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

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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

 

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

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Troubled mind…

I’ve been having trouble recently, trouble with my brain. My mind. I’ve been spending a lot of time in pain, both during the day and the night where the pain is so unbearable I can’t find comfort and so I have all this time on my hands to think and ponder. Specialists have suggested as a next step that I start seeing a psychiatrist – I know, scary word – but the explanation as to why try this is actually beginning to make sense to me.

The immunologist explained it like this. People bandy around the word stress but when stress is acute it can actually cause physical effects on the body which can linger long after the actual cause of stress has gone. For example, we think we can almost 100% say now that the stress that was the catalyst for all of this was the new job in Dubai and the lack of support I received. But that was over sixteen months ago now so when doctors kept saying stress may still be a cause, I just didn’t understand. But, stress to that level will have had a physical effect on my body i.e. the asthma attack I had and the recurrence of the glandular fever. Stress can manifest itself in so many different ways and because it alters some of us physically: our state of mind will also change along with it i.e my life has never gone back to being how it was before.

However, we/doctors don’t often see the brain as a part of our body that needs treatment. It goes unnoticed until the word mental health or depression is mentioned and then there is this huge stigma attached to it. Initially when the word psychiatry was mentioned I automatically thought they thought I was bonkers. But no, it was a medical professional acknowledging that what I am going through is having a profound effect on both my physical and mental being. That there is a chance that by treating my mind, by looking at calming me internally, targeting the potential stress triggers that may be lingering, it will potentially have an impact on my physical symptoms.

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It has taken me weeks to get my head around this and I’m still not sure I trust in it totally – I want someone to help me with my pain, with this new life – I want a cure, I don’t want to be managed! But, I guess in the meantime all I can do is trust the healthcare professionals dealing with my case. This idea has sparked something in me though because although I write this no holding back blog, I do hold back. I hold a lot back actually because I STILL continue to worry about what people may think about me, what they may say behind my back. But that isn’t healthy and I know that, and that doesn’t mean I’m going to start divulging every little thing about my life that may or may not still be clinging onto my brain awaiting exorcism so I can move forward, far from it! I just mean that I should write about things I want to write about without fear of who will read it and cast opinions – we can’t all agree on everything and I am under no disillusion that my blog is exempt.

So this is a new blog post from a somewhat pain-clouded Hannah who needed to get something off her chest that has been clinging on and has been causing stress and upset for far too long now. So here we go, attempt one at looking after my mind and being true to myself!

“You’ve got too much time on your hands” was a sentence thrown at me in the early stages of falling ill. Apparently too much time to worry and over think things and therefore be way too sensitive to suggestions made by this particular person. I’ve never openly written about the demise of this friendship because I’ve been too worried about mutual friends etc. It has been suggested recently by professionals that this may possibly cause emotional stress because I’ve held onto the hurt and pain for too long without properly getting rid of it. I know that I’m too cautious of other people’s feelings to the detriment of my own.

I’m definitely not here to rip to shreds a friendship that I cherished very dearly: I suppose that I have just had more time to think about the downfall of said friendship now that enough time has passed for me to not feel so bitter and tormented about it. As I’ve thought about it more, I’ve realised that it was this friendship that has in turn caused other insecurities to creep in more recently about the strength of other relationships I have. Isn’t it funny how we can let one person colour our views and opinions of others? How comments made by one individual can sway and impact our thoughts, feelings and outlooks? To my knowledge, only one ‘friend’ has ever questioned my illness. But that is all it took. That was the start of my self-doubt because hell, if someone who I was so close to can think that all I needed was a “kick up the backside” then surely others must feel the same too? As things have got worse over the past few months and I’ve been able to do less, as people’s lives carry on and mine doesn’t, I’ve questioned whether people think I’m just dragging out this façade and are just getting fed up with me.

As I’ve said before in my blogs, I know I am far from perfect, I know I have my faults but I do self reflect a lot and if I’m wrong or cause hurt then I am happy to hold my hands up, talk things out and move forward. But, as I have also said before, my friends, my close friends – they become my extended family because, as I have found out, when the chips are down, it’s your friends as well as your family that will literally drag you forward kicking and screaming. Sometimes I think we only see the good in people because we love them and although this particular friendship is done and dusted, this is by no means reflects on the years of happy times we had.

However, the hurt I felt when this friendship unravelled was similar to the pain I felt when I split up with my ex. After all, we had a relationship, we shared our lives – ups, downs, tears, laughter, travels, weddings, babies and everything in-between and I would of course do it all again. I have spent hours thinking about what I did wrong for this friendship to have failed so miserably but you know what, all I come back to is the fact that I got sick. She didn’t believe me, she didn’t have time to support me because of her own life and in the end she tried to turn it back onto me because she didn’t have the guts to see that she was in the wrong. Now, I get that people have busy lives, ALL of my friends have jobs, most are married and some have children yet ALL of them have managed to text, ring, send post and come visit me, we have maintained our friendships as two ways streets. They made and continue to make time because a) they want to, b) they know I’d do the same for them and c) we make time for those we care about whether they are blood related or not, whether we have 23 hours of our days for the next 6 months planned out already – we simply make the time. End of. No excuses.

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I may feel like I am at my weakest at the moment, I’m currently writing some of this at 1.37am whilst in excruciating pain, but it’s these times that give me strength. Strength to know that I did nothing wrong in this specific situation, I can finally see that now and I need to get it out there in order to let it go.

But because I’ve had time to think and look back over the last sixteen months I can quite clearly see that only one person is no longer in my life and everyone else has mysteriously stuck around. So that tells me something: my friends do believe me, do trust me, do love and support me and do want to help me gain strength within this new life I find myself living. I’ve had time to read countless blogs about people living with chronic illnesses who have lost friends via similar circumstances. Why is that? Why in the time we need these friends most do they desert us? I really can’t come up with an answer and that is the bit that still hurts because I will never know. It just appears that because we suffer with a hidden illness, some people think that tough love, harsh comments and causing tears will snap us out of this situation we’ve ‘landed ourselves in.’ And you know what – shockingly, that doesn’t work because we are actually are ill. We can’t be magically cured, we need to be trusted, loved, supported and above anything else believed. Because if you think we are vying for attention believe me, there are soooo many other ways of doing it without making ourselves broke, medicated up to the eyeballs, missing out on life in general and getting depressed.

Make it your task this weekend to tell the people you love how much you cherish them, make them feel loved and make time to send a text to a friend you may not have spoken to in a while. Those little things are so much more meaningful sometimes than the bigger gestures.

Have lovely weekends.

#hairlesshannah

Unwanted visitors

So many people I know have had some, metaphorically speaking, unwanted visitors knock on their doors lately that you can’t turn away or shout at or send an e-mail to because they are part of you. Illnesses, diseases, things that you can’t slam the door on.

I am obviously purely speaking about my situation and therefore my experiences, feelings and emotions so they may not correlate with anyone else so don’t get cross if you don’t agree!

My illness is hidden so I find myself in a situation where I have days when I look better than others which seems to indicate to people that I’m getting better. I’m not. That is why it is called a hidden/invisible illness and that is why it is so frustrating. I think I become even more prone to this kind of comment because I don’t show my true feelings and emotions so therefore it is even easier for people to assume I am getting better and feeling great. I’m not.

Because my ‘complex’ case is STILL under review by many doctors and specialists, it seems like I am forever waiting for answers, fighting tirelessly to get people to fight for me! I’m 16 months into this now which I know is a long time. So much can happen in 16 months and has done to most of the people in my life – good, great, bad and bloody awful. But it also means that due to no fault of anyone, and I mean that wholeheartedly, life goes on. My life is stuck but other people’s aren’t. So therefore I have become lonelier, felt more isolated and even more desperate for healthcare professionals to take me and my life seriously and help me.

But it seems that healthcare professionals, even those at supposedly the best hospitals in the country, don’t feel or see the urgency in my eyes. I am acutely aware that what I have is not life threatening and don’t ever want to compare it to those who are living with those illnesses or are no longer with us because of them, but what I am living with is totally life changing for me. Last week I met with the first doctor in months that actually listened, took time and an interest in me and gave me hope. Only for that to be totally shattered when he phoned me Friday to tell me most of what he’d said was incorrect. The referral will take months and even then may not be accepted as it has to go through funding applications and that the help he’d promised in the interim was for those who live in Southwark only – when did I ever tell him I lived there?! So here I sit once again, being totally let down by the only people who have the power to help me.

I don’t recognise my life anymore. I described it this week by saying I feel like I have an existence, not a life. Most of the doctors and specialists fail to see me as a human. As a 30-year-old woman who has so many hopes, dreams and aspirations,  who’s existence is mainly lived out within the four walls of her bedroom. The pain I have is constant and worsening, I’m experiencing pain insomnia on levels I never knew existed. It takes an age to get up and get ready and in all honesty it’s taking all I have at the moment to even do this because really, bed is the place that comforts me most regardless of the pain.

In bed, I only have to move to change position and shift the pain locality. In bed it’s quiet, the curtains are shut and it’s dark. I can drift in and out of consciousness, cry or just contemplate and dream. If I’m up, I feel like I have to put a face on things, I manage to hide the pain because that’s easier than revealing the truth. If I’m up I can’t manage to do much which frustrates me. My hands are becoming even more painful so even typing for long periods hurts. All I really have is my blog to make me feel purposeful but creating the content for it often causes more pain than I feel the blog is worth. But then through the blog comes the communities I’ve become part of – the spoonie and chronic illness heroes and heroines that give me hope and strength are incredible.

The doctors don’t see the life that I seem to have left behind. I can’t drive, I can’t socialise, I can’t stay up late, I can’t shop or treat myself, I can’t save for holidays or beautiful bags and shoes, I can’t treat my friends and family, I can’t blare my music out and dance around my bedroom whilst getting ready for a girls night out. I can’t even drink a cider because of the tablet concoctions I take daily – it comes to something when a practically teetotaler is craving a cider! Lately, I’ve even come to wish I hadn’t experienced the life I had in Dubai because life was so good. Even though work is more than likely the trigger for this situation, socially life was amazing and the opportunities that fell into my path enriched me more as a person than I ever dreamed of, I had plans that were unfinished and unaccomplished which means I know what I’m missing and then I start to resent that.

I know there is no easy fix to this. I know there is a long road ahead and so much more uncertainty but all I can tell you is that I wish this bloody unwanted visitor would f**k off out of my circle as quickly as it arrived.

I read a quote another spoonie posted the other day and I loved it – it’s not me that’s unreliable, it’s my health.

Rant over! Be nice to people today and remember, they may be going through something that you just might not be able to see. So be kind.

Happy Saturday.

#hairlesshannah

 

That Don’t Impress Me Much

I have written this blog over several days/nights this week. Several long, tiring, emotional, painful days. I have to say, they have been the toughest so far. The mask has slipped – I cried in front of friends, in the middle of a restaurant one evening. I was mortified. Some of those girls hadn’t seen me cry since I’ve been ill. I’ve managed to keep strong and just try to magic away what’s going on and simply enjoy normality for a while whilst in their company. It didn’t matter to them of course, they were concerned about me but to me it mattered. It shattered that illusion that “I was fine.” But I adhered to my own advise and decided to leave and come home – I had taken on too much, hadn’t paced myself properly and hadn’t acknowledged that my symptoms were starting to worsen again.

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A combination of things have led to this moment in time. From my tenant letting me down last-minute so therefore having to find someone new to move in and incur the costs that go with this process. Since I’ve been home I have gone through all my savings and relied on the support of my family. I am incredibly lucky and I am very aware of that. We talked several times about the fact I should see what I may be entitled to but I guess out of pride, I never wanted to. But then, I thought, why shouldn’t I be entitled to anything? I am working two hours a week, have no savings and am relying on my parents who are both entering retirement and that just isn’t right. I know I have worked outside of the UK for a few years but I have contributed a lot to the system whilst working and living here so surely that counts for something? At the very least I should be able to contribute to the food bill or heating – (that bill must be considerably higher with me being home – sorry ma and pa!) So I bit the bullet. First I rang the citizens’ advice bureau who were very helpful and gave me the appropriate phone numbers. I felt quite positive but that was soon to change!

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I got through to a man who talked to me as if I was something he was scraping off his shoe. He was sarcastic and rude, presumptuous and self-righteous, unhelpful and unprofessional. I was honest about everything from working in Dubai, to telling him about my flat I am subletting. Yet I found myself having to defend my situation, explaining how I was a professional woman who had worked since the age of 15, been to university and qualified as a teacher. It is only now, after being ill for a year that I had contacted the benefits agency because I hadn’t wanted to abuse the system, however, things have become a little tougher, and I needed to find out what my options were. I had to defend the price of my flat which he scoffed at and asked how anyone would ever want to pay that price. He repeated several times, just to clarify, that I was single, 30 and unemployed! Yes, I am – and your problem is?! It was just an unbelievable phone conversation which actually really upset me. It made me feel like I was the scum of the Earth.

Following this phone conversation I have received roughly ten letters from various departments all stating different things – some requesting me to complete questionnaires, some stating I was unable to claim benefits due to renting my second (?) property and having savings in excess to the limit. There were many mistakes – I only have ONE property, I can’t afford to live in it so am living with my parents! I understand that my flat counts as savings and if I’m desperate I should sell it but that seems unjust somehow. I worked so hard to save and get onto the property ladder as a single woman and I don’t want to let it go. I then had a letter stating that the doctor’s certificate I sent was out of date and needed to send the next one (I hadn’t yet posted my doctor’s note!) I spent thirty minutes on hold to question this only to be told that when you register with them they count that as day one of seven days self certification and an automatic letter gets sent out saying that this “self certification is running out.” I told them that at no point in the letter was self certification mentioned and that the whole thing was badly written and very misleading!

I then received two text messages saying they had received my doctors note and that my payments would be out into the bank on my pay-day – result. Or not. It appears that when doctors certificates are sent in, that department assumes you’re in the system and sends an automated text informing you what has been received and that your payments will be continued. After another thirty minutes on hold this was explained to me and was told once more that actually, no, I’m still not eligible but that decision makers were still considering my case. Stupid, stupid, STUPID system!

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I have since had more back and forth phone calls and letters because they did my flat valuation incorrectly  – if their valuation was correct, I would be a very rich girl! It took Dad and I a while to decipher their workings and write a response. I was also informed over the phone when I was disputing this latest issue, that I needed to provide proof of my shared ownership because they’d assumed it meant I was sharing the ownership with an ex husband! Firstly, you made me clarify SEVERAL times how single I was and secondly, read the endless pieces of paper I filled in for you stating it was a housing association property!! ARGHHH! Now this was clarified (she didn’t like the fact that when she got her calculator out she realised Dad and I were correct so by this point she was being quite brusque with me) she informed me that I hadn’t sent in any proof from my mortgage lender or shared ownership company that they had agreed for me to sublet or that I was indeed sharing with them and not an ex….that is because nowhere, at any point was I asked to do so! But, this has now all been sent off and I am awaiting a response – what do we think all??  I feel this may, possibly, result in a big fat nothing!

And then there comes me. Me and my stupid body. It appears I am beyond most people’s help – no sarcastic comments here please! I became desperate last weekend. I have no idea if my symptoms have worsened because of a slight change in medications, whether the cold if affecting me or if I’m just simply getting worse. I now have a constant ringing in both ears and my noise sensitivity is through the roof. Lights are now even more painful and I am oh so glad that the darker nights have drawn in because there are more hours in the day where I don’t need my sunglasses on! The fatigue and muscle/joint pain is gradually getting more painful again but the worst thing is my head. I saw my GP two weeks ago where she informed me that in her opinion specialists most probably couldn’t be able to do anything and that the best thing I could do is ‘hope.’ Yup, you read that correctly, her prescription to me was hope.

Since Saturday the pins and needles have just gone insane, I now even have them on my eye lids making me want to reach in tear those bad boy eye balls out of their sockets. And on top of that it feels like my head is on fire. And I mean, white coal, pizza oven, scold yourself on a pan FIRE! Now, I have coped with the constant pins and needles for ten months now, I have learnt not to itch and scratch and have grown to accept that I flinch when the wind blows across my head, that my face physically hurts when a tear runs down it and that the pins and needles are accentuated when loved ones kiss me on the cheek. But come Monday, I was done. I slept for about three hours Sunday evening because of the pain. So I went to my GP. I can’t go into detail because it will make me cry. But long story short, she said there was nothing she could do. Nothing. That is why she has referred me to a neurologist. This is the same GP who back in February said I didn’t need to see a neurologist and that unless my face started to go numb, it was nothing to be concerned about….see face below….

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So, I cried. I kept myself busy because if I was busy I wasn’t thinking about the pain and the itching but being busy is tiring and being tired is one thing but not sleeping and being tired is another. Fatigue on top of fatigue is not good. Being busy hurts and the pay back from being busy hurts even more. But, I smiled and kept going, had my reflexology Tuesday morning but you know what, it was too much. So, although I really didn’t want to because I know how much strain the system is under, I had no other choice but to take myself to A&E. And you know what? The doctor I saw looked at me and said, “you are out of my skill set. I’m sorry but I have no idea what to do to help you. There’s nothing I can do.” That right there is the sound of my heart breaking. Eventually he said that he could prescribe me sleeping tablets to try to get me through to Thursday when we’d managed to book a private neurologist appointment….my NHS one was April next year – yeah, thanks GP! But, they haven’t worked so…great. I’m trying the ice pack on the head which he suggested but it hurts so much. I haven’t had anything on my head in months so applying a freezing cold pack isn’t the greatest. However I’m persevering because it might start to work…might. It made me wonder, if I walked into the surgery or A&E with my head literally on fire and ants crawling all over my face with pins attached to their feet – would they have sent me away so casually? I think not. Hidden illnesses are brushed away so easily, it’s quite scary.

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And then we get to Thursday. Mum and I hit traffic on the way to the private neurologist appointment we made which led to her using a phrase I have never heard pass her lips but did break the nervous air that was surrounding us… “shit the bed!” The neurologist was very nice, South African. Mum was obviously nervous because he asked if we minded him just popping to get a glass of water when we went in and mum replied (in a very poor South African accent) “sure, no worries mate.” I mean come on mum, taking the p*ss out of the man who we have all our hopes pinned on?!  But we did giggle, mum said she has no idea why she said it, it just came out – and I suppose we should always have a story to tell right?! We giggled more when I had to strip off and don a very fetching gown – all pre tied in a little scrunch at the front – that’s what you pay for when you go private I presume?!

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Annnnnd guess what? There is nothing he could suggest for the time being. So that is my GP, a doctor in A&E and a neurologist that cannot suggest anything to help me right here, right now. I am trying so desperately to stay positive but it’s hard. I can’t stand what is going on in my head. I’ve got my little coping strategies to stop me every time I reach to itch my eyes or scrape my head with my fingernails. I’m writing lists left, right and centre, planning blogs, watching rubbish TV, planning future ventures all to keep my fingers busy and away from what they really want to be doing which is to rip the skin from my body. I try to lay and rest and hope that my over tired, crying from the inside out body will sleep and have some freedom for a few hours yet laying still and doing nothing means I can only focus on the pain and the burning and the itching so my body is reignited and sleep gets further from my reach. It. Is. Horrendous.

He did however say I needed to get an MRI and C Spine scan urgently and luckily I was able to get one book in (privately) the very next day. It was at 8.20am so you can imagine how getting up to London that early was for me! I think I was rather naive about the whole situation. I got into the scanning room and was told that the scan was going to be incredibly loud – never even considered that, so immediately I was on edge because of my noise sensitivity. Even through the ear plugs and ear protectors they gave me it felt like my ears were going to explode. The first 15 minute scan I had, a grated head-piece was placed over my head and as I was slid into the machine I suddenly realised that I was in fact quite claustrophobic – they do say you learn something new every day! The panic bell they gave me was almost squeezed several times – I went into full-blown panic mode. But then I talked to myself quite sternly: There are worse things in the world.  Imagine you’re on ‘I’m A Celebrity’ and you need to win those stars for camp! It’s fifteen minutes you wimp – man up. It’s only noise, big deal. And then, for some reason, Shania Twain, ‘That Don’t Impress Me Much’ entered my head and I hummed away to that for a while. Intermittently the noises and patterns on the machine sounds would change which would over ride my train of thought and plummet me into breathlessness and near on full blown tears.

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But then I was brought out of the machine, the grate removed and a new head-piece applied – equally as awful and then, back in I went. It was worse that time because I knew what was to come and I knew how long 15 minutes felt! But….back I went, making lists in my head, thinking of how I could make some money, picturing my favourite places in the world etc etc and then..out I came – I DID IT! But…no no no, they forgot to tell me there was one last scan to go…of my chest. So a wedge was applied followed by a heavy-ish plastic plate which seemed to push down on my chest so I was suffocating but back in I went. That was the longest 15 minutes of my life.

When I finally came out and sat up I felt so light-headed. I thought I was either going to faint or be sick. But Dad was there waiting and let me cry and sip water until I was ready to leave and off we headed to John Lewis for a smoothie and croissant!  He even let me have a little wander round their Christmas department! Dad’s are heroes right?!

I’m glad that’s all done now though and I only have to wait until Thursday for the follow-up appointment and results. I desperately hope that something shows up – nothing too bad, just something fixable. Because if nothing shows…what do we do then? (Let’s deal with that at the time eh?!) As always, humour came into play and a message I received from Carly on how she pictured my situation made me howl with laughter – she was picturing me from Silence of the Lambs and wondered if I was more like picture 1 or 2…I’d say a combination actually! Carly Dean – legend!

 

That afternoon I went back to my doctor’s surgery and saw someone else – not my GP – and begged, once more for some help. He has given me some Tramadol to try to stop the pain from the burning but because its neurological pain it may not work but I will try anything. Apart from that, he also said there was nothing. Take the pain killers and the sleeping tablet and see what the neurologist says when I get the results back. Joys. And a little silver lining is my dermatology appointment for May 2017 has been moved to January 2017 – it shows how desperate I have been when these words left my mouth: “I can live with being bald for another six months as long as something else can be sorted.” I miss my hair every day and detest how it destroys my confidence a little more every week but I can live with it…I can’t live with the rest of it.

I also seem to have had more experiences with idiots over the past few weeks too. On one occasion, for the first time ever I responded but the other two I didn’t and regretted it a little.

Scenario 1: In Boots waiting for my prescription so I buy a few toiletries. A lady next to me is asking the cashier to find the price of something. It’s £38 so the woman says don’t worry and walks off. I am the only customer left so of course, my cashier strikes up a convo with her mate because, you know, that service for you these days.  The conversation went as follows:

“What cost firty ate quid then?”

“Some stuff that’s meant to make your eyelashes grow when you lose ‘em.”

“God, if I lost my eyelashes I wouldn’t bovva. It’s only ‘air ain’t it?”

“Yeah, god so not worth it.”

I couldn’t help myself. Not at any point had either of them looked at me as I was being served or gauged the situation stood in front of them, so I drew their attention to it.

“Excuse me, but unless you have been in a position where you’ve lost your hair, not from choice but from illness, I don’t think you have the right to say what you’d be bothered about losing or how much you’d be willing to pay to make yourself feel better.”

My heart was thumping, I was on the edge of tears but felt so angry. They looked so shocked, one stayed silent and the other started to apologise but I cut her dead, I was on a roll.

“I don’t want your apology, I would just like to pay for my things and go and maybe from now on you could be more aware of your customers and what you say or don’t say in front of them.” Conversation..DONE and I turned away and beamed from ear to ear #hairlesshannah had the power that day.

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Scenario 2: In the Co-Op. A five-year old looks at me and states, rather loudly to her mum how she is “scared of that lady with no hair.” The mum glances at me, I am obviously looking at her to see what response she gives her child. She just says “SHHHHHH” really loudly. The child then repeats her statement again but points at me this time as well. The mum repeats her response but this time pulls the child around the corner so as not to offend her child’s eyes any further. I work with children, I get that they don’t always understand however, that child was rude, plain and simple. Her mum simply needed to explain quietly that some people are different blah blah blah but she handled it so badly. I got home and said to mum that in a totally uncharacteristic way what I really wanted to do was crouch down in front of that child and say, “you should be scared of me, see you in your dreams tonight little girl!” Obviously I would NEVER do that because I’m a teacher and I’m human but god, it would have taught her a lesson – if only it had still been Halloween and that would have given me the right…right?!

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Scenario 3: I got caught leaving Holland&Barrett by charity questionnaire men. Literally the first words from stupid man one: “That’s a brave hair style you’ve gone for there madam.” Firstly – madam?? I am 30, please! Next, “so why do you choose to have it that way?” And I failed here with the come back I prepared because, as always, I was flummoxed by his sheer front, so I just replied that I was ill (normally I’d say alopecia but that day I felt ill so that was the natural response). On comes the cancer assumption. “Well madam, I’ve just spoken to a woman who has survived ovarian cancer twice so I’m sure you are going to be just fine.” Wow. So I stay silent and am just about to say thanks but I need to go when his colleague, stupid man two, comes over and immediately says, “I’ve just grown out my hair from that style, hated it.” At which point first stupid man is giving him a look and explains that I have cancer and that I am going to survive it because I’m a fighter. Wow. I looked at them and just said, “I have to go.”

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So there you have it. My two weeks summed up in under 4000 words (sorry it’s been such a long one, but I feel like this blog has been like talking to a friend I haven’t seen in ages with lots to catch up on!  Well done to those of you who have read to the end!) But on a serious note, contrary to this somewhat down beat blog, I haven’t let myself get too down. I’ve had fleeting moments, well hours, sometimes days, where I have felt totally sorry for myself and thought, if this is my life now, it can bloody well do one. However, I am lucky. Even though I haven’t really been up to seeing many people or doing things other than make it to appointments, I have friends who text me, email me, send me balloons with my face on and gorgeous flowers and generally keep me sane from afar. They make me feel like I’m still part of the gang even though I not always physically present. And of course I have my family who, well, are as they have always been, the best.

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#hairlesshannah

 

Guest blog 2 – a mum’s perspective

The last eleven months have been so tough and I have always been conscious of how it has impacted my family. To go from having an ‘empty nest’ to having all four of us at home again, one stressed NQT, and one ill, unemployed child can’t be easy. However, not once have they complained, not once made me feel like a burden, not once have they allowed me to feel alone in this horrendous ordeal.

Parents have this unwritten rule that they have to be the strong ones and I can only imagine what it must be like to see one of your own children fall ill, lose their hair and identity and become isolated from all they know and love. I feel terribly lucky that although we have a relatively small immediate family, we are blessed with such a large extended one.  Therefore, I know that mum, dad and maybe Jack (!) have people to talk to about what’s happened and offload their worries and upset and be comforted when it’s needed.

I asked mum, dad and Jack if they’d like to write a post from a families perspective of how alopecia has impacted their lives and I could see the trepidation in their eyes. However, mum has done it (no pressure boys!) and although it made me cry, it was a relief to actually read what I probably already knew about how she has felt about everything. So, here it is, guest post #2 from my best friend in the world.

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“Typical of our daughter, she didn’t tell us how poorly she was because she didn’t want to spoil our holiday in Madeira: that was last October. When she came home we could see how distressed she was by her hair loss and really believed that a few weeks’ rest and TLC would restore her to full health and she would be able to return to Dubai at the very latest by January.

How wrong could we have been? During the weeks that followed, more clumps of hair fell out: her eyebrows and her eyelashes followed soon after. With some trepidation we visited a recommended salon in Notting Hill and bought the first hairpiece. Standing there watching Hannah have it put on and styled seemed such an alien thing to do but we believed it would help to restore some of her confidence: wrong again. I had to come to understand that for Hannah, not having her own hair helped to rob her of her own identity and she just felt ‘all wrong.’ I hated the situation then and I hate it even more now, eleven months on.

As laudable as it was for Hannah to have done the research and measure the longest parts of her remaining hair so that it could be donated to the Little Princess Trust that makes hair pieces for children who suffer from cancer, I cannot begin to tell you the size of the boulder that lodged in my throat when Richard, as requested by Hannah, shaved the remainder of her beautiful hair off. It seemed such an abominable and sacrilegious act: necessary for all of the right reasons but just plain wrong.

During the weeks and months that followed, what an irony that the constant pins and needles in her face and scalp even robbed her of the privilege of even wearing the hair piece. Seeing her struggle downstairs at times as a consequence of the muscular pain she also has to endure, is almost too much to bear at times. Normal family times sitting and watching the television have also had to be adapted as noise and light intolerance mean we watch in semi-darkness and often have to have the sub-titles on – if I’m honest we were doing that more often anyway on account of our own hearing problems so that hasn’t bee too much of an issue!

It has never ceased to amaze us that for the most part, Hannah has kept so positive and focused on all of the good things in life: forever thinking of other people and their needs, ever aware and concerned about others and their problems.

She was the one who organised our joint birthday party in July – the guest list; the play-list; the decorations – not to mention the help she gave in actually baking the cakes – no mean task I can tell you when your hands are swollen with muscle pain. She was the one who contacted so many of my past colleagues and pupils in order to collate the treasured memory book which she presented me with when I retired and of course, more recently she co-ordinated the biggest surprise of all, the arrival of my much loved brother Chris who travelled from Toronto to celebrate my birthday in Swansea – get my gist? Forever putting others first: what a star.

Thank goodness for the amazing support we have had in the form of friends and family and most notably the ones who give up their own time to give Hannah reflexology and reiki – words can never express our gratitude to them. When I go to my aqua class, I don’t talk about Hannah’s condition unless I’m asked as when I get into the water, I switch off for an hour or so and let everything drift away. But I do know who I can turn to if I need to and that is priceless knowledge. Unlike me, I haven’t given in to venting my own full emotions yet – I know that I have to keep strong and that’s what us mums do isn’t it?

We have had our laughs along the way, as many of you will know from reading Hannah’s insightful and informative blogs. But there is one niggle I have and I’m going to tell you what it is. It really doesn’t help when occasionally people say ‘it could be worse.’ We know that. We do have hope and we do believe Hannah will get better. We also know that there are many more people in this world who have the cruellest of situations to be dealing with and some of them haven’t even got the close family and friends that we do but – well – just saying!

Imminently, Hannah will see a specialist at King’s – we are hopeful that he will be able to point us in the right direction in terms of a diagnosis and recovery: it is all so unfair. At thirty years’ old she should be out there continuing her amazing career: I often think of all the children who are missing out because they haven’t got ‘Miss Green’ and all of her loving care and skills in their daily lives. She should be going out with her friends and not worrying about being too tired to do so. I hate what this condition is doing to her: hate is such an emotive term but this is how I feel. And I make no apology for it.”

Cath Green

Thanks for reading…share the post and keep the #awareness going.

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#hairlesshannah