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

 

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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

 

Bedside manner

It’s unusual for me to write an unplanned blog but today my fingers just needed to let loose on the keyboard to get out of my system the hate, hurt, anger and upset that’s  setting in. Even though I posted yesterday, I hope you don’t mind this unscheduled rant! It’s all too easy on social media to portray that life is peachy but sometimes we need to be honest because we can even trick ourselves into really believing the “I’m fine” business. Although that’s the path I’m happier to tread for the majority of the time, sometimes I find myself in a space that is so catastrophically not fine, that I can only be true to myself.

This blog is aimed at anyone in a job that holds any kind of human interaction whether that be face to face, via email or over the phone. It’s a blog to remind people that whoever you are interacting with, they are human. They have feelings. They may have their own problems that are hidden to you. I’m not particularly religious but at this moment in time, all I keep thinking is – treat others as you’d wish to be treated.

Earlier in the week I finally experienced my first decent phone-call with someone at the DWP. She didn’t talk to me as if I was a piece of dirt on her shoe, she didn’t judge me, she didn’t tut at me or make me hang up the phone and crumble into tears. At the end of the call I asked for her name and thanked her for allowing me to ask the questions I needed to without being made to feel belittled. Unfortunately, although she was pleased to be thanked, she said that it’s all too often she hears that from people and assured me that the position both she and her colleagues hold is not one of seniority, they are there to help and reassure people in order to ensure they get the help and benefits they need and are entitled to. How sad it’s taken four months for me to finally be treated this way.

And this leads me on to other experiences I faced this week. A letter arrived last weekend from the dermatology department, I’d had to reschedule an appointment in early January as it clashed with a neurology appointment but they had obviously overlooked that. Therefore this letter outlined the results of my skin biopsy and recent full blood tests. Luckily – well not really for me – most came back clear, but what if this hadn’t been the case? I would have found out via letter? And then I came to the last paragraph; a short, swift sentence saying they agreed with the diagnosis by my GP, that my ‘hair loss’ was linked to that and therefore they had referred me to a psychologist. I’m sorry, but had you forgotten that I am a human here? This is my life, my hair, my situation? And yet you are bluntly wiping your hands of me because, why? My case is complex and might take extra time and money? Why am I not worth that? But anyway, after another cry and feelings of deep sorrow and frustration, I dusted myself off, plastered on my “I’m fine” face and focussed on the fact I could discuss it on Thursday at my next appointment.

Fast forward to Thursday. It took a lot for me to get up to Kings for 9.30am yet ten o’clock rolls round and still we haven’t been called in so I approach the desk to enquire about how long the waiting time will be. It’s then that I am told the specialist I am due to see is on annual leave and the stand in Dr is not yet here and they can’t get hold of him. I’m sorry but, why were we not a) informed she was on leave prior to today or b) told when we arrived that this was the case? It doesn’t take a lot at the moment to make me cry because although I manage to keep it in most of the time, I feel like I’m constantly on the edge. So there I am walking back to my parents in a full waiting room, crying. All because my doctor isn’t there – stupid but it tipped me over the edge. Does no one actually care about me? I had a text the day before my appointment reminding me that a missed appointment costs the NHS £160 but hey, if a patient is stood up, never mind, come back another time right? No harm done!

To be fair, the receptionists were amazing and it really wasn’t their fault. After they did some calling around we were told the stand in Dr had been on nights and had apparently cancelled his day appointments but the message hadn’t got through. The next available appointment would be March. But at that point, eagle-eyed mum saw the senior dermatologist come in and asked the receptionist if she could see if he would see us. Long and short is, fair enough, he did. But I wish in many ways he hadn’t.

He is the lead specialist in the dermatology department so you would hope that his bedside manner was outstanding eh? I understand and give some leeway to the fact he wasn’t expecting to see me but that doesn’t excuse the next ten minutes in my eyes. He didn’t have any notes so was obviously working from memory from their meeting after the case conference but he proceeded to tell me that actually their diagnosis was that my hair loss was more than likely untreatable and incurable. Bang, just like that. I cried and he just commented, “no tissues – sorry, NHS.” No worries that I’ve just told a 30-year-old girl that her hair may never grow back, no biggie, you can cope with that.

After I gathered myself I managed to question him, I was angry and in all honestly did not trust what he was saying. In the letter I received, statements had been made about other things which he then did explain to some extent but also tried to wiggle out of. He also stated that dermatology don’t really know much about hair loss and alopecia, he shrugged his shoulders a lot and leant so far back on his wheely chair, at one point I cruelly wished he’d keep going so it toppled over. He was abrupt, insensitive and uncaring, I was so stunned and shocked and felt harmed by someone I didn’t really know. He did explain why the psychologist had been suggested, if I deal with any stress internally then my body may start to heal from the inside which in turn will help the outside – or something like that, I must admit I had started to zone out a little by this stage. I asked him why I had follicles that weren’t growing – he responded with, “pffff, we don’t really know.” Mum pushed him to say that his referral meant that there was still some hope to which he said yes, but in all honesty, by this point I didn’t believe much that was coming out of his mouth.

After that appointment I reacted in a way I hadn’t before. I didn’t want to talk, I didn’t want to be around anyone, I didn’t want to ‘be’ really. In that instance I felt I had no fight left, nothing, zilch, I felt done. I wanted to run away, not have to face any of it anymore, I felt like I had reached crisis point and all because of the way that a specialist of the NHS had spoken to and treated me.

He is going to refer me to a specific hair loss dermatologist at Guy’s which I will go to and I will attend the first psychologist appointment but after a restless night and thoughtful morning I have come to a conclusion. I do not need to be cured in terms of my hair. My lack of hair is not offensive contrary to some socially inept people, it doesn’t make me any less worthy of love or affection. Like I’ve said before, I miss my hair every single day and I hate the person that stares back at me just as much as the day I shaved my head. But the conclusion I’m coming to is that maybe that’s because I haven’t allowed myself to accept it because I’ve constantly been looking for a cure. I’ve seen my hair loss as something disgusting and something wrong with me. But actually, I don’t need to be cured. I don’t have hair. I’m HairlessHannah, baldblogger. This is me now and hair doesn’t define me, I don’t need a cure. It’s not disgusting, okay it’s not something we see often but it’s not harmful to me or to others. That thought is actually quite freeing, I’ve never considered it that way before.

The rest of what I’m going through DOES need a cure. I cannot live the rest of my life in pain, with constant fatigue, noise and light sensitivity,  in isolation, not driving, socialising, working, earning. I cannot live with pins and needles from the neck up for the rest of my life. All of that needs a cure. Not management, a cure. And if a cure for that is found then MAYBE my hair will grow but MAYBE it won’t. If the rest of it is cured, I will be able to wear hats and wigs if I so choose, I can wear make-up and jewellery. I can make myself feel more feminine again but my hair doesn’t need curing.

So, I will see this other guy, I will try out the psychologist incase it will help with my illness but apart from that, hair wise I’m done. I’m done with trying different treatments, herbal remedies, seeing different “specialists” because I simply don’t need their lack of bedside manner. I am taking back the control again. I don’t need their opinions. The only opinion needed in terms of my hair, is my own. So from now on, I am bald, I have alopecia and I am proud. My hair may grow back one day but it also may not and I need to start  accepting that. And as I cry whilst I type this, I know that this is the first step towards starting to love myself again which, as my dear friend told me during our reiki session this week, I need to be able to do that again because it’s actually more important than we realise. Hate in any form isn’t healthy so self hate can’t be doing me or my recovery any good.

As a teacher, no, as a HUMAN,  I always strive to treat every child, every parent, every person I come into contact with, with the utmost respect, care and kindness. I imagine how I would feel if I was receiving the news being delivered to me. I go out of my way to help people and to make sure they know how much I am investing in them. I know the NHS is under great strain at the moment but if the bedside manner isn’t there, that’s when patients start to lose faith. That’s when patients walk away from any potential help that could be available. That’s when the system fails us.

So regardless of your job, just remember that your job as a human is to treat people how you would want to be treated. Everyone is fighting something on a daily basis so be kind, be mindful and think before you speak.

Have a lovely weekend.

#hairlesshannah

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Out with the old, in with the new.

2017 is almost upon us – I find it so difficult to comprehend that this year is almost done. The other day we sat around the table and did our annual, “what have your highlights been this year?” game. To be blunt, I couldn’t think of many. There have been many headlines about how 2016 has been the pits in terms of celebrity deaths, Brexit and Trump and my year fits quite neatly into that box of crap.

2016-deaths

Obviously I enjoyed our joint birthday bash and there have been the other days out that have lifted my spirits but all in all the year has been littered with appointments, frustrations, tears and sadness….oh and lots of sleep!

I do understand the whole ‘new year new start’ business yet when the clock strikes midnight on Saturday, things won’t magically change. As I did last year, I still have hope that in another year’s time things will be ever so much brighter but I now also have an inkling of fear that that won’t be the case. I’m still no closer really to a diagnosis, medication is still being figured out and if anything, I am in a worse state than I was a year ago. Therefore I approach New Year’s Eve with trepidation. Whereas last year I found Christmas much harder, this year I find myself getting emotional even thinking about the countdown to 2017. I don’t have any plans and 2016 feels like a total waste of my life. I know people will say, it’s not, you’ve done so much in other ways, but to me, this year has been rubbish.

I usually make resolutions like most people do…give up certain things, lose weight, take up a new hobby etc but this year I’m not making them. I’m just going to see what comes along and embrace moments with the aim of getting and feeling better about my life and myself. I guess this is because I fear that making any resolutions about my true hopes could end in more disappointment and to be honest, I couldn’t really deal with that. I think I’ve reached a level of stale mate. I’m now an accomplished actress of disguise but I’m finding it harder and harder to “be strong” “be positive” “have hope.” Living through 16 months of this has, in all honesty, been a living hell and because most of what I’m experiencing is invisible, it makes it even harder to explain and cope with.

Watching my friends and family go through their own hardships this year and not being able to help in the way healthy Hannah would have, has been hard to deal with. It’s been a learning curve to think up new ways of helping. I think this year has seen a lot of us having to really grow up and face grown up issues but thankfully we have grown together and it’s made us stronger. Life can be so cruel and unfair but unfortunately that is life and we have to keep going because what’s the other option? It’s the relationships we make along the way that help us put one foot in front of the other and that should never be taken for granted. Any type of relationship needs to be worked at, they are two-way interactions and sometimes cracks turn into great big crevasses that can’t be repaired but that is also a lesson worth learning.

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I’m aware that this post seems very doom and gloom and don’t get me wrong, I will be thrilled to see the back of 2016 and start a fresh. Maybe a new year will make me feel stronger again and I do hope that’s the case. I have lots of things to look forward to; watching my friends move into new homes, watching their children grow up, seeing my little brother move out and start making his own home with Yaz and seeing what my parents will get up to now they’re both retired! I live vicariously through all of these things. I don’t want to be tip toed around incase I get hurt or jealous. I want to hear what everyone else is doing, in the same way that I want to hear if they aren’t having a great time of things. Just because I have a long-term illness doesn’t mean that what anyone else is going through is any less important. I can still listen, give cuddles and be a shoulder. Like I said – relationships are a two-way thing.

 

I truly hope that 2017 is much perkier for all of us and that there are more moments of sunshine that we don’t have to make for ourselves. Here’s to light at the end of tunnels, to giving each other strength when we can’t muster our own, to bringing smiles to each others faces and to providing love, kindness and compassion as and when it’s needed.

Happy New Year everyone…see you on the flip side!

#hairlesshannah

 

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10 things to say & not to say to someone with a hidden illness/alopecia

Over the past ten months I have encountered many helpful and unhelpful comments from people.  On the whole, I am fully aware that they either don’t know what to say, they want to help but don’t know how but have my best intentions at heart. However, it never fails to shock me at how many people lack empathy or the ability to engage their mind before they open their mouth!

So, here are my handy hints and tips for what to say and not to say to someone with a hidden illness:

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Things NOT to say.

  1. I wish I had time to sleep as much as you do.

No you don’t. This isn’t a cheeky little Sunday lay in that we all crave after a long week at work or a fun night out clubbing. This isn’t a choice, it’s a necessity in order to cope with even a low amount of exertion. Believe me, I miss the days I was worn out from work or fun – you don’t want to experience this level of fatigue so don’t wish it on yourself!

2. I wish I could have ten months off work to just chill out and do nothing.

Really? Remember, if you’re not working you’re not earning. You lose your independence because you need to rely on others to help you out financially and that worry of not having any money or owing money is simply horrendous. Also, if you don’t work, you lose your purpose in life, you don’t have any responsibility and that sucks – big time.

3. It must be nice to not have any commitments.

It’s only human to look forward to a few days of no commitments and have some ‘you’ time but when that lingers for month after month, it really isn’t fun. To have to cancel plans and let people down is soul-destroying and isolating.  Don’t take for granted being able to plan things, see people and live life to the full.

   4. You don’t look like you’re sick.

If I didn’t have Alopecia, on the whole, I would look ‘fine.’ That is even more reason to listen to what someone tells you because it will deepen your understanding or take note of what isn’t being said because sometimes that will speak volumes. If I am quiet, I’m not in a mood – well, most of the time! – I am probably just quietly trying to manage my pain and resist the urge to scratch my face and head! The majority of my illness is hidden and I have become quite a good actress…just take time to understand that looks can be deceiving.

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 5. Try and push yourself through it, help yourself.

I am helping myself every single day. I pace myself, cancel plans, wear ear plugs all to help myself. It may not fit into your life or day but that’s why you have to be empathetic and understand, even though I know it must be frustrating at times.

6. I have a friend who tried **** and it cured them, you should try it too….

Believe me when I say I have and continue to try anything and everything but ten months in, I really don’t need to hear that your uncle’s best friends daughter rubbed vaseline into her joints for three weeks and he was magically cured! Everyone is different and although these weird and whacky treatments are fab, I don’t really want to hear it. I’m honestly not being ungrateful here, sometimes people have spent a long time researching their suggestions for me and these ones I always follow-up and look into, it’s just the odd ones that get me.

7. Just be patient, you will get there in the end.

I know. You don’t need to tell me.

8. You should say yes more and get out, it will help.

How I would love to do this. When I can, I will but when I can’t I don’t. It’s not because I don’t want to, it’s because I know I don’t have the spoons.

9. You’re too young to be this ill.

Age doesn’t factor into illness. As many people will know, if you’re ill, you’re ill. There’s no rhyme or reason to it, it just happens, so don’t comment on age.

10. You look so much better than I expected you to look.

Thanks…..I think. Does this mean I actually look awful but less awful than you’d imagined?! I know it’s a nice thing in reality but, you know what, I really don’t feel great and remember, it’s all hidden so just because I don’t look as pale and horrendous, this doesn’t match what I’m still dealing with.

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Things you SHOULD say:

Simple really, I believe you. I’m here for you.

Basically, It’s just nice to know your friends and family trust and believe what you are saying to them even though that can’t physically see it. It’s nice to know they’ve looked into your illness so have a deeper understanding of what you’re coping with without having to bombard me with questions. It’s nice to be involved in conversations that don’t revolve around illness, I like to hear gossip, news, problems and laugh – anything to take my mind of things is always lovely.

Thankfully, this is a quality that all the people in my life hold. If anything, being this ill has made me see who my true friends are and I can tell you now, I am one lucky girl.

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Things NOT to say to someone with alopecia:

  1. Being bald really suits you!

This is something you say to a friend when they’ve been to the hairdresser and had a change in style or colour. I haven’t been to the hairdresser and asked for a buzz cut. It’s not a choice.I don’t want to be bald, I don’t want it to suit me.

2. Thank goodness you’ve got a lovely shaped head.

Yes, it is a bonus that I have a nice shaped head but what could I do if I didn’t?! Would it make me repulsive? Like suggested by a newspaper recently – would it put people off their breakfast? No. Under your hair, you all have a bald head it’s just that you can see mine and I really don’t want any more attention drawn to it than necessary.

3. It must be so much fun to be able to experiment with wigs and scarves.

This is so well-meaning by anyone who says it, it’s a positive view on what they know is a tough situation. But for me, at the moment, no. It’s partly down to the pins and needles I have constantly, I can’t bear anything being on my head at the moment. Maybe, hopefully one day, I will feel happier wearing wigs but for me it just reminded me of what I’d lost. Worrying about it slipping, blowing away and having to remove it at the end of the day continued the trauma for me. If I’m just bald day in, day out, I don’t have to remove anything, I don’t have a reminder of what I don’t have anymore. I admire the wonderful women I follow on Instagram and on the Alopecia UK site because they seem to have fun trying and styling different wigs and I hope that one day that can be me. We shall see. As for scarves, if you know me at all, you’ll know how awful I was at styling my own hair let alone tying knots and twisting material and making it stay! Maybe practice makes perfect but again, not for me right now.

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4. Being bald must make getting ready so much quicker – you’re lucky!

Funnily enough I miss washing, drying, straightening, playing with my hair. Yes, I can get ready much quicker without all these processes but it’s not my choice and if you took time to think about how it would make you feel, maybe you wouldn’t say it.

5. You must save so much money not having any hair.

Yes, I do but I miss going to have my hair done, trying new products out…I’d trade you any day!

6. I’m having such a bad hair day!

This one always makes me chuckle. I actually don’t mind people talking to me about this because it’s a normal conversation for girls to have. I guess I don’t have bad hair days anymore, I just have no hair days! Some days I cope with my Alopecia better than others and can laugh and joke about it but most days I can’t stand it.  However, that doesn’t mean I don’t like to hear the moans and groans about bad cuts and colours or how the wind and rain is annoying – unless I’m having a bad day (which isn’t your fault) I love these moments.

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7. It WILL grow back.

Unfortunately, as lovely and hopeful as this comment is, we just don’t know. Many people’s hair does return but many peoples doesn’t. There is no cure and there is no plotted journey for hair loss. So although it’s a positive comment, in a way, it gives false hope so maybe just don’t say it.

8. It’s only hair.

As with so many of the above, just spend a moment thinking about how you would feel if one day you had beautiful hair and a few weeks later it was all gone. It’s not just hair. It’s part of you, it forms part of your personality. It changes how you feel about yourself and affects your confidence more than you can imagine.

What you SHOULD say and do:

Laugh at hair loss jokes and give cuddles when it’s too tough to find the strength to be positive about it all. Be honest when a wig or scarf looks utterly ridiculous but also comment on how lovely and beautiful we look when we get it right!

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And remember, September is Alopecia Awareness month so get your Fun Hat Fridays sorted and get in touch if you want me to come and do a class talk etc. Thank you so much for all your continued support, I really am lucky to have the support system I have.

Fun Hat Fridays

#hairlesshannah

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