chronic illness · chronic pain · crps · disability · ketamine · lyme · writings

being patient with my pain

It's hard and frustrating when your chronic pain moves at a glacial pace. This is what I am doing to accept my pain where it's at and not lose sight of the changes that are taking place while I do ketamine infusions for my crps/lyme pain.

Hey friends.

If you follow me on instagram, fb, or have been reading my blog in the past month you may know that my 2nd ketamine infusion was VERY different than my 1rst ketamine infusion both in my experience at the hospital AND afterwards.

I am still struggling with an immense amount of pain all day every day. I am still using my wheelchair to get around. I am still not allowed to drive. Blah blah blah.

I am almost a month and a half out from my 2nd one and overall my improvement from the infusion has been much smaller compared to the first.

I definitely had MUCH more relief in the weeks after my 1rst infusion. I was able to leave my house more than once a week, I was down to taking pain meds once a day (which is HUGE for me) and was starting to relearn how to walk in PT. I was even able to go see the Rupaul’s Drag Race Battle of the Seasons with my best friends!!!

rupaulsdragracefriends
truly one of the best days of 2016. Yay for drag queens! Yay for best friends! Yay for makeup!
feelinghotinmywheelchair
you would never know from this photo that I had been puking for an hour straight during our drive to get to the venue. THAT is the power of makeup haha!

After the 2nd infusion, I had to stop PT for almost a month because I went into a 3 week awful flare up where I couldn’t leave my house or wear shoes AGAIN for 2317439103th time. When I did restart PT I dealt with residual flareups afterwards, much moreso than before the 2nd infusion. My pain med usage went back up to 2x a day to deal with the pain and I also went back to not sleeping 3-4 days a week because my nerve pain would keep me up all night long.

Its frustrating to be where I am at mostly because I really thought I would be MUCH farther along after my 2nd infusion.

I had this hope in my head that I would be walking without any mobility aides by my birthday, July 18th.

I have been fantasizing about going out to dinner and walking BY MYSELF into the restaurant on the day I turn 33. This sounds so small but this is something I haven’t done in over a year. I have not walked in public since late April of 2015 and even then I wasn’t walking normally…so I guess I should say I have not walked normally in public since the morning of Monday February 5, 2015. That’s a long time friends.

I have accepted that unless some crazy magic happens in the next few days I will be using my wheelchair and walker on my birthday.

It is what it is.

This will be the 2nd birthday I spend in my wheelchair/not walking normally. I know it could be SO much worse. I recognize that and yet still some days I just feel very frustrated.

It still is hard to not know exactly why the first infusion worked so much better than the second. Theres just so much about ketamine we don’t know and my case is more complex because of having Lyme simultaneously with the CRPS for many years.

I know I have to be patient.

I have to accept that this is where my body is. I have to accept that my nervous system and brain are trying to catch up but at the same time my nervous system and brain have been caught in a pain biofeedback loop for almost 5 years. That’s a long time for wrong signals to fire and fire and fire. Add in all the small fiber and large fiber nerve damage from the Lyme on top of the CRPS and stuff is just chaotic and messy.

Chaos is my body’s status quo.

Therefore I know I have to understand that it’s going to take awhile for my body to hear ME through the chaos and understand that “Ohhhh we don’t need to fire these crazy signals anymore. OKKKKKK”

I don’t want to sound all doom and gloom. I had a lovely day and a half  Father’s Day weekend where I was able to walk almost normally (video), use my wheelchair significantly less, and even stand under a tree for 10 minutes to help my mom’s elderly cat who got stuck up there.

crps, rsd, crsp disabled, complex regional pain syndrome, crps wheelchair, crps pain, rsd pain.
It is uncomfortable for me to post this because my body image issues tell me I look chubby/weird and my face is stupid…BUT that aside, I am STANDING both feet on the ground!!!! This NEVER happens!

It was really special to hug my parents standing up. It sounds kind of funny but my whole world for over a year my life has mostly been on a sitting level.

I was hoping that many more days similar to those would follow but that hasn’t happened.

I can say though that my foot is significantly less purple and swollen. At the beginning of the year my left foot was HUGE, it didn’t fit into most of my shoes. It is now almost regular sized and not the color of an eggplant, it generally just looks more red now.

beforeafterketaineinfusioncrps

So that has to mean something is working right?

Right.

I am working hard in PT since that is a big part of how I will get out of the wheelchair and also how I will remind my brain it needs to “stop the chaos”. I knew PT would be hard and painful but I really had no idea how hard it would be to relearn how to walk. Good god it is hard.

crps, rsd, pool pt, crps disabled, wheelchair, crps pain, nerve pain,

It has been incredibly humbling as someone who for most of my life has had a body that worked exactly as it was supposed to.

Last February after my CRPS went from moderate to severe I developed a “weird” way of walking/gimping when I wasnt in the wheelchair. The original running injury in 2011 that precipitated my CRPS was damage to a nerve that runs under my foot’s arch so my CRPS makes the bottom of my left foot EXCRUCIATING and because I have nerve damage in both feet and legs from the Lyme, the bottom of my right foot hurts almost as much. So I began walking on my heel on my left side while shuffling with my right foot with most of the weight on the front of my foot. My gait is completely off and to complicate things I would hunch over to both “protect myself” and to steady myself since neither foot is really absorbing all the weight they are supposed to.

This video gives you a better idea of how I move my body when not in my wheelchair.
Walking in that weird way for over a year has done more damage than I realized it could, mainly in that my feet are SUPER TIGHT because they never fully move through normal walking motions and walking normally when one’s foot muscles are so tight REALLY HURTS. Add in the other awful insane nerve pain from the CRPS and nerve damage and sometimes tears just roll down my face as I try to walk up and down the pool.
Its funny that unless I look down at what I am doing my left foot still pulls away because my brain and body are SO convinced the bottom of my foot shouldn’t ever touch the ground.

I know I will get there.

I know in my frustration its easy to lose sight of what I CAN achieve. I know because I am still in such INTENSE pain 24/7 I don’t always notice small changes that are happening. I am making a commitment to myself here to do the following:

  1. When my pain is high, try to think of one thing I CAN do be it do the dishes, take a shower, fold some clothes etc. Doing something rather than just laying on the couch or the bed allows me to feel proud of myself.
  2. When my pain is high, take notice of what things have changed in the past few months: I can shave my legs occasionally, I use my walker more, I cook dinner a few times a week.
  3. When my pain is high, look at what I am narrative I am telling myself and try to change it. Instead of saying “Oh you are never going to get better” say “Well you are doing x and y and z which you didn’t do a few months ago…so that’s a sign that things are changing.”
  4. When my pain is high, I shouldn’t compare myself to others. Its easy to get caught up in comparing myself to others who have the same illnesses as I do and putting myself down that I am not as far along as they are. Instead I need to remember all bodies are different even when they have the same disorders and diseases. I need to not beat myself up about how slowly my PT is going because I have been in a wheelchair for a long time and this isn’t a race.
  5. When my pain is high, I need to find something to take my mind off of it. Meditate, write, color, read, knit, whatever. Don’t focus on it. Don’t sit in my pain and soak it in.
  6. When my pain is high, I need to reach out and give to others. Pain makes us self centered and that makes me super uncomfortable. I have begun to try to comment on many blogs and instagrams and lend a supportive ear and imaginary shoulder to those who need it. I have a very exciting thing I am about to embark on that I will be sharing about in a few weeks!

It is frustrating and hard when our bodies and our pain don’t move at the pace we want. That being said I don’t want to get stuck in that frustration and lose sight of what I CAN do and what changes are taking place.

Every day I am a little closer.

fathersday

xogen

4 thoughts on “being patient with my pain

  1. Love your perspective. Positive yet realistic and hopeful. Being patient with our bodies is so hard. These little moments have been big & they are significant to your story! Happy Almost Birthday!!!❤️

    1. Thank YOU for reading! Its hard to be positive some days as Im sure you know but it is worth the effort. I would rather strive to be finding the positive stuff than down in the dumps and always finding the negative. Hope today is going wonderful for you!

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