Finding Hope, when all seems lost.

I’ve been feeling absolutely pants this week. Worse than I have for a while and it’s already been a crappy winter. Then out of the blue I get an email from my editor at themighty.com telling me another editor from babble.com wants to publish one of my articles. 

Sometimes I think the universe is trying to make sure I don’t give up when it feels I’m close to quitting.

 
So today I am grateful for hope. I’m grateful that someone, somewhere out there wants me to keep going and find the strength to keep fighting when to be honest, I just want to quit and hide in my cave until further notice.

Hope is a powerful tool. 

Hope is basically positivity-  thinking that things can and will get better, even if they might not. It would be so easy to give into the bitterness I occasionally feel. How unfair it all seems that I got stuck in this stupid body and cursed to live each day with pain that causes silent tears to spring from within, despite my best efforts to hide them. 

I caught up with a really important old friend in the last few days, and he said to me ” I let go of the bitterness early on, nothing good can come from that.” We were talking about our failed marriages at the time, but it made me think actually he’s so right, not just about the hurt and pain you feel when a relationship ends or you lose a loved one, but also the bitterness that can eat you alive when you lose a job, a friend, a house- your health . 

Negative emotions can be so damaging if we let them set down roots deep inside us.

This week has been a time of mixed emotions. I have been battling with some of the highest pain levels I’ve experienced for a while- a real peak of unpleasantness that has wiped me out and I’ll be honest, has made me want to quit. Like quit everything-not in the sense that I want to die but in the sense that I want someone else to swoop in and plonk me in  a hospital or something, where I no longer have to manage my Meds, my kids, my home, my life- I have the perfect excuse to just give up if I’m in hospital right? No one expects you to work, be a parent, make the dinner, to write, to help with maths, to fix their hair, to have the clothes washed, to set up their internet banking or be a taxi service if you are in hospital do they? 

I just wanted to be left alone. 

Of course after nearly two years waiting, this is the exact time that my ex husband decides he finally is ready to receive his belongings. The  piles of stuff I’ve lugged in and out of the house ready to go repeatedly and should have thrown in a skip a longtime ago if you ask most people. I suffer from extreme empathy, I cant bear the thought of intentionally and unnecessarily causing pain and hurt. How could I throw a lifetime of memories in the skip? Like a fool I used my last little bit of power with a wonderful friend or two, while dosed up to the eyeballs to get it done-but here we come to the positive, the hope. 

This fine balance of physical and mental health. 

What relief I felt after all this time battling to get all this stuff out of my life, but being chained to it by my conscience. I felt lighter and tears flowed freely as I found that I was released at last and could finally move on-  I could let some of the bitterness go. The rush of liberating endorphins combined with the rush of pain at lifting these endless boxes, totally floored me and I wondered if I would get up again.

Then I opened a bag shoved inside a box I was to return.

Out spilled a lifetime of memories. An entire life captured in still images literally flowed over my sore legs until I was surrounded by every person I’ve known in my life. Each friend I have laughed with. Each man I loved. Each family member I grew alongside. Every place I’ve been. My grandparents, now gone from this life. My babies, oh my babies, so small and me looking so ill and young and afraid. I selected a few hundred and began the process of digitalising and uploading them- some of the best memories of my life- sharing them with friends I’ve long lost touch with and some I see regularly but often forget just how far we go back. What a privilege and pleasure it was to give some documented history to the people that have shared my life so far.

Amongst these pictures are some I will keep, but never share. Because within them they hold so much pain and suffering- there’s one of me holding my 4/5 month old son awkwardly, my arm in a cast and looking exhausted, older than I do now and just utterly broken and beaten down. 

In this picture the woman, the mother, was holding so many secrets inside. She was dying a little every day. She was scared. She felt trapped. She was lost. She was alone. She had lied to every person that loved her and many that didn’t, to protect her baby.

She had lost all hope.

She was 21.

Me. That was me. I never ever in the moments that picture and others like it were taken, could have imagined I would be where I am now. I had lost my hope, my dignity, my pride, my whole self at the hands of a violent and abusive man and lied about it at the time to the only people that could have saved me.

Now, 18 years later, yes I have a  failed marriage, 4 children by two fathers, no paid job and my health is worse, but I have hope. I have peace. I know who I am and what I can not and will not tolerate anymore. I worked my butt off in those decades  to qualify in two professions. I was successful in both until my health deteriorated. I gained a high level of education. I travelled a little. I learnt new skills. I met new people. I read more books. I listened and learnt from those I encountered in all the spaces and places I entered. I tried to help anyone I came across that needed a part of me, in case they also felt lost and alone. I think I’ve made a positive difference, even if it’s just a smile or an ear when there is no one else around. I am still fighting to give myself a new occupation and purpose. I forged a new life from the ashes of who I used to be. 

I found hope. I found peace.

I “let go of the bitterness because nothing good can ever come of that.”

So even when the darkness tries to take you, just hold on that little bit longer, as you never know when that email from an editor, that message from a friend or that photograph reminding you how far you’ve come, might fall into your lap.

There is always hope, even when all seems lost.

Hope is you.

It’s your mind. Your truth. You. 

No one can ever take that away.

Should I stay or should I go?

I’ve been feeling pretty crappy lately. It’s winter and the short days of cold, windy rain are taking their toll on my body. I hurt. I’m sad. I’m ready for a break from the relentless pain and monotony of feeling terrible. Of course I don’t dare say that out loud. I don’t show that part of my life to many people. It’s private. It’s my struggle. It’s a battle that I let few help me with.

There are a number of reason for this. 

Firstly I am not great company when I’m struggling to deal with the higher levels of pain. I’m quiet, introverted and can barely smile or speak. For someone known for their loud, positive, chatty, bossy nature this part of me can be quite shocking and it can make people worry. I haven’t got the energy reserves on those days to explain and to reassure others, So I batten down the hatches and cut myself off for a while. I survive. I do what needs to be done for my children to remain safe and well, but that’s it. 

Secondly, I can not stand the idea of people pitying me, of course it’s tougher than most people will ever know to fight as hard as we do, but do most of us want the sad head tilt and sympathetic nod? Not really, We just want to be treated normally. By all means ask me how I am doing and if there’s anything I need help with, but talk to me about the things you’ve done or read, ask me about all the millions of other things that make me who I am. I still have thoughts, ideas, opinions and a life outside of my diagnosis.

Thirdly, when you live every day locked in battle with your body, sometimes it’s nice just to forget and to play make believe, to be just those parts of you that you can accept in that moment. For me this would include showing pictures of my kids and I in the countryside or smiling after a swim or paddle board. Maybe it’s me rambling on social media about the state of the world in various groups or debating brexit, housing, trump, war or any number of things that in that moment have zero to do with my health. I could be talking online about when I used to dance and sing, or play football. I could upload pictures that make me look healthy, happy, positive and strong.

I choose to be that person. To fight, to reflect and grow, to try my absolute damndest to stay positive as far as the world can see. Then I read the most horrifying of articles. A woman is currently being taken to court for fraud, apparently she doesn’t look sick enough. She looks too happy on social media to be disabled. She shows too much positivity in the way she presents herself online. She isn’t defined by her illlness, pain and abilities because she publically smiles and fights, so she should be punished.

I don’t think I have ever read an article that made me feel so personally vulnerable and anxious. I immediately went through my own social media, damn it I look happy! I’m outside and smiling. It appears that I’m living the full life of an ordinary woman.

I’m in deep trouble.

Should I post pictures of my boyfriend or kids putting my shoes on and off? Should I document the days of rest I have to have, to be able to smile and get outside at the weekend? From now on each time I use a mobility aid should I photograph it and publically share it? Do you want to see me each day crying or with pain etched on my face, simply to reassure you that I am indeed sick? Is this what I should do?

Or do I quit?

Do I leave the lifeline of social media instead? A place where I can be the me that is everything, the place where I can get out even when I am trapped inside. The place where I reassure my family and friends that I am ok, the children are ok and that we live a wonderful happy life despite everything that’s thrown at us. 

Social media is so many things to so many people; for me it connects me to the outside world, it makes me feel like I exist when I feel myself fading away in a blur of pain and distress. By liking people’s pictures, commenting and sharing things that interest me or I love, it reminds me who I am and what my place is in the world despite the fact I may have been stuck inside for days on end. 

It helps me live.

I know many people would probably say just don’t share, don’t comment, dont interact…. become one of those Facebook ghosts that sees everything but is never evidenced to have been there. What those people don’t understand is that they get to socially interact everyday with people at work, in the shops or at the various clubs and activities they do. I don’t always have that luxury and if I choose to become an internet ghost, I feel like I’ll be slipping back into nothingness and isolation when I’m in a bad spell. No social contact. Isolation. Loneliness. Zero occupation.

One of the biggest things that changed how I felt about my health was the internet.

I’m old enough to have only known the internet as an adult, from my mid twenties onwards: I had a decade of being sick with no external support, and it was so very, very lonely. I read and I watched, but I had no one to share my discovies with or discuss my opinions. Im lucky and have an amazing family and friends but they have their own lives, jobs, kids, they cant always be there. The reality is that when you are ill, stuck inside and can’t cope with physical company, being able to connect with another human being is priceless.

The internet becomes a lifeline.

It grounds us, it connects us and it helps us define ourselves as more than just existing. 

It helps us to live. It helps us see past our prognosis. It helps us be every other tiny thing that we are other than sick.

Should we be punished for that?

When you look but don’t see

The hardest part of dealing with chronic illness has and will always be other people. Stupid right? It’s not the pain or the sleepless nights. It’s not the constant hospital trips and treatments. It’s not the sickness and sadness that the life you thought you had, you have now lost. 

All of those things are heartbreaking and challenging, but fluctuate from day to day: dealing with the general public doesn’t go away. Ever.

Even when at my very strongest mentally, I  tiptoe carefully around new people or in public places. I’ve experienced first hand on a number of occasions just how cruel and intimidating people can be, when they feel they have the right to challenge my disability. There are of course an army of kind, considerate people that way outnumber those that are hostile, but that fear doesn’t ever quite go away.

Look at me. I’m 38, a mother of four. Of athletic build. I don’t often wear make up, do my hair or think beyond comfort when dressing. But I look normal right? Just your average middle aged woman.

It’s no wonder people look baffled when I try to explain to them what’s going on inside my body; this huge battle whereby my cells fight each other and organs become compromised in the process. 

I look normal. 

You can’t see my joints eating themselves. 

You can’t see the muscles spasms shooting down my legs and arms. 

You can’t see my kidney struggling to filter my blood. 

You can’t see my hearts third chamber cramping as it pumps life through my body.

You can’t see my brain pulsating as it struggles to cope with the swelling at the top of my spine.

You can’t see my gut attacking itself.

You can’t see my lung lining puffed up and squished against my rib cage.

You can’t see any of it, but it’s there.

Like day and night, while my smile beams, the pain and darkness are hidden, but never stop existing.

For every event I attend, there is a plethora of extra drugs and pain; normal life that’s so finely balance becomes impossible in the days after. I will come to your wedding and party with the best of them ( who doesn’t love a good wedding) but unlike most of the guests, I won’t be able to walk without pain for days after. I’ll need help to get undressed at the end of the night and for the next few mornings. I won’t be able to do the washing or washing up for the next week. Getting in and out of the car will leave me in tears. We will eat food that the children can cook themselves.

That’s what you don’t see that. That’s the bit that all but those that live with chronic illness will never see.

The payoff.

The tough bit.

It’s because we keep this part of our lives predominantly private and personal that people find it so hard to accept and understand the reality of living this way. It’s why when I get out of the car on a good day, walk normally into a shop or go to the beach for a walk, I feel ashamed. I feel a fraud. I feel judged. 

I live my life expecting that letter telling me that I’m not sick enough, that I don’t look ill enough to get the support that I do. 

The bad bits, the pain, the struggles, all that stuff goes on privately. When you are really sick do you leave the house? When you are in pain and Ill, do you plaster that all over your Facebook page? Do you update your social media with every symptom and bad thing you feel, post only pictures of you crying and hurting? 

Of course you don’t. Most people don’t. They project positivity, show only the good bits and that’s better right?

I made a choice some time ago, to live with joy in my heart. To no longer feel ashamed and hide away. To begin to live to my fullest potential. To treasure the positive, incredible things that I do have. To push myself as far as I could and to achieve as much as possible. 

I choose to fight for my life. To live.

That is, by far, the hardest battle.

 A letter to children with rheumatoid arthritis 

Hey you. I see you, with your cheeky smile and wise eyes. First things first I want you know that everything is going to be ok. You will need to be brave a lot and learn to be strong, but you will be ok.

I expect lots of things are changing right now, you are up and down to the hospital lots and miss school. You probably have to take lots of medicines that make you feel sick and tired and have nurses poking you with their sharp scratchy sticks. You think about your friends and all the fun you think they are having and probably wish it would all just go away and things could just be normal again. They will be. You are just going to have to find a new normal my angel.

I was once your age you know. I was that sick child, like you, the one who was always ill. I spent lots of time staying in hospital without my mum as I got older and it was pretty scary. I could see that it upset my mum lots to have to leave me there so I tried my best to be brave. I made friends with the other sick children and talked to the nurses when I was sad. They were always very lovely and kind to me. 

I found that after a while I could smile even when I had to stay in the hospital for lots of sleeps. I went to school in the hospital and that was annoying, you would think we could at least get out of school! It was good though, it gave me a chance to talk to other children and think about something else other than being afraid and poorly. I spent a lot of time in hospital when I was a child, reading and studying saved me. It made me feel normal.

I had visitors and that was good, the nurses still nagged me to rest and poked me with their sticks and I had to go in funny noisy machines a lot so they could look inside me, but I always had a book to escape into. I decided very quickly that just because I couldn’t walk and do the things I could do before, I could still do something. So I wrote stories, drew pictures and read endless books. 

I was a kid way before computers, can you imagine that! So I made friends at my real school with people that understood my worries and that I couldn’t always join in, so we made new adventures that I could do. My mum was very brave and when I got old enough, she would let my friends go out with me on my crutches or in my wheelchair to the shops or park. It felt good to do normal things. Sometimes I joined in with their games or football or their dance routines even though it hurt. I would get told off, but it was worth it.

I know that right now it feels impossible that you will ever be brave enough or grow up to be old like me, but you will. You will find a way to be strong enough if you let the people that love you help. Tell them your worries and ask if there’s a way you can still join in even though you are sick. I remember my mum sneaking me out of hospital one night to go to a show, she did get the doctors permission but it felt really naughty creeping out and going on my crutches to do something I’d looked forward to, then sneaking back into my bed where the other kids had waited up to hear all about it. 

There will be days when you just want to curl up and shut the world out, that’s fine too. Remember though that tomorrow is a new day with new possibilities and new adventures to be found. Try very hard not to worry about what the other kids think. I will let you into a secret, when they look at you in your chair or walking funny, they are thinking how brave you are, even the ones that can be unkind. They are just frightened as they know they aren’t as brave as you, brave enough to keep trying to go to school, brave enough to make new friends, brave enough to keep smiling. You are wonderfully,  beautifully brave, remember that.

I am now a grown up with four children myself! I studied hard and became a teacher and even when I was too sick to do that anymore I found something else. Now I write stories to try and help people like you and me, I also sing even though I cannot longer dance and I swim as I can no longer run. You’ve just gotta find that thing that makes you smile and say ‘but I can do this’.

You to will grow up one day and will be one of the most amazing people, I promise. You just need to let the people that love you very much, help you and take care of you until you get there- even then they will still be there when you need them. Here’s the thing that makes you very, very special: You will understand how it feels to be scared, lost and hurt. Because of that, you will be the kindest, bravest, strongest, most incredible grown up and that’s a rare and beautiful thing to be.

Be brave my lovely one,  now let me see that beautiful smile,

With love

K xxxx

When ‘fatigue’ isn’t enough to explain how you feel

Aside from the constant pain and guilt, living with chronic illness is mostly like swimming through treacle. Or walking with lead boots constantly welded to your feet. It’s near on impossible to describe what this kind of fatigue feels like. In fact fatigue is almost too mellow a word, it in no way describes the overwhelming and constant feeling of utter exhaustion.

I recently had an operation to remove my Fallopian tubes. With all the diagnosis I have, risking more babies is not an option and contraception messing with my hormones leaves me with even more hemiplegic and ocular migraines than I would have anyway. 

My body struggles to normalise everything; cells, blood, temperature, hormones, all those things a normal body does without trying, my body gets confused by. A simple way to demonstrate this is my temperature, it will fluctuate with an hour between raging highs and dropping perilously low, as my body attempts to find it’s normal. Or if I kneel down, my body panics and thinks it’s under attack; within minutes I’m covered in bruises as it sends in the Calvary.

So I had to have this operation, even knowing that it would be a tough recovery.

The procedure was an absolute success, swift and text book with the added bonus that the biopsy of my innards came back clear. I had been warned that the aftermath would be much harder than for a healthy woman and it was. I was bed bound for two weeks and could barely sit up or engage with anyone. Then my joints started to seize up. Then my muscles started to spasm. The pain made silent tears run down my cheeks as the spasms in my legs forced my body to curl, aggravating my abdominal wounds. I started trying to do my physiotherapy and move my body, but then the fatigue hit.

I had to get moving again, the children needed me and my partner needed to go back to work after nursing me and caring for the children for longer than I would have liked. So I started with some trepidation, to engage in real life once more. 

Six weeks on, I still don’t feel ready despite having returned to my own kind of normal. It’s the exhaustion that’s beating me. My body has decided to get into such a pickle, anything I do is too much. I sit currently in a house with piles of washing, dishes, toys and endless jobs to do but I can barely lift my arms to type this. I hate it, literally hate it.

Climbing the stairs feels like climbing a small mountain.

Standing to washing up, I feel like I’m sinking through the floor into thick oozy mud.

My fingers are on fire and curling up each time I stop typing, rebelling against the movements I’m forcing upon them.

Getting up from the chair makes my muscles burn and my head spin as if I have run a marathon.

Walking involves huge concentration and determination to lift one leaden foot after another off the ground.

Shaking the brain fog from my mind to compose this sentence has taken days.

This is not just being tired.

When I am well I exercise as much as I can, I also have four children so know all too well what the exhaustion of young babies and children feels like, but this, this is another level.

Imagine you’ve just run ten marathons back to back, sleeping for tiny pockets in between. You’ve fallen over a number of times and twisted ankles, bruised knees and scrapped hands. You then celebrate the completion of your goal by staying up for two days straight, drinking the bar dry. After that you jump straight back to the reality of looking after four children and running a home.

That’s what it feels like every day, the ‘fatigue’.

But you can’t say “I just ran ten marathons”. You can’t say “I pulled a double all nighter”.

There is no good excuse, no logical reason to give, that is tangible enough to understand why your body feels like this. For yourself, let alone to family, friends or the army of irate ignorant people that lurk around far too many corners.

 It just is.

So to all the other warriors out there, I see you. I understand. I know, without words, how you feel. 

But please, don’t give up fighting. Don’t give into the darkness of defeat. Rest. Practise Self care; read, talk, eat, sleep.

Then drag yourself up and try again tomorrow and the next day and the next, until one day the fog will lift enough for you to smile again. It doesn’t matter how many tomorrows it takes; you are not a failure, you are not weak, you are not lazy and I promise you, you are never ever alone in this. You have me, as well as a cyber army of other warriors that will always, always understand.




Love must Trump hate.

Like the rest of the world, i awoke to despair and confusion. How did we get from Obama to Trump as leader of the free world?

I pondered awhile as to how this happened, but found that unlike with brexit, I wasn’t shocked or surprised. 

We all saw this coming. 

The thing that i have realised is that actually, we all have a lot in common. Thats right, im saying I, the bleeding heart liberal have a lot in common with the trump voter.

What has really happened in the last six months, is that the antiestablishment movement has taken off big style, just not in the way that I and many other like me, had hoped. People are voting against politics, against what they see as a corrupt and defunct system for something they hope is simpler and better; an old school ‘everyman’ representative. 

Except neither Trump, Farage or Boris are in fact everyman, are they?

We all, brexiters, remainers, democrats and republicans alike are shouting from the rooftops ‘something has to change’. What baffles me is how easily democracy can be manipulated, how powerful the media and spin doctors really are. Like with the UK, the US population has been sold an ideal; better schools, healthcare, more jobs, tighter immigration, more rights for every citizen. 

A politician that will make their country great again. 

The problem is that these ideals are just that; idealistic. Unrealistic without fundamental change in how politics works.; the financing, the way the population is represented in government. This, again like brexit, was a very close call yet almost half of the voting population, lose their voice and input; Half the voting population. They will likely be branded sore losers if they dont accept and get on with whatever Trump decides to do to their country next. Hatred will be incited and encouraged by the press; let’s face it while the population are fighting amongst themselves and are distracted, a government can get on and do what they like.

While listening to Trumps victory speech me and the children debated the future. It cant be denied that if the plan he has sold, again like Boris and Farage, could actually happen, and promises could be kept, then maybe, just maybe things may get better. Fairer. kinder. Safer. More secure.

My ten year old pointed out that what he said in his speech, seemed like a good idea, and yes, yes it does if you ignore the overwhelming evidence to the contrary. If you ignore the impact of this vote on the most vulnerable, undoing 8 years of fighting for obamacare, tighter gun control, more action on climate change, less war, less poverty and more equal rights. Like in Britain we had finally begun to gain ground, in terms of equality for minorities whether that be ethnic, gender, ability or sexuality based. It feels like we’ve just voted to jump back a couple of decades.

Im not saying the alternative was perfect. Clinton seemed to the casual observer to be the better of two bad choices, and for what its worth, had Michelle Obama been able to run, i think the outcome would have been very different this morning. The democrats chose badly. There wasjust too much history for some voters to disregard, when it came to clinton.

So what next? 

Its likely we will see similar ripple effects across european elections as they crop up, with the far right political message of ‘making our country great again’ and ‘taking our country back’ becomes normalised by the results in the UK and US. 

Its almost funny that Americans were laughing their heads off at us on june 24th, then have gone and literally Trumped our own stupidity.

So what do we do now? 

Well we fight, thats what. Once again we put aside our differences once the dust settles. We find the common ground with those opposing our own ideals and we work together to make our countries work better for us. We try together to make our governments keep their promises and dont stop until they do, or the system changes. The Trumpers as with the Brexiters have to stand alongside their opposing numbers as ultimately what all of us agree on is this:’something has got to change’. Your idea of how we get that to happen may be different to mine and thats okay with me, but we must stand together. 

Very few of us can effect any real change nationally or globally, but what we can do is this: Practise tolerance and kindness. Look after our planet ourselves if our governments wont; recycle, reuse, pick up litter, protect our own local green spaces and wildlife. Share information and ideas. Join local groups that are working to effect the changes you want to see in your communities whether that be support groups, beach cleans, healthcare volunteering, fundraising for better local facilities. Do your bit. Educate your own children in these matters in a kind and compassionate way. Teach them about democracy. 

I learnt from brexit that my response of fear and despair scared my children. This morning i told them messages of hope and explained that what the other half of the population believe is just as valid, just different to what I believe. Their way of getting to the end goal of security and peace for their own families if just different to mine. As with those that voted leave in the UK, only a very small minority of Trump voters are truly bigoted, fascist, racist indivuals; if you voted Trump and you are in the majority that aren’t those things, make sure your voice is heard. 

In the Uk, we still stand divided post brexit and if there is one piece of advice I would give to my American brothers and sisters its this; learn from us, dont let this vote divide you from other good people that just think a little differently to you, find the common ground and the things you agree on. Fight for those things alongside one another. Have your moment to despair and be angry, but pick yourselves up and get on with doing what you can in a positive way to effect the changes you want to see. 

Work together. 

Be that change.

May the force be with you America.

Inside the mind of someone chronically ill at night

I’m lonely. I’m going to die too soon. I must write a will. I hope I don’t give my children my illness. I’m a terrible mother and a failure. How am I going to get everyone to school tomorrow? I hurt. I wish I didn’t hurt. Damn it I forgot to put the washing on.

For too many nights of my life for the last couple of decades I’ve been an insomniac. Pain keeps me awake, but my active brain does a pretty good job of that too.

It’s dark, it’s lonely and I feel like there is no one in the world awake, even though logically this makes no sense. My mind plays tricks on me. I’m so very tired all the time but I just can’t switch off and let go. I have been through short phases of taking sleeping tablets but even then I awake feeling groggy and like I’ve not slept for years.

The night brings out the anxiety in me; in the light of the day I can rationalise, but the darkness brings with it a gloom that is tough to shake. I worry. A lot. I don’t consciously think of anything, my mind just wanders from subject to subject always flitting about but generally ending up somewhere that I then consciously interupt. Loss, sorrow, the future.

I read. A lot.

Like many people that suffer with chronic illness or any other condition that keeps them awake at night, I find that occupying my mind with fiction is better than the reality of laying there in the darkness, feeling every pain in my body and listening to my wandering thoughts. Instead I fill my mind with the words of others, following a journey that someone else has written. It’s escapism pure and simple. Mostly it works, although sometimes, I admit, I find myself staring at the page, mind drifting to my last specialist appointment, my next challenge, my children and my life expectancy.

I try to survive another dark night. I’m scared to go to bed, frightened of the battle with my body and brain. I don’t want to lie awake all night yet again.

I lay there wondering what I did to deserve this. I’m a good person, I’m kind and compassionate. I have made mistakes like everyone, but this? What did I do to deserve this? I wonder about karma and the many gods I read about. Why am I being punished? Why me? 

I just want to lie without pain, and sleep without repeating the same battle with my body, mind and spirit each night. I do everything right, have tried every suggestion anyone has ever thrown at me, but none of it works. I just can’t sleep and the longer the battle rages, the darker the corners of my mind I find myself in,trying to escape.
The constant exhaustion that comes with being sick all the time is impossible to describe to anyone that hasn’t felt it themselves. It’s like the worst hangover you’ve ever had, after completing a marathon, while become the parent of a newborn for the first time. 

It’s beyond tiredness. 

Beyond having flu for a couple of weeks. 

It’s relentless. 

There is no end and the beginning was so many moons ago, it’s impossible to remember a time that you didn’t feel like this.

The fight with the dark feels impossible to win, night after night, battling to switch my brain off, trying so very hard to find that happy positive part I know is there, but has been lost as the sun sets.

Am I going to get worse? Will my heart stop beating? Will I slip away while I sleep? What will happen to my children? How can I save myself? What can I do to fix this?
I long for the rise of the sun, it’s warmth not only healing the world but my tired aching body and brain. I begin to relax as the birds begin their day; I hear hope arriving once more with the daylight. My body finally gives up and my mind clears enough for sleep to find me for a few short hours.

I awake shortly after, groggy and heavy, my limbs weighed down and stiff as I fight to stand, smile and smash another day.

I’m alive.

I smile.

My day begins with the usual mayhem four children bring; noise, mess and madness. I remember why I don’t ever quit, why the darkness will never be strong enough to absorb me. It’s incredible the distraction from pain and your own irrational worries that children can bring.

I smile, again.

I’m alive.

I’m fighting.

I’m living.

The darkness may be strong, but I am stronger.