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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.