An open conversation

I feel like I need to start this blog with a little trigger warning as this post deals with topics about mental health, morbid and suicidal thoughts. 

During 2020 and continuing into 2021, there has been a huge emphasis of shining a spotlight onto mental health, and rightly so. 

The pandemic has shone a light onto the impact that many varying factors can have on someone’s mental well-being. I’ve written before about how our brains should be cared for just like we care for other parts of our bodies but that for some reason, if we need to medicate our brains because they’re struggling, there’s a stigma attached and an element of embarrassment and shame.

I have been writing in a separate diary over the past year as an activity to help me with my mental health and until now, haven’t felt strong enough to transfer some of my thoughts and feelings into a blog post. I wasn’t sure if me writing such an open, personal post was the right thing to do, especially as I am still learning to deal with things at the moment. Will it make people pity me, will people think I’m attention seeking, will it grow the stigma that M.E is a “psychological” illness? I guess there is a possibility for all of this but ultimately, I feel like it’s an important post to share, just like I have every other aspect of my life over the past five and a half years. M.E is a physical illness that has a huge impact on mental health; the complete 360 change it has on lives coupled with being under researched and underfunded leaves those with the illness feeling abandoned and alone. People living with M.E often feel afraid to speak openly about the impact it has on mental health and that’s why I, along with my families support, decided to write and post this blog.

A while back, I watched three documentaries on TV, one about Caroline Flack, one by Roman Kemp and then the Oprah interview with Meghan and Harry. As I was watching them, along with the heartbreak I felt for the people featured and their families, I couldn’t help but feel a deep sadness at seeing so many similarities being mirrored back at me.

Lockdown has been tough on everyone, we all have our stories to tell, we all know someone who has suffered. For me, it lead me down a path which was quite frightening. I’ve always been open about the fact I’m on antidepressants. Living with M.E. has had a real impact on my mental health. The lack of understanding and help from the medical professionals has left me feeling like I’m fighting a losing battle and antidepressants helped to level me out. However, during lockdown, those antidepressants started to lose their magic.

The buzz around mental health is that we all need to talk. But how do we start those conversations? If you really are in dire need of help, initiating that conversation feels like the hardest thing on Earth. I can’t tell you how many months I suffered in silence, not knowing how to verbalise how I was feeling to the people I needed to reach out to. Convincing myself that it was futile trying to reach out and talk because ultimately it felt like there were no answers or solutions to my situation. When those thoughts and feelings appear to be that big, reaching out and talking is not easy. 

I ended up on a downward spiral, not realising that my thoughts of feeling lonely, sad and helpless had seamlessly turned into thoughts of, it would be so much better for so many people if I wasn’t here anymore.  And all of a sudden, there I was, in a scenario of finding comfort in the thought that I would be helping those I loved, if my life ended. They wouldn’t have me as a burden anymore, they wouldn’t have to adapt their lives for me, they wouldn’t have to look after me, fill in forms for me, listen to my woes and comfort me. No more frustrating doctors’ appointments, no more researching specialists, no more endless talks about how to help and support me emotionally, financially and physically. I could remove all of that by simply removing myself. 

I was aware that I wasn’t really sending my usual responses to texts from friends, I was definitely quieter in myself and felt like I just needed my own space but equally was pretty good at putting on a smile, trying to keep busy and distract myself. On the face of things, I’m sure I would have appeared fine but underneath there was a deep hatred of myself and my life and I no longer felt like my contribution to life was of any importance.

Luckily, in the week where things were starting to bubble over, I had a CBT session booked in and it all flowed out. I guess, although I have a trusting relationship with my therapist, she’s still someone detached from my life whose job it is to listen to me so I didn’t feel like I was burdening her by offloading. She explained to me that she thought I was experiencing ‘morbid thoughts’ rather than suicidal thoughts because I explained I hadn’t seriously thought or considered how to end my life, more of, if I did die, that was fine in my head. However, there was clearly something urgent that needed attention because the lines between morbid and suicidal thoughts can blur quickly.

Eventually I was referred for a phone assessment (because…Covid!) at a mental health hub which, of course, has a story to it…somehow there is always a story to lighten these situations with me isn’t there? The assessment had endless questions, some leading back to my childhood but the one that ended in me telling the assessor he was talking absolute bollocks was this: he made the link that my brother is almost 7 years younger than me. He explained that in his experience, parents who have a daughter first and have a big age gap between children are often disappointed as they wanted a son. They try and love the daughter as much as possible but in the end, try for another child and if they have a boy, which is what they always wanted, they give all their love and attention to the boy and the first child and daughter gets pushed aside and feels unloved and that’s where a lot of feelings of rejection come from…..YES! THIS IS WHAT A TRAINED PSYCHIATRIST SAID TO ME! I kid you not. The assessor didn’t react kindly when I told him he was speaking absolute bollocks and I’d like to move on to the fact I have a chronic illness and needed some actual help!

Anyway, eventually I’ve ended up on an extra anti-depressant added in top of the one I already take. They help for sure, and I know I am in a much more level place but admittedly I am still struggling. I still find it hard to talk about it, life seems very overwhelming and scary and daunting a lot of the time and I’m still in a position where I struggle with that because there really isn’t a whole lot that can be done to improve that. I also find myself often brimming on the verge of tears which isn’t helpful if you need to talk and explain how I’m feeling and what I’m thinking.

But circling back to the documentaries I mentioned earlier, I watched them and each of them hit home for different reasons. Listening to Carline Flack’s mum, sister and friends was heart-breaking: seeing the impact of her no longer being here showed me that by taking my life, I would eradicate my own pain but leave the ones I love the most with more pain and changing their lives forever and not for good. But hearing how Caroline never reached out and never asked for help…I got that too, having been that low, I can totally see how when life feels that overwhelming, you can only see a few options. The British press cornered Flack into blurring those lines from morbid thoughts to suicidal thoughts to actioning them. And that’s why I felt so sad for Meghan Markle too – how dare online trolls and “celebrities” like Piers Morgan decide that she was ‘making it up’ to get sympathy. This is exactly why there is a stigma and people don’t talk because if we do, we are seen as attention seeking or lying. 

And then watching the Roman Kemp documentary, that made me start to think about writing a blog because he spoke about the importance of sharing our stories and experiences because we need to end the stigma. We need to openly talk about the places mental health can take us and by sharing our experiences, we may just help someone else in that situation.

I know what I am writing here seems very bleak and worrying and it is, but I think it is also key for you to know that sometimes, people who are on anti-depressants can have days and weeks or months and years when we are okay! We don’t always want or need to talk about our situation (s) and sometimes distraction and pretending things are okay is the best way to be because sometimes faking it until you make it is the best way forward. I can be my own worst enemy and not openly ask for help or initiate conversations and struggle alone but equally sometimes I am perfectly fine.

Deciding to post this blog now seemed like the right time as I’m approaching my 35th birthday. There have been times in the last year when I genuinely didn’t think I’d be seeing this birthday and equally didn’t want to. Times when I found comfort in the fact that I may not have to go through another milestone whilst feeling so sad about all the things I haven’t experienced and may never get to. However, I am now starting to see my 35th birthday as a milestone I will be reaching and I will be experiencing with all the people I love and who love me. Yes, I am still carrying so much sorrow and pain attached to so many things that I can’t really go into but the difference is, I can acknowledge these feelings but still want to exist. I struggle so badly with not knowing how on Earth I get to move through all of this but then, who does? I am so very lucky in so many ways and this birthday is one to celebrate and one to acknowledge.

M.E is a tricky illness on so many levels and I guess lockdown has impacted me in the sense that I will often offload to my friends or my brother when it naturally comes up in conversation. I couldn’t or didn’t feel comfortable doing this during lockdown via Skype or Zoom, over the phone or text, those types of conversations, I felt, needed to be in person. Being single with M.E means I also don’t have that partner to share with, to confide in and lean on and that’s tough too. Now, don’t get me wrong, as I’m sure I mention in almost every blog post, my parents are the greatest but having this conversation to their faces, as my parents, the thought alone of sharing how dark my thoughts were, was too upsetting because I knew how it would impact them and make them feel. Especially in lockdown when they themselves couldn’t escape the house, talk to their friends or have the release of swimming and golf to use to deal with the “home/daughter” situation! And at this point, I’ll say it again, talking about mental health is not easy. Starting that conversation is not easy. Dealing with the outcomes of those conversations is not easy. And I still don’t know the best way forward or how to appropriately deal with matters of the brain.

I suppose the reason I’m writing this blog is for a few reasons. One, if you don’t feel like you can reach out and talk to anyone, sometimes writing down how you feel helps or reading other people’s experiences let you know you aren’t alone. Two, there is help and support out there. Medication can and does help if you’re on the right dose. I’m not ashamed to be on them but equally I struggle with the idea that it’s medication that keeps me buoyant and that if I wasn’t on it, my depression would be all consuming and that makes me sad. Three, there might not be solutions to your problems but finding a way to somehow share and talk, it does help and it does lighten the load.

And now, although things still seem quite heavy and never ending, I try to focus on the reasons why I am here and what I contribute to people’s lives in a positive way rather than convincing myself of the alternative. The mind is such a powerful beast, it’s so scary how it can persuade you that your friends think you’re boring and not worthy of their time, how you’d be better off dead than alive because you’d free people of the stress and strain of their relationship with you. But then I am also realising what a beautiful thing your mind can be with the right nourishment, being kind is so important, not just to other people but to yourself. And I guess that’s what I find hardest, learning to like the person I am and the life I lead with M.E, learning to be kind to myself and not mentally bullying myself if I can’t do what I set out to on any given day. With M.E there are many things that my mind wants and can do but that my body simply can’t and that mis-match is a daily battle.

I don’t have all the answers, I still very much feel like I’m slap bang in the middle of my mental health “issues” and it’s a daily slog to keep myself balanced. Coming out of lockdown feels a hell of a lot tougher than it felt going into it, my life was already on a type of lockdown but coming out and seeing people starting to return to a certain degree of normal, that’s tough. It’s like being left behind or not included in a massive party that everyone else is enjoying. And of course, there are some wonderful elements to lockdown easing, being able to have garden visitors again is just wonderful. But, as always, for us spoonies, it’s the reintroduction of pacing. Pacing that we haven’t had to do for the past year. I always knew human interaction wore me out more than most activities; active listening, the hubbub of lots of people talking – it’s the sensory overload that does it for me. 

So now, it’s about having to think carefully about what I do within a week, if I have visitors, I need days either side to rest and I may need longer than that. Having to spend time thinking about how to balance seeing people which lifts my spirits with taking on orders, I simply can’t do it all. And then there’s going out. The anxiety I feel about that is high. Partly because I have only left the house 9 times in a year so the outside would feels quite daunting but also because going out uses up a whole different set of spoons. Getting up, dressed, out, travelling, considering if I can actually be outside because of my facial pain and the sun/wind etc. Activity time whilst I’m out, travelling back and then getting home. The idea of having a change of scenery and being elsewhere is utterly wonderful, the reality is vastly different.

They’re considerations that all greatly impact my mental health. Knowing that seeing people and going out will be a positive and lovely thing to do but equally knowing that the planning and anxiety surrounding and potential fallout from it, well, it’s exhausting. It’s a continuous circle of thoughts that I haven’t missed one bit. But, it’s another hurdle to jump and one that will be taken in slow, steady stages and that’s ok. At my own pace, in my own time, I’ll get there.

If you feel you are struggling and need to talk to someone detached, here are some organisations and numbers you can use. Please use them and please know you’re worthy of that help.

Mind: 0300 123 3393 or text 86463

The Samaritans:  116 123

CALM: 0800 58 58 58

Young Minds Parents helpline: 0808 802 55 44

Hannah x

Advertisement

Lockdown

2020 is not how we planned it, is it? Not one person could have predicted how this year was going to go and, let’s be honest, I doubt many of us can predict how each week is going to pan out at the moment!

Lockdown 2020 taught many people many things. We were all forced to stop, take a rain check, have more of a work life balance, take time to check in with family and friends more often, play games, enjoy nature, take up new hobbies.

For some, and what I’m focusing on today, it prompted them to have a deeper understanding of what life with a chronic illness is like. Having restrictions put on their lives. Having to cancel holidays. Having to cancel birthdays, social gatherings, concert tickets…the list goes on. Even the wonderful Miranda Hart spoke out on our behalf!

At first, I took real comfort in the fact that for the first time in many years, I WASN’T missing out on things because no-one else was doing anything that I had to miss, or cancel at the last minute. I didn’t have to feel that pang of disappointment in missing out or being left behind. Everyone, on some kind of level, was experiencing what my life had been like and that made my daily life, selfishly maybe, much easier. Of course, I really did feel for everyone because I know what that feels like but of course there was always that element of, once this is over, you’ll absolutely be able to do all of those things and it’s important to remember that the majority of the things you’ve cancelled, haven’t been cancelled, just postponed.

But for me, this year, this lockdown has become one of the toughest times since I’ve been ill. The hidden aspects that people can’t see have been the worst ever. The pins and needles that I flippantly mentioned returning have been worse than ever. They’ve become what feels like a prison sentence. So excruciatingly painful that I have only left the perimeters of my home 5 times in over six months and those times have only been for short drives and home again. I haven’t even been able to sit and enjoy our garden. I can’t bear a mask on my face but I don’t feel safe without once so that leaves me stranded too. I have, quite literally, been inside my home for six months. The one time I tried to hang my washing out in the sun, it brought me to tears. The sunlight on my skin feels like molten lava. My sleep is worse because if I turn over and have pressure on my skin, it’s like someone has grabbed my skin and pinched every part with all their might.

And because of this, I’m afraid to say I have become a little bitter. Lockdown eased and some level of normality has resumed for many. A different normal but a normal that’s more fun and social. Only now, I see my little community online feeling battered by this because, oh how quickly some forget. When the whole of society was in lockdown it was easy to relate. To feel sorry for. To empathise. To find time.

For me and for many like me, we are still confined to our homes. Yes, I am terrified of covid, not because it could kill me strangely enough, but for the gut wrenching fear it could make my illness worse. It terrifies me that young people, my friends, could get it and have their lives changed like mine has.

But regardless, covid or not, I still wouldn’t be able to resume my life before; pins and needles for one, but on another note, covid has set me back by what feels like years. Because I haven’t seen people, socialised, been out anywhere, the fatigue is more plaguing than ever. I’m quite good at covering it now but I am well aware that I am beyond irritable a lot of the time, I’m not able to wash my hair and shower as often (dry shampoo is my new best friend). My pacing is having to be to the extreme. Whatever I do, I am doing at home, typically I am up and out of bed for roughly 9 hours out of 24 and within that I rest every afternoon. I pace my activities, typically without any music or television because my brain fog and concentration can’t cope with the overload. Having to meticulously plan out my week – if I’m having visitors, can I bake that cake. If I make that bunting, can I see that person?

Life. Is. Hard.

I have never felt so alone. So isolated.

Tomorrow, Monday 5th October, marks five years since I had the asthma attack that sparked all of this. It seems almost impossible that five years have passed, impossible that I am still so far from where I want to be.

Contrary to how this blog may seem, I am not a jealous person. I am not a negative person. I am just a desperate person, someone who is literally treading water to stay afloat. But as mum has pointed out to me, no-one ever gets to see this side of me because if you come to spend time with me or text to check in, I’m not the type of person to moan or complain or say woe is me. I’m not going to harp on about my problems and feelings because I know everyone has them and there are so many much worse off than I am. I will make you cups of tea, sit and listen to you, smile and bring you treats. You won’t see the before and after effects. Plus, I haven’t written a blog in a while which tends to be my outlet and way of keeping people updated and aware of what’s occurring.

And I have to, and do, remind myself of how lucky I am, because, as always, my life buoys have been my lockdown buddies; my mum and dad. My constants. The ones who hold me up, make me laugh, hear me cry, see my pain, feel my frustration and take it all on board even though there is quite literally nothing anyone can do. And that must be beyond difficult for them, to feel helpless and I hate that I do that to them. Nothing is easy.

And therein lies the fear. Everyone kept saying during lockdown and even now, “it would be so much easier if there was an end in sight.” And of course, yes it would. But, regardless of how long this goes on for, social distancing, mask wearing, hand washing, life postponement, it WILL all come to an end. But for me, and many others like me, we will still continue to not have an end date, and that is utterly soul destroying and at times, unthinkable.

So, we will keep smiling and keep battling and being our own self advocates and keep hoping that one day things will get easier.

But if you aren’t in lockdown anymore, try and hold onto what it taught you. It’s a life lesson we hopefully won’t ever have to live through again but could influence many generations to come.

#hairyhannah

Image

Mental Health

This week is mental health awareness week. Mental health has never been something I’ve ever really thought deeply about, yes, you know you have to “look after your mental health” but what does that really mean? But before I start, I would also like to add in a disclosure here to say that this blog post is based around my experiences and opinions and therefore, if you feel you need help and advise, please go and see your GP or use one of the numbers at the end of the blog. This blog is focussed on mental health linked to my experience of having a long term illness and therefore some of my thoughts and opinions won’t marry up with other people’s mental health problems. Nothing I have written is there to offend or upset anyone.

I suppose mental health is something I’ve considered more since my own has become an issue since becoming ill. I’ve always been a glass half full kinda girl and do try, as much as possible, to focus on the positives.  But sometimes, that just isn’t enough to see you through. Positivity is not a medicine and depression, along with many other mental health issues are not something you can simply snap out of. It’s an illness not a choice.

I started taking anti depressants about a year ago now however, I had been offered them as a “treatment” within the first or second appointment I had when I returned to the UK.

All too often I think that anti depressants are prescribed too easily. Don’t get mad at me, I don’t mean that to be an offensive statement. When prescribed properly they are wonderful however, in my opinion, sometimes, they are used as a quick fix and for me, this is dangerous. There are so many other avenues to explore first but because of lack of money, resourcing and time, those options are often not accessible. Waiting lists to see councillors on the NHS are months and months long…when you need help, advice or just someone to talk to, this just isn’t good enough. GP’s have 10 minutes to see you, assess you, talk to you and give you a course of treatment…prescribing a pill is often easier and quicker than making another appointment to talk or write a referral letter.

My initial approach, which I do still stand by to an extent, was that I didn’t need anti depressants, anyone in my situation would be finding life a little tricky in my situation and I just needed some support. However, as time passed and life didn’t get easier and as the reasoning behind the use of anti depressants in my situation was explained, together, myself, my parents, my doctor and psychologist agreed it was time to give them a go.

This wasn’t a quick fix option, it took months of trying various ones to discover which was my best fit. I had severe reactions to some and others just knocked any kind of emotion out of me which I hated. Eventually I settled on the one that suited me and my body best and even that has it’s side effects. I have been monitored and guided through how and when to take them and know that as and when the time comes when I want to come off them, I have to follow a careful plan to wean myself off. They have helped me greatly, I am more balanced and am able to approach my daily challenges without feeling like an emotional wreck. I have most definitely been very depressed at times and have hidden it well but the team around me, including my CBT therapist, recognised this and suggested them only when it was clear they were the next step.

My point is, they are not a quick fix. In my opinion, they should not be a first option.

I think I have gained a much deeper understanding of mental health and the importance of looking after it through my own experiences. CBT has taught me about unhelpful thinking patterns and how to turn negative and unhelpful thoughts into more rational, level thoughts and this has made a huge difference to me. Being ill has also taught me the true importance of taking a step back, no matter how busy you are, in order to care for yourself. Whether that be having a bath, going for a walk, meditating or writing a journal, doing something for you and only you every day should be at the very top of your daily “to do” list.

There has been so much coverage in the press about mental health recently and that is fab. Talking is what we all need to do more of. The good old saying of, “a problem shared is a problem halved” really is true. But that doesn’t mean it’s easy. If you are feeling low, many people, including myself, don’t want to burden others with these thoughts and that in turn makes everything worse. But if you don’t have enough time with your GP and you’ve got to wait X number of months to see a councillor, then you need to find someone else. It doesn’t matter who, just find someone. Don’t suffer alone because that makes it worse.

And, if you’re like me and you sometimes find it hard to start a conversation, write it down. Write a letter or an e-mail and send it to someone you trust, get those channels of communication flowing. I often find it easier to write a blog post, have my family and friends read it and then that starts up a conversation.

Our mental health can be affected by so many varying factors: stress, work, grief, loss, illness…the list goes on. There is no one size fits all solution. But what I can say is,  I have a lot of people in my immediate circle of friends and family who have had to deal with or are dealing with huge, life changing situations and they are still standing. Just about. And that’s because they’ve talked. They’ve not been forced to talk but they’ve talked when they’ve felt ready and more importantly they have been told that there are plenty of us ready and waiting to listen.

So much emphasis is placed on the person with the mental health issue but it’s important to remember that every single one of us needs to be aware too. All it takes is a simple, “how are you?” or “I’m thinking of you,” or “fancy a chat?” or “I’m here when you’re ready.” We all need to know who our “people” are. Sometimes we assume that people just know this, but occasionally, when you’re feeling that low and lonely, you just need to hear it or read it. Sometimes, it’s easier if someone reaches out to you rather than the other way around.

I’ve written about loneliness before. It can be all consuming. I would never have thought I could be lonely, I have so many wonderful friends and my family is incredible. I live with my parents yet some days, it feels like it’s just me. Just me, alone, with no hair and a life that doesn’t resemble anything that I recognise. So when my phone pings with a text just saying, “hey, how are you doing today?” it opens up a line of communication, a line to the outside world that allows me to participate. Allows me to be honest. Allows me to feel less alone.

Mental health is not linear. I cannot plot how I am going to feel from one hour to the next let alone day to day. But I also ensure that I keep in touch with the rest of the world too. I am not the only one with problems and issues. I am not the only one that can have a bad day. My bad days should not be given any more or any less importance in comparison to other peoples. Everything is relative. Even well people have crappy days where they need to vent and talk. We are all important.

But regardless of these good, bad and ugly days, what I do know, is that the world keeps turning. Days turn into nights that turn into new days. We have to keep putting one foot in front of the other. I was reading about loss and grief the other day and I read something that made an awful lot of sense to me. It said that when you experience loss or grief, that doesn’t go away. It doesn’t ease with time. You carry that loss and grief with you every single day but what does happen, is life starts to grow around it. You build memories and store happiness around that loss so that it becomes more bearable.  And I think that’s the important part – life.

So, if you don’t do anything else this evening, I would ask you to do two things:

  1. Text someone you haven’t heard from in a  while, or pick up the phone and give them a call. Ask how they are. Have a laugh and share a story about your day. Be present.
  2. Do something for you. The crossword, a sudoko, have a bath or read a chapter of your book. You are important.

And also, if you do know someone or if it’s you that needs some support, here are some places where you can find it:

The Samaritans UK (for everyone) 116 123

The Silver Line (for older/elderly people) 0800 4 70 80 90

Childline (for children and young people under 19) 0800 1111

Papyrus (for people under 35) 0800 068 41 41

Or visit http://www.mind.org.uk for many useful resources, support and help.

Happy Tuesday everyone.

 

#hairlesshannah

Image

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.

hidden 1

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