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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

 

Catching some zzzzz’s

Sleep.

When you think about that word, what does it mean to you? Is it a thing of beauty, does it conjure up images of an inviting bed made up with the softest, fluffiest pillows and prettiest of covers beckoning you to snuggle down and rest and recuperate? Or does it simply mean a thing that you need and have to do in order to function for the next day?

Do you need a certain amount of it in order to feel human and happy?  What is your minimum amount that will allow you to be human and not become a monster when anyone dares to talk to you?! Are you a late nighter or a 10pm-er? Do you enjoy a lazy lay in or are you an early riser? Is sleep a thing just for nights, do you revel in a cheeky little nap or have you trained yourself in the art of power naps? Do you need to set an alarm or is your body conditioned to your work schedule?

Does sleep bring you a release? A place to be you, to be quiet and thoughtful, to dream and escape? Is sleep and your bed a place you welcome when you return from a holiday or can you sleep anywhere?

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Sleep, for most, comes naturally. Our body clocks know when we need it and how long for. Our bodies are very clever like that, it knows when we need more or when we can possibly cope with less. That is, until our bodies’ works against us and that leads to some very tricky situations as I have been learning. Sleep has become much more of a nightmare for me since becoming ill. Having researched more it is very clear that many ME CFS sufferers have this same problem; the feeling of overwhelming fatigue is there all the time, the ease to nap during the day out of necessity unlike in the university days when a nap just helped you for the upcoming night. Yet when it comes to the evening and the night-time, sleep seems to evaporate. Our bodies pain sensors kick into overdrive and sleep gets further and further from our reach.

I have never had issues with sleep before, I’ve always needed between 7-8 hours and that has always suited me well. But now, insomnia/painsomnia is in my vocabulary and it sucks. No one can really explain why this happens but it clearly does. As with the rest of the research with ME CFS, there isn’t enough of it to explain all of the side effects and symptoms. I guess it’s almost like when people say you’re overtired or you’ve had too much sleep and your body gets confused. But with my body, I can’t sleep because the pain intensifies and I simply can’t get comfy…even with my pregnancy pillow! I have tried sleeping tablets which to be honest worked a little but not enough and in any case, I can’t stay on them as they are addictive. I have started using herbal remedies but they just don’t seem to match up to the discomfort and insomnia.  I do manage to get some sleep when my body literally crashes but it is always broken and it is never deep, restful or refreshing.

I’ve tried everything in the depths of the night to distract myself from the pain and discomfort.  I’ve tried laying there and persuading my body to rest and sleep. I’ve tried watching box sets and TV programmes, listening to music and audio books, colouring, blog writing, pacing around my room every half an hour to move my stupid aching limbs. Nothing works and that’s when the frustration kicks in, that’s when the mind starts to act against you too and the endless thoughts go round and round your brain tormenting you. It’s such a lonely, scary place to be. It’s a feeling of being trapped and not being able to escape, a feeling of the unknown. And this goes round on repeat until eventually the body can’t take it anymore and shuts down and sleep occurs. Then I’ll wake every hour or so until I make myself get up ready for another glorious day!! Our bodies and minds really are a marvellous thing but sometimes I just don’t understand them. They are meant to be wired up to help and protect us so why do they work against us at times?

Sleep is just another thing I’m having to approach differently these days and that is just how it is. It’s not nice but it’s not the end of the world –  it’s just another thing I just never appreciated enough at the time..but then who does?

Hope you all sleep well tonight, sweet dreams.

#hairlesshannah

I, Hannah Green

Last week I finally got round to watching, ‘I, Daniel Blake.’ From the opening second I could feel my heart beating faster and stress filtering through my body – the scene was one of a conversation between Daniel and the DWP (Department for Work and Pensions) asking the medical assessment questions. Questions which will lead to you being awarded points which then determine what benefits you are entitled to. It is scored out of 15 and the questions go something like this: “Can you lift your arm above your head? Can you walk unaided for 50 metres? Can you walk to the bottom of your garden unaided? Can you show me how you take your shoes and socks off? Can you empty your bowels frequently?

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Yes, these questions and answers override anything your doctors or specialists have advised or done and if you score less than the 15 points they tell you that you are fit for work and therefore need to apply for Job Seekers Allowance. I cannot tell you how similar Daniel’s story is to mine. I scored 0/15 on my assessment. Zero. Zilch.Nada. So as with Daniel, I had my ESA (Employment Support Allowance) taken away – which I’d never actually received in the first place may I add – and was told to make an appointment for Job Seekers.

The character of Daniel is similar to myself. He didn’t want to give up without a fight because he knew he was entitled to something and that is what we have worked and contributed for all our lives. In the end I cancelled my Job Seekers interview after yet another frustrating conversation with the DWP. I tried telling them that although I was wanting to take my case for mandatory consideration, I was not willing to waste both my own and the people at Job Seekers when I wasn’t actually able to work! This they couldn’t understand. They wanted me to turn up and get advise on how to write a CV before applying – at this point I informed her I was a teacher and knew how to write a CV, again I was told, “In order to dispute your claim Miss Green, this is what we will need to see you doing.” Well I’m sorry, but I am not doing that, I am not willing to put myself through a humiliating session, being made to feel degraded and useless. So the route I am taking is to let the DWP know that my parents will be appealing on my behalf because I no longer have the strength to deal with their red tape and bs.

I won’t give away the whole storyline of the film, but you should watch it. It challenges stereotypes at every turn and gives an insight into how people could quite easily end up homeless on the streets. If I didn’t have my family or the back up of selling my flat, what would I do then? The reality is that once my money was gone, I would be homeless. I am sure the people at the DWP are nice people who are just doing as they are told but to me they are inhumane robots who don’t care, don’t see the real people, don’t consider what medical professionals are saying about your health. They talk to you like you are below them, like a piece of dog poo they stepped in on the street, they let you hang up the phone and cry because you feel so worthless. I wonder what they would do or how they would feel in the same situation?

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There is something fundamentally wrong with our society and our benefits system. I would give anything to be able to work, if I could I’d be down applying for Job Seekers ASAP but I can’t right now and regardless of what my GP, neurologist and ME specialists say, the computer still says no because I can lift my arms high enough to put a hat on my head! I know that the majority of people on benefits do genuinely need them, but I also know there are people out there who abuse the system and get away with it and that angers me beyond belief. All I want is to receive the benefits I’m entitled to so that I can help my parents pay the bills that I’m adding to by being back at home. I want to have some money coming in so I don’t feel totally dependent. I want to be acknowledged as someone who is worth the help and support, not someone who is a scrounger.

I, Daniel Blake is a very powerful film which highlights current issues in a true light, and I can say that because much of what he experiences mirrors what I have to. I have a very dear friend who is also having to fight for her sons rights, if you heard the details of their story your blood would boil on their behalf. The film should be watched by as many people as possible so that these issues are discussed – awareness can only bring positive outcomes. So watch, talk about it and take action if you feel you can. Our next step will be writing to our local MP, the injustice needs to be addressed.

I, Hannah Green feel abused by the system, but I’m afraid that as with Daniel in the film, they have chosen the wrong person and family. We will continue to fight and complain and make my voice heard..I just need to stock up on some spoons before I try again!

Just something for you to ponder on this Tuesday!

See you Friday.

#hairlesshannah

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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

The art of saying no.

How often do you use the word ‘no?’ And I don’t mean in the usual way, like answering a child in class who asks – “can I gowa toilet?” or by replying to your mum when she asks, “can you empty the dishwasher?” I mean, saying no when that is really the answer you want to give but feel you can’t for fear of upsetting someone, letting them down or in case you encounter the guilt that may follow after using it.

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I have come to the conclusion that there are three types of people in the world. The ones who say and do what they want with no thought at all, ones who internalise the reality of what they want and think but on the surface and on the whole, give answers that will please and keep the peace and finally, those who are just genuinely, sickeningly nice people who do anything and everything to please others! And I suppose, there’s a possibility that some people are a mix of all, or some of the aforementioned.

All too often, if we are truly honest with ourselves, we will occasionally find ourselves in situations where we are being asked to do things or spend time with people we don’t know too well and have no inclination to either. However, when we are put in that tricky situation when you are asked by them or a mutual friend to do something, we, well, definitely myself, find ourselves automatically spurting out the word – “yes.” And all the time internally thinking, “why on earth did I just agree to that?” and spending the days before worrying about the upcoming event.

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Over the past year I’ve been placed in a position where the word ‘no’ or variations of it have had to be used more honestly than ever before in my life. I’ve always been a mix of the three ‘types’ of people I just mentioned, depending on how I’m feeling on a certain day, week or month! On the whole, I am a people pleaser. I like to be kind and nice and really, really hate confrontation. But, due to life experiences thrust onto my path in recent years, I’ve had to grow some balls and realise that actually, we only get one life and we should live it, as much a possible, how we want to, with people we want to.

Now, of course, there are people and situations in life that you want to avoid but that doesn’t mean you have to be nasty to them. On the contrary, there’s no need to be nasty to people, a lesson in life is that we can’t and won’t like everyone that enters our lives. Some people will always just be colleagues, some acquaintances and some become treasured friends. But no matter what category people end up in, unless something truly catastrophic has happened, you should always be civil, because let’s face it, if we said or did things to some people that we’d like to, we might get into trouble!

I’ve had to learn to say ‘no’ more often to protect myself and help myself heal. I learnt quite quickly that by saying ‘yes’ to people when really my mind and body were saying ‘no’ (I’m sure there are a few of you singing lyrics in your head now to R.Kelly!) I was disadvantaging myself and my recovery. I have been extremely lucky that the majority of my support system understand that when I cancel things, it must mean that I really and truly can’t be there and function like a normal human being. There have, of course, been the odd few times when “friends” have not understood this and that is when the self doubt comes into play. My mind has then questioned whether I have upset my friends, let them down, maybe I have even pushed them away. But, again, as I have learnt the hard way, those people really weren’t your friends in the first place. That’s such a hard concept to grasp when all you’ve done is be ill and they just can’t deal with that.

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On the outside to many people, they will see me as a strong character but I’ve had that stronger exterior bumped and bruised over the past year. I’ve questioned many things but that has also meant I’ve had time to evaluate many aspects of my life. Working as a teacher means that you form very close bonds with the people you work with and as I have found, many of these people become very close friends. But moving to Dubai and working in such a ridiculously large school meant that you can’t be as inclusive as you may once have been! I learnt that actually, it’s okay to have colleagues and it’s okay that some of these colleagues become friends and some don’t. It’s a matter of who you want to spend your social time with, talk to about things of meaning and who you can be totally yourself around. It was hard in Dubai because there is that element of becoming part of an expat family and supporting each other. But after that first year when you cling to anyone and everyone for dear life, you start to filter out and spend more time with the people you have more in common with and I learnt that that’s okay. As I said before, that doesn’t mean I wasn’t ‘friendly’ to others, it’s just that those relationships were of a different nature.

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In smaller environments it’s much harder to do this but I think because I had so many new life experiences in Dubai, I’ve come back feeling more confident in thinking, I don’t have to include everyone because it’s alright to not be friends with everyone. Sometimes, we have to be selfish. I’ve pondered this word because it throws such a negative light on whatever your’e talking about. I had several conversations with a few people about what the word is I’m looking for to describe this ‘selfishness.’ Is it really ‘selfish’ to spend time with the people you care about most and do things you want to do? Of course there has to be give and take, but if they are people in your circle then that’s not a problem. If you know what word I’m looking for, please let me know!

Learning to say ‘no’ is so hard when it doesn’t come naturally. I have this overwhelming need in me to not let people down, for them to not be disappointed in me. It has been educational to me to realise that actually, whether in your personal and professional life, if people know you and care about you, they would rather you were open and honest with them and then together, you can find a way forward. In my case I also wear a mask a lot at the moment, I want to appear ‘fine’ to people and I’m learning that that doesn’t always help me. By not being honest and saying, “well actually no, today’s not a good day” people think that’s the truth and wonder, why isn’t she coming to things, why isn’t she working, why, why, why? So gradually, I’m being more honest without becoming the moaning Minnie no one wants to talk to.

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I honestly think this is a much more female problem. In my experience, men are much more care free about who and what they spend their time on. As women, we fret and worry about hurting people or people then talking about us behind our backs…and believe me, as women, we all know that person who is vicious behind our backs – we aren’t that stupid! So therefore, unless absolutely necessary i.e organised events, meetings where your paths may cross, it’s important to turn things on it’s head and consider – do they include me? Do they benefit my life like I benefit theirs? Do I know of times when they’ve made me feel rubbish about myself? And if that’s the case, they are an acquaintance, someone to be civil to but not to spend your treasured personal time and space with. It’s a hard thing to grasp at first but believe me, it gets easier. That person will never call you out on it and if they do, remember, you never, ever have to justify what you do in your own time, period.

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Social media plays a part in this so much more than it did even a few years ago. Being un friended is the ultimate low…but is it? I’m not talking here about the friend you made at the pub ten years ago that you haven’t seen since, I’m talking about the people you see often and are actual face to face friends! If they un friend you without having the guts to call you or see you to talk about things that may be getting under their skin, then that’s their loss not yours. If your “friendship” with someone ends by an un-friending or blocking on FaceBook, they have a lot of growing up to do and it’s more of a reflection on them than you.

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Even as a thirty year old woman, I felt I needed to write about this topic because it is something that affects me and I know affects many of my friends. How sad is that? Surely by this age we should have the self confidence to do what makes us and our lives the happiest? Life isn’t about social media updates, likes and shares. It’s about time, love and memories. I don’t see some of my closest friends for weeks and sometimes even months but that doesn’t stop us being in touch and I know when I see them it will be like nothings changed. I know that with any of them, if I say ‘no’ or ‘I can’t’ they won’t be angry, they’ll be sad I can’t be there (maybe!) but it won’t alter our friendship in the slightest…and that’s what is worth more than anything else in the world.  It’s something to ponder on anyway…

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Spend your time wisely because you can’t get it back.

#hairlesshannah

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

x

 

Alopecia Awareness month is coming!

The past few weeks since the party have been some of the toughest. The flare up fall out was much worse than I could have anticipated – a low moment was having to text for help from mum and dad to help me out of bed – fun times! However, the party was so special and so very worth it. Having almost everyone that we love in one room, eating cake, dancing and looking so happy was just wonderful. I will treasure that night always.

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Due to the flare, or possibly because I am simply fed up of this whole scenario, I have been emotionally unstable to say the least! Mum only had to ask me what was wrong yesterday and out flowed the tears – I ended up ugly cry laughing because I just said, “I’m fine, don’t touch me!” which mum thought was hilarious, but I’m sure we all have certain people that only have to look at us, touch our hand or say something nice that will set us off right?! I’ve also turned to doing some more research in the past few days to try and refocus myself into being proactive and positive rather than continuing down this path I’m on which isn’t very nice at all.

**Disclosure warning here – all of the below is my understanding of certain diseases and therefore may not be 100% accurate.**

My specialist appointment has come through for November, yes November, so I thought that doing some more of my own digging might throw up some more options in the meantime. From looking at various M.E. websites and reading what other sufferers have gone through, I came across Lyme disease. Now, I know it’s a long shot but it resonated with me enough to request the blood test for it. Many people diagnosed with M.E are misdiagnosed and have actually got Lyme disease. Doctors know little about M.E and seemingly even less about Lyme disease. The difference being you can test for Lyme and if caught early enough, it can be treated with a course of antibiotics.

Lyme disease comes from ticks that carry Borrelia and pass it to you when they bite. The symptoms don’t always occur immediately, some times as much as six months after the original bite. I was in Thailand six months before I started to get ill and when visiting an elephant orphanage we were bitten quite a lot, some of mine resembling that of the bite shown for Lyme disease. The symptoms for Lyme are almost identical to M.E, especially if not treated quickly enough. What I found interesting was that it covers the symptom of facial numbness or pins and needles which is a symptom that is unbearable for me. My doctor as always has been supportive and has sent me for the blood tests even though there is a chance they will reject it as it is one of the more expensive tests on the NHS. I just feel that its something we need to rule out – or in – before moving forward. Funnily enough, the antibiotic used to treat Lyme disease is one I am on currently to treat the bacterial infection on my face. But as my GP mentioned, if it is Lyme, it’s almost certainly too far along for these antibiotics to treat it. We shall see!

I have also noticed that I have become sensitive to certain foods, especially cheese, so I have cut those out until I can get some allergy testing done. I didm however find some more interesting explanations for the possible reason behind this. As I have found, auto immune diseases start to fight certain parts of our bodies thinking they are foreign objects – for me it is my hair. But also, so much is linked to our guts. So, as you can see from the image below, if certain food particles pass through the gut lining, it can lead to food sensitivities, your body starts to think that particular food is a foreign object and tries to get rid of it.

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Now, something else I want to try and drum up support with is Alopecia Awareness month which is in September. If you’ve read my blogs since the start you will know how much alopecia has affected me, not just physically but mentally and emotionally and I have a strong urge to spread awareness of the disease so here’s where you can help!

Alopecia UK are promoting a fab idea that for each Friday in September is Fun Hat Friday! Now this can be done in offices or any other non school setting, the idea being that you choose a Friday in September where everyone wears a fun, silly hat, takes a selfie and posts it on social media. Then use the text number to donate £3 to Alopecia UK.  If you post, use the hash tags #alopeciaawarenessmonth #funhatfridays and to link me to your posts using #hairlesshannah

I have attached the poster that you can display and use in your places of work; or you might want to host a little Friday night Fun Hat Friday games night, family meal, aqua class or pic-nic where you join in and donate.

However, if you work at a school, your children are at school or you have teacher friends, I’d love to try and do something on a bigger scale. Obviously the children won’t be able to text and donate so the idea would be for the school to choose a Friday in September (or a Thursday in Dubai, you don’t get away with it that easily!!) where the staff and pupils bring in a donation and wear a fun hat for the day. The donations can then be totted up and a cheque sent to me so I can then see what we’ve raised and I’ll send it all in to Alopecia UK. Although I’m not working at the moment, I would be happy to come and do class talks for circle times or if I feel brave enough, do some assemblies to explain what alopecia is and what Fun Hat Friday is for. Another option is that I would be happy to make a PowerPoint that you could use in class explaining what alopecia is. All you’d have to do it let me know.

I know there are so many worth while charities around and sometimes the smaller charities, like Alopecia UK, get left out so I would be so appreciative if anyone wants to set up an event or get a school involved. If you do join in, please let me know and send me your pictures. And don’t fear, closer to September I will remind you all!

Fun Hat Fridays

 

Throughout the month of September I will be using my Instagram account to share photos of how alopecia has affected me and will also post your photos of Fun Hat Fridays so come and follow me: @greenhannah86

Hairless Hannah

xx