You're a Weakling

You're weak. The weaker sex. Weak in mind. Weak in everything. You can't even open a bottle of water. Life is about survival of the fittest, weaklings don't survive. What is the point to you?

These are thoughts that have been whirring through my brain for the last few years. Despite the fact that I knew I wasn't well, despite knowing that my lack of strength wasn't entirely my fault, my brain liked to convince me otherwise. And the problem is that the longer my brain poked at me and told me that I was, essentially, a pathetic human being, the weaker I felt myself becoming. I didn't want to fight the voice any longer. I didn't want to survive much longer either.

And this is just one of the issues I have with my brain. Sometimes it can be a struggle to get out of bed. And one point it was because my body was physically unable, sometimes it is because my brain made it emotionally impossible for me to gather up the motivation.

Yet through it all, I still tried to convince myself that I wasn't that weak. Growing up, a lot of my personality stemmed around the fact that I was strong. Not mentally because I don't think I've ever been mentally strong. But physically. I was the one in our female only household who could open the tough jars, the one who could carry the heaviest items. I helped at school doing the things with the boys that some of the girls shied away with. My strength and my muscles made me feel less conscious of my weight. I wasn't just overweight I told myself, I was also overweight because of my muscles that made me strong and capable. 

I never wanted to be one of the men and I never wanted to be one of the strongest women ever, but I was proud of the fact that I wasn't weak. 

So becoming weak has definitely taken it's toll on me. 

It didn't occur to me until recently just how weak my body has become though. After being physically ill for over two years and still not doing much strength exercising, I am at a point where I can barely carry a handful of books without it hurting my arms. And it sucks. 

It occured to me the most when I was moving my furniture and my little sister who was always weaker than me was able to carry items effortlessly whereas I stood with arms shaking and sweat pouring out of my skin, barely able to keep holding on. 

And then on holiday when I went to Go Ape and didn't have the strength to lift myself up over some of the obstacles or even keep myself in a sitting position for a small portion of time. 

My physical strength has gone and it is going to take a lot of emotional strength for me to get it back up to speed. Now that I am feeling better - albeit that's a swinging roundabout at the moment - it is time for me to start getting my strength back. It's going to be a tough and long uphill battle. It is the longest time I've ever gone without properly exercising but I can do it, right?

So every day I am going to wake up and tell my brain that it is wrong. 

I am not a weakling, I am weak today but I will be strong again. You just wait and see.

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It Finally Happened... I Got A Diagnosis!

If you've been following Safe Space for a while - or know me at all - then you will probably know that I have been really struggling with my physical health. I've written a few posts about my journey on this blog which you can find here, here, here, and here.

It has been two and a half, maybe three years (I've lost count to be honest) of pain, extreme fatigue and utter frustration. I went from one doctor to the next trying to explain to them what was going on with me and how I knew something was wrong and I kept being dismissed, told to lose some weight, sleep more, eat better, do physio, etc. They tried to treat me with respect but mostly I think they thought I was just wasting their time. I had anxiety and OCD and depression and it was all just causing my body to hurt. So they sent me away time and time again. Sometimes with a referral, sometimes not. But at the root of it, I knew that they didn't think there was anything wrong with me.

Maybe I am judging them too harshly. After all, they only get to see me for ten minutes and when I'm around doctors I clam up, especially when they started blaming it on my mental health or weight. I would just nod and let them tell me that I need to exercise more despite the pain I was feeling which made it hard to get out of bed, let alone exercising!

About a year and a half ago I read somewhere how crucial Vitamin D and B12 were and how they could be a cause for fatigue. After having every other blood tests under the sun and all the results coming back completely average, I was told that "everyone in the UK is vitamin D deficient anyway so there was no point in testing for it." I was told that if I was still concerned in six months, to ask for a test then.

I did. I was told that I was probably just overweight and overworked and thus that was why I was feeling lethargic for that reason. I told them about my painful hands - because how could they be hurting if it was just because I was overweight - and that did seem to stir something in my doctor but instead of the blood test I wanted, she booked me in for an x-ray on my hands to check for arthritis.

But guys... I finally managed to get a doctor to agree to a blood test to check my vitamin D and Vitamin B12 levels.

And guess what?

I am severely vitamin D deficient.

The average person should have a level reading somewhere between 75 to 200. A reading of 25 is considered extremely deficient.

My reading came to 17.

17.

Do you want to know what I've found out about vitamin D deficiency?

• It causes unexplained fatigue
• It can make it difficult to think clearly
• It causes bone pain
• It causes joint pain
• It causes muscle pain and weakness
• It can cause weight gain
• It can make it harder to lose weight
• It can affect serotonin levels increasing risk of depression
• It can cause gut issues, especially concerning lactose...

Do you want to know something else?

I have all of these symptons. Every. Single. One.

I knew something was wrong. I knew it wasn't just because I was overweight because I have always been overweight and so why would my body suddenly be complaining about it all now? 

And because I knew it, I did not give up. I kept going back. From one doctor to the next, from one test to the next. I was determined to get the bottom of it and determined to prove the doctors wrong - it wasn't just because I was an overweight lazy person or because I ate like crap or because I was mentally ill. It wasn't all in my head. There was something wrong with me.

I have been told it will take a while for the supplements I now have to take to return my levels to normal but I have a hope inside of me that I haven't had for a long time. I believe that I can get my activity levels back up, my energy back up and be the person I used to be, the person I long to be again. It may take time, but I'm ready. I've waited three years, what's another few months?

So to end this post, I just want to say that if you have something ailing you, if you are certain that something in your body isn't right, please listen to your body and keep going to your doctor until they take you seriously and you get the diagnosis you need.

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Getting My Fitness Back Again... Maybe

If you've been following my posts here on Safe Space for a while, then you probably read this post where I discussed that my physical health isn't great, and this post where I talk about my current progress. This is something that I've been struggling with for a long time. It's hard to not be able to do all the things you used to do, not because you don't want to but because you're physically incapable of doing it. 

I had a bit of a set back since that latter post. I stopped exercising almost completely again because it became too much and too painful. So for the last few months I've been trying to get my fitness back. It's been a long and difficult progress and I am nowhere near where I wish I was and that keeps making me want to just give up and just be the lazy person my body is screaming at me to be. But I just don't think I can be that person. 

First of all I started walking more. I drove to the park and ride near work and then walked 25mins from there to work and 25mins back too. I did well with this until my muscles and joints started screaming for pain and I realised I couldn't do it every single day. So I changed it up. Walked some days and took the bus on others. I soon started to feel stronger but also still a little deflated that I couldn't do it every day.

Then I went back to the gym and tried pilates. The first session was tough. I almost cried in pain in the class so I just stopped that exercise and was just unable to finish any of the exercises they did. But I felt better at the end of it. But also exhausted and destroyed.

And I continued to feel that way for the next three days. I had the normal muscle pains but on top of it I had an aching feel that wouldn't go away.

But I went again. And it was tough, again, but I still managed to do just that little bit more. And this time the pain lasted a little less.

I'm now without a car so I've been walking to and from the stations everyday, I have plans to go swimming and go back to pilates but I'm also getting aches and pains on random days again. My arm has been a pain recently where it's been so painful that I couldn't sleep. It's a daily struggle but I know that I need to lose weight and if I want to do that, I need to exercise. One way or another. Just push through the pain.

So I'll keep going. But I will remember my limitations. I do not want to be bed bound again. I will not push it. But I will push myself just a little bit.

Do you have any exercising tips for someone who is often in pain?

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Old versus the Present

Let me set a scene for you:

It’s raining. Drizzling. My favourite. I’m walking home from town. It’s getting dark. I’ve got my hood up, headphones in my ears, music pumping around my head. I start to hum the tune of the songs, moving into singing whilst walking. I’ve got a definite spring in my step, walking tall and proud. I can’t feel the spotlight of the headlights of cars stuck in traffic on the road beside me, the people inside.

Old me would have been embarrassed that I had let some words slip out of my mouth whilst walking around in public. I would have been acting very British about it all; not enjoying rain at all, hating the miserable drizzle with a passion, pissed off my hair was getting damp and that people were staring at me, because it was unusual to see someone out in the dark, walking of all things.

Current me, this version of me; was enjoying the dampness of the air, the rain on my glasses, how good the music sounded in my ears, how much I had missed enjoying music. I was revelling in the fact that I was actually outside and feeling good about myself. I had even forgotten about my ostomy bag because it wasn’t tugging uncomfortably against my skin. I was enjoying myself, my life, in that moment.

Because, really, that’s all we get. Moments.

I have decided that I am going to enjoy the moments I get given because without warning they can be taken away from you. Either by yourself or something outside of your control. And all you can do is go along with them and roll with the punches. Find some laughs and enjoy those things you hold dear to you.

I am aware that this sounds very much like something you would say once you’d had a near death experience and I was by no means near dying when I was last in hospital in the summer but it is a reminder that bad things can happen and sadly you have to just survive them. It is instinct to fight for your life. I will fight for my life right now. I am happy and healthy. I am enjoying that, for the first time in forever! It has the potential, the possibility, to not last too long.

I say that not because I am expecting things to go wrong or to turn bad, but the past has left me a certain amount of scepticism around having had my fair share of crappy setbacks. 2016 has been one long battle with setbacks – one after a-bloody-nother – and finally we are seeing some clearing through the shitty trees. So, I continue forward, out of the forest of despair and pain, into the fields of hope and enjoyment.

New Louise, who is she huh?

Well, why don’t we find out? Let’s see if that diseased colon was really just holding her back. Let’s see what I can now do.

I’m ready.

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I'm not okay... but that's okay

I’m okay. I’m okay. It’s okay. I’m okay. I am a-okay.

Words I have been repeating to myself for two months now. Words to reassure myself that my declining mental health is okay. It is just a blip. I am strong and can fight back and it IS okay.

But it’s time to be truthful to myself. Because I am NOT okay.

My depression is getting worse. My OCD more debilitating and my anxiety more overwhelming. On top of that my physical health seems to be hitting rock bottom again too.

And it’s starting to become too difficult to stand up and tell the world that I am okay. Too difficult to even tell myself it.

Yes, I have good days and I cling to them with everything I have. But they are few and far between at the moment. And that is worrying.

So I need to stand up and shout that I am NOT okay. I NEED to be truthful so that I can break down the stigma surrounding mental health - it isn’t about always being defeated, or about winning forever.

But also because once I am truthful to myself about not being okay then I can start working on fighting back again.

Something I am now already doing again. A long uphill battle, again. But one that will always be worth it because life is a gift and I have to remember that it is precious. I am not going to let my mental or physical health take that away from me.

Not now. Not ever. 

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Life Turns On A Dime

There’s a saying: ‘life can turn on a dime’.

And in the past few weeks I’ve never understood this phrase more. I got dumped. I suddenly fell in love with exercise. My diet is literally the sort of diet I used to think was grim as hell. I am pushing myself to deal with my anxiety. From where I was a month ago my life is completely different in so many ways. And it shocks me how fast we can change the direction of our lives, whether it’s through our own choice or someone else’s.

And it got me thinking. If you could change anything about your life what would it be? Would you be healthier? Would you be braver? What would you change? What’s something you desperately want?

And then think about this…

What is it that is stopping you from doing it?

Yourself?

Others?

Society?

Now think again, if you take away the boundaries that YOU set for yourself. The boundaries that people who know you set around you. The boundaries that society sets…

NOW what’s stopping you?

I’mma guess nothing.

Because the only reasons we stop ourselves from doing the things we REALLY want to do is because we allow these boundaries to act as immovable walls.

NO.

PUSH THROUGH THEM.

Want to be healthier? Teach yourself self-love, self-compassion and treat your body like the temple it fucking is. People telling you that you’ll fail? You’re not good at sticking to things? Tell them to get out and go and sort their own problems out before they start passing judgement on you. Society telling you you’ll never be as hot as all the sexy women of the world? Even if you’re healthy you’ll never be like them? SCREW THAT.

DON’T LET ANYTHING STAND IN YOUR WAY.

So often we think we can’t do things because we tell ourselves we can’t and then people we know and society help validate those feelings of inadequacy. And then we think ‘I can’t do it so I’m not going to even try.’

For YEARS I’ve thought I’d NEVER be able to lose weight and that I’d just have to accept I’d always be fat. And people just sort of perpetuated those feelings…’you’re not very good at sticking to healthy eating’ etc. But I got an exercise bike, some weights and started to eat less processed food and suddenly I realise that I CAN lose weight. I CAN get fitter, stronger, healthier. And that’s because I smashed through the wall. When I was using my exercise bike, looking like a fat whale, sweat dripping off me and a red face I was like ‘this is gonna be pointless because I’ll never be sexy or thin or strong’ and then I was like ‘NO WAIT. I WILL BE. I CAN BE.’ And I kept pedaling and that was my metaphorical wall that I knocked down. I realised that the only thing that EVER stopped me from achieving what I wanted was ME. And my fear of being laughed at or failing or never getting there.

But you know, isn’t it worth trying? Isn’t it worth failing than never trying at all? Isn’t it worth taking a hammer to the wall? You might not get through to the other side first time but every time you try you make those bricks looser and soon you’ll find you get through that wall.

Make a decision, let life change on a dime for you. Do something you never thought you could.

You’ll surprise yourself. 

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Do I run or let it be? On Sport & Stagnation

This post has been inspired by some of my favourite female creators on Youtube (also Hamilton because I couldn't *not* wangle a lyric into the title). Although I have yet to read it the book Eat, Sweat, Play by Anna Kessel is the central focus of the videos I'm linking below and is what has sparked this whole discussion on Women and sport and the fractious relationship between them.

A couple of months ago Leena Norms posted this fantastically worded video about Eat, Sweat, Play and how it had made her evaluate when the impetus to play sports was superseded by the pressure to present the unruffled, pristine image of a young woman. In the last couple of days Rosianna Halse Rojas posted her own video with her usual brilliant eloquence that covers a far wider range of topics than I'm going to address below, and yesterday Hannah Witton posted her thoughts about the book and her experience with sports. I whole-heartedly recommend you go watch all three of these videos and if you aren't subscribed to their channels then I suggest you fix that.

When I watched these videos I started to think back to my own experience with sports and what has changed since I was at school. It takes no time at all to notice that currently I do absolutely *no* sports activities beyond the odd bit of walking I do going from my house to my usual coffee shop, a few months ago I even posted on here about how I'd put on weight over the last 18 months and what effect that was having on my self-confidence.

Oddly enough I mention in that post about how when I was younger that I didn't do much exercise to maintain my weight but the truth is I *was* far more active than I gave myself credit for. Over the course of my childhood and teens I did swimming, trampolining and cricket outside of school, and I have a folder full of certificates to attest to that. On top of that I used to play often on my estate with my then neighbour/friend after school and at weekends. We'd play tennis in our end of the cul-de-sac, I was constantly smashing the ball over nearby fences in my over-enthusiasm, we would ride our bikes, scooters or roller-blade around the estate and generally spend quite a lot of time outside.

That doesn't even begin to include my participation in PE over the course of primary and secondary education. My memory isn't that great about whether I was on any teams but I do know that during PE classes I was usually throwing myself into whatever sport we were doing with almost gleeful abandon. I wasn't *The* Sporty Girl (I can still tell you the names of the girls in my Primary & High school who were the "Sporty" ones) but I certainly took PE far more seriously than some of my classmates.

The enjoyment of PE, for me lasted all the way until the end of Year 11. I didn't get on with some of the girls in my class and this may have manifested in my competitiveness in team sports, but I was still weirdly cheerful about whatever sport we were doing in any given term. From what Leena & Rosianna talk about in their videos I know that my experience isn't necessarily the norm.

Yes this is me in 2011, ironically that is my old high school behind me. 

But the participation in sports dropped off sharply after I dropped out of Uni in 2010, I had been playing for Aberystwyth's ladies' cricket team and another ladies' team closer to home but after leaving my enthusiasm for playing slowly dwindled. When I moved in with my other half it became impossible to continue playing for my team when they were based on the Shropshire border and I essentially now lived two whole counties away. That was in 2012 and my cricket kit hasn't moved from my parent's garage since then.

Nowadays I am more likely to groan at heaving myself off the sofa to make another cup of tea, wince as my hips and knees make awful clicky-clunky noises when I crouch or stretch and get worryingly shaky after going up and down stairs several times in quick succession. The thought of going outside to deliberately exercise is laughable and all my sports clothes get used as lounge wear. I do often wonder if the fact that I'm not doing some kind of physical activity is actually making my knees *worse*.

How do I go about digging myself out of this stagnation then? For starters I'm going to get my grubby mitts on a copy of Eat, Sweat, Play and read the heck out of it. Then my next move should be to get my lazy arse up the road to the leisure centre that is almost literal spitting distance from my house and do SOMETHING whether that be swimming or some other sport they offer. I could start running in the park that is right behind my house, or do some damn yoga in my lounge if I didn't want to get that crazy.

I can't keep sitting still forever, so do I run or do I let it be? Get back on my feet and make the best of me? We'll have to see. #Move4Ham

(p.s. If you're not on the Hamilton fan-train I'm #sorrynotsorry for all the Ham references in this post, I'm literally listening to Non-Stop right now. Gotta write like I'm running out of time.)

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My Breast Cancer Scare

You might have noticed that I was pretty MIA on Safe Space last month, and if you follow me on social media then you’ll probably know why.

In May I had a breast cancer scare.

I knew that I wanted to write about this experience but I wasn’t sure what I wanted to write about exactly. It’s all still pretty raw for me emotionally and I don’t want to go into the ins and outs of what happened. I’m sure you can all imagine what it entailed: a lot of doctors and hospital appointments, a lot of tests, a lot of waiting for results and a lot of anxiety.

Thankfully a story about being diagnosed with breast cancer is not a story that I have to share with you today and I have now been given the all clear with no further tests required. So I suppose that what I want to talk about is how this experience has changed me and what it has taught me because it has changed me, significantly.

For the past year I’ve been working on battling my anxiety and fears with my therapist, this usually involves taking small but steady steps one after the other over a period of time. When I found an unusual change in my right breast it forced me to abandon the baby steps that I’d been working on and run up onto a whole other staircase right at the very top of the anxiety building. Me, the girl who struggles to leave the house alone, suddenly had to go through a very real and terrifying situation that most people would find hard to deal with never mind someone with severe anxiety. I definitely felt like I’d been chucked in at the deep end and I was petrified. I couldn’t sleep, I couldn’t eat, I couldn’t function. I spent most of May watching mind numbing daytime TV, seeing my counsellor and just trying to get from one doctors appointment to the next without breaking down, everything else went out of the window.

When I was given the final all clear, no further tests required, I was ecstatic. I’ve never experienced such pure relief and joy. Over the past month it felt like weight after weight was being piled on top of me and I was shaking and struggling to hold that weight, certain that the next weight added would be what made me crumble. Now I could finally put those weights down and it left me feeling strong. During this time I really got to know my own strength and just how much I can cope with so it suddenly became easier for me to pick up similar fears that carried the same weight and deal with them. I’ve since started to conquer some of my biggest fears like they’re a piece of cake.

When I was entertaining the very real possibility that I might have cancer the thought that kept running circles in my head over and over was but I haven’t even really started to live yet. I’ve spent so many years trying to protect myself from any harm coming my way by not leaving the house, carrying out OCD rituals and avoiding what my brain deems to be scary and unsafe places but in building a protective bubble around myself it didn’t keep something bad from reaching me but it did keep a whole lot of good things from touching my life.

Having this scare made me realise that the bubble I built around myself for protection hadn’t worked. I wasn’t immortal, I wasn’t immune from illness, and the safety precautions I have painstakingly taken for years hadn’t worked in keeping me safe. Danger had still found me, it had still worked its way into the bubble and in that moment the bubble popped. It was like being told that this miracle safety drug that I’d been taking was actually a placebo and with that knowledge the anxiety and depression came rushing back in waves.

After speaking to my counsellor I realise that at that moment when the bubble popped I had what they like to call “the breakthrough.” The reason why I was suddenly feeling my anxiety and depression so strongly again was because the usual unhealthy way I used to cope with it before like avoiding leaving the house and checking a switch was off a certain number of times wasn’t working anymore and so suddenly the anxiety and depression that I could usually contain and control this way was now flying around all over the place creating havoc in my brain.

My counsellor told me in our last session that now comes the hard part, now I have to learn to manage my mental illnesses in a healthy way and find new ways to cope now that the illusion that the bubble brought me has been broken, which is scary but also exciting. I had the realisation that I couldn’t protect myself from danger, that it’s actually out of my hands, that it doesn’t matter what I do to feel safe it actually doesn’t keep me safe and in knowing that there is fear but also a greater sense of freedom. Because if something as scary as cancer can find me in my own bubble then heck why not do what I want to do if I’m going to be in danger anyway? Why not go for a walk in the park? Or go shopping? Or try something new? If keeping myself safe is an impossibility then why not make my new priority doing what I want to do with my life so that next time I’m faced with my own mortality the first and overwhelming thought in my mind isn’t but I haven’t even really started to live yet because if this experience has taught me anything it’s that life is too damn short and I’ve already wasted so much time on what ifs? I’m one of the lucky ones and it is my duty to myself to make the most of the time that I have on this earth. To love deeply, to talk loudly, to live fully and to never let fear of the unknown hold me back again.

*

I wanted to end this post by highlighting a brilliant campaign called #FeelitontheFirst started by young breast cancer survivor Nalie Agustin that encourages people to check their breasts for any changes on the first day of every month. This allows you to become really familiar with what your breasts look and feel like so that you will notice any unusual changes if they should occur. Breast cancer can happen to anyone of any age, any gender and any lifestyle and is highly treatable if caught early. There is a lot of false information about breast cancer on the internet so if you find a change stay off Google and talk to your GP, you will never be wasting anyone’s time.

If you enjoyed this post, you can find more on: 

 Bloglovin' | Twitter | Jess Hearts Books

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Guest Post: The Rag Doll Disease by Hayley Steed

It was in my second year of university I started noticing my body struggling. The first thing was that I couldn’t use a straw, my mouth just wouldn’t close around it but I didn’t think it was a big deal. Then it was paralysis of my face – I’d be doing my makeup and I just couldn’t move my forehead or make my lips meet. It got worse when my speech started to slur and I began to choke on my food. I went to my university doctor about 5 times in 3 months, asking for help to be told it was stress, anxiety, migranes etc. It wasn’t until I went home to my local surgery that someone realised something was wrong. I was referred to a neurologist but the waiting list was 2 months – in that time I dropped to 6 stone from not being able to eat and I have vivid memories of having to leave restaurants with my boyfriend from everyone staring at me whilst I choked, to physically putting my fingers down my throat and picking out food I was choking on all whilst holding my breath.

My neurologist, Dr A as we like to call him, sent me for MRIs and CAT scans immediately before I was diagnosed with Myasthenia Gravis, nicknamed the Rag Doll disease. It’s an auto immune illness meaning severe muscle weakness. Essentially my body’s immune system attacks itself and sends antibodies to kill the messages from my brain to my muscles, so they just don’t receive the message and don’t move. That’s anything from my eyes drooping, to not being able to smile, to my swallowing muscles failing, to my lungs struggling. Dr A wanted to admit me but only let me go home as my Mum is a registered nurse. He told me to cancel mine and my boyfriend’s first holiday together which was just 3 weeks later, and cancel the trip to America my family had planned for several months later in the year, which was when I knew how serious it was. One of the hardest parts still was sitting outside that hospital and ringing my boyfriend to tell him I was ill.

I started on medication and in December 2013 at the age of 20 I had a transsternal thymectomy (they cut open my chest and took out my thymus gland which had a tumour.) I was his youngest ever patient and they told me it had 1/3 chance of making me slightly better, but not curing, 1/3 chance I’d be exactly the same and 1/3 chance it’d make me worse. It’s such a rare disease, they know so little about it. They don’t know what causes it, or how to really fix it. Either way I’d have the scar which runs the length of my breastbone and three ‘bullet’ hole scars underneath from where they fed drains into my lungs, which they took out when I was awake two days later. The only thing I’m going to tell you about that operation is that because my illness is all about muscle weakness, they couldn’t let me have any painkillers before I woke up. Usually they’ve already hooked you up to a morphine drip so you wake up with painkillers inside you – I didn’t have that in case it meant I didn’t wake up. I woke up feeling the full effects of the operation, screaming.

A couple of months before my 21st birthday they found a blood clot in my leg so I was on more treatment for that, meaning I was not allowed to drink for my 21st. I nearly had to cancel my birthday trip to Rome but I pretty much told them that wasn’t happening unless I could die doing so. I went. I’ve had two relapses, one when my eye closed for about 2 months, I’ve no idea why. I had to cancel all my work experience and just stay at home for that time. The other was last summer. I had a week where I kept waking up in the night feeling very phlegmy, to the point I couldn’t lay on my back because I felt like I couldn’t breathe. Then one morning I woke up and I couldn’t breathe standing up. I went to A&E, was met by ICU and strapped up to IVIG, a drug which essentially restarts your immune system. I had that over a course of 5 days which left me exhausted but it worked. That’s the only time I’ve come close to dying from it. (I had to cancel another holiday me and my boyfriend were supposed to be going on).

Something that came alongside the physical illness, was the anxiety. It’s better now, but for the first couple of years of diagnosis, I just wouldn’t go out. I was terrified it would make me more ill, or if I went for a meal, I would choke and either everyone would stare or I’d die. I didn’t like people seeing me when they knew I was ill because I thought they’d be looking for signs of it and I didn’t want to see anyone who didn’t know I was ill and have to explain why I couldn’t speak properly all of a sudden. Now, even though most people know I’m ill and I rarely choke at meals, I still get panicky when I’m going to events or meeting an author that my speech or face will just drop and they’ll wonder why. It’s a vicious cycle because the anxiety and stress makes my symptoms worse. Sometimes I try to joke about it so if I’m with my friends for a special occasion I always take my pills and say ‘if we’re taking photos, let’s do it now whilst my face works’. My worst bout was after my second relapse – I’d wake up every morning in a hot sweat, panicking in fear of waking up and not being able to breathe again like before.

My friends now tell me how snappy I was after being diagnosed and I was – I was angry. I was angry at the hand I’d been dealt, angry that I wasn’t like them anymore, that I couldn’t be ‘normal’ and angry that none of them seemed to think it was a big deal. An illness like mine, one which can’t be cured, brings a lot of frustration with it. It dictates every moment of my life – I decided I still wanted to work, which I do, and to live my life, which I do. But if I have an event in the evening after work, it will tire me out for the next few days. I can’t go to a different bookish event each night like I wish I could, I have to carefully plan. I can’t go to bed late, because if I’m tired, my muscles will be so much weaker. Numerous times I’ll be mid-way up a flight of stairs and my legs will give way – I just have to sit and let everyone walk by me until I’ve rested enough to go again. Most of the day I can’t smile, because my cheeks aren’t strong enough. I frequently look liked I’m mid-stroke and my medication heavily increases my risk of cancer. Rest is the biggest word in my life and it’s so frustrating, as a 20-23 year old to be told you can’t when you have always been able to and that’s always what I’ve struggled with most. If someone who knew me in my pre-illness years saw me now they’d be shocked. I used to love going out, I loved drinking and clubbing, I was loud and brash. I’m still quite brash, but if I go out, which is rare, I don’t drink because it’s a depressant and makes my muscles weaker. Even without alcohol, I can’t do stuff every day like ‘normal’ people can, I always have to consider what will tire me out, what will be too much first. It’s constant.

My scar then and now

Most importantly I think we need to stop putting illnesses on a scale. I had so many comments after being diagnosed like ‘at least it isn’t cancer’ or ‘at least it isn’t a brain tumour’ and yes, I’m so thankful I haven’t had to go through either, but does that make mine any less valid or difficult to live with? My own friends thought my illness wasn’t a big deal, until they nearly saw me die from it. But people can die from depression, from cancer, from Crohn’s, from epilepsy, from anxiety. So many people have a story like mine, of struggle and pain and difficulty. Mental and physical health don’t need to be measured or met with judgment of how bad they are.

This has probably been a quite depressive post so I’m going to list some good bits:
• It’s been nearly 3 years since I was diagnosed and I’ve gone from 40 pills a day to 8. I’m stable and have no signs of relapsing anytime soon *fingers crossed*.
• This was all going on in my 2nd and 3rd year of uni. I’d get extra time to finish my work after my operation and blood clot in 3rd year, and I got a First. I’m damn proud of that.
• I’ve been on several fantastic holidays which I haven’t had to cancel including driving the coast of California with my family and Rome for my 21st birthday.
• My incredible boyfriend has been with me since day 1 and has stayed throughout the most difficult times, even when I was freaking out about my ‘ugly’ scar.
• I’ve never been so close to my family – I had to call my Mum at 3am from my bed after coming home from the op to come and spoon feed me morphine because it hurt too much to move. After an experience like ours, you value everything so much more and we’re pretty much best friends. • I’m really happy – I got a job in publishing and my illness is settled enough to live with. I’ve got used to my life being toned down.
• Since my op I have skydived and abseiled to raise money for our charity – Myaware. This year I’m taking part in an attempt to beat a world record of skydivers and my Mum is jumping with me. If you want to sponsor me you can find my page at www.justgiving.com/HayleySteed3

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Safe Space Talks Contraception

Deciding what kind of contraception to go on can be tricky and different women prefer different things. Today the Safe Space team are bringing you their contraception stories sharing what did and didn’t work for them so that you can make an informed decision about what you might like to try out and what might work best for your body. Please note that this is just our personal experiences, we aren’t medical professionals and it is always best to speak to a nurse or your GP before deciding on a contraception method.

Jo: I suffer with really severe period pains. After one type of medication failed to help, my doctor prescribed me the contraceptive pill Cerazette. Cerazette is a mini-pill, or a progestogen-only pill (POP), as opposed to a combined pill, which contains progestogen and oestrogen. I was prescribed a mini-pill because I also suffer with migraines, and my doctor believed a combined pill would affect them.

The mini-pill is a pill that you take every day, as opposed to stopping for a week with a combined pill to have your period. The mucus at the neck of the womb is thickened when taking the mini-pill, which makes it harder for sperm to make it’s way to the womb to fertilise an egg. Cerazette contains desogestrel, a synthetic progestogen, which stops ovulation in 97% of periods, meaning in most cases, an egg won’t be released, so my periods, for the most part, will stop. There may be some irregular spotting when you first start taking it, but this is perfectly normal. Although I’m not taking Cerazette for contraceptive reasons, it is a 12 hour pill; you’re supposed to take your pill around the same time every day, but if you forget to take a pill, you must take it within 12 hours of when you were due to take it. If you take it within that 12 hour period, you will still be protected and no other form of contraception will be required, including emergency contraception. However, if you don’t take your pill in the 12 hour window, you should take your pill as soon as you remember, and then as normal, but for two to seven days you won’t be protected, and should use a condom for that time, while using the pill.

I’ve now been taking Cerzette for five weeks. It’s around now, when my next period would have been due had I not been on the mini-pill, that it’s likely I’ll see some spotting, but this has yet to appear. Of the common side-effects of Cerzette, I’ve only really experienced getting a few spots. The leaflet that came with Cerzette actually says “acne” is a common side-effect, so I was thinking I’d get really bad skin with obvious, very sore spots, but that hasn’t been the case. My spots are very faint, more something I’d notice than anyone else, and they’re gone after about a day, with maybe some new ones in other areas of my face. I’ve not even had to bother with medicated concealer, the spots are really nothing to worry about.

It’s around now I would normally start suffering with PMS and sore, swollen boobs, but Cerzette has put a stop to both. So far, so good! I’m really happy with how Cerzette is working for me, and if I have a similar experience with it as Faye (see below), I’ll be a very happy lady!

Debbie: Like many of the others, I was first put on the mini-pill Cerazette when I was about 14. I’d just been diagnosed with polycystic ovaries (PCOS) and it was meant to help relieve some of the symptoms I’d been suffering with, such as period pain and body hair. Which it did, a little. But I dreaded having a period every 4th week, and it seemed to come around far too quickly.

I can’t remember exactly when or why my doctor suggested it, but about 4 and a half years ago they suggested having an implant. An implant is approximately 4cm long, and inserted into the back of the upper arm, and works by slowly releasing progesterone. It’s said to be more than 99% effective against pregnancy. The main bonus for me is not having to take a pill everyday. Thanks to my weird work hours and London life, it was getting harder to remember to take them, especially at the same time. Furthermore, I rarely get periods anymore, usually just under a lot of stress, which I guess causes a hormone imbalance. This is a side effect that a lot of people experience, though some may have heavier periods instead. This was a huge relief to me as period pain is the worst. The implant lasts for 3 years, and I didn’t hesitate at all in getting it replaced last year. While it’s not really an option if you are considering having kids, for me it is the perfect solution right now!

Ray: I was only on the mini-pill Cerazette that Jo’s already talked about for about 5-6 months so this’ll be rather a quick segment. I started taking Cerazette shortly after getting together with my current partner in June 2012 since I’d been single for 18 months prior to that so I thought if I was going to be sexually active again it might be worth giving it a try. The lack of a period break was also a nice incentive to try this pill. I didn’t used to be able to swallow pills but if I was going to be on a contraceptive pill it was kind of important that I did actually take it so I figured out how I could get the pill down (dry-swallow a la House with water to chase it) and phone alarms to remind me what time I should have it. I have to be honest my memory is pretty shoddy about how things were while I was on Cerazette but I vaguely recall that my periods never properly stopped and I spent a lot of time grumbling and cursing that I was bleeding longer and more randomly than when I wasn’t on the pill. Whether this would have eventually stopped I don’t know because unfortunately I ended up having what is probably an uncommon reaction to taking the mini-pill in December 2012.

I did already mention this in my Liveblog your Period post, but for anyone who might not have seen that - I had a bad reaction to Cerazette, my legs came up with a dozen or so weirdly swollen lumps which really flipping hurt. It was so painful to walk and bend my knees that I had to use crutches and in the end had about 6 days off work because I just would not have coped working at school all day. The doctor diagnosed me with having Erythema Nudosem and since I wasn’t on anything else which could have provoked a reaction my Cerazette pill was deemed the culprit and I came off it. I’d rather have the periods. Since then I’ve not tried any other form of contraceptive pill or implant partly from the worry that another method might still cause the same reaction. For me this isn’t too much of an issue as my periods are manageable but one day if I do decide to try some other form of contraceptive I would probably need to consult a doctor first to make sure I found an option that would work for me in the long-term.

Faye: I first started taking a pill when I got my first serious boyfriend at 17. It was only after I was on the pill that I realised how frustrating and irregular my periods were. I was put on Microgynon and sent on my way. This is just one of many combined pills and it is the first pill that doctors are likely to try you with. It has been so long with this pill that I don’t remember why I changed to something else but I know I did. The second combined pill I was on, I’ve already forgotten the name of but that also didn’t work. I was then put on Femodene. For a long time this pill worked for me. It regulated my periods for the first time ever and I had very little, if any pain. I was, in all honesty, over the moon. But then my body started to reject the pill. That’s the only way I can describe it. My periods became heavier, the pain came back tenfold and I started to have the worst mood-swings in history. On top of that, I had a three-week pain cycle and just one week of relief every single four-weeks. It was not a good way to live life. But when I came off the pill, it was still awful. Really painful, really heavy and completely irregular. After lots of trips to the gyno and some tests, the doctor finally prescribed me Cerazette, which as you know now is the mini-pill and I am back in heaven. I haven’t had a period in two years. I have had no pain in two years. I have had no mood-swings in two years. I feel like a normal human being every single day. There have been a few side effects, such as headaches, but I’m prone to them anyway, and I’ve had some “mini-periods” as I call them, when I miss pills (because I am super forgetful) at the wrong time in the cycle, but honestly, I cannot describe how pleased I am not to have periods and period pain anymore.

Joy: We never talk about what a “normal” period is, so it wasn’t until I was 21 that I knew I needed to do something. Every time my period came (which varied between every three and seven weeks), I was in agony to such an extent that I could do nothing. I bled so heavily that I would need to change sanitary towel every hour to begin with, I couldn’t get through the night without leakage and I would have to postpone any social activity that coincided, which was difficult given my periods were so irregular. As I was due to go to university, I needed something that would make my monthly experience tolerable and a Google search indicated a GP may prescribe the pill. After a short appointment where I explained my problem, that was indeed what happened.

The first pill I was put on was, like Faye, Microgynon. It was a miracle cure! I immediately went to four-weekly cycles, absolutely no pain and a manageable amount of bleeding. I only wished I had done something sooner. This pill worked for five years without a problem. Occasionally I would experience a little bleeding mid-cycle, but I was assured that this was okay. However, after those five years, Microgynon was no longer effective. I started to bleed a couple of weeks before I should have and for far longer than usual. My GP told me to keep an eye on it, but indicated that Microgynon is usually prescribed to people early on and it may be that I required something with a stronger dose of hormones. After three or so months of continued problems, I asked for my pill to be changed.

I can’t remember what the next pill I was prescribed was or, indeed, the one after that. Changing my pill a couple of times failed to ease the problem of bleeding too early and I was growing worried that there was something sinister happening in my body. However, I was then prescribed my current pill, which is Lucette. I take this for three weeks and then have a week’s break before starting again. It is in this break, theoretically, that I bleed. I have had a couple more occasions of bleeding early, though to a lesser degree than with previous pills. When I mentioned it to my GP she said that wasn’t the norm, but it does happen and it doesn’t mean that anything is wrong, which was a relief to hear. As long as my periods are fairly regular and lack the immense pain and heaviness of before, I’m grateful. Taking the pill really has made a difference.

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Guest Post: Going Braless by Caitlin Lomas

I need to start this post with the disclaimer that I have small boobies. If you read this and think "what does she know sitting there with her B cups" I am aware this whole process has been easier because I have a small chest. And I am by no means saying everyone should stop wearing all kinds of bras, more asking you to consider WHY we wear underwired, padded, push-up, cleavage-boosting ones. Are we all on the same page? Good. Off we go, then.

My first ever bra was, I think, a 28AAA. Seriously. It wasn't even a bra; it was a bra-shaped crop top. My mum got it for me because, at 13, I really didn't have any breasts at all but felt self conscious about not wearing a bra in P.E; my crop tops felt childish. Like a lot of girls, I think, I grew up thinking breasts were the ultimate sign of femininity and that NOT having breasts meant I was less of a girl. Eventually I got enough in the breasticles department to fill a cup that wasn't a made up size and off I went and I never looked back.

 A few years ago I finally came to terms with how much I fucking hate bras. They've never fitted me properly even after being professionally measured, they always seemed to make my boobs hurt all the freaking time and despite being fairly thin I always got that weird mini fat roll between my bra-encased breasts and my arms that made me feel ugly and fat and self conscious. “But I can't stop wearing them!” I thought. “That would...just be WRONG. Everyone wears a bra! What would people THINK. What would they SAY.” I struggled on. Then, just over a year ago I decided I didn't give a rat’s ass what people think. I’m uncomfortable enough in my body from the pain of my chronic health condition, without voluntarily adding extra discomfort. So I took the plunge and I did not wear a bra. And no one said a goddamned thing.

Without a bra, I felt free. My boobs stopped hurting. The level of comfort I now experienced was just...indescribable. But more than that, I felt powerful. For so long I wore a bra because I thought that, as a woman, it was what was expected of me. It was part of the social contract. And going against that, and feeling better for it, made me feel strong. I started to wonder why I'd even started wearing one in the first place. I'd not needed the support because of back pain, so why had I bothered?

Because I felt like I was supposed to. Wearing a bra was a sign I was a woman, like starting my period or growing pubic hair, it was a sign that I had Made It. I was part of the club. And I started to feel like the only reason I ever wore a bra was, not because I needed to, but because everyone else needed me to. Because it was expected that my breasts sit at a certain place on my chest and be a certain shape and not move very much and, heavens forbid, never suggest I have nipples. And the more I thought about it the more I felt I'd been duped. I'd been wearing these godforsaken things for a decade and I really didn't need to.

Aside from this, there’s also the issue that the fashion industry expects your breasts to be within a certain size range, and if yours fall either side of this range, you’re punished by being offered bras that aren’t pretty, or sexy, or whatever it is you like to see in a bra, and instead are boring (or ugly) and often expensive, with limited options on offer in limited places. No fair.

Obviously, bras have many practical applications. I know many of us breast-bearers opt for bras for a range of reasons, and going totally braless is not necessarily an option for all. I do think that when we think 'bra' we think of the underwired variety, probs with a bit of padding for maximum boobage and to guarantee nipple coverage on even the coldest of days, and designed to hoist our breasts up to their socially desirable position about an inch below our chins. Boobies are not supposed to go this way. If they were, that's where they'd be already. The point of this post is more to get us to think about what we put our boobs in, rather than just reaching for what we've always reached for. There's bras without underwire, sports bras, camisoles with built-in support cups. Regular camisoles. And yes, going totally braless.

So next time you try on a totally amazing top or dress, but are going to leave it in the changing room because "I can't wear a bra with it" try it on without one. I bet you look bangin'.

For more from Caitlin follow her

 

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Hi, I’m Jess and I’m a Hypochondriac

Admitting to you that I’m a hypochondriac is a hard thing for me to do.

When I talk about my anxiety, I’m fine.

OCD? Not a problem. 

Depression? Sure thing.

But it’s hard for me to sit here and fess up to being a hypochondriac and that’s because being a hypochondriac carries a bad rep.

Over the years I’ve been called a “drama queen” and an “attention seeker” by my nearest and dearest. I’ve been told to “get a grip” and that I need to “stop worrying about nothing.” I think it’s hard for me to write this post because hypochondria is an anxiety disorder that’s hardly ever spoken about and therefore has a long way to go in fighting the stigma surrounding mental illness that we’re just starting to break.

In contrast to what has been said to me, my hypochondria is something that I live very quietly with, much more so than I live with my other mental health problems. Unlike common perceptions regarding hypochondria I rarely go to the doctor with my worries and I hardly ever discuss my fears with anyone for fear of being called silly.

For me, living with hypochondria is losing a whole night to googling symptoms and reading about various illnesses online spending hours trying to self-diagnose. It’s lying awake terrified that I’m ill or dying. It’s having intrusive thoughts about all of the big scary illnesses out there and the chances of me one day having them. It’s about worrying that even getting help for these illnesses, like having surgery, carry a risk of death. Truthfully, having hypochondria is terrifying and something that I often sit with alone.

In my experience, when people think of death they see it as a far off thing that won’t happen to them, or at the very least is something that they won’t have to face for a long time. I’m the complete opposite. I’m very aware that death is a part of life and that one day I will die and so will everybody that I’ve ever cared about. I know that death can sweep in and happen unexpectedly when you’re not looking and so I’ve made death my personal enemy.

I try as hard as I can to fortify myself and those I love from death by being a hypochondriac, by worrying and thinking of the worst possibility so that I can act quickly. I’m on constant high alert for the grim reaper knocking at my door.

There are so many health warnings these days, everywhere you look from posters to TV adverts. Now I’m not saying that’s a bad thing, I’m sure these advertisements save lives. But when you’re a hypochondriac being reminded that 1 of 2 people in the UK will be diagnosed with some form of cancer during their lifetime is not helpful. I look at those odds and I look around at the people I love and a wave of paralysing fear washes over me.

Every. Single. Freaking. Time.

And what’s worse is that I know that dying is inevitable and that for all of my worry and trying to protect myself and those I love against it ultimately there’s nothing I can do to stop it when it does finally decide to arrive.

Because as well as worrying about my own health I also am a hypochondriac when it comes to the people I love. My family get so annoyed with me when they’re ill. If they have an illness for longer than two weeks I’m certain that they’re going to die. I will nag at them to see a doctor and spend countless nights until the illness has passed crying myself to sleep and having panic attacks because I’m certain that something is seriously wrong with them.

In society hypochondria is a mental health condition that is still very much seen as a joke. It’s perceived as self-indulgent, dramatic and pathetic but in reality it is a terrifying condition to live with. On a regular basis I convince myself that I am ill and that I am going to die. I may not be physically ill but mentally I am there living it and experiencing it. I believe it deeply and wholly. To me, in my mind, I am sick and I am dying. Fact. And it’s not until my symptoms subside or I get a doctor's diagnosis that I believe otherwise. It’s petrifying and mentally exhausting.

Hypochondria is not a silly, frivolous or indulgent condition to have. It’s no fun to live with and is certainly no joke to be laughed off. I hope that one day it will be seen as the crippling anxiety disorder that it is and treated with the respect it deserves. But until that day I refuse to be ridiculed for a condition that I have as little control over as my OCD, PTSD and Depression. I refuse to be made fun of and refuse to believe that my very real fear is trivial, petty and insignificant.

My name is Jess. I am a hypochondriac and I will not be ashamed.

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