It’s been a while…

It’s been a while since I sat at my laptop and wrote a blog post. It’s been such a tumultuous time, so much going on in the world, so many changes and because of that I haven’t felt like publishing a blog post. However, I had a lovely chat with a friend as she picked up a cake order a few months ago. She asked why I hadn’t published any blogs recently as she’d missed my reading them and when I said I had been nervous to as I hadn’t written for so long, she said, you really should write again, it’s always eye opening, interesting and educational. So, I thought, maybe I should.

As we do do throughout our lives, we live and learn. There are things that I am always a bit scared to write on here for fear of upsetting people or saying it in the wrong way. But then I remind myself that this is my safe space, it’s my truth and it’s always been about getting it out there to educate people on life with an invisible illness.

In October I will have been home and ill for 7 years and let me tell you, it truly feels like it’s been that long. And in all honesty, for some people around me, I think it feels that long to them too and not always in a good way. I have definitely felt the pain from some being ‘over it.’ At times, I feel like I am becoming more and more invisible in my own life, absent from it in so many ways. And then it dawned on me that by not writing my blog posts anymore, that’s another area of my life that I’m absent from. In a way, I’ve stopped advocating for myself and the M.E community that I hold so dear.

Therefore, it felt fitting to publish this post today, on May 12th, which is the Millions Missing and International M.E Awareness Day.

I am having to remind myself on a daily basis that I do live in my own bubble. A bubble that allows me time to think over the smallest of things and dwell on them. I can’t have the release of getting up and on with my life in the way others can to distract from things that happen. So, things that upset and hurt me, probably sting for longer because to me, they are much bigger. Losses feel bigger, hurt feels harder, sadness feels all consuming and moving on take longer.

Los is the big one at the moment. No-one likes to lose anything in life. Loss hurts. It cuts deep. This illness has taken so much from me and each time it takes something, I have to deal with that and reconcile it. Lockdown caused everyone to lose their freedom in many ways and that was so tough and yet it was nice because people gained an understanding in some ways of life with a chronic illness. However, here we are, lockdowns down and freedom day passed and I am still in my own form of a lockdown, like so many others. Limited by my facial pain and fatigue, having to consider every little thing as to if I’m able to go somewhere and do something. That in itself is exhausting.

I feel in a very precarious situation where I don’t want to lose any more from my life. It’s like I can’t afford to because I’m not in a position to go out and replace it. However, I am growing in strength. If something doesn’t add value to your life, makes you feel worthless, causes undue stress hurt and upset and makes you feel disposable, that is not something that needs to be kept or treasured. But that doesn’t mean it makes it easy. What is does mean is that it feels like my little bubble and world gets smaller. I’ve always been someone who lives in a world that feels big and open so getting used to ‘smaller’ takes some time.

The frustrations that comes with living with a chronic illness are also heightened. I can be in a room full of people and feel invisible, like I add nothing, like I want to scream. People who live with chronic illnesses may spend the majority of their time at home, resting, sleeping, pacing – but we do have lives. Lives that contribute to others and to the world. We listen, we read, we watch, we hobby – we can talk about more than our illness, so ask us. Don’t forget us. Show an interest, ask questions, you might be surprised by what we can and do, do.

I am in awe of the things that my online friends with M.E achieve. None more so than Anna, the Blue Sunday QUEEN! Once again, Anna trusted me to help her with the fundraising packs for the 2022 event and we went big! We made limited edition napkins alongside the 60 fundraising packs and everything sold out within 24 hours of their release back in March. It may not seem a lot to some, but to us it’s huge. We spend so much time planning, making and worrying about if they’ll sell, if people will be interested and for the second year in a row we had a cry at how much love and support we recieved.

This tea party means so much to me, it’s a day where the M.E community comes together to raise awareness and money for M.E. Seeing friends and family host tea parties, have fun but more importantly, show their love, support and understanding, it’s beyond words what that means.

Sunday is just around the corner but there’s plenty of time to dust off a tea set, bake a cake and brew some tea…and more importantly, donate some money for such a worthy cause. I have attached the link for the fundraising page for Action For M.E, the charity we support as a family. So if you can spare the cost of what you’d pay in a shop for a cuppa and a slice of cake, I’d be so very grateful.

http://www.justgiving.com/fundraising/bluesundayaforme22

Hopefully I won’t leave it so long until I write again – until then, bring on Blue Sunday!

Hannah

Advertisement

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

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

Image

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

Image

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…

*************************************************************************************

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.

IMG_2344.jpg

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.

IMG_2201 2.jpg

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.

IMG_1425.jpg

#hairyhannah

Image

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

You’re still sick?

During my CBT session this week we talked for a little while about the fact that it’s almost three years since I got sick and flew home from Dubai. It’s funny because leading up to the 1 year/2 year milestone I was very hung up on dates and times whereas this past year I have focussed very much on the here and now, taking each day as it comes. But it just naturally cropped up with something we were talking about and it really felt like someone had punched me in the stomach.

Isn’t it funny how such a small thought can up root so many feelings and emotions? I mean, nothing is going to change just because it’s coming up to three years, it was just saying it out loud felt like it was a really long time. And it is. However, this time, I had a little tear over it but was able to chalk it down to, yep, it sucks but you know what, it is what it is and time passes whether you feel sad about it or not.

The thing that I am struggling with at the moment however, is feeling like I have to justify myself a lot more. In my CBT session we talked about how someone had asked me recently if I felt like I was getting better. People, see me out or posting online, see me smiling and happy and coping slightly better with things that perhaps I wouldn’t have a few months back. But, I honestly didn’t know what to say. Yes, I feel like I am taking steps forward but am I feeling ‘better?’ No, not really. And that’s why I love my CBT sessions because my therapist was able to explain something in a way I hadn’t thought about it before.

She totally understands my life living with ME. She doesn’t think it’s in my head, she doesn’t think I’m a weak female and she’s always honest with me. She’s never ignored the fact that it is a chronic illness, one that has no known cure or treatment and one which I will live with, most probably, for the rest of my life. However, when we started talking about me ‘getting better,’ she explained it like this: She has asthma. She can live her life because she’s put things in place that help her to do this i.e. medication, exercise and a healthy diet. If she were to take these things away, her asthma would become worse and she wouldn’t be able to manage her symptoms and wouldn’t be able to continue with her daily life. This is the same for most chronic illnessess. I am able to manage my symptoms better now. I am kinder to myself and follow my set targets to the letter because I know that if I push those boundaries, I am going to suffer and I am going to suffer badly.

If I were to take away all the strategies, medications and methods I have in place, I would be back at square one. Well, maybe not square one but pretty close. My life has changed forever, I will always have to be aware of stressful situations, not pushing myself too much and keeping a very close eye on what my body tells me. That doesn’t not mean I am lazy. That does not mean I don’t want to work. That doesn’t not mean I don’t want to be independent. That doesn’t not mean I want to miss social events. It means that I am managing my chronic illness on a daily basis in order to live an improved version of the life ME took from me. But, as always, don’t always be fooled by my smile and the words, “I’m fine.” I push myself and I show up because I refuse to let this illness beat me,that doesn’t mean I’m better.

It’s funny, some of you may know that my eyelashes are growing back and, even if I do say so myself, they are pretty damn gorgeous! But to some people it has indicated that I am on the road to full recovery. Nope. My alopecia is unrelated to ME. Yes, it is an auto immune disease but just because my body is producing hair again does not equal me recovering from ME. Indeed, it most certainly makes me feel better in myself and has grown my confidence but it hasn’t stopped my constant fatigue, joint and muscular pain, light and noise sensitivity, pins and needles, insomnia… do I need to go on?

I’m not complaining here, I think I am more at peace now with my situation than I’ve ever been. It doesn’t stop me from having hours, days or weeks where I feel utterly devastated by what’s happening to me but this is my life. I only get one chance so therefore I need to appreciate it, smile and ignore the people who question if I’m still ill or not. I posted a quote on my Instagram the other day which struck a chord with me: It doesn’t matter if your glass is half full or half empty…be grateful that you have a glass and that there’s something in it.

Have a fab weekend.

#hairlesshannah

Image

An open letter to my GP

You have been my GP for over 25 years, you know me and my family well and have been there since the start of my illness in October 2015.

We haven’t had the smoothest relationship since my diagnosis of alopecia and ME/CFS, at one point you even rang me up to apologise about your conduct and approach to my condition. You apologised and promised that you would use my case as a learning curve so that any other patient that presented with my symptoms would not be treated the way I was.

After this, I didn’t see your for a while as I was seeing specialists and have been having CBT with the most wonderful, caring and understanding therapist I could have wished for. But, in seven sessions, my NHS input will finish and if I want to continue with CBT, which I do, I will have to pay for it privately. But, myself and my family also felt, in a way, that it’s the NHS washing their hands of me, abandoning me, because they don’t know enough about ME. So, that is why today, myself and my mum came back to you.

We accept that you won’t have all the answers or know everything about ME. As a teacher,  I never knew all the answers but if that was the case, I would research, refer and call specialists so that I could help and support the parents and children in their darkest hours of need to the best of my ability. I would never do what you did to me today.

Today, you sat in front of me and my mum and said that you had no time but that I had all the time on my hands to research, make phone calls, request tests and go privately.

Let that sink in for a minute. You have no time for me.

Now, let me ask you to digest this. Yes, I have time. But it is not my choice, it is not a holiday. I have a chronic, hidden illness that has robbed me and continues to rob me of my life. Myself and my parents have researched, spent money, done everything we can. Every test and specialist I have seen has been as a result of our suggestions to you. But today, we came to you because we needed help and support. We have hit a wall and needed suggestions of people, places, trials or just a simple offer of, “let me see what I can find out and I’ll get back to you.” Instead, you quite simply said you have no time.

Social media has given me a wealth of knowledge about my condition. I’ve heard about countless heartbreaking stories of suicide from patients who have received no help or support, who have simply been left to hope and deal with the cards they’ve been dealt. I’ve read of people no longer having the strength or support networks around them to keep fighting so just live with this illness, not having much of a life. I have never given up hope, yes, I’ve had my dark days, but I’ve always had the hope and belief that doctors and specialists would also not want a 31-year-old woman to just accept this is her life. But today, you changed this. Today, you knocked me down and I felt bereft.

At no point today did you show any empathy or understanding. You commented on my weight several times and yes, I know it is an issue – partly due to the ME, partly because of the drugs I’m on and partly because it’s been an issue for a while. You offered no suggestions of help or support, you asked if I was pushing myself to exercise, suggesting GET – by doing this you further emphasised your lack of knowledge of ME and your lack of bedside manner.

I ask, if you will, just for a minute to put yourself in my shoes and think, could you live like it for a day? Not just with the physical and hidden symptoms but with the loss of work, social life, income, and independence. And then consider how you’d feel after living that way for two and a half years.

I will pick myself up again, my family and friends will make sure of that. And we will keep on fighting. But as my dad said, we now know the NHS has abandoned us and we will have to go forward privately. You have no idea of how that feels, and I hope you nor anyone you know and love ever has to, because believe me, it is a horrendous prospect. It’s lonely and scary, it’s worrying and frustrating.

I would assume that like teachers, you have training each year to update your knowledge. May I suggest that you put forward ME/CFS as an area for all doctors at the practice to learn about, because the thought of another member of our community leaving their appointment feeling like I did today, leaves me heartbroken.

Yours sincerely,

Hannah

Image

Health Update Time

The time has come to publish a blog that I’ve been writing gradually over the last three or so weeks. If you’ve been with my blog since the beginning you will know that writing has been an outlet for my emotions and has proven to be very therapeutic. However, it also lays me bare and it can be quite daunting knowing that my life is out there for the world and his wife to access and judge. That’s why I haven’t pressed publish on this post until now because it’s been a tricky few weeks and my writing is quite raw, but, it is my way of communicating so it seemed silly to write it and not share. I have no idea why but I find opening up verbally to the people I love really difficult. Not because they won’t listen, support and comfort, simply because I find it hard to put into words sometimes – odd when I can write without difficulty right?!

I’ll start from the beginning. A couple of Fridays ago Dad and I went to London to see Lumiere London. It’s something I’ve always wanted to go and see and take photos of and this year I felt strong enough to go and see some parts of it.  I cannot explain how wonderful those few hours in London were. Although cold, London was still. No wind, rain, it was at night so no sun…I was able to walk outside without intense pain on my head and face for the first time in well over a year and it felt liberating. So much so that I ignored all the other symptoms as they began to creep up – knees piercing, muscles contracting, headache niggling and fatigue enveloping me with each step. But I didn’t want it to end, I wanted a normal night and to enjoy the moment, a day or two pay back would be worth it for this moment.

 

Nah. My body was not happy with me. Saturday lulled me into a false sense of security as I woke up feeling not too dissimilar to when I over do things but by Saturday night I was in a world of pain and this continued day after day for almost nine days. This is often the case with ME, post exertion malaise will often only properly kick in until 24 hours after the activity. With this pay back came a world of grey and I couldn’t shift it. I couldn’t really focus on anything other than the pins and needles, the joint and muscle pain, the fatigue on top of fatigue and simply how low I felt. I was well aware that I wasn’t really talking to anyone, friends or mum and dad and I know how frustrating, irritating and annoying that must have been to live with but I couldn’t face it any other way. By talking I would cry and crying is exhausting and I literally didn’t have the space to exacerbate the hell I was experiencing. I wanted to be alone, in silence and darkness and to hibernate until it passed.

But for me, the hardest thing was a new symptom. Rage. Anger. I am not an angry person but honestly, I wanted to smash things. Break, punch, scream…I was so angry. Angry at myself because I hadn’t paced myself: I’d ignored all my CBT “training” and my body turned round and basically punished me for being so stupid. Then came the anger because I am done with this life I’m living in. For others I guess it’s easy to think I am doing well – I still smile, I’ve had a book published and I make cards and pom poms which is an improvement. I agree with that. BUT, and it’s a big but…I live every day at a level people take sick days for and when I push myself, what I experience is something most can’t contemplate because it’s hidden and it’s misunderstood. That place that I live in day-to-day is lonely and frustrating. I am not better, I am not well.

I did have a CBT session thankfully in which I cried…a lot…she knew something was up. And as always, she was fantastic at convincing me that I need to focus on the positive that I had such a lovely time in London and not to allow it to put me off doing it again because I need to throw caution to the wind sometimes and live. She explained it that if she, as a runner, suddenly went from running a mile and thinking she was doing well so went and ran a marathon the next day, her body would make her pay and that’s the equivalent of what I had done. And I get that, but as I said to her, what I did in London that night was a fraction of what I’d have done in my previous life and it just seems so cruel and unfair that this far down the line I still can’t.

I’m angry that the life I lead now when I have a good day, is like the couple of days after you recover from flu and think – phew I feel a bit more human today. We did laugh though when at one point she said – just tell me all the things you’re angry about, which I did and then added, “I hate that I’m making f**cking pom poms and I am capable of so much more!” It just sounded so juvenile and ungrateful that it jolted me a little. I love making crafts but I can’t make it into something I’d love to because I don’t have the brain or body capacity to, so when you break it down, I make pom poms when I used to teach and make a difference and I just feel like my brain and body is rotting and isn’t good for much.

It’s so hard accepting that you are experiencing a hellish few weeks but that when you feel “better” you will simply be back at the level that most people couldn’t cope with. I have forgotten what it feels like to wake up and feel refreshed from sleep, to have a day without pain, to wear make up or have hair, just to feel nice. It’s not a pleasant place to be and it’s a daily battle to keep taking steps forward and bury the negatives and focus on the positives.

I mean – I did warn you that this post is a brain dump of everything I’ve been feeling, it does seem over the top and desperate but I guess that is the truth of it at the moment. ME isn’t a straight path. You take a few steps forward and then from nowhere you are flung ten steps backwards. Being in such a dark place is scary which is why I am grateful for the antidepressants at the moment because I know I need them. It’s children’s mental health week this week and now, having lived with an illness that’s so hidden and misunderstood makes it so much more important to spread awareness for these types of illnesses because they can so easily be missed, misunderstood and belittled.

Thankfully, with the help of some puppy love, brownies and time, I am just about out the other side of the pay back from that Friday three weeks ago and I will now continue with my targets and pacing and claw back some of the steps I’ve taken backwards.

puppy

Remember, be kind to everyone you see. You never know what they’re dealing with.

Happy Thursday.

#hairlesshannah