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

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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

Self Isolation

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

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

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

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

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

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

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

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

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

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

Be kind. We all need kindness right now.

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

#hairyhannah

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Dear body,

Dear body,

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

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

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

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

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

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

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

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

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

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

Yours Sincerely,

#hairyhannah

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Carers

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

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

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

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

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

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

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

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

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

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

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

Where would I be without you? Happy carers week.

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#hairyhannah

Grow through what you go through

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

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

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

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

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

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

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

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

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

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

#hairlesshannah

 

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Planning for new adventures

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

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

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

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

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

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

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

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

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

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

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

Have a wonderful week,

#hairlesshannah

A little M.E update

It’s been quite a while since I sat down to write a blog post yet here I am again, using writing as my therapy of choice.

I guess I felt compelled to write today after spending several hours yesterday with mum and dad at an Action For M.E conference. We went along hoping to find out more about what research is being done, to network and to get some useful, practical advice. I think all three of us would say we’re glad we went although it wasn’t easy.

I’ve been struggling recently with my illness, I suppose because I’ve been ill for so long now, people almost forget that I am ill. Let me expand on that a little. A lot of this is my problem, my insecurities, but I have started to feel like I need to justify things that I do. I am wary that I feel like some people are judging me for STILL not working yet being able to do other things. I guess one thing has never changed, people don’t see what goes on behind the scenes. The careful planning that goes into pacing myself, the constant pain and sensitivities. The fatigue. The constant, wading through treacle, un-refreshing sleep, fatigue. Yes I smile and yes I can now wear make up but NO that does not equal me getting better. I am not. Yes, I am starting to do much more than I could before but that is simply down to the fact that I can manage my symptoms, most of the time. If I didn’t do this, I would not be able to do anything.

For example, I have had to cancel the few lovely things I had in my diary for the next few days to simply rest and sleep. Not go outside, not communicate with anyone, just recharge my batteries by doing the least stimulating things I can in order to re-charge. My body also likes to show me in other ways that it needs to rest, my symptoms get worse but also for me, I get skin flare ups – my right eyelid is red raw and painful with eczema underneath. I don’t always talk about these periods of time, because I usually plan in one or two days like this anyway to avoid major flare ups – but people don’t see or hear about those.

So, going along yesterday to hear people talking about something that myself and my family live with on a daily basis was, in many ways, a comfort. Truly heartbreaking to hear of people telling their stories of how their GP’s treated them like mine have me but comforting to know that I am not the only one. Frustrating to hear that the benefits system is failing so many who are in desperate need but comforting to know our battle isn’t a lone case. Encouraging to hear that the charities medium and long-term plans are to get the World Health Organisation to sit up, take note and help us by funding more research but devastating to know that short-term, all we can do is try to persuade our GPs to simply take the time to understand what living with M.E is like.

But amongst all of that, we met Alice Kelp. We didn’t make it up to the conference in time to hear her whole talk because, well, I couldn’t get up to London that early. But, we caught the end of her talk and it was inspiring. Alice is now 24 but cannot remember the year of her life from age 14-15 when she was almost comatosed, bed bound with M.E. I must admit, because we only caught the end of her speech where she was talking about what she does now and how she is proud of having M.E, I did think, god, this is not for me, plus – HOW did you go from being that bad to being able to talk about your life now?

But, I sat with Alice and her mum whilst we had some lunch and it all became clear. She was nervous to share her story, she didn’t want people to assume her story was only one of positivity because it isn’t. There was no lightning bolt occasion that she could pin down to explain how or when she began to feel better, her body just gradually got stronger. It’s like the M.E just burnt itself out. She had to go down a year at school and fight hard to get her teachers and friends to believe that she wasn’t just attention seeking. She lost 4 stone in weight and became anorexic because she became intolerant to different foods and felt nauseous. She had to learn to walk again because she lost all the muscle tone in her legs. Her mum had to give up work and be her full-time carer and be by her side because, for a while, she was suicidal. This is what M.E can be like. But, luckily for Alice, she found a pediatrician who listened and wanted to learn and research and help and gave her that lifeline that she needed. He believed in her and believed she deserved his time and help.

Like me, she’d tried everything; acupuncture, reflexology, saw a chiropractor, various herbal remedies, pacing, CBT. But, ultimately, none of that worked to cure her. She has never been cured, she is not better. Yes, she now has a job and she has recently moved in to her own property but she has to live carefully. She paces everything she does carefully, she knows she needs 9-10 hours sleep a night otherwise she can’t work, she knows she has to pick and choose what social events she attends and has to plan in rest. She is protective of her illness but isn’t ashamed of it and certainly won’t apologise for it. She gave me hope. Hope that one day I will be able to achieve the things that she has – work, home, travel.

It was also refreshing to hear her stance on CBT. Like me, she doesn’t want it removed from the NICE guidelines. The wording needs to be changed yes, because it is NOT a cure, it is a management tool to help you deal with how M.E impacts your life. Of course, it all depends on the therapist you get and how much they understand M.E but if we removed CBT from the NICE guidelines, what is going to replace it? At the moment, nothing. So, GPs wouldn’t have to refer us or give any further help because the  guidelines wouldn’t force them to. At no point have I ever claimed that CBT is making me better or curing me and nor has my therapist. What is has done is help me deal with the depression that has come as a result of living with M.E and the changes it’s had on my life and my families. It’s taught me how to change my thought patterns to encourage me to try to find the positives and it’s helped me pace myself properly in order to get that joy back in my life.

Alice works for Notts County Football Club who employed her knowing about her M.E and help her work alongside having a chronic illness. So much so, that they helped her produce a one minute film with the team to explain to people what M.E is because in September, the players wore shirts with ‘Action for M.E’ on the front.

So, what I am asking, is that you take a minute to watch that video – go to YouTube and search ‘Notts County action for M.E’ and then perhaps help out with  Christmas appeal. One of the facts you’ll hear is that since 2012, the government has invested only £2 per year per patient into M.E research, that’s less that a match day programme. That fact in itself feels like a punch to the stomach – for me, that means that since I’ve been ill, only £6 has been spent on research to help find a cure.

So, from noon on Tuesday 27th November until noon on Tuesday 4th December, any donations made to Action for M.E will be doubled. As a family, we would far more appreciate a tiny donation to this than a Christmas card this year because it will help so many people living with M.E to get the research that we so desperately need.

You can donate now at: http://www.actionforme.org.uk/BigGive2018

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M.E is a hidden, life changing illness that impacts not only the person with the illness but those they are closest to. Like so many hidden illnesses, remember that just because someone shows up, smiles and looks ‘well,’ that can be disguising what’s going on underneath.

#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

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Afflicted

According to the dictionary, the definition of an enabler is:

a person or thing that makes something possible. A person who encourages or enables negative or self-destructive behaviour in another.

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Some of you may or may not have heard about or seen the new Netflix series, Afflicted. It is a series that follows seven people living with chronic illnesses or as they put it, afflictions.  Before I watched, I had already seen many people tweeting and blogging about the series, it seemed that the chronic illness community were not happy at all. So, like with all of these things, I felt I needed to watch before passing judgement or comment.

I managed to watch one episode and decided not to watch any more. I flicked through the second and third episodes but found it upsetting and stressful. As with any of these series, the film makers had clearly got their angle and that was all they wanted to follow. It appeared that they wanted to portray these people as mentally ill. Without directly poking fun at them, that’s how it came across..dismissing autoimmune, neurological illness and just simply labelling these people as crazy.

For me, it was damaging. There is enough disbelief out there about these curious illness that people, including doctors, don’t believe in and this series was adding fuel to the fire. They focussed a lot on what homeopathic treatments the subjects had turned to, making them look hippy and alternative.

They failed to say that they were under specialists and had tried anything and everything to try to find help and a cure. They missed the point that these people were turning to alternative therapies because no one out there is putting money into science to find cures and treatments and even causes for these illnesses. They failed to emphasise the point that these people, like all chronic illness sufferers are desperate. They will try anything to see if it has an impact, no matter how small on their symptoms. It’s interesting to read able-bodied, ignorant people writing about this.

The programme touched on the point that some of the subjects were turning down expensive treatments that were lacking in foundation or evidence. Again, failing to tell people the actual cost and not pointing out – how would these people afford them? So, as so perfectly put by @gnomesChainey on Twitter: “Able-bodied people: They’re turning down expensive treatments! Don’t they want to get well? Also able-bodied people: Why would they pay so much money for unproven treatments? It’e like they don’t care about science at all!”

The emphasis was about the mental side of the illnesses. Why aren’t these people on anti depressants? Well, most of them were. That doesn’t make them crazy. That doesn’t ,mean the illness is in their heads. It means that the illness has affected them so badly that it’s impacting on their mental health too. If you were trapped in your body or your bedroom, if you were being told by medical professionals there’s nothing more that can be done for you, you too would probably suffer and need some help and anti depressants are an option.

There was a line in the series that hit me like a truck: “You can be deluded that you are sick. You can believe that you’re sick when in fact you’re not sick.”

And then, people who know nothing about chronic illness, have started being keyboard warriors and accusing the carers of these people of being enablers. They’ve watched the programme and seen parents, husbands, wives and friends caring for these people and decided that they aren’t caring for these people, they are enabling them. Not helping them get better, enabling them to continue to think they’re ill when they’re not.

Wow.

Now, I know first hand what this is like. Early on in my illness I had someone feel like they had the authority to email my mum and tell her that both she and my dad were not giving me the help I needed. That they needed to give me a kick up the backside and encourage me to get on with things. They weren’t helping me get better. If I hadn’t experienced this, I wouldn’t have believed it. How do people have the audacity to pass judgement? To have the guts to tell people what they are and aren’t doing the right by their child!

People forget that when you live with a ling term illness, we get good at lying. We get good at covering our pain. My pain threshold is pretty high now, I can mask the constant pain and I can act like I’ve got energy when it feels like I’m wading through treacle. My parents are not enablers. Believe me, if you knew my parents you’d know that they would be the first people to “give me a kick up the backside” if they thought I was being lazy.

My parents are quite the opposite. They enable me. Without them, I wouldn’t be where I am now. They support  and push me in the kindest, gentlest ways. They get me to appointments, they see me when I’m struggling and need help, they lend me an arm to hold onto when walking hurts, they give me their shoulder when I need to cry.

I would also like to point out that the majority of chronic illness sufferers that I know, including myself, are our own enablers. We do not want to be ill. We do not want to be relying on others financially, emotionally and physically. We don’t want to be on benefits and out of work. We don’t want to avoid social events, holidays, alcohol, sunshine, work etc etc etc. We are so tuned into our bodies that we notice the slightest change be that an improvements or new ailment.

At times, my parents will tell me to stop. That doesn’t make them enablers. They live with me, they see me at my best, my worst and my ugliest. So they know that I try, every single day to achieve things. But also can see me wilting when I’ve done too much and know what the fall out could be, so, to stop that happening, they will sat, do you think you’ve done enough for today? Maybe you should go and have a lay down? Why don’t you sit down and do a bit more later? This is not enabling behaviour, it’s love and support at the highest degree.

My parents at retirement age had not planned for their 30 something daughter to be living back at home, to be caring for her, supporting her financially. That was not in their plan. So therefore, I highly doubt they would enable to me continue to be like this forever…think about it, it’s just the most ridiculous thing I’ve ever heard. No one would want to live my life or live the life my parents have at the moment. And I’m not saying they would change it because they wouldn’t have it any other way than being there for me in my time of need, but we only manage to deal with it because we live in hope that one day we can go back onto the right paths and live are normal lives again.

I guess what I’m trying to get across here is linked to a lesson I always do on the first day of the school year with my children in class. I get them to squirt out a whole tube of toothpaste and then try to get every last morsel back in using a toothpick. Obviously it can’t be done but they have great fun trying. And then I tell them, the toothpaste is the words we speak. Once those words come out of our mouths it’s impossible to take them back. They can cause unknown hurt and damage to people.

Afflicted is out there now. People living with chronic illness, especially the people featured, have had untold damage done to them. They are experiencing trolling and cruel words from people who have zero clue. One participant tweeted: “ We hoped that with it might come investment in research to find biomarkers and better treatments. We never fathomed that we were participating in a project that would instead expose us and our communities to further ridicule and disbelief.”

It’s also given people who have no understanding, a programme to watch for entertainment and laugh and jibe and make fun of people who actually need love and understanding.

The wonderful Jennifer Brea who spent five years making the film Unrest about her life living with M.E. has been fighting our corner on Twitter since Afflicted came out. She is a hero in my eyes. In response to a tweet someone put out about enabling people with chronic illness, Jennifer replied: “ Many people with severe chronic illness, if not “enabled/supported” by loved ones, would simply become homeless or commit suicide.”

And I’ll leave it there. She says it all in that one tweet.

#hairlesshannah