4 Apr 2013

This one goes out to my haters

As a result of my illness I have made the very difficult decision to give up work.  I have now accepted that I am unable to hold down a full-time job whilst dealing with a debilitating illness.  

Initially, I was worried about what people would think but upon reflection I have decided, 'Frankly my dear, I don't give a damn!'

I might look well on the outside and put on a brave face in public which might make people think, 'She's fine, why is she giving up work?'  But the truth is, I'm not fine.  I am in pain every single day, sometimes so bad I am paralysed with it and can't move from my bed.  (I recently spent 4 days in bed and the only way I could get to the bathroom was to crawl).  Sometimes I have to ask Sami to wash my hair and dress me because I am unable to. Sometimes I am so depressed with it all that I hide under the duvet and cry for hours.  Sometimes the exhaustion caused by the disease leaves me so weak I can't even lift a cup.  And this is just one of the illnesses I live with!  This isn't even taking into consideration all the horrible side effects and infections I get as a result of taking immune suppressing drugs.

So, to anyone that has passed judgement - please feel free to step into my shoes and live a day in my life because I'd love to see how you'd cope. Biyartch!

Thank you and goodnight. x


  1. I have the same problem but different medical condition I'm in part remission from bone cancer and when your illness is invisible and you look ok from the outside but inside the pain is unbearable even if you tell some people that but 'still you look well.' Well I don't feel it!
    It's hard going through chronic pain each day and like you for my illness I can be in bed many days at a time.
    Do what you feel is right, they can't live your life.
    Best Becki xx
    My blog: www.copingwiththebigc.blogspot.co.uk

  2. Thanks Becki =0) Sorry to hear you have gone through bone cancer.
    My heart goes out to you - you are one brave lady xxx

    I will check out your blog =0) xx

  3. I worked nearly non-stop from age 16 (earlier, in my mom's business actually) to 47. I suffered with Lupus symptoms for years but it finally got bad enough that I drove myself to the emergency room (march 14 2013). That is when I got the diagnosis (yes, I have the pains, some rashes, had some swelling in ankles and face on and off, mouth sores, and fluid on the lungs). I have not worked a day since then! Until I get this thing managed - it is not possible (not without literally risking my life).

    Sometimes on a few good hours of a very good day, I feel guilty. I feel like... 'gee, I could have worked today'. And then the next 'lupus surprise' comes around and I'm like "WTF was I thinking?!?"

    so... I'm taking one day at a time right now.
    Don't feel guilty. The best thing you can do is reduce stress and physical activity, prepare wholesome non-inflammatory foods and HEAL! (I'm taking my own advice!)

  4. Thanks Valerie! Sometimes we just got to give in and accept our limitations. Doesn't make us a lesser person. xxxx

  5. wow. maybe now people will get it. i have lupus but nobody seems to understand any of it. thanks for opening some eyes.