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“It’s not about you!” or being selfish when you’re chronically ill

Published February 19, 2013 by crazyinpink

I felt like screaming at him “Shut up! It’s not about you! You haven’t done anything. I don’t even care about what we’re talking about. I’m just sore! It’s nothing to do with you!!”

Moments like this, although not frequent, are familiar to those of us living with chronic pain and especially an invisible illness. Something changes inside you and you go from being normal to suddenly having pain or discomfort. If you’re in the middle of something, your whole demeanour changes.

I go quiet, I concentrate on even breathing and my posture ranges from hunched over to leaning back – anything to try and ease the pain.  When this happened on Saturday, in the middle of a day of conference organising with Best Friend, he immediately thought he had done something wrong and went on the defensive.

It’s happened before and it’ll happen again. Best Friend isn’t the most confident person in the world and, in his socially awkward ways, assumes he is to blame for any slight change in my attitude or appearance.

Last year, during the most awkward weekend of my life, I cried in front of him while we stayed in a B&B in Ireland. For months he kept on about it, asking me to tell him what he had done wrong and why he had upset me. It was only in a surge of embarrassing boldness, I finally told him that I had an abscess that weekend which was causing me considerable pain and discomfort and I couldn’t have told him that when we were there.

Sometimes, I feel so helpless about what my body does without my permission. I could be fine, working away, smiling, spending time with friends and two seconds later, my insides are spasming and it feels like a rusty hook is dragging across my pelvis. There’s no big announcement or event that precipitates the change. There are no signs. It just happens. But the timing sucks sometimes.

So it happened on Saturday, while going through a budget for our conference, a cyst that I had only noticed the day before became so angry and determined to disrupt my relative peacefulness.

Best Friend and I have a weird kind of relationship, where we’re close enough to share everything but only at certain times. If I volunteer information, he usually recoils and feels awkward. I have to keep it until he asks, only then do I know he’s ready to handle it. And he does ask, eventually.  He’s been so good during the last few weeks, phoning me every day, sending me cards. When I returned to the office for the first time on Friday, he spent all day hugging me and, for the first time ever, kissed me on the cheek. He was truly happy to see me.

Now that this cyst has reared its ugly infectious head, I know I’m more tired, more grumpy and less “me” than usual. My body is fighting an infection while its still recovering from having stuff scraped out of it.

I tried to tell him I was sick but, in his head, I’ve had an operation and so I should be better.

I know I’m being selfish but I just felt like yelling at him. His insecurities irritate me and I don’t really know why. He is only trying to help, he cares about me and wants to know what he has done to upset or annoy me. But, right now, its not about him. Its about me.

 

Of course, even saying that makes me feel worse. 100% Bitch.

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A Digital Fairytale – Part Two

Published December 6, 2012 by crazyinpink

Melody sat, trying to find the words to express this odd flirtationship she was in, but somehow failing.  Her tendency to turn everything into something funny usually worked well.  Her friends always expected gossip and amusing anecdotes about her escapades, usually involving a guy.  But this time, her story-telling was doing her a disservice.  She was giddy and excited about her romance with Edward and yet, scared of being taken in by someone she still hadn’t met.  Instead of being happy for her and encouraging her, the way she wanted them to, her friends seemed confused and assumed she couldn’t have any real feelings for this guy, it was just a bit of fun.  It had started like that.  But since that night they’d heard each other’s voices, her feelings had changed.

Talking on the phone made Ed seem more real.  She knew what he sounded like, the tone of his voice and how he laughed.  It brought all the texts and messages they had shared to life.  She longed to know him in real life, see if their virtual spark translated to reality. 

Edward wasn’t perfect by any stretch of the imagination.  She knew that.  He was moody and insecure, needing constant reassurance that she still liked him.  Traits which might have put her off if they belonged to anyone else, but she was still drawn to him.  Still felt that stupid grin spread across her face when she read his latest message. Maybe because they were at a distance, they were being far more honest with each other than was usual.  For Melody at least. 

This honesty came across clearly when Edward confessed his dream of waking up every day next to her.  All he wanted in the world was Melody.  She didn’t quite know how to react to such admissions.  She was never one to initiate talks of feelings and found it difficult to express herself in such situations.  Edward, afraid that he had overstepped the mark, assumed he had scared her off when she didn’t reply straight away.  But she needed time to work out how she felt about him saying such lovely things.

She often needed to take time out from their intense communication, not only to process what was going on in this increasingly bizarre scenario, but also to live her life.  On more than one occasion she had to tell him that she couldn’t be glued to her phone all the time and reassure him that it didn’t mean she had gone off him in any way.

They were talking of visiting each other, Melody’s friends insisting she go to meet him with someone so she wasn’t alone.  She trusted Ed but knew that she had to be smart about this.  The trouble was finding someone willing to go to another country (albeit one only a quick flight away).  During the time she was thinking about this, Ed’s messages began to change slightly.  

He stopped sending hearts and his tone was slightly colder, as if he was pulling away.  Melody, not the best at negotiating relationships, asked him why. Ed had been thinking about the difficulties of a long-distance relationship and how tough it would be if they pursued it.  Melody had thought those thoughts too but had talked herself into the ‘wait and see’ school of thought. But Ed, the more pessimistic of the couple, couldn’t talk himself round.  He said they were kidding themselves that they could have something real.

Melody didn’t know how to feel.  She knew Ed was being rational and she, more than anyone else, appreciated rationality.  On the other hand, she felt a little heart-broken. She had shared a lot with him and had let herself fall head over heels for someone she had never met. Ed had fallen for her too, she knew he had. 

Agreeing to remain friends and text in a platonic, non-committal way, they continued to talk.  Both of them knowing their feelings were too strong to ignore…

 

A digital fairytale?

Published November 20, 2012 by crazyinpink

Once upon a time, there lived an relatively ordinary girl.  Her name was Melody and, although not blessed with the technology gene, she did have a soft spot for the world of Twitter.  She joined the twittersphere long before other people she knew in real life and became quite addicted to tweeting amusing comments, sharing her opinions on her favourite TV shows and posting pictures of new additions to her shoe collection.

One day, while watching a particular favourite crime show, Melody tweeted and retweeted lines from the show.  It amused her to feel like she was watching with a whole room full of people and their opinions rather than on her own, in her pyjamas.

One tweet was particularly funny and after retweeting it, Melody curiously looked through the rest of the user’s tweets and deeming them equally amusing, followed him.  Barely a minute had passed when the tweeter struck up a conversation with her, first about the show they were both watching but then turning into a general chat. Melody was flattered by the interest and attention and kept the conversation going until she went to bed.  Earlier that day, she had bumped into her crush and the experience had left her certainly feeling crushed herself.

The next morning, the mysterious tweeter of the night before began chatting once more.  He was called Edward and was the same age as Melody with similar interests and tastes.  She enjoyed talking to him and smiled when she heard the familiar ping of a new message. It wasn’t long until they switched to private messages, getting to know each other and asking questions.  Edward seemed so charming and sweet, saying that he was pleased Melody had retweeted him because he enjoyed talking to her.  He asked if they could be facebook friends and Melody agreed.  She was intrigued and wanted to know more about him.

Soon enough, Edward asked for her number.  It had been quite a while since a guy had asked for her number, Melody thought.  He began texting her every day, being equally cute, dorky and ridiculous in his messages.  She found herself confiding in him and being much more confident by text than she was in real life.

After a month of texting, Edward and Melody knew each other pretty well and decided that it was time for them to talk on the phone.  Both being quite shy, the conversation was hesitant at first but they quickly began talking like old friends.  Both of them were on facebook at the same time and, in the middle of telling Edward a story, Melody heard her laptop pop. Looking at her screen, she read a message from him saying how much he loved her voice.  She couldn’t help but grin at the cheesiness of it.  The phone call lasted an hour before they said goodbye.  It wasn’t really goodbye as Edward continued to send Melody facebook messages confessing how he felt about her.

Melody could hardly believe her eyes as Edward admitted that he was falling for her and wanted her to be his girlfriend.

Her tummy felt full of helium and also, kind of like she was on a rollercoaster.  She stared at the screen not knowing what to do.

She was torn for a number of reasons.  On one hand, she really liked Edward, loved talking to him every day and he was totally her type.  Had they met in real life, she was nearly sure she would have agreed to date him.  On the other hand, she didn’t want to be another story about being duped by someone on the internet.  She had to be smart and realise that until she met him, her feelings weren’t real.  She was falling for the idea of him and not the reality.  Equally, she knew that he was falling for the her that she wanted him to see.  There were things that they disagreed on, fundamental parts of life like what they believed.  Were those differences too great to be ignored because of some charming words and a cute personality?  These thoughts rushed through her head as she blinked, confuddled, at facebook.

Edward, as he did when saying something risky, tried to brush it off as a joke, something silly.  But Melody knew how he really felt.  She also knew how she felt in return.  In spite of everything, she knew she was crazy about him. There was just one problem…he lived in a different country.

Breaking down in public

Published October 10, 2012 by crazyinpink

People tell me I’m strong.  I like it when they do because it implies that they have an appreciation of what I have to deal with in my life.  I also don’t like it because it makes me feel like a fraud.  Sometimes I don’t feel like being strong.  Sometimes I break down and can’t see how my life will ever be what I dreamed it would.  I haven’t felt very strong lately.  There are a few reasons for this.

The Guy

I did a Brave Thing and asked out the guy I like thirteen days ago (now that I’m counting or anything) and he hasn’t replied.  Not only am I hurt and rejected but I also can’t help but feel a bit stupid.  I really thought he liked me and not in that way girls usually trick themselves into looking for ‘signs’ and hidden meanings.  We got on really well and he used to invite me out with his friends, tease me, help me, always took an interest.  I’m as guilty as anyone for over-analysing men (or ‘manalysing’ if you’d prefer) usually just for a bit of a laugh.  I’m not an OTT giggly girl who NEEDS to have a boyfriend in order for her life to have meaning.  I’m not even someone who is desperate to get married the older they get (although I know a lot of people like that).  If anything I’m hopelessly pragmatic when it comes to seriously considering a relationship.  I love flirting but actual relationships I take seriously.  And when I weighed up everything I knew about him, I thought I was making a good decision with this guy.  He can be quite shy and I thought I’d go for it since I no longer work with him and I won’t be seeing him any more.  But I got it wrong.  And now, ironically, I realise how much I like him and how I miss hanging out with him.

The Conference

Best Friend and I were asked to organise a conference to be hosted by our university next year.  This conference is held at a different university every year, I’ve been to the last three, Best Friend to the last two. We were advised to have a committee to help us.  Our committee met for the first time last week.  Aside from Best Friend, the rest are girls in their final year of PhD. Most of them are lovely and very helpful.  But one has already made it clear that she doesn’t like me.  I don’t know whether it’s because I’m ‘new’ and a first year in a position of authority, though I have the most experience.  It could be because I’m on such friendly terms with the staff and have contacts throughout the university.  There are few parts of uni where I have not worked at some stage over the last five years so I know a lot of people as our staff member on the committee was quick to point out.  It could just be because I am the complete opposite of her.  She is rich, I am poor. She is serious, I have a pink Little Miss notebook. She is married with her own house and grounds, I am a single girl who still lives at home.  Her attitude throughout our meeting made it clear that she thinks I am not someone worth listening to. It didn’t upset me really, more made me think ‘what have I got myself into?’ I have to work with these people for the next six months.  I’m only starting my PhD career, I don’t need enemies already.  That night I went out with my Toyboy and watched the latest Will Ferrell movie then had a McDonalds.  My mood was considerably improved after this.

The Concert

Saturday night was a big concert with my choir and orchestra.  I turned up to soundchecks raring to go but my good intentions quickly evaporated when I discovered that I was sitting in the far corner of the stage.  It was actually a separate stage a good foot lower than the rest, added on the end almost as an afterthought.  There were no lights or microphones and my two fellow sopranos and I were surrounded by altos. We couldn’t even hear the rest of the choir and could only occasionally see the conductor.  This isn’t a big deal except that this is always what happens at concerts.  The last three years my friend and I are always put into the back row at the end as if we’re distant relatives that no one wanted to invite to the family wedding so you seat them as far away as possible from everyone else.

Pain

The last week or so I have really struggled with my pain levels.  Sometimes it seems to operate in weird cycles, like for a while it’ll constantly wake me up in the middle of the night or just appear at a certain time in the day.  At the minute, it seems to crop up just after I’ve eaten. On Friday I had lunch with a friend and barely half an hour after I’d finished my pasta I was bent in double over the table with painful spasms. I was already a bit cheesed off at the concert on Saturday then I discovered that I couldn’t eat any of the tea provided for us.  It all contained fish, eggs or cheese.  My friend ate an egg and onion sandwich and found a bit of shell in it so quickly decided she wasn’t eating any more.  Her boyfriend was called on and arrived soon after with some chicken nuggets for us which we scoffed in a darkened room so we wouldn’t get caught.  In our usual pre-concert prayer meeting, I felt the familiar twinge of my ovaries deciding they were going to wreck havoc on my body.  I spent the twenty minutes before we went on stage alternatively hunched over and pacing, trying distraction techniques to help relax my muscles. The heat patch I slapped on in the interval did no good and by the time I came off stage I was wrecked.

I completely broke down in the dressing room and the tears started.  My friend quickly pulled me into a hug and let me cry onto her shoulder.  I don’t often cry in public so when I get teary it freaks people out.  I just felt so worthless.  I was exhausted and couldn’t keep up appearances any more.

Have you ever kept going even though you want to stop?  Fueled by the thought that everyone thinks you’re strong so you mustn’t let them down by showing a sign of weakness.  I just want to curl up and watch old episodes of Friends until I feel strong again.  Right now, I think I need to let myself feel weak for a little bit.

 

One Lovely Blog Award

Published October 8, 2012 by crazyinpink

Not only am I completely flabbergasted by another award from the ever awesome Rachel at doilooksick but I am so excited that it’s pink!!!

one lovely blog award

If you are one of the nominees for the One Lovely Blog Award you must do the following:

– Thank the person who nominated you and link to them in your post.
– Share seven unknown things about yourself.
– Nominate other bloggers and blogs that you like or admire – 15 or so if possible.
– Contact the bloggers you nominate to let them know and to link them back to your post.

My Nominator: Rachel is beyond cool.  She is a wonderful, inspiring girl who kicks butt on a daily basis.

Seven things about me:

1. My favourite colour is pink.  Hot pink to be exact. It is my signature colour.

2. There is a Spanish hot chocolate drink called Cola Cao that I am obsessed with.

3. I have a red acoustic guitar called Betty and a pink electric called Penelope.  I wish I had more time to play them.

4. My favourite Disney princess used to be Ariel but then Tangled came out so now it is a very close tie between Ariel and Rapunzel.

5. I’ve always loved the Rapunzel story.  This might have influenced the fact that my hair is three feet long.  When it does what I want, I love it.  Other days it is just too much trouble and I wear a hat. (Luckily, I suit hats)

6. I’m a bit of a Harry Potter nerd. I read the series at least once a year and every time I enjoy it.  When I am hanging out with guy friends I feel a lot like Hermione.

7. There is only one type of cereal I like which is this awesome maple and pecan cluster stuff.  My brother then decided he liked it so a box went from lasting me a week to lasting a day.  Now I bulk buy three or four boxes at a time and leave one in the kitchen and stash the others in my bedroom behind a bookcase.

My nominees:

1. http://andreahughf.wordpress.com/

2. http://endohope.org/

3. http://painfighter.wordpress.com/

4. http://ohwhatapain.wordpress.com/

5. http://lamartin91.wordpress.com/

 

 

Beautiful Blogger, me?

Published September 26, 2012 by crazyinpink

Later than promised, I would like to say a huge thank you to the lovely Rachel at http://doilooksick.wordpress.com/ for nominating me for the Beautiful Blogger Award.

To accept the award, I post this image, write a little tidbit about the blogger who nominated me, write a list of 7 things about myself, and finally, nominate 7 bloggers to receive this award as well.

I’m still not quite used to the world of blogging though I’ve been here for several months and one of the greatest people I’ve met here is the wonderful Rachel.  Her blog always makes me smile and the work she does to raise awareness of chronic pain and invisible illnesses is really admirable.  I love reading what she’s up to and I admit, I’ve plagiarised some of her phrases to help explain things (dishes and spoons especially). She is a true endo sister and I’m honoured that she thought of me for this award.

Okay, now seven things about me.

1. I am about to start a PhD in History.  This is simultaneously exciting and terrifying with a pinch of ‘what the hell am I doing?’

2. I own about 100 pairs of shoes.  My life motto: Life is short, buy the shoes. (I also LOVE the ‘Shoes’ video too)

3. Everyday I wear incredibly bright colours because I think it is hard to feel sad when wearing bright yellow.

4. I have had a disease called endometriosis since I was 13.  I’m currently waiting on an operation to remove diseased tissue throughout my pelvis.  It causes chronic pain which I live with every day but I try to not let it beat me.

5. I own every single piece of QI merchandise, including every single episode.  It is the best show ever!  When I finished school I went to London to be in the audience of a recording.  My dream job would be to be a QI Elf (researcher).

6. I might be a teensy bit obsessed with a certain pale cheekboned gentleman called Benedict Cumberbatch.

But, really, how can you not be in love with him?

7. I sometimes think that if I didn’t have all the health problems I have, I wouldn’t be the person that I am today.  I wouldn’t have true friends who are so precious and genuine and I wouldn’t appreciate the ‘good days’ because I wouldn’t really grasp how bad ‘bad days’ can be.

And finally, the bloggers I’d like to nominate are:

1. http://lifeandendo.wordpress.com/  another endo sister sharing her experiences

2. http://endohope.org/ providing much needed info and talking about all the ways endo affects you

3. http://whatvioladidnext.wordpress.com/ honest and inspiring (and given me a justifiable reason to eat ice cream after internal examinations!)

4. http://wincylui.wordpress.com/ always makes me smile

 

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