All About That Positivity

It came to my attention at the beginning of this week that it was #asexualityawareness week. Now, with that and with my promise that I would now be a more vocal voice for the asexual community, I thought today was a perfect opportunity to talk to you about the positives of being asexual and of being out about it.

Because we can sometimes get dragged down by the negatives of things. The difficulties we face fitting in, the terror of coming out, the struggles we continue to face when we meet new people, etc. And today, I just want to push all of that aside. I want to stand up and say, yeah, that stuff happens but also, there are good things about this sexuality, it's not all doom and gloom!

So yeah, here's just a little list of the things that I have found really positive about asexuality and about being honest about my sexuality.

• Our label is Ace. 

I mean. Seriously. How cool is that? I get to just stand up and shout "I'm ACE" to the world. If, you know, I felt like it.

• The Community.

Okay, in all honesty I've still not dived fully into the community yet because, busy, but from what I've seen so far, everyone is so incredibly amazing. There's support if you need it. Advice if you need it. Love if you need it. No one judging. Everyone understanding. It is literally a wonderful thing.

• LGBT Community.

So, I do still a little bit like an outsider in this community, a participant who often gets missed BUT I also love it so much. I love the camaraderie and the support and the love and just, they all get it. They understand the coming out issues. The struggles of not being heteronormative. And they will be there for you as much as they can be.

• #AsexualityAwareness Week

This may seem odd in here but honestly, this is so incredible. When I was a teenager I didn't even know asexuality existed and now there's an awareness week for it. I mean, how wonderful is that? Someone may be struggling to understand themselves, struggling to fit in and then they might stumble across something online this week and it might just click for them and that is just incredible to think about.

• Helping Others.

Okay, I am not going to go out on a limb here and say that my coming out post on here did help people but I do know that some people have come to me to say they understand themselves a little better now. I know that I've been thanked for my words and supported by a lot of people. So while I know I may not be making a huge difference in the world, if by being out and proud of being Ace helps make a huge difference to one person's world, then I'll take it. We all need to support each other.

• Educating Others.

I'm not a teacher and while I used to want to be a teacher, I no longer feel I could do the job. However coming out as ace to some of my friends was an interesting experience because despite having trans, bi and gay friends, they had never heard of asexuality. So it meant that I could educate my friends on what my sexuality is. What it means for me and how it differs from person to person. Meaning that my friends now have a further understanding of the world that they didn't have before and that is pretty spectacular.

• No More Pretending.

When I was growing up, I had to try hard to fit in. I had to talk about boys in a way that I never truly felt and I was worried that people would work out that something was wrong with me so I even went so far as to date boys too. Needless to say it never worked out. But now that I'm out in the open about everything, I no longer have to say things like: "I would get into his bed so fast, the world would collapse." - And yes, I have said things like this before now.

• I am who I am.

I know who I am. It's such a weird concept and it's hard to describe to people who have never truly had that clarifying feeling about their lives but now that I understand more about asexuality, now that I know what it is and that I relate to it, I feel so much more confident in myself. I feel at peace with my body. I no longer have to try and get it to feel something deep inside when looking at other people because I am fully comfortable in the understanding that I never will. I can appreciate physically attractive people on a base level and then continue on with my life without ever thinking of them again.

That's all I can think of right now. I am sure there are more but mostly I am just happy to be "out of the closet" (even if I hate that expression) because I feel so much more comfortable but I also know that there are reasons to not share your asexualness with people. So I want to finish by saying that please do not feel pressure to tell the world about your sexuality. You need to do what is right for you. But I also want you to know that no matter who you are or where you are, I will always be here for you.

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My Sexuality.

I’ve known that I was a little different to other girls in regards to romance and sex from a fairly early age. I remember having sleepovers at 13 and we’d all go round in a circle and confess who our crush was. And when it came to me, I always drew a blank. I had no answer, and my friends thought I was being coy and no fun. But the truth was that I just didn’t like any of the boys at our school.

As a teen, I put this down to having a lot going on in my life and not having the time to focus on sex and boys. I mean, my mum was sick with cancer and a lot of my free time was taken up with that, which was a perfectly viable explanation for my lack of hormones and attraction towards guys right?

Over my school years I was asked out by a few guys, all of which I turned down. Partly because I was point blank terrified of commitment, but also because I wasn’t attracted to them. When people asked me about celebrity crushes, I grabbed for names and said the obvious ones like Zac Efron and Sam Claflin (although I’ll admit, both of these crushes were pretty genuine). When we talked about ‘girl crushes’ though, I became so animated. I had about 5 actresses and musicians ready to go in my head, and I remember having these ‘girl crushes’ as far back as the age of 12.

Turns out, they were just the regular kind of crush.

I didn’t realise I was bisexual until I was about 18. When I tell people this, they’re pretty shocked and often respond with ‘Surely you knew sooner?’ and maybe subconsciously I did. But heteronormativity is rampant in our society, and whilst I supported LGBTQ+ rights from a young age, I never let myself think that I was maybe a member of the community too.

As soon as I realised this, everything in my life made so much more sense. All that jealousy about when some of my friends got boyfriends, all the actresses I looked up to and adored, all the female characters I loved and were obsessed with. As soon as I realised I was attracted to girls, there was no way of denying it.

It’s taken me two and a half years to become fully comfortable with the label and myself. There have been many times I’ve questioned it, and I’ve spent a lot of time, especially in recent months, questioning whether I am in fact bisexual or gay, but I have and do sometimes experience attraction to men – just not nearly as much as I do with women.

I still struggle telling people in real life sometimes. There are a number of times in the past four weeks at University I could’ve just told people, but instead I sat back instead, stumbling over the words. I told myself before coming to University that I wanted to be totally open about my sexuality, but when it comes to the crunch I panic. It almost makes me angry that I even have to tell people, that people just assume I’m straight unless I explicitly state otherwise.

My journey with my sexuality has been long and one that is still ongoing. But I know that even compared to last year I am so much more comfortable and happy with who I am, and hopefully that can continue into the future.

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What I Wish I Could Have Told You

As I mentioned way back at the beginning of this year, I’ve been having some difficulties with my physical health for a while now. Over the summer I was put through physio which was actually really helpful and every day that passed made me feel stronger and less weak but underneath it all, I still felt overwhelmingly tired and there were days when my muscles literally felt dead and my joints just screamed at me. As far as I’m concerned, these things were not normal.

So I booked another doctors appointment because I would really like to get to the bottom of everything now. Unfortunately my regular doctor wasn’t available at a convenient time for me so I had to book with a different doctor. This was the first thing that went wrong.

Now I am not in the dark about my weight. I am 100% aware that I am in the “obese” category of BMI calculators. I am also very much aware that I have put on a lot of weight recently - which is often what happens when an active person is physically unable to exercise regularly but you know… whatever.

But I am also 100% sure that my weight is not my overall health problem at the moment. I am very certain that my weight is exasperating the situation. That if I lost the pounds, I may not be in as much pain but I am also certain that I would still be in pain as I am positive that there is an underlying problem going on.

Of course, my belief of this in my own body is hard to portray to a doctor in 10mins. So in a way I am not surprised that she blamed all of my issues on my weight but at the same time, I am devastated. It felt like all of my concerns about my own well being were being dismissed. That I was just wasting her time and my time when all I needed to do was lose some weight and stop complaining. I felt like I was taking up too much space - which I feel enough without the help of a doctor basically saying it to my face.

But the real problem was that the second she mentioned my weight. The minute she told me that I was in pain because there was extra strain on my muscles and that I was tired because when you become short of breath after exercise you generally are tired, the fight went out of me. I became submissive and passive, agreeing with her instead of arguing that I knew that and this wasn’t that.

At one point I tried to tell her how active I used to be and she just gave me this look that took my breath away and nearly made me cry right in front of her; she didn’t believe me.

So today, I want to say those things that I should have said in that room. Because I need to explain to someone that I am not okay and it is not just because of my weight.

• I have always been overweight. I have always been active and energetic and I actually kind of love doing exercise. The fact I wasn’t in pain before now makes me believe I’m not feeling this just because of my weight.
• I am napping in the middle of the day. Maybe not a huge thing for most but I have never been able to nap. I could never get so tired that I needed to nap.
• I am always tired. I have been tired from the age of 16 onwards but I still managed to do things. The tiredness I have now is different. It is exhaustion at it’s highest point. There are days when I simply cannot wake up and get out of bed.
• I went from running 10k to barely being able to walk 5 mins without being in excruciating pain.
• I am getting frequent migraines which never happened before. I have noticed that my trigger is over-doing it. If I’ve pushed myself too hard, my body repays me with a migraine.
• I miss being active so much. It is metaphorically killing me not to be able to go for a run or a gym session or a swim easily.
• Before this, I very rarely went to the doctors because I hate them and I just dealt with whatever was thrown at me. I don’t make a fuss of things. I am now because I know deep down that something is really wrong.

Maybe next time I will be able to make the doctor understand. But for now it is back to waiting and hurting and dealing. For now, it is just getting on with life, one day at a time.

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Hitting the Wall (of Denial and Regret)

I think like most people, I am guilty of living in some denial and regret in certain aspects of my life.

When it comes to a chronic illness, it's just that CHRONIC. It doesn't go away, it can't be cured only treated and those treatments change and sometimes fail. It takes time to become comfortable with what you have, what is wrong with you and how you go about living with it.

I've always embraced my illness. I figured the sooner I accept it, the better I will feel right? I was half right. Whilst I did accept my illness and how it was going to always be in my life, I didn't always like the fact that it was always going to be in my life.  It's difficult to come to terms with that; the long term, chronic part of IBD. Not that any physical aspect of my illness is particular pleasant but it's the people I've met; the resilience, bravery and positive humour they show that keeps me going; it's what I strive to emulate.

So you get use to denying how you feel. You tell your doctors you're happy to go ahead with new treatments when previous ones fail: because your body is immunosuppressed or it's just plain useless or has it in for you. You don't tell them that you're angry that this condition picked you – because it's not genetic, I didn't give myself this illness, ITS NOT MY FREAKING FAULT! – or that you're tired of them trying new treatment after new treatment. You hope and pray every time you do start a new treatment or drug that this is the one that works. That it is the one that gives you some relief from the pain and / or symptoms you're experiencing. You hope you don't live to regret your decision to take harsher and more potent medications.

I don't support this living in denial or the regret of what could have been, I try to live in the moment and remain positive. I did this more than ever during my most recent hospital admission where they ended up taking my colon and giving me a ileostomy. But even with that, I have to talk myself into believe I made the right choices and I am happy with how my life is being lived. For the most part, I convince myself of this. I accept my reality and move on, do all those things a ‘a normal and healthy’ person can do.  But even I have my limits. And my triggers.

One is my actual supply of ostomy appliances. Their smell fresh from the box reminds me of all that I have lost and what I need to do for the rest of my life – change my appliance every other day and empty it 5-6 times a day. It doesn't hold me back but it makes me stop and think, I remember living with a colon for so long it's still very odd to not have it. And once my body is healed from this surgery, will my mind be healed? I doubt it. It is so very strong my doubt; I deny myself the feeling that this is not okay and that I'm only 28 for Christ sake! This is new and scary and I don't know how long that feeling will last. So I push myself to be okay with it all, not deal with the fact that I am scared because I've faked being okay with this to every one: I don't want to let them down, let their opinion of me change, of not being so brave and courageous. I don't want to be a failure to them.

 I will occasionally have moments where it is too much. And learning how to deal with them is an uphill struggle, a steep learning curve. But that is okay. I need to hear it's okay.

But.. I wouldn't want to live without my denial or regret. I think those two emotions keep me fresh. Let me explain; if I didn't feel a small twinge of regret and what if and wondering why I was still in agony, I  would never have sought medical attention in August and my diseased colon would have killed me. There is no one set way to solve the problems that arise with IBD and every patient is different, even though we do follow certain patterns. If I didn't suffer with some sort of denial; I wouldn't be human. I would be a robot.

Sometimes you just need to be reassured that feeling those ‘negative’ emotions is okay. It's a part of life, a part of being a human and it's part of this recovery. It keeps you soft in world where it is so easy to be hard and cold.

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Safe Space Talks University

University is a big change for a lot of people. At eighteen it is potentially your first time of being truly independent, the first time responsibility is placed on your shoulders. It is also full of other people in similar boats and people in different boats. It can be a scary and exciting thing all at the same time. So today a few of us Safe Spacers are here to tell you about our experiences with university.

Faye: Before I went to university I actually spent a year on my own in Canada so going to uni did not feel like a big step to me, not really. For once I would at least be in the same country as my mum. But University was an entirely different kettle of fish than Canada had been. In Canada I had a job and could more or less keep to myself. University was people all the time. It was social. It was drinking. It was loud. It was an adjustment. In my first year I experimented. I went out drinking with friends, flirted, danced, experienced. I did a little more of it in second year and by third I realised it just wasn’t me. I didn’t like partying. I didn’t like drinking. I didn’t feel comfortable in clubs and bars. So I stopped going. And I wish I had done that in first year. Because university doesn’t have to be all drinking and play, it can be about just being you and learning. And somewhere you should find someone who feels exactly the same way. So if you’re worried because you don’t particularly want to party, don’t let that stop you. Go to uni and just don’t party. It’ll be fine, I promise.

Ray: My university experience is actually still on-going even though I originally began my studies in 2009. It didn’t start well; I had to go through Clearing & ended up at Aberystwyth University way out in the wilds of Wales. Don’t get me wrong it’s a gorgeous place but it was 3 hours by train from home & I wasn’t exactly great at making friends. My course wasn’t what I’d hoped & I never even had a meeting with my personal tutor. I got pretty isolated and spent most of my time in my room on the internet (oh hang on…) so by the time I got into my second year my enjoyment for the course had plummeted and since I’d have to do a year abroad for my 3rd year I decided dropping out before I tanked my grades was the best option.

Fast forward to 2012 when I signed up to the Open University just before the fees hiked up to try and finish my degree the way I wanted, doing the modules which interested me. I recently started what should be my final module so if all goes to plan (and I don’t bugger everything up), I should have a Open Degree with Honours by next July. If I’m really lucky it’ll be a 2:1.

It’s been a slog, I’m atrocious at time management, particularly when I have all the free time in the world. Somehow I get more done when I’m working full time at a school, studying both for the OU & a TA diploma and trying to write a book - riddle me that would you kindly? If you are unfortunate enough to follow me on twitter then you might have seen the epic lengths I go to in procrastinating my assignments - I’m not exaggerating when I say that maybe 5 out the 7 essays I did for my module last year were almost entirely written either on the deadline day or the day before. I can’t imagine how I would’ve coped at a traditional Uni with a dissertation.

I wonder sometimes if I should have bothered with Uni at all. I went more because I felt I was expected to go, because I was “smart” and academically “gifted” although that basically means fuck all after the age of 12. For the most part I never got into the “student lifestyle” and it’s not something I ever really cared about. I cared more about the education aspect which is hilarious because I’ve since realised that I hate learning stuff only to be assessed on it and I’m a terrible student. Just let me read books on stuff, don’t ask me to write essays about it & certainly not essays in french. Don’t go to university because others expect it of you, go because it’s what you truly want to do.

Louise: Leaving home at eighteen was a daunting but exciting time for me. It was the first taste of proper freedom and I was going to relish it, I remember thinking on A Level results day. I was going to be moving 130 miles away to Norwich to study; I couldn't have picked a further away place to do my course if I tried. It also included studying abroad for a year, something that pulled me in event further when I applied.

But once I'd arrived in halls and realised just how far I was away from home and my creature comforts, the more daunted and scared I became. This wasn't normal was it, to feel overwhelmed by being alone for the first time, ever? 

That first semester was hard for me; I was studying something completely new to me, I began to regret my degree choice and wanted to drop out. I found it difficult to make friends with people on my course because I felt I knew nothing compared to them. My housemates were constantly out clubbing and I preferred films and good food – still do. I never confided how I felt to anyone, even when I returned home at Christmas, I didn't want to be seen as a failure. I'm glad I didn't because university life did get easier for me.

It was only when I came to realise that I could really find out who I was whilst being on my own here in a new city, learning new things, meeting new people, having new experiences. And I did just that, explore. I found out what I truly am capable of. My year abroad only strengthen that. Those years – from the tender age of eighteen all the way to a ripe twenty-two year old – shaped me. And even though many people would say that I have wasted my time and money on a degree I don't even use, I don't regret it for one second. My life would be infinitely different without my time at university mixed in there.

Lily: My University experience is a bit of a tumultuous one that is very much still ongoing, as I’m a few weeks into my second attempt at first year. I went to University at 18 in Sussex near Brighton, fresh out of school. My first few weeks were fun but nothing outstanding, and I was finding it hard to socialise with anyone in my flat and all my other friends lived elsewhere. About 5 weeks in my mental health took a turn for the worst and I knew I needed to get out. It wasn’t the responsibility or looking after myself that was the problem - I’d basically been doing that since I was 14. But the pressure of academic work was getting with me and I was feeling increasingly isolated. So I took the decision to leave University indefinitely and go out and work. Six months in, whilst working in the United States, I realised I did want to go back and study, but not quite yet. I had submitted an application to UCAS in January to appease my Dad and so I accepted a place at a University in the Midlands, but deferred for a year to give myself some time.

Three weeks ago and nearing the big 21st birthday I moved into halls again, ready for a fresh start. So far it has been good - I get on well with some of my flatmates, and have quite a few other friends in my building, the work has been relatively interesting and I’ve been keeping busy. I won’t lie when I say I’m a little worried about hitting that 5 week mark again, but this time already feels different. I have friends in my flat, I know how to handle my mental health, and I just keep telling myself, if I managed 3 months across the Atlantic by myself, I can surely manage 12 weeks a 3 hour drive away from home right?!

In all seriousness though, University is about balance. Sometimes you just don’t feel like or don’t have the time to go on that bar crawl. Sometimes you need to take a break from that deadline and go and eat some chocolate cake. Listening to yourself and what you need, and talking to others is so important.

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What Is Love? (Baby Don't Hurt Me)

I haven’t really got the right work/life balance yet.

So I apologise for my tardiness and shall strive to become slightly less rubbish at getting posts up on time.

Anyway, aside from my inability to juggle everything effectively there’s one thing that has been on my mind lately. And that’s love.

I went to see Bridget Jones on Friday evening with a few friends and I found myself crying at the end of the film; not through sadness but genuine, heart-pounding, stomach-spinning happiness. If you haven’t seen the film yet then I don’t want to spoil it but it doesn’t give anything away if I mention that Bridget gets her Happy Ever After.

Since then I’ve been thinking about the whole notion of love and happy-ever-afters and getting myself thoroughly stressed out by the whole thing.

I don’t believe that there’s one person out there for us all; I think it’s naïve to believe we can only ever find one other person on the entire planet who is meant for us. But I also believe that true love isn’t easy to come by. In my twenty three years I’ve been lucky enough to be in love twice. People often say ‘how can you love more than one person?’ ‘what is love anyway?’ ‘how do you know you’ve ever been in love?’

Tricky questions but the beauty of love is that it’s completely subjective to the person who is feeling it. The love I’ve had for two of my partners wasn’t the same. I loved them fiercely but in different ways because they were different people. During both relationships I was content and confident enough to know that I would happily spend the rest of my life with them by my side. (It wasn’t to be, I’m great at getting dumped but still the sentiment remains that when you know, you know.)

Sometimes love isn’t meant to last, sometimes it’s fleeting and beautiful and you have to make the most of it. But I’ve got to an age where I want to find something long term and settle down and find my forever person who I can grow old with. People scoff when I say I feel like I’m running out of time to find someone. ‘You’re only 23’ ‘you’re so young’ etc but age doesn’t matter. When you feel like you’re ready to settle down, you’re ready, whatever age you are.

When my relationship broke up earlier this year I was left in a sort of blind panic about my future. I, stupidly, was convinced that I’d found my forever person already and that I’d never have to worry about first dates again or worry about finding someone who could deal with my weirdness. And suddenly to find myself single with the prospect of having to one day get back into the dating game made me feel completely nauseous. 

I’m slowly feeling less terrified about the whole thing but I still don’t feel like I’m ready to let someone into my life again in that way. And that’s the inner turmoil in my head right now. I want to settle down and find someone but at the same time I’m scared of letting someone into my life again in case they too walk out.

And watching Bridget Jones made me think that everything happens for a reason; what’s meant to be will be. Perhaps I have to stop worrying and stressing about my love life, perhaps the moment I least expect it is the moment I’ll find my future husband. *crosses fingers* Or perhaps I just need to remind myself I’m 23 and I have plenty of time to settle down.

There’s so much pressure from other people my age who are getting married and having kids and it scares me knowing that my own parents were already married by my age. It feels like there’s a timer ticking down to the moment when it’s too late for me to find my happy ever after but I mean, if Bridget Jones can find her happy ending then I can, right?!

There’s so much emphasis on love and relationships in the modern world and you can’t go a day without seeing something that makes your heart sink a little when you realise you don’t have anyone to cuddle up to at night or talk to about your day or snuggle and watch a film with. I love being single and the freedom that comes with it but there are always moments in my day that I wish I could share with someone, or text them about and it’s always nice to know you have someone waiting with a hug for you at the end of the day.

NOW I’M JUST BEING DEPRESSING.

Soz.

But I'm not the only twenty-something panicking about never settling down and being destined for the life of a crazy cat lady, right?! 

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Now that I'm 26

Last Friday it was my birthday, technically I was born 5 days early so today *should* have been my birthday if I'd not been so terribly eager twenty-six years ago. I have to say I'm not sure how I feel about being 26, I'm now past the quarter century and I'm kinda worried that I still don't feel like I have all my shit together. Heck, I *know* I'm a mess but I'd rather like for it not to be so obvious to everyone else.

This cake kinda represents my life rn

Some of my fav Youtube humans have done wonderful videos on their birthdays called "X things I have learned in X years" depending on whether they're turning 24, 25 or 26 etc. Rosianna Halse Rojas did this one last year, Lex Croucher did hers earlier this year and Charlie McDonnell did his last week when he turned 26 (it's odd to think he's only 6 days older than me).

I'm not doing a similar list today, mostly because my memory is sufficiently terrible that I don't think I can string together 26 things that the last quarter century and a smidge have taught me.

Instead I'm going to list 26 Hopes I have for the next year.

Now I'm 26 I hope...
1. That the world doesn't end in November (I know I'm not the only one)
2. That I am able to complete my degree by next July.
3. That I can get a 2:1 in that degree
4. That I can get a job I enjoy & which isn't a chore to get up for
5. That I can figure out what is going on with my health
6. That I can then start to feel better
7. That I can have lots of fun adventures with my friends
8. That I can also have lots of adventures with my OH
9. That we can properly celebrate 5 years together next June
10. That my loved ones are safe and happy
11. That I have the ability to finish a worthy draft of my book
12. That I have the courage to share that book with others
13. That I can find the magic to write another book
14. That I can meet & befriend more like-minded people
15. That I can be a good friend to those in my life already
16. That I can become a better person than I am today.
17. That I can feel happy with the choices I make
18. That I can feel happy in my body & my head
19. That I can learn to be kinder to myself
20. That I can find the passion to pursue my dreams
21. That I can weather the knock-backs during that pursuit
22. That I read books that inspire me
23. That I can meet some more of my favourite authors
24. That I remember to be grateful for everything I have
25. That I always tell those who matter to me how much I appreciate them.
26. I hope that my 27th birthday will be spent with those I love.

So that's a rather eclectic mix of things that I hope will come to pass during the next year of my life. I know some of those are dependent on chance & opportunity but many of them will only be possible if I make them happen myself. I have be more active in creating my own happiness. No one is going to just give me the spell to magic my life into its best possible configuration. I'm going to have to work for it. So next time you see me bitching about "why isn't x, y or z happening?" ask me if I've actually *done* anything to make it a reality.

Now I'm 26... maybe I need to start acting like it. (at least in some respects, there's no need to go full-blown grown-up y'know?)

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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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When Surgery Gives You Life

What Makes Me, Me

If anyone has asked me this last year or even a couple of months ago, I would have struggled to answer.

Was I definable by my relationship? My role as a friend, a daughter, a sister, a cousin? My likes and dislikes?

My invisible illness, even?

I don’t hide the fact that I have Crohn’s Disease, a form of Inflammatory Bowel Disease (IBD) and it has defined my life – both physically and mentally – for the five years since I was diagnosed. For the majority of that time I’ve been able to work and enjoy my life because medication was keeping my disease under control. But this year I needed to have surgery to remove a portion of my small bowel. This went to plan in May but three months later I needed to have more surgery; this time to remove my colon and give me an ileostomy. This was major abdominal surgery and would change my digestive system for life.

An ileostomy is where the small bowel is diverted through an opening in the abdomen. The opening is known as a stoma. A special bag is placed over the stoma to collect waste products that usually pass through the colon, rectum and anus. You wouldn’t necessarily know I had this unless I told you.

Getting used to this new chapter with my health makes me question what I am doing with my life and who I am.

A coping mechanism for dealing with my IBD was always to mock my disease and try to find the funny within my, at times, horrible situation. I connected with other IBD patients and shared stories with them; trying to find some new ‘normal’ in my life. I knew I was different but that made me all the more awesome for it. I’ve also met some great and inspirational people, most of whom I can now call friends. What came from this was that I now defined who I was by what I had. Sadly, despite the strong medications, my disease was still progressing. The medical profession and my own IBD team promoted surgery as a last resort; so when I finally got to that stage, I was scared. I couldn’t believe how soon this had come around. I was also angry; I was hoping for more years without needing to be cut open – cutting means that reoccurrence was higher, complications and lowered quality of life – why wasn’t my consultant doing more to keep me intact? This anger didn’t go away easily. Not until I was living in pain every day over the summer did they finally found out I now had a very diseased colon; it needed removing, and sooner rather than later.

I committed to my subtotal colectomy almost as soon as it was proposed to me.

Considering how I felt about surgery, this doesn’t make sense. But you know what else doesn’t make sense? Living in pain every day, being symptomatic and unable to sleep and eat for weeks on end. I was assured that this surgery would fix me. Removing my colon and giving me a permanent ileostomy seemed drastic but I just wanted to get better; I was willing to try anything. That was the pain talking. That surgery was the turning point for me. I was mentally prepared for it, the hospital physically prepared me for it – giving me a PICC line to feed me with TPN – how well I coped with it, how well I lived life with it, was all up to me.

For the most part I love my ileostomy. It’s weird to love a stoma but I truly do. I’m oddly fascinated with it and taking care of it is just a new challenge to me. I’ve never felt so well with Crohn’s in all my years with it. Yes, I am still having to have Crohn’s medication to keep my disease under control and maybe it’ll get me into remission, and yes I’ve had to modify my diet and keeping hydrated but again; that is just a new challenge. All the ostomates out there who live with ileostomies and colectomies – yes, there is a difference! – show me that life with a stoma isn’t all doom and gloom. I am not ashamed to have one, its saved me from months of prolonged agony!

Yes, it’s not the ‘normal’ set up for a digestive system but it works. I am still here, I am happy and I am no longer define myself as “Louise with the Crohn’s Disease”.

My disease has shaped my life, but my ileostomy has saved me from being overwhelmed by it. My ileostomy is giving me back my life, free of pain and anxiety. The array of activities I can still do with an ileostomy gives me hope that I can finally take back control of my life, even the ambitions and goals that Crohn’s Disease did try and take away from me. From swimming to horse riding, travelling without the fear of needing the loo, holding down a job, relocating, leading a healthy and fun life; things which I feared I wouldn’t be able to do before. Most importantly, I’m not scared to try new things now. I actively want to pursue things that give me life experience instead of being the person who sits on the side lines, scared to try, fearing people’s judgements and comments.

I am proud to have a bag of poo attached to my abdomen. It’s the best move I ever made. It’s made the old me see who I can be.

It’s made me, ME.

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Pokémon Go and My Mental Health

Like so many people across the world, this summer I have been playing Pokémon Go. There have been many mixed reports on this game, but for me personally, Pokémon Go has helped me in a way I never would have believed a game could. It’s gotten me out of the house, gave me a reason to face my anxiety, and has even given me a sense of achievement both in the game and in meeting big milestones in my mental health recovery.

For me, the best thing about Pokémon Go is that it is brilliant escapism. I might be out in the big wide world, but my brain is very much in Pokémon Go Land and that is a brilliant distraction from my anxiety. Instead of going out and worrying about crowded places, having a panic attack and my triggers, my mind is very much focused on what new Pokémon I may encounter today and how much further I have to walk before my egg hatches.

This summer I manged to visit two of my biggest PTSD trigger places and that is down to Pokémon Go. The first time was going to my local park (which I hadn’t been to in several years) because there was a Jigglypuff nearby. I was so into the game that I hadn’t stopped to take note of where I was until my best friend pointed it out to me. The other time was a trip to my town centre. Me and my friend decided to take a late night Pokéwalk. I set out planning to walk to the library (which happens to be a Pokéstop) and back, but I noticed there was another Pokéstop just up from that and so I walked further and further into town, telling myself just one more Pokéstop and then I could turn back if I needed to, each Pokéstop I reached was a huge goalpost for me mentally. What’s more is that I’ve since visited both trigger places a few times now and each time it loses a little bit more of its power over me as I create happy memories with my friends to replace the bad ones.

Last month when I was on holiday, I had a couple of bad days with my mental health. Normally, I would bow out of any plans arranged that day and take it easy in the holiday home, but on one particular day we’d made plans to go somewhere that I knew was supposed to be great for Pokémon so I pushed myself through it and ended up having one of my favourite days of the holiday. We were walking along by the beach when I caught my first Pikachu - an epic moment in any Pokémon Go players career - I was so, so excited. My dad turned to me and said “That’s the first time we’ve seen you smile today!” For a moment I felt bad about that, I was in a beautiful place yet I was more excited about a game, but then I remembered that without this game I might not have made it there at all. I might not have seen this gorgeous area, walked along the beach and created one of my favourite memories of this summer. So if a cute little yellow mouse was the thing that made me smile on a bad day, so be it.

I’ve been playing Pokémon Go since the day it first came out in the UK and I have only just reached level 13 but I am okay with that. My friends who downloaded it way later have already surpassed me and I’ll always probably be lagging behind everyone else, but that is okay. Because to me Pokémon Go is more than the level I’m on, or the CP of a Pokémon I’ve caught. The eggs that I’ve hatched are proof of the steps that I have taken outside of my house. Reaching a new Pokéstop means reaching a new goal in my mental health recovery, and every Pokémon Go medal that I earn are really mental health medals for every time that I’ve managed to push past my anxiety to go out and have fun. I doubt Pokémon Go will be around forever, and like all things it will fall out of fashion eventually, but for now it’s the stabilizers on my bike holding me steady whilst I get my bearings as I go out into the big wide world and for that I will always be grateful.

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

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Work Work Work Work Werk

I HAVE A JOB, EVERYONE.

The job I spoke about at Clinton’s…the one they said ‘it’s not a no, it’s an I don’t know’ never got back to me again. BOOOOOOO.

BUT last week I got an email from one of my old managers at Waterstones asking if I would be willing to come in for an interview and GUYS, GUESS WHAT?! 

I’M A BOOKSELLER AGAIN AND I COULD NOT BE HAPPIER BECAUSE I LOVE BEING A BOOKSELLER MORE THAN EVERYTHING ELSE IN LIFE, EVEN CAKE.

And I wanted to be a really annoying, mother type figure today and give some tough love advice. If you have anxiety or agoraphobia and you don’t have a job. GET ONE.

Seriously.

Yes you will be shit scared but oh my god how AMAZING you feel when you get a job. You immediately have a greater sense of self-worth, you get to meet new people and make new friends, you learn to manage your anxiety but you also are DOING something which means you don’t have time to think about your anxiety.

I was petrified to go into work on Thursday because the last time I was on the train I had a panic attack. YAY. So I was shaking with nerves before I’d even left the house. Thankfully one of my gorgeous friends was a legend and rang me for twenty minutes whilst I waited for the train and got onto it and kept me distracted for part of the journey. And then I was on my own.

I got off the train, I went to Sainsbury’s to buy my lunch, I walked to the shop and then I started my first day back at Waterstones (I worked there for just under a year before) and MY ANXIETY WAS OK. I DID NOT DIE.

And that’s what I’m relearning…it is ALL in my head. The only reason I get anxious is because I overanalyse and worry about things that haven’t even happened. The reality is vastly different. Yes, I’ve had a few wobbly moments but they’ve passed quickly.

And in just TWO days of being back at work my confidence has grown so much.

On Thursday a man said I was wonderful, that because he now knew I worked in the shop he’d definitely be back. BE STILL MY BEATING HEART.

I helped a couple find the perfect book for their four year old grandchild on Friday and they were so thankful my heart melted a little bit.

I met a tiny dog called Daisy who barked the shop down but she was cute AF. (I nearly stole her)

Basically my life is amazing because I have a job again. I have a reason to get up every day, I get to meet so many new people every day, I get to earn money every day. I get paid to sell books. Basically could I be any luckier?!

All I want to say is: get a job. Stop with the excuses because that’s what I hid behind for so long. You CAN do it, OK? I promise you that you can. Try it, give it a go and see how much you will amaze yourself. I know it’s easy for someone to say that but I KNOW what it’s like to be at rock bottom and I know how hard it can be to get to the top again but I promise that finding something to do, even volunteering, will make a huge difference to your mental health.

Many employers are also very understanding now about mental health and you are protected under the Equality Act so you are entitled to reasonable adjustments to your workplace or work times for example if you struggle to commute during rush hour or you find that you work better in a room with a window, you prefer working from home, or you need time off for doctors appointments etc.

SO please, give it a go.

Pretty pleaaaaaaase.

Be brave xx

*mum mode disactivated* 

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