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Posted 17th January 2013 at 04:24 PM by Ebonytears

I've been dealing, I've been coping...until today. Today I didn't cope and, because of that I spoke to my daughter in a way that I am ashamed of. So I'm putting this here so that some of that frustration can be vented. I don't have RL friends to 'have coffee with'. I know people don't believe me but it's true. The one person I considered a friend told me 'I don't have room in my life to deal with this' when I told her I have Lupus and I haven't heard from her since.

Lupus. Systemic Lupus Erythematosus to be exact. Oh don't get me wrong...it's no surprise to me and was actually a relief when the doctor finally said it. You see for the past 5-6 years we've been trying to pinpoint what's wrong with me. Now we know I still don't quite tick all the boxes but, with a family history of autoimmune diseases (mum and 2 aunts with various autoimmune diseases), past history of psiorosis and the symptoms I do have the doc thinks it's only a matter of time and we've started treatment now to try to slow that down. You see the thing I need to tick the final box is inflamation of one of my internal organs. Kidneys are the most likely. I'm quite happy to start treatment now rather than wait for kidney failure to be totally honest with you.

I'm learning to manage my condition. I don't go out in the sun without being fully covered and wearing sunscreen. The sun triggers my symptoms you see and can lead to inflammation of my joints, nausea, headaches and fatigue.
I'm learning to listen to my body and take steps to deal with the inflammation in my joints. My hands frustrate me a bit when they suddenly refuse to pick things up and going to stand up only to discover I can't is also sometimes frustrating.

The one thing I'm struggling to cope with is the fatigue. Vaccuming the floor and then needing to rest...only to wake 2 hours later is irritating the hell out of me. I am tired of being tired. I know that if I try to push through it all that will mean is pain later when my joints become inflammed, nausea, headaches etc etc. So I rest when I feel tired...it just seems to feel like I'm tired all the time.

I am learning to break down household chores so that I rest in between and take satisfaction in what I can do. My house isn't as clean as I would like but it's not too bad and I've been ok with that.

Not today. Today I see dust...everywhere. And I can't get rid of it all because I keep falling asleep. I pushed it too hard and the inflammation started. When I tried to get up out of my chair I couldn't. My daughter asked if I needed help and I snapped at her. I can bloodywell stand up I'm not crippled you know! Yeah...took me three goes but the stubborness won through in the end (paying for that now too). But I am ashamed of the way I spoke to her and treated her, she deserves better from me.

And I do know what's lead to this...it's the whole Disability Support Pension thing. Yep the doc says that I need to go on it because 'I wouldn't hire you'. I think that was harder to hear than 'you have Lupus'. I've always worked, at whatever job was available at the time. Seasonal work, cleaning...whatever would pay. Mostly physical work that others don't like to do, it didn't matter to me...it payed the bills. For the past 5 years I've been doing a Bachalor of Social Science so that I can get a better job. I told the kids when I got my degree things would be better. But now they're not going to be...not for awhile anyway. Not till I'm 'stable'. It makes me angry, frustrated and sad. My kids deserve better.

But this is how it is. I can't change it...but I can 'manage' it. For someone who always had things planned day-to-day for months in advance I now have to learn to live each day as it comes. I may not be able to work but I am the Media Officer for my local SES Unit and that is now my Job I will learn to not push myself, to not expect so much of myself or be so self-critical and I will learn to accept help. It may just take a little time that's all.
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  1. Old Comment
    diablo52270's Avatar
    Hello Ebony. I read your entry and am so sorry for what you are going through. My teenage daughter was diagnosed with Lupus two years ago. It was a scary time for the whole family. Her suffering seemed unbearable. The meds help as does a strict diet. I know every case is different and with luck you will find what works for you. Hang in there...
    Posted 12th February 2013 at 08:07 AM by diablo52270 diablo52270 is offline
  2. Old Comment
    Acheronis's Avatar
    Strength, hope and resolve for you Ebony. Good job on taking each day and doing what you can and are able to do.
    Posted 22nd March 2013 at 12:53 AM by Acheronis Acheronis is offline

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