New from Perth, Western Australia

[Col 23]

Hi Deanne
Noticed your in Bicton, Im in Henley Brook. Perhaps we should try and catch up mid way if you feel comfortable or have the energy between Doctors appointment. Im not working at the moment. Im not doing any exercise at the moment as it takes all my energy just to get out bed, shower and get through the day. Doc has advised to go at 10%. I dream about going for a swim or a walk. I have a treadmill that is collecting dust. However I hope at some stage I can return to exercise. I too have the moon face, fat on the stomach and my mouth feels likes its full of soap suds therefore food taste like that as well. I have foxtel as well and the interesting thing is I never get to see the end of most shows as I fall asleep, lucky if I record I get to see them again or if they are repeated. So over it rather be a bit more productive. My husband is extremely supportive and the kids are all living independent now.
cheers Col 23

[sharon]

Hi Col 23,
i gave my treadmill away, it was too depressing watching it gather the dust, I keep telling myself i will walk tomorrow, i may just actually do it one day and shock myself, and the dr. LOL
I have decided to stop getting frustrated with this body, accept what ever energy level i have for the day, and work within those limits, and not what i decide i should have and just to stop stressing about, what i get done, gets done. (it has only taken me 3yrs to learn that gem!)

Deanne, & no you are not a hyperchondriac, i can relate to how you feel 100%, my extended family, and some friends just don't get it. The trouble i have found with wg is that comes with some pretty good masks, i have come to the realisation that we look pretty much on the outside as we always have done, but on the inside very different, only those closest to us, see the cracks, the days spent in bed, general crankiness due to the fatigue and just not having the same spark (i feel pretty dull, kinda like i have a dimmer switch turned on a lot of the time), Your body has new limits, sometimes hanging out the washing is akin to a marathon, show kindness to yourself.
take care

[Col 23]

Can so relate to that Sharon. Thanks just puts me at ease a bit as Im waiting for a good day. No energy, sleep patterns all over the place, wake up for 1/2 hour sleep for 4 - 5 hours, wake up for 2 hours sleep for 3 hours and so on. Weird. Cheers Col 23

[sharon]

Col 23 glad i could help, i think our bodies find it really hard to get into any "normal" sleep routine, the fatigue and pred (sorry i can't remember if you are on it) play havoc. I try to ration out my energy now, kinda like my choc LOL

[Carol]

Hi Deanne Welcome to the group. I'm also from Australia and was diagosed 2 years ago. TODAY is my first day without Prednisolone. So now all I'm on is 3 Imuran a day and ES Bactrim 3 times a week and Calcium and Actonel for calcium laying down. I'm excited but of course a little nervous. I'm very well at the moment - have just have 2 wonderful months holidaying in Alaska and USA. I felt so good in the dry desert air of Arizona but got back yesterday to cold weather. Now I have no excuse to lose weight except that I went ot the supermarket today to get the fridge stocked up and of course after 2 months without big blocks of Cadburys I've stocked up! Initially I found this site just so important but as I have got weller (I think that might be bad grammar) I only look on the site occasionally to see how others are going. if you ever want to chat I have a free hour on my mobile each night at 8pm. Just contact me on my private messages. Bye Carol

[Sangye]

Carol, congratulations on getting off pred! Big hooray for you!!

I miss the dry Arizona climate so much. It was great for my constitution. The East Coast humidity is awful for me.

[elephant]

Yes congrats Carol for getting of prednisone. That is a dream come true!

[janene]

Dear Deanne
My name is Janene. I live in Melbourne. Diagnosed dec 2009. I felt alone. Found this site. Just reading peoples posts makes you feel less alone and more positive

[janene]

Dear Carol
How did you feel at the start on Imuran
Janene

[Deanne Hull]

Hi Janene, how are you going, I am very new as well and this has been very helpful to me. I love Melbourne and my sister lives in St Kilda and love chapel street for shopping. It is not all doom and gloom, support in any way is essential...Deanne