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All posts for the month August, 2012

Sunshine Award

Published August 29, 2012 by crazyinpink

 

Thank you so much to Tracy at http://ohwhatapain.wordpress.com/ for the nomination.  What a lovely surprise from a lovely person!  Her blog is very well written and inspiring to all those who live with chronic pain and manage to retain a sense of humour! Cannot recommend enough.

I am honoured to receive a Sunshine Award.  It continues to astonish me that anyone even reads my random little thoughts on life.  I decided to start this blog as a way of working through the confusing situations I find myself in as a young woman trying to fight a chronic condition while also striving for a somewhat ‘normal’ life.

Here are the rules:

If you are nominated you must include the link in a blog, linking to the person/blog that nominated you. You must answer some questions and nominate 10 fellow bloggers and link their blogs in your post. Let the people you have nominated know that you have nominated them!

Here are the questions:

1. Who is your favourite philosopher?

Controversially, my favourite philosopher has to be Walt Disney.  Strange, yes, but this is the man who brought us such gems as

“All our dreams can come true, if we have the courage to pursue them.”

2. What is your favourite number?

5

3. What is your favourite animal?

I have a fondness for penguins.  Many due to the Penguin of Death who can kill you in any one of 412 different ways.  I have quite a large collection of his memorabilia.

4. What are your facebook and twitter ?

How boring but I keep my facebook and twitter separate from my blog, which is also why my name doesn’t appear here either.  Just for the reason that I use this blog to be 100% honest with myself whereas with twitter I am always conscious of who knows me and reads it.

5. What is your favourite time of day?

I’d have to say 9pm. I have a rule that I don’t study past 9pm so that my chill out time.  The best tv programmes are usually on at that time.

6. What was your favourite vacation?

A few years ago, I went to Paris with my friend.  It was a spur of the moment, post break-up holiday and we did the whole thing for less than £100.  I discovered my knack for discount holidaying and we managed to squeeze every possible tourist activity into our 4 day break. Plus, I got my photo taken with Capt Jack Sparrow in Disneyland. 🙂

7. What is your favourite physical activity?

I’m not a major fan of physical activity but I have slight talent in archery (which I count as a sport).  I also love dance games and remain unbeaten within my family in Wii dancing games.

8. What is your favourite non-alcoholic drink?

Chocolate milkshake every time.  I once ordered one during a uni society meal at a posh Italian place and was applauded by my fellow diners.

9. What is your favourite flower?

Tulips or giant daisies. Or anything bright pink.

10. What is your passion?

Religious History! 🙂

My Ten Nominees:

  1. http://whatvioladidnext.wordpress.com/
  2. http://endochick.wordpress.com/
  3. http://rozzychan.wordpress.com/
  4. http://lifeandendo.wordpress.com/
  5. http://lifeandendo.wordpress.com/
  6. http://jumpforjoyphotoproject.wordpress.com/
  7. http://doilooksick.wordpress.com/
  8. http://painfighter.wordpress.com
  9. http://ohwhatapain.wordpress.com/
  10. http://chronicpainsurvivor.wordpress.com/
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A hug of compassion

Published August 26, 2012 by crazyinpink

When an invisible illness controls your life, some people find it hard to deal with.  They can’t square the ‘new you’ with the healthy you that they used to know.  When that illness causes chronic pain it is extremely difficult for anyone who doesn’t know the unbearable torture of living with chronic pain to really empathize with what you are going through.  When that illness is a gynecological disease like endometriosis, it is not easy to explain and makes people uncomfortable.  Especially people who are not blessed with the wonderful reproductive system of ovaries and a uterus.

Lately, I have been making an effort to talk more about my condition.  The only way to raise awareness of the disease is to talk about it. Bizarrely, I found it easier to make speeches in a room full of strangers (all much older and wiser than me) than to simply talk about it with my friends.  It’s crazy when I think that I talk to my friends about all major aspects of my life but neglect the part that has really changed me the most.  The part that has a bearing on all the other parts.  Why is it that I’m so comfortable talking about my job, my studies, my love life, my dreams, my passions yet I couldn’t bring myself to talk about the thing that keeps me up at night, the thing I worry most about, the first thing I have to think of in every situation?

This week I was ambushed with an in-depth, no-stone-unturned conversation about my endometriosis.  I met up with Best Friend for the first time in weeks.  A lot has happened in both our lives, his with his PhD, mine with my surgery.  We swapped stories and caught up with each other over lunch.  It was great to chat and I was happy that our friendship was back on track. We decided to go for coffee and on the way, Best Friend asked if it was okay to ask me questions about what was wrong with me. He caught me slightly off-guard but I agreed.

He only found out about the endo after I took part in an awareness article back in March.  It was humiliating and I was completely embarrassed when he said he had read it. We hadn’t really discussed it since.

It was clear from our conversation that since then, or maybe just since my operation, he had been educating himself on what exactly endo is.  He led the conversation with an opening statement, one which I am sure he had practised beforehand.

‘I had no idea how serious it was. I mean, I didn’t know all that you went through every day, on top of everything else in your life. It must be so awful. And your best friend is a boy so you must’ve thought that you couldn’t even talk about it with me. But I want you to know that you can. I’m here and I really want to understand everything that you’re going through.’

He was so earnest and honesty was etched all over his face. He continued by asking me concise questions he had clearly been thinking about.  Questions about the medical aspects, the implications, the emotional affect it has on me.  Although it was not what I expected from our friendly catch-up, I figured I owed him the same level of honesty in return. I admitted how difficult things are for me sometimes, I confessed to worrying about ever finding someone who could cope with all the extra baggage I come with.  In an uncharacteristic move, he touched my arm and told me I needn’t worry, I was ‘stunning, a stunning girl’. That flummoxed me.

The issue of sex came up as he had read about all the symptoms and was asking me which ones I did and didn’t experience. We’ve casually talked about this kind of thing before but never in such a serious conversation.  I asked if he really wanted us to talk about it and he did. So, I told him about the other gynae problems I have, the constant infections and cysts and the mother of all abscesses I had earlier in the year.  To try and explain how bad these things can be, I brought up our weekend in Galway at which point he interrupted to point out that he never touched me. In utter bewilderment, I then stared at him while he said ‘I might have looked while we were in Galway but I never touched’.

In some way, it was a strange kind of relief to find out that I hadn’t imagined the weird tension between us in Galway.  But more than that, it was a relief that a friend, my Best Friend (a boy for that matter!), had gone to so much effort to try and understand my world.  I really think that he now gets me so much better than he did before.  He has a bit more empathy now and, hopefully, this brought us back to the close friendship we once had.  It felt like a giant hug of compassion.

How important it is for endo sisters to feel like someone has compassion and is trying to understand

Skipping in public

Published August 22, 2012 by crazyinpink

Yesterday, I had an after-work thing with Butter.  It was quite unexpected.  It wasn’t a date or anything but I was so giddy afterwards that I actually skipped for a bit.  In public. 

I don’t know what came over me but on a random trip to the kitchen, I stopped by Butter’s desk and mentioned that I had a few hours to kill after work.  I asked him if he was free to go for a coffee or something.  A momentary flicker of surprise crossed his face.  He quickly said yes and invited me to come round to his since he lives near work.  It was at this point that I realised what I had said.

Now, back in my Jam phase, I used to agonise for hours over how to casually suggest a casual cup of coffee with him.  Casually, of course. I spent 9 to 5 planning what to say, practising how I was going to say it.  I never worked up the nerve to actually do it.  When I eventually asked by text, I got a polite brush off.

Yet, there I was.  Only days after I stayed late at work on Friday afternoon just to keep Butter company as he waited for a package to be delivered.  I loitered and chatted for more than half an hour after everyone else had escaped to the pub.  It was great to be on our own and not be constantly interrupted. Somewhere in the midst of our conversation he gave me his phone number.

Yesterday afternoon passed in a state of anticipation.  I was simultaneously impressed by my own spontaneity, excited about hanging out with him away from the office and anxious about how awkward it could be to go to his house.  We would have to walk there with Jam to the house where they both live. Was it going to be just the two of us? Or would we be in a strange ‘friendzone’ trio?

In reality, I needn’t have worried.  At the last minute, a technical issue meant most of my team had to stay late to rectify it. That meant Jam.  So, Butter and I set off together.  We had a pleasant walk out of work, chatting away.  I pointed out a milkshake place I had been to a few weeks ago with a nearby gym that had a balcony.  It had proved quite hilarious to sit and drink milkshakes while watching poor souls lunge and squat just across the street.  He suggested we go there. 

I went on ahead as he popped into his house, literally a stone’s throw from said milkshake place. He, for some inexplicable reason, got changed.  We sat for over an hour talking.  It was really nice and really easy. There were a few quiet moments, mainly when we were both too interested in our milkshakes but it didn’t feel awkward.  It was great.  When we parted, I had to go to a friend’s, he was going to football, I contemplated hugging him.  I didn’t, a huge group of people on their way to a gig came at us at that precise moment. 

I walked slowly back to my car.  I was grinning to myself and had that giddy feeling I haven’t felt in a long time. It wasn’t a date but it was the closest I’ve had in a while. Caught up in my own head, I forgot myself and skipped a few paces. My phone beeped. Still, grinning I checked it, assuming it was my friend I had been texting earlier.

It was a tweet from my Fairy Godmother. Thanking me for covering her shift in work and saying I was such an awesome friend.

Tiny bubbles of guilt fizzed in my giddiness. I haven’t spoken to her about this whole thing yet. Nothing had happened between Butter and I. But I still felt guilty.  I had asked him on a pre-date. Surely that’s a violation of the code of sisterhood. She told me a week ago that she was over him. She still has no idea of the feelings I’ve realised I have. I’m seeing her on Friday and asked if we could meet up before the scheduled event (a treasure hunt) to catch-up.  I have to tell her how I feel. Nothing can happen until I do. Nothing might happen anyway. I just have a feeling… Our paths haven’t crossed much in work today but I caught him glancing at me repeatedly while talking to someone a few desks away. Daydreaming early, I imagined how our goodbye might have been if I had just hugged him.

The giddiness is back. I just need it to de-carbonise.  

A little bit of twitter-inspired philosophical wonderings…

Published August 21, 2012 by crazyinpink

A new endo twitter account appeared a few days ago.  The general point of the account is to provide support and some kind of comic relief for endo fighters (I dislike calling us ‘sufferers’ because it kind of implies that the disease controls us, at times it does feel that way but I much prefer the term ‘fighters’).  I noticed the account quite early on (being somewhat addicted to twitter) and as I tweet about my life with endo quite a bit, I have been retweeted by the account. 

I like the account.  I think it is witty and honest and relatable.  I don’t agree with every tweet but I think it is a good thing and certainly helps bring endo sisters together because it is so active.

However, I noticed the other day that not everyone is supportive of this new account.  I saw a tweet which piqued my curiosity and so I read the conversation surrounding it.

One endo fighter took an aggressive tone when she asked the girl who owns the account to leave her alone.  She claimed the account was stupid, there was nothing at all humorous about endo and it was flippantly making light of her pain.  The conversation continued with more and more bitter comments from her side.  To her credit, the girl who runs the account responded very maturely and diplomatically to what was essentially, verbal assault.

This little, seemingly insignificant, exchange made me think about how people can react to something as life-changing as a chronic illness.

There are always going to be people who are naturally optimistic and upbeat, who keep going no matter what and as Eric Idle would say ‘always look on the bright side of life’. (do do do do do do do do)  Likewise, there are going to be people who think their world has ended and fail to even look for the light at the end of the tunnel.  Most of us will oscillate between the two extremes during our own individual journeys.   The thing is, to keep travelling.

Since I got really ill three and a half years ago I have experienced my fair share of ways to cope with it.  When I first collapsed and in the weeks following, sheer panic occupied my every waking minute.  My body was being attacked from the inside and I didn’t understand why.  I wasn’t having periods yet I was experiencing the worst kind of period pain x 100.  I knew I had endo and it had been removed a year earlier, why was the pain back?

Slowly, I adjusted to my new kind of life.  I had to wear skirts instead of jeans (something which was entirely alien to me), tasks I could have done in a day all of a sudden took me at least three or four and my gorgeous, bass playing boyfriend broke up with the new me.  I resigned myself to waiting.  I was waiting to see someone, waiting for them to tell me it was the endo again and waiting for them to take it away like they had before. After months of waiting, I was told it wasn’t endo.

I felt lost and confused.  It felt exactly the same as it had done before, only worse. My GP, convinced I had Irritable Bowel Syndrome, put me on stupid treatments to make me go to the toilet more. This I remember as the Embarrassing Stage. Documenting everything I ate, every time I went to the loo, describing everything that happened there. I was only 20 and I had a colonoscopy. Shockingly to the doctors, but not to me, there was nothing wrong with the inside of my bowel.

Frustration set in as time and time again I was put on stupid treatments that never made any impact on my level of pain.  Eventually, I talked one consultant (after he insulted me and suggested I lose weight) into giving me a MRI. The scan showed a multitude of cysts covering my ovaries.  The right one was practically hidden under the sheer volume, 13 that they could count.  This led to a referral to gynae for poly-cystic ovarian syndrome. They then decided to put me through an artificial menopause. This was the Nothing-Can-Be-Worse-Than-This-Hell stage when I hated everything and everyone, especially me. This was a low period as my body rejected the treatment and I ended up spending the Easter holidays in a hospital bed.

What emerged though was the new me. I began to accept that the magical solution I’d been holding on for might never come.  Instead of wasting this period of my life waiting for things to get better, I should make things better for myself now. I began to fight. I fought the doctors and insisted on recognition.  I stopped being embarrassed by my body and learned to love all of me, right down to the burns left by my ever-present hot water bottle. I realised that being ill and living with chronic pain has actually made me into a better person than I once was.  I have more patience, more sensitivity and found a strength I never knew I had. 

Things haven’t been easy. In November last year when my consultant changed his mind about my condition, I hit a really low point again but I bounced back. And I will keep bouncing back. However many times it takes.

Sometimes, we need a bit of humour and a bit of encouragement.  I understand why it can be hard to see the silver lining at times but if you don’t look for it, you’ll never find it. 

She reads magazines

Published August 13, 2012 by crazyinpink

I nipped out of the office at lunch time to head over to the shop.  The twittersphere detailed a certain Mr Cumberbatch being on the front page of the Telegraph magazine so I picked up a copy (and a half-priced chocolate bar).   It was only when I sat down at my desk to peruse the paper while eating my sandwiches that I realised the tweets I read were a few days old and the magazine only comes out on Saturdays.  Blonde moment.  I read the paper anyway and was suddenly taken back to my A Level Politics days of devouring world news and living off current affairs.  Although I never harboured any political ambitions I took two optional courses in Politics in my first year as an undergrad and again became an avid news-watcher.

Once I didn’t have to know exactly what was going on in politics, I fell out of the habit.  I am just not a person who can do something half-heartedly.  My mum describes me as very ‘black and white’ and I guess I am in some ways.  If I like something, I like it a lot.  Once I spent some time away from politics I couldn’t get back into it. It took so much time and energy and I have other passions which I feel more strongly about.  I’ll still raise my head and sniff curiously when there’s a general election or a public enquiry but I’m definitely not the newshound I once was. 

Embarrassingly, I’m now more of a magazine kind of girl.   Not celeb mags though *shakes head despairingly* I like fashion, shoes and shameless stories about getting in touch with the ‘inner you’ or how to talk your way out of a bad second date.  As such, I am an avid reader of Glamour and Cosmo. I enjoy just kicking back (usually in the bath), turning my brain off for a while and letting the bright colours and energetic journalism wash over me.

The title for this random musing comes from a song of a local band I used to like.  I only really went to their gigs because I was dating the bass player but some of their songs were annoyingly catchy and even now, after three years, I find little refrains going round in my head.  This song was about an intellectual guy frustrated by his attraction to a seemingly dim-witted girl and his attempts to successfully woo her even though they had nothing in common.  My favourite lines were ‘I’m talking Tolstoy while she reads magazines’ and ‘I buy her sweeties, but she’s got diabetes’.  And I’m sorry but if you rhyme ‘sweeties’ with ‘diabetes’ you already get a big thumbs up from me.  This song seemed to represent how Bass Player viewed our relationship.  He took the silly random things I do as symbolic of me not being overly intellectual.  We met at uni and he therefore knew how smart I am and the grades I get but somehow kept trying to introduce me to more cultural pursuits, buying me weird Japanese novels, making me watch arty subtitled movies and generally trying to improve me. 

The thing is, I know I am intelligent.  I’m not trying to blow my own trumpet but I’m comfortable in my cleverness.  However, I also know that I’ve only achieved the academic success I’ve had because I work damn hard at it.  I worked hard to get into a good grammar school where I worked hard for my GCSEs and A Levels to get into a great university.  I got a first class degree with honours, picked up awards, secured funding for my Masters and now stand on the precipice of a fully-funded PhD; all because of the hard work and determination I’ve put into my studies. 

The Academic Me is only part of my personality.  I can’t be that smart all the time, it would be exhausting.  I enjoy my downtime.  I love watching murder-based tv shows.  I have a pretty unhealthy obsession with Benedict Cumberbatch.  I like looking at shoes, buying shoes and judging the shoes of others. It makes me happy when I have brightly coloured nails and matching jewellery.  I have a fondness for the guy humour of Seth Rogen and Will Ferrell. And I like to read magazines in the bath.

When to give up on a crush

Published August 8, 2012 by crazyinpink

I can’t believe I’m even thinking this but I’ve been mulling it over in my head for the last few days.  I think it might be time to call it a day and let the sun go down on my flirtationship with Jam.

Last week, I asked him out for coffee.  He had to work late that night and so asked if we could reschedule for this week instead.  I managed to wear down my boss by constantly annoying him and wangled my way into getting a couple of hours of work. (Result!)  I saw Jam on Monday for a few hours and I’m currently sitting facing him but nothing has been mentioned about it.

I think the fog-crush has lifted a bit. I’m beginning to think that maybe all those little things that he’s said or done that I got excited about haven’t been signs that he liked me at all.  He is a really nice guy and he is positively lovely to everyone so him being so nice to me perhaps wasn’t such a big deal.  

And anyway, since my return to work someone else has been a lot nicer.

Butter instantly asked me how I am after surgery and, although he doesn’t know the technical details of my health problems, was asking me all sorts of questions about what happened and my future treatment.  In my experience, its only ever my closest friends that care enough to ask in-depth questions because they want to try to understand what you’re going through.  The fact that he had picked up on little things I’d mentioned on ‘bad days’ and was genuinely concerned when I had a ‘really bad, nearly ended up in hospital, mascara all down my face’ day, really surprised me.  No one in work has ever really strayed into the sticky subject. Except, of course, my Fairy Godmother.

Ah. The Fairy Godmother element. I could never be the girl who goes for a guy her friend has a thing for. I don’t even know if I necessarily want to pursue this intriguing new aspect of my love life. The rumours are rife that Butter is fond of me and there was that time he asked me to come with him and Jam to the cinema. I didn’t know what, if anything, I wanted from him. Then last night, after a weird date with Lucius that involved a moonlit walk singing Disney duets, I dreamt about Butter. The details are hazy but we were definitely together and I was really happy.

Dreams, of course, don’t mean anything…though, my first boyfriend when I was 15 was the result of me having a dream about him, telling a friend who then gave him my number. I came into work this morning in a new dress I’ve only worn once before. I told myself it was to distract from the fact that my hair needs washed.  But I had a jittery anticipation in my tummy.  I really wanted to look pretty today. Then, Jam arrived and greeted me.  I realised that the jitteryness was still there. Before I really digested this, I heard that Butter is off sick today and I felt a wave of disappointment crash over me.

Now I’m trying to work out exactly what is going on in my Tramadol-filled head.

Yesterday, I considered drawing a line under the Jam episode and start trying to move on.  Last night I had a great evening with a friend and even noted when he kissed me goodnight how easier things would be if I had feelings for him.  During the night, I dreamt about another guy and woke up happy.  Today, I just don’t know anything.

Unemployed and unimpressed

Published August 1, 2012 by crazyinpink

I am now, to all intents and purposes, unemployed.  It was only a part time job but I’ve worked there for nearly two years and I’ve always loved my job.

For some reason, I was excluded from the latest rota and when I asked why I was told that there simply isn’t enough work for everyone at the moment.  Last week I begged for some hours but was again refused.  I don’t know what I’ve done wrong to warrant such treatment.  I am far from impressed.

As I’m a ‘glass half full’ kind of girl, I’ve decided to look on the positives.

First of all, I have more time to work on my dissertation.  I sent the first chapter of it in on Monday.  6,000 words.  As unbelievably geeky as it is, I quite enjoy my research and I loved weaving it together to tell a story no one has heard before.

Secondly, I will be okay financially because I know that come September I’ll be bringing in a steady salary with my PhD studentship.  I’ll get paid at the end of August for the few days I worked in July so its only really the end of August and beginning of September which will be tough.  But I’ll cope.  I’ll cut back, no more magazines or fancy coffees.  I’m not going to be a Scrooge or a hermit.  I’ll still hang out with friends doing cheap things, crazy Tuesdays cinema outings with sweets from Poundland, movie nights at my house.  I’ve also taken on another tutoring student so that’s a little bit extra income.  I’ve arranged for my direct debit to be temporarily reduced. And, most impressively, I finally managed to chase up the prize money for an award I won in March but never received the cheque for. So, all things considered, I will manage.

Thirdly, and the most petrifying, I have been forced to do something about my confusing, stalling love life.  The last month or so has been quite bewildering as I’ve found myself in a bizarre love square.  The original situation was that I liked Jam and my friend, Fairy Godmother, liked his friend, Butter.  I am friends with both guys, although I find it easier to talk to Butter.  Then the office was buzzing with the rumour that Butter liked me.  Even Fairy Godmother suggested it.  The week before my operation, Butter invited me to the cinema with him and Jam.  I already had plans but what an awkward situation.  I have grown rather fond of Butter but I have had a crush on Jam for months so I think that I should persue that line of inquiry before even considering what to do about Butter.  I’ve been telling myself that I couldn’t ‘make a move’ on Jam or even hint that I liked him as more than a friend because we work together and it would be awkward if he didn’t feel the same.  That’s not really an issue anymore.   So, last night, after thorough discussion, I texted Jam to tell him that I had some time to kill between researching and meeting some friends to see The Dark Knight Rises on Thursday (tomorrow) and would he fancy meeting up for a coffee or something after work. He hasn’t replied and I don’t feel very confident that it’ll be a positive outcome.  But I think it’s better to find out exactly what is going on with him before addressing the Butter problem.

Finally, recovering from the operation has taken it’s toll on me.  I have been so tired since.  I’ve also been trying to work on my dissertation, though I have been mainly working from home but I now have to go to the archives to get some research done.  One of the wounds has become infected so I’m on antibiotics and takng salt baths daily.  Typical really.  I have such a low immune system, I pick up infections like pennies in the street. It’s not as sore as it was but I think I’m going to have a pretty impressive scar on my belly button when it eventually heals. I’m actually quite relieved I don’t have to worry about 8 hour days in work on top of everything.  There’s a lot whirring round in my brain since the operation and it’s revelations.  I’ve been finding it increasingly difficult to sleep (which is normally something I have a natural talent for) because I just can’t shut up my thoughts.  Maybe I should take up Legilimency…