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All posts for the month April, 2012

Why won’t anyone listen to me?

Published April 27, 2012 by crazyinpink

I went to my endometriosis support group last night. I love the group, its such a relief to know that other people actually know what I’m going through.  As much as my good friends try to understand, they don’t know exactly what its like to struggle with pain on a daily basis.  The girls at the group do and there are no boundaries, we can talk about anything even the things you think in your head that you could never say out loud. Nothing is off-limits.

Last night, we all told our stories since a lot of new girls have joined recently. There were about a dozen of us. I was the youngest, as usual. I listened to the new girls, all engaged or newly married, talking about their worries for fertility. I listened to the stories of the girls who struggled for years before going to this one consultant who finally believed them and diagnosed them with endo. This consultant is hero-worshipped by the group because he has a special interest in endo cases. He’s also my consultant.

I first went to him in August. He listened to my history and said it was endo. I had been diagnosed four years ago but repeatedly told since then that they had ‘cured’ it and there was no way it could have come back. He told me it was definitely endo. Because I had never been to this hospital before, he sent off for all my notes and scans, etc, before deciding on treatment. I returned in November, he said he didn’t think that it was endo anymore because nothing in my scans suggested it. I felt like I’d been punched. I knew that this was what was wrong with me and after building up my hopes, he had just destroyed them. It felt like a sentence passed on my life. Condemned to live in excruciating pain with no apparent reason forever.

When I returned in January, with a pain diary and ready for a fight, he gave me the option of an operation. I asked for it, even if, as he thinks, it doesn’t show endo at least I’ll know one way or the other.

 

Last night, listening to the stories of these other women who have gone to him and been diagnosed and treated so easily, I started crying. It dawned on me that he had never even examined me, felt my tummy or anything. Why was it always so much harder for me?

Is it because I look so young? Even when they know my age, they look at me and think I am still a kid and therefore I’m not in the same league as these married women wanting babies. I know fertility isn’t my primary concern at the minute, I need some relief from this pain which has taken over my life. Still, I would love to have children one day and the thought that I mightn’t be able to scares the living daylights out of me. But I told myself long ago that I would focus on one battle at a time and right now, my battle is with pain. One day, when I start a relationship and it looks like it might get serious, I’ll have to tell my boyfriend what exactly he’s getting into with me. Its an awful lot of baggage when you’re only 23.   

My consultant hasn’t done an internal examination because I’m a virgin and it will be painful. It didn’t matter so much when another doctor did one a few years ago. Nor did it matter a few weeks ago when I had a serious abscess in a not-very-nice place and had to be examined by countless doctors. Yet I still get treated differently because I’m not sexually active. Sometimes it feels like I’m being punished for never having sex.

I guess I’m just feeling a bit sorry for myself today. I just feel like I’m banging my head against a brick wall and no one will ever take me seriously or even listen to me until they think I’m a proper ‘grown-up’.

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The great flirting distraction

Published April 24, 2012 by crazyinpink

So, life is pretty serious at the minute. I have a lot of things to think about…

Firstly, I didn’t get funding to do my PhD. Sad times. I am on the reserve list and if money becomes available before September, there’s still a chance I can do it. But I have been offered the chance to do a different PhD on a set topic. I asked my supervisor (and kind of mentor) about it. He said I should apply and keep my options open until September, if by then I haven’t got the money to do my own, I can still get paid to do the other one. I’m still a bit conflicted about this. Its a big decision. Your PhD topic pretty much lays the foundation of your academic career. I wonder if I could do it on something that isn’t really my area of research. But I do need the money. I still don’t know.

 

Secondly, I was a member of a choir until January when I decided to take the term off because of my health and uni etc. Now I need to decide whether or not I want to return. My feelings for the choir are decidedly mixed…but that’s a whole other story.

 

Thirdly, Best Friend is still acting inexplicably oddly. I saw him a few days ago for a quick chat. He did a lot of odd stretches and things, practically shoving his crotch into the air every few minutes. Has he always done things like this and I just never noticed before? Or is this a new thing he does? And why on earth does he keep acting so weirdly?

 

Anyway, in order to keep my mind off these issues I’ve recently engaged in a mild flirtationship with a guy at work. For ages, my work friend and self-appointed Fairy Godmother has had a crush on a guy in a different dept, which she visits at every available opportunity. He resembles the guy from the recent adverts for a certain large Swedish furniture company, so we nicknamed him Ikea.

Fairy Godmother decided I too needed an office crush to keep me amused and mentally paired me off with a lovely Christian guy who, for some unknown reason, we call Jam. Things were going well with Jam, over the last month or so we went from polite greetings to twitter banter to long talks after the end of the working day. I began to realise how funny he was and how much we had in common. Then didn’t he go to Australia for a month?

Typical.

Last week I was drafted to cover in another dept and had to work with a new guy, who Fairy Godmother and I nicknamed Face due to his resemblance to the gorgeous Bradley Cooper in A Team.

Face and I have also exchanged some twitter banter, mostly history-related but after spending the day with him the flirting has gone into overdrive! Everyday there’s a flirty comment. On passing his desk coming back from lunch yesterday, I noticed he was on the phone so stuck my tongue out at him. He winked. He visited my office today with some work and sat chatting for far too long.

So…up until a few days ago I had a pretty big crush on Jam. But now, with this thing with Face… Who knows?

All I know is, I appreciate the distraction. Especially one in such a pretty package. 🙂

Am I the new poster girl for endo?

Published April 16, 2012 by crazyinpink

In September time, my mum talked me into going to a support group for endometriosis. I’m so glad she did. Even though I’m still relatively new to the group and the youngest girl there by far, I finally have people who know what I’m going through and understand.  Because of the group, I no longer feel ashamed of having this ‘girly disease’, it’s no different from having something like diabetes, it’s not my fault that I suffer from it. I’ve taken a new ownership of my body, endo and all, and I’ve gained the confidence to fight for treatment and recognition.

I started telling people what it is that’s wrong with me. Everyone knows I’m not well, I haven’t been well for years but never before have I given them a name, something they can Google and see what exactly it is. I felt embarassed. But I’ve realised that I have nothing to feel embarassed about. It’s ridiculous that when I dislocated my kneecap a few years ago I got buckets of sympathy for 6 weeks while I hobbled about on crutches, yet I’ve been living with endo (an altogether more horrible thing than a bad knee) for three years and no one really cares.

March was Endometriosis Awareness Month. The leader of our group sent letters to local papers to try and raise awareness. One paper (one of the biggest Belfast papers) responded asking to do a feature using girls from the group. As I’m the youngest, I offered a perspective that was very different from everyone else so I agreed to do an interview. My interview was conducted over the phone and lasted about ten minutes. The journalist had already interviewed the other three women and I was the last. After sending her a photo (a very cheesy one of me at my graduation last summer) we all waited for the finished piece.

I bought a copy in the petrol station on my way to the library and sat in the carpark to read it. I was mortified. The headline for my part was ‘At 22, I had an artificial menopause’ right next to the cheesy photo of me. Yes, that was true, I did have an artificial menopause at 22, complete with night sweats, hot flushes and HRT but did it really need to be my headline??

And it got worse…The reporter had turned my ten minute interview into a first-person narrative as if written by me. If that was what she wanted, I would have written it myself! Instead, this cobbled together story didn’t even sound like me, it was awkward and the sentences didn’t even make sense at times. There were also little fabrications in it which I never said. Possible the weirdest was “I can’t wear jeans anymore because of the pain in my thighs’. WHAT?!  In answer to her question about how endo affects my everyday life, I mentioned that I usually wear loose dresses and skirts because I can’t stand tight fabrics pressing on my stomach, not once did I even say the word ‘thighs’. I should also point out that my part of the feature appeared right next to a checklist of symptoms of endo and right at the top ‘pain during intercourse’….yup, right next to my apparently painful thighs.

And if that wasn’t bad enough, my little story ended with a complete slating of my ex-boyfriend. The reporter checked that I was single (as everyone else was married) and then, talking about the horror of the menopause, I mentioned that it was difficult for people to understand, my 20 year old boyfriend didn’t have a clue what was going on. She pounced on this tidbit and asked if we had broken up due to my illness, I said ‘no, not really…’ She then asked if we had had a good relationship and if it was serious. I then asked if we could talk about something else. This was translated as, ‘I lost a boyfriend because of this disease. We had a pretty good relationship but it was hard for him to cope with. He was only 20 and this was all a bit too grown up for him.’ I am so glad my ex doesn’t read newspapers and I hope that no one has seen it and told him.

Anyway, casting that public humiliation aside, I’ve now been asked to talk to the Minister for Health about endometriosis and my experience of the NHS. I think its important that more people are made aware of the disease as well as the staggering average of 7 years from complaint to diagnosis. I’ve suffered for 10 years and still most doctors would rather believe I have IBS (Irritible Bowel Syndrome) or that the pain I experience is psychological rather than listen to me and take heed of the fact that endo was found on my ovary four years ago.

What does it really matter if I feel embarassed for a day or two? I really believe in raising awareness of endometriosis and as long as these opportunities keep coming, I’m going to take full advantage. Who knows? Someday I could be the poster girl for endo! What a scary thought.

Over-reaction or realism?

Published April 6, 2012 by crazyinpink

Yesterday I had a bit of news….sort of.

I’ve been waiting to hear about funding for my PhD and since I’ve got an essay due after the Easter holidays I thought I’d distract myself with some research. I emerged from the library yesterday afternoon to venture forth for some much-needed caffeine when my phone lit up with emails waiting to be read. Among the usual spam and random updates there were two emails from my supervisor. The first, a reply to an email I’d sent that morning about this essay. The second made me stop dead. The Head of the School had suggested to him to draw my attention to a studentship on offer. The studentship entails a fully funded 3 year PhD as part of a larger research project. I felt like the bottom had dropped out of my stomach.

As Best Friend pointed out, this email did not state “You have not received PhD funding” but to me, it may as well have. I know this studentship has only just become available but why would they recommend it to someone they have already decided to give funding to? My supervisor and I have a great relationship and he knows me better than some of my friends at times. He knows that I would never give up my topic to do another. I am a religious historian. This studentship is for a project on poverty and welfare. The only intersection between my research and this project is the period. Why would they suggest it to me unless they knew that I wasn’t going to get the money to do my own?

Best Friend met with me and immediately told me off for over-reacting. He said that I was blowing it all out of proportion and I probably am, but he just doesn’t see it the way I do. When he applied for his PhD he applied twice, once for his own topic and once for a pre-chosen one. He got into the pre-chosen one and was all set to do it until a week before starting when he suddenly got the money to do his own. Because of this, he thinks its just the same. But its not. He applied simultaneously, I applied a month ago and now they are suggesting I apply for another, after the decisions have been made.

I don’t know what to do now. Assuming that I haven’t got the funding for my PhD, I can either stick to my guns and do it anyway or apply for this other one. But what if I get it? Could I really spend three years researching something that I have absolutely no interest in? I found it hard enough to continue with my Masters when I had absolutely zero interest in what I was doing. I have a feeling that if things were to get hard, I wouldn’t even have the motivation to get out of bed to go work on something I would eventually grow to hate. And I would be stuck with a specialism I don’t even like. My post-doctoral prospects would be completely based on this topic, a topic that isn’t even mine.

Or I do my own, part-time and stay in my current job to support myself? I would be completely exhausted and probably wouldn’t have the time or energy to do much else besides work and study. But at least my research would be something I’m passionate about. And I could reapply for funding after the first year, or I’ll spend the next six years hovering between academia and employment.

I have absolutely no idea what I should do. At least I have the whole Easter holidays to brood on it.

Playing the waiting game

Published April 3, 2012 by crazyinpink

For the last few years it has become my dream to do a PhD in History. Yes, possibly the geekiest dream imaginable. But there it is.

The Masters course I am currently on is a stepping-stone to the PhD and what a slippery stone it has been. I love history, its the one thing that can distract me from all the crap going on in the world. All I need is a good history book and a cup of coffee and I can keep myself occupied for hours. But this Masters course has been a constant struggle. Shockingly so. The main reason why I dislike it so much is that we don’t get to do any real history. Now that we’re near the end of second semester the history is starting to peek out timidly from behind the overbearing ogres of modules like Historiography and the beast that is Research Methods. Personally, I think the awfulness of these first semester modules was to sort the men from the boys, like some bizarre geeky test of stamina. If you can survive the pain and tediousness of those modules, then we’ll let you actually study some history. As a separation method, it pains me to say, it works extremely well. My class now stands at half what it was in September, the majority of those left are US students who have no choice but to stick it out. Me? Well, I won a scholarship to pay for my tuition fees so as its being paid for me, I thought it best to grit my teeth and keep going.  Plus, the Masters for me was only the first stage of my gradual evolution to becoming a fully-fledged historian.

I wasn’t always this geeky. When I left school I wanted to be an English teacher. I had a plan to study English and History and then do my teaching qualification. Not even a woeful A Level English teacher could deter me from the plan. My first year of uni went pretty much as expected, I joined every society I had an interest in, I met new people and I continued with my reputation for being a good student. In school I had always been a straight A student, good at everything (except PE and Technology which, thank goodness, I dropped after third form) but not exceptionally brilliant. At the end of my first year at uni, I won a prize for my performance in history and suddenly I was the best at something. I loved my history courses, they were so interesting and stimulating that it didn’t seem like a lot of effort to read ridiculous amounts of material for each class. But even this newly-discovered passion didn’t change my plan. I continued on with English, even though every class was crushing my soul a little bit more each week, every reading was like torture. At the end of second year, realising a little too late, I knew I couldn’t continue studying English anymore.

Changing my degree was probably one of the best decisions I’ve made. It meant studying for an extra semester and accumulating even more of a student debt but I just knew I belonged in history. I understood things the other students didn’t even care about, I found myself becoming friends with lecturers rather than with my peers and even daring to dream about what I might one day contribute to the field.

And now, I sit nervously refreshing my emails, waiting to hear if I’ve been given funding for my PhD. I applied a few weeks ago and was accepted soon after so I know that there is a place with my name on it come September but getting funding would be perfect. It would mean that I wouldn’t have to work to support myself, I’d actually be getting paid to do something I love! All I know is that the decision was made on Friday and applicants are being told this week if they’re successful or not. My stomach is squirming with nerves. Yet all I can do is wait.

The best friend problem

Published April 2, 2012 by crazyinpink

My best friend is a boy. I do have a girl best friend as well but, usually, when asked about my best friend it’s the boy who springs to mind.

He and I have been friends for years. We met as undergrads, working on a project together in our second year of uni. There was something about him that I easily connected with. He made me laugh (at him, usually) and I could completely be myself around him. In the beginning, as is common in such circumstances, my friends were convinced he had ulterior motives. I vehemently disagreed. Best friend was so innocently unaware of things like relationships and crushes. He was so very awkward and unsure of social situations. His mind would be so full of historical things that there seemed to be no room for everyday social conventions. He was like the history version of Dr Sheldon Cooper.

As time went on, I started going out with someone yet Best Friend remained close by. When the relationship ended, he was still there.  It was only then, a year after we first met, that I wondered why he was friends with me. Honestly, I wondered whether he did have a crush on me but just didn’t know what to do about it. Nothing happened and we continued our dorky friendship, in final year you rarely saw one of us without the other, we were ‘Mr and Mrs History’.

I started seeing someone new (which is a saga in itself) and Best Friend also had a romance of his own with an older woman. When I ended that relationship, I was utterly heart-broken and confided in Best Friend. He always listened to my insane ramblings and tried his best to understand.

Our friendship works for us because even though we have the same interests (namely a love of history) we have different personalities and lead different lives. We fit together so easily that we don’t need to see each other constantly for reassurance, we always know the other one is there when we need them.

A few weeks ago, everything changed. We went away to a conference and shared a room in a B&B. We have shared a room before and everything was fine but this year was different. If we were in the room, he was just in his boxers. He was more touchy-feely than ever before and, even though he is protective of me, was so over-protective I felt like yelling at him to leave me alone. On the Saturday morning he was having a certain ‘situation’ in said boxers and so, to spare both our blushes, I pretended to be asleep as he got ready to take a shower only for him to come over to my bed and shake me to make sure I was awake. On the Sunday morning as we packed, he hugged me and then just looked at me. It was the most terrifying few seconds as I had no idea what was going to happen next. I awkwardly hugged him and gave him a friendly punch on the arm to cover my bewilderment. The whole weekend was filled with odd little moments and for the first time I realised how very unusual our friendship is. None of my friends have a guy like this, a straight guy who protects like a brother, puts up with my little quirks like a boyfriend would and to whom I can talk to about anything, even things like relationships and sex.

I don’t quite know how to deal with him now. It feels like the dynamic has changed. Faced with the oddness of our situation and the tension of that weekend, I have retreated and chosen a very unhealthy course of action. Subtly avoiding him didn’t work so now I’ve decided on sarcasm and an aloof detachment to carry on with until I have come to terms with this weird new atmosphere.