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.

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



It’s the little things

This week saw me thinking about my six year milestone. Six whole years since I ended up in hospital, started to lose my hair and never recovered from glandular fever.

Six years is a long old time. It’s the same period of time I taught at my first ever school. In those six years of teaching, I developed my skills, taught 180 children, went on courses to learn new skills and climbed the ladder. I moved away from home and bought my first flat, I travelled and threw lots of infamous Halloween parties. I loved and lost, I laughed and cried, I had days out and days in, struggled for money and had several bad flatmates! I made the decision to move Dubai and spread my wings.

I also, like anyone who has their health, took for granted all the little things in life. I moaned way too much about way too many insignificant things. I sweated the small stuff and I do regret that, because now, it’s the little things in life that keep me going but that I also miss more than anything.

It can be really hard to stomach all the life changes I see in the people around me whilst I feel so static. So much has changed over the these past six years, sometimes I feel totally invisible from the world and from my life. I work hard to stay visible and do what I can to contribute to the world and to those around me. But at times that isn’t easy.

Over the past six years my illness has fluctuated and I’ve had endless hurdles to jump and navigate. The past 18months however, have been tough though, my allodynia in my face holds me captive, it’s robbing me of so much. I’m just not able to do the simplest of things and sometimes that takes me by surprise too. For example, the other week (before petrol shortages) I went for a little drive to fill up my car, but when I pulled into the petrol station and got out of the car, it was really windy. So windy infant, thatI realised I wouldn’t be able to stand outside for the length of time it takes to fill my car without being utterly crippled with pain. So, I had to get back in the car and come home. As I say, it’s the little things that seem so simple that I just cannot do.

So, here are the small things that I miss more than anything and that maybe next time you do them, could soak them in and live consciously in those moments for me, do them for me while I can’t….yet.

  • letting my loved ones kiss me on the face
  • having a hug where I can bury my face into my hugger
  • standing in the sunshine, closing my eyes and soaking in the rays for a few moments
  • going for a walk, in any weather
  • letting the wind blow my hair around and not worrying how messy it’s making it
  • putting in a pair of earrings
  • wearing some make-up and feeling great
  • going on little adventures and taking lots of photographs
  • walking around Greenwich Market on a Sunday
  • having a shower and letting my face soak in the hot water
  • sitting outside
  • filling the car up with petrol, even when it’s windy
  • wearing a face mask

Actually I’ll pause the list here as there’s a story behind the ‘wearing a mask’ bullet point, one that I think is blog worthy!

I can’t wear a face mask as it’s too painful so I wear a sunflower lanyard for invisible illnesses. I still wear it now as if I could, I would still be wearing a mask out and about. I was out the other day on one of my first solo trips since shielding/lockdown/pandemic. It is taking a lot for me to do these trips but I’m making myself do them. I sat down in M&S for a little rest, plenty of room on the bench in the middle of the shoe section. Along came two daughters, in their early 40s, with the mum. All wearing masks and looking for somewhere for the mum to sit and try on her shoes. There was plenty of room for me, a gap and then their mum to sit, so I smiled and said, “she’s welcome to sit here, I won’t be long.” To which she replied, “I’m not sitting my elderly, vulnerable mum next to an anti vaxxer.” WOW! I’m afraid at that point my own mum came out of my mouth…”Pardon me?! I am double vaccinated and wear this lanyard for a reason.” To which she replied, “Those lanyards are a good excuse for anti vaxxers to get away with whatever they want to.” I stood up and politely thanked that ignorant woman for making one of my first shopping trips out so easy and without anxiety. Another example of how we should treat people with kindness because we never know what’s going on!

Back to the last few on my list!

  • wear a hat and scarf and not worry about them touching my face
  • having a fan on/air con on/window open in hot weather and letting it blow on my face
  • not having to weather watch anytime I want to leave the house
  • crying without tears burning my face
  • being able to be a bit more spontaneous

This list is obviously just linked to my facial pain, if I linked in all things I miss that M.E robs from me on a daily basis, it would be one hell of a list! So basically, what I’m saying is, enjoy the small, seemingly insignificant things. Because the bigs things are great but sometimes it’s the little things that enable us to strive for and enjoy the bigger things in life so much more.

Have a lovely weekend everyone,

Hannah x

An open conversation

I feel like I need to start this blog with a little trigger warning as this post deals with topics about mental health, morbid and suicidal thoughts. 

During 2020 and continuing into 2021, there has been a huge emphasis of shining a spotlight onto mental health, and rightly so. 

The pandemic has shone a light onto the impact that many varying factors can have on someone’s mental well-being. I’ve written before about how our brains should be cared for just like we care for other parts of our bodies but that for some reason, if we need to medicate our brains because they’re struggling, there’s a stigma attached and an element of embarrassment and shame.

I have been writing in a separate diary over the past year as an activity to help me with my mental health and until now, haven’t felt strong enough to transfer some of my thoughts and feelings into a blog post. I wasn’t sure if me writing such an open, personal post was the right thing to do, especially as I am still learning to deal with things at the moment. Will it make people pity me, will people think I’m attention seeking, will it grow the stigma that M.E is a “psychological” illness? I guess there is a possibility for all of this but ultimately, I feel like it’s an important post to share, just like I have every other aspect of my life over the past five and a half years. M.E is a physical illness that has a huge impact on mental health; the complete 360 change it has on lives coupled with being under researched and underfunded leaves those with the illness feeling abandoned and alone. People living with M.E often feel afraid to speak openly about the impact it has on mental health and that’s why I, along with my families support, decided to write and post this blog.

A while back, I watched three documentaries on TV, one about Caroline Flack, one by Roman Kemp and then the Oprah interview with Meghan and Harry. As I was watching them, along with the heartbreak I felt for the people featured and their families, I couldn’t help but feel a deep sadness at seeing so many similarities being mirrored back at me.

Lockdown has been tough on everyone, we all have our stories to tell, we all know someone who has suffered. For me, it lead me down a path which was quite frightening. I’ve always been open about the fact I’m on antidepressants. Living with M.E. has had a real impact on my mental health. The lack of understanding and help from the medical professionals has left me feeling like I’m fighting a losing battle and antidepressants helped to level me out. However, during lockdown, those antidepressants started to lose their magic.

The buzz around mental health is that we all need to talk. But how do we start those conversations? If you really are in dire need of help, initiating that conversation feels like the hardest thing on Earth. I can’t tell you how many months I suffered in silence, not knowing how to verbalise how I was feeling to the people I needed to reach out to. Convincing myself that it was futile trying to reach out and talk because ultimately it felt like there were no answers or solutions to my situation. When those thoughts and feelings appear to be that big, reaching out and talking is not easy. 

I ended up on a downward spiral, not realising that my thoughts of feeling lonely, sad and helpless had seamlessly turned into thoughts of, it would be so much better for so many people if I wasn’t here anymore.  And all of a sudden, there I was, in a scenario of finding comfort in the thought that I would be helping those I loved, if my life ended. They wouldn’t have me as a burden anymore, they wouldn’t have to adapt their lives for me, they wouldn’t have to look after me, fill in forms for me, listen to my woes and comfort me. No more frustrating doctors’ appointments, no more researching specialists, no more endless talks about how to help and support me emotionally, financially and physically. I could remove all of that by simply removing myself. 

I was aware that I wasn’t really sending my usual responses to texts from friends, I was definitely quieter in myself and felt like I just needed my own space but equally was pretty good at putting on a smile, trying to keep busy and distract myself. On the face of things, I’m sure I would have appeared fine but underneath there was a deep hatred of myself and my life and I no longer felt like my contribution to life was of any importance.

Luckily, in the week where things were starting to bubble over, I had a CBT session booked in and it all flowed out. I guess, although I have a trusting relationship with my therapist, she’s still someone detached from my life whose job it is to listen to me so I didn’t feel like I was burdening her by offloading. She explained to me that she thought I was experiencing ‘morbid thoughts’ rather than suicidal thoughts because I explained I hadn’t seriously thought or considered how to end my life, more of, if I did die, that was fine in my head. However, there was clearly something urgent that needed attention because the lines between morbid and suicidal thoughts can blur quickly.

Eventually I was referred for a phone assessment (because…Covid!) at a mental health hub which, of course, has a story to it…somehow there is always a story to lighten these situations with me isn’t there? The assessment had endless questions, some leading back to my childhood but the one that ended in me telling the assessor he was talking absolute bollocks was this: he made the link that my brother is almost 7 years younger than me. He explained that in his experience, parents who have a daughter first and have a big age gap between children are often disappointed as they wanted a son. They try and love the daughter as much as possible but in the end, try for another child and if they have a boy, which is what they always wanted, they give all their love and attention to the boy and the first child and daughter gets pushed aside and feels unloved and that’s where a lot of feelings of rejection come from…..YES! THIS IS WHAT A TRAINED PSYCHIATRIST SAID TO ME! I kid you not. The assessor didn’t react kindly when I told him he was speaking absolute bollocks and I’d like to move on to the fact I have a chronic illness and needed some actual help!

Anyway, eventually I’ve ended up on an extra anti-depressant added in top of the one I already take. They help for sure, and I know I am in a much more level place but admittedly I am still struggling. I still find it hard to talk about it, life seems very overwhelming and scary and daunting a lot of the time and I’m still in a position where I struggle with that because there really isn’t a whole lot that can be done to improve that. I also find myself often brimming on the verge of tears which isn’t helpful if you need to talk and explain how I’m feeling and what I’m thinking.

But circling back to the documentaries I mentioned earlier, I watched them and each of them hit home for different reasons. Listening to Carline Flack’s mum, sister and friends was heart-breaking: seeing the impact of her no longer being here showed me that by taking my life, I would eradicate my own pain but leave the ones I love the most with more pain and changing their lives forever and not for good. But hearing how Caroline never reached out and never asked for help…I got that too, having been that low, I can totally see how when life feels that overwhelming, you can only see a few options. The British press cornered Flack into blurring those lines from morbid thoughts to suicidal thoughts to actioning them. And that’s why I felt so sad for Meghan Markle too – how dare online trolls and “celebrities” like Piers Morgan decide that she was ‘making it up’ to get sympathy. This is exactly why there is a stigma and people don’t talk because if we do, we are seen as attention seeking or lying. 

And then watching the Roman Kemp documentary, that made me start to think about writing a blog because he spoke about the importance of sharing our stories and experiences because we need to end the stigma. We need to openly talk about the places mental health can take us and by sharing our experiences, we may just help someone else in that situation.

I know what I am writing here seems very bleak and worrying and it is, but I think it is also key for you to know that sometimes, people who are on anti-depressants can have days and weeks or months and years when we are okay! We don’t always want or need to talk about our situation (s) and sometimes distraction and pretending things are okay is the best way to be because sometimes faking it until you make it is the best way forward. I can be my own worst enemy and not openly ask for help or initiate conversations and struggle alone but equally sometimes I am perfectly fine.

Deciding to post this blog now seemed like the right time as I’m approaching my 35th birthday. There have been times in the last year when I genuinely didn’t think I’d be seeing this birthday and equally didn’t want to. Times when I found comfort in the fact that I may not have to go through another milestone whilst feeling so sad about all the things I haven’t experienced and may never get to. However, I am now starting to see my 35th birthday as a milestone I will be reaching and I will be experiencing with all the people I love and who love me. Yes, I am still carrying so much sorrow and pain attached to so many things that I can’t really go into but the difference is, I can acknowledge these feelings but still want to exist. I struggle so badly with not knowing how on Earth I get to move through all of this but then, who does? I am so very lucky in so many ways and this birthday is one to celebrate and one to acknowledge.

M.E is a tricky illness on so many levels and I guess lockdown has impacted me in the sense that I will often offload to my friends or my brother when it naturally comes up in conversation. I couldn’t or didn’t feel comfortable doing this during lockdown via Skype or Zoom, over the phone or text, those types of conversations, I felt, needed to be in person. Being single with M.E means I also don’t have that partner to share with, to confide in and lean on and that’s tough too. Now, don’t get me wrong, as I’m sure I mention in almost every blog post, my parents are the greatest but having this conversation to their faces, as my parents, the thought alone of sharing how dark my thoughts were, was too upsetting because I knew how it would impact them and make them feel. Especially in lockdown when they themselves couldn’t escape the house, talk to their friends or have the release of swimming and golf to use to deal with the “home/daughter” situation! And at this point, I’ll say it again, talking about mental health is not easy. Starting that conversation is not easy. Dealing with the outcomes of those conversations is not easy. And I still don’t know the best way forward or how to appropriately deal with matters of the brain.

I suppose the reason I’m writing this blog is for a few reasons. One, if you don’t feel like you can reach out and talk to anyone, sometimes writing down how you feel helps or reading other people’s experiences let you know you aren’t alone. Two, there is help and support out there. Medication can and does help if you’re on the right dose. I’m not ashamed to be on them but equally I struggle with the idea that it’s medication that keeps me buoyant and that if I wasn’t on it, my depression would be all consuming and that makes me sad. Three, there might not be solutions to your problems but finding a way to somehow share and talk, it does help and it does lighten the load.

And now, although things still seem quite heavy and never ending, I try to focus on the reasons why I am here and what I contribute to people’s lives in a positive way rather than convincing myself of the alternative. The mind is such a powerful beast, it’s so scary how it can persuade you that your friends think you’re boring and not worthy of their time, how you’d be better off dead than alive because you’d free people of the stress and strain of their relationship with you. But then I am also realising what a beautiful thing your mind can be with the right nourishment, being kind is so important, not just to other people but to yourself. And I guess that’s what I find hardest, learning to like the person I am and the life I lead with M.E, learning to be kind to myself and not mentally bullying myself if I can’t do what I set out to on any given day. With M.E there are many things that my mind wants and can do but that my body simply can’t and that mis-match is a daily battle.

I don’t have all the answers, I still very much feel like I’m slap bang in the middle of my mental health “issues” and it’s a daily slog to keep myself balanced. Coming out of lockdown feels a hell of a lot tougher than it felt going into it, my life was already on a type of lockdown but coming out and seeing people starting to return to a certain degree of normal, that’s tough. It’s like being left behind or not included in a massive party that everyone else is enjoying. And of course, there are some wonderful elements to lockdown easing, being able to have garden visitors again is just wonderful. But, as always, for us spoonies, it’s the reintroduction of pacing. Pacing that we haven’t had to do for the past year. I always knew human interaction wore me out more than most activities; active listening, the hubbub of lots of people talking – it’s the sensory overload that does it for me. 

So now, it’s about having to think carefully about what I do within a week, if I have visitors, I need days either side to rest and I may need longer than that. Having to spend time thinking about how to balance seeing people which lifts my spirits with taking on orders, I simply can’t do it all. And then there’s going out. The anxiety I feel about that is high. Partly because I have only left the house 9 times in a year so the outside would feels quite daunting but also because going out uses up a whole different set of spoons. Getting up, dressed, out, travelling, considering if I can actually be outside because of my facial pain and the sun/wind etc. Activity time whilst I’m out, travelling back and then getting home. The idea of having a change of scenery and being elsewhere is utterly wonderful, the reality is vastly different.

They’re considerations that all greatly impact my mental health. Knowing that seeing people and going out will be a positive and lovely thing to do but equally knowing that the planning and anxiety surrounding and potential fallout from it, well, it’s exhausting. It’s a continuous circle of thoughts that I haven’t missed one bit. But, it’s another hurdle to jump and one that will be taken in slow, steady stages and that’s ok. At my own pace, in my own time, I’ll get there.

If you feel you are struggling and need to talk to someone detached, here are some organisations and numbers you can use. Please use them and please know you’re worthy of that help.

Mind: 0300 123 3393 or text 86463

The Samaritans:  116 123

CALM: 0800 58 58 58

Young Minds Parents helpline: 0808 802 55 44

Hannah x

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 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,



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.


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!


Keep safe and well,



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:

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,





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!



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,




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.


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.