Remaining Positive in the Face of [Chronic] Illness

Once the battle of being diagnosed with an illness, be it chronic or not, has passed – with elation, fear, and exhaustion – it is not long before the next battle comes.

For me this was “finding my feet”. I spent six weeks or so in hospital over the space of four months, as we sorted out my medications and relieving my symptoms. Once I was on an upward path, everyone began to tell me this little nugget of wisdom:

“You've got to find the positive strength to get through this”

Hear it a few times, you take it on board and try your best to be positive. All of the time. But you forget you are fighting your own body, draining yourself of important and fundamental energy that healthy people just don't need to do or even contemplate doing. And on top of that, you feel somewhat hard pressed to be positive. Even when things go wrong. When your meds start to make you feel worse, you try and ride it out and hope it gets better; you don't want anyone to think you're not being positive about this terrible illness you have.

I tried about five medications in those early days without success. In this period, I hid away from people, quite easy when you're stuck in hospital. On those multiple admissions, my doctors tried hard to figure out what was now causing me a problem, a pain, a side effect; just why I wasn't getting any better. Then I received funding for a biological drug called Humira and it seemed to change everything. Once I could do my own injections at home, I had my disease staged with a MRI scan and I went back to work. This is when the big ‘push’ of practically everyone I saw telling me “how brave I was” and how it was “important I just tried to be happy and remain positive” throughout all my “bad spells”.

I didn't have bad spells.
I didn’t feel particularly brave.
I wasn't happy AT ALL.

This was the start of 2012. I was trying to find out who I was in a time where everyone wanted me to be happy that I was alive and well.
My bad spells were masked by my medication. It helped me a great deal but it didn't fix me. It certainly would never cure me and I still felt awful a great deal of the time.
My bravery? I was utterly heartbroken as I mourned my old, wonderful, normal life that was now just an endless barrage of tests, managing my diet and tracking symptoms. Being in hospital for so long, being so unwell, made me paranoid about when I actually did feel well – Me? Well? Something must be wrong! Ensue panic!

I just wasn't happy at all. I struggled to find my own new identity in being sick. I couldn't deny what I had or the simple fact that I had it, so I sat and thought long and hard about what I wanted to do. What I wanted to be, who I wanted to be. I read books, articles, spoke to other patients, confessed a lot to my counsellor and slowly I came around. But I struggled a great deal – and to a certain extent, still do – with being told to “be happy”. I don't think it's necessarily that simple, nor is it that easy to do. And why can't you have some time to be angry about things, about this type of thing?

It is not easy to be happy all the time. It is incredibly hard and draining to be positive all the time. I appreciate good advice but not when it is being constantly rammed down our throats; from doctors, medical staff, loved ones, it’s all said with that compassion that leaves you feeling grateful, although through gritted teeth. I don't feel as if I can be unhappy about my health. Especially now in my current situation; going through two major surgeries in four months, coming out with an ileostomy and a forever changed digestive system. Let alone how my scars and my actual ostomy makes me feel and look. I can't always be smiling about it. I need to be angry, some times.

So, remaining positive; harder than it seems. More complex than first meets the eye. Not always for the best.
Please, let us be negative and grieve for a while.
Chronically ill people are the strongest and most resilient people I know. I'm sure that's not just down to being positive, they get angry too.
Let us. We always come back to being happy and finding the funny side. Especially when it comes to bowels!

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Time Out

I am a person who likes Doing Things. This has been true for many years. My mum always used to wonder how I can manage to fill my time, especially summer holidays. I was always busy, never really bored. Even though I have brothers and sisters, I was very good at entertaining myself and finding something to do. Even if that something wasn’t useful. Sims 2 anyone? 

I recognise this in myself as a good trait. It means I am more inclined to try new things, to explore the world, go to events by myself and generally whittle away the hours in contentment. 

My home for the next three days. Aaaaand relax. #Portugal #travelling pic.twitter.com/Gn1taFbzNQ

— Debbie (@SnugglingonSofa) October 18, 2016

Lately however, its become more problematic. I have a job which takes up quite a lot of my life, and more recently its become a little unbalanced so I’ve dedicated more of my life to work. Which is fine, except something else has to give. There is no wiggle room. But the problem is, I really like my life. I enjoy spending time with friends, eating out and going to the theatre and cinema, travelling and going to new places. I’m also working on my 30 Before 30 List. 

So as a result, my juggling became more and more chaotic until I started dropping balls. My mum got upset that I wasn’t talking to her much. Friends were annoyed that I kept cancelling or disappearing. I was trying to run (literally, 5k) on very little sleep. Consequently, my mental health suffered. My anxieties shot through the roof. I was stressed out and ironically I didn’t even have the time to plan how to deal with it. 

As many of you know, lists are my thing. I love a spreadsheet and a to list. But sometimes, I forgot that life shouldn’t be one giant task. I was so busy ticking things off that I forgot to actually savour the moment. While its great to have lots of amazing stuff planned, sometimes spontaneity is okay. Not doing anything is also okay. 

Luckily for me, work is going to calm down a little for the next few months. And of course I am seizing this opportunity to get lots of things done (like finally teaching myself to cook!!) but I also recognise the need to look after myself too. Because I haven’t been, and that needs to change. There is no point accomplishing things if I am tearing my hair out whilst doing it.

So right now, I am curled up with a blanket writing this blog post. And when its done, I’m going to treat myself to a film. No social media, no blogging or net surfing or multitasking. Brains deserve a break too!

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All The Single Ladies

Halfway through this year I found myself single. Not through my own choice I might add, but I was suddenly thrust into a bubble of uncertainty and complete confusion about what to do with myself now a whole part of my life had been shaken up. And it took a while before I began to settle into single life and remember why being single is actually quite brilliant. 

So often being single is seen as a negative thing which I’m learning couldn’t be further from the truth. I’ve not spent much of my adult life single; I was in a relationship until I was 18 and then started a new relationship when I was 21 so I haven’t really experienced being single as a ‘proper’ adult. (And by ‘proper adult’ I mean 21+) At first it felt like a burden and a horrible cross to bear, who wanted to be single and face the prospect of never finding someone ever again? Not me, that was for sure. However since then my view has changed dramatically and I couldn’t be less bothered by my singleton status.

I thought I’d compile a list of all the great things about being single to show that it isn’t all doom and gloom:

- You don’t have to be responsible for anyone but yourself
- You can do what you want, when you want
- You don’t have to worry about someone else’s wellbeing all the time
- You remember that you’re actually a pretty awesome human being on your own
- You can flirt to your hearts content
- You can starfish in bed all night long
- You don’t have to worry about arguments or disagreements over petty things
- You can listen to what you want and watch what you want without criticism/annoying someone else
- You fall in love with yourself all over again
- You don’t have to rely on someone else to please you in the bedroom
- You don’t have to spend money on someone else
- You can be the best version of you

I guess some of these make relationships sound like a negative thing and that couldn’t be further from the truth, but there is this assumption that relationships are the best thing in the world and if you don’t find the right person and marry them then you’ve somehow failed. WRONG. As long as YOU are happy then you can be whoever you want to be and be with whoever you want to be with, if that’s anyone at all.

Right now I feel such a freedom and happiness being single and I can’t imagine getting into a relationship again any time soon (never say never etc) as right now I feel so balanced and happy with how my life is. I’m enjoying having the freedom to find myself again and fall in love with myself both emotionally and physically. It’s so important to get to a stage where you love yourself because if you don’t then you run the risk of getting into a relationship where you accept less than you deserve and you should never sell yourself short when it comes to love. Everyone deserves someone who loves every single atom of them; who loves them with a ferocity that can’t be matched and would do anything for them.

I’m excited to move forward with my life as a single woman and I can’t wait to see what the rest of my life brings! 

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Clean Freak... Or Maybe Not.

One of the things that really grates on my nerves is when people trivalise and normalize OCD. It has now become an acronym that everyone has heard of and throws around as though it isn't a life-crippling illness that can change someone's well-being for the rest of their lives. Sentences about how people need things to be a certain way and therefore they are "a little OCD", are so incredibly harmful as it diminishes the struggle that everyone who actually has OCD faces every single day. OCD is not just about wanting things to occur in a certain way. It is about not being able to function if it isn't a certain way.

Another common misconception about people who have OCD is that we're all clean freaks. And that if you clean your house a LOT, you are obviously OCD. Seriously? I cannot even find the words to describe how much this one strikes me to my core. It is because of this view of OCD that I never believed I had the illness because I am a messy person. Lazy, is often the word used to describe my attitude towards my room and cleaning it. Thus I was pretty certain that I couldn't possibly have OCD because of this. OCD's were perfectionists in my head because that is how everyone portrays them.

And it is wrong.

And damaging.

I cannot even imagine what my life might have been like if I'd been diagnosed earlier. If I'd understood what OCD actually was then maybe I could have gotten help sooner and I wouldn't be struggling so much today.

But the media and society did not help me with my diagnosis. And I am so worried about everyone else who probably needs help but just does not understand because their OCD isn't what everyone says OCD is.

So in this post I also want to break down this misconception about cleanliness. I want to try and explain how I view cleanliness and how much I struggle because of it.

If you've been following this blog for a while then you will know that I have difficulties with food. That I have difficulties with my hands and constantly have to clean them with hand sanitizer or hand soap to deal with life. It was actually my issue with the cleanliness of hands that finally had me going to the doctors to find out that I did have OCD but it is actually only one of my issues, of which I have now realised I have many.

So, I'm sure you think that because I wash my hands a lot, that I am a clean freak.

But you're wrong.

And the main reason for this is that I am actually afraid of cleaning products.

I'm just going to let that soak into your mind for a moment.

One of my fears is that the cleaning products I use to clean the germs, that I am terrified of, will actually cause me to get ill and die.

Not a rational thought, right?

And yet, have you ever looked at the back of a bottle of cleaning spray? Have you read the warnings? Don't let it touch your skin. Wash your hands immediately. If you drink it, go to the hospital straight away.

All warnings which my brain have taken and blown out of proportion.

Because that is what my brain does best.

Last week I was sick on the carpet in my flat. Naturally I needed to clean it up. Had to clean it up because it was gross and I felt dirty and I wanted it gone. But to clean it up, I first had to buy disinfectant - because I didn't even have any - and then I had to wear three pairs of gloves to wash the carpet with and then I had to shower straight away. And, even though it is now clean, I am still having trouble walking on that patch of carpet. So much so that I have had to put a rug down so that I am not walking on that bit of carpet. The problem is that I am still afraid that the disinfectant will kill me and that it hasn't worked in cleaning the germs that the sick left behind.

And this is just one example of my cleaning product issues. Don't even get me started on bins.

So no, OCD is not just about being a clean freak. OCD affects everyone differently and we  really need to stop normalizing and trivializing it because being clean is actually a very normal thing. Cleaning because you have OCD is not.

So if you hear it happening around you, a joke or a comment or something that makes OCD seem like an easy thing to deal with, for my sake and for the sake of people you may not even realise have the illness, could you try and correct them? Explain that unless they can't function until they clean or tidy, then they do not have OCD and need to stop using the acronym as a throwaway comment.

Please.

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There's something I've been meaning to mention...

So I vaguely hinted several months ago that I wanted to write a post related to Faye's post about her asexuality but then didn't actually write that post for whatever reasons (usually because I'm awful at getting my posts done ahead of when I'm meant to be posting and I didn't really want to rush this one). Yes I may be writing this at 11pm but I can't avoid doing it any longer.

Several of my friends already know this about me as it's something we've discussed at several points over this year, I've gotten more comfortable with owning this aspect of myself although it's probably not something I will be explaining to my parents any time soon because they will likely be a bit confused as to what it means for my long-term relationship. But I digress.

I'm Demisexual. Also Bi (whether sexual/romantic I'm not entirely sure).

Image source

Yeah. That. If you don't happen to frequent the internet bubbles that I usually inhabit, Demisexuality may not be a label that you've come across before. Simply put; if Asexuality is the absence of sexual attraction/desire then Demisexuals reside partway along the spectrum back towards hetero/homo/bi/pan-sexuality. For a super cool comic on Asexuality here's Alice Oseman being staggeringly talented as always.

Demisexuals like me tend to only feel sexual attraction to people we have strong emotional bonds to, e.g. people we're in romantic relationships with. For me it also means that even within a relationship I don't often feel the desire for sex (with a partner anyway but that's another thing...). Until recently this lack of desire bothered me because I thought something was wrong or defective with me that I didn't want to have sex as often as I thought "normal people" should.

I'll be honest, I was fairly late in ditching the imaginary V-card. I was not far off 20 when I "fled the nunnery" as I termed it at the time despite being two and a half years into what ended up as a three year relationship (first of only two long-term bfs, nearing four & a half years with Le Boyf). Not that we were chaste little chaps for all that time but we didn't actually do the entire deed until 2010 and after that no more than a handful of times before we split up.

Then followed 18 months of singledom. Which was fine. When I met for drinks with some school friends during this time they'd lament to me how terrible it was that they'd not had sex for two weeks, I sat there and shrugged saying "talk to me when you're over a year." In actuality I was probably getting off far more than they were and I didn't need or want a bloke for it. I had myself.

I'm sure a lot of Safe Space readers know of Grace Latter and her infamous & brilliant blog post on Female Masturbation. When I read it I was like "yas!" only I was waaaay earlier to this game. At the age of 26 I can actually say that I've been getting mine for half my damn life. All through high school I was never interested in having sex because I didn't really see the need for it when I could dole out my own pleasure as and when I wanted it. No reason to deal with messy teenage boys at all!

In some respects I wonder if this influenced my demisexuality because in the years I wasn't having sex I'd been imagining what it would be like but then when I actually did it, it never felt as mind-blowingly awesome as I'd thought it should and that feeling has persisted. It morphs into anxiety & over-awareness of what I'm feeling and that I'm not enjoying it as much as I think I ought to be which is obviously only going to make me more tense etc.

So I don't have sex very often. And that's totally cool, it doesn't mean I love Le Boyf any less or that our relationship is without physical affection, that's just how I roll as a Demisexual. You get me?

But I should talk about the other flag I fly under. It's become very apparent to me in the last year or two that I don't just find men attractive. I can't tell you how many times I've been scrolling through tumblr, seen a picture of Daisy Ridley and thought "my god, could you *be* any more glorious?" I could start a list of the actresses I find attractive but then this post will be even longer than it is.

Identifying as Bi is slightly more complicated for me as the Demisexual aspect means my attraction to men or women is less "I wanna have sex with you" and more "I am super enthralled by your face/clothes/personality/creative skills and want to mildly stalk you on the internet". Obviously being in a committed long-term relationship means that any attractions I do have will not be acted upon but that doesn't mean I can't flail about on Twitter that I want to marry Kate McKinnon (who doesn't?).

I hope this long-winded tour of my sexuality has cleared up a few things. I know I have confused folk in the past :P It's also really good to get this all out there. *and breathe*

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Loving The Winter Season

Winter can be a cold, horrible and miserable time. But instead of using this as an excuse to be miserable ourselves, here at Safe Space we want to share with you some of the things about winter that we absolutely love. The things that you can really only do in the winter and the things that we really look forward to. This is because, as far as we’re concerned, there’s enough in the world to make life difficult, hard and horrible, so why would we ever let the weather make us feel that way too? So without waiting too long in this chilly weather, here are the things that we Safe Spacers love about the winter months...

Faye: Oddly, even though I was born in the middle of summer, I actually hate the season. I find it too hot and I really struggle with overheating. I hate sweating and I basically end up sweating all summer. I get stuffy and uncomfortable and there is never anywhere to go. And thus, Winter has and always will be my favourite season. It’s cold, and the perfect time to snuggle up inside and just feels me with such a heart-warming feel. There are so many things about winter that I absolutely love and most of them are materialistic but a lot of it is just the feeling that fills my entire body. I love hot chocolate while wrapped up in warm clothes, love the way the hot chocolate fills my body with the warmth it craves but also just how wonderful it tastes. I also love the Christmas drinks that get released in all the coffee shops, making coffee exciting as well as warm and tasty. I love snuggling on the sofa in my duvet and watching movies. I love snow. I love the crisp, fresh, cold air. I love that it is a time for spending with friends and family with good spirits and love. I love buying and giving presents to people, showing them how much I appreciate them and love them. Winter is just the best season by far, there is very little about it that I dislike.

Jess: Given the option between summer and winter, I know that most people would choose long hot summer days but I have always favoured the months between October and February, there is so much to look forward to! Halloween, Bonfire Night, Christmas, New Year and then my birthday in January. I love the anticipation of this time of year as one event makes way for the other it seems like there is always something to look forward to. Winter for me is a time to reflect on the year that has passed and what I would like to accomplish the following year. It’s a time for change and fresh starts, for family and friends to come together and put their troubles behind them for a little while. It’s a time to be a little bit kinder and a little more generous than usual towards those closest to us and to strangers. As the leaves start falling and the air gets crisper it always brings a smile to my face because I know that winter and all of the joy that it bring is on its way.

Laura: Winter is my favourite season of the year; whenever I think about the last few months before a New Year dawns all I can envisage is white, frosty pavements, steaming mugs of hot chocolate covered in cream and marshmallows, scented candles flickering in the dusky light, new pyjamas, snuggly blankets and Christmas. There’s something about Winter that compels me to feel safer, warmer and happier than any other time of year which is bizarre as Winter is anything but warm in the UK. I secretly love the fact the days get shorter and I leave work in the dark at night...it heralds the promise of Christmas...and I love Christmas. It means cosy nights snuggled in bed with a book in new pyjamas and Christmas bedding, it means frosty commutes to work and feeling the pavement crunch beneath my feet, it means warming bowls of soup for lunch and red, cold noses. It means happiness. I love winter and everything it entails and I couldn’t imagine living somewhere in the world where Winter wasn’t cold, rainy and dark!

What are your favourite things about the winter months?

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(Not quite 21) Things I've learned in my 21 years.

This week I celebrated my 21st birthday. It was a day filled with friends, cake, Disney movies and all the things I love. My best friends visited me thisweekend and it was just what I needed after the horrible, anxiety-ridden days I had endured the week before (due to the US presidential election). As I feel like a lot of people do on their big birthdays, I’ve been thinking about what I’ve learned over these years and reflecting on my experiences and I thought I would try to get some of them down in a post. So, here goes.

It’s okay to be single. Really. I am 21 years old and I have never been in a relationship. Ever. I don’t think I’ve even had so much as a ‘thing’ with anyone. Which for a long time I felt weird about, because when you’re a teenager so much of the media aimed at you involves first love and relationships. But I’ve come to realise recently that it really doesn’t matter. I am perfectly content and happy on my own. This isn’t to say that relationships aren’t great and sure, if the right person comes along I’d be more than happy to enter into one but I’m not worried about whether that happens or not. I’ve got me, and that’s enough.

Things that don’t go according to plan can sometimes surprise you. I never intended to go to the sixth form I wanted, but it’s what I got stuck with. And yet, I met some amazing people there who I still consider to be my closest friends today. I didn’t want to drop out of University when I was 18, but in the end it gave me the time to deal with my grief and become a far more open and relaxed person. Even the University I’m currently attending wasn’t my first choice, but I’ve ended up really settling in and enjoying life here.

Everyone is problematic. I, like many people I think, often put certain people (usually celebrities) on pedestals as a child and teenager, thinking they could do no wrong and then was outraged when they said anything that didn’t fit with this perfect image I had of them. Turns out, even the most educated and best intentioned of us will still get it wrong or say something inappropriate sometimes. We’re all human and we make mistakes. It’s how we respond to criticism and calling out that really matters.

Everyone has “stuff” going on in their life. And you most likely don’t know about it. That doesn’t always excuse shitty behaviour, but it’s something I try and keep in mind when someone is acting a particular way. And people often will be sympathetic to your own situation as well.

It’s okay to cry. I didn’t cry much as a child at all. I mean, I cried when I got hurt but that’s mostly because it was a knee-jerk reaction. But I never cried at movies or tv shows, or what was happening in my personal life. I’m not sure whether I’ve just become more emotional and empathetic as I’ve gotten older or it’s something else, but I cry a lot more now and it’s good. Instead of keeping all of my emotions reined in until I’m fit to burst, I let myself feel what I’m feeling, and I feel so much better for it.

Sometimes, you’ve got to put yourself first. This is something I’ve struggled with for YEARS. I’ve spent a lot of my life putting people before me and it could have awful effects on my mental health. I was so scared of being thought of as ‘selfish’ that I would put friends, who were often toxic for me anyway before my own interests. But putting yourself first is NOT selfish – sometimes you just have to take a step back and take care of yourself before anyone else.

There’s a lot more, but those are just some things I’ve observed and come to realise, particularly in the last few years. And even I find putting some of these into practice difficult, especially when society tells us to do the opposite. Most importantly though, I’ve learned we are all growing and changing and learning. And that’s okay.

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A New Way Of Living

Earlier this week I read a spectacular blog post by a friend of mine called Zara. (You can read it here). In the post she talks about how important books and words are for her and how they’ve impacted her life, especially as she has recently been diagnosed with Autism. And the post made me look at my own life and how books have helped me.

I’ve always been a lover of books. For as long as I could remember I had my nose stuck in books. From Roald Dahl to Jacqueline Wilson to Karen McCombie to R.L. Stine to Lucy Daniels to J.K. Rowling to Cecelia Ahern to Jodi Picoult to Linwood Barclay. One book after another after another. Diving from one story to the next. I feel lost without the comfort of my books.

When I was a young child until my teens, I read every single night before bed. Devouring the words on the pages as quickly as I could and escaping into fictional worlds that were different and more exotic than my own. Eventually I started reading at other times of the day too. At breaks in school and at work, on the bus, whenever I got a few minutes spare. I would rather dive into a story then sit and think about my life.

And today I do the same thing. But I also don’t. It’s a difficult balance now. There are times when I want to read, so I decide to take the bus or the train rather than drive or walk and then open my phone and end up playing a game or scrolling through twitter because it’s easier than opening my book and exiting the world.

For once in my life, I sometimes find myself rooting my mind in reality. And it has caused a great deal of confusion. Because I am also struggling with life too. So I should want to just escape from it all, surely? And yet I don’t. No matter how much I itch to read, something always seems to stop me.

Once upon a time I would have classed this as a “reading slump”. But now I am trying to embrace it because maybe it means that there is something in the real world that I want to enjoy. Maybe not escaping into a book could actually, somehow be a good thing.

I guess only time will tell. But I am certainly going to try to turn this negative into a positive. Life is already too hard without feeling guilty for not reading a book.

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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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Recovery is Hard

Since we last spoke, I have finished counselling. I am officially in recovery for my mental illnesses and it’s nothing like I thought it would be.

For the first couple of weeks after finishing therapy I was unstoppable, I was going out almost every day doing things that I haven’t done in years, I was on top of the world and having the time of my life. My social life was busier, I looked better, I felt better and I was making everyone around me so proud with my progress which gave me such a buzz and made me determined to push myself further.

For the past two weeks I’ve been going through a really hard time with some family stuff that I won’t go into here out of respect for my family’s privacy. Day by day I’ve been struggling and have felt myself deflate slowly like a balloon.

So right here, I’m going to admit something I haven’t told anyone.

I am in recovery and I am not okay.

I always imagined that when I reached that massive, far off, recovery milestone that things would be easier, that bad days would be a thing of the past and that I’d be able to function just like everyone else. But for me, that isn’t the case. I’m still ill.

Recovery is so much harder than I ever could have imagined. I still have days where it’s a struggle to get out of bed and I still have triggers that I’m not yet ready to face. The only difference is that before it felt okay to have these problems, whereas now there is so much expectation on me to be okay and instead of having my counsellor to guide me out of the darkness I have to try and find the way myself.

Now that I am in recovery I am feeling a lot of pressure to stay in recovery. I’m finding it harder than before to admit to the people around me when I’m struggling, but harder still is admitting it to myself because I am so scared of relapsing.

Recovery is not what I expected and right now I am going through the process of figuring out what it means to me. Here’s what I have so far:

• Being in recovery does NOT mean that I am cured
• It’s okay to have bad days
• Recovery is at my own pace, not anyone else’s
• Being in recovery means that I’m doing better than I was before
• Recovery is the process of returning back to a normal life. It doesn’t happen all at once

I’m learning that recovery is personal to each individual and that everyone’s journey is different. I’m still making great progress and when life throws bricks at me, I keep on getting right back up. That is what being in recovery means to me.

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

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Why I Stopped Therapy

A few months ago, I hit a point in my life where I realised that while the anti-depressants were helping my anxiety, it was making it known to me that I had other issues to deal with. Suddenly I was more aware of routines I was doing that I hadn't even realised were happening. Such as washing my hands before and after going to the toilet. And also having to wash them with two pumps of soap, water and then two more pumps of soap and water to make sure they were clean. 

That was just one of the things I noticed myself doing and thus I self-referred myself for online therapy. I've done CBT (Cognitive Behavioural Therapy) in person before and it did help at the beginning by the last few sessions I was lying to the therapist because it was easier than feeling like a failure because I couldn't do something.

I thought this time would be different.

I'm not sure why but I just thought that it would be. Because I needed so badly to get better. And therapy just felt like the last straw for me. If this didn't work, I wasn't sure what else was left.

Obviously if you read the title of this post then you know that therapy didn't work but it also did. In a way that I definitely wasn't expecting.

I started therapy about three weeks after referring myself which was amazing. I was officially diagnosed with OCD and that part of therapy was, well, very theraputic. I suddenly understood so much of my life. Those teenage years that I thought I was just being, well, an angsty teenager? I was actually just struggling with undiagnosed OCD. So many little things in my life that I didn't even know were habits made so much more sense to me. Fears that I have about odd things, it all just sort of connected in my brain and I have to admit, it made me feel so much better. I suddenly had a reason for things.

Of course, just being diagnosed is not the end of the journey.

And thus my therapist and I started to tackle my OCD, tried to stop routines and habits using CBT techniques to re-train my brain. To let it know that everything will be okay.

It wasn't easy. But I also didn't expect it to be easy.

I was making really good progress and I was proud of myself. And then we hit a road block. I gave myself a behaviour to overcome that I essentially found too difficult to do. And I knew I could tell the therapist that I had done it and it was fine but I didn't want to lie again.

So instead I was truthful. Explaining that I had been too tired and busy to psyche myself up enough to break the behaviour down.

The response?

That maybe therapy isn't the right thing for me right now. That if I was too busy, maybe I should take a step back and re-refer myself when I felt more able to complete the tasks.

Queue my panic. My worry. My sadness. I was not cureable. I was going to be stuck struggling through day to day life forever. I was not worth the time to fix. I was just wasting everybody's time, including my own.

Recurring thoughts. Round and round. Spiralling out of control. I really struggled after hearing that. I had needed therapy to work. I had wanted to be truthful and get everything out in the open and I was told that I just wasn't trying hard enough so essentially didn't care enough about my own recovery. And that is where my brain took me and things got worse.

Until they didn't.

Until I realised that, at the end of the day, I am in control of my mental health. It does not control me. And I do not need a therapist to make me believe that I am a lost cause. I also do not need a therapist to help me.

Because I have incredible friends and incredible strength. I know what my routines are, I know what I need to do to break them down and so I am now doing that. I no longer wash my hands before every single meal. I don't even wash my hands before eating finger food. I know that sometimes I still feel I need to but just the fact I don't every time is a major step for me.

I also don't wash my hands as much as I did.

I have cooked in my microwave again.

I have eaten off of plates that haven't just been cleaned.

They are small steps. Small things. And things that other people may not even think about. But to me, they are milestones. They are things that I have overcome. Challenges that I have completed without therapy. Because I am strong enough. 

And so are you.

(Therapy did not work for me. But that does not mean it will not work for you. So please always try it. Without therapy I would not have the tools to help me continue fighting alone.)

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This Sad, Mad World

I have the highly unenviable task of needing to write a post today. This fucking day. I didn't want to write something upbeat and positive yesterday in case all our worst nightmares came true. And they did.

I have no words beyond expression of sorrow and anger on behalf of the people in the US who are going to feel the repercussions of this day for far longer than the next four years. For the People of Colour, the people of the LGBT+ community and other marginalised groups who did far more to try and prevent this awful outcome than the privileged white people who failed to comprehend the scale of the threat, I am so sorry. You didn't deserve this.

I'll be standing with you in the months to come.

Some wise people on my twitter feed have been posting & retweeting a lot of very insightful things today. I want their words to be heard instead of mine.

Heidi Heilig
Justina Ireland
S. Jae Jones
Kaye M. (@GildedSpine)
Maureen Johnson
Victoria Schwab

and many others that I'm sure you've seen. Keep sharing the tweets and posts that inspire you and raise up the voices of those who should be heard.

If you need to step away to process this whole shitstorm then I recommend you check out this thread by L.D. Lapinski which has some excellent suggestions for getting yourself and your mental health through this period. I know a *lot* of people have taken solace from it today.

That's all I've got today. I'm fervently wishing for a return of Hope, I'm betting I'm not the only one.

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Being An Introverted Friend In A Digital World

Understanding that I was an introvert happened to me in my teens. I don't remember how or when it happened in all honesty but I believe it was probably something that I stumbled upon online. And then my brain just went, yes. Everything suddenly made sense to me. That was why I wasn't like everyone else.

For any who are still confused or not really familiar with the term, an introvert is someone who gets drained of energy by other people. Extroverts need other people to give them energy.

It does not mean I am anti-social. It does not mean that I hate socialising. It does not mean that there is something wrong with me. It simply means that I cannot spend too much time around people. It means that I need alone time to feel alive.

Introverts do not have to be shy people - though I am also shy. They can also be the person at the party. The one that everyone knows and loves and sees. It just means that they may not be at a party every single night. It probably also means they leave before the party ends because they can't deal any more.

With all of that being said, I want to talk a little bit about how being an introvert affects my friendships with people. But mostly I want to focus today on how it affects my friendships in this online world as an adult.

As a teenager with no constant internet access, I was a texting fiend. As soon as I could, I got unlimited texting so that I didn't have to keep topping up my phone with non-existent money. And I would text my friends constantly. To this day, I recall being told many, many times to put the phone down and interact with the people in the room. Texting was the way that I stayed connected with the people around me.

Then the internet really happened. And things started to change. It was a slow change but I very rarely text now. First MSN arrived so texting moved to instant messaging. And then I was contacting people across the world from me. Then I moved across the world so texting was too expensive so instant messaging was the only way to talk but no one was ever online at the same time as me so that soon slipped away too.

Moving onto university brought twitter into my life and texting was replaced by DMs and replies but it was never exactly the same. And, in all honesty, has never been the same since. Even with the introduction of Whatsapp, I still do not text as much as I used to.

And the reason for this is firstly time; I no longer feel I have the time to just sit and text someone. I have too much else going on to just chat. Which seems, awful, but is true.

Secondly, I get constant updates of people's lives on twitter and facebook and blogs and after all of that, despite it not actually being around people, I have to admit that I often feel really drained. Especially when there are lots of opinions flying around too. And I often close the app and move my phone completely away from me because I need some alone time.

Thirdly, I struggle to think of things to talk about. My life, as far as I'm concerned, is boring. It's mediocre at best and very little really changes. And so texting to me is difficult because when asked, how are you?, I respond, fine and then the conversation always trails off and it just seems pointless to even try. If something interesting happens then I obviously text or tweet or DM people, but otherwise, I just don't know why someone would want to know about what is going on in my life.

So I don't really text.

Which is fine.

Except that I also feel like I'm missing out. It sounds stupid, especially after reading the above. But I feel like by not texting people or DMing them constantly, I get forgotten about. I'm the last to know things. Or I just don't know them at all. And it stupidly makes me sad. And curious; do I have to be in constant communication with someone for them to remember that I exist?

And it is with that thought that I am going to end this post. Maybe you know the answer? Maybe you don't. Maybe you feel the same way. But honestly, I would much rather meet up for a coffee or dinner and catch up on everything than constantly communicate with someone. What about you?

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Where is Home?

Until very recently, I had always been very firm about where my home was. I had always lived in a little corner of North West London, and had only moved once in my life about 5 miles down the road. Then in the space of a month, my parents uprooted to the South Coast, and I moved again back up to the Midlands. It was a bit hectic and rather confusing, and I’m still trying to process it all.

I’ve been at University here for about 6 weeks now, and I seem to be coping relatively well so far. Things are busy, but I quite like them being busy and I’ve made a group of friends and enjoying my course. There is one thing that has been bothering me since I’ve moved here though, and that’s that I’m not really sure where home even is anymore.

For most of my friends here, it’s simple; they’ve always lived in the same area and still do, and that’s home. It’s a little more complicated on my side. For me, I think, London will always be my home. It’s my favourite city in the world, it’s where I grew up and where so many life-changing events happened to me. It’s where all of my friends are in the holidays and everything is familiar. I don’t have to think about how the tube works or the times of the buses, how late everything is open or where I need to go to get something. It’s a diverse and open-minded city with things going on all the time that I can just escape into and find something new. I’ve been to visit a few times since I’ve been at University, and every time I step off at St. Pancras station, I feel so happy and relaxed.

I did spend three weeks in that town on the south coast, and whilst I know all my stuff and some of my family is there, I just can’t call it home. The house is unfamiliar and not mine, it takes a half hour walk to get to any form of civilisation and I have nobody there besides my dad and some of my stepfamily. Part of this struggle, I think, is that I haven’t been able to go back since I moved to University, for a number of reasons. The first is that, I just find it easier to settle into a place if I don’t leave it for a while. Second is money and time; a train from the midlands to the south coast is not direct, nor cheap and I can’t really afford the train tickets nor the 5 hour journey to get there. There have been many weekends here my friends have headed off home and it’s been making me think about where that is a lot.

Last weekend I spent my first nights away from my University town, in the centre of London with a friend. I was worried that it was going to make me homesick and not want to go back, that I was going to go back to University and hate every minute I wasn’t back in London.

But, as I boarded the train due north and sat in my seat, I had an odd, comforting thought that I couldn’t wait to get back to my pokey student room and see my friends and get back to the town. I was filled with relief that my excursion back to my home city hadn’t made me incredibly sad, and in fact had made me realise how attached I had become to this little city in a few short weeks. It’s definitely no London, and I have to say I do miss being able to attend all the book events I used to when I lived in London. But for now, this little city in the middle of the country really isn’t such a bad place to call my new temporary home.

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Phantom Phobias

Living in the UK, Halloween has never really been a big deal to me. I was quite a sheltered child, and I didn’t have a lot of friends when I was little. So trick or treating was never really something that excited me, or something I ever considered doing? I never liked to play dress up as a kid either. I didn’t have a huge imagination; the most I ever got to pretending was picking out a life from the Argos catalogue or playing schools with my siblings. 

And then Halloween just got annoying for me; kids ringing the doorbell all night, my dog barking, eggs being thrown about…. I never associated it with fun.

via GIPHY

At some point in my life, I developed a phobia of people in costumes. It got to the point where once I was leaving the supermarket and someone was standing by the door (collecting for charity i think?) in a bear costume, and I physically could not walk out the door.

It’s become less of a problem in recently years. Maybe because I acknowledge it more and just avoid those situations? Generally those people are in the street, and if I don’t look and just keep walking, I’m mostly fine. It reared its head at YALC this year though. For those of you who don’t know, YALC is the YA Literature Convention and it takes place at London Film and Comic Con. Where, of course, people love to dress up as their favourite film or comic characters. In costume. In the whole building. 

And I was already tense at the thought, but I told myself it would be fine. I was just walking along the corridor with a friend and some people in costume were standing nearby having a conversation, and i just turned away and kept walking, and then one of them came up behind me and BREATHED IN MY HAIR. 

Before we even approach how creepy this is anyway (just because he’s wearing a mask he is suddenly allowed to invade my personal space?) but there was no reason for him to do so. I hadn’t made eye contact, it wasn’t someone I knew, or anything. Cue massive panic attack in the floor of the arena.

via GIPHY

So for me, Halloween is a time of stress. Yay, people in costume everywhere. Yay for living in London where there are literally people, everywhere. I guess kids bother me to a lesser degree, but its still an issue. 

My ideal Halloween involves locking myself indoors and not having to deal with any surprises. Luckily I live in a flat, where the chance of getting trick or treaters are pretty slim, so I don’t even have to deal with the guilt of that. But if you do encounter me at Halloween, don’t be surprised if I run away. And, for the love of god, do not sneak up on me with your mask.

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Taking my Stoma to the Spa

I love a good spa day.

Swimming, a steam, hot tub, a treatment and being pampered in a robe and fluffy slippers. My idea of heaven.

Over the years I've found being in a relaxing environment such as a spa very much help me with my mental health and give me some much-needed reflective time alone. I tend to ask for them as gifts for Christmas or birthdays so, that every year I get at least two days of rest and relaxation. This year I received one but had to reschedule it three times due to Crohn's flare ups, surgeries and hospital admissions. Finally, during the end of my recovery from this surgery, I went.

Let me tell you, my body is different now that I have an ostomy bag stuck to my belly. I also have a wonderfully pink 5 ½ inch midline scar and a couple laparoscopic ones on my left side too. But I wanted to be brave and ‘show off’ my battle wounds. I brought a new bikini – a somewhat impossible task given it was September – and took the plunge.

This is me:

I am not perfect. I don't think that my body is where I would like it to be, but look at that scar! It's not all of it, nor is all my bag on show but those two things remind me I am still here. That I have fought my disease and came out the other side.

My writing and my words might make it seem like I am confident and slightly eager to flash my recent surgical scars but I am a shy individual; hardly every comfortable in her own skin. With my weight gains and losses over the years as I battled this invisible illness I have; I’ve loved and hated my body. This disease has given me the typical mooning of my face, the swelling of my belly, shrinking thighs and loss of my buttocks; I’ve grown accustom to these over the years, but the scars from someone cutting into me – surgical intervention - still shock me. If I am truly honest, not wanting those scars was a big factor in why I always tried all the medications. Why I always put up with the side effects from them too.

I don’t want surgery or my ileostomy to change what I do or how I am.

I walked into that changing room, took my clothes off and put a bikini on. Acted like my scars and bag were not there. If people stared, let them. I wasn’t looking for their acceptance. I was looking for my own.

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