My name is Julie. I live in Pembrokeshire, West Wales. I was diagnosed with Rhupus (RA/Lupus overlap) back in December. I've been on hydroxychloroquine and methotrexate since.
Like most of you on this site I have been through many ups and downs since diagnosis. Little change in my symptoms, identity crises, denial, anger.....and then after about 5 months I had a really good spell. Felt almost 'normal'.
But week before last I had a flare.
On top of back to feeling pretty rubbish I also felt bitterly disappointed. I thought things were settling down, I thought the meds were kicking in and everything I'm trying to do to help myself were all working. But it all came back. Just to remind me it's in control, not me!
Feeling a little better today but my hands and feet feel like balloons. Hot, swollen and don't want to work. My boys will have to make their own breakfast again!
But I'm trying to stay positive.
I've accepted that life as I knew it is over. I used to be a keen runner, cyclist and general fitness freak. Always on the go. I still manage to walk the dog, when I have the energy and I do yoga when I know I'll have the energy to get back off the ground once I'm down there! So life isn't all bad. I'm still working, part time, and I have a very understanding boss. My family, especially my husband, have also been very understanding.
I count my blessings everyday even with this horrible, debilitating, unpredictable condition. But I get scared. Not knowing what's likely to be around the corner is scary.
This site is excellent though. So much support out there, answers from people who are going through it all themselves and people who won't judge when the bad days come.