Friday, 27 March 2015

Day ii53, Leg Vs Tum

Endo 365

I have been meaning to write this blog for a while however I have been having trouble formulating exactly how I feel. I want this notion to be clear and articulate. No pressure lexi...

I am finally off crutches and although I still cannot physically exceed walking (if a man was running as me with a knife I would honestly be screwed, I couldn't run even if I wanted to- which feels weird). Walking is giving me less pain each day and the swelling is slowly starting to subside. And it is such a novel, lovely feeling to be able to see the change and development- that there is positive development at all. A very definite beginning and a clear finish line.

Incase you didn't know, I had a very nasty rugby accident on the 3rd of December, my ankle was dislocated with a shattered socket, ball and total and patrial breaks up my leg. I am finally off crutches and getting back to normality.

By compairing my accident with my endo has made me realise a few things. It has, in some ways, been a blessing breaking my leg. It has enabled me to understand, seperate and define what makes endo so difficult. And you know what, this defining apifany was very empowering, and I would like to share it with you.

The first one is not revolutionary. Endometriosis is difficult because it is a totally invisable disease. This is both a blessing and a curse. Its a blessing when we do not want a fuss making, want to fit in and be 'normal' (whatever that is, last night I made fun with a 70 year old drag queen who had just had a hip operation). But that makes it hard for people, including doctors, to treat sympoms as seriously as they need to be, and understand how deblilitating it is. People are always so suprised and shocked if I explain about my condition, because they aren't there when it is bad and if its mild I am a super ninja at glossing over it. Cool as a Pesky Courgette. It makes things difficult and fustraiting because you can't see how debilitating it is, which brings (wrongly) guilt. Because- have we tricked ourselves about how bad it feels? Could I manage work? Can I just grin and bear it? No. just because others can't see it doesn't meant that you should then ignore it. Be kind to yourself, you wouldn't go on a run with a broken foot, listen to your body without guilt, it is not indulgence, this is our reality. And that is OK. As long as your family, employers and doctors know the truth then let it be as visable or invisable as you wish. I make it 'visable' by giving it a real presence in my life and a large part of my identity. But there are situations when I do just want to be normal.

It is endless. It does not, like my clever little leg, self help. Infact it does the oposite. It self distructs. And that is hard. Psycologically, I feel so so good and weridly proud of myself for the way my body has fixed itself (with the help of various surgons and metal pins).

And the progress is cathartic.

There is a begining, middle and an end. Like keeping the finish line in mind whilst you run the race. And that makes it so much easier to accept, there is something to work towards and in terms of life span, it is only a spec of time, something to work towards. It is heartbreaking when your body doesn't run as it should, when it malfunctios and betrays you. I remember when I was younger even crying to my mum that my body was putting me in the pain, and I couldn't stop it. It is a very strange and hurtful notion. Furtermore, the future is onomouse. I don't know how many operations I will have, I don't know whether or how I will be able to concive children, I don't know whether I will have a hyisterectomy at 35 or whether I wont have to have one at all, I dont know whether there are days where I will not have pain or whether the pain is only going to get worse. The unknown is agony. We can't have a finish line in sight to keep us going because we have no idea where it is. And on top of we can't se it. We're knocked out during the operation and we can't see through to the soft tissue in our stomachs. Again, it is invisable.

And finally, I can talk freely, openly and without fear of an awkward reception about braking bones. The taboo's surrounding endo is yet another form of fustraition, enforced shame.

 "Oh yoou have a hospital apointment today? What for?"
"Oh just an x-ray and check up" then they tell you a story about their cousin's dogs baby sitter who broke their arm playing frisby golf and knows someone who...

Is very different to:

"Oh yoou have a hospital apointment today? What for?"
 "Oh just a hysteroscopy"

Scilence. Que tumble weed.

I am aware that I have essentially highlighted sad stuff. But actually by dismanteling what is so unfair and upsetting about endometriosis, I now understand how I feel, and why. And I understand why it can feel so hard. And that when I am upset, it is justified and it isn't just a little pitty party i've thrown for one. It makes sense that sometimes I am just done, or angry about the peace it takes from my life.

But I do feel kinda liberated.  Because I am not crazy, its like the relife of finally being dyagnosed. My accident taught me that I do not have a low pain threshold, but actually a very, very high one. And that is kind of symbolic for the rest.

Sometimes we just need to take a step back, truly assess the situation and realise that we are frickin' Rock Stars. And that is OK too.

For everyone going to the 'World Wide Endo March' In London or around the world, have an amazing day, I will be thinking of you whilst I am on my 30 coach jounry to spain.... yeck. So, so sad that I cannot make it but do us all proud, raise some awareness and make a stance!

All my love,

Al XXX

1 comment:

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