Saturday, February 27, 2010

In the begining

Hmmm ... well I reckon I should start with some background info about me.
I'm 41 now and until the age of 32 my life was pretty awesome! I was living with my partner of 10 years Robert, I had a great job as a graphic designer, loving family and friends .... it really couldn't have been better.

Decemeber 2000 I came home one day and Robert was laying dead on our bed. WTF? Yep, it was certainly a shock and unfortunatly things just got worse. I lost my job because gay people didn't and still don't have equal rights. My boss sacked me because I needed to have time off to grieve. It was a long road.

In August 2007 (or was it 2008?) I came down with what I thought was a bad flu after overdoing it at the gym. The flu never went away. It took about 4 weeks to settle down but it remained at a low level and from that moment on I only ever was able to work part time.

I had another bout of this 'flu' after one of my best friends had a very serious motorbike accident. He unforunatly had the accident out of town and I felt I needed to be with him (didn't initially know if he was going to live), so I staying in a motel by the hospital for a month or so and then for the next 3 months I spent 4 days a week in Brisbane working and 3 days a week staying with him at the hospital.

Once he was finally released from hospital I became his carer and companion (it was a very dark time for him and I found peace of mind by knowing i was doing my best to help him through). By October 2009 he was pretty much back on his feet and I no longer needed to care for him. It was at this point that my body totally crashed.

I woke up one day with another bout of 'flu' but this time it was so bad I just couldn't move. To my disbelief I went further downhill and early 2010 I found myself in hospital unable to walk or do anything. I had every test imaginable in order to rule out any other possibility. As it turns out it looks like I have Chronic fatige Syndrome, although there is no real diagnostic test so I don't know for sure??

So now I am trying to adapt to a new life. Stay tuned ... I have LOTS to say!!!!


  1. Hi, Lee -

    Thanks for the kind comments about my blog. I'm glad I've inspired you to start your own. You're off to a great start! Think you'll find that blogging is very rewarding - not just expressing yourself but also the online relationships you'll develop here. It makes such a difference not to feel alone in this struggle! We all have a lot in common.

    The best way to grow an audience for your blog is to visit other CFS blogs and leave comments. There's a wonderful community of CFS bloggers who are very supportive and caring.

    Good luck - I'll be back!


  2. HI Lee - followed your link from Sue's blog and will definitely come back. Good luck on your journey to being a chronic blogger (pun intended) and to health :)

  3. G'day Sue and PJ, thanks for dropping in to say hello :) Hope to see you again sometime!

  4. Thanks again for all your support during my bleakest time Midder...wish I could do more for you...but you know to ask me for anything you think I can do! Keep positive and keep your chin up! x

  5. Please take care and know that you are not alone. Thank goodness for the internet when you are unable to even leave the house. I had a time last spring when I could only go out every 3 days to get food and had to lie down most of the time. I'm at least back to where I can go for a walk more days than not, but still can't get much work done. I hope you get better again soon, to at least a basic level of functioning for quality of life!

  6. Hi Lee...I hope you're managing to keep your mind and creativity active and boredom at bay. What you went through with Robert is beyond awful. His sudden passing is hellish enough...but to have to deal with all the unfair beuracracy...Maybe treat this 'down time' as a sign you need to kick back, REST and indulge in the simple things you enjoy in life...absolute basics like DVD marathons, laughs with mates, colouring in (my latest fad!), inane flirting with weirdos on iNet dating sites (yep...gotta be REAL bored...).

    I think I can relate to how you're feeling. My health has resembled that of those on the CFS links on your blog (I've just had a quick peek). I was diagnosed with Hashimotos/hypothyroidism about 15yrs ago. Then about 8yrs ago I had a 'virus' I couldn't shake (for about a year) which turned out to be glandular fever. I ended up in hospital on a drip having a spinal tap after collapsing. I haven't felt completely well since. NOW I've been off work for over a year because I pass (LOTSA) blood 3 or 4 times a day (every time I go to the loo). I'm undergoing tests & seeing a gastroenterologist at the hospital. I'm permanently nauseas and EXHAUSTED but the 'experts' have no idea what's wrong with me. Meanwhile, I've been gushing blood over a yr & there's no end in sight. Doctor's are useless. I'm seriously considering writing to Hugh Laurie for advice....need Dr House.

    The point of my blurb is that I can relate (at least to some extent) to how disheartening & frustrating it can be to constantly have to pike out of social get-togethers or 'being there' for friends. For now I've resorted to just keeping connected with a couple of friends who understand & are happy to settle for emails & txts until I feel better ( NO idea WHEN that'll be).

    ANYWAY. I hope I haven't bored you.

    GOOD LUCK in your dealings with Centrelink - and remember to document EVERYTHING (as each person you speak with will give you conficting info or accuse you of doing the wrong thing when they stuff up). Fortunately my dealings with the system has been easy - can't fake bloodloss. BUT I was unemployed for 8mths about 6yrs ago and they were EXASPERATING to deal with. It's an EXTREMELY inefficient system + they're goal is to not give away $$$ so they will try and discredit you any way they can. I'm sure - with your docs support - you'll be OK. Stand your ground and don't let them hypnotise you into a confused state :-) BUT balance this with a very gentle NON-patronising tone of voice (when they drag you around in circles and contradict themselves. They are very sensitive creatures.

    OK....I'm pooped and need a lie down. Let me know if you want to borrow any of my colouring-in books (bought for when young cousins visit) or recipes (I have a massive collection of healthy vegetarian cookbooks...and some seriously UNealthy CAKEbooks. Ying Yang blah blah blah....

    I'll meet you back on f/b. I don't go on much but check in every so often to check what I'm missing out on.

    Rest up and be good to yourself. You've earned it. If all you can do is ZILCH then so be it. 1 day, when you're better, you'll be run off your feet & will wish you could stop & 'breath'.