A very spoonie-fied blog

I’m sorry I’ve been absent for a while – well, almost a month now. There is no real excuse, especially when I know how writing helps me, but I just haven’t had the urge to write, I’ve had a slump and I thought that rather than force out blog posts that I didn’t really believe in, I’d stop. Pause. Take stock and tell myself it’s okay to take a break and come back as and when it felt right.

I am disappointed in myself that the month of May has been the time for this period of nothingness because it’s an important month for ME/CFS. May is ME awareness month as well as awareness for many other hidden illnesses. I’ve watched and followed eagerly how my little spoonie online community have raised awareness and done so much for the cause. Next year I will do more but for this year, all I can offer is this blog post.

I’ll start with a little fun fact; May 12th was Florence Nightingales birthday and it is suggested that she was one of the earliest sufferers of ME.  From 1857 she was often disabled by ill-health and spent much of her time bed bound; she is now considered a kind of patron saint for this under studied illness and this is why May 12th is used as a day for awareness. How about that eh?!

I then thought I would recap the main facts about ME, so I have used the main websites that I find useful and informative to provide you with the following:

The National Institute for Health and Care Excellence (NICE) provides three levels of severity for ME: mild, moderate and severe. This is how they explain them:

  • People with mild CFS/M.E. are mobile, can care for themselves and can do light domestic tasks with difficulty. Most are still working or in education, but to do this they have probably stopped all leisure and social pursuits. They often take days off, or use the weekend to cope with the rest of the week.
  • People with moderate CFS/M.E. have reduced mobility and are restricted in all activities of daily living, although they may have peaks and troughs in their level of symptoms and ability to do activities. They have usually stopped work, school or college and need rest periods, often sleeping in the afternoon for one or two hours. Their sleep at night is generally poor quality and disturbed.
  • People with severe CFS/M.E. are unable to do any activity for themselves, or can carry out minimal daily tasks only (such as face washing, cleaning teeth). They have severe cognitive difficulties and depend on a wheelchair for mobility. They are often unable to leave the house, or have a severe and prolonged after-effect if they do so. They may also spend most of their time in bed, and are often extremely sensitive to light and noise.

I come under moderate. I won’t go on about my personal experience because I feel I’ve done that enough in previous blogs. However, progress has been made in that the 4-6 month wait for CBT has been destroyed and I have already had my first two sessions. Now, I know there is much debate about the usefulness and effectiveness of CBT for ME patients and I must admit, initially I was wary. But you know what? This is the only thing, the only offer of help I’ve had from the NHS so I am grasping it with both hands. I’ve gone into it with an open mind but also with open eyes. Luckily I made an immediate connection with the therapist and I trust her – both a bonus when you consider all the bad luck I’ve had over the past 20 months! We have set targets together to try to help me with my sleep – not working yet and as she predicted have made things worse before they hopefully get better. I like her because she is honest. There’s no BS, it might work for me, it might not but with everything crossed it could improve on what I live with daily and that’s enough for me thank you very much!

  • ME is a chronic illness which means it is long-lasting with no cure or guaranteed treatment.
  • ME is a physical disorder – having ME is NOT a state of mind and there is real scientific proof for this.

Life with ME has made me reevaluate everything about myself and my life, I guess a life changing illness will do that to you. It’s a terribly lonely illness. Yes I am surrounded daily by my wonderful family and I have constant contact with friends but I don’t have that connection with people anymore. I don’t have work banter, I don’t have social banter or random chats with people you may see when you’re simply out and about. I spend A LOT of time alone, sleeping, thinking…and that is lonely. It’s isolating and it makes daily life tough to face.

Raising awareness of illnesses like ME is so very important. Even doctors don’t know very much about them and patients – including me – often have to educate their GPs and specialists about possible medications, treatments and symptoms. It’s a frustrating situation that can be made easier by more people being educated and therefore having an understanding of what sufferers are living with on a daily basis.

Thank you for reading, thank you for baring with me and thank you for your continued support.

Have a lovely weekend.

#hairlesshannah

 

Guest Post: Paul Foley, brain stem glioma

Paul and his lovely family have been our neighbours for the last 17 years; they are not only neighbours, but our friends. Paul’s story is a tough one to read but one of great importance, not only because he is spreading awareness about his brain stem glioma, but because he has a question to ask.

He needs a new wheelchair to improve his quality of life – pop over to YouTube and search TEK RMD wheelchair and you will see how incredible it is. However, this chair costs £18,000. A cost that no family will be able to afford on their own. Then comes the next stages of his treatment, at a cost of between £50-100,000. So Paul and his family are reaching out to ask for help, for our help to raise funds to make these unthinkable improvements to his life.

Please read his story below and donate if you can, it doesn’t have to be much, every penny counts and no matter what you can afford, Paul will be so very grateful. Share the heck out of this blog post, share Paul’s story and share the link – if any family deserve your help today, if any family deserve your good deed for the day, then this is them. Thank you in advance for your support, love and kindness – I will now pass you over to Paul.

#hairlesshannah

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Before I tell you my story, I want to share with you why I’m writing this guest post.

I’ve now had 5 courses of chemo and there have been some slight changes however, I’ve decided I need to be more proactive and having seen an amazing robotic wheelchair which allows users to stand and move around safely, I’ve set up a funding page with the aim being to get one of these to improve my life. Then there is the next course of treatment – a course of immunotherapy which will complement the chemo. The robotic wheelchair is approx. £18k and the immunotherapy as much as £6k per month. I have set the target at £30k knowing it would be more and the response so far has been amazing. We raised £20k in a week and are now just under £24k with about £15k expected from planned events. I suspect though we will need double that total for the treatment I need.

I head up to Guys tomorrow for chemo course no 5 and hopefully get some answers on cost and amount of immunotherapy: they will not provide funding for brain tumours on NHS – for other cancers yes, but not brain cancer. This is despite the fact that brain cancer is the biggest cancer killer of under 40s but receives only 1% of funding losing out to the more publicised (but controllable) cancers of breast, prostate, testicular etc.

So, if you would like to help out by organising a fund-raiser or simply donate, please head to this link and know that both myself and my family will be forever grateful. The page can be found on the gofundme.com website, search Paul Foley and you will get all the information you need.

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Now for a potted history of my story, by Paul Foley.

For two years leading up to a diagnosis in September 2012, I had a series of GP appointments where getting heard on the specific symptoms I was experiencing was a real struggle. Basically I had a dull, deep-seated headache that did subside gradually over time but I knew was different to any stress or migraine type headache I’d had. One GP helpfully told me to try Yoga as it appeared to be Spondylitis – I laughed and said, “no mate this isn’t muscular-skeletal, this is deep inside like a gland pain” – my exact words – Yoga, seriously?!

I then had 2 or 3 ‘episodes’ that Summer, brought on by heat (sauna) and alcohol, which all resulted in a prominent limp where I had to drag my right leg along – it just wouldn’t work. The next day I’d be wiped out but the limp was gone so I assumed it must have been a blip. Between June and August it didn’t seem to flare up other than having a weird feeling like someone grabbing the back of my neck in meetings at work. Then on the treadmill in August I noticed that the quicker I ran, the right leg just couldn’t cope so I’d stop and do stretches either side but the right leg still wouldn’t behave. So back I went to the GP and back to A+E for a scan…but still nothing.

On holiday in SW France in August 2016, I drove a camper van that week, there and back from the UK and that’s when I noticed that driving was getting tricky. The key turning point was one day in August when I woke very early and my whole spine felt wobbly and weak, I could barely walk. I wanted to walk my youngest to her primary school as I ‘wasn’t sure how much longer I’d be able to walk’ – I remember knowing I was in trouble. I have always known I was in trouble – the medical staff have always been on catch up unfortunately. I broke down on the park bench in the Rec next to her school as I just had a feeling this was very bad.
I headed straight over to the GP and eventually saw the right one – he listened, he knew more about neuro issues, no talk of Yoga – he agreed this was neurological not mechanical – I’d had ankle, knee, muscular injuries over a 20 year semi-professional football career and I knew this was different. He sent me with an urgent letter to take to A+E.  I went to the PRUH at Farnborough and there is where they found it, finally ,on the MRI scan. A lesion / blood / swelling at the bottom of my brain, a really bad spot…won’t be able to get to it so highly likely zap it with Radiotherapy and / or chemo. Bang. Shock. Relief they found something but please not an inoperable tumour. Pulled curtain back……silence, shock, fear, tears, some anger, resilience, creeping determination, some grit and a firm upper lip – I’m never giving up. 

So treatment – all arranged swiftly – all well explained by my very knowledgeable and straight talking consultant – I liked her, she was like a brain specialist version of Mary Portas. The options were limited to two – intensive daily doses of radiotherapy to the brain for 6 weeks and Chemotherapy if that didn’t work.

So every day for six weeks we went to Guy’s, getting zapped to the brain at their advanced Radiotherapy department using a machine that only hits the hotspot of the tumour reducing peripheral damage…supposedly. It didn’t though as I suffered hearing and taste issues to name but two. To ensure the tumour was getting hit they fit you with a bespoke heat moulded mesh mask which is bolted to the bed so you can’t move. You may have seen on the TV cancer ads running at moment. It’s not nice, it’s claustrophobic, you can’t breathe, swallow or cough at all. The only good thing is the zapping is quick, say 5 mins for all of the effort required to get there.

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One slog through rush hour to get home springs to mind as this commuting zombie who could clearly see I was shuffling along with my ticket in my mouth, whacked into me on purpose as I was delaying him all of 5 seconds. I dropped my ticket and hollered after him on a packed platform using my full range of expletives. I wanted to knock some sense into his thick skull but he scarpered up the stairs – he heard me ok – and like a Dalek I was undone by the stairs. As the weeks wore on and the dreaded steroids took a hold, I filled with fluid at every available void and my face got fuller, that bespoke mask fits a face that no longer exists. It’s tighter, more claustrophobic but don’t mention it,  just a few more sessions to get through.

As a bit of advice from someone who has blown up on steroids, if you want to pass comment – don’t. It’s just irritating. Pre-illness I was 6 foot 2, 14 stone and with low body fat and higher than most general fitness. I’ve never been bloated or swollen or overweight. So when people say ‘cor you’ve put on some timber’ or ‘you’ve blown up’ it is just going to grate. Yeah I’m ill, I’m on horrible drugs that just fill you with fluid, I can’t move – funny my body shape has changed! The things people say to you when you’re ill never ceases to amaze me. So many ‘friends’ I just can’t be bothered to talk to anymore – illness polarises your attitude to friends.  Some are brilliant and surprise you and some are just so self-absorbed in their own world they just don’t get it. It is a cliché but illness just strips away the things that don’t matter and you really notice it in others and you get a great radar for selfishness. I couldn’t care less about the weight gain (4 stone currently) it’s a by-product of the illness but the daft comments can do one! I get uncomfortable because I can’t move so well as I’m bloated but it’s just how it is, no more knocking out ab crunches on the bench – I’ve come to terms with that – seemingly others haven’t.

So the treatment finishes and towards the end I start to get a spasm/twitch during zapping – that can’t be good. I can’t taste anything and my hearing goes all ‘electronic’. I asked the pleasant Radiographer about it who replied, “oh didn’t they tell you that?” – unfortunately an all too familiar comment over the next 4 years. She showed me a coloured image of my head which actually shows in ‘glow’ the peripheral damage as the radiation goes through healthy brain tissue. This is the first time I’ve seen this. There is not enough explanation or understanding around radiotherapy especially to a highly vulnerable and sophisticated organ like the brain. You are putting radiotherapy into your brain through healthy parts to get to a tumour – just stop and think about that for a minute! There is a lot of publicity around the Gamma knife and Proton Beam therapy machines with the Proton option being the one the family took their young child abroad and paid for treatment. Young brains that are still developing are more prone to damage from ‘standard’ radiotherapy – they don’t care so much about the older messed up brains. Well, the NHS paid millions for two Proton machines but couldn’t afford to run them – I believe there are some up and running now. The principle makes sense if you imagine a clock face Proton delivers a spread of safer strength beams at 12, 1pm, 2pm and so on which all focus in a concentrated point at the tumour with hardly any peripheral damage. It would have been preferable to have this treatment.

paul-5

That continued for three years of ‘stability’ as they call it which basically means you will get symptom changes, numbness, loss of feeling or some movement, reduced endurance etc but if your MRI scans show the same then you are ‘stable’. In some ways it was stable, I was making it into work most days, I was limping around but just about able to do what I had to do. I was getting lifts to work for a while and then back driving when I was able. 

Then around September 2015 things started to deteriorate, I was having to stop more frequently and ‘re-set’ my walk. It got worse and worse and I could barely cross a road in one go. Getting upstairs was very difficult. This changed quickly over the next three weeks to the point I couldn’t stand for long and started to stoop making tea etc unable to stand up straight the back muscles just giving up. I told the hospital every time a new symptom appeared and they advised that the scans were showing ‘no change Mr Foley’. By Christmas I was really struggling to even get around the house and some nights couldn’t make it up the stairs. I couldn’t get my right sock on, eating was one-handed now, shaving/using toothbrush etc, I couldn’t get in and out of shower anymore so it was sitting by the basin and washing. One day at home I stood up to do my belt up and just as I went to fasten it I fell like a tree without getting my hands out onto the breakfast table smashing my nose and rolling off onto the floor. No one was in and I couldn’t get up, so rolled my head onto the timber floor to save the gushing blood from ruining the rug. Hannah’s dad had to rescue me as no one else could lift me off the floor.

A few weeks later another fall, this one as I went to transfer from wheelchair (which I was in now) to toilet but as I stood my leg locked and I fell against the tiles holding my body at 45 degrees with my all of weight-bearing onto my head. I called out, managed to slide down onto the closed WC putting my chest onto the toilet and then sliding onto the floor where I was unceremoniously dragged into the hall to wait for the ambulance to get me into my chair as it was 2am – we couldn’t ask Richard this time! We waited two hours on the cold floor, they got me back in the chair, ran tests and it was 6am before we knew it.

In February 2016 the decision was reached to put me on a 6 month course of chemo ‘empirically’ which basically means ‘without any clinical reason’ so try it and see. I was happy with this though as I was desperate to try something. Then around September  2016 the decision was made to switch chemo to a more powerful chemo, PCV. Around the same time Matt called home with some interesting news, the medics at Oxford had found an extremely rare and specific antibody only found with a condition called Devics or NMO. It could be managed much like MS and may be an improved prognosis but more tests required. So they ran tests alongside continuing the current treatment plan of chemo until we know for sure. A month later the experts told us it is categorically not Devics, despite the presence of a Devics specific antibody. A huge disappointment as an improvement possibility disappeared and the communication + management had been very poor.

I’ve now had 5 courses of the chemo and there have been some changes however,  I’ve now decided to be more proactive and having seen an amazing robotic wheelchair which allows users to stand and move around safely, I decided to set up a funding page for this and a course of immunotherapy to complement the chemo. The robotic wheelchair was approx. £18k and the immunotherapy as much as £6k per month. I set the target at £30k knowing it would be more and the response was amazing. We raised £20k in a week. We are just under £24k with about £15k expected from planned events. I suspect though we may need double that total.

I head up to Guys tomorrow for chemo course no 5 (of new chemo) and hopefully some answers on cost and amount of immunotherapy: they will not provide funding for brain tumours on NHS – for other cancers yes, but not brain cancer. This is despite the fact that brain cancer is the biggest cancer killer of under 40s but receives only 1% of funding losing out to the more publicised (but controllable) cancers of breast, prostate, testicular etc.

Hopefully I get answers, hit my fund target and get continued improvement on my mobility.

Thank you for reading my story, for sharing it and for possibly being able to help me raise the money I need. 

Paul Foley 

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

 

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Out with the old, in with the new.

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

2016-deaths

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

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

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

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

relationship

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

 

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

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

#hairlesshannah

 

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Do you think you’re depressed?

This is a question I have been asked numerous times over the past few weeks by every medical professional I have seen. I think they ask it because if I say yes, they could prescribe me something and be smug in the fact that they solved part of the mystery that is Hannah Green.

They seem slightly confused when I tell them that no, I wouldn’t describe myself as depressed. I ask them to try to picture themselves in my situation and ask whether they think they would be jumping for joy. Yes the last few weeks have been tougher than ever but that is because my symptoms have worsened. Therefore, yes, I have felt sad, I have been extremely emotional and teary, I have been quiet and felt very isolated. But I am not depressed. I continue to try to keep positive as and when I can and smile and move on once I’ve kicked myself back into shape. They just find this hard to understand.

I have now seen an immunologist, a dermatologist and a neurologist (privately otherwise the wait was until April next year!) and still no one can help me. They can’t even help me dumb down the pain or the burning on my head. I have been prescribed sleeping tablets and Tramadol for the pain but these combined with some of the other tablets I’m on mean that I am a zombie most of the time. I haven’t driven for two weeks again and I can’t walk far because my legs feel like jelly and I’m unstable on my feet.

The dermatologist didn’t really know what to do or say so has asked me to go next week for a case conference where several specialists are in the room and can assess me – that part is great but she also wanted me to let my hair grow for two weeks in the lead up. I tried to explain through my tears that I never shave the huge patch where I lost my hair, just the parts that kept growing because otherwise it was so unsightly. After a week of regrowth and feeling my confidence shrivelling with every day, I rang her and explained once more how distressing it was. Thankfully she said that if I could take lots of photos of it, I could bring them along and shave my hair. So that has definitely been something good that’s happened. Well, it is but that was until I had to shave my re growth off. Although I wanted it gone, for a short time it has been nice to stroke the soft hair that was growing. That must sound so odd to you but I haven’t had hair on my head for a year so to know it still grows was a relief, it was a joy to use a little bit of shampoo for a week, to have to use a towel to dry off my hair after a shower. So shaving it was like a grieving process once more. Not as bad as before because I was regaining control again and you’ll be impressed, I used shaving foam and a razor and wet shaved it off without a cut in sight – now that is a talent I never knew I had!

My body – mainly from the neck up is fighting off any drug, ointment or cream I use to help me. I have the most painful, itchy, irritating patches of raw skin around my eyes, cheeks and eye lids. It hurts to smile, blink – it’s just an added symptom that is unbearable. I have red, painful spot like lumps and bumps on my scalp that come and go but are so painful too. To combat all of this I am finding myself trying to do things to occupy my hands rather than use them to itch and scratch my face and make it even more painful. It’s a counter productive experience because doing anything on top of all the drugs in my system means I get super tired and have pay back from anything I do but I feel like I don’t have an option because otherwise I would get depressed. So, I’ve tried new baking recipes, made a personalised advent calendar for the family, watch TV or films and sorting Christmas presents and cards on a budget! I also have spent so much time sleeping again which is the only true release I get. My word I never thought my thirties would be so fun!

So, I’m hibernating again. I don’t feel like going out because I am very self-conscious but also because I don’t physically feel like I have the get up and go to do much, to deal with the noise and bright lights and people’s stares. And with today being December 1st it makes me sad to think that a year ago I was telling myself, it’s okay, this Christmas is going to be pretty rubbish but by next year you’ll be better and with some hair regrowth but that simply isn’t the case.

So no, I am not depressed, maybe I’ve dipped in and out of it in split seconds of weakness but I think most people would in this situation. No one can be positive all the time and that’s alright.

Happy Advent everyone,

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#hairlesshannah

That Don’t Impress Me Much

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

“What cost firty ate quid then?”

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

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

“Yeah, god so not worth it.”

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

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

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

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

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

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

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

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#hairlesshannah

 

365

Three hundred and sixty-five days. 365. A year.

I’ve tried as much as possible not to measure events in my life by time, like mum says, it helps no one. But, I’ve been back in the UK for a year today and that is a milestone. It’s a long time. I’ve watched one of my best friend’s little boy experience his first year of life and witnessed all the things he’s learnt to do. Life passes us by in a flash really and this year has made me slow down and take stock of what’s really important. In the grand scheme of things a year isn’t the end of the world I know; I’m only 30 and have many years ahead of me, yet, this is also the point that I struggle with. I know I haven’t “lost” a year of my life, believe me I’ve lived through every single day of it, but I feel like I’ve lost a year in terms of what I should be doing at my age.

As always, I have tried to combat every negative thing I can think of that’s happened in the past year with something that has been positive and actually, the more I’ve thought about it the happier it made me. Being forced to slow down and have time to think and assess life has been a good opportunity. So here are my year’s pros and cons!

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Firstly, I haven’t worked full-time for a year. I miss my job, I still resent not being able to properly finish my time in Dubai and I hate the fact that for the first time ever, I’ve doubted whether teaching is something I want to eventually return to. I’m so lucky to be able to be doing two hours a week at my old school, reading 1:1 with children and don’t get me wrong, I love that and it’s started to build my confidence. Actually, I can still make a difference and I do adore working with children. But seeing the stress that my friends and colleagues are under panics me. It saddens me to see people I love so swamped by paperwork, percentages, facts and figures rather than being able to totally focus on the important part – the children. I am just unsure whether this has been a wake up call to lead me down a different path because teaching isn’t for me?

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That thought terrifies me but then on the other side of the coin is the fact that because I haven’t been at work, I’ve discovered my love for writing. I will be forever thankful to Claire for encouraging me to start blogging. It’s enabled me to be totally open and honest in a way I otherwise wouldn’t have been with not only myself but with the people in the my life. Since starting the blog last December it’s given me some purpose, it’s something manageable I’ve been able to do – a little every day or as and when I’ve wanted/needed to. I’ve never written it thinking about who may read it, in a selfish way it’s been for me and me alone. I’ve written a daily diary since 1998 which has always been my way of processing things and ensuring I don’t bottle things up and the blog has been an extension of that. It’s just been an amazing bonus that people have read it, enjoyed it and supported me along the way.

This year has given me the time and material to write a children’s book which I am in the process of trying to get published. But the exciting thing is the door that’s opened in the process. One publisher loved my story but couldn’t take on any new authors this year however, said they were looking for authors to write books for titles they had. This was all new to me – I suppose publishers see gaps in the market and come up with titles and then find authors to write for them! I had to pitch three ideas for the title which they then presented to the bosses against other authors who had also submitted ideas. And amazingly, one of my ideas was chosen! I have since written the book and been through the editing process and now it’s being illustrated and will be published at some point next year! Okay it isn’t the book I hoped would be published BUT it will still be my writing, in a children’s book which has always been a dream and I can’t wait! It’s a step in the right direction so fingers crossed the next step is getting my manuscript published!

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Alongside not working comes the not earning money scenario and this has been one that’s plagued me more than most other things. I’ve always been fiercely independent. Money for me was a way of making sure I could live but also treat and support my family and friends. Not having a penny to your name is something I never considered for my life. It’s meant I’ve encountered feelings I’ve never had before; I know it’s not my fault, but I feel ashamed and embarrassed to have to ask for help from my parents. I hate it with every fibre of my being. They know and I know that I will pay them back every penny but for me, that doesn’t help, I hate it. But nthis situation has meant I’ve found pleasures in other ways that don’t involve spending copious amounts of money. My poor friends have received homemade gifts for presents, I’ve picked up hobbies like my writing that don’t cost a thing and baking which doesn’t cost an arm and a leg. It’s the little things that count and it’s made me appreciate them even more now.

When I was working and earning, there was always more that I wanted to aim for. Another country I wanted to travel to or something I wanted to save for and treat my self to. Always something I would see that I’d want to buy for someone. But not having money has made me realise that is isn’t the money that brings the happiness. It’s the people who you want to experience those holidays with, the people you want to spend time with – that is what is worth more than money. I will always want to travel and treat myself and others but I will be more mindful about it. Money enables us to do things and with that brings happiness but money isn’t the catalyst for happiness, we are.

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Last week I decided to finally give in and try to see what benefits I may be entitled to. Well, what an experience that was! Again, I can laugh now but that phone conversation was hellish. The guy was so rude I couldn’t believe it! Some of the questions had multiple choice answers but were so misleading, on a few I got confused and stumbled a bit,to which he exclaimed, “you’ve obviously never applied for benefits before!” Well actually, no I haven’t! I explained how I’d always had a job and that I didn’t want to abuse the system but after a year and going through all my savings and eating into my mum and dads, I should look into it! He also felt it necessary after asking about my marital status to say, “hmmm, 30, single and unemployed,” followed by a little chuckle!!!! SERIOUSLY?! I almost said, “yup, bald as well!” And when I declared the costs of my property and the rent I was getting from subletting, he couldn’t help but tell me how amazed he was that someone would pay that “for a flat.” I promptly told him I was a professional and that the people who rent are professionals who work hard to afford a decent place to live, but what I wanted to say is – it’s none of your bloody business you rude bastard!  What a phone call!

This year has also highlighted things I took for granted. Driving for example; I am now driving a little further than I have done previously but even then the furthest I’ve driven is Swanley. There are days when my ankle hurts too much to drive or I know that I’m too tired to properly concentrate. Not being able to get in the car and drive to see friends or do things is so frustrating. Then there’s things like going shopping or going to London or eating out or going to the cinema. I now religiously carry my ear plugs everywhere. I’ve got a new-found respect for autistic children who explain how horrendous it is when there’s too much noise, it’s indescribable. It is like my ears pick up on every single thing that is occurring in any given place and I then can’t focus on a conversation, it’s exhausting and it’s painful. I find myself wishing myself home to a quiet bedroom or place where I can control the noise. I look like Greta Garbo whenever I go out now because my light sensitivity is so bad I need sunglasses on!

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I just miss being spontaneous. Popping out, seeing friends, not worrying about how tired I feel and knowing that I need to pace myself. If I could be out doing things, either alone or with friends I would. It’s made me re-evaluate how much time I spent doing work and not spending time doing things with people I enjoy spending time with. I know that when you’re living “normal” life, it can be so hard to get that work life balance but as and when I get stronger and better, I will definitely get my priorities sorted and ensure that my life isn’t dominated by work. There is just so much more to life than that.

This year has made me see who my friends are and has made me start to say “no” and do things that enrich my life and theirs. I haven’t done a whole lot this year but the things that I have done and that I have spent my spoons on have been amazing. I cherish those days and moments so much more than things I’ve done in other years because they’ve all been with people who I now know I have an equal relationship with. They know I’d do anything for them and I know they’d do the same for me. It’s refreshing.

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There are some things that I can’t pitch a positive against like the whole hair situation. I’ve said it before and I’ll say it again, people who I see on social media with alopecia that embrace it and say it’s part of them and they are happy, I admire them. I feel like I have embraced the bald now but although it is part of me and I don’t feel as embarrassed anymore, I continue to detest it. Living with alopecia isn’t life threatening but it is life changing and rightly or wrongly I still have all my hopes pinned on the day that my hair will return. But as I write this paragraph I’ve thought, there is a positive – it has made me stronger. I’ve had to encounter social segregation and ignorance and verbal attacks that have shocked and upset me. But through my blog I have spread awareness for the condition but also developed an invisible armour around myself to field off any idiotic comments or stares.

I was wearing this armour the other week when I received a phone call from the estate agents outside Holland and Barretts. As I was on the phone a man walked past whilst staring in shock at my head – so much so I thought he was going to trip over the bin ahead of him! But I stared him out until he silently apologised and scurried away. Then to my utter dismay another man approached and did the same. So I stared back but this time, he stopped and approached me. My heart was thumping because I obviously expected the worst, but as he got closer he said, “I’m so sorry for staring, you’re just so beautiful!” Talk about a chink in my armour, it made me realise that not all stares will be for negative reasons and maybe I really can pull of the bald!

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When I saw mum and dad at the arrivals gate a year ago, I had never felt relief like it. I was safe. And I continue to feel that way a year on. My family is just beyond words. Everyone thinks their family is the best and that’s only right and I don’t dispute that but I just know that my family are my best friends and have been my rock. I already knew that but they have gone above and beyond this year and there really are not enough words to express my love or gratitude to them.

I am back in limbo a bit now whilst waiting for more specialist appointments but I do feel hope for the first time. The specialist at Kings was and continues to be amazing. She’s made me feel like they are doing all they possibly can to get to the bottom of whatever is going on and get me better. This has been the positive to oppose the negative feelings that are unfortunately creeping in about my GP. If you don’t know what’s wrong, just say. Do a referral, hold yours hands up. Just. Be. Honest. If my GP had done that months ago when we questioned if a specialist was the way to go, I would be much further along at this stage. But, I’m not and there’s no point in dwelling on it but it makes me sad and angry and definitely more prepared to fight for my cause than I was before.

So, there it is. My year. A truly crappy 365 that has uncovered so many wonderful things that I wasn’t aware of or didn’t appreciate as much as I should have. Making your own sunshine, as cheesy as it is, really works. A year ago I came home and cried and revealed my increasingly big bald patch but a year on I learnt how to use a power drill and used it to carve my pumpkin whilst being all wrapped up sitting at the patio table breathing in the fresh air. Now, it may not be how I’d have spent a half term before but you know what, it was bloody good fun!

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#hairlesshannah