just thought of this... With this " demon" you have no control and I'm a control freak!! I want to control my life not see how the " beast" will affect me today , this minute , this hour, this second... Whatever... Getting a bit crazy!!!
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.
Wow, so disappointing is to say the least! Sorry to hear that, Susanne. However I'm in a very NOT positive mood. But then moods and days fluctuate along with symptoms, unfortunately..
Sorry
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.
Not sure I agree John, the "beast" makes the or creates the problem and I must respond .. The control comes from the outside whereas I want the control to come from within ..me. With this I need to react or surrender !
!
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.
MrsO,
I'm sorry you had to go through that 4 months.... unfair and discouraging to say the least.
My prayers and all the best as our lives go on....
I read a book about how we can do things mindlessly.... suggested trying to do things differently and being mindful of what we are doing.... I like the idea BUT I was in control of the deciding how I would react or respond to doing things differently.... now the "beast" is in the driver's seat !!
sorry....
Judy - Thats the mindset I have come to accept, otherwise I too might be 'round the bend' I think using the term beast is not quite the right attitude, all sorts of thing happen in life and one has to accept this even if we don't like it! Life has its problems at some point or other and I have learnt to move on and try to stay positive. Read my bio on the forum?
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.
I read your bio.... I still like calling it the "beast".... I am a physical therapist and had to turn down a great position because of the "beast". I could not committ to something that I wasn't sure I'd be able to come through on... not fair to employer... I did have my own office once... closed as I took care of my father for 5 years ( he had dementia ) after my mother died. Sooooooooooooooo yes we all have something...
I have my good days and bad days as we all do... But still the "beast" is there waiting !!!!
Take care John, you and all are in my prayers... judy
I think this is the bit of it that needs the acceptance. I don't think I have ever been a real control freak so maybe it was easier for me. I tried all the things I could change and then, when the PMR turned into a big truck and ran me over, I did the research.
Pred used properly made a massive difference - and then I worked on finding out all I could about the disease and how to manage it and, above all, how to manage the pred dose best. I think that has been pretty successful - so now I go out and try to preach the word. Life has changed - but I'm not sure it is significantly less rewarding. Some things are better - I have some wonderful friends now.
Good !! keep controling ( is that one l or two l's )
I was wondering which side of the pond you are - but in this case it's two whichever...
Eileen, I'm grateful for your research, knowledge. I too have and still do lots of research... I send it to physicians ( they probably want to kill me ! ) but too bad.. Researching and learning has always been my goals as a health care provider.
I'm in the United States, Eileen.
John, another thought... I have two chihuahus (spelling !) one is a female and I call her the "beast" because she always wants her way. She pushes ahead of my other guy and when he gets petted she pushes him out of the way so she can get some. She wants to be in "control". She even sits in front of him !! Wild little one. I've been trying to train her for years now but she still wants her way .... Little Beast !!
Judy, my post was meant to be positive! You are in a dark place right now and I'm so sorry. I think a lot of us have been there.
On a slightly different note, I paint and am currently reading a book called "Drawing on the Right Side of the Brain", which challenges our perception of what we see and do. A lot of us work with the logical left side of the Brain. The right side controls creativity and spontaneity and somehow, I think this also relates to how we manage to live our lives when illness strikes.
Read that book, Susanne and loved it.... are you drawing?