and discomfort.  I’ve tried laying there and persuading my body to rest and sleep. I’ve tried watching box sets and TV programmes, listening to music and audio books, colouring, blog writing, pacing around my room every half an hour to move my stupid aching limbs. Nothing works and that’s when the frustration kicks in, that’s when the mind starts to act against you too and the endless thoughts go round and round your brain tormenting you. It’s such a lonely, scary place to be. It’s a feeling of being trapped and not being able to escape, a feeling of the unknown. And this goes round on repeat until eventually the body can’t take it anymore and shuts down and sleep occurs. Then I’ll wake every hour or so until I make myself get up ready for another glorious day!! Our bodies and minds really are a marvellous thing but sometimes I just don’t understand them. They are meant to be wired up to help and protect us so why do they work against us at times?

Sleep is just another thing I’m having to approach differently these days and that is just how it is. It’s not nice but it’s not the end of the world –  it’s just another thing I just never appreciated enough at the time..but then who does?

Hope you all sleep well tonight, sweet dreams.

#hairlesshannah

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Mini Egg Cookie Dough Bars

So the Easter Weekend is upon us and I’m sure lots of you will be spending your long weekend/last weekend of the school holidays celebrating with chocolate, entertaining and having some fun! So here is my second Easter baking blog for you to try – super easy, fast and will make everyone happy.

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You Will Need:

  • 275g plain flour
  • 1 tsp bicarbonate of soda
  • 1/2 tsp salt
  • 1 tbsp cornflour
  • 115g butter/stork
  • 55g granulated sugar
  • 135g light brown sugar
  • 1 medium egg
  • 1/2 tsp vanilla extract
  • 270g mini eggs
  • 100g chocolate chips

 

Method:

  1. Pre heat your oven to 170 fan and prepare your 9×9 square tin by lining it with some grease proof paper ready for use later. Smash up your mini eggs in a sandwich bag using a rolling-pin – do this on a chopping board! Make sure you save a handful of whole mini eggs for decoration later on.

2.  In a bowl, mix together the flour, bicarbonate of soda, salt and cornflour.

3. In a larger bowl melt the butter – I did this in a glass bowl over boiling water on the hob but you could use a large saucepan.

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4. Carefully remove from the heat and put onto a heat proof mat. Add in the granulated and brown sugar and which together until you form a smooth mixture.

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5. Now pop in the egg and vanilla extract and whisk again until smooth then mix in the dry ingredients, smashed up mini eggs and chocolate chips – use a spatula for this part as the cookie dough will form and it will be thick so a whisk would probably die a death!

6. Press the cookie dough mix into the tin and when evenly distributed, pop on the whole mini eggs that you saved to decorate.

7. Place the tin into the oven for around 20-25 minutes until the top on the bake is dry to touch.

8. Place the tin on a wire rack to cool, only remove from the tin after half an hour. Once fully cool, cut into bars the size of your choosing and then you’re good to go!

 

I hope you have a lovely Easter weekend with your loved ones and that my recipes help you to entertain the little ones, please the older ones and use up whatever chocolate you may have left over!

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#hairlesshannah

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Tasty Tuesday: Chocolate Easter Bark

Today’s Tasty Tuesday is as simple as it gets! It would be brilliant for your own family to enjoy or to break up, wrap up and give as Easter gifts or as something to display at an Easter/Spring party.

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You Will Need:

  • 200g milk chocolate
  • 100g white chocolate
  • Bag of mini eggs
  • Bag of white chocolate mini eggs
  • mini fudge pieces
  • any other chocolate you fancy throwing in!

This recipe is obviously geared towards Easter but you can use whatever you want in the bark, basically, have fun with it, use dark chocolate, use all white chocolate – it’s up to you!

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Method:

  1. Line a baking tray with grease proof paper, secure it with a little dollop of melted chocolate to stop it slipping.

2. Heat a saucepan of water with a bowl balanced on top – BE CAREFUL, USE OVEN GLOVES AS THE BOWL WILL GET VERY HOT.  Melt the milk chocolate and then pour it onto the baking tray.

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3. Now melt the white chocolate and drizzle on top of the milk chocolate, use a spoon to gently mix it and create patterns.

4. Put the mini eggs into a sealed sandwich bag and crush up using a rolling-pin.

5. Now have fun popping all the different eggs, fudge pieces and sprinkles into the chocolate!

6. Place the tray in the freezer for 15 minutes or into the fridge for about an hour before removing it and chopping it into your bark pieces!

And there you have it, Tasty Tuesday Chocolatey Easter Bark – yummers!

 

Enjoy!

#hairlesshannah

 

Easter gift craft

With Easter just around the corner it’s time to start thinking about how you will celebrate and what gifts you may want to give to your friends and family. Easter eggs always tend to feature highly in most households at this time of year but it is so easy to just go to a shop, choose and buy an egg…it’s always nicer when there’s a little personal touch to things. So here’s a craft that children will love but for adults too – and once you have all the resources it’s super easy.

You Will Need:

  • Empty, clean jars of varying sizes
  • chalk paint
  • paintbrushes
  • ribbon
  • scissors
  • glue
  • Easter silhouette, vinyl, peelable glass/window stickers
  • various chocolate eggs

Method:

  1. Make sure your glass jars are clean and then choose the stickers you want to use.
  2. Put the stickers on the jars, move them around until you are happy with their position. 

    3. Now choose which colours you want to use; I went for pastel colours as I felt they were more Spring like. You will need a few coats, I started by going around the rims of the jar and then brushing down to cover the stickers and ensuring every part is coated evenly.

 

 

4. Leave to dry for around 10-15 between each coat.

5. Once dry, carefully peel off the vinyl stickers to reveal the silhouette on the jar!

 

 

6.  Fill each jar with your chosen chocolate eggs.

7. Then you can decorate as you please! I popped flowers on the lids and finished with some ribbon but you could do whatever you fancy really!

 

 

And there you have it, some beautiful little Easter jars to give as presents or use as a centrepiece for any Easter display.

Happy Friday!

#hairlesshannah

I, Hannah Green

Last week I finally got round to watching, ‘I, Daniel Blake.’ From the opening second I could feel my heart beating faster and stress filtering through my body – the scene was one of a conversation between Daniel and the DWP (Department for Work and Pensions) asking the medical assessment questions. Questions which will lead to you being awarded points which then determine what benefits you are entitled to. It is scored out of 15 and the questions go something like this: “Can you lift your arm above your head? Can you walk unaided for 50 metres? Can you walk to the bottom of your garden unaided? Can you show me how you take your shoes and socks off? Can you empty your bowels frequently?

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Yes, these questions and answers override anything your doctors or specialists have advised or done and if you score less than the 15 points they tell you that you are fit for work and therefore need to apply for Job Seekers Allowance. I cannot tell you how similar Daniel’s story is to mine. I scored 0/15 on my assessment. Zero. Zilch.Nada. So as with Daniel, I had my ESA (Employment Support Allowance) taken away – which I’d never actually received in the first place may I add – and was told to make an appointment for Job Seekers.

The character of Daniel is similar to myself. He didn’t want to give up without a fight because he knew he was entitled to something and that is what we have worked and contributed for all our lives. In the end I cancelled my Job Seekers interview after yet another frustrating conversation with the DWP. I tried telling them that although I was wanting to take my case for mandatory consideration, I was not willing to waste both my own and the people at Job Seekers when I wasn’t actually able to work! This they couldn’t understand. They wanted me to turn up and get advise on how to write a CV before applying – at this point I informed her I was a teacher and knew how to write a CV, again I was told, “In order to dispute your claim Miss Green, this is what we will need to see you doing.” Well I’m sorry, but I am not doing that, I am not willing to put myself through a humiliating session, being made to feel degraded and useless. So the route I am taking is to let the DWP know that my parents will be appealing on my behalf because I no longer have the strength to deal with their red tape and bs.

I won’t give away the whole storyline of the film, but you should watch it. It challenges stereotypes at every turn and gives an insight into how people could quite easily end up homeless on the streets. If I didn’t have my family or the back up of selling my flat, what would I do then? The reality is that once my money was gone, I would be homeless. I am sure the people at the DWP are nice people who are just doing as they are told but to me they are inhumane robots who don’t care, don’t see the real people, don’t consider what medical professionals are saying about your health. They talk to you like you are below them, like a piece of dog poo they stepped in on the street, they let you hang up the phone and cry because you feel so worthless. I wonder what they would do or how they would feel in the same situation?

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There is something fundamentally wrong with our society and our benefits system. I would give anything to be able to work, if I could I’d be down applying for Job Seekers ASAP but I can’t right now and regardless of what my GP, neurologist and ME specialists say, the computer still says no because I can lift my arms high enough to put a hat on my head! I know that the majority of people on benefits do genuinely need them, but I also know there are people out there who abuse the system and get away with it and that angers me beyond belief. All I want is to receive the benefits I’m entitled to so that I can help my parents pay the bills that I’m adding to by being back at home. I want to have some money coming in so I don’t feel totally dependent. I want to be acknowledged as someone who is worth the help and support, not someone who is a scrounger.

I, Daniel Blake is a very powerful film which highlights current issues in a true light, and I can say that because much of what he experiences mirrors what I have to. I have a very dear friend who is also having to fight for her sons rights, if you heard the details of their story your blood would boil on their behalf. The film should be watched by as many people as possible so that these issues are discussed – awareness can only bring positive outcomes. So watch, talk about it and take action if you feel you can. Our next step will be writing to our local MP, the injustice needs to be addressed.

I, Hannah Green feel abused by the system, but I’m afraid that as with Daniel in the film, they have chosen the wrong person and family. We will continue to fight and complain and make my voice heard..I just need to stock up on some spoons before I try again!

Just something for you to ponder on this Tuesday!

See you Friday.

#hairlesshannah