It Creeps Up on You

Diary Entry: 29.04.16

It's two weeks until my surgery.

I've finally had all my paperwork for my pre-op and my admission for the actual surgery.

It's come around fast. Faster than expected. Even though it was only a month away when I got told it was provisionally booked.

Planned anxiety.

That is what my first surgery was.

Lately, I’ve been finding myself getting less sleep because my head has been stuck in the past. I’ve been struggling to get myself focused on what is happening right now. I am lost in the memories of what I experienced last year.

In a physical sense, my surgeries have fixed me. But how much does the process of surgery affect you mentally? Has it fixed how I feel about being chronically ill? If anything, the physicality of having an ostomy – a badge of ‘honour’, a visual representation of my disease, something I can show to ‘prove’ my illness – has helped. I am sad it got to this but I am happy too. That conflict has the most mental impact.

I remember the days of being stuck in the bathroom, in agony, crying, unsure of how much more I would be able to handle, how much more I could take. When I would need to call it quits.

Nowadays, I am emptying my bag and its mere minutes. Even a change is 10 minutes’ tops. Ten minutes every 48-72hrs isn’t that bad; all things considered.

But how does that – cleaning my stoma, seeing it, looking after it, knowing I am different, knowing I am permanently changed, realising this is my reality – affect me?

Having an ostomy is not the fix some people believe it to be. I am one of the lucky few who has gone into remission and off medications since surgery. I don’t take this for granted at all. If anything, I am weary of this, it could change at any time. My previous IBD remissions have not last long so I am just enjoying the days as they come, at the moment. Even that is a mental battle; getting used to all these good days. They haven’t happened in such a long time nor for more than a few at a time. I am thankful for my current situation.

It doesn’t stop me from feeling lost, confused and downright sad some days. I keep my mental battled hidden, inside my head most days; trying to find distractions from these thoughts; keeping busy to take my mind to other places. I try and write; try and explain my thoughts in the written word. Actual words… they don’t come so easy. It’s still such a taboo subject. Not for fear of being judged but for the fear of admitting what I am feeling.

It is the lack of control I have over these thoughts. It started with one little memory creeping back into my head; when I realise the date or what I was doing last year on this day… and it soon spirals. My pre-surgery experiences were detailed in my blog and my diary. I know what I felt because I wrote it down, I relive it through my own words. It connects me back to my past; it’s like a flood – washing over me with such force, overwhelming and strong.

As I move forward, as the days go on and I get closer to last year’s “good days” I hope these memories move from being sad into feeling proud. I will hopefully see how well I have done – not that I don’t see that already – and how much of a difference a year has made. I will see how being different is a strength and it just one small piece of what makes me who I am, now. Not who I was.

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Love is in The Air

February is the month of love thanks to Valentine’s day so here on Safe Space we wanted to take this theme and run with it but instead of the traditional love of another, we wanted to talk to you all about self-love. In this post you will see what self-love means to some of the team members, how hard it can be to love ourselves in a society that constantly points out your flaws and imperfections, and what actions we take when it comes to loving ourselves and putting our needs first.

Jess: I used to think that people who said that they loved themselves were lying. That’s such a sad statement to write, but it’s true. I was brought up in a society that encourages you to constantly want to change and tells you that you’re not good enough and if you dare to love yourself is quick to shut you down and tell you that you’re being big headed. As women we are taught to be humble and play down our achievements, that nobody likes a show off. Society constantly sends the message out to girls and women that loving yourself is not okay. So yes, growing up I found the idea of loving myself an impossible concept, so much so that I didn’t believe it when people told me that they felt that way about themselves and I find that incredibly sad.

This all changed for me last year when I started following women online who promoted self-love and body confidence whatever your shape or size. These women were bright, vibrant and from all walks of life. They all looked completely different but the one thing they had in common was that they radiated self-love and positive energy, not only for themselves, but for all women. I found their confidence beautiful and I realised that if they could love themselves then I could too. Something clicked for me and when I looked in the mirror I started to like what I saw. I’ve never felt so confident or sexy and yet nothing had changed except my own attitude towards my body. Other people noticed this change in me too and I started to receive so many compliments from the people around me.

Around the same time I also went into recovery for my mental illnesses and started doing things I never thought I would do. This gave me a huge surge of confidence in who I am as a person. It made me feel strong and capable and I gained a new level of self-respect that I’d never had before. This woman I was discovering was a badass and I liked her very much.

Over the past year I finally learned to love myself both inside and out, but like any relationship it’s not perfect. I still have days where I look in the mirror and don’t like what I see and there are still times where I doubt myself and think I’m not good enough but for the most part my attitude towards myself has completely changed. In learning to love myself I have also learned to take better care of myself, to be kind and to treat myself as I would a friend whether that is by giving myself a break when I’m not feeling well, knowing when to say no, or treating myself to a new lipstick. You’re the only person you’re with for your entire life and the relationship you have with yourself is the most important one of all. Loving yourself in a society that encourages you not to is a constant struggle but finding that inner love will give you an aura of confidence and self respect that you will carry with you for the rest of your life that no magazine or mean comment will ever be able to take away.

Louise:

I have a seven inch scar down the middle of my abdomen. It’s red and an ostomy bag sits on the right-hand side.

Scars are the map to my past.

My scars are also the battle wounds of my previous fights. Yep, fights. I’ve been a long-term battle with my body since September 2011. My invisible illness of Crohn’s Disease meant that I secret fought my body both physically and mentally. Most of the mental acceptance of having this invisible and chronic illness has been come from others being unable to see what is wrong with me; they can’t see how ill I am, they can’t feel my pain my guts have given me, they can’t understand how much I wish this wasn’t my life.

I still fight my body but now I am winning not only the physical battle but the mental one. It has taken five years, two big surgeries and multiple wounds to realise that my disease doesn’t mean I love myself any less. If anything, I have grown to appreciate my body and how I see my body because despite having something physical for people to identify my illness with – my ostomy bag and midline scar – I have grown to accept myself; scars and all.

People would consider my flaw to be the fact that I poop out of my abdomen now but I see that as my quirk. It isn’t a normal thing but it is by no means a rare thing either. So many people have ostomies and no one knows because they are concealed under clothing. I show my ostomy when I choose too; it is my little secret. I am proud of my secret and you are privileged if you have seen my ostomy bag. Don’t mistake my secret as a dirty little secret, I am supremely proud of my ostomy because it has changed my life and without it I would be still living a life of chronic pain, or possibly not even be here. I celebrate the fact that medicine has come this far to give me this in order to live a life I am proud of. I love my ostomy; it gives my life purpose. It gives me hope. I keeps me out of hospital. Its taught me that my body is a wonderful thing, despite its differences. I’ve accepted that it might look different, it might operate differently but it is still worthy of love. And I love it, for all that it is, and all it will be.

Lily: Learning to love and accept myself has been a long process that is still ongoing. For a long time, particularly growing up, I hated the way I looked. I hated that I was gangly and tall and I didn’t feel feminine, I hated that my hair was neither curly nor straight but this weird in between frizzy mess. I hated my spots and my braces and my nose. Honestly, I could go on.

Thankfully, a lot of that has changed, but it’s taken a long time. I try to embrace my height as much as possible, but there are still days I find difficult (trust me, clothes shopping when you’re a 6ft woman is not a fun or easy experience). I’m learning to love and embrace my natural hair for what it is despite society telling me all of the different products I could use to make it straighter and prettier and ‘more normal’ (don’t even get me started).

Growing up I can’t necessarily remember hating my personality but I think like many people I didn’t particularly like myself either. I’ve always just spoken without thinking and things have come out wrong. I don’t like a lot of the things a lot of people my age enjoy like drinking and clubbing – which is perfectly wonderful and valid if you do like those things, it’s just not for me. There was a period of time about two years ago when I hated myself for not being like other people my age – for being introverted, for having anxiety, for preferring a night in with pizza and Disney movies to ‘the sesh’ as it’s not referred to.

Over the past two years I’ve come to really start to accept that part of myself, and that it’s okay if I want to do things a bit differently to the rest of my peers. I love my interests and that sometimes I care maybe a bit too much. I know now that I can be a good listener and that people feel comfortable coming to me for advice and comfort and I love that about myself. It’s definitely a process that’s still ongoing, but I think I’m getting there.

Faye:

Only a few weeks back I wrote a post about how at the moment I am struggling to love my body. I keep looking in the mirror and not liking what I see. Cursing myself as my clothes feel tight and just do not seem to fit the way they used to. And of course, on top of that are all the connotations of what being bigger than people leads to and how it feels like I am taking up too much space - literally. However, today I wanted to talk a little bit about how despite not particularly loving my body right now, I do quite like myself. There are times, naturally when I hate my personality and I end up questioning everything I do and whether I am even a nice person or very good at what I do but more often than not, I love me.

This is something that has taken me a long time to do. For years I have struggled to love myself, did not feel that I was worthy of any love, let alone my own. But I have finally come to a place in my life where this has changed and I am so very happy about it because in my opinion, if you don’t love yourself then you will struggle a lot in life - as I did. I’m not entirely sure when or why I changed my mind about myself, but I did and I am glad for it. I love that I know who I am now. I love that I am stubborn, emotional and organised. I love that I am also messy, closed off and easy-going. Because these contradictions are what make me human. I love that I can be high as a kite just on air and that I can make people smile just by being me. I love my laugh and my weird quirks. These make me, me. Now I am not saying that loving myself is easy, there are times when I hate everything about me but it is my love of myself that keeps me alive and keeps me going and that is good enough for me. Plus, if I can’t love myself, who the hell else will?

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In Light Of Valentine's Day!

First of all, I want to start this post by being completely honest with you. I hate valentines day. And it isn't just because I am single. It is also because it is just an awful day. Yes, go ahead and celebrate that you're in a relationship. Please, do. But maybe, just maybe, you could celebrate a few times a year? Or just on a day you create yourself rather than this commercial and overblown day?

*cough*

Anyway... that's not what this post is going to be about because as much as I do really, really dislike this particular "holiday", it is sometimes nice to reflect on love, isn't it?

So today I wanted to discuss with you something that I thought you might be intrigued about. Last week I discussed how I knew I was asexual (read that post here), so this week I wanted to talk about what I want from a relationship. I'm not ready for a relationship at the moment, but at some point in the future I might be and this is what I would like to happen... what I would hope for.

First and foremost, I would want my partner to be my best friend. Corny and cheesy and all that good stuff but I feel that it is also fundamental. This is someone that you will potentially spend the rest of your life with and even if that isn't the case, you're probably going to be spending more time with them than anyone else so yes, I feel it is very important that the person is my best friend.

And by that I mean someone that I can trust with my whole self. Someone who makes me a better person, someone who knows that I have rough edges and still loves me anyway. Someone who loves my little quirks. Who understands my issues and has compassion. Someone who makes me feel that way about them too. Because without all of that, our relationship is never going to last.

Of course, I'd also need to find someone who is okay with my asexuality and my lack of desire for sex. It's kind of a big deal breaker really, isn't it?

Once I've found that person, and we're settled in our relationship, I have some very odd things I'd love to happen which I thought would be easier to list.

• When we move in together, I'd want separate beds at the very least, if not separate rooms. 

Maybe I'll change my mind on this once I'm actually in a relationship but for right now I find it so difficult to sleep in the same room as anyone else unless I really have to. So it would be more comfortable for me if we slept in different rooms. I also think it would make the waking hours more precious. 

• I would want cuddle time but also my own time.

I'm still an introvert and I still get overwhelmed by being around people so I would need my partner to understand that and to allow me time to recuperate - and hey, what do you know, I have my own bedroom that I can go and hide in!

• I'd like to have pets. Maybe a cat. Maybe a dog. Maybe both.

I'm not sure I'd ever be able to have pets on my own, which is sad, because of my OCD and anxiety issues but if I had a partner, I think it would be really nice to also have pets. Especially as they could be around to keep us company if one or the other of us was away for a little while. 

• Eventually I'd want kids.

Either fostering or adopting. This is definitely somewhere in my life plan. Currently being an aunt is more than enough for me to deal with but when I'm a little older and settled with my life, I would quite like to have a child or two of my own. I can't imagine this not happening.

I can't think of much else at the moment and of course, all of this may change in the future or when I do eventually end up in a relationship with someone. But for now, this is what I would like to happen. And maybe it will one day, eh?

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A Little More on Asexuality

Recently I was asked a question by a friend and I thought that it was quite important and probably quite helpful not just for said friend but for asexual awareness. And I really want to help other people to understand asexuality a little bit better.

The question was quite simple. How do you know you're asexual and that you haven't just found the right person yet?

Now I'm not saying that meeting the right person won't change how I feel about sex, so it is possible that I simply haven't met the right person.

However, despite that, the reason that I know I'm an asexual is a lot more to do with meeting the right person and simply knowing what I am like and what, incidentally, I like.  

As a person growing up in this world, it is hard not to see all the references to sexual attraction. It is there in books, there in films and most likely it is there with the people around you as well. That reaction that people get when they see someone physically attractive. The way that they want to have sex because of how someone looks. 

This is not something I have ever felt. I have admired a lot of people for their beauty and very much enjoyed looking at handsome men on TV but I wouldn't end up daydreaming about them or feel anything sexual towards them at all. It is more just an appreciative-ness for their beauty.

Of course, that in itself does not make a person asexual as it might just mean that they've never found someone sexually attractive. But when this feeling is combined with a lack of fantasising about sex at all, questions need to be asked and answered within yourself. Which is where I found myself. And I tried. I tried to have sex and I tried to be sexually active but I never truly got into that "zone". 

When I fantasise, I always imagine other people having sex. I never, ever imagine what it would be like to have sex myself. It literally never even comes into my brain. Trust me when I tell you that when you read books and watch TV or film and people fantasise about sex all the time, it makes you very aware of how little you care about it.

I am not going to lie to you. I have been with three people in my life sexually. And each and every time different things happened. In the first instance, my body reacted. I very much enjoyed my sexual experience but what I liked most was not so much being pleased but being able to please my partner (who was also my boyfriend at the time). The second time wasn't very good at all. He was a little too forceful in trying to get me to touch him that when he tried to touch me I ended up pushing him off and leaving. And the final time I was too drunk and he was too drunk and I just didn't want to do anything and as soon as he realised he wasn't getting any, he left sharpish.

So maybe my sexual experience isn't enough to determine that I'm asexual. Because I haven't given anyone enough chance to see if I might like sex, right?

But here's the thing. I don't want to see if I might like sex.

I literally have no desire to have sex.

And that is why I know that I am an asexual. And I am 100% okay with that. And maybe one day I will find someone to spend my life with who feels the same. Loves me for who I am and all of that.

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Fearful

I’ve already had five and a half years with my chronic illness. I’ve gotten used to it disturbing my life and disrupting my plans. It seems to have a knack for doing this, a lot.

What I am not used to is being without medication.

It feels foreign, almost like we are testing the IBD gods, tricking them into thinking I am well.

For all intents and purposes, I am well. Latest multiple test results came back clear; things are looking up for me since surgery last summer.

But that doesn’t mean I feel content with being in remission.

If anything, I feel more scared. I feel fearful.

I could take the medications and I got comfortable with knowing I needed to take them. My life was a schedule of medication, appointments and managing my IBD issues.

So much has changed, its overwhelming.

Despite going through hell before surgery, knowing that that wasn’t normal but I needed to go through it to come out the other end, fit and well. I also needed to get my ostomy to have the life I am currently living, and it is the only reason why I am doing so well. That, and my surgeon’s faith in physically removing my colon to improve my Quality of Life. And it sure has! And managing a stoma isn’t as bad as I have conceived it to be in my head. I have had nothing to be scared or worried about, the support and care I receive for my stoma is beyond anything else.

To go from that hellish Summer of 2016 to this remission of January 2017 – a mere five short months – is beyond comprehension.

Remission is one of those words that medical professional within IBD care throw around cautiously because it’s not exactly an easy road and doesn’t always happen, let alone being quite a complex goal to achieve. I have more important goals when it comes to my medical care; so, remission wasn’t high on the list. I had expected to need my mediation for a little while longer, be on the radar for a lot longer, just so they were watching me. I take comfort it that.

What do I have to take comfort in now?

I am more fearful being without my medication than I was taking it; and I was taking things which were potentially very harmful, but it was all outweighed by how absolutely rubbish my disease was making me feel, how much of my life it was taking away, how utterly miserable I was. And ultimately, those medications led me to surgery and this life I now lead. So, I appreciate all the shit I’ve been through, but I am still scared. Apprehensive and nervous, to boot.

I hope my remission lasts but I know it probably won’t. My ostomy has been life changing, almost saving my life – I can’t disregard my care nor my TPN days for also doing that – but how will it react to my body being unwell? So far, I’ve only had a stomach bug. I dread to contemplate how I’ll feel in a full-blown Crohn’s flare. But considering that that might not happen, I am here enjoying my good days, appreciating the NHS and loving my life, being proud of being an ostomate.

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Being Ill And a Hypochondriac

I am not good at being ill. I'm one of those annoying people who complains about being ill and how run down I feel and how I just want to go out and do all the things and not sit in my bed doing nothing. I more or less get cabin fever within the first day of being ill. Unfortunately all of this means that I am also very good at ignoring that I'm ill. It means I will still go places and do things when my body is practically screaming at me to rest because I hate being ill.

But aside from the actual illness being a pain and a nuisance, the other reason I hate being ill is because I am a hypochondriac. In case you haven't heard of this term before, it means that I am incredibly anxious about being ill. Jess wrote a brilliant post about it here on Safe Space as well which you can find here and which had me nodding the entire way through as well. 

What being a hypochondriac as a healthy person means is that every ailment I get - headache, muscle ache, itchy eye, etc - is over-analysed. It means that I am dying. I have an incurable illness and I will die a long slow and painful death. The problem is that as with every other anxious thought, I know it's not rational to think this way but I also cannot help it. What this means, of course, is I end up with other symptoms because of the anxiety flowing through my body.

Now add in an actual illness and you can see how everything might just be a little bit worse. For me an every day common cold is the flu and I am going to die. A stomach bug is the worst stomach bug and I am going to die. So on and so forth. It means that I am constantly anxious when I'm ill. Constantly alert and constantly wishing to be better so I can confirm that I am in fact not actually about to die.

But where this all gets contradicted in my brain is that I also hate going to the doctors. So while there is a theory that hypochondriacs are always at the doctors asking for advice about certain ailments, this is not true for me. In my head, going to the doctors means that they will actually insist that I am correct and I do have an illness which is killing me. Not rational, of course but that's how my brain works.

The reason I'm writing this post today is because I have had a cough. It is a cough that I've had for over three weeks and it is a cough that came with no other symptoms. I have thus been worrying myself silly about it. Telling myself I have lung cancer and am on my last legs. And so on and so forth. All the while more or less refusing to go to the doctors about it. Also because of the "only if it lasts longer than three weeks" advice we're all given.

Turns out, when I finally went to the doctors, it was confirmed that I have Bronchitis. So I'm not going to die - huzzah! - but if I don't kick it soon, I may develop pneumonia so with that thought weighing heavy in my mind, I've been taking antibiotics for the last few days and really hope that I might soon be back to my normal health. Keep your fingers crossed for me?

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Staying Afloat on Rough Seas

I haven't had anything worth writing about in quite a while. I still don't if I'm being honest but I've got to write *something*.

I started off 2017 with positive aspirations for myself - I was going to start taking better care of myself and being more productive especially since I had 5 uni deadlines in the first 3 months of the year. I actually got two of those assignments in EARLY with my next looking to be nearly 2 weeks early as well which considering most of my assignments previously got completed using this method of idiocy it's pretty damn impressive that I'm ahead of schedule with my deadlines.

I've also been trying to improve my sleeping & waking up habits so I'm not ignoring all my alarms and sleeping in until 10am. This has improved *somewhat*, I'm waking up around 8am when my alarms go off but I am still lying in bed for another hour scrolling twitter on my phone & obviously with the world in the state it is this usually ends up leaving me mentally exhausted before I've even extricated myself from the duvet.

God knows I'm not the only person feeling like this right now. Over the last two weeks it's been significantly harder to feel like I'm getting anything productive done and I'm not even being directly affected by the shitstorm raging on the other side of the Atlantic. Every day there's at least three new awful things happening and although the resistance is building online and around the world it still kinda feels like we're slowly being overwhelmed by a tidal wave.

I don't have a lot of helpful advice for dealing with these feelings. I know I probably should take more breaks from my twitter feed but as I'm otherwise sat at home all day on my own, shutting myself off from the internet leaves me isolated and without anyone to talk to which isn't exactly great for my mental health. At some point in the future I might write a post about loneliness when all your friends are online or too far away to visit easily.

So I'm kinda treading water right now, trying to stay afloat when it seems easier to just let all the madness overwhelm me. Believe me I'm fully aware that in the grand scheme of things my life is barely being impacted by this Nonsense but that doesn't mean I shouldn't be aware of those who are and acknowledge their struggles.

Be kind to yourself and each other. Don't be nice to nazis though - punch those fuckers.

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