invisible illness

All posts tagged invisible illness

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

 

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A hug of compassion

Published August 26, 2012 by crazyinpink

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

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

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

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

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

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

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

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

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

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

A little bit of twitter-inspired philosophical wonderings…

Published August 21, 2012 by crazyinpink

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

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

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

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

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

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

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

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

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

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

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

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

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