Category Archives: Bag of Tricks

Recovery is Recovery, is Recovery

Sometimes when I cannot sleep at night, I imagine going back to talk to myself at different moments of my life.  Going back to teenage me, taking that first drink out of her hands before it touches her lips, telling her she must never touch that stuff, no matter what. Picturing what life would have been like if I’d listened.

Or the me that lay dying on my bathroom floor, terrified, alone, utterly confused by how life can change so quickly. Telling her it will be fine, not yet, but soon. Just to hang on.

Skipping past the bed bound me, the wheelchair me even, Going straight to the shell of a person that was trying so desperately to navigate a world she had been isolated from for so many years. Telling her one day she would be able to walk without concentrating on every step, That she would be able to stand tall, look someone in the eye, laugh even, hold a conversation again. Make friends, love, and be loved. That it was all on its way.

I’ve had so many recoveries. It’s been my life so it always felt normal to me, but I know it’s not. I’m 32.  I’ve started over and over and over again. Every time from nothing. Scratch. Square one.

I recovered from alcoholism when I was able to stop drinking. Finally. I recovered from being disabled when I was able to maintain walking again. Consistently. I recovered from the years of isolation when I was able to live back in the world again. Joyfully.

So many recoveries. All totally different. Addiction is nothing like being disabled. Truly, it’s not. I only know that because I’ve done both. Physical bodily recovery is nothing like putting together the shattered remnants of your confidence, in yourself and those around you mentally. Not even a bit similar. Yet all three felt the same in their conclusion. Finished, Done. Over. Leaving nothing behind but total elation as a reminder they had ever happened at all.

My life could never have been the satisfying, exciting, ecstatic experience it is for me now everyday, had I not experienced recovery-full, lasting, permanent recovery from all three. Three totally different scenarios. None of which there is ever supposed to be lasting recovery from. Not one.

Daily I am told to expect relapse from any and all of the above. Daily there is someone who informs me that it cannot last forever. Daily I know the truth of it.

That I’ll always be fine.

Recovery is Recovery, is Recovery.

It’s all the same, maintaining sobriety, staying physically recovered. Feeling emotionally invulnerable to relapse in any form. And when its achieved, suddenly the past just becomes a massive springboard to catapult us from a life we were existing through, to a life that defies description in it’s wonder and beauty.

Sometimes when I cannot sleep at night, I imagine going back to talk to myself at different moments of my life. But I can’t. So instead I tell myself my truth, Even when it’s hard to speak my heart and do justice to the blessings I feel every single moment of every day. I feel my truth.

Recovery is Recovery, is Recovery.

It is all the same at the end.

It is all achievable. So really the sooner we take the labels off what it is we are recovering from. The faster we all come together and just Be The Recovery as a unit. The quicker we will all get there. Get happier. Get stronger. Get our lives back.  Stop trying to achieve in splinter groups or in isolation what we could all be doing in public, together. Because all recovery is the same. Maintaining the recovery is identical. And there’s no way I would ever have figured that out, had I not spent so much of my life doing it. Over and over and over again.

I tell myself this. Then I wait for the sun to come up and show me the miracles the next day will bring…

Advertisements

Why I’ll always love Lance

Lance Armstrong lied. A lot. To everyone. His own Mam, His children. The public. His employers. For years. Thousands upon thousands of untruths.

I don’t care.

And I don’t mean I am uninterested. I’m not. Far from it. I mean that I don’t care. Not because I encourage massive amounts of deceit as part of a healthy-balanced lifestyle. But because the man is my hero. Always will be.

I remember reading “It’s not about the Bike” when I was first able to use my hands , lift my head off my chin and sit slightly upright. I don’t have words to tell you what it felt like. To feel the power and determination leaping off the page. To be that mentally and physically worn down and desperate-and to feel like he was talking right at me. To then be able to see this man, on this bike. Alive, well, thriving. Hope and health personified. Words don’t do it justice. It certainly got me through some horrendous moments. The times where there was no reassuring myself. When all was hurt and pain and loss. Where the present was unbearable, the past was too painful to look back on-and any future seemed terribly unlikely at all.

Oprah had 112 questions she prepared for Lance. I’ve been preparing mine for years. There’s so much I want to know; like how the hell did he ever learn to trust his body again after it took him to the very edge and made him peer into the precipice? How can he love so fearlessly in relationships and be able to lean on another person like that? Bring children into a world he knows has every chance of letting them experience the pain he has suffered physically? How did he managed to cultivate such a sense of unshakable certainty in all aspects of his life? Does it come naturally to him? Does he have to work it like a muscle? Is it part of his training-as vital as the physical components?

I find it remarkable a body that has suffered as much as Lance Armstrong’s can do any of the things he has been able to do physically over the years. But not as remarkable as I find it that he can get up, leave the house everyday, go to work and not be completely paralysed by fear. That he doesn’t live his What if’s on a constant loop. Doesn’t continually scan his body for signs of illness returning. That he really is future focussed and is so free of the past that he can inspire thousands of people with his story by telling it continuously, without having to relive it every time he does so.

How did he do it? And then consistently keep doing it? What kind of strength must that take? I find it astonishing. That the fear does not come to haunt him in the night. That he is able to live his life 100% free of vulnerability. Because that’s what he did. Pushed his body in ways we are really just coming to discover. All in total trust that he could handle it. Without ending up peering into the abyss again. Without being plunged back into the darkness. Into that nameless, formless terror. That defies description, but is felt all too well.

Lance can give back his sponsorship money, his titles, his many accolades. But he will never be asked to erase the hope he has given to so many of us. Nobody knows why some people recover from illness and some do not. We are no closer to understanding why this is. And to hide Lance Armstrong away. To try to erase the memory of who he is, and what he has achieved. It just makes the journey to our finding out how and why some do recover so spectacularly, all the longer. And that scares me. I’d like to know so much more about the way Lance Armstrong’s mind works. What he tells himself. What his inner-story is about his own body. What he does to reassure himself. I want to know it all. Because I think Lance Armstrong is a genius at wellness. And no one will ever be able to take that away from him.

Just like nothing will ever take away what his work has done, and continues to do for me to this day. And the rest of the story? The scandal? The untruths?

I won’t ever care.

Coming Out of the Dark

How will I know when I’m better?

I had a lovely wander around Central London one evening this weekend. I’m a big fan of pretty lights and it really doesn’t get much prettier than the view of the buildings by the river on the South Bank. Everything is covered in light. Everything is illuminated on the outside and seemingly lit from within on the inside.

How will I know when I’m better?

On the surface it probably seems like a bit of a strange question. Some people feel silly for even asking it. Don’t. It’s something we all wonder about. Chronic illness can last months, years, or even decades. Most people struggle to remember what life was like before. And we learn to put blinkers on our vision of other people fairly early on. We use it as a coping mechanism to deal with how crappy our own life has gotten. So if we’re avoiding looking at the people who are well, and sticking our La-La fingers in our ears and having a good old sing-song whenever someone tries to tell us how awesomely full their own life is, well, we become somewhat self-absorbed don’t we? Nothing wrong with that. It’s just a case of doing what has to be done in order to survive, mentally intact. But when we ignore other people and fixate on ourselves, it’s hard to collect any information on how a well, fully functioning individual conducts their own life.

How will I know when I’m better?

I’m not talking about the basics here, I’ve covered those a lot in other posts. I’m sure we are still all in agreement that being able to feed and dress ourselves is a good indicator things are on the up. Leaving the house everyday is also a bonus. Leaving the house everyday and going to work is also a strong indicator you’re doing fine.

How will I know when I’m better?

So you can do all of the above, and on the outside you’re even starting to look like everyone else right? How weird that the same question is doing the rounds in your head. Still needs to be asked. Still bears repeating. Why is it that you can do all of these things, and more, yet still know something isn’t quite right. That you aren’t there yet. Even when you can’t quite place what there actually feels like. So how will you know when you are well? Really well? Finally at that place no one has a map to?

How will I know when I’m better?

You stop existing.

It is entirely possible that you will spend the first 18 months of being out in the world again just existing. just surviving. Going to work, coming home and that is it. I know it too well. I did it myself. Step-by-step you will make progress, seeing the odd friend here and there, (clock-watching the entire time, looking for the first excuse to leave, counting the amount of steps from where you are sat to the nearest exit so you know what is physically required of you when you are allowed to go. Faking a gossamer-thin veneer of calm whilst you pretend to listen to them talk) going through the motions of being with them. But then going back to the safe, known, normality of doing the bare minimum. Back into the dark place of simply being alive. Getting through the day. Only just. Putting one foot in front of the other. Step-by-step

How will I know when I’m better?

You”ll know you are better when moments become wonderful again. When you are in a conversation and really in it. When you are able to finally become absorbed in an activity without constantly stopping to check you are coping. When surprises are a moment of sheer delight, instead of panic at the thought of the unknown. When you can work as many hours as you want to- and then spend the hours you don’t work playing. You’ll know you’re fine when the only time you are in your house is to sleep before the next day begins and you do it all over again.

How will I know when I’m better?

When life becomes exciting and full of variety, new people, fresh places and things. When the people that surround you are also excited by life, by newness, by dreams and possibilities. That’s when you know you’ve come out of the dark. When you make plans in advance, When you are the one to actually instigate days out or activities. Then you know you are okay. When life is varied and easy and fun. Then you are okay. Then you’re there. Then you’ve come out of the dark.

Then real life begins.

How will I know when I’m better?

I had a lovely wander around Central London one evening this weekend. I’m a big fan of pretty lights and it really doesn’t get much prettier than the view of the buildings by the river on the South Bank. I felt covered in light. I felt illuminated on the outside and seemingly lit from within on the inside.

That’s how I know I’m better.

The missing piece to the puzzle

Jigsaws eh? Remember those buggers? How many hours of your little life did you spend stuck at the dining room table as a weeny one. Tiny 5 year old fists hammering ill-fitting pieces together…daring to look Postman Pat straight in the eye and tell him he is supposed to have 3 nostrils…and a lamppost growing out of his head…firmly maligning the relative who got you this rubbish excuse for a present…an educational piece of apparatus thinly disguised as a toy…judging them with tiny primary school sized eyes…

There would always be a method to it though wouldn’t there? So you start with the sky and fill that in, a tree or two etc work your way around the outside then start filling in the trickier bits…

Wellness is just like that. there will be so many parts of your life after you’ve already sorted, stuff you are busy sorting.. but then there’s this one bit. One nagging part. The bit that doesn’t fit the other pieces, no matter how you try to hammer it into place. The gaping hole it leaves in the middle of your picture. That part you just get stuck on and can’t move past. It’s difficult to spot for two reasons:

1) It’s something you do constantly, chronically. So much so you wont know you’re doing it all the time. Nightmare eh?

2) You will put it in many different guises, dress it up in various scenarios, give it different names. It will have the same feeling attached to it though, every time. It will be the feeling you instinctively want to avoid more than anything in the world. It will make you feel the very worst you are capable of feeling. It’s your biggest fear, it comes from what made you ill in the first place..and its the thing to get past to get you to where you want to be. Whole again. Normal. Firing on all cylinders. Recovered. Whatever you want to label it. I just like to call it getting you THERE.

I can tell you what mine was; that I’d break wherever I was, instantly. That I’d get ill again and I’d be powerless to stop it. Not even that it would kill me this time. Just that I’d ever have to live through feeling that useless, that hopeless all over again. That I’d be in public and I’d be left totally alone with no one to help me. It took many forms, this sense of never feeling reassured by anything. At first I thought it was just that the world seemed like a dangerous place-but that never quite sat right with me. I wasn’t afraid of other people, I was afraid of my own body. That it would just break. Again. With no warning. That’s what the root cause was. I never felt vulnerable to other people hurting me, but if I couldn’t trust my own body then I was not safe with anyone, anywhere. I couldn’t sustain friendships. Couldn’t for the life of me go near a relationship. How can you when you distrust yourself so much? You can’t give of yourself to anyone, anyhow. You cannot receive reassurance from a soul with a mindset like that. You’re just not wired to receive anything in that state. And so the distrust and uncertainty become the lenses you wear to view the world, it becomes the norm.

It took me years before I realised what I was actually missing. I’d existed in a world without any certainty, never feeling safe for a moment, not feeling reassured or supported by anything. Literally it was gone in the moment I lay on my bathroom floor waiting to die just minutes after feeling fine. All the certainty I’d ever known left in that moment and I’d never felt it from that point on. I go so used to life feeling this way that I didn’t event notice it was missing. I did know something was missing, because the anxiety never left me, this gaping black hole that led to sheer panic. That constant reminder that at any moment all this could be snatched away all over again.

When I did figure it out suddenly everything fell into place. Instantly I was better. I was okay. I was whole again. All I had to do was find that reassurance. BE that reassurance. Now every day of my life I make sure that I know I’m okay. That I know my body is certain. That all is well. That I am safe now. It’s a belief structure I have to achieve before I walk out the door or the day doesn’t get very far, trust me. And if I lost that piece of the puzzle again then I know the shadowy uncertain place I existed in for so long would be just around the corner, waiting for me…

If I hadn’t felt all these worrying, niggling negative emotions I never would have found my missing jigsaw piece. I would have stumbled around frightened in the dark forever. My bad feeling that made life so hard was what saved me. It became my beacon, lighting the path for me so I could finally stumble upon that which I did not even know I was looking for.

What’s your missing piece? Which aspect of your life is troubling you right now in ways you can’t even fully put words to? What’s holding you back from being whole again? Which bit doesn’t quite fit where you think it should? Because that’s your missing piece to the wellness puzzle. And if you leave yourself open to finding it, even if the thought of doing so is scary as hell-then that final bit of recovery is yours for the taking. Just remember…it’s always in the last place you look…

Chicken Licken’s Guide to Relapse

When I was a tiny tot I used to love the story of Chicken Licken. I mean I L.O.V.E.D. that fluffy little lad. Every night before bed Chicken Licken was requested and my poor long-suffering Mam and Dad would once again reel off the story, bravely resisting the urge to try to skip a page or 5…

For those who weren’t as obsessed with the fellow as I, let me re-cap. Chicken Licken was having a grand old time strolling around the woods, (as young chicks do) when a great stonking acorn fell on the poor fellow’s head. Chicken Licken being a pragmatic soul deduced from this that the sky was falling down- and off he shot to tell the King.

He had a social-conscience on him did our young Chicken Licken, so as he met his assorted feathered friends also off for a jaunt in the woods, (Hen-Len, Goose-Loose Duck-Luck, you know the usual gang of lads) he warned them all gravely against heading that way,urging them to come see the King with him instead and help break the bad news of imminent sky-fall.

As often happens when young chicks tell tales, mass hysteria ensued and the news spread like wildfire. All feathers were ruffled, the fear grew and grew and everyone got very upset and caught up in the drama. At the point of fever-pitch who should pop up but Mr Fox. Usually the birds were wary of foxes (especially this scoundrel) but damned if Mr Fox upon hearing the news didn’t offer to take all the feathered chums directly to the King and far away from the scary sky-less woods. Hurray! And lead them he did…straight to his fox hole where he promptly fed the poor little buggers to his family.

BAD. LAD.

When you’ve been unwell for years. When life has been hard and scary but you’ve managed by some miracle to move on from it and into a place of wellness, there is always that fear that it will all come back. That you will relapse and have to go through this hell on earth all over again. It’s a fear so big it’s like the fear is having you. The nameless, formless terror that wakes you up in the night. It finds you when you are alone and at your most vulnerable and tears you apart inside. No one can give you any guarantees. Life happens. Relapse does happen. But relapses can be stopped in their tracks at many stages. They can be overcome. Often the fear of relapse is far more scary than the physical occurrence itself.

Fear destroys. It corrodes. It massively hinders judgement. It turns acorns into full-blown Armageddon. Would Chicken Licken have gone near a flipping fox had he not been blinded by fear? I think not. Who trusts a fox? And besides Chicken Licken knew the way to the King. He’d been there before. He knew how to ask for help and where to seek it. He was just so caught up in the fear of fear itself that he gave his power to someone else. And that fear ate him up. Literally and Metaphorically. Then there was no more sky for him at all.

It is entirely possible to get through to the other side of a relapse back to health. Feeling vulnerable to the idea of relapse is also easy to treat. No one should be fearful of their own bodies or trapped in a prison of their own anxiety. There are so many ways to get well. So many ways to overcome the fear. If you got well once you can get well again-and you don’t have to do it alone. Just make sure the people you seek help from don’t add to your hysteria. Make sure you seek guidance from the right source. Someone who helped you get well last time. Or at the very least believes that your recovery is possible.

Avoid the foxes. Go straight to the King. And the acorns? They can only scare you if you don’t see them for what they are. Just a tiny bump in this continual journey. A journey that you get to choose the destination of. And if you truly know deep inside that the sky is the limit for you, you’ll be looking up there anyway and see those acorns coming a mile off.

Peace Be With You?

I went to a christening recently. I hadn’t been inside a cathedral for years and I’d forgotten there’s a full service as well as the baby-wetting sideshow.

As the bishop was doing his thing it came to my favourite part of the service growing up. The bit I’d completely forgotten about. The one where we are asked to turn to one another and offer the people nearest to us a sign of peace. Then we actually say to one another “peace be with you”. I had no idea why I loved it so very much as a kid. Possibly the idea of being legitimately able to talk in church without incurring the wrath of the strict Irish priest-or much scarier still the particular brand of wrath exclusively handed out by a contingent commonly known as the hardcore Irish Catholic gran. Heaven deliver and preserve us all from publicly shaming an Irish grandmammy -and coming between her and her Sunday worship I’m telling you. Cos if you do then you’d better be a praying man-and a far braver man than I…

It’s not just the chatting though. It’s the actual fact of it I think. Turning to a person you may never have met and telling them you wish them peace. Because peace is such a lovely state of being, isn’t it? And though I know we can’t physically give it to each other, we can nevertheless offer the wish. I’m sure a lot was lost in translation between the church switching from services in Latin to conducting them in English but I think they were bang on with the terminology here “offering a sign” not forcing, not insisting, not demanding. Just offering. “I wish you peace, I’m pretty sure it’s here for you if you want it. No prob’s if you don’t. No fuss. No bother”

Imagine if we lived in a world where we could all stop each other in the street, in the supermarket, at a bus stop. Where we could just all lightly offer each other a sign of peace whilst we waited in queues. I can’t help but think the world would be a much less lonely place for some. Because some people need that feeling of peace very badly indeed.

I didn’t know anyone else at this Christening. It was in a town I’d never been to before either. Both of these factors I still struggle with these days. I start to feel like that frail, frightened person again. The one I fought so hard to leave behind. The one who desperately tried to navigate the world after being away from people for so long . And when I feel like this I still have to fight the urge to run home to my Mum. To a place I feel is manageable and safe. That place hundreds of miles away from where my life is now. But when I overcome these feeling of fear and uncertainty. When I find myself holding  conversations, laughing and sharing a moment with a group of strangers, I kind of step outside of myself and I feel so proud that I can do it. That I can physically stand. That I can look a person in the eye and talk to them. That I am confident enough in myself and in the world to laugh and joke and just enjoy having this moment with them. Then my automatic reflex is to feel silly for feeling proud of myself.  A woman my age probably shouldn’t be bursting with pride that she can handle a situation on her own without her mum having to literally hold her hand throughout it. But I override this feeling of silliness and I remain proud. I offer myself a sign of the peace I have once again managed to find in this situation, despite feeling like it still eludes and defeats me so much of the time.

I liked this offering of peace malarkey very much. So much so I decided I was going to start offering people peace silently in my day-to-day tasks. Offering them the same congratulations I now offer myself when I do something that was impossible a few weeks, months, years back. That I would silently give them a little of what I am finally, finally able to begin offering myself. Support, stability…dare I say love? Yes, probably a bit of that too. Everything that peace represents or feels like; solidity. Certainty. Ease. Comfort. A weird thing happened when I tried to do it though. I found that I love people so much these days that I was already unwittingly doing it anyway. It’s probably why I hug everyone I meet-or hold their hand whilst talking to them, (a trait generally unacceptable in anyone over the age of 9, yet I do it anyway flagrantly, shamelessly) because I can’t help it.

This week I was talking to a young man about his career options at an event I attended. At the end of our chat he smiled the most beautiful smile and said to me very quietly “thank you Carrie, Jesus loves you”. And it was such a lovely thing to hear. Just that offering of love. Just there if you want it.  No prob’s if you don’t. No fuss. No bother. It made me realise we do all offer each other love and peace so much of the time, that it really is our default setting. That all love given does in fact return. That we are all loved. We are never alone. Regardless of what shape or form our beliefs may take.

At a baptism or a bus stop. May we all feel loved beyond a capacity to comprehend. May your god go with you. May we all find peace. Because if we can find that place of real peace, we don’t really need much else in life-yet the stuff we used to want to compensate for the lack of peace, the people, the places, the possessions. they seem to find us anyway.

Stuck. You.

You know what has featured quite heavily in this journey to wellness for me?

Bathrooms.

Loads of the buggers.

Starting with the floor of the one in Sussex I lay dying on, moving through the years to my parent’s house in Newcastle where I’d lock myself in and cry when I was practising walking again (excellent acoustics for the budding connoisseur of crying I assure you). Right through to the public ones I spent many a quality moment in, shaking like a leaf trying to persuade myself I could go back out there and successfully talk to that person/stand in a queue/walk around an entire shop/spend 5 minutes out in the world safely without my Mum. If only I’d thought on I’d have sported a bottle of bleach and a blue jay cloth upon my person at all times and the public loo’s of our fair nation would have been all the brighter for the hours I spent procrastinating amongst the U-Bends…

I’m not writing this from a loo by the way. I got past that bit. I looked at my life and decided it was time to move out of the loo’s and into the Real World. I became unstuck. I moved on.

I’ve been through the entire emotional spectrum several times over during these past few years and I can honestly say that the worst feeling in the world is the feeling of being Stuck. Nothing is worse. Not the feeling of being certain you are about to die. Not the fear that comes with discovering you didn’t but that your body no longer works.Nothing. Being stuck is the worst thing that can happen to a person. An inability to move forward either physically or emotionally is hell. Because hell is an actual place and that’s what happens there. Second after minute after hour after day, week, month and year of just Nothingness. Trust me.

I set this website up to help get anyone who is where I was to get out of their physical state of being stuck. It can be done. we are doing it every day. But what happens after you get your body back? You move on. You keep moving on. Leaving all thoughts of grief for the misspent years you will never get back and you charge forwards never, ever looking over your shoulder at where you’ve been. Because it’s not a place you will ever be going back to. I’m going to make sure of it.

Leaving the past as something that is gone forever frees up a lot of energy to concentrate on your Here and Now. And it’s not just a tool to use to stop you from dwelling on the truly crappy years that have passed. It’s the greatest tool in my arsenal of recovery that I’ve ever discovered. Because truly when you know the horror of being stuck and the soul-destroying aspects of it you would not wish it on another living creature. Not one. No not even the girl/boy/hamster that didn’t want you to be their main squeeze. Or the boss that didn’t like you. Or the friend that didn’t want you now you’ve changed. Why would you spend you time wishing to still have them be stuck with you as their focus of attention? How could we want that sort of unhappiness for anyone? How much nicer to see all of us moving forward, dashing through life like it’s a playground and finding new and exciting adventures that continuously shape us into new people with fresh things to strive for. How much easier to look straight ahead for the new person around the corner that’s a much better match to the ever-evolving us anyway? And the next one. And the one after that…

Let’s not be the people who worked so very hard to create our own Life After-and then pretend to be living it whilst actually hiding in our (many, many) bathrooms. Let’s be the ones who are so pleased that we all get to be emotionally free anytime we choose happiness, no matter where our physical bodies are right now. Learning to say Stuck You. Stuck You All to any thought that makes me unhappy or takes me away from the true beauty, the gift of my independent life that is my present, is the best thing that’s ever happened to me. To be free enough to look at everyone, either physically or in my mind’s eye and wish them well and be genuinely happy for all the new and exciting stuff that is coming their way is a feeling of being blessed beyond belief. It’s my greatest wish for you, beyond all things.

No more bathrooms please, literal or figurative. It’s much nicer out here, I promise.

Lots of Love,

Cxx

Feeling a Moment

Feeling a moment

Not being half present, wondering if your body is going to work, if outside circumstances are going to stay placid enough for you to remain calm too. Not pretending to be enjoying yourself but letting a quarter of that joy in, all the time actually wondering how to best make your escape plan back to a place you feel safe-to an environment you can control.

Not turning down an invitation for a meal with a friend because you are scared food is going to make your feel ill or out of control. Not clock-watching during a family gathering, a constant undercurrent of uncertainty about how much longer your body can hold out and appear normal.

No more pretending.

Feeling a moment. Feeling every moment. Immersing yourself in it. Really feeling the grass between your toes, the warmth of the sun. Real belly-laughing at a story you are being told because you are 100% focused on it-not worrying if you are pushing yourself too hard by being there in the first place.

Feeling strength and certainty and confidence every minute of every day. Not half-investing in your world yet half expecting it all to come crashing down again and hoping you’ll survive it one more time.

Really living, taking your body and health and sense of ease in life totally for granted. Forgetting you were ever in a position to do anything but. Whether you have been sick for days, weeks, months, years or decades. Absolutely knowing that’s what life is going to be like for you now. Consistently. Permanently. That’s why this website exists. To get you there. Together. Now.

Feeling that moment. Because you deserve it. Because it your right. But most importantly-because you can.
Cx

Being Ok With Being Visible

A little over two years ago I wore my dad’s clothes. I cut my own hair with kitchen scissors. I never went near a mirror, I physically looked like a 10 year old boy. And l lived in mortal fear of a man so much as looking at me. Now I don’t do any of those things. Here’s how I got from there to here-you know, just in case you fancy giving it a go yourself…

For a long portion of this journey being visible is far from ok. Being visible has been such a traumatic thing for so long it doesn’t seem like it will ever be an attractive option. People stare when you weigh half of what you should and can’t sit up properly on your own. They stare when they recognise you in the street and are shocked by what they see. It’s not a nice feeling, especially when you can’t see things changing anytime soon. The entire world seems far, far too much for you. No wonder you want to hide.

I don’t think it ever would have occurred to me in a million years that men would ask me out. But maybe subconsciously it did because wearing your dad’s clothes is going to definitely put a stop to that.

I knew I had to overcome my aversion to being seen or noticed because if I wanted to show people they too could get better, (just literally out of the bed/wheelchair though not actually living a nice full life-I didn’t know that was even possible for me at that stage so I couldn’t know it was possible for you), I was going to have to figure out a way to get on tv where I could speak to lots of people at the same time. And as far as I could see people didn’t tend to hire girls in their dad’s clothes.

I started small. Took baby steps with wearing things that would be just about described as dresses. Heels were out obviously as I still couldn’t walk that well. I may have bought some on eBay and kept them in my wardrobe so I could look at them when I was feeling brave.

I stopped cutting my hair with kitchen scissors and just let it grow. I bought makeup and put a little bit on here and there. I got really brave and got my nails done one day. It was nice and non-traumatic as it turns out l didn’t have to actually speak to anyone so I went back…

I took my glasses off so I couldn’t really see if people were looking at me, l wore my headphones in case blokes tried to talk to me. A kind of mobile sensory deprivation tank if you will. (Confession time-I still do both, purely out of habit, even though neither really work anymore).

It was a gradual and basically horrible process but I got braver and got more used to the outside world and the people in it as my body got stronger. I got less afraid of people noticing me. It didn’t feel traumatic like it used to when l was being pushed around in the chair or when I was trying to walk. My body forgot and so did I.

I like clothes now. I enjoy that I get to dress up for work. I don’t even feel visible anymore. I’m too busy being happy that I have the freedom to do anything I want without being scared and sick all the time. I think what’s happened is my love of life is reflected in the way I choose to present myself. And the people who have known my two years or less have absolutely no idea it doesn’t come naturally to me. That I had to fight myself every inch of the way to make sure I got here. I like that the struggle doesn’t show.

So if you are hiding away in your dad’s clothes right now. Or cutting your hair with kitchen scissors. Or avoiding mirrors because you don’t recognise that person staring back at you. It does get better. It will feel easier.

Be nice to yourself. Just keep taking those baby steps safe in the knowledge you are headed in the right direction. I’ll be waiting for you when you get here.

Cx

It’s All About Control

If you can get to the point where you can control your own body then wonderful because that is the ultimate goal. That’s why I made lifeafterthechair.com That’s why I do what I do for a living as publicly as possible. Why so many of you get in touch.

Until that day comes (and it will) you always have control over your thoughts. Always. No exceptions. And that’s important. It’s so important. It’s the most important lesson this entire experience will teach you -or any of us.

It may take some practise. But when you get good at it not only will it seem less important that you can control your own body-but controlling other people will be a totally redundant issue

That’s probably the biggest behavioural shift my own life after has brought me. Before I got sick I used to believe it was everyone else’s Job to make me feel better. That my thoughts were a law unto themselves. That I could never change who I was. That my personality and beliefs were set in stone. Then it really was just me and my thoughts alone for hours, days, weeks and months. And I had to change my thoughts to survive really.

It wasn’t an overnight change. I still very much wanted someone else to get me well. Obviously if they had I’d still be the same person I was back then. Holding other people responsible for my emotional well being. It was deeply scary to realise no one could fix my body for me. It was incredibly freeing to realise I could fix my thoughts whenever I wanted.

It’s important to feel you can control something. When you’re an adult and you can’t physically care for yourself in the most basic of ways. If you can’t feed yourself, if you can’t wash yourself. If you can’t do any of the things grown ups are supposed to be able to do then it is soul destroying enough without having your thinking work against you too. So controlling your thoughts is the only real option left. Not because it seems like an attractive new age concept written for the Self-Help section of Waterstones. But because it could be the difference between you surviving this part or not.

Because I was isolated away from people for such a long time whilst I changed my thinking, I didn’t even realise how much my attitude to their behaviour had adjusted. Because it was really years before I was capable of normal social interaction-I really spent my time just trying to cope with being around people again-it came as a massive surprise when their behaviour didn’t affect me.

I still liked it when people were nice. I just never took it personally when they weren’t. If someone wanted to be my friend/employer/boyfriend and I felt the same way then lovely. If not then it didn’t seem like the tragedy it would have been in my old life, where I took everything personally and seemed to seek out reasons to not feel good enough.

So now I have a body that works, a mind that is my friend and my life is spent with people I like who genuinely want to be around me too -without me needing themto behave in a way that I believe is going to make me feel better about myself.

And If ever any of the above stop working I know how to fix them. That’s real freedom to me.

Cx