Pins & Needles…

Something that I’ve written about a few times is the pain and pins and needles covering my face and scalp. It’s been the best way I could describe them but the phrase, pins and needles has never seemed to explain the severity of what I’ve been experiencing.

My first experience of them was a horrendous new symptom. The tingling began just before I started to lose my hair and gradually spread down my face and neck. A constant burning, tingling sensation was made worse by wind, make-up, earrings, hats or scarves. At times they were manageable and I was able to be outside and try and bear the sensation. But it was affecting many aspects of my life and along with hair loss, furthered my lack of confidence.

I saw countless doctors and even a private neurologist. I tried several different, nerve targeting drugs, I tried patches on my head, had scans and tests but ultimately no doctor could get to the bottom of them. They were invisible and was told to just hope they would go away. I was told it was paresthesia which essentially, is pins and needles.

The pain would get so bad at times; once I even took myself to A&E I was so desperate. I waited and when I was eventually seen, within five minutes I was out again, having been told that if a neurologist couldn’t diagnose, an A&E doctor wouldn’t be able to. Sorry, but go home, we can’t help you.

Then, I had my second bout of shingles and was on a course of anti-viral tablets. One morning I woke up with the most horrendous ringing in my ears, followed by what felt like my ear drums bursting, and, just like that, the pins and needles dissipated. Gone. Just like that. I made a doctor’s appointment to check my ears as I was convinced that the burst had caused some damage, but no, nothing, and again was told, be happy they’re gone, don’t question it.

I then had a blissful twelve months without them. Until early November 2019, I was at a very low ebb, a bad M.E flare up and I could feel them creeping back across my face. I didn’t tell anyone to begin with, it was too crushing to discuss and I hoped they would go. But over time, they got worse, much worse than before. Lockdown 2020 arrived but in all honesty, regardless of lockdown, I’d have still been locked down. They are so bad I can’t lay my face on a pillow, the sun or wind is so excruciating it brings me to tears. Showers are having to be quick and with as much of my face out of the water as possible because it feels like electric shocks under the water stream. Hugs from loved ones hurt. When friends come for socially distanced visits in the sunshine, I have to sit inside.

I honestly can’t explain in enough words the pain they cause.

Gradually, a combination of things led mum and dad to be worried enough to reach out to my GP once more in desperation. I signed the letter but honestly expected nothing. They couldn’t and didn’t help before. A top neurologist ran out of options. A&E couldn’t help. What would be different now?

Well, it seems a lot can be different. I had a phone consultation a week ago and my GP asked, had anyone ever mentioned Trigeminal Neuralgia to me? No. No, they hadn’t. Well my goodness, if you Google it like we did, it explains my symptoms and experience to a T.

Trigeminal neuralgia is a chronic pain condition that affects the trigeminal nerve, which carries sensation from your face to your brain. If you have trigeminal neuralgia, even mild stimulation of your face — such as from brushing your teeth or putting on makeup — may trigger a jolt of excruciating pain.”

Trigeminal neuralgia is usually caused by compression of the trigeminal nerve. This is the nerve inside the skull that transmits sensations of pain and touch from your face, teeth and mouth to your brain.

The compression of the trigeminal nerve is usually caused by a nearby blood vessel pressing on part of the nerve inside the skull.”

It is a very rare, chronic illness that affects only 10 in every 100,000 people in the UK. If you have A Typical, the type that affects the entirety of you face, it’s even rarer…I mean, it would be me wouldn’t it?! What was even more interesting was the fact that the symptoms can disappear, a form of remission, for several weeks, months or years but can then be triggered again and return with a vengeance…another tick to my experience.

Granted, there are no tests that can show this up, it is diagnosed by a patient who explains their symptoms; I still find it staggering that it’s taken five years for anyone to have made a link.

And here’s the good thing, although there isn’t a cure, there are treatments to try! I have started a low dose of anti convulsant medication..I’ll let the NHS explain it for me…

“An anticonvulsant medicine called carbamazepine which is often used to treat epilepsy, is the first treatment usually recommended to treat trigeminal neuralgia. Carbamazepine can relieve nerve pain by slowing down electrical impulses in the nerves and reducing their ability to transmit pain messages.”

Over time, I will be building this medication up but it has to be done slowly. The side effects I’m experiencing already aren’t much fun – unsteady on my feet, even more fatigued, feeling like I can sense my brain pulsing in my head…it’s very bizarre but as always, I will try ANYTHING. And the good news is, if these don’t help or continue to not agree with me, there are some other options – including surgery to open my skull and remove any blood vessels that are compressing the trigeminal nerve!! (Really don’t fancy this option so if you could keep your fingers crossed for the drugs, I’d appreciate it!)

I’m still learning about this condition. I can’t tell you the relief that I have a proper name for it: pins and needles always seemed so flimsy and never conveyed the pain that riddles me on a daily basis. But now, I don’t feel like I’ve been imagining or exaggerating the feeling. In my research, it’s described as one of the worst pains an adult can experience – so it feels like I am justified in having been locked down, not worn make up, turned down trips out, not enjoyed a single minute of the sunshine this year..it is real and it is recognised by medical professionals.

I’m publishing this blog today because apparently October 7th is Trigeminal Neuralgia Awareness Day, haha I am chuckling to myself because I really don’t want have another string to my bow in chronic illnesses to raise awareness for but, I know so many of you have followed my “journey” and might find it as interesting as we have.

So, this is just the very beginning of trying to treat them. I will keep you updated and let you know how it all goes…I mean, skull surgery would make for a great blog post wouldn’t it?!

Keep safe and well,

#hairyhannah

Lockdown

2020 is not how we planned it, is it? Not one person could have predicted how this year was going to go and, let’s be honest, I doubt many of us can predict how each week is going to pan out at the moment!

Lockdown 2020 taught many people many things. We were all forced to stop, take a rain check, have more of a work life balance, take time to check in with family and friends more often, play games, enjoy nature, take up new hobbies.

For some, and what I’m focusing on today, it prompted them to have a deeper understanding of what life with a chronic illness is like. Having restrictions put on their lives. Having to cancel holidays. Having to cancel birthdays, social gatherings, concert tickets…the list goes on. Even the wonderful Miranda Hart spoke out on our behalf!

At first, I took real comfort in the fact that for the first time in many years, I WASN’T missing out on things because no-one else was doing anything that I had to miss, or cancel at the last minute. I didn’t have to feel that pang of disappointment in missing out or being left behind. Everyone, on some kind of level, was experiencing what my life had been like and that made my daily life, selfishly maybe, much easier. Of course, I really did feel for everyone because I know what that feels like but of course there was always that element of, once this is over, you’ll absolutely be able to do all of those things and it’s important to remember that the majority of the things you’ve cancelled, haven’t been cancelled, just postponed.

But for me, this year, this lockdown has become one of the toughest times since I’ve been ill. The hidden aspects that people can’t see have been the worst ever. The pins and needles that I flippantly mentioned returning have been worse than ever. They’ve become what feels like a prison sentence. So excruciatingly painful that I have only left the perimeters of my home 5 times in over six months and those times have only been for short drives and home again. I haven’t even been able to sit and enjoy our garden. I can’t bear a mask on my face but I don’t feel safe without once so that leaves me stranded too. I have, quite literally, been inside my home for six months. The one time I tried to hang my washing out in the sun, it brought me to tears. The sunlight on my skin feels like molten lava. My sleep is worse because if I turn over and have pressure on my skin, it’s like someone has grabbed my skin and pinched every part with all their might.

And because of this, I’m afraid to say I have become a little bitter. Lockdown eased and some level of normality has resumed for many. A different normal but a normal that’s more fun and social. Only now, I see my little community online feeling battered by this because, oh how quickly some forget. When the whole of society was in lockdown it was easy to relate. To feel sorry for. To empathise. To find time.

For me and for many like me, we are still confined to our homes. Yes, I am terrified of covid, not because it could kill me strangely enough, but for the gut wrenching fear it could make my illness worse. It terrifies me that young people, my friends, could get it and have their lives changed like mine has.

But regardless, covid or not, I still wouldn’t be able to resume my life before; pins and needles for one, but on another note, covid has set me back by what feels like years. Because I haven’t seen people, socialised, been out anywhere, the fatigue is more plaguing than ever. I’m quite good at covering it now but I am well aware that I am beyond irritable a lot of the time, I’m not able to wash my hair and shower as often (dry shampoo is my new best friend). My pacing is having to be to the extreme. Whatever I do, I am doing at home, typically I am up and out of bed for roughly 9 hours out of 24 and within that I rest every afternoon. I pace my activities, typically without any music or television because my brain fog and concentration can’t cope with the overload. Having to meticulously plan out my week – if I’m having visitors, can I bake that cake. If I make that bunting, can I see that person?

Life. Is. Hard.

I have never felt so alone. So isolated.

Tomorrow, Monday 5th October, marks five years since I had the asthma attack that sparked all of this. It seems almost impossible that five years have passed, impossible that I am still so far from where I want to be.

Contrary to how this blog may seem, I am not a jealous person. I am not a negative person. I am just a desperate person, someone who is literally treading water to stay afloat. But as mum has pointed out to me, no-one ever gets to see this side of me because if you come to spend time with me or text to check in, I’m not the type of person to moan or complain or say woe is me. I’m not going to harp on about my problems and feelings because I know everyone has them and there are so many much worse off than I am. I will make you cups of tea, sit and listen to you, smile and bring you treats. You won’t see the before and after effects. Plus, I haven’t written a blog in a while which tends to be my outlet and way of keeping people updated and aware of what’s occurring.

And I have to, and do, remind myself of how lucky I am, because, as always, my life buoys have been my lockdown buddies; my mum and dad. My constants. The ones who hold me up, make me laugh, hear me cry, see my pain, feel my frustration and take it all on board even though there is quite literally nothing anyone can do. And that must be beyond difficult for them, to feel helpless and I hate that I do that to them. Nothing is easy.

And therein lies the fear. Everyone kept saying during lockdown and even now, “it would be so much easier if there was an end in sight.” And of course, yes it would. But, regardless of how long this goes on for, social distancing, mask wearing, hand washing, life postponement, it WILL all come to an end. But for me, and many others like me, we will still continue to not have an end date, and that is utterly soul destroying and at times, unthinkable.

So, we will keep smiling and keep battling and being our own self advocates and keep hoping that one day things will get easier.

But if you aren’t in lockdown anymore, try and hold onto what it taught you. It’s a life lesson we hopefully won’t ever have to live through again but could influence many generations to come.

#hairyhannah

Personal but important

This is is the big week amongst the ME community, we’ve had the international awareness day, Millions Missing event and Sunday is the Blue Sunday tea party.

Each year I tend to write a blog post to do my bit for raising awareness for an illness that has turned my life upside down. However, this year I felt that whatever ideas for posts I had, would be the same as I’ve written before.  However, for a while now there has been a subject matter that I’ve wanted to write about, something that you wouldn’t necessarily consider someone with ME would have to factor in. It’s deeply personal but something that I feel is important to share.

Before I plough ahead, I just want to put a little disclaimer in here that although I know many people will want to share experiences, advise and give me words of wisdom, I really would appreciate no unsolicited advise on this one. This is a process I’m wading through and I’m fully aware there are options and nothing is set in stone, but for now, this is where I am.

Children. I adore children, that’s one of the main reason I went into teaching. I love watching them grow, learn, laugh, interact and experience the world. And with no surprise, I have always wanted to be a mum, it’s something from an early age I knew I wanted, it’s in my very being.  I wanted to have my own children to nurture and love and care for. To have a family unit like the one I was brought up in, special and unique.

When I was first diagnosed with ME, I didn’t think far enough ahead as to how much it would change my life; in all honesty I was ignorant to how long I could and would suffer with it. But, as the years have rolled by and as the steps I take continue to be small but significant, I have started to think further ahead. I found my birthday this year particularly hard. For some reason 34 slapped me round the face. Mid thirties. Not working. Living with my parents. No more input or avenues to explore with the medical professionals. I’m not in a place to date or meet people, I can’t plan that far ahead and let’s face it, dating someone with a life like mine really isn’t that appealing!

So that then led me to think about children. It’s not just the fact that I’m getting older and my biological clock is ticking, it’s more that I have to consider how my body would cope with it. Firstly, the impact being pregnant could and probably would have on my body and illness could be catastrophic – the possibility of getting through pregnancy and then being bed bound and unable to be the mum I’d want to be, is and has to be a real consideration. And then there’s actually being a parent – there is no way I could effectively pace myself the way I know I need to, if I had a child.

Now, I know what many of you will be thinking; there are different ways of having children and I agree, adoption and surrogates are all brilliant options and ones I’d never rule out. The main factor for me is being the mum I’d want to be. Not having to worry that if I take my child out for the day, that I wouldn’t be able to parent for the days, weeks or months to follow. Personally for me, that feels like such a selfish thing to risk.

I also know that there are many mums and dads out there with ME who manage their illness and parenthood brilliantly. That ME struck after becoming parents when they had no choice but to find a way through and do it with utter brilliance and strength. But like I said at the start of this blog, these are my own personal wonderings and ramblings, at the stage of life I’m at currently and I have no specific opinions on what anybody else chooses for themselves, everyone has to follow their own path.

I also know that you never know what’s around the corner and it is always important to stay hopeful. However, I have also learnt that it is important to be realistic and to work through different things that present themselves. I almost need to come to peace with the fact I won’t ever have children, work through that new level of grief that, if I’m honest, is all consuming and overwhelming.

I also remind myself that I am very lucky to be surrounded by friends whose children are huge parts of my life. I take the most unimaginable joy from being able to watch them grow and be a part of their lives and count myself as lucky to be able to do that. The excitement and joy I have for them, and my friends in the future that become parents, is unbridled. It’s funny, there is no jealousy there at all, yes, of course there are pangs of how I wish I was in that position but I am beyond privileged that my friends want me in their children’s live and hopefully I can have an impact on those little people and be there for them as they grow.

I am also aware that my situation is just one of many out there as a reason why I may not have children. Society doesn’t like to shine a light on the tougher subjects of becoming a mum, miscarriage being one of them, and I felt like this area of ME is hardly spoken about at all, yet I know many amongst the community feel it, and feel it deeply.

Babies bring people together and for me, that is what breaks my heart the most. Not the loss of not having a child for me, but not having a grandchild for my parents, a niece of nephew for my brother, godchildren for my best friends. Not being able to make all of those memories and fulfil my dream role in life. Not being able to see that as part of my future, makes my future even more unclear for me. It’s making me re-evaluate my in purpose life and the goals and dreams I set for myself. It feels like the biggest thing that ME could steal from me and is the hardest thing to get my head around. I know I can’t be certain about anything that lays ahead, but this is just something that I’m grappling with at the moment and when weighed up, was something important to expose during ME awareness month.

Please, please don’t feel you need to comment or show sympathy, that is not what this post is for. It’s my own personal thought process and an element of chronic illness that people may not have considered. Awareness is key. Funding for bio medical research is even more key. So, this Sunday, please join in with Anna’s Blue Sunday Tea Party and help raise money and awareness for such a worthy cause. I will post the Just Giving link below, all you need to do is have some tea and cake on Sunday and donate what you’d pay in a shop for it – easiest and tastiest fund raising you’ll ever do!

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http://www.justgiving.com/fundraising/annaredhsaw2020

Keep safe and well,

#hairyhannah

 

Blue Sunday 2020

Back in 2013, the wonderful Anna from ‘M.E. myself & I’ set up a fundraising event called Blue Sunday.  I’ve thought about the best way to explain it to you all but in the end, Anna’s words from her blog seemed the way to go:

“As M.E. Awareness month (May) was approaching in 2013, I started to feel that something was needed to commemorate it. As an M.E. sufferer I am so restricted by my ill health that the ‘conventional’ methods of fundraising, such a running a marathon, weren’t at all appropriate. The success of my virtual birthday party had me hoping I could do the same again as a fundraising event.

So the ‘Blue Sunday’ tea party was born. I invited friends and family to join me online again, only this time I was well enough to have a select few join me in Real Life, for afternoon tea. I asked for small donations of the price people would expect to pay for a pot of tea and a slice of cake in a coffee shop. I uploaded photos and videos of the little event being held at home so that even those stuck in bed on the other side of the world could join in online.

The idea has since been adopted by The ME Association as their official annual fundraiser (Go Blue for M.E.) and I was incredibly moved to receive nominations for a JustGiving award and a WEGO Health Activist award.

‘Blue Sunday’ is now celebrated internationally with other sufferers hosting their own tea parties both online and at home.”

This year, for obvious reasons, Anna can’t host the ‘real life’ tea party and so the virtual tea party has become even more important.

Many of you reading this and who have read my posts in the past may now have a deeper understanding about some of the aspects of living with M.E. Being isolated and housebound. Feeling lonely and left out of society. Not being able to work and contribute, having to cancel plans that you were looking forward to. And sadly, I think many of you will be finding this lockdown much harder than we are because we are used to finding things to occupy us at home, used to spending days, weeks, months and even years trapped within our homes, we are used to relying on people to communicate with us so we don’t feel left behind.

It’s not easy. It isn’t fair.

So, this year for M.E awareness month and to support Anna, I would love for as many of you as possible to join me, Anna and the M.E community at our virtual Blue Sunday tea party. The date is Sunday 17th May…put it in your diary NOW! 

Make it fun;  dress up in something blue, paint your nails blue, make some blue bunting and play some Blue themed music. Then, bake or buy something yummy and sit down for a mini afternoon tea. Take a photo and share it with us by either sending it to me so I can post or simply tag me into your photos so I can share them with Anna. Use the hashtag #bluesunday

And then, most importantly, donate. We aren’t asking for anything big, simply a donation of what you’d pay for a slice of cake and a cup of tea if you were to go out and treat yourself.

Anna’s just giving page link is:

http://www.justgiving.com/fundraising/annaredshaw2020

This is a really strange and difficult time for all of us at the moment but it’s nice to think we can all come together for a good cause with a deeper understanding of chronic illness and how it changes and affects so many of us.

Keep safe everyone, and thank you for any support you can give,

#hairyhannah

 

 

 

Self Isolation

If you’re like me, you’ll be feeling like you’re living in a movie at the moment. Empty streets; the West End closed; panic buying; isolation; it feels very unnerving and bizarre.

I spent a lot of last week sorting through a variety of feelings and I still can’t quite properly explain and find the words to express that. I think as part of the chronic illness ‘community’ there was an element of – welcome to our world. Now that does sound harsh but bear with me.

There is a HUGE section of society who live their lives behind closed doors. I can’t speak on behalf of everyone here: this is my blog, my thoughts, my opinions. But I do know a lot of people who have ME, cancer, POTS who haven’t been shaken to the core with the news of potential self isolation and social distancing because we’ve been doing it for years.

Seeing droves of people take to social media to ‘grieve’ the loss of holidays, cancelled social events and panicking about what the hell to do inside your house for a prolonged period of time angered me. Now, I’m not a cold hearted cow: I totally get how upsetting it is to have to cancel holidays and miss out on plans but that is because that’s what I’ve been doing for almost five years now. Five years. Not seven days, two weeks or twelve. Five years. And there are many people who have been ill longer than me. So we empathise completely.

Miranda Hart took time on Twitter to silence people and make them think for a second about those of us in society who love with this daily. Once this all calms down and is managed, you will all go back to work, life, re-book cancelled plans, meet at the pub for celebratory drinks. For me, this won’t happen, I will have to continue pacing myself, self isolating and coming up with alternative ways to live my life.

The thing that got to me most though was this. Doctors putting things in place to help people cope with self isolation. Ensuring they have ideas of things to do, telling us to check in on each other, making sure doctors are accessible with information and help. Employers doing whatever they can to support their workforce to work from home. This is not the experience of the majority of us in my situation. I am now not under any medical professional apart from my GP. There is no help, no advice, there are no guidelines. We can’t get jobs that will support us working from home, even though campaigners have been working tirelessly for years to get these rights for us.

And then there are the people who aren’t following the advice to isolate where possible because it doesn’t affect them. They’re fit and healthy, they aren’t at risk. Yes, if they get this, they will feel poorly for a few days and then will more than likely recover and be fine. But, what if you came into contact with someone who lives with or cares for someone who IS at risk? You can be the carrier who spreads it the the vulnerable. And that’s me. That’s my mum. That’s my uncle. That’s my next-door neighbour. That’s my brother’s mother -in -law. They’re the people who I love, care and worry about.  So, don’t be selfish, stay at home when you can.

So, I am now drawing on my experience and have put together a list of things that I have done at one point or another over the past years that you can do over the coming days, weeks or months. Take the time to re-set.

  • Pick up the phone/skype/facetime friends and family or the elderly in your community.
  • Sign up and train to be a telephone befriender for Independent Age or Age UK.
  • Every day, get up, have a shower get dressed.
  • Cook. Try our a new recipe, play Ready Steady Cook with the random cupboard ingredients you have.
  • Have a virtual dinner party with your friends.
  • Tidy your cupboards, bookshelves, drawers. Make up charity bag donations or sell bits on e-bay.
  • Sort though your photos. Make photobooks.
  • Do a puzzle
  • Listen to a podcast
  • Watch films
  • Binge a box set
  • Play a game
  • Make up a game
  • Do a quiz
  • Read a book
  • Do some colouring in
  • Do a suduko
  • Watch YouTube tutorials and learn something new
  • Bake
  • Do some guided meditation
  • Have a pamper session
  • Have a bath
  • Sort out your make up bag/clean your brushes!
  • Give yourself a manicure/pedicure
  • Write a diary
  • Write a story
  • Paint/draw
  • Sew/knit
  • Get crafty, order a home delivery form Hobbycraft
  • Make lists of things you want to do this year
  • Make a travel bucket list
  • Take photos – your house/garden/sky/sunsets – share your experiences
  • Start a blog!
  • Go online and send cards to your friends, Moonpig etc are still up and running
  • Research your family tree
  • Limit your screen time/reading the news – that’s not good for your mental health.
  • Spread some happiness

We are so lucky to live in a time where there is so much at our fingertips. Believe me when I say, I know how hard and frustrating it is to be stuck inside. I know what it’s like not be able to go out and socialise. I understand the loneliness ands isolation. I am not belittling this situation, it’s scary but we can all help each other and hopefully once this is all over, the world will be a little more sympathetic and empathetic to those of us who will continue down this path.

Be kind. We all need kindness right now.

Let me know any extras we can add to this list!

#hairyhannah

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Dear body,

Dear body,

You’ve been with me since my first day on Earth and will be with me until my last. You’ve survived bumps and bruises, coughs and colds, chicken pox and shingles. However, I increasingly feel at war with you.

Half of me wants to celebrate and thank you for being as strong as you are. Regardless of what life throws at you, you face it every day, you don’t give up on me. You are the vessel that is carrying me through every day of living with a chronic illness. When I’ve had enough and want to throw the towel in, you don’t let me.

However, body, I feel betrayed by you. Why have you failed me so badly? I get that you had to do something to stop me from imploding, to force me to stop and rest. But four years later you still aren’t allowing me to restart the life I was loving living. I’ve done everything I can to show you I totally understand that I need to treat you with more respect. I’ve learnt that my mind is just as important to care for as my bones and muscles. I’ve taken onboard every piece of advice, kindly noted every strategy and suggestion and tried to remain upbeat and positive in order to take steps forward.

Yet, no matter how many steps forward I take, I enjoy myself that little bit too much and you punish me. Or at least that’s what feels like. You plunge me into depths that feel impossible to surface from and I have to admit, I am running out of patience, strength, hope and optimism. How long will you keep this up? I honestly can’t see when you will, and that cripples me. You must see and feel how you are defeating me? What have I got to do to let you allow me to come out of this never ending tornado?

I am so tired of fighting for you, body. I need something back. I need you to start letting me have prolonged periods of “normality” because right now I feel like you’ve plugged me in somewhere and sucked out all of my joy and hope and left me with hatred and frustration. I can usually kick start myself after a few days and go onto auto pilot of being positive and glass half full but this round in the ring has left me empty. It feels like you are winning. You’ve let me keep my hair this time round which I am so grateful for but I find myself resenting it too because people think I am better without realising that I am probably having to fight harder than I have done in a long time to stay above water.

I’ve done my best not to embarrass you; I don’t complain about the pain and fatigue, I very rarely honestly answer the question, “how are you?’ in order to not become the person people avoid because I’m moaning and ‘seeking attention’. In fact, 80% of the time I have become quite the master at masking the daily pain and presenting the illusion that I’ve had a glorious sleep and am rejuvenated. I don’t give in to the frustration of how much I love having my hair back but how devastatingly hard it can be to have to use my energy on drying it with a heavy hairdryer in the morning. What. More. Do. You. Want?

Not only are you overwhelming me with fatigue and pain but you are targeting my mind with a full on nuclear attack. I wake every day with a feeling of darkness and dread. A feeling that I just don’t want this anymore. I want to live and engage in life, I know that I have so much to live for but I just don’t want this life. I didn’t choose this life. I didn’t imagine this life. The thought of living this life without an end point is excruiciating.

However, regardless of this hourly battle, I am still trying to be kind to you because you’re mine. You’re my body and I can’t exchange you or trade you for new parts. I’m feeding and watering you, I’m bathing you and doing my new autogenic training exercises with you to make you live in the present and feel at peace. I’m trying to find good in every day and still endeavour to be kind to those around me. I’m trying to speak more kindly to myself and to you without putting you down, beating you up and berating you for every little thing you put me through. I’m working through every strategy in my toolbox to see which one you’ll be happy with to allow me up and out of this horrendous flare up. But, sadly, you’re clearly not happy enough with my homework and consistently leave the comment, ‘must try harder.’

So, I shall try harder. I will figure out somehow, how to navigate this new hurdle and do what I can to persuade you that I will pace myself better, take more care and love you for what you are and not make you feel bad by wishing you weren’t doing this to me. I am learning to try and accept you for what you are. My body.

If you could just meet me half way, that would be great.

Yours Sincerely,

#hairyhannah

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Carers

Several weeks have passed since I wrote the post I am about to publish. I still think it’s an important blog to share. Sometimes I doubt how much I choose to share about my life living with a chronic illness/alopecia but I always come back to the same thing; awareness. People need to be made aware of how these illnesses affect lives. So, here’s a post I wrote a while back but didn’t finish or post because things took a downward spiral for a while…

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This week it is carers week. A week to recognise, appreciate and thank those people in our lives who regularly look after a child, the sick, elderly or disabled to help them manage daily life.

I am pretty sure my parents wouldn’t consider themselves as my carers but, the reality is, they are.

Life before M.E saw me living a very independent life. I lived alone, cooked all my meals, cleaned my home, did my washing, food shop, held down a full time job, managed my own finances, organised social events, went on trips, looked after my health. The reality is, I haven’t been able to do this for the last 3.5 years and continue to need their support and care.

For example, this week mum and dad have gone on a mini break to Prague, a trip they needed and deserved. Now, I have coped. But without it being specifically talked about, we put plans into place to ensure I coped; my brother came to put the rubbish out on bin night, pre prepped meals had been frozen so all I had to do was pop them in the oven. I had friends on stand by incase I needed anything. I didn’t plan many activities. I can cope for a few days but what I notice is this. Taking on a few extra jobs like closing and opening the all the curtains in the house, stacking and emptying the dishwasher leave my arms aching and noticeably increase my fatigue.

And then there was yesterday. I went to Wembley to see The Spice Girls. I had not had the best lead up to it. With being here on my own and trying to keep up with wedding bits and volunteering, I totally mis paced myself. I have these times where I ignore my body because I hate it. Why can’t I just do normal things and react in a normal way? Maybe just once, if I ignore it, it will trick my body into thinking it can cope. I don’t regret going because I will have those memories for years to come but my goodness have I paid for it. This is the hidden side. The parts people don’t see. I had a bath at 12.30am when I got home because my legs were ceasing up and my muscles were twitching and cramping. I didn’t sleep because of the pain, not one minute until I eventually fell asleep at around 7am for a few hours. In those few hours I woke several times with my calves cramping badly. And then, in the days to follow, clumps of hair started to fall out. My body has a way of always informing me that I’ve pushed my boundaries too far. However, now that I am out of those moments and I am a little more level headed, I know I  survived them on my own and I need to remind myself of that. My parents need to know that too.

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My parents, my carers, need to know that as overwhelmingly hard these past few days and nights have been, I survived them. Sometimes, we need to live through these moments to realise our own strength. There is nothing anyone could have done to help me through it. I needed time, space, peace and quiet, darkness, my bath, bed and painkillers. Whether they had been here or not, those elements wouldn’t have been any different. Ok, so I didn’t eat a proper meal because I couldn’t stand long enough to make one, but I ate. I couldn’t complete the jobs I had in mind to do before they got home but the house didn’t fall down. I had to cancel a friend popping in to see me, but they understood.

This illness doesn’t just impact the person who has the diagnosis. My parents are my rocks and they are and have been my carers. As much as my illness is hidden, the care they provide is hidden to many too. What got me through the last few days has been this. I had the most glorious normal night out seeing one of my favourite bands with one of my best friends. But also, that my parents were on holiday and doing what they should be doing with their retirement. That made me so happy and comforted. But also, regardless of pay backs from doing things, ~I’ve lived with this illness for so long now, that I know these flare ups don’t last forever and pass.

I always worry about writing these blog posts because I don’t want my parents to feel guilt or worry about leaving me. But as always, I feel it’s important to write these posts because it shows this illness in all its glory. The moral of the story is, this too shall pass. And when it does pass, I might remember the pay back but more importantly I will look at the photos from the night out and remember the feeling of freedom and pure joy of that night out.

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My parents, my carers have been the ones have have got me to this point along with my friends – who become my carers when I am with them, and my CBT therapist. Where the medical profession failed me, these people held me up. They cared for me, they continue to care for me and support me to enable me to move forward, no matter how slowly that may be. They know that the joy of my hair growing is a totally separate entity to my M.E. They support me at the same time as pushing me forward. They are the people that if I were to call them at 3am asking for help, would turn up in their PJs and do whatever it is I needed in that moment. However, I am a stubborn pain in the backside sometimes and I know at times that is to my own detriment BUT I need to see how I cope on my own in order to know what I can cope with now that I couldn’t a few months or years ago. I know it isn’t okay to suffer alone and 99% of the time I don’t. I see this week as a challenge that I have survived. It’s not something I’d wish to repeat frequently because clearly it’s nice to have someone around to just give you a hug when it’s all too much but it’s also not often I dance the night away and do a long trek to and from Wembley – once in 3.5 years to be precise – but ultimately, I survived it and I’ve learnt from it. I’ve had my woe is me, cry into my pillow moment and now I move on. Forward is the only way I am programmed to move.

So, thank you mum and dad. My constant carers. I appreciate you and I am so glad you weren’t here to help me and that instead you are in 31 degree heat applying blister plasters and making your own memories. You are the best of the best, the creme de la creme and I love you.

Where would I be without you? Happy carers week.

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#hairyhannah

The blog post I never thought I’d write

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hairlesshannah

That is where it all began.

It’s who I’ve become in so many ways. Losing my hair to alopecia has formed a whole new identity for me and one that I have never truly embraced, accepted or liked. Yet, it has taught me so much about celebrating difference, taking people for who they are, not what they look like.

A week ago, I headed on my first abroad trip in three years. It was a huge step but one I was ready to take. I knew it would be fun and make memories to treasure on those days that sometimes seem unbearable. What I didn’t expect to happen…was my hair starting to grow.

When I knocked on Nik’s door last Tuesday morning, she thought I was crying because I wanted to go home. I think, along with myself, my friends and family have just succumbed to the fact that I have no hair. I stopped wishing and hoping a long time ago. As much as I’ve never loved being bald or felt comfortable or attractive or feminine, I’d made peace that it was who I was now. Even though my brows and lashes returned, I honestly didn’t think I would ever have hair again.

I have spent the last week secretly starting to get excited as each morning I have woken up and it’s still there. And not just there…GROWING. It is growing so quickly, I can’t quite believe what I touch every morning, my peach fuzz head FULL of the softest, darkest hair ON MY HEAD!

But, I’ve contained that excitement because although I’m a positive, glass half full person, I have also learnt not to get my hopes up because sometimes that disappointment is too much to bare. I didn’t tell anyone for a week apart from mum, dad, Jack & Yas…Nik is obviously taking all the credit for this and thinks we should now holiday all the time!

We captured mum’s response on video – Nik was brilliant in France and we decided not to Skype home because, who knew if it would be there the next day and that kind of news is news I wanted to tell them in person. So when we returned, I popped on a hat, chatted about our holiday and ate the bread and cheese we brought back with us and then said, very seriously, trying not to cry, “something happened while we away.” Took off the hat (at this point you couldn’t see any growth, just feel it) and got mum to feel my head – what a moment. Tears and cuddles and smiles and head stroking.

I think mum has struggled the most with my decision not to tell everyone right away – if she’d had her way it would have been shouted from the rooftops and been headline news in The Guardian! But, she understood my apprehension and nervousness but once I passed then week mark, mum said, enjoy it for what it is, tell people, live in this moment. Jack was right in saying, even if it does fall out again, at least I know now it has the capacity to grow. So, I took a deep breath and started to tell people and my goodness, I did not expect the reactions I’ve had. Don’t get me wrong, I know how my alopecia has impacted the people around me and how invested they have been in willing it to grow and for me to feel happy…but my goodness, the relief and joy on the peoples faces I hold most dearly to me – priceless.

I didn’t manage to film everyone’s reactions because technology wasn’t playing ball and some filmed but with no sound but let me tell you, I will treasure telling every single person for the rest of my life. I’ve never heard so many, “OH MY GODs” and seen so many mouths being covered followed by tears and trying to stroke or kiss my head through the screen – it’s just been truly magical.

The other aspect I’ve been apprehensive about was coming out as hairy online.  I am so aware of how I’ve felt when a fellow sufferer has posted about regrowth. Of course there is pure joy for them, but that is always tinged with a hint of sadness because mine hasn’t grown and I don’t want to rub it in their faces. This online community has been such a support for me. Alopecia UK is just an amazing charity who has been there to listen and give advice and support and I don’t want to lose that. Even though my hair is growing, I don’t know how this is going to pan out but regardless, I will always consider myself someone who lived with alopecia and will always want to raise awareness and support people who experience it.

However, equally, I started this blog to share my experiences in the hope that someone else out there didn’t feel as alone. Therefore, it’s important to tell you this part of the story too…because, even when you absolutely have zero hope left, things can happen to reignite that hope in you once again.

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I’ll keep you updated, openly and honestly with my regrowth…but for now, I’ll sign off with a slightly different name…

#hairyhannah

Grow through what you go through

Grow through what you go through is such a cliche but one that to me, does make sense. Everything that happens to us in our lives can teach us something. That something can be about the person we are, the life we lead, those we surround ourselves with, changes we need to make…the list can be endless.

I haven’t written many blogs this year, I’ve been concentrating on doing my own ‘growing.’ I’ve definitely (No Line of Duty spelling mistakes here by ‘H’) been making progress; pacing for me is key, listening to my body and being kind to myself. I’ve also started some new homeopathic remedies after my appointment at the Hospital for Integrated Medicine. If you’ve read my blogs before, you know I’m open to trying anything and everything and although it’s not for everyone, I am not adverse to trying homeopathic remedies – they aren’t going to do any harm especially under NHS doctors advice and prescription.

I’ve noticed that I’ve been able to increase my activity periods and my sleep is improving. By that I mean I’m getting longer periods of uninterrupted sleep, it’s still not refreshing but psychologically it makes a huge difference just to know my body is getting longer periods of rest. I’m managing to walk a little more and my recovery periods are shorter and less intense but again, I think I’ve been fearing that if I say anything out loud I may jinx it!

With these slight improvemnts, I immediately start to berate myself. If I can walk a little more or manage longer activity periods, I MUST be applying for jobs straight away and get back to work. Because, if I don’t people will judge me – she’s managing more fun activities but the lazy so and so still isn’t working. I am my own worst enemy. So, luckily, I had my 3 month CBT session a few weeks back and this is what I chose to talk about. And, to be perfectly honest she laughed at me. As always, she managed to explain things in a way that put my mind at ease and organised my thought processes and calmed me down.

Currently I am volunteering for 30minutes a week at my brothers school, helping children with spelling. I am trying to slowly grow my baking business by posting orders which is going well. I am doing endless jobs for my brothers wedding in July and working full time on my health and getting better. All of these things that are important, enjoyable and helping me meet my targets. She reminded me that in order to build myself back up, I need to focus on the enjoyable things, the things that bring me joy. Going on mini holidays for the first time in three years aren’t normal people holidays. They are planned and paced and for short periods of time – if people want to judge, let them.

My body is VERY quick at reminding me that I am still fighting a daily battle. If I do something for too long or don’t pace myself, the pain and fatigue can be overwhelming. I didn’t give myself proper time to recover from Wales a few weeks back and had a lot of baking to do when I returned and as a result I got a cold. A simple cold. A head cold. And it took me down. I felt like I’d been steamrollered, it was horrendous yet it forced me to stop and get my strength back. Therefore, no matter how much I feel like I’m improving, I have to remember to build on this gradually. Increasing activity times and exercise times by a minute every few weeks…so why on Earth would I be searching for full time work?!

My therapist also told me that I should be taking time to enjoy this new stage that I’ve reached. She said I’ve worked hard to build myself up to this point so why rush it? Stop. Enjoy being able to do a little more every day. Don’t rush things, life doesn’t have to always be at full speed. And she’s right. It’s nice to be able to enjoy the sunshine this year without the pain of the pins and needles. It’s nice to build on my work from home with my baking. It’s nice to not feel utterly exhausted after spending time with friends.

And then we talked about work. And this is a huge bone of contention and confliction for me. Since I can remember I always wanted to teach. I love to teach, I am good at it and it’s formed my identity for as long as I can remember. It’s a stable job with great holidays, a great pension and so many other positives. But if I am being hand on my heart honest, right now, I don’t know if it’s a profession I want to go back to. There. I said it. I not saying never, I’m just saying, not in the foreseeable. There are a number of factors that have lead me to this decision; the work load and stress is unreal but also, simply the reality of the job just wouldn’t work for me now. You are on your feet ALL day. Children are needy and loud and exhausting. You have to work at home, do unpaid overtime, worry about the levels and the children and the parents…I’m just not sure my mind and body would cope with it.

It’s a hard thought to contemplate and one I need to work on because, being typical me, I don’t just factor myself into this, I factor other people in too. I’ll be letting my family down if I don’t go back to this. What will people think of me, how will I cope with people’s questions about why I’m not going back into teaching? In the harshest way possible, none of that matters. As my therapist keeps trying to hammer home to me, these people will simply want what’s best for me and my health, They’ll support and love me whatever I decide as long as I’m happy and healthy and of course can eventually support myself financially. Again, typical me is worrying about something that is way way way in the future but it’s a thought and worry that I need to start sorting through and coming to peace with.

As I wrote in one of my first ever blogs, I am a planner. I like to know what’s coming up next and I am a people pleaser. I don’t like to let anyone down. So, being in a position where I need to put myself first is still a scary thought. I genuinely have no idea what is going to happen tomorrow let alone in six months or a years time. Part time work is still a long way off let alone full time so I need to calm the heck down and go and make some bunting! I just needed to write and get this all off my chest; I’d be interested in how other chronic illness sufferers knew when they were ready to start working again and how they manage it? Please comment down below!

#hairlesshannah

 

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Planning for new adventures

It’s taken me a while to sit down and write this, rightly or wrongly for fear of judgement from people, well, strangers mostly.

April is just around the corner and marks three and a half years since I’ve been home. Funnily enough, that doesn’t faze me, time will pass no matter what I do and today, it’s something that doesn’t bother me – tomorrow could be another story. I still harbour many feelings about what I haven’t done or been able to do since becoming ill and very near the top is the loss of travelling. I loved to travel and living in Dubai enabled that love. But in three and a half years I’ve had exactly 5 nights away from my own home and bedroom and they were all over two years ago.

The thought of not being in my safe place, surrounded by the things I need for any eventuality, scares me. Extreme but true. When I’m at home, in my own space, I feel relaxed and safe and comfortable in the knowledge that whatever my mind and body needs, I know where to get it. But this year, I set myself the goal of changing that, of taking the next step forward in evolving my life as I now know it.

As always, mum has been by my side and made this happen far earlier than I planned and took the decision away from me – which in all honesty was probably the best way to do it! So, next week, for two nights, mum and I are having a little road trip back to Wales. It’s home from home really as it’s where mum was born and raised – Wales is in my blood! So, it’ll be familiar and “safe.” There’s no flights involved or tiring expeditions planned but still it’s the unknown and I am nervous. Then, my friend Nik has persuaded me to take it one step further and in May is driving me to stay in France for two nights! Yes – abroad people, ABROAD!

The knowledge and skills I’ve gained through CBT is standing me in good stead as I am able to rationalise my thoughts now and stop myself from catastrophising.  So over the last few days when I’ve been worrying, I started to write a list of all the positives that will work for both mini breaks that are planned:

  • I’m with mum/Nik
  • They knows me and my M.E inside out
  • We are driving there
  • I can put everything I need/might need in the car
  • It’s only two nights
  • It’ll be fun
  • It’ll be good to get some sea air
  • It’ll be good for me to be in a different space
  • It’ll give me something positive to look back on
  • It’s an adventure

I know I’m not alone in the worry side of things. Living with M.E has changed my life beyond recognition and there are so many things I can’t do but there are also so many things I CAN now do with careful planning and pacing. But that doesn’t stop the nagging in my mind about the judgement from others – if she can go away for a few nights, why can’t she get a proper job? If she can go away, she must be better. If she can go away, she must be lying about her illness.

Now, I know those who know me, know the truth. I know that’s what’s important and I know that’s what matters. The problem is, M.E is still such a disbelieved diagnosis with people thinking it’s a lazy persons illness. And for that reason, I always feel like I have to justify what I do. It’s a constant battle because people don’t see behind the scenes, behind social media. They don’t see the daily problems. The work and effort it takes to show up and do things. I recognise this is something I need toward on because it’s my issue – people probably couldn’t give two hoots about what I am or am not doing!

So, my question is – for anyone reading this with M.E or any other chronic illness, what hints and tips can you give me for travelling but also for dealing with the judgement…it would be so appreciated!

I will let you know how we get on next week and if I come up with any nuggets of advice that I feel might help anyone else, I’ll let you know.

But for now, I’m off to write my packing list so my brain fog doesn’t make me forget anything of importance….

Have a wonderful week,

#hairlesshannah