Ehlers-Despair Syndrome

Everyday, I wonder in despair.

How long do I have before arthritis takes me down? Now that I am out and about, finally, for the first time in my life. When will I end up in too much pain to function, too much pain to sleep? I push those thoughts away, and live for now. But everyday, I wonder in despair.

I try to make the best choices. I try to have faith. But quietly, to myself, admitting it to no one, I despair. 

I will live my life and my joints will do what they will.

London, August, 2017

London is fabulous. We had never been. Mr. Pennington got a shave at Fortnum & Mason. He gets a proper British shave when he is in India, too.

 So relaxing to watch.

So relaxing to watch.

Then we were off to tea with the Queen at Buckingham Palace.

 London is fabulous.

London is fabulous.

On our last day, we toured St. Paul’s Cathedral. Very special place. I always take the time to light a candle and make a wish in a church, if I feel the vibe is good. EDSers are highly sensitive people. 

 Hey God, it’s me, begging for more.

Hey God, it’s me, begging for more.

We climbed the stairs to the top of the rotunda, a very, very long way up.

 Are we there yet?

Are we there yet?

View of London from way up high. I felt close to God, and not just because I was terrified of creeping around the rotunda, which is the only way back down. Okay, that was part of it. But St. Paul’s really is a very special place. 

 OMG so scary. Clinging to the wall.

OMG so scary. Clinging to the wall.

Mr. Pennington was fearless.

 Not scared to death.

Not scared to death.

Is This Too Much For Me?

That day we walked 9.5 miles and climbed 31 floors. I had on my backpack. My knees, hips, spine and feet did not complain. I had been keeping up this pace in Europe for six weeks. I did not run out of endurance.

My knees were screaming at the start of the trip, and my hips hurt, too, with all those flights of stairs and uneven streets in Paris, but it all got better as my trip went on. I stopped taping my knee caps in place. They responded to the demands of running around Paris and adjusted. Can you imagine?

 The early part of my trip. 

The early part of my trip. 

I did a lot of icing at the beginning, too. I love ice! 

IMG_5196.jpg

After I week or so, I no longer need to. That was a fast adjustment. 

My last day in Europe:

9.5 miles and 31 floors. No problems.

 

Image-1-1.jpg

I could not do this when I was a teenager, not even for one day. I did not have the strength. I was too tired, always. My knees and feet hurt too much then. So did my back. But now, everyday for six weeks, I did what never was possible at any point in my pre-injecting-ascorbic-acid life, and I only felt much better.

Still, I Wondered in Despair

Am I destroying my joints? Of course I must be.

 Will I get to do this again in my life? 

Will I get to do this again in my life? 

Yes, I will.

I was healing.

Did you see this post? My arthritis healed in my knees, hips, C-spine and L-spine.

Just some left in my foot and T-spine, which had improved. Now, I am hard at work on those areas.