Hi Susan and Michelle,

Hope you two have had or are having a great Mother’s Day. Mine started out a bit disastrous (24 yr old adopted son) however let’s not go there......

Surprisingly I never have a problem going back to sleep after taking the 3 - 4 am dose - 14 mgs. I don’t set an alarm now, like I did when I first implemented this regime. I just take it when I need to go to the ’loo’ (do you know that word?) which most times falls in that time slot. If I wake later I don’t stress, I just take it then.

My second dose is about 8am or when I wake up just before getting out of bed - 6mgs. I take my last dose of the day at 3 -4 pm and that is only 4 mgs, so my total at the moment is 24mgs of Hydrocortisone.

It came home to me again today how frustrating the monitoring for this condition is. Even though my last bloods showed a good level, things change in our lives/circumstances from week to week and unlike Diabetics we have to wait up to six months to be re-tested. Goodness knows what happens in between!

An acquaintance who is probably five or more years older than me was telling me and another person today that she had extended her working hours as a music teacher last week and has added another day to her working week. The tears started to well up in my eyes as I thought  "how do you have the energy to work, leave alone add more to your working week" while waves of exhaustion enveloped me. I felt overwhelmed and immensely guilty that I can no longer work. I quickly looked away so they would not see me choked with emotion.

I think it is in these types of things that we do not have the support or validation of people. It is a relatively hidden affliction and unlike someone with a leg missing, no-one can know what we are experiencing. I once read a book called "I’m Sick and Tried of Feeling Sick and Tired" by Donoghue and Siegal which discusses unseen illnesses or ICI’s ’invisible chronic illnesses’. I found this book to be very helpful...in fact I probably need to read it again as it’s been a tough week this past week.

Michelle I identify very much with what you said by feeling very stressed when bombarded by people coming at you all at once. I had a good chance to practice calm today, at our Mother’s Day family gathering when most of the family were there and it was all chatter and talk. I sort of withdrew and focussed on one area of discussion at a time rather than trying to be part of everyone’s discussion. It was still very tiring though.

My CAH sister is having a partial knee replacement next Monday (May21) and while under anaesthetic the surgeon is doing an arthroscopy on her other knee. If that requires a partial replacement he will do that at the same time but if it requires a complete knee replacement he will have to re-schedule another surgery time. Because she is too young for normal knee replacements he wants to make very sure that he does not do more than he has to do at this stage. She is nervous about it but the surgeon has arranged for her to see his on-call endocrinologist this week to discuss the adrenal angle while she is undergoing surgery and in the days after. He will then write up his orders and follow-up with her during and after the surgery. So fingers crossed all goes well for her.