19 Aug 2013

A short story about being diagnosed with Lupus

If you don't already know, my name is Faye, I'm 27 and after working full time for 10 years I had to give up my job.  I didn't love my job per se but I've always loved working and earning money (mainly for shoes and wine) so giving up was a difficult decision and sadly it was beyond my control.  My body just refused to let me carry on.

I have an invisible illness called Lupus.  'What's that?' I hear you say....well in a nutshell its an auto-immune disease whereby the body turns on itself and causes all sorts of drama.  The main symptoms include:
Joint pain (sometimes so bad you can barely move)
Fatigue to the point where you're so tired you don't even know your own name
Skin rashes
Hair Loss
Kidney problems
There are MANY other symptoms and sadly sometimes Lupus can be fatal because the immune system can turn on the organs in your body causing inflammation which can lead to organ failure. Fortunately this is rare but people with Lupus have to be closely monitored in order to prevent this from happening.

Lupus has quiet periods (called remission) and not so quiet periods called flares.  Flare ups can last a week to several months.  I had a 6 month flare up once and was in agony everyday. Lupus is different for each person which can make it difficult to diagnose.

You can learn more by clicking on the 'What the feck is Lupus' tab at the top.

I was a perfectly normal young woman with no history of auto-immune diseases in my family.  One day I woke up with pain in my hands and to cut a very long story short, the pain spread, I was in agony, I was sleeping all the time and eventually I was diagnosed with Lupus. Upon being diagnosed I was actually relieved because I had been told by doctors and even friends and co-workers that this could be in my head. I was pretty certain it wasn't as the pain was very real indeed and going from an energetic, almost hyperactive person to one who sleeps 20 hours a day was not me at all.

I genuinely thought the diagnosis wouldn't change my life, I thought I'd 'just get on with it' so to speak but that I did not!! I tried my best to continue working but in the end I just couldn't.  I don't regret my decision but it was a hard decision to make; to accept that you're not the same person you once were isn't easy.  I worked for 3 years after my diagnosis and in the last year I was probably off work sick more than I was there.  I'd go to work, struggle through the day and battle my way to the end of the week until the weekend when I'd sleep for 20 hours, wake up, eat and go back to sleep.  I didn't have a life.

In June of this year I was diagnosed with Fibromyalgia as well as the Lupus and thats when I said to myself feck this!  I rang my boss that day and said I can't do this anymore and I haven't been back since. My health seems to have improved a bit as a result of giving up work and I would say I have a life now.  On days I feel awful I don't have to stress out about going to work and now that I'm not over doing it and pushing myself I find I have more energy.  I'm almost back to my pre lupus self.   I'm almost me again.

This journey (sorry to sound cliche!) has taught me so much.  I was never an ungrateful person before but now I appreciate so much more.  On a good day I thank the lord I'm having a good day and on a bad day I thank the lord I have great friends and family around me.  I've lost friends - it's funny how during the hard times you learn who is and isn't there for you but I've also gained friends.  I'm very lucky in that I have a very supportive boyfriend - I think most men in their early 20's would run a mile after what my boyfriend has seen me go through!  I count my blessings at the end of everyday.  Simple things like 'I am grateful for the love and support I have received today' or 'I had a nice lunch with my Mum today'  If you think about it, no matter how shit life is, there is always something to be thankful for.

So although Lupus has caused me lots of pain, suffering and sometimes lots of sadness it's also taught me to take a step back and think about the good things in life.

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