Dream a little dream

If you take time to stop and think about how your brain controls everything you do, how it generates your thoughts and how it governs our emotions, thoughts, actions…basically everything we do, it can become quite overwhelming.

I am learning that my brain is quite an interesting little fella! It generates thoughts and worries that I can’t control – it’s like a beast that is refusing to be tamed! However, I am trying and through the help of CBT, I’m sure I will whip it into shape. I have found it so interesting dissecting my thoughts and learning about the influences that impact me and therefore enable my unhelpful thinking patterns. We/I often react to a situation by responding to how it makes me/us feel and that then leads to me/us behaving in certain ways and reacting to it on a physical level i.e. something has made me/us feel stressed so in my case, I can’t sleep and this leads to me feeling fatigued.

So if I try to consciously think about something it might start to change my behaviour, emotions and reactions which will mean that my physical and emotional responses will also change. The way it is described in the book I am reading sums it all up perfectly; The way we think about something will determine how we feel, and the way we feel will often determine what we do.  (‘Overcoming chronic fatigue’ by Mary Burgess.)

It is a really tough thing to unpick. I am keeping an unhelpful though pattern log at the moment where I have to dissect my thoughts. Thinking about the various aspects of that single thought is hard. Seeing things broken down and written in black and white really brings home the truth behind how I’m feeling and how it is impacting me on a daily basis. However, even though it’s a hard process, it is helping me to challenge the way I react and respond to my thoughts/worries. Don’t get me wrong, at the moment it really isn’t changing the way I respond to certain things but it is in the front of my mind and I am noticing how after I have these thoughts, I dissect them a little and challenge them and it helps me to box them up and shelve them rather than dwell as much as I have been.

Our brains are such intricate organs and one that I will never fully understand! Sleep is still a bloody nightmare for me at the moment. I simply cannot fathom how someone who is SO fatigued just can’t sleep. Over the last three weeks the most sleep I’ve had in a 24 hour period of 5.5 hours. I am sticking to my CBT targets and setting an alarm in the day for a maximum 2 hour nap although I could sleep longer – why is that?! Why could I sleep in the day with no issue yet when it comes to night-time, I just can’t get to sleep? And when I do, I will wake up every 30 minutes to an hour and then remain awake for anything up to two hours?! I just don’t understand and although I know so many ME sufferers have this problem – insomnia and painsomnia – I can’t find any research or explanation for it?

I have always been a vivid dreamer – always in colour and I can often wake up remembering them. But over the last few months – really starting when I was taking melatonin – my dreams have become stunningly vivid. I have a least one dream that I wake up from a night that feels like real life and affects me on an emotional and physical level. Some are totally bizarre although I can relate them to something I may have watched on TV or read about but some are quite clearly linked to my subconscious and they are the ones that are having the biggest impact on me. They are so cruel, it’s like my brain is torturing me on yet another level and although the dreams are wonderful to “live” through at the time, they are a flippin’ hateful things to wake up from because I come back down to Earth with an almighty thwack!

I’ll give you some examples! Here are two of my more bizarre dreams of late!

  1. I was the right hand lady to the President of the United States who just happened to be Denzel Washington – I do love that man! He was in terrible danger and I had to defend him Jack Bauer style and I have to say, I was kick ass! The dream ended with him shaking my hand and thanking me and I replied, “It has been an honour Sir.” Ha ha ha I mean, this is obviously a dream concocted by someone who loves ’24’ and would love to be a real life super hero!
  2.  Tom Jones was my friend and he was about to do a concert but had very swiftly been struck with dementia so couldn’t remember any of his song lyrics! Mum was hysterically upset because no-one would ever get to watch the genius of Tom in concert again and the dream ended with me trying to find a cure for dementia.

And then we come onto my more upsetting dreams to wake from!

  1. The marriage dream. I’ve had several dreams where I am either getting ready for my wedding day or living my wedding day. I can never see the face of the man but I just know I can feel how happy I am. The dress, flowers, party – everything – is always beautiful and the happiness overwhelming.
  2. The engagement dream. Again, where I can literally feel how happy I am and how in love and the dream is based around telling people we are engaged and it’s all jolly and wonderful!
  3. The baby dream. I am either pregnant or have a little baby and again, totally in love and totally happy. The most recent and interesting dream linked to this is one I had last week; I was a single mum, pregnant and had consciously decided to use a sperm donor because I hadn’t found the right man but knew I wanted to be a mum! I had a C-Section and had a little girl!

These dreams are tough ones because they are all linked to my real life dreams – I would love to be in a happy relationship and have my own family unit and if any of you know me, I have always wanted to be a mum. These are all things that for now, are way out of my reach and are pipe dreams quite literally. So to wake up feeling so deeply the happiness and love and then realise it isn’t true is hard and it takes me a while to shake it and separate it from my actual reality.

I love a good dream and what I am trying to say here is how powerful our brains are. Even in our sleep they manage to formulate our conscious and sub-conscious thoughts, hopes and wishes and bring them to life. It brings me back to the fact that our brains are equally a part of our body as a leg or arm and need to be cared for in the same way. We may not be able to see the hurt and damage that our brains are dealing with but that doesn’t mean that it’s any lesser than anything else that needs care and attention.

So, as always, remember that not everyone’s demons are visible, they can’t be fixed quickly, people can’t just snap out of it and all they need is a shoulder to cry on, a listening ear and a good old laugh.

Happy Friday everyone.

#hairlesshannah

Worry less, smile more

.Wouldn’t it be amazing if there was an off switch for all our worries? If you’re like me you will love a good quote and many a good quote base themselves around being positive, living your life to the full, worrying less and smiling more. But sometimes it doesn’t matter how much we try to convince ourselves of this, worries just can’t be magicked away that easily.

One of my targets from CBT has been to write in a worry diary every night, 3-4 hours before sleep, the aim being to oust the worries from my mind, write down steps I can take to begin to overcome them, close the book and hopefully that’s expelled them or at least calmed them from my mind for the night to come. I get the concept, I really do, but in some ways I’ve found that all this has done is emphasise my worries.

Now, I have always been a worrier, it’s been a long running family joke for as long as I can remember. I get it from my Grandma although I stand my ground on the fact that there is no- one in the world who worried more than she did! I do recognise this trait in myself and I do believe I have got better with age. However, although I have got better, I will now totally contradict myself and say in a way I have got worse because although I don’t worry about as much, the things I do worry about, I worry about BIG time. I definitely over think more and sometimes my worries are totally and utterly ridiculous and I will find myself researching how I would survive in a falling lift situation!

As we get older we become so much more susceptible and sensitive to the world around us. It astounds me when I see children running, playing, socialising fearlessly, not worrying about falling or hurting themselves, worrying whether someone is being mean or isn’t who they say they are – when does this change and why? I had the same upbringing as my brother yet he doesn’t worry to the same extent as I do – so is it a gender thing? Is it nature or nurture? I don’t know.

The worries I live with on a daily basis now are obviously different to those I had a few years back – the money worries I used to think I had were nothing compared to those I have now! But worry is all relative. My money worries are no more or less important than anyone else’s because they will be just as stressful depending on different scenarios. Those with children or new homes or a broken boiler or a flat tyre or a lost wallet – all worthy causes for worry. But referring to my earlier CBT task, the worries I found myself writing down daily didn’t seem to have any next step scenarios. They all had more long-term outcomes so seeing them written down in black and white over and over every day  oddly enough made me worry more! Oh Hannah Green! So long story short I’ve stopped writing my daily worry diary until I can ask some questions about how I can approach it differently…I don’t want to fail my targets…yes, I turned up to my last session feeling like a naughty school girl because I’d not met all my targets and honestly, at the age of 31 I felt so bad, like a detention was waiting for me! My lovely therapist laughed at me when I told her and just said that was my problem, I worry about things I shouldn’t worry about….but honestly, that’s me and I know that has to change in order for a healthier mindset.

Worry can be irrational – I mean, my biggest fear, well one of them, is bears. Not teddy bears but the kind that can run, swim, climb trees…you ain’t getting away from one of those bastads if you disturb its cubs – have you even see The Revenant?! Yet I have learnt that trying to squash someones worries isn’t helpful, you may be trying to help them, goodness knows I’m sure I’ve done it so many times but the best way to help is to just listen, offer a hug and tissues to wipe the inevitable tears and then throw in a good old quote for good measure – finishing with a laugh always helps!

Worry is something that will never be extinct in our world. New fears and worries occur every minute of every day for people and sometimes they’ll be worries they’d never dreamt of. Watching the news over the past few months and witnessing the horror of the various terror attacks across the world but mainly in London and Manchester, in places and situations so close to my heart, it’s unthinkable how many people will have been affected by the atrocities. So many of the survivors, the emergency services, news crews and witnesses will be now living with the effects for days, months and years to come. They will be experiencing worries and fears that hadn’t entered their minds before, yet for some they will now be devouring their existence. However, when I’ve read reports and watched interviews I am amazed, encouraged and proud to see how many of them approach these fears by fighting, not taking flight. Facing their fears head on and getting back to their daily lives – going to concerts, returning to Borough Market, walking over London’s bridges.

This is not how everyone will respond to fear and worry, fight and flight are both two very valid responses – I’ve done both at varying points in my life and neither were wrong choices. What I mean is, the human race is amazing. We support each other in the choices we make and help each other take steps forward to reach our end goals, worry will always be there in one form or another yet it won’t beat us. It won’t beat me.

And now comes the toughest part of this blog – what worry quote to end on, there are just too many good ones to choose from hahaha!

 

Have a fab week fellow worriers…or should that be warriors?!

#hairlesshannah

A very spoonie-fied blog

I’m sorry I’ve been absent for a while – well, almost a month now. There is no real excuse, especially when I know how writing helps me, but I just haven’t had the urge to write, I’ve had a slump and I thought that rather than force out blog posts that I didn’t really believe in, I’d stop. Pause. Take stock and tell myself it’s okay to take a break and come back as and when it felt right.

I am disappointed in myself that the month of May has been the time for this period of nothingness because it’s an important month for ME/CFS. May is ME awareness month as well as awareness for many other hidden illnesses. I’ve watched and followed eagerly how my little spoonie online community have raised awareness and done so much for the cause. Next year I will do more but for this year, all I can offer is this blog post.

I’ll start with a little fun fact; May 12th was Florence Nightingales birthday and it is suggested that she was one of the earliest sufferers of ME.  From 1857 she was often disabled by ill-health and spent much of her time bed bound; she is now considered a kind of patron saint for this under studied illness and this is why May 12th is used as a day for awareness. How about that eh?!

I then thought I would recap the main facts about ME, so I have used the main websites that I find useful and informative to provide you with the following:

The National Institute for Health and Care Excellence (NICE) provides three levels of severity for ME: mild, moderate and severe. This is how they explain them:

  • People with mild CFS/M.E. are mobile, can care for themselves and can do light domestic tasks with difficulty. Most are still working or in education, but to do this they have probably stopped all leisure and social pursuits. They often take days off, or use the weekend to cope with the rest of the week.
  • People with moderate CFS/M.E. have reduced mobility and are restricted in all activities of daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities. They have usually stopped work, school or college and need rest periods, often sleeping in the afternoon for one or two hours. Their sleep at night is generally poor quality and disturbed.
  • People with severe CFS/M.E. are unable to do any activity for themselves, or can carry out minimal daily tasks only (such as face washing, cleaning teeth). They have severe cognitive difficulties and depend on a wheelchair for mobility. They are often unable to leave the house, or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed, and are often extremely sensitive to light and noise.

I come under moderate. I won’t go on about my personal experience because I feel I’ve done that enough in previous blogs. However, progress has been made in that the 4-6 month wait for CBT has been destroyed and I have already had my first two sessions. Now, I know there is much debate about the usefulness and effectiveness of CBT for ME patients and I must admit, initially I was wary. But you know what? This is the only thing, the only offer of help I’ve had from the NHS so I am grasping it with both hands. I’ve gone into it with an open mind but also with open eyes. Luckily I made an immediate connection with the therapist and I trust her – both a bonus when you consider all the bad luck I’ve had over the past 20 months! We have set targets together to try to help me with my sleep – not working yet and as she predicted have made things worse before they hopefully get better. I like her because she is honest. There’s no BS, it might work for me, it might not but with everything crossed it could improve on what I live with daily and that’s enough for me thank you very much!

  • ME is a chronic illness which means it is long-lasting with no cure or guaranteed treatment.
  • ME is a physical disorder – having ME is NOT a state of mind and there is real scientific proof for this.

Life with ME has made me reevaluate everything about myself and my life, I guess a life changing illness will do that to you. It’s a terribly lonely illness. Yes I am surrounded daily by my wonderful family and I have constant contact with friends but I don’t have that connection with people anymore. I don’t have work banter, I don’t have social banter or random chats with people you may see when you’re simply out and about. I spend A LOT of time alone, sleeping, thinking…and that is lonely. It’s isolating and it makes daily life tough to face.

Raising awareness of illnesses like ME is so very important. Even doctors don’t know very much about them and patients – including me – often have to educate their GPs and specialists about possible medications, treatments and symptoms. It’s a frustrating situation that can be made easier by more people being educated and therefore having an understanding of what sufferers are living with on a daily basis.

Thank you for reading, thank you for baring with me and thank you for your continued support.

Have a lovely weekend.

#hairlesshannah

 

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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.

millions missing.jpg

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.

13 reasons why 3

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

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