Pain, Scleroderma and Activity

This has to be a quick one today, I have an infusion.

Last night, I had a great Krav Maga class.  I felt very good, but I forget sometimes, that I maintain a regular level of pain.  We’ve all been at the doctor’s office and asked to rate our pain.  My reply is usually, ” 2, but nothing out of the ordinary.”

I don’t quite understand the whole pain scale thing.  I can maintain a conversation while  tears pour out of my eyes.  It may be a learned response or capability because pain is such a part of my life.  I still “mope” about it sometimes and I still have days where I am too angry about my hands to do anything but lay on the couch.

That I am able to do things like yoga and Krav Maga may be rare, but I talk about it because it can be done.  My hands hurt constantly.  There are days the pain is mild and days the pain is worthy of a few choice words and some Vicodin.  I don’t share this with people in my day to day life because it’s not that it’s a non-issue, it’s that I have accepted this as part of stuff that just “is”.  It’s going to exist no matter how much I talk about it.  It’s not going away.  I want it to, but it’s not.  And yes, I ignore suggestion to use things like Dragon Speak.  It’s a great program, but it messes with my thinking.  Probably my own rational form of denial to make my life easier, but I never claim perfection in dealing with this stuff.  I just post what works for me and hope that it helps someone else, in some way, of makes a reader laugh.

I’ll try to be brief with my point, and I hope you will ask questions if I am unclear or if I may have tried something I haven’t mentioned, please ask.  My point is, I’m in pain.  I feel better when I move.  I have found a way to move with my pain, but focus on my activity.  The pain comes up, but in my mind I ask myself, “Is this pain present because I am doing something new that is harmful? Or, is it my normal?”  If it’s my normal, I have my own way of focusing on the task.  If it’s there because I am doing something that creates damage or harms me, even though it may be a regular non-painful task for someone else, I find my own way to complete the task or stop doing it and ask for help.  When I do activities like yoga and Krav Maga, I work with people who are trained to show me ways to adapt.  Ways that I can do an activity and achieve an objective without hurting myself.

So, if you look at your hands in the mirror and find yourself surprised by how messed up they look, like I do every day; don’t forget to finish that thought with, “I’m still here and I can still do things.”  Everyone’s experience with loss is different.  Where I am was not an easy place to get to.  I am fortunate enough to have great mental health care from the Veteran’s Healthcare system.  I hope someday everyone will have access to the great healthcare that I do.  I write because I want people to know it exists.  It was an uphill battle for me to get it and I want others to get it without the fight.  Access to healthcare is part of the big picture of surviving the chronic illness fight.  Staying active is a personal fight but it can be done.

Okay, I hope that made some sense.  I need to get going.  I want to explain more, but this will take some time and editing so please continue the conversation with some questions or comments.  Staying active while in pain isn’t easy.  pain meds help, but we can’t be on them all the time and at some point I accepted that being in pain is just a part of my life.  If you have so something that helps you “live with your pain”, please leave it in the comment section.  And if you would like to tell me that this was not helpful, I want to know that too.  Thanks for reading.

 

2 Comments

  1. Comment by Jade:

    A few years and before my diagnosis I went to an aerobics class with a friend and was embarrassed that I didn’t have the endurance of the regulars. You could tell who knew the moves and easily kept at it for an hour. I wasn’t one of them and I didn’t have the motivation to keep at it and come back. I think it’s awesome that you’ve found a way to make yoga and Krav Maga work for you because there’s always a million reasons not to exercise. You show your strength that you are able to find your motivation and do something so good for yourself.

  2. Comment by Karen:

    Thanks. I flop around in yoga classes like a fish out of water. Once I stopped worrying about how I looked compared to others in my class, it became easy. It’s not just about appearance. I have a hard time keeping up. I fall behind in the running part of Krav Maga and I have to ask for help to hold pads for other students to punch or kick. I constantly remind myself during anything I participate in that it’s not about how I do compared to other participants. It’s about how I am doing and what I am capable of. I share this because I struggle with this all the time. There’s no moment of clarity and all is fixed, this conversation happens in my head every time I do something active. The “trick” for me is to keep going even though I’m “miles” behind the rest of the class in my ability. And to ignore my little voice that says, “You cam’t do that.” Yeah I can’t do downward dog like my classmates, I can do it my way.