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The reality behind the photo

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

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

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

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

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

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

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

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

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

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

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

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

See you Friday.

#hairlesshannah

 

13 Reasons Why – my review

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

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

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

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

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

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

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

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

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

Samaritans: 116 123

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

Rape crisis: 0800 802 9999

Victim support: 0808 168 9111

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

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

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

#hairlesshannah

Life would be boring if we were all the same

Grief isn’t really a word I’d associated with my life over the past 18 months until my one-off psychotherapy session. Grief tends to be associated with the loss of a loved one, describing any other form of loss as grief hadn’t really occurred to me before. Yet once I started to ponder this thought, I’ve realised that I have experienced an awful lot of grief on many differing levels and I haven’t dealt with any of them properly.

Since a young age I have most definitely been a person to put on a brave face in front of people because I never want to be a burden. I don’t want to impose on people and add to the stresses and strains they are inevitably dealing with in their own lives. Now don’t get me wrong, of course I confide in my friends and I do talk to my family…when it’s pulled out of me…but on the whole, I like to think I can deal with things, work them through, on my own. But at this golden age of thirty, as this never-ending illness keeps its nails firmly dug into my every being, I’m learning that I can’t always cope on my own. Not as well as I’d like to think I do anyway!

Grief is a process and a process dealt with differently by every human and that’s why it should never be faced with judgement. The way I may deal with things is probably totally different to how someone else would and the time frame I deal with it is also probably vastly different too. This is life, humans are meant to be different, what’s the saying – life would be boring if we were all the same! I am definitely someone who chastises myself too easily, I guilt trip myself far too quickly too and I am a sucker for comparing myself to others which in turn doesn’t help the latter two issues! Without realising it, I suddenly became aware over the past few weeks that on waking every single morning, my first thought of the day was always, without exception, one that took a dig at myself. How awful is that? To wake up every day, being in such a bad place that my first waking thought is one of hate towards myself. That’s why I know I’m not in a good place because although my own self esteem and self-confidence hasn’t always been the best, it’s never, ever been this bad. It makes me sad that I feel this way about myself, not just about my physical being but about my day-to-day life. I have always been such a go getter, a busy person with a real love for life and it makes me so sad that I’ve lost that, especially when there is so much good that surrounds me. Whereas before I could use those good things to keep my head above water, now, I know that these good things are there but they don’t help me as much to keep positive. That’s so much harder to deal with because it’s like they are at an arm’s length away but I can’t quite get to them.

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Although I’m in a waiting period before I start CBT, I thought I’d be proactive and have spent several sleepless, pain filled nights jotting down, thinking about and analysing all the things I’ve lost and may need to grieve for in the last 18 months. It seems I haven’t dealt with any of them – great start Hannah, great start! The list grew longer when I stopped looking at the bigger picture and started looking at the smaller picture that lived within it and that then became quite overwhelming. Seeing it in black and white made me really emotional.

I’m not going to bore you with my list but it ranges from the seemingly little things like not being able to spend time reading a book, to the bigger things like not being able to work, to the obvious one of losing my hair. All of these things cumulatively add up the loss of life as I knew it. The life I’d built up after jury service, being independent again, gone. Just like that. In all honesty I don’t have the answers and I don’t know how I’m supposed to let this go and I’m sure that’s a question I’ll ask when I start CBT. I just struggle with it all because there is no end point. There’s only so much positive thinking I can do. I feel like I can’t control the constant arguments in my head that flit between berating myself for not being positive to being kinder to myself and allowing myself to be okay that I’m not always being positive.

I didn’t know I was going to write this post until a few days ago when grief really did hit me in terms of the death of a loved one. Losing my Grandma was something we had been prepared for in many ways and had wished for her too because dementia is such a cruel illness. We’d lost her a long time ago and watching her the way she became was very hard, luckily she was unaware of how she was existing because she would have hated it. But I was so close to her, after Grandad passed away she was my only Grandparent left and we formed such a tight bond. I loved looking after her and spending time together. We would do puzzles, I’d join in with activities at her care home – glass painting has never been so entertaining! I enjoyed painting her nails and doing her make-up and when she was able to, I was lucky enough to be able to take her out to  enjoy a scone in John Lewis before tackling the disabled toilet with a wheelchair…we did laugh! In the later months it was nice to just sit and hold her hand, push her round the garden when the sun was out and massage in hand cream, talking to her about the past or just sitting with her as she slept. She was a truly special lady in my life and yes, I know she lived to 91 and that’s amazing and I know that she’s at peace and that it was best for her. But she was my Grandma and I loved her and I can’t explain how much I am going to miss her.

So yes, I guess you can say grief has come to a head and I don’t know what to do with it all. I haven’t cried very much which is SO unlike me but then I don’t feel like I need to, I just know that all of a sudden since this realisation, there’s this knot in the pit of my stomach and I can’t untie it. I think perhaps it’s because I know that if I start to untie it, there’s a lot to be unravelled and I don’t know if I have the strength or energy to deal with it all. It shall be done but I need the tools to approach it properly so hopefully my appointment will come through soon!

Having said all of the above, I have never lost sight if the fact that I am still so very lucky. And that has always brought me back to a quote from Winnie The Pooh; “How lucky I am to have something that makes saying goodbye so hard.”

Happy Tuesday.

#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

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Always the Bridesmaid

There’s a saying, “always the bridesmaid, never the bride.” There’s also a film named ’27 Dresses’ that is basically based around the quote. It’s a saying that is relatively true to my life, I have been bridesmaid three times now and don’t get me wrong, each time has been a total honour and I’ve loved being part of those special days, but as mentioned in my post earlier this week about being single, as I get older, that thought does creep in – maybe I was born for the bridesmaid role and not the actual bride!

Now this isn’t a poor me, need love and sympathy blog, far from it. I am one of the lucky people to have actually experienced love, and I mean proper true love and I am very grateful for that. I have so many happy memories and it makes me have the belief that one day I will find that again.

However, it is a fear of mine that I won’t find that person, my lobster, that one person I will grow old with because I want to have my own family unit that I can love and nurture. I have always wanted to get married and have children and give them the love and experiences that I’ve been lucky to have. But as with many things in my life, I know this is, in many ways, out of my control – especially at this point in my life. I’m not in a situation where I can ‘put myself out there’ because of real, physical reasons and I would also be nervous about getting myself out there because of reasons that have impacted my self-confidence and self-worth so much. So, I’ve had to learn to be, or try to be okay with my current single situation more than ever before.

Being single totally has its perks, I know that. It meant that I could up and move to Dubai without a second thought of how it may impact on a partners life, I could travel and do as I pleased on the whole and make decisions based on my wants and needs. It means I have my whole wardrobe and bedroom to myself for storage and to house my shoe obsession and I have the entire bed to myself which is always a benefit – no snoring or quilt hogging to contend with or cold feet!

But I would happily exchange this and make adjustments if it meant meeting the right person coming into my life. I do still believe there is someone out there for everyone, it’s just a case of that chance meeting at some point, I am a strong believer in three things:

  1. It happens when you least expect it
  2. What’s meant to be won’t pass you by
  3. Everything happens for a reason

Each experience we have in life be it a relationship, job, holiday, illness, loss…they all teach us something. I’ve struggled with number 3 recently because I can’t get my head around how so much awfulness can happen to so many lovely people and explain it away with – everything happens for a reason. Yes we learn things about ourselves and others through these tough times but do we really need that to happen to such an awful extent in order for this lesson to be taught?  That I struggle with.

But in terms of relationships I have never looked for any of the meaningful relationships I’ve had, apart from one online, they’ve just happened – one from a chance meeting in a shoe shop and one through friends of a friend. My longest relationship almost didn’t happen because I told him at my 18th party that I didn’t want to dance with him because I was having too much fun with my friends – priorities!!  And because things happen when you least expect them, I believe that things won’t pass you by because if they’re meant to be, they will seek you out. And then depending on how things work out, no matter the heartache or happiness, I do believe that what is meant to be, will be.

I personally think many people are afraid of being single or admitting how long they’ve been single. It’s like being single is something to be ashamed of, like you’ve been rejected from society and are some kind of freak. I know I have felt terribly embarrassed by the length of my single life but it shouldn’t be that way, there’s nothing wrong with me, I just haven’t found anyone who is right yet that’s all. I’m actually quite pleased I’ve had this single time as an adult because I’ve had time to work out who I am for real without influences from anyone else. I’m a strong-willed, fiercely independent woman – sometimes to my own detriment – but I do believe that without being single, I may not have discovered these characteristics in their entirety and I may not have travelled and had some of the experiences I’ve had without this single time. I’m now fully aware of what I want and don’t want from life and a partner, I know what I’m willing to compromise on and what I’m not and I am happy to stick with that. The right person will come along because I know that I am meant to be a wife and a mother and it will happen when it’s meant to be…am I justifying this too much?!

Until then, I just have to keep going through my own life’s challenges and uncovering new things about myself which will in turn continue to build me as a person. So if you’re single, don’t feel sad, there’s many of us in the same pool, so lets just enjoy it until it’s time to jump out and enjoy the next chapter of our story!

lobster

Phew – last daily blog for February, now I’ll be back to one or two blogs a week which I have to say it’s much more manageable for me! So have a lovely weekend and see you soon!

#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