I am thrilled to find this group and finally talk to people who not only understand but can suggest things to help me cope! So first off I want to say THANK YOU.
I have always had difficulty being the patient. It's been sort of a joke in my family that when I was ill, everyone cleared out. I am an exceptionally good nurse, and I think that my own low pain tolerance and misery when ill makes me a more compassionate nurse. They always say nurses make the worst patients.
I have a million questions and am trying to determine if I should start other threads or ask them all here... I've had this now 5 mos. I'm still out of work. My position has been eliminated as if June 24... I am trying to be grateful and relieved as the pressure to return was a significant stressor within me... But one of the things I am still struggling with is how to be okay not knowing the future. Not having control is still a major challenge for me emotionally.
How does one "listen" to their body? When I sleep until noon that means my body needed it so it's ok? Because all my life I would not allow myself to waste half the day in bed! I rarely have pain, but now whenever anything happens, I wonder if it's PMR or just benign. I drive myself crazy! I get a headache and worry. I have had chronic back pain most of my life... Well controlled with chiropractic visits for the past 15 years.. (Oddly enough THAT pain vanished when I started steroids... My guess is that it got rid of inflammation so the back and neck pain ceased. )This month, the back pain is whimpering a little bit here and there.... And I wonder - just me? Or PMR??
Do "flares" occur during dose reduction soon after the lowered dose? What if my dose has been the same for 6 weeks... Could it occur then?
The pain in my toes (see post " I'm new here") woke me once in the night. I cannot elicit the pain by manipulation or pressure on the toes, there is no swelling or redness. I would just shrug it off as a phantom pain but it is so intense when it hits (yes I'm a wimp but it IS bad)!
I feel so overwhelmed. I have so little control. I am seeing a therapist weekly to help me cope, and her help was invaluable in jan/ feb when I was just falling apart emotionally at the onset of this whole nightmare. I do have a hx of depression and have been on Prozac for 25 years... Also, well controlled... Until this.
I try to be grateful for what I have. I realize I really am lucky, so many others have it so much worse. But I feel like I'm 20 years older than I am. My coping mechanism has always always been to simply PUSH THROUGH whatever the barrier is. I raised 2 girls alone working 3 jobs at a time...I've never known quit or failure. If I push through now, it costs me DAYS to recover. It's so hard. To understand what I can do, and what I can't do.
My daughter got married last month. It was a weekend at a farm, with lots of action and a lot of hard work. I planned ahead to make it as easy on myself as I could, etc... And of course, I way over did. It was a lovely wedding and reception... What I can remember of it 😔. I slept for a week following. And now I have big chunks of hazy memories and some totally blank.
My grandson graduates high school next weekend. I have decided not to attend as travel and ceremony combined would take 6+ hours and I am learning I cannot ever successfully exceed 4 hours of "activity" in the day. This makes me so angry! I feel so helpless and victimized. Then I become distressed because I am so upset! It's a vicious circle.
How does one listen? How do you pace yourself? How much exercise ( ! ) should I be attempting? How do I recognize a flare? How do I relearn how to live????