Tuesday, 29 May 2018

A Ramble & A Wobble

Hi friends,
It's been a long time since I wrote a blog post and today, for about the 200th time this year I felt so frustrated I wanted to scream and turn my bedroom upside down but I decided instead of doing that, I'd write it all down. So, hey, here I am again. 

It's been just over a year since I handed my dissertation written on the performative body of Lady Gaga in and finished university, spent a lovely month celebrating with my friends and then moved back home to... well... home. I'm not saying that I don't like living here, nor am I saying that I'm not grateful for everyone around me. The truth is I'm just feeling very, very lost. When you finish university there's this expectation that you'll get a job in your degree-related career field and have a wonderful time doing everything that you love. Well, really, that's a pretty far cry from what actually goes on. 

Because of my chronic illness I decided hey, I'll get a part time job and then I can have energy to spend the rest of the time looking for artistic opportunities to get involved with. I've looked. I've applied. I've looked some more. I've applied some more. I've applied for things I didn't even want. I didn't even get them. This graduate thing is actually really fucking hard. I'm pretty sure I'm more tired from just trying to find something than working my actual job. 

What makes things harder is that I don't actually know what I want to do. I just know that I don't want to be pouring pints part time as my main source of income with absolutely nothing exciting and thought provoking on the side. I need to be creative. I yearn to be creative. But where the hell do you find these opportunities in a town where the arts scene is derelict? Where do you even begin looking in London? Because although I'm on the outskirts, it's a pretty big city. And hell, what am I even looking for? Do I want to perform? Do I want to write? Do I want to make my own shit and perform it? How does one even go about that before becoming bankrupt? Do I want to meet other people instead of doing it alone? And again, WHERE DO I BEGIN?

I know I am being a little hard on myself because in the last year I had my first paid performance job, had one of my plays performed publicly, have visited two new countries and have gotten really involved with local politics, which I love. But honestly, it's just not enough. I've gone from being surrounded by arts and inspiration and opportunities to struggling to find motivation to be creative, let alone any opportunities to be so. I know things will change, I know one day I'll find something amazing and creative and meaningful to do. But right now I'm struggling a little bit with the real world. I feel a little bit lost and I think that's ok, even if it's not the best feeling in the world.

If you've gotten this far, thanks for listening to my rambles. You're the sort of people I like and By George, I do actually feel better for letting this all out. Ramble - out. 

Lots of love x 

Sunday, 14 February 2016

Recovery: Why it's the hardest part

The last month or so hasn't been awesome for me. I spent two weeks bed-bound and sick, with the pills that were supposed to work - not working. I then spent 10 days in hospital being pumped with intravenous versions of said pills and on top of that a new drug which will hopefully (but slowly) bring me back to remission.

It's been 11 days since I got home from hospital, and I have to be honest, those 11 days feel so much longer. I feel like I've been sitting around, like a half brain-dead slug human, just waiting for a few minutes of energy to use up before I turn into a sloth again and fall asleep on the sofa. This, in a nutshell, is recovery, and I'm going to explain to you why it is for me the hardest part of chronic illness I've discovered so far.

So, let's go back to when I was admitted to hospital. When you're admitted to hospital you just pretty much accept there and then that something is wrong, you need help and there's nothing else you can do about it. So you may as well sit back, let the doctors poke and prod at you, and decide which drug to pump into you to calm your symptoms the hell down. You sit there, eat the lovely hospital food, chat to the nurses and waste your days away falling asleep and accepting cups of tea whenever they're bought around. Because you're sick, and there's nothing you can do. You do start to feel a little bit better every day, though, which is great, so eventually you get let home. FREEDOM!

However, freedom is not quite there yet, in the all encompassing version of the word. You're not in hospital any more which is great. You've got your own bed, TV and your mum's cooking which is arguably much better than where you were before. But you are still sick. The first time you walk up the stairs to your bedroom you're thinking, "wow, were these this steep before?" because let's face it, you've barely used your legs the last two weeks. You go to bed and manage a 10 hour sleep, but you're still exhausted when you wake up the next morning. The next few mornings, in fact. You take your pills, 24 a day at the moment is it? And drag yourself down to the living room, where you're gonna spend most of your time for the next two weeks at least because your body has been through hell. It's still going through it to a degree, and you must take care of yourself.

The problem is, you're impatient. You want to wake up with the same levels of energy you had before this flare up: but it ain't gonna happen. Walking to the shop 5 minutes away is an achievement. And you know what? There's nothing wrong with that. Recovery takes time, and it is gradual. But it's still hard to accept. You just want to get back to university, to all the people and the life you've got there. But even when you do get back, you won't be able to do everything you used to, not straight away anyway. And that's what sucks. When you're stuck in hospital, you can accept that you're not well and just sitting around doesn't seem so bad. And when you're well, and can do most things without too much trouble, life is good. It's just the limbo in-between that is hard. The adjusting period. The period where people say "oh! So you're better now?" and expect you to jump on a night out and down 20 tequila shots and party like it never happened.

Unfortunately, with illnesses like this, it doesn't disappear overnight. It can take weeks or months for a person to get back to some kind of normality. I'm over the moon that I'm out of hospital and that I'm hoping to go back to uni this weekend. But I know it's going to be hard. I know I'm going to be exhausted and I know I'm going to get frustrated when I can't do things. I don't like that I feel like I can't trust my body at the moment, that a wave of fatigue or a dizzy spell could come over at any minute. I'm scared that I'll venture out with my friends and feel like shit. I am. But that's how it is, and you gotta start somewhere. So that, for me, is why recovery is hard. But I'm determined to keep my head up, I know I'll get back to myself eventually, even if it does take longer than I'd like.

Peace and love. X

Tuesday, 30 June 2015

Learning To Take The Good With The Bad

Today has been a very confusing day. I've been up and down like a yoyo and for some reason I'm sitting here telling you, the folk of the internet, all about it and I'm not entirely sure why but here goes.

I had three appointments today, one with a nurse, one with a doctor and one with my consultant (the guy who sorts my belly out).

The first one with my nurse went very well. Boom. (1/3)

The second one with my doctor also went well. (2/3)

The third one, which is I suppose is the most important also went swimmingly. (3/3)

Except for during the last one, my consultant recommended that I visit a specialist for the problem I am currently seeing my doctor for, just to be on the safe side. That's all good, right? Well, apparently not. For some reason I left the room at the end of my appointment, walked out of the hospital and burst into tears. The sheer thought of going to see yet another doctor for some reason, at that moment, just seemed way too much. 

The truth is, it all gets a bit much sometimes. And that is okay. I sat there for a few minutes with my mum, got pissed off, cried it out and then I was okay. I reminded myself that for the most part I am lucky. At least I physically managed to make it to three appointments today. I managed to get in and out of London feeling okay. Hell, I've been to Amsterdam and back this month. I got my grades back from my first year of uni today and found I got a 2:1. Most things are going pretty damn well and this is just a bump in the road.

It's not always bad, but it's okay to be sad when it is. Remember that. 

Sunday, 3 May 2015

University With a Chronic Illness (It's Possible!)

I am fast approaching the end of my first year at university and I as I'm typing I can't quite believe I've made it here! Minus a few blips along the way, it's been amazing. I've made some fabulous friends, learnt so much more about myself, gotten to know a new city and opened up so many more creative doors than I ever knew possible. 

Many of you know I suffer from a chronic illness and that was one of the things that scared me most about going to university. How was I going to handle it? What if I got ill? What if people didn't wanna be friends with me? All those worries seem crazily insignificant now and I've made a short list to reassure and help anyone with a chronic disease who is thinking of applying to university because even if the tiniest part of you thinks you want to go, do it and don't let your illness hold you back!

Don't be afraid to ask for help.

If you've not been well and are finding it hard to hand your work in on time ask for an extension. My experience from this year is that staff are incredibly understanding and want you to succeed. I've not been well personally for the last few weeks and have had to ask for a few deadlines to be extended and felt bad about it... I have learnt that I shouldn't. Staff would much rather give you an extension and get to mark a good piece of work than have you hand in a pile of crap and leave you knowing you could have done much better. As one of my friends said to me the other day 'Extensions were created for a reason' so don't feel bad about asking for one. 

Take time out if you need it. 

I am someone that absolutely hates missing class. More than anything. Honestly, I feel really guilty if I don't go in. But I have learnt that if I can't make it to class sometimes - it's okay. It really is. Having an illness is a legitimate reason to not always make it in so don't feel bad about it, don't stress about it and don't push yourself to do things you can't physically do. As long as you catch up with your work when you're feeling better, you will be okay. 

Be upfront and open about your illness.

This applies to both the university itself and your friends. Before I arrived at university I told them I had an illness and they responded with reams of support. They told me how to apply for disabled student allowance, who I could talk to if I ever needed any help and that I shouldn't worry about coming to university. When I arrived, I was also very upfront about my illness to new friends. One of the major factors for me was that I cannot drink very much with the drugs I am on, so it was a pretty easy to thing to slip into conversation. I found that telling people in a straightforward way allowed them to feel they could ask me questions if they wanted to better understand how it affects me, and now they know, it's less of a mystery when I can't always do things.

Find good friends (or let them find you).

I mentioned before that being open about your illness (I find) is important because it allows your friends to understand that if you're not feeling well, you're probably really not feeling well. And, well, if they don't understand then they really are not worth your time. I've been pretty damn lucky with the friends I've made here because they're really understanding when I'm unwell. Instead of pressuring me to go out, they come over to my flat for a cup of tea instead. Ent that lovely? I really do appreciate it more than I think they realise. 

Don't overdo it.

Right, this is probably the shittest one. You might have friends who go on a five day bender and honestly? You're probably not gonna be able to keep up, and if you do, you'll probably end up paying for it for a long, long time afterwards. But then again, that is me speaking from personal experience and knowing that my body wouldn't be able to cope with that. Listen to your body. That is one of the most important things. If you're feeling really well and up to going out and then straight to your 9am lecture, screw it; go for it! But if you are a bit under the weather, it's not worth tiring yourself out and making yourself feel worse. There will be plenty of other times and like I mentioned before, if you make great mates, they'll understand.

I think I rambled on a little more than I meant to there but hey, ho. There's my advice for going to university with an ongoing health problem. It is possible and it is bloody worth it. Stay happy!


Saturday, 18 April 2015

Why the f*** should I vote?

With the UK general election fast approaching, we're constantly getting told to "vote me!" "vote me!" "VOTE ME" by different political parties and the honest truth is... many of us don't why we should even bother to vote at all.

I wasn't interested in politics until around a year ago which is when I realised that it is important. It affects everything to do with our daily lives. For example: you're a student, do you want to have a government that raises or lowers tuition fees? If you're in full time work and think you're being taxed unfairly, or that the tax you pay is being spent on inappropriate things let your voice be heard. Do something about it. 

I think the reason a lot of us young people don't vote is because it's a daunting subject to approach, especially for those of us who don't know where our opinions or values lie when assigning ourselves to a political party, but there are easy ways to figure it out.

A friend of mine linked me to the website which is a brilliant site to determine your political standpoint. All you have to do is select the issues you are passionate about and pick the policies you agree with the most. At the end you have a fancy little pie chart showing which party you agreed with the most. Although this takes a little bit of time, it's so worth it. Whether you do it on the journey to work, while you're waiting for a friend or whether you just have some time to kill anywhere, it is worth it. 

I also follow parties I am interested in voting for on Twitter, so that I can have a little taster every day of what they find important and see if I agree. Watching things on TV such as the leaders debates or the news, even if it's just on in the background, will also help to gage who you would like to vote for. We are privileged enough to live in a country that allows us to have a say in our government and I believe we should take that opportunity and never look back. Those suffragettes didn't protest for nothing, you know. 

Remember! : register to vote! 

Registration to vote closes on the 20th April 2015 and if you don't get your name down, you won't be able to vote. All you need to do is visit and have your National Insurance number handy and it'll all be done in less than 5 minutes. 

Happy voting!

Sunday, 5 April 2015

Hello! (Again)

It's been a long time since I've blogged and the reason has been my internal battles with myself;

"Do I want to set up another IBD blog?"
"...but then I want to talk about other things, where do I do that?"
"Should it be the same blog?"
"Should I make two blogs?"

And on and on and on until I decided to just shut up and blog about anything and everything!


Welcome to my new blog where I will talk about whatever tickles my pickle!! 

I'll be posting an actual proper blog post soon!