Is it Still working for you?

I’m a pretty tough customer in physical therapy. But, the other day my physical therapist said something very poignant that gave me pause. I’d like to share it with you.

He said, because I’ve had chronic illness for so long, I’ve adopted so many coping strategies to help me through. So many techniques and methods I call my own to get me from one day to the next. (And here he is teaching this old dog new tricks.) However, he was right when he asked me, “Is all of this still working for you?”

You start collecting techniques from the very first moment you hear the word, “permanent” or “chronic.” Our doctors don’t help as quickly as our own shifts and wriggles take effect. Soon enough, you’ve built a pattern for yourself that is keeping you going. Over so many years, and multiple conditions, you better believe I have some modalities and some definite patterns! Are they still working for me?

Could they be holding me back?

Adaptation is paramount with chronic illness. You have to be able to rebuild in order to find purpose again, to find yourself again amid your ever-changing body. But as your body changes, does the structure that you built change with it?

For instance, if all you were once able to do is use the computer or your smart phone, maybe you grew a strong online network which gave you purpose. You could have done nothing instead, but you were brave and reached out to others online. It was incredible how much your work online distracted from your illness and impacted your life and the lives of others! It may have even saved your life. But as your body changes, you realize you can do more tactile work like crafting. Is spending as much time on the computer still working for you? Or, could it even be holding you back from moving more?

I have to go over so many of the coping tools I use- all of the amazing methods which have helped me to this point and ask this question. It’s spring after all; time for a spring cleaning of sorts. Is it STILL working? It may have saved my life last year, but will it take me to my next goal this year?

Multiple Sensitivities…of the Heart

Breathe. Don’t pass out. Keep moving forward. One foot in front of the other. Pay no attention to your pain. Focus on your breathing. Focus on your legs not giving out. Don’t fall down! Ok, throwing up would be the worst right now. Here come the shakes… Breath girl! The light? Do we have to do the light? Oh no, there goes your head. I can’t see, I can’t see… This hurts too much. I can’t do this. I have to do it. Okay, let’s do it.

*****

This was this morning in physical therapy. My physical therapist comes by once each week. Some days are good, some days are bad. Today was a great day, so we decided to do something I’ve never done before… at least not for almost 5 years: go outside.

When I go to doctor’s appointments, I’m usually taken out from my bed in a wheelchair. I have a face mask on, ear plugs, a head set, and I keep my head down between my knees to keep my blood pressure from plummeting, so I don’t faint. If I’m in the seated position too long, over with my head down, I have to get out of the chair and lay down on the ground with my knees tucked to regulate my blood pressure, breathing, and head pain. (Laying in an elevator or doctor’s office waiting room hasn’t made me any friends-yet.) When I get to the car, I lay in the backseat under pillows and blankets for arduous the drive.

Today, I wasn’t going anywhere but the porch. It was a warm overcast day, and happened to be very quiet on our road. What better day than this to do an “exposure” to sound and light? I don’t have OCD or an anxiety disorder and I’m not in Cognitive Behavioral Therapy, but desensitizing your body and brain to stressors and pain are very similar in traditional Physical Therapy. My PT uses Cardiac Rehab Therapy and Pain Rehab Therapy with me to get me stronger and moving… and it IS working. My fatigue is lessening, I’m stronger, I can tolerate more sound and light than I used to, I don’t pass out like before, and I’m progressing in general.

But today, there was another sensitivity I didn’t expect to encounter…

I bent over my brand new walker, slowly moving out toward the door for the first time, swapping my eye-mask for dark tinted sunglasses. Because I was pretty much blinded by the daylight, I was trying to maneuver awkwardly out the front door. My brother had joined in with my physical therapist to help me on my pilgrimage. I was so focused on all of the physical aspects written in the first paragraph that it caught me so off guard when my physical therapist wrapped his hand around my waste and grabbed my hand to help me out. That’s the moment I choked back tears. That’s the pain that hurt the worst.

It wasn’t the horrible pain in my head, the ringing in my ears, the screaming sound of birds chirping, or my heart racing from trying to be on my feet for too long, it was the caring touch of another person that reminded me so much of my ex-spouse… that almost took me down.

Maybe that sounds creepy to you, but if you have a condition like CRPS/RSD in which people around you are unsure where and how they can touch you, so much that they decide it’s best not to at all, you understand the touch aspect of this. Or, if you are no longer with your once-significant other, you will understand missing supportive touch, like a pat on the back, or an outreached hand when they notice you need help down a step.

Today was 2 firsts. I went out onto the porch successfully. I knocked out another goal! Wahoo! I turned my low pain day into a triumph. It was also a day I realized how much I miss supportive touch. I really want to find ways to incorporate touch back into my life, however physically painful, so it isn’t this emotionally painful to be without.

“Touch has a memory.”
― John Keats

Exposing Myself…

You read my blog. And you might read my tweets. You might even know me on facebook or in a support group. But, chances are, you probably don’t know what has been going on in my life this past year. For the next month, I’m going to crack the lid off of my mess. For better or worse…

That last line is ironic for more than one reason.

My husband of 14 years divorced me just last month. And, my sister is about to get married this month. Oh, how the universe laughs at us!

What else? You probably know that I have had chronic pain for the last 11 years, and then 4, going on 5 years ago, I became bedbound due to a failed procedure causing several other chronic illnesses. I’ve had to fight for my life, my pain has been…I can’t find an adjective to describe this pain…and the illness I experience is like every part of my body is at war with itself.

What’s new with my health? I am in home physical therapy, I’ve hired a home care professional, and I believe I am beginning on a slow, steep path to “recovery.”

I haven’t been physically able to tolerate more than whispering sound and very low light for years, nor have I been able to walk outside, walk unassisted, sit upright, or stand up completely without passing out, but I am planning on attending my sister’s wedding ceremony at the end of the month!

Yes, please take that in.

This will be the first time I have left the house, except for being taken to the doctor or emergency hospital visits in over 4 years…and I will be my sister’s maid of honor. It’s huge, and it has been an amazing motivation for me. Now that the day is getting so close, I admit, my determination and excitement is wavering as reality is sinking in.

As I prepare for the coming wedding: mentally, physically, and emotionally, I will also be dipping my baby toe into the divorce, my loss, the transition, and possibly, at times, wholly plunging into those bubbling emotional waters- once I start writing, who knows what will happen!

This has never been a journal-type blog, but for at least this month, I am going there. You are invited, if you want to come with.

New page, DisabledandDivorced just launched.