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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

The blog post I never thought I’d write

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That is where it all began.

It’s who I’ve become in so many ways. Losing my hair to alopecia has formed a whole new identity for me and one that I have never truly embraced, accepted or liked. Yet, it has taught me so much about celebrating difference, taking people for who they are, not what they look like.

A week ago, I headed on my first abroad trip in three years. It was a huge step but one I was ready to take. I knew it would be fun and make memories to treasure on those days that sometimes seem unbearable. What I didn’t expect to happen…was my hair starting to grow.

When I knocked on Nik’s door last Tuesday morning, she thought I was crying because I wanted to go home. I think, along with myself, my friends and family have just succumbed to the fact that I have no hair. I stopped wishing and hoping a long time ago. As much as I’ve never loved being bald or felt comfortable or attractive or feminine, I’d made peace that it was who I was now. Even though my brows and lashes returned, I honestly didn’t think I would ever have hair again.

I have spent the last week secretly starting to get excited as each morning I have woken up and it’s still there. And not just there…GROWING. It is growing so quickly, I can’t quite believe what I touch every morning, my peach fuzz head FULL of the softest, darkest hair ON MY HEAD!

But, I’ve contained that excitement because although I’m a positive, glass half full person, I have also learnt not to get my hopes up because sometimes that disappointment is too much to bare. I didn’t tell anyone for a week apart from mum, dad, Jack & Yas…Nik is obviously taking all the credit for this and thinks we should now holiday all the time!

We captured mum’s response on video – Nik was brilliant in France and we decided not to Skype home because, who knew if it would be there the next day and that kind of news is news I wanted to tell them in person. So when we returned, I popped on a hat, chatted about our holiday and ate the bread and cheese we brought back with us and then said, very seriously, trying not to cry, “something happened while we away.” Took off the hat (at this point you couldn’t see any growth, just feel it) and got mum to feel my head – what a moment. Tears and cuddles and smiles and head stroking.

I think mum has struggled the most with my decision not to tell everyone right away – if she’d had her way it would have been shouted from the rooftops and been headline news in The Guardian! But, she understood my apprehension and nervousness but once I passed then week mark, mum said, enjoy it for what it is, tell people, live in this moment. Jack was right in saying, even if it does fall out again, at least I know now it has the capacity to grow. So, I took a deep breath and started to tell people and my goodness, I did not expect the reactions I’ve had. Don’t get me wrong, I know how my alopecia has impacted the people around me and how invested they have been in willing it to grow and for me to feel happy…but my goodness, the relief and joy on the peoples faces I hold most dearly to me – priceless.

I didn’t manage to film everyone’s reactions because technology wasn’t playing ball and some filmed but with no sound but let me tell you, I will treasure telling every single person for the rest of my life. I’ve never heard so many, “OH MY GODs” and seen so many mouths being covered followed by tears and trying to stroke or kiss my head through the screen – it’s just been truly magical.

The other aspect I’ve been apprehensive about was coming out as hairy online.  I am so aware of how I’ve felt when a fellow sufferer has posted about regrowth. Of course there is pure joy for them, but that is always tinged with a hint of sadness because mine hasn’t grown and I don’t want to rub it in their faces. This online community has been such a support for me. Alopecia UK is just an amazing charity who has been there to listen and give advice and support and I don’t want to lose that. Even though my hair is growing, I don’t know how this is going to pan out but regardless, I will always consider myself someone who lived with alopecia and will always want to raise awareness and support people who experience it.

However, equally, I started this blog to share my experiences in the hope that someone else out there didn’t feel as alone. Therefore, it’s important to tell you this part of the story too…because, even when you absolutely have zero hope left, things can happen to reignite that hope in you once again.

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I’ll keep you updated, openly and honestly with my regrowth…but for now, I’ll sign off with a slightly different name…

#hairyhannah

Grow through what you go through

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

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

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

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

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

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

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

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

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

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

#hairlesshannah

 

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Planning for new adventures

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

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

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

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

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

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

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

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

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

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

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

Have a wonderful week,

#hairlesshannah

2019

Happy New Year everyone…2019, how on earth did that happen? I really hope you all had a lovely festive period, whatever you did and whoever you were with.

I’ve been having a little chuckle to myself over the last few days, not in a mean way but because social media is covered in people’s declarations and resolutions for the year ahead and quotes about how awful the last year has been so this year can’t be any worse. It makes me laugh because I used to be like this, promising myself the best year of my life and focusing on all the bad things life had thrown my way.

But now, I am still not in a position to make big plans and I’m okay with that. Don’t confuse this with me being fine with my life and situation, I am far from it, but I have learnt that it’s wasted energy to let that be my main focus. Its twee but true – every day may not be good but there’s something good in every day, and that is what my mantra is and how I try to live my life.

I think CBT has taught me a lot but so has my illness. I’ve grown and changed as a person because I’ve had to. I say no more often now and put myself first and this in turn benefits my health. There was an article in The Guardian this week about how a woman was told by her friend, “I can’t spend time with you anymore because you are just so negative.” That resonated with me because I have always been so determined to not be the negative Nancy in the room. It doesn’t get you anywhere fast apart from being a lonely person because people will get fed up with you. I am in no way saying we can’t talk about the things that are wrong, sometimes there’s nothing better than having a good old bitch and moan to your friends but that should always be counterbalanced with a laugh and talk about something that isn’t work/illness related.

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Distraction, I’ve learnt, is sometimes the key. Distracting yourself with laughter, TV, fresh air, talking about somebody else’s life and worries means that you are both maintaining healthy relationships but helping yourself because for those moments in time, you aren’t focusing on you and your problems and strife.

It’s ten years on the 5th since I started jury service and that is event that I can pin point where my life suddenly took on a new course. It changed me in so many horrendous ways, I still live with the consequences to this day. It hasn’t been the easiest ten years, there has been so much sadness, pain and loss but there has also been so much love, laughter, experience, adventure and self discovery. I may not be where I imagined I’d be at this stage in my life, but who is? Regardless of our situations, I guarantee there is always something that somebody else has that you want. So why not just be content with what we have and share in the joy that the people bring.

The last 3 years have been and continue to be horrendous for me and I do have days/weeks where I can’t lift myself out of the fog of feeling so low and depressed about it all. But, on the whole, I can look back at the last three years and focus on everything that I HAVE done and HAVE achieved and HAVE shared in with the people I love.  IT IS NOT EASY and I am in no way preaching about how you should do things, we are all different and we all have our own stories to tell, this is just how I try to do things and on the whole, it does work for me. It’s no secret that I continue to be on antidepressants and have CBT and I am not ashamed of that, it keeps me level-headed and probably enables me to focus on the good rather than stay in those dark days that became far to frequent for me.

2019 for me is about taking things one day at a time, keeping my glass half full and surrounding myself with people and places that make me smile more than they make me frown.

I hope 2019 is kind to you.

#hairlesshannah

A little M.E update

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

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

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

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

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

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

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

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

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

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

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

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

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

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

#hairlesshannah