Forgive me everyone. I try not to be the kind of person who spills her guts to strangers but this place has become my refuge. The back story to this is a year ago I was very ill and on huge doses of prednisolone. The inflammatory arthritis had kicked in but i had only had one rheumatology appointment before i needed IV steroids for a scary attack of auto immune hearing loss. And I was so so thin.
I'm the middle of this we went on a long awaited family holiday. It was a disaster. I had convinced myself I was dying - the 60mg of pred a day probably didn't help my mental state!
I couldn't shake the despair and when o should have been looking at the beautiful sea and my beautiful children I was locked in a dark room in my head.
A year later and i am on the drugs and things are much better - except- with superb timing I chose the last couple of days to google the attacks of what I now know is called trigeminal neuralgia. And yes it can be caused by sjorgens or rheumatoid or lupus. And I would love to hear from anyone who gets bouts of this.....But it can also be a symptom of ms. And my head is in a spin. I just can't let myself do this again - diagnose myself on the basis of google - and ruin the holiday that we have booked back to the same place this year. The whole point was to go there happy instead of mental!!!!
I know what I must do. I must put this to the back of my mind until my neurology appointments on the 19th April. I can't throw away another chance to cherish what I have and hold so dear. But I am scared that I won't be strong enough.
Does anyone have any words of wisdom? If I even mention this to my husband I fear it will set the agenda and help no one. I can't put my family through another week of fearing for their mum.
Sorry about how long this is. Thank you