Control !

I'm trying to live in the moment. Lots of positive ways of taking each day as it comes. Hard, but worth trying.

I like to plan to, but have had to create a new mind set.

We booked our holiday to Italy at the end of last year, to go there end of May. I've looked forward to it for so long. We've now cancelled it, too risky for me right now. So disappointing, but I'll do other things, and won't have to stress about catching any infections or getting flares. Well go when I'm more stable.

You are 'controling' your life by making sure you control the 'beast'!

I control the things I can control and accept the rest. Apart from the pred dose and waiting for the PMR to subside I have lots of control. The harder part is accepting that I can't do all the things I want to do. I do what is most important, and pace myself. Its really little different to what I used to do before PMR - there were never enough hours in the day to do everything I wanted to do. Now there are simply less usable hours and I'm slower. And when I can't concentrate on something I do something else. Come back to the first later. And before I get tired I have a rest. I also do things differently, what is the best way to do something given my limitations.

I'm just managing different things in different ways to how I used to manage my life. The effects of PMR and pred are just a couple of extra constraints.

Not as easy as it sounds of course, but them's the breaks.

Judy, you will be able to find some way of getting some control back over your life, not all but a lot.  My way of getting some control back was to research anti-inflammatory foods and those that were known to be inflammatory, and to alter my diet accordingly.  Also, acceptance of a different routine for a while is key to coping, plus realising that although you have a life changing illness for a while, it is not life-threatening as for some unfortunate people.  Perhaps it was easier for me to find a way of accepting/adapting, as during an undiagnosed/untreated year I spent 4 months bedbound with severe PMR, travelling to rheumy appointments by ambulance and wheelchair.  Then GCA arrived on the scene.  Neither PMR/GCA nor steroids are any fun, but steroids saved my eyesight and gave me back my life.  You will adapt, and you will get better, I promise. 

I am a total control freak. PMR meant that I was unable to do a lot of things I could before, but now I have spread sheets with pred dose, blood test info, visits to doctor etc. I also have a diary planning what I can do each day, maximum of one main event. This can go out months ahead. I have become a nutrition nut as well. In fact PMR is life changing, but it has not stopped my control freakishness.