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

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

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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

 

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Troubled mind…

I’ve been having trouble recently, trouble with my brain. My mind. I’ve been spending a lot of time in pain, both during the day and the night where the pain is so unbearable I can’t find comfort and so I have all this time on my hands to think and ponder. Specialists have suggested as a next step that I start seeing a psychiatrist – I know, scary word – but the explanation as to why try this is actually beginning to make sense to me.

The immunologist explained it like this. People bandy around the word stress but when stress is acute it can actually cause physical effects on the body which can linger long after the actual cause of stress has gone. For example, we think we can almost 100% say now that the stress that was the catalyst for all of this was the new job in Dubai and the lack of support I received. But that was over sixteen months ago now so when doctors kept saying stress may still be a cause, I just didn’t understand. But, stress to that level will have had a physical effect on my body i.e. the asthma attack I had and the recurrence of the glandular fever. Stress can manifest itself in so many different ways and because it alters some of us physically: our state of mind will also change along with it i.e my life has never gone back to being how it was before.

However, we/doctors don’t often see the brain as a part of our body that needs treatment. It goes unnoticed until the word mental health or depression is mentioned and then there is this huge stigma attached to it. Initially when the word psychiatry was mentioned I automatically thought they thought I was bonkers. But no, it was a medical professional acknowledging that what I am going through is having a profound effect on both my physical and mental being. That there is a chance that by treating my mind, by looking at calming me internally, targeting the potential stress triggers that may be lingering, it will potentially have an impact on my physical symptoms.

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It has taken me weeks to get my head around this and I’m still not sure I trust in it totally – I want someone to help me with my pain, with this new life – I want a cure, I don’t want to be managed! But, I guess in the meantime all I can do is trust the healthcare professionals dealing with my case. This idea has sparked something in me though because although I write this no holding back blog, I do hold back. I hold a lot back actually because I STILL continue to worry about what people may think about me, what they may say behind my back. But that isn’t healthy and I know that, and that doesn’t mean I’m going to start divulging every little thing about my life that may or may not still be clinging onto my brain awaiting exorcism so I can move forward, far from it! I just mean that I should write about things I want to write about without fear of who will read it and cast opinions – we can’t all agree on everything and I am under no disillusion that my blog is exempt.

So this is a new blog post from a somewhat pain-clouded Hannah who needed to get something off her chest that has been clinging on and has been causing stress and upset for far too long now. So here we go, attempt one at looking after my mind and being true to myself!

“You’ve got too much time on your hands” was a sentence thrown at me in the early stages of falling ill. Apparently too much time to worry and over think things and therefore be way too sensitive to suggestions made by this particular person. I’ve never openly written about the demise of this friendship because I’ve been too worried about mutual friends etc. It has been suggested recently by professionals that this may possibly cause emotional stress because I’ve held onto the hurt and pain for too long without properly getting rid of it. I know that I’m too cautious of other people’s feelings to the detriment of my own.

I’m definitely not here to rip to shreds a friendship that I cherished very dearly: I suppose that I have just had more time to think about the downfall of said friendship now that enough time has passed for me to not feel so bitter and tormented about it. As I’ve thought about it more, I’ve realised that it was this friendship that has in turn caused other insecurities to creep in more recently about the strength of other relationships I have. Isn’t it funny how we can let one person colour our views and opinions of others? How comments made by one individual can sway and impact our thoughts, feelings and outlooks? To my knowledge, only one ‘friend’ has ever questioned my illness. But that is all it took. That was the start of my self-doubt because hell, if someone who I was so close to can think that all I needed was a “kick up the backside” then surely others must feel the same too? As things have got worse over the past few months and I’ve been able to do less, as people’s lives carry on and mine doesn’t, I’ve questioned whether people think I’m just dragging out this façade and are just getting fed up with me.

As I’ve said before in my blogs, I know I am far from perfect, I know I have my faults but I do self reflect a lot and if I’m wrong or cause hurt then I am happy to hold my hands up, talk things out and move forward. But, as I have also said before, my friends, my close friends – they become my extended family because, as I have found out, when the chips are down, it’s your friends as well as your family that will literally drag you forward kicking and screaming. Sometimes I think we only see the good in people because we love them and although this particular friendship is done and dusted, this is by no means reflects on the years of happy times we had.

However, the hurt I felt when this friendship unravelled was similar to the pain I felt when I split up with my ex. After all, we had a relationship, we shared our lives – ups, downs, tears, laughter, travels, weddings, babies and everything in-between and I would of course do it all again. I have spent hours thinking about what I did wrong for this friendship to have failed so miserably but you know what, all I come back to is the fact that I got sick. She didn’t believe me, she didn’t have time to support me because of her own life and in the end she tried to turn it back onto me because she didn’t have the guts to see that she was in the wrong. Now, I get that people have busy lives, ALL of my friends have jobs, most are married and some have children yet ALL of them have managed to text, ring, send post and come visit me, we have maintained our friendships as two ways streets. They made and continue to make time because a) they want to, b) they know I’d do the same for them and c) we make time for those we care about whether they are blood related or not, whether we have 23 hours of our days for the next 6 months planned out already – we simply make the time. End of. No excuses.

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I may feel like I am at my weakest at the moment, I’m currently writing some of this at 1.37am whilst in excruciating pain, but it’s these times that give me strength. Strength to know that I did nothing wrong in this specific situation, I can finally see that now and I need to get it out there in order to let it go.

But because I’ve had time to think and look back over the last sixteen months I can quite clearly see that only one person is no longer in my life and everyone else has mysteriously stuck around. So that tells me something: my friends do believe me, do trust me, do love and support me and do want to help me gain strength within this new life I find myself living. I’ve had time to read countless blogs about people living with chronic illnesses who have lost friends via similar circumstances. Why is that? Why in the time we need these friends most do they desert us? I really can’t come up with an answer and that is the bit that still hurts because I will never know. It just appears that because we suffer with a hidden illness, some people think that tough love, harsh comments and causing tears will snap us out of this situation we’ve ‘landed ourselves in.’ And you know what – shockingly, that doesn’t work because we are actually are ill. We can’t be magically cured, we need to be trusted, loved, supported and above anything else believed. Because if you think we are vying for attention believe me, there are soooo many other ways of doing it without making ourselves broke, medicated up to the eyeballs, missing out on life in general and getting depressed.

Make it your task this weekend to tell the people you love how much you cherish them, make them feel loved and make time to send a text to a friend you may not have spoken to in a while. Those little things are so much more meaningful sometimes than the bigger gestures.

Have lovely weekends.

#hairlesshannah

Unwanted visitors

So many people I know have had some, metaphorically speaking, unwanted visitors knock on their doors lately that you can’t turn away or shout at or send an e-mail to because they are part of you. Illnesses, diseases, things that you can’t slam the door on.

I am obviously purely speaking about my situation and therefore my experiences, feelings and emotions so they may not correlate with anyone else so don’t get cross if you don’t agree!

My illness is hidden so I find myself in a situation where I have days when I look better than others which seems to indicate to people that I’m getting better. I’m not. That is why it is called a hidden/invisible illness and that is why it is so frustrating. I think I become even more prone to this kind of comment because I don’t show my true feelings and emotions so therefore it is even easier for people to assume I am getting better and feeling great. I’m not.

Because my ‘complex’ case is STILL under review by many doctors and specialists, it seems like I am forever waiting for answers, fighting tirelessly to get people to fight for me! I’m 16 months into this now which I know is a long time. So much can happen in 16 months and has done to most of the people in my life – good, great, bad and bloody awful. But it also means that due to no fault of anyone, and I mean that wholeheartedly, life goes on. My life is stuck but other people’s aren’t. So therefore I have become lonelier, felt more isolated and even more desperate for healthcare professionals to take me and my life seriously and help me.

But it seems that healthcare professionals, even those at supposedly the best hospitals in the country, don’t feel or see the urgency in my eyes. I am acutely aware that what I have is not life threatening and don’t ever want to compare it to those who are living with those illnesses or are no longer with us because of them, but what I am living with is totally life changing for me. Last week I met with the first doctor in months that actually listened, took time and an interest in me and gave me hope. Only for that to be totally shattered when he phoned me Friday to tell me most of what he’d said was incorrect. The referral will take months and even then may not be accepted as it has to go through funding applications and that the help he’d promised in the interim was for those who live in Southwark only – when did I ever tell him I lived there?! So here I sit once again, being totally let down by the only people who have the power to help me.

I don’t recognise my life anymore. I described it this week by saying I feel like I have an existence, not a life. Most of the doctors and specialists fail to see me as a human. As a 30-year-old woman who has so many hopes, dreams and aspirations,  who’s existence is mainly lived out within the four walls of her bedroom. The pain I have is constant and worsening, I’m experiencing pain insomnia on levels I never knew existed. It takes an age to get up and get ready and in all honesty it’s taking all I have at the moment to even do this because really, bed is the place that comforts me most regardless of the pain.

In bed, I only have to move to change position and shift the pain locality. In bed it’s quiet, the curtains are shut and it’s dark. I can drift in and out of consciousness, cry or just contemplate and dream. If I’m up, I feel like I have to put a face on things, I manage to hide the pain because that’s easier than revealing the truth. If I’m up I can’t manage to do much which frustrates me. My hands are becoming even more painful so even typing for long periods hurts. All I really have is my blog to make me feel purposeful but creating the content for it often causes more pain than I feel the blog is worth. But then through the blog comes the communities I’ve become part of – the spoonie and chronic illness heroes and heroines that give me hope and strength are incredible.

The doctors don’t see the life that I seem to have left behind. I can’t drive, I can’t socialise, I can’t stay up late, I can’t shop or treat myself, I can’t save for holidays or beautiful bags and shoes, I can’t treat my friends and family, I can’t blare my music out and dance around my bedroom whilst getting ready for a girls night out. I can’t even drink a cider because of the tablet concoctions I take daily – it comes to something when a practically teetotaler is craving a cider! Lately, I’ve even come to wish I hadn’t experienced the life I had in Dubai because life was so good. Even though work is more than likely the trigger for this situation, socially life was amazing and the opportunities that fell into my path enriched me more as a person than I ever dreamed of, I had plans that were unfinished and unaccomplished which means I know what I’m missing and then I start to resent that.

I know there is no easy fix to this. I know there is a long road ahead and so much more uncertainty but all I can tell you is that I wish this bloody unwanted visitor would f**k off out of my circle as quickly as it arrived.

I read a quote another spoonie posted the other day and I loved it – it’s not me that’s unreliable, it’s my health.

Rant over! Be nice to people today and remember, they may be going through something that you just might not be able to see. So be kind.

Happy Saturday.

#hairlesshannah