The Quest to Motivate, Move and be in Motion
I don't have to tell you. Most days when I wake up, it can take me about 2 hours to feel as doctor's say "as good as your going to feel for the day". Don't you just love Doctors?
But even after those two hours of drinking coffee and reading, I may still have substantial stiffness. With my CPPD disease, it mainly affects my feet and ankles, knees, hips and wrists. And as you know, it can be in one spot, jump around or get the whole symphony of pain at once.
I was fortunate to go into New York on Saturday through Sunday for a special dinner we won at an auction. I tried to rest as much as possible, but by the time we got into the city and walked around I only had some down time before we had a 7:30 cocktails before dinner.
I was not feeling my best. But I was not feeling my worst. I could do it. So we went, had a wonderful time and we didn't get home until 11:30 which is late for me.
On Sunday we walked and walked. It felt good to stretch my legs but it was my right hip that was concerning me. I get these shooting pains emanating from my hip down my leg. Momentarily, my hip is useless and I could fall. I usually just squeal in pain and move on.
Then those thoughts creep in.... My god! I am going to need to bring a cane or something, just to keep from falling. Is this the way it will be from now on? All that anxiety and guilt starts seeping in. Even explaining what is happening is hard to express. Mostly because we have no clue.
My doctor says that if I don't do something to slow the progression of deterioration in my joints I am looking at crutches or a wheel chair.... He means biologic drugs...
I weaned myself off of Prednisone for now. I am glad for now but I know that 15 mgs of prednisone would kick start my energy, but with all the baggage those little speed balls give you.
In many ways, I feel like I am letting everyone down, including myself. However, then the pain can take on a life on its own.
I know it is not rational... it is hard to be rational when you are in constant pain and those around you barely understand.
So today I had an appointment with my old trainer that came back to my gym at 4:00pm. My problem is that I either have to not do much and wait, or go ahead with chores until it would be time to go.
But today was one of those days. The stiffness lasted and just fighting the pain all day made me exhausted. I had to cancel the training and take my tramadol and xanax to try and curb the pain and anxiety.
I slept for an hour awakening to that same morning stiffness. Its like deja vue all over again. So I made some tea and sat to make a post in my blog. That I can do.
One of my main problems is that I never know how much energy I have and how long it will last. On a good day last week, I was able to go on a 16 mile bike ride with no residual effects.
Just a day and a half walking in NYC has basically zapped two full days of energy from me.
Go figure.
So having pre-made plans really means nothing if you are like me.
You have no idea how you will feel so you say yes to whatever the event. Then as it approaches, if you are feeling worse you worry you can't do it, or worse, you worry that you will run out of gas and melt down during your excursion.
You can't stop your life, but it takes serious management.
So what is the dilemma? There seems to be no rhyme or reason as to the energy factor. Like today. I rested yesterday after the trip.
Today I would start back at the gym.
But no energy was left in the tank. It's so frustrating.
I would be curious to know if anyone out there with these Auto-immune disorders has any game plan for tackling these issues of energy: how to get it, keep it or store it.
I am getting better at letting my wife know when I think I can't do something. And you can see the disappointment on her face.
My therapist says its ok for her to feel disappointed. I can't control her feelings and she is entitled to them. But you know that doesn't make you feel any better, it zaps more energy.
Gerbil on a treadmill.
So today I decided on rest. Tomorrow morning I will try the gym
again. I hope I will have the energy, drive and motivation.
How do you fight this energy failure?
I would like to know!
Until then...
Keep Up the Good Fight!
Bart Connors Szczarba
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