Tuesday, 3 June 2014


Well, what a light-hearted post to launch myself back in to blogging after an enforced hiatus due to ill-health. And, therefore, I am very late to this as a hashtag, but this isn’t a subject that is only important for a few weeks. This subject is something that, as a woman, impacts my life whenever I leave my house. You may think that’s an exaggeration, but really, really it’s not. 

I was still in middle school when my body started changing from that of a young girl to that of a woman. I started my period at the age of ten and with that came the budding of breasts, the widening of hips and within a year I was a young girl who had the changing assets of a woman. This wasn’t something that I went through with my friends, this was an isolating and frightening experience: when I had my first period I had no idea what was happening, I was going out to buy my first bra far before most of the other girls at school. I, probably, wasn’t treated any differently but I felt different. Isolated. 

Quickly, though, I discovered that this changing body was powerful. It was, by far, the most empowering thing I had experienced. I learnt that I could win boys and attract attention all with the arching of my back or a flick of my hair. To me this wasn’t men being in control of me, it was me being able to control most situations just because of the way I looked. How wrong was I?! 

In parallel with this I constantly worried about my looks, I went from being a tall, lean, sporty girl, to one who didn’t grow taller after the age of twelve, and who had a body that was different to the beautiful barbies and film stars that were held up as beautiful. I was, instead, a short, plump, brunette who worried daily about the size of my hips and the shape of my thighs. 

This insecurity quickly led to me feeding off of the way men and boys treated me; by the age of fifteen I could get myself and a group of friends in to a club just by wearing a low cut top. And this, obviously, makes me sound like a precocious twat, but this is an honest account and, well, I was. And I was also very, very, naive. 

By the age of fifteen I had already had my drink spiked and ended up in a strangers house, coming to at 5am with no idea where I was, where my boyfriend was, and who was laying beside me. I shook like I leaf as I left the house, finding myself in a different part of town and running, shoes in hand, like my life depended on it. 

And yes, a similar thing happened again when I was sixteen. I was young, I didn’t learn, and I have paid for it many, many nights as I’ve woken up drenched in sweat and not being able to shake the feeling that I was that young girl again. 

I may have been granted a powerful weapon, but my god I didn’t know how to use it. 

And I still blame myself for those two incidents. And for the numerous other near misses. This blame, guilt and shame has shaped who I am today and remains with me. Victim-shaming and blaming has such very real consequences. 

I was so very, very lucky that throughout my teens I had a boyfriend who, okay didn’t turn out to be my husband, but is still one of the men I respect most on this planet (not least for putting up with me!). I was also lucky that his friends became my friends and showed me how wonderful men could be. 

So, rather than leaving my teens hating men for hurting me I saw them as capable of good as well as bad; which is just the same way I saw women. 

Fast-forward fourteen years (bloody hell, I’m old) and I have learnt the power that my body has to do me serious harm.

Surely this doesn’t, still, affect me every single time I leave the house? It absolutely does. What I wear, where I go, the plans I make, whether or not I will walk home alone, the fear I have when getting in to a taxi, the way I hold my drink, how I worry and adjust my top, pulling it up, constantly if I think I’m showing a little too much cleavage. 

Just because of two isolated incidents over a decade ago? No. Because of the looks I get when I walk down a street, because of the way some men think it’s ok to touch my hip as they talk to me, because of the not-so-sly comments about the size of my chest, because of the way some men think that if I wear something that I feel good in, but that obviously shows too much cleavage for me to be anything other than easy, it is okay to grab me, because of the way my heart races when a man walks behind me, I could go on. And on.

I am not a looker. I have a wobbly stomach, thighs that rub together as I move, a body that truly tells the tale of my life. I, wrongly I should point out, assumed that after my disability this would change. The comments change, sure, but the touching, the looks all remain. 

So, whose fault were the two incidents that happened as I floated around the age of consent? Mine, because I wore a top a little too low, a skirt a little too short? Mine because, to be honest, I enjoyed the attention as doors were opened and drinks were bought? Mine, because I should have known better? 

Or, instead of victim blaming should we instead be looking at the perpetrators? Instead of teaching our daughters how to dress to avoid unwanted male attention, instead of teaching them how to stay safe around men, should we, instead be teaching our sons to respect women? Teach our boys how to treat women irrespective of what they wear or where they are? 

This isn’t ‘just’ an issue about rape. This isn’t even ‘just’ about discrimination. And it’s not even ‘just’ about men objectifying women. It’s about the things that are so ingrained in us that we just think of it as normal. As acceptable. 

As long as women carry on deciding what to wear to minimise the chances of men thinking they’re ‘easy’. As long as women carry on refusing to walk home alone. As long as women quicken their pace as they walk down a darkened street. As long as women place their hands over their glasses for fear of having their drink spiked. As long as what a woman wears determines her sexual eagerness. As long as all of these, so subtle we probably barely even know we’re doing them, things continue. For as long as these are the lessons we teach our daughters: This is not okay. 

Just because something is deemed normal, just because, for the most part, we all keep breathing, just because all of these things seem impossible to change, that doesn’t mean we shouldn’t try. 

No, not all men, but yes, yes, all women have had similar experiences. Things must change. 

Friday, 20 September 2013


Relapse (noun): A return of a disease or illness after a partial recovery from it. 

The day starts with the sound of the alarm causing me physical pain; it hurts as I turn my head to switch off the alarm, feeling as if my brain is too small for my skull and instead of fitting snuggly it is rattling around inside my head. I open my eyes, with uncertainty as to whether or not I’ll be able to see the time on the clock face. Today my left eye is working but my right is worse than it was yesterday. I spend the next five minutes squinting trying to work out if it’s a significant enough change for it to signify a new attack, but settle with myself that it’s just part and parcel of the relapse that has me in its grasp. 

I sit up, pushing my reluctant body up with my arms, with electric shocks shooting from my wrists up to my shoulder. The dizziness starts and all I want to do is lie back down. I fumble for my stick, my brain not quite yet compensating for the lack of sight in my right eye. My stick in my hand I push myself up from the bed, failing to balance and falling back on to the bed three times before finally finding my feet and standing up. 

The first step that I take feels like my leg is pushing against a solid mass instead of air. My brain isn’t connecting to the muscles and despite feeling like I’m telling my leg to move it isn’t happening. I try my better leg, and my right leg pushes forward, albeit reluctantly. With my better leg forward it is easier to drag my left leg and take steps towards the bathroom - although each step feels like I’m pushing through treacle and huts every nerve ending, leaving me exhausted, dizzy and nauseous. As I reach the bathroom and the nausea becomes too much and I vomit the water that I had cautiously sipped before getting out of bed.  

Due to the relapse my bladder isn’t functioning as it should, meaning that this morning I have to catheterise to go to the toilet. Because of my sight being impaired, and the spasms that are causing my whole body to twitch involuntarily, this takes longer than usual and causes pain as I insert the catheter - feeling like it is a blade not a flexible plastic tube. 

Once I’ve been to the toilet I try to walk downstairs to get my children some breakfast, and to try to eat something myself so that I can take my morning medication. It feels as though I am walking through treacle, with every movement hurting my legs. The feeling of the cloth of my pajamas brushing against my legs feels piercingly sharp, like my pajamas are made of a prickling material not soft jersey. Every time I place my foot down and it connects with the floor the sole of my foot feels as though it is burning, as though I am walking on hot coals, then the pressure and weight of the step travels up my leg causing every nerve ending from the tips of my toes up to my hip to feel as though they are on fire. I take a deep breath and push through, some mornings the first steps are agony but the pain fades with each one. This relapse is not being as kind and the pain continues with every step. 

Getting breakfast I quickly realise that the twitching I’d been experiencing is worse when I’m trying to do things. I also find that every movement, raising my arm to shoulder height to open the fridge, bending down to get a cup from the cupboard, is difficult. The air feels thicker than normal, and by the time I sit down with my breakfast I already feel exhausted. I take a spoonful of cereal and raise it out of the bowl but my hand twitches and the cereal lands on my top, not in my mouth. The next spoonful of cereal ends up in my mouth, but the difficulty that I’d been having swallowing seems worse and no matter what I try I cannot swallow the cereal leaving me now option but to spit it out. I then try to take a mouthful of tea and just manage to force it down. 

Walking, struggling, back up the stairs to get dressed feels like scaling Everest. The air thick, my body not responding or doing as it should. By the time I reach the bedroom I lie down on the bed and it is all I can do not to fall back asleep. 

I have only been awake for forty five minutes and I already need to go back to sleep. The room is spinning, I can’t catch my breath and I feel horrendously sick. With every movement feeling as though someone is pushing against me, every action causing me pain, I am exhausted. My eyes close and I’m not sure if I fall asleep or I pass out. 

My day continue like this, there is no let up, no respite. Relapses are cruel, can strike at any time, and come regardless of whether I’ve spent the previous days resting or being busy. This post is not exaggerated, and I haven’t added anything to make it sound dramatic. This is how a relapse feels in the best words that I have to describe it. Of course, nothing comes close really. You can’t describe pain, or exhaustion. Relapse days are spent in agony, in tears or on the verge of tears, and with a deep tiredness that sleep does not relieve. 

This is not just my story, this is the story of people living with a range of chronic conditions. My NMO is ravaging my life, and means that my children and my husband have lives that I don’t feel that they deserve. They deserve so much better. Because relapses like this have an impact on my entire family, who have to struggle and muddle their way through just as much as I have to. 

This is my day up to 8.30am. All of my energy reserves already depleted. Then, what? This week has been hell, I have never been more thankful for Friday. How many more people that you know will be saying that because they just cannot go on anymore? I know this is not just my story. I am not the only person suffering through relapse weeks: not living but surviving. All I can hope is that next week I can live and not just exist. 

Tuesday, 2 July 2013

30 Before 30

Well, it's 8 months (give or take a few days) until I'm 30. Will time ticking on, and so many things that I would like to do, it seemed pertinent to make a list of all of the things that I want to achieve. Although I've never been a bucket list kind of person, and I'm probably the world's chief procrastinator (who never misses a deadline), it seemed more fitting to make a list of the things that I want to do, or start doing, before I reach 30.

There aren't many ground-breaking ideas on there, just simple ways to better myself and my life. With a few amazing experiences thrown in for good measure.

So I can't back out of it, here it is. Chase me after my birthday, yeah?

Food & Drink:

1. Bake one cake a week
2. Try a vegan diet for one month
3. Make 30 new dishes for dinner
4. Invent and name a cocktail
5. Make a cookbook of my favourite dinners
6. Try 15 different types of gin
7. Make donuts
8. Try 30 cocktails
9. Hold a dinner party once a month for my friends
10. Make a pake


11. Go to NYC
12. Attend first ever festival
13. Visit Charlotte in San Francisco
14. Go to see a West End show
15. Visit 1 new country in Europe

Ambitions/Goals/Making me better:

16. Write a novel
17. Buy & play a flute/saxophone
18. Read 30 books
19. Stay up until sunrise
20. Get a new tattoo... Or 2... Or 3...
21. Throw a party
22. Learn a language
23. Learn shorthand
24. Print & organise different photos
25. Update CV & submit to review sites
26. Keep a journal
27. Organise my wardrobe & shoes
28. Re-learn to ride my bike
29. Make or create something
30. Look in to further study

(If they're like this, I've not jacked in the idea: it means that I've either completed or started in earnest.)

Tuesday, 18 June 2013


Recovery (noun): A return to a normal state of health, mind or strength. Or, the action of process of regaining possession or control of something stolen or lost. 

Recovery means many different things to many different people. When someone has been struck by an obvious physical disability, as I have, it is easy for people to talk about my ‘recovery’ in terms of my physical capabilities. However, anybody that has suffered with any kind of illness or disability will know that recovery is not just about how far you can walk, or whether you need to take the handfuls of pills everyday to keep you going. But what is the ‘more’ that is so important when it comes to talking about recovery? 

Every single person who goes through any traumatic event (yes, having an illness, or developing a disability, are traumatic events) will find their own path to recovery. There is no handbook because just as our fingerprints are unique, so are the paths we need to take back to finding ‘who we are’. And in my case, the person I have found post-trauma is very different to the person that the trauma caused me to lose. 

If anything, I am like ‘old-Suze’ on Speed. I love the things I used to love, but I love them more. I get angry at everything that used to anger me, but am considerably more vocal about it. Any regard for what strangers think of me has disappeared. I sing louder, dance harder, travel further, am more determined, more passionate, just... more. 

This has had an impact on my entire life. My family are my heartbeat, and they are always at the centre. I want to protect them, and I want to teach them the view of the world that all of the heartache has taught me. I want to give them the eyes that see love everywhere, the heart that gives them permission to love things wildly and madly no matter what others think. 

Friendships change when one person in the relationship goes through something that the other person doesn’t; having children is a really obvious example. The same can absolutely be said for when one of those people goes through an illness or develops a disability. It takes a huge amount of effort, empathy and understanding for someone to truly have an idea of what it is like to live, day in day out, with a disability or illness. And, as such, relationships can falter. However, at the same time new friendships can blossom and these can become the biggest blessing there is. 

The thing about illness is that it is interesting, exciting, for those around you to begin with. It sounds hideously morbid but it’s true. But, the thing is, at the same time as it becomes boring for those around you, it slowly becomes increasingly more soul destroying for you. As people think your life should be going back to normal, that is when you are crying in to your pillow because it doesn’t feel like it’s getting any easier, because you feel like your life has changed irreversibly and because everything is so bloody difficult. It is at precisely this point that I learnt the people who are in it for the long haul. 

My recovery has, often, meant smiling and saying “I’m fine” because saying how I really feel is far too tiring, and I get the feeling that people are really quite sick of hearing it. It has meant putting on my war paint and getting out because whilst physically I feel like shit, mentally I need to leave these four walls before I lose my mind. It is only those closest to me that know that some days I’m really not OK; that it’s not unusual for me to be sick as I walk out of the door and take handfuls of anti-sickness tablets just to make it to the shop and back. 

So, why do I do it all? It’s because recovery, to me, is more mental than physical, despite my obvious physical disabilities. And, just as physically I have a long way to go until I’m fully recovered, mentally I have even further to travel. 

Doing things I love, being with the people I love, are my medication for my mind - just as the physiotherapy and anti-spasmodic drugs are my medication are medication for my body. 

Just because I am out of the house, just because I am having fun, and just because I am doing things that I know are lovely and I am so incredibly lucky to be doing, does not mean, by any means, that I am recovered, that I am well. It just means that I am trying to make my road to recovery as smooth, and as quick, as possible. And sometimes, it means I need to look after my mental recovery more than my physical recovery. 

Recovery isn’t always what you think it is, and each person’s road is different. No person treads the same path twice, and no-one has the right to judge anyone else’s path. All we can do is walk alongside them, holding their hand, or walk behind them, holding them up, and be on the sidelines cheering them along. Because it is those people who have been there all along that will be there at the finishing line, with gin and champagne - and that will be one hell of a party. 

My Recovery party will be the biggest party of all; with a room full of the best people in the world.