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

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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An open letter to my GP

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

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

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

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

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

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

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

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

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

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

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

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

Yours sincerely,

Hannah

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What would you do if you were cured tomorrow?

Recently I replied to a tweet from @TomKindlon who posed the question: “What would you do if you were cured tomorrow?”

I answered quite quickly with the things that immediately sprung to mind, but I must admit, that question lingered with me and the more I’ve thought about it, the more things I’ve added to that list. It’s a hard one to contemplate because in reality, I am not going to wake up tomorrow cured. I am still ill, it is still on going, there is still no cure and the road ahead is still a long, frustrating, upsetting one. However, as with a good book or film, escapism from reality can be a release and I found it nice to dream for a while. So I thought I’d share with you my imagined “day in the life” if I woke up cured. (I’m also assuming that covers alopecia too and I’d have glorious locks again!)

I’d wake up in my own house/flat that I own because I can work full time again. I have a long shower where I’d use a hot oil treatment in my hair and luxuriate in shampoos and conditioners and revel in the fact I wouldn’t need a rest after my shower or at any point in my day until the evening! I’d style my hair, carefully apply make up, look at myself in the mirror and think, yes, today is a good day! I’d be able to choose a decent outfit because I would no longer be on tablets that caused weight gain and I’d be able to exercise because I don’t have pain or fatigue anymore to hold me back.

I’d then complete normal jobs around the house before jumping in my car, cranking up the radio and driving to meet friends for lunch…somewhere busy and social and with a beer garden so we can sit in the sun (Yes, I’m imagining Summer!) because I’m not longer sensitive to weather and I will tan and not burn!

I would then go to a travel agents and book a looooong, exciting holiday to places I can explore, meet new people and make memories. I won’t be worrying about money or being frivolous because I now cherish life, it’s not a rehearsal so work hard play hard has much more meaning. Following this I pop to the book shop to buy a real book because I can read again and I go home to sit in the sun, with a Kopperburg cider and read my book…it’s bliss.

As I sit in the garden, I don’t feel fatigued, I’m not worried about the brightness or the words blurring on the page. I don’t have to think about pacing or consider the guilt I feel for things I can’t do or contribute to because I am now able to contribute to society again. I can teach but also know that I don’t live to work. My health, family and friends are my priority and I will never again let work rule the roost. I reflect on how lucky I am to be surrounded by the people I have in my life, how they never gave up on me and how I know they never will.

I then go upstairs to have a bath because I recognise the importance of self care and quiet time. But also because I know that tonight I am hosting a party where everyone is coming round to eat, drink, play games and have a good time. Everything is organised and I’m not even thinking about the tidy up because I can manage it! I am grateful to be well, to be able to function as a normal human being and live a normal life doing all the things I love to do and after a brilliant music filled evening of taking silly photographs and laughing so hard your sides hurt, I climb into bed feeling exhausted. But good exhausted. Exhaustion that will be alleviated by the sleep I’m going to get.  It won’t take me hours to get to sleep and I won’t wake up a gazillion times because of pain, I will dream and wake up to another day.

One day….

#hairlesshannah

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Health Update Time

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

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

 

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

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

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

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

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

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

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

puppy

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

Happy Thursday.

#hairlesshannah