Pain Sucks

Hello, Anna here.  When I was in hospital a few weeks ago, I was lucky  enough to be placed in a ward with some remarkable women.  Perhaps the most remarkable was Olivia, a girl my age in the bed opposite mine.  Olivia told me her story, and how she came to be where she was today.  It was the most  humbling story I had ever heard and the most striking thing about it was Olivia; who told it without a hint of self-pity or recognition of the enormity of all she had been through.
But before we give you that story, (and we will, because it deserves to be told), Olivia has written some background for us about her condition, and what makes her the extraordinary person she is. This is a little different from other Any Other Wedding content, but it is no less significant for it; we want to hear about your challenges and the way you choose to live your lives; and Olivia gives us exactly that, in her straight talking, no-nonsense style.  
I give you Olivia:  

I’m 5 foot 11inches (and possibly shrinking) with a slender build, decent boobage and long legs. To the untrained eye I am a healthy looking lass and a possible hottie. Strip away the external image and you are left with aching joints, poor circulation, yellow eyes and the potential to go from being fine to collapsed on the floor  in agony within minutes.


What could cause this you ask? Well in three words its Sickle Cell Anaemia. It’s an inherited disease that causes abnormal sickle shaped red blood cells. These abnormal blood cells carry less oxygen, are sticky and have the potential to get stuck in any part of the body causing reduced blood and oxygen flow and intense pain to the sufferer.

The problem with this illness is that it can cause no end of pain and damage to the body and there is potentially nothing that can be done about it. You don’t know pain until you have to live with it. There are so many types and levels of intensity of pain that cannot be described or understood, even when you have lived with it all your life and have all the words in the world with which to do so.

The sad thing is that people will look at you as being healthy and ask – what is your excuse?  Why don’t you give up your seat for an elderly person?  Why are you always off sick? The answer is simply this, my body is its own and I can’t control it. I can’t control temporarily losing my sight, or having chest pains that come out of nowhere, or aching knees that leave me hospitalised for two weeks and needing crutches (which ironically, I can’t use because they cause tendonitis in my arms, as my upper body doesn’t have the strength to support my weight).

I reply that my body is falling apart, because it’s true. People tell me not to be silly. Well who is being silly when you’re off for up to 3 out of 6 months of the year? Who is joking when the effort of simply getting out of bed is torture? And who is joking as you cry when you realise that you have to seat in the shower as you can’t even stand to shower yourself?
Despite this I consider myself to be lucky as I haven’t had a stroke, or heart/kidney/liver failure, any blood clots or hip replacements or major surgeries. However it’s hard to feel lucky when you feel like your back is breaking and someone is crushing your spine and boxing your insides to bits. It’s hard to feel lucky when you’re being pumped with drugs to ease the pains but end up messing up your mind and body. It’s hard to feel grateful when you’re in the hospital for the umpteenth time and people no longer send cards and are tired of visiting. It’s hard to be patient when the pain won’t shift no matter what you do.
And how do you keep yourself going you ask? The answer is I don’t know. I count my blessings that I have a job I love (for now, anyway) with employers who try to understand, friends who try to be there for me when they can, that my brother and sister are pretty much healthy and that I finally live in a more suitable flat that caters for my needs. I make the most of spending time with friends and family when good and indulge in little treats here and there.


However that doesn’t stop there being down days where you feel depressed and all you can do is cry or your fighting to keep the pains at bay whilst acting like everything is ok. In fact you can become so good at acting like everything is ok, that sometimes it makes it harder for people to believe you are ill.

For more information about Sickle Cell Anaemia, visit the Sickle Cell Society  which works to make funding available to educate health carers and other professionals about the condition, fund essential welfare, research and educational projects and offer children  with the condition a much-needed holiday.

Categories: Health, Life Experience
11 interesting thoughts on this

10 Comments

  1. Posted August 25, 2011 at 8:16 am | Permalink

    Olivia, I salute you for keeping going. I think many people, myself included, would let it wear them down until they gave up on seeing people, doing anything, and definitely going to work. Keep smiling, I'm sure your friends and family are massively proud of you xxx

  2. Posted August 25, 2011 at 8:29 am | Permalink

    This is truly inspirational. Olivia, you prove that the human spirit is an amazing thing. I can only echo Linsey, your friends and family must be immensely proud of you for your strength. I hope you are proud of you too, because you bloody should be.

    Px

  3. Mahj
    Posted August 25, 2011 at 9:11 am | Permalink

    I think we need to have a parade for Olivia. A big one. With ticker tape and elephants.
    This is such a brutally honest and beautifully written piece and I am in awe of you for having the strength each day to just get on.
    Like Linsey and Penny have already said, I'm sure your friends and fam are bursting with pride when they see you/talk about you, you are AWESOME!

    xoxo

  4. Posted August 25, 2011 at 9:15 am | Permalink

    Wow Olivia you have amazing strength and courage and I can't imagine how I or anyone else would cope in that situation.

    I have seen people with this before and know the agony you are faced with and how helpless people around you must feel.

    Like Mahj and the girls said, your family and friends must be SO proud of you. I am and I don't even know you!!!

    I love how brilliantly honest your writing is and how even though you are suffering, like Anna said, you don't sound full of self pity. I know I would. I take my hat off to you.

    Lots of love,
    Alex xx

  5. Esme
    Posted August 25, 2011 at 9:37 am | Permalink

    I'm going to quote a postcard that one of my colleagues has on her office door – 'those who mind don't matter, and those who matter don't mind'.

    What I'm trying to say is, as long as you DO have those friends and family who can look past your medical issues and see you for the obviously incredibly strong and interesting woman you are, then you're good. Forget about those people who don't get it – life's too short.

    Well done for writing this.

    xx

  6. Posted August 25, 2011 at 9:51 am | Permalink

    I'm agreeing with everything posted above. I think you are wonderful too. xxx

  7. Posted August 25, 2011 at 10:52 am | Permalink

    I want to thank Olivia for writing this and for Anna, Aisling and Claire for thinking it worthy enough to post on AOW.

    Chronic illness isn't discussed often enough. I have Lupus and can relate to all the symptoms Olivia has written about. Sometimes putting one foot out the duvet takes up all the energy you have for one day – let alone trying to keep your life, work and relationships on an even keel.

    THIS is why I love AOW – your diversity and the fact you discuss life in a way that many people would never dare too.

    Loves,
    Rachel xx (my second comment this week – I'm on a roll!)

  8. Olivia
    Posted August 25, 2011 at 10:58 am | Permalink

    Thanks to all for your sweet and caring words. I actually cried when I read your comments. I don't feel special or inspiring, I just am but to see that people see that in me gives me strength even as I'm laying in my hospital bed.

    Thanks again xx

  9. Posted August 25, 2011 at 11:24 am | Permalink

    I agree with everything above. Olivia, you amaze me, as do you, Rachel. I know I sometimes take it for granted that I have a body that works pretty much how it should. But you two, who get up every day and face what you do, who work and try your best to live as well as you can, you are inspirations to us all.

    In relation to this, there is one thing us healthy ones can do to help people like Olivia: give blood. This post has reminded me I'm long overdue my donation.

  10. Posted August 29, 2011 at 1:21 pm | Permalink

    Olivia – you are truly inspirational, my mum has MS and sometimes i dont know how I would cope with illness, and its something no one ever talks about too. It takes huge courage to write about this on AOW.

    Big hugs to you and keep fighting!

    Rachie xo

One Trackback

  • By Eternally single and heading to 30 on February 29, 2012 at 10:09 am

    [...] single and heading to 30 We heard from Olivia a few weeks back, when she told us about her condition and the pain she deals with every day.  I promised there [...]

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Hello! We're Clare, Aisling and Anna and welcome to a corner of the world where smart, flawed, real women talk about the bigger picture; about their experiences, stories and opinions on all aspects of being a woman today, from marriage to feminism to pretty, too.

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