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All posts for the month June, 2012

Body versus mind

Published June 29, 2012 by crazyinpink

I’m used to my body not doing what I want it to and stopping me from living life the way I’d like but last weekend took the battle to another level.

My big project was due on Monday (already a week late thanks to a medical extension) and on Wednesday I started getting unusual pains across my pelvis.  It wasn’t my usual kind of pain, it wasn’t as deep for one thing and was right across my tummy instead of the usual endo pain concentrated on my left.  My appetite (already shaky) all but disappeared and I was exhausted just walking up the stairs.  I wasn’t very worried until I started clotting.  I haven’t had a period in four and a half years so clots really scared me. I kept going with the project. The bulk of it was done but I had to finish the introductory essay and tidy it all up. On Sunday I woke with a monster migraine and started throwing up.  I had so much to do but knew I needed to rest. I sat at my computer for hour-long bursts before lying down for an hour or so with an ice pack on my head and a hot water bottle on my tummy. I don’t know how I did it but I finished the 5,000 word essay and tidied up the main 10,000 word calendar, even adding a bibliography and creating a cover page, contents and abbreviations.  I didn’t eat at all and every sip of water seemed to come straight back up again.

On Monday I still felt like crap so I called in sick to work. A day in bed was not an option though.  I got my mum to print off two copies of my project, I took them to get bound then I drove to uni to hand them in.  I looked as bad as I felt, wearing a man’s Tshirt, loose combats (two sizes too big) and a hat that once belonged to an ex-boyfriend.

But I handed it in.

Never before have I been prouder of overcoming my body.  I know that essay wasn’t up to my usual standard but I was happy with the main body and I know that I did the best I could under the circumstances. If I get a high mark it will be my proudest achievement. I felt like I was dying on Sunday, every part of me ached and longed for rest but my mind kept pushing forward little by little to get things done.

It doesn’t seem like much but when you have daily struggles with your body, a win like this feels great.  I could have given in and slept, begged for another extension and been a nuisance but I was so close to the finishing line, I had to sprint those last few feet.  That’s the only way I know how.

I could have given in when I got really ill. I didn’t have to go on to do a Masters. I don’t have to do a PhD. Why bother with all that stress and pressure? The deadlines and appraisals, the blood, sweat and tears. But not going after my dream (albeit an exceedingly dorky one) would be giving in to my condition and letting it win. I am a woman with endo and all the other delightful medical problems it brings but that is not all I am. I have hopes and dreams beyond just getting better. I want to have those initials after my name, I want to meet someone special, I want to own my own home, I want to look after my mum and, above all, I want to be happy with my life.

This week I won the battle with my body (an ongoing battle as I try to fight off a horrendous kidney infection) and its only fired me up to keep going with the war. 

Published June 20, 2012 by crazyinpink

This made me smile, laugh and nod emphatically in agreement. Love. It.

Geri Schear

  1. Never take the first taxi that comes.
  2. Or the second.
  3. You’re not really in shock unless you have a blanket.
  4. You can always get a mobile phone signal even in the middle of Dartmoor.
  5. You can be forgiven almost anything if you have killer cheekbones.
  6. Stupid comments can lower the IQ of the whole street.
  7. Even soft-as-kittens’ doctors can have bad days.
  8. Just because you’re forced to meet a strange man in a dark, mysterious location doesn’t necessarily mean he’s evil.
  9. Of course, it also doesn’t mean he’s not.
  10. Don’t take coffee from a man who never makes it. No matter how repentant he looks.
  11. All the cool super-villains are called Jim.
  12. The A to Z of London has all sorts of uses.
  13. Never let anyone take a picture of you wearing a funny hat.
  14. You’re overdressed if you wear more than a sheet to Buckingham Palace.
  15. Once you move in…

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An unusually deep conversation

Published June 20, 2012 by crazyinpink

As seems to be the way of it lately, I had a lot of boy news for my workmate (and Fairy Godmother) after the weekend.

I had gone to the barn dance at church on Saturday night. My first dance partner was a five year old boy, then a man in his 40s and his girlfriend dragged me up for a trio dance. Although a group of us were there, the rest mysteriously disappeared when the dancing started, leaving me and Dan, an extremely quiet guy around my  age.  There were high hopes for me and Dan to get together when the young adults group started about two years ago, but I was just starting my romance with Mickey at the time.  Anyway, after both of us being pulled up by random people, we decided to be dance partners.

The first time we went to awkwardly hold hands, there was a tiny electric shock. We pulled back and I laughed nervously, suddenly struck by how brown his eyes were. We learned the dance and as we waited for the next instructions we kept holding hands, even though no other couples seemed to be. The two of us swung around, held hands, promenaded and all the rest for the next few songs before taking a break, walking back to our seats still (yup, you guessed it) holding hands. Dan is a nice guy, the quietest guy I’ve ever known.  I used to think he just didn’t like me as he never really spoke to me then I caught him smiling to himself at all the stupid things I say and realised that he had a wee twinkle in his eye and seemed to be the only one with my sense of humour.

We spent the rest of the evening either sitting talking or dancing together. When the others eventually returned they were all winking and grinning at us. I’m not entirely sure of what was happening.

But wait. I like Jam, don’t I?

This was essentially what prompted the discussion with my Fairy Godmother. I know that I like Jam (butterflies don’t lie) but then there are all these other guys that keep coming in and out of focus. On Monday evening we continued talking about all the men and how I felt.

In an uncharacteristic move, I found myself saying that I think I’m ready for a serious relationship. I’ve always been a bit Chandler-esque about committment in the past, loving the chase but not the couply phase.  Now I think I’d quite like to see what a long-term relationship would be like. It’s just finding someone to have that with.

I worry sometimes about finding someone who can handle me.  I’ve never been ‘normal’ and I don’t know how to be the perfect girlfriend.  I don’t necessarily need a boyfriend, there are too many girls like that, I’m happy enough being single. I know who I am and I know what I want from life, if I get married then great but it’s not the only goal I want to achieve.  I would love to have kids but I know that with two diseases festering in my woman parts, that might be difficult if not impossible.  How do you go into a relationship with that knowledge? Holding a bomb and deciding when to detonate it. Too soon and you could scare the guy off.  Too late and you might be too invested in the relationship.  Even besides the whole baby business, my condition, my treatments, my lifestyle.  It’s taken me three years to come to terms with it.  I found out that some friends just couldn’t. I’ve yet to find a guy who could.  Someone who would understand and take care of me when I need taken care of.

I spilled my guts to my Fairy G and she said she hopes I get that relationship and how great would it be if I found it with Jam. Then she said that if I find it with Butter (Jam’s friend and housemate upon whom she has a bit of a crush) then I have her blessing. I found this strange but she said she had a feeling that something might develop there.  As if I wasn’t already confused enough.

It’s alive! It’s alive! My thoughts on a strange, Frankenstein-filled week

Published June 16, 2012 by crazyinpink

This week has been quite strange.  I was able to do quite a lot. Yay!

On Monday, I spontaneously went pirate golfing and for dinner with a group of people I don’t know just ’cause my crush invited me.

On Tuesday, I went out after work for dinner with some co-workers, again just ’cause someone randomly invited me.

On Wednesday, I tutored in the afternoon and in the evening I headed over to church for a music rehearsal (I’m leading the worship in church tomorrow).

On Thursday, I finished reading all the source for the project I’m working on. I popped into the office to use the microwave and visit my Fairy Godmother.  Then after another hour or two in the library I went out for dinner with the girls from my endo support group. I was the first to leave and was given a yellow rose (well, I was given two, one for me and one for my mum). I walked up to the train station in the rain with my giant uni bag carrying two roses. I must’ve looked so strange.

I met my friend at the train station and we went round to see the National Theatre Live screening of Frankenstein.  When it was screened last year I was in hospital so I was not going to miss these encore screenings! The two lead roles of Dr Frankenstein and The Creature were played by Jonny Lee Miller and Benedict Cumberbatch. Each night they switched roles.  Both versions are being shown, and I wouldn’t be a true Cumberbitch unless I went to see both!  So Thursday night was Miller as the Creature and Cumberbatch was the Dr. The first fifteen minutes or so were a bit odd as the Creature came to life and learnt to walk and move.  It reminded me of those awful GCSE Drama classes when the teacher obviously couldn’t be bothered and used to make us pretend we’d just been born and were experiencing everything for the first time.

Anyway, it picked up and soon, I was hooked.  Watching a recording of a play is a strange experience but it was such a beautiful production.  The lighting was utterly astounding (I never thought there would be a day when I would be commenting on lighting of all things but it was pretty amazing).  The two actors were unbelievably good.  JLM’s Creature was so vulnerable it was nearly heart-breaking. Cumberbatch’s Victor was detached and cool without being cruel.  It was easy to see certain Sherlock-esque characteristics in his delivery of deduction-style lines but he was very convincing as the tortured genius.   The supporting cast were…interesting. Naomie Harris as Victor’s fiance was brilliant. I am a big fan of hers anyway but she was quietly dignified and gentle. Confusingly, Victor’s family were all black when Cumberbatch is as pale as I am (and I am so pale I can’t find foundation that matches my skin tone – they don’t have a shade called ‘Vampire’).  His little brother was brilliant but the father was a strange portrayal.  There were other stand-out supporting roles; the blind man was easily my favourite character and the Scottish assistants Victor hired to grave-rob provided much-needed comic relief.  My friend and I left feeling that we had spent a very intellectual evening in the company of this play as it questions the origins of good and evil.

Friday I spent in the company of my missionary letters, chipping away at my project due next week before heading out to a graduation party last night.  My friend (the same one from Frankenstein) is graduating next week so had a little party, mostly her family and a few friends.  I ended up watching the football discussing Belfast industries from the 19th century with her Welsh great-uncle.

Today I’m working away on my project and tonight going to a party in church.  A guy from church is 40 this week, he has Downs and is the nicest guy ever. We’re having a surprise for him and sending him to Liverpool to see his favourite team play next season. Tonight we’re having a bit of a feed and a dance, it should be good fun.

Then tomorrow I’m leading the worship as the young adults take our morning service. I’m also doing a solo during the service.  My grandparents are coming up for lunch for Fathers Day and then tomorrow night I’m back at the cinema to watch the other version of Frankenstein with a Cumberbatch Creature. Can’t wait!! (and not just because he comes to life wearing only a dainty loincloth) 😉

Honesty or Too Much Information? Or ‘Five ways to reveal your illness’

Published June 13, 2012 by crazyinpink

When you have an invisible illness like endo there’s always going to come a time when you have to reveal yourself as ill.

But how do you do that without painting yourself as a whining loser?

‘Hi, I have endometriosis, a gynae disease that will probably make you uncomfortable when I talk about it and that you won’t even understand. You’ll never be able to see what’s wrong with me, you’ll just have to take my word for it. Ow. I’m sore. And, yeah, see? You’ll never understand.’

I’ve personally used a variety of different ways to get my point across and I think there are 5 different ways to express my illness.

1 – The Medical Way

Use this when you need people to get that you are actually ill and you have a recognised condition.  Describe it using medical jargon and detail your symptoms.  This comes in handy when registering for disability support at uni or explaining why you can’t do a particular event or activity.  Generally, the Medical Way goes like this:

‘I have a condition called endometriosis.  I was diagnosed five years ago and I’m currently on heavy pain medication and receive regular drug infusions. I suffer from chronic pain in my pelvis and back along with exhaustion, bowel problems, kidney problems and I have a very low immune system.’

2 – The As-Much-As-You-Need-To-Know Way

Involves revealing parts of your problem, usually to people you don’t know very well who don’t need to know what is wrong with you. Asking for a chair with better back support because you have ‘back problems’, shrugging off strange looks when you pop pills in public, saying your tummy hurts when co-workers see you filling a hot water bottle in the kitchen at work.

3 – The ‘You Know The Way I’m Always Sick?’ Way

Use with friends who know you have health problems, know how many times you go to the hospital or the doctor, know there’s something wrong but have never pushed too hard to find out exactly what it is.  This is a tricky conversation, particularly with a male friend. One day the time comes when you just have to tell them.  You use non-medical language and try to avoid specifics. For example:

‘You know the way I’m always sick? Well, it’s ’cause I have this thing called endometriosis.  It’s not life-threatening or anything but it’s debilitating and there isn’t a cure.  It means I can’t do certain things and it can lead to other things I’ll have to deal with later but I wanted you to know what it is that’s wrong with me.’

4 – The ‘This Is What My Life Is Really Like’ Way

This one is reserved only for best friends, close female family members and fellow sufferers.  This is the warts and all account of every horrendous treatment you’ve been through, every doctor who told you it was all in your head and everything your body can and can’t do.   This way can occasionally lead to tears. I don’t use this way a lot but it is necessary to release the pressure that living with endo brings. Having a rant about how crappy life is can help but only if it is received by sympathetic ears.

5 – The Vague Way

I used this way last night at a work dinner.  The ‘young ones’ from the office (ie those in their 20s) went out for pizza (mine as cheese-free, thanks endo) and a relatively new guy asked what was wrong with me after a few of us, me included, were joking about me being the unhealthiest person they knew. This guy is great, in fact I chatted to him a lot the night before at the golfing party and my work mate has a bit of a crush on him, but I couldn’t tell him the name of what it is. It’s not that I’m ashamed. There’s nothing to be ashamed of. It’s just that I didn’t want to make him uncomfortable by telling him the full facts nor do I know him well enough to feel like he could handle it.  I shrugged it off and said that I have a condition that interferes with everything and that’s why I sometimes have a hot water bottle at my desk or why I have such extreme moods. Then I told a funny story about a hospital visit.   

Sometimes its hard to know which approach to use but there is no way that I could hide my illness. It’s part of who I am now and if I can’t accept that, then how can I expect other people to?

The Crush – Part Two

Published June 12, 2012 by crazyinpink

Last night was great. I went to the birthday crazy golfing and got to hang out with Jam and meet his friends.

I only knew Jam and a guy from work (nicknamed Butter, my workmate and I have little else to do at times) so with every person that arrived Jam introduced me. His introductions were like Bridget Jones’s putting in wee things about me and how we knew each other. Everyone was really nice. There were too many of us to place together so we split into two teams. Even though I wasn’t in Jam’s team, he kept hanging back every now and then to check on me and make sure I felt included. Butter was in my team so I knew someone anyway. We were actually quite competitive and had a good laugh around the course. Butter asked if I was coming for food with them and when we had all finished Jam invited me to come with them.
We ended up in a Chinese restaurant at a long table. The girl sitting opposite me hadn’t been in my team but soon got chatting and asking me all sorts of questions. Jam had obviously told her about me as she knew I was going to do a PhD. Jam was beside her and I often found her sitting looking at me when I was sitting look at Jam. She told him off for saying something he ‘shouldn’t say around girls he likes’ at which he blushed and changed the subject. We talked about Toy Story and I had got him a dopey Toy Story birthday card which at this point was still in my bag.
He got me to tell his friends how he was in work and asked if he was different outside of work. He was, but not that much. He was obviously more relaxed with his friends, quipping and telling stories, showing a lot more of his sense of humour that I see glimpses of in the office. He made it clear in my various introductions that we don’t directly work together, more we just see each other in the office. He told his friends about our little chats when I arrive and leave each day and I chipped in by saying that most of the day I’m in an office with people I don’t really care to talk to so I look forward to chatting with Jam.

I had a lot of fun and got on so well with his friends. They were all really nice and welcoming, it must have seemed a bit random that I just turned up when I clearly wasn’t really part of the group. But Jam did make an effort to make sure I felt like I was all night. I gave him his card as we left and he said he really appreciated it.
Even if this doesn’t grow into a relationship (although that’s what I’m hoping will eventually happen) I feel like I’ve made a really good friend.

The Crush

Published June 11, 2012 by crazyinpink

So, it may have escaped your notice but I have a massive crush on a guy I know, Jam.

Today is his birthday. I left a ‘Happy Birthday!’ comment on his facebook before coming into work. Now, Jam and I have slowly cultivated our friendship during end-of-the-day conversations as we leave the office. The last few weeks we haven’t had very many due to different circumstances cropping up.  Today, I have a hospital appointment so I’m leaving work early. I was marginally disappointed about this as today would have been the perfect opportunity for a really good convo.

BUT!

This morning as I signed in (beside his desk, where I sign out and he normally turns around for our chat) he turned round and went to say something. Then didn’t a woman from another department come over to talk to me about something. When I escaped the conversation, he was sitting waiting to talk to me. We had a really good chat for about 10 minutes, talking about our weekends and me wishing him happy birthday of course. I asked if he was doing anything fun and he said, not really, he never does. 😦

Near the end of our convo I said he really should do something for it and he said that he thinks he might go to crazy golf. To my knowledge there only is one decent crazy golf place in the greater Belfast area so I asked if it was there he was going.  He said yes but he’d only decided this morning so he didn’t know how many people would turn up. I said, well you’ll have fun anyway, I love that place and went to leave. He stopped me and invited me to come if I was free tonight! He told me the time but said it might be a bit random because he wasn’t very organised. I said I’d see what was happening later and I might facebook him about it.

 

After texting my Fairy Godmother and being informed that I’m pretty much home alone again tonight, I’ve decided that I’m going to go. I think…

I’m worried that it might be a bit random if I turn up, though I know that a guy from the office he went to school with is going so I’ll know someone else. And maybe he was just being polite inviting me but not expecting me to come.

On the other hand, its a great opportunity to hang out with him outside work and meet his friends. Maybe it could lead to a better friendship. I’m so confused!

I’m about 80% sure I’m going…

…to be continued.

All the Single Ladies!

Published June 6, 2012 by crazyinpink

As I drove through town last week (after missing the bus from where I live to the centre of town) a big hairy figure crossed the road in front of me.  He had wild, curly hair way past his shoulders, a big crazy beard reminiscent of Robin Williams in Jumanji and a woolly hat pulled down to just above his eyes.  What with all the hair and headgear obstructing my view, and the fact that he has gained a few stone, it took me far too long to journey from curiosity to recognition to disgust. It was my ex.

I got on the bus to the city for the first of my concerts and sat pondering.  I have been single for just over a year.  In that year I’ve graduated from university, started a Masters, won awards, been on tv and become an accidental political activist. Seems quite impressive when you see it all written down. I thought about how different it would be if I had stayed with my ex. *cue dream-like music*

Let me take you back to 2010 when I was hopelessly devoted to a boy from uni who seemed completely clueless about my feelings.  He was shy and had never had a girlfriend. I pined after him for months.  We went out on a date-type thing then he didn’t see me for weeks. I went to London via Bristol with a guy I’d met the year before.  Bristol Boy came over in Summer ’09 to visit my friend Al, he was one of her friends from uni.  Al was convinced he fancied her so begged me to be constant chaperone for the duration of his stay. At the end of his visit, it turned out he didn’t fancy her, he actually liked me and we spent his last half hour in Norn Iron kissing in her living room. Anyway, Bristol Boy and I went on a little adventure to London but nothing happened between us. When I came home, I realised that I needed to get over my crush.

That week I started helping out with an outreach team made up of the different churches in my town. Two guys around my age became my shadows, following me about relentlessly.  My church friends decided one of them must fancy me… On the last night, both asked for my number.  Only one of them started using it, texting me all the time. I went away on a family holiday and came back to this guy (let’s call him Mickey) wanting to meet up. We randomly went to McDonalds (romantic, I know) and met up for coffee.  He then tagged along with Al and I one night, ending up back at my house. Al was staying over so I drove him home and he kissed me. Less than I week later he asked if we ‘could make it serious’ and if he could call me his girlfriend.

From the start we had very little in common. We were both Christians and lived in the same town but that was where the similarities ended.  He had left high school at 15, trained as a gardener/tree surgeon, volunteered at the National Trust but was essentially unemployed and in his spare time liked to ride his bike with his friend. I was finishing my degree, researching and writing a dissertation.  But I guess our differences was what was exciting about it.  Any other guy I’d dated had always been older, and usually slightly condescending.  Mickey didn’t care how clever I was, he was a year younger than me and so excited to be with me.  I’m not the most romantic person in the world but Mickey was.  He was forever holding my hand or wanting to be close to me.  It freaked me out a bit but I went with it, thinking that it would only last a month or two, like all my other relationships.

I didn’t reckon on the L word. I felt closer to Mickey than anyone else and he always made his feelings clear.  It was still a shock when he said he loved me. He knew I would need time to process so blurted it out just before a goodnight kiss. It took me weeks to work out how I felt and if I was there yet. Then one night, snuggled up watching a movie I realised how happy he made me and a few days later I was able to say it back.

It wasn’t the perfect fairytale romance though.  After three months or so, cracks began to appear.  He became distant and little things like calling me twenty times a day, began to annoy me more than ever. I didn’t want to give up on us but I couldn’t go on the way we were. We had A Serious Conversation during which I broke down and started crying. I had just found out I had polycystic ovary syndrome and had 13 cysts on one ovary. The doctor had told me it would be difficult for me to conceive and recommended I get pregnant as soon as possible. The crying scared Mickey. I was never emotional and was always the one in control. He upped his game.

A few weeks later, we stumbled again. Our relationship wasn’t exactly ‘chaste’ but there had always been a line that we didn’t cross (a line I had to draw repeatedly). After a very close encounter I had to initiate a Sex Talk. Although we were both Christians, I discovered we had different ideas about the physical side of our relationship. Neither of us had ever gone further than kissing before and while we had enjoyed experimenting together, I just couldn’t have gone the whole way with him.  All I could think was what a hypocrite I would be if I slept with my boyfriend yet continued teaching Girls Brigade. He understood and was willing to wait but made it clear that he was very ready to do it as soon as I was.

Part of me wishes we had broken up because of something like that. An obvious difference of opinion rather than the rapid deterioration and awkwardness that caused our break-up. Around this time I had been put on a new treatment for endo, injections to put my body into a state of artificial menopause. I didn’t know how it would work and, since he knew about me being sick, I warned him that things might get tough.  He seemed to be brilliant with it and took it all in his stride. Then, in the depths of menopause hell, we went to a formal.  He ignored me all night and sat playing on his phone.

We didn’t speak for a week then eventually met up to break up.  It was the hardest thing I’ve ever had to do. He barely spoke. I cried. Damn hormones.

It was the right decision. He was just a boy and even though he did try to understand what was wrong with me, he just couldn’t cope with it.  I missed him for so long but I know now that I’m ready to move on and leave him behind me…

Back on stage

Published June 5, 2012 by crazyinpink

Three nights onstage and three days later I’m almost fully recovered.

Last week saw my return to concerts for the first time this year.  My choir (the Christian one I’m still proud to be a member of) was supporting the Christian songwriters Keith and Kristyn Getty with their special guest Stuart Townend.  Nearly every church in the Western world has heard of these songwriters, their hymn ‘In Christ Alone’ is probably their most famous.  Personally, my favourite song is ‘There is a Higher Throne’ which remains my go-to solo piece when I’m asked to sing somewhere new.  The second verse goes like this:

‘And there we’ll find our home, our life before the throne

We’ll honour Him in perfect song where we belong

He’ll wipe each tear-stained eye as thirst and hunger die

The Lamb becomes the Shepherd King, we’ll reign with Him’

Things haven’t always been easy for me.  I’d like to think that I’m a positive person, or at least I’m trying to be.  But there are times when everything gets a bit too much.  My dad had an affair when I was a teenager and my mum fell apart.  He left and blamed me and hasn’t spoken to me since.  I had to get a job to help support my mum and I continue to work to help pay the bills and everything.  I’ve had to live with the most awful condition that I wouldn’t wish on anybody.  It affects every part of my life and every step towards diagnosis and treatment has been a struggle and still is.  There are times when I feel sorry for myself.  I wonder how I’m ever going to have a ‘normal’ life, if my friends are going to still be there for me, if I’ll ever find a guy who can handle all of it and how or if I’ll ever have children.

The words of this song are such a comfort to me when I’m having a rough time. ‘He’ll wipe each tear-stained eye’ even when I read those words I feel comforted.  My faith in God may not be perfect but it is my constant source of strength.  It isn’t particularly cool to admit to believing in God but I’m not ashamed.  I wouldn’t be the person I am today without my faith.

 

The concerts were amazing.  Three nights to a sold out concert hall.  Three days of soundchecks and rehearsals, back stage banter and dressing up.  I did all three nights but my friend only managed the middle one.  She got such a bad case of the giggles that I had to actually take her out of the prayer meeting before the show started.  I had heat patches stuck to my back and was knocking back the Tramadol during the intervals but it was such a great experience.  Hearing the thousands of people, on stage and in the audience, singing together.  Making friends with the cool band guys from Nashville, dancing to the impromptu jamming sessions after the show, meeting the people who wrote the words that have helped me through so much.  ‘Twas a pretty great weekend.