I’m feeling like I’m moving backwards, as though my pain has increased this week and my ability to deal with my numb legs is diminishing. My knees are SO sore (I fell on them in the shower a little over a month ago…) that they scream with every step.
Part of this feeling is due to the fact we’ve reduced my Oxycontin from 30mg to 20mg, so there’s where some of the pain is coming from. But I just can’t shake the feeling that I’m moving backwards.
I need to keep myself in a positive frame of mind; that is vital. But it’s SO damned hard.
I try to think of how far I’ve come, and what a different place I’m in now than I was just six weeks ago. It’s valid and a good point. Then I get up and try to walk to the bathroom and my legs are screaming, my knees feel weak, and I feel almost ready to give up.
Almost.
I know that I’m feeling scared about Andy leaving for 8 days at the end of Feb, but I’m THRILLED that friends will be coming to stay with me. I worry that my pain levels will continue to increase and I will be a burden on our friends who come to baby sit me, but I just have to get over that.
On the HUGE plus side: I took a shower this morning, I ran the water, got into the shower, soaped up and rinsed off and got OUT of the shower. While I was drying my legs were shaking so hard – I just don’t have the stamina that I used to have – but doing stuff like taking a shower on my own is how I WILL create the stamina that I need.
If only it didn’t take so damned long.
I haven’t been thru anything near as tough as what you are still dealing with, but my own medical crap means that frequently after a shower I spit down on the toilet to dry off legs & feet. I have large bath sheet & start by wrapping over me similarly to a shawl to get worst of arms & back quickly then put it down around my waist to sit down. And I don’t have the energy or stamina to handle a shower on a regular basis but am currently home bound so just wait for days when I think I will be able to deal with it. You are right that attitude makes a big difference but some days you need to look at the small little positives in your life to find that rather than looking on where you have come from or where you are now. Please don’t beat yourself up for the days when you focus on how far you have to go or the worries you have, just accept that it is a part of this and that you are looking for positives.
Pain sucks. No two ways about it.
Kudos to you for showering on your own – but might a plastic stool be helpful? Medical supply stores have bathing stools with non-slip feet and seats.
You can do this!!
I freaking love my shower stool. Ever since the flu shot debacle, I’ve really struggled with taking a shower. The stool helps so very much.
It all sucks. It’s like you’ve been put into the machine from The Princess Bride. You just don’t have a Miracle Max to make you a miracle pill.
I am thrilled to hear that you’re improving, even in small ways, with every new post. Woman, you are just a fierce and strong warrior queen. You amaze us all each and every time we hear from you. Keep up the great work. Be patient if you can. Sending a big, huge, pain-free hug.
Love you.
a tiny practical thing that a PT recommended to my mom when she was trying to recover her ability to walk: Write down what you’ve done each day, then never compare today with yesterday, only compare with a week ago (or two weeks, or whatever is needed).
All this very clearly sucks, but from just reading your posts it’s equally clear that you have already come a vast distance. Bravissima!
When anyone of us has one of these incredible “medical adventures” our bodies do their best to heal and regenerate. The rest is another matter. I’m sure there are others here with stories of their own, so I won’t bore you with mine except to tell you that my “after” was surreal. It took the form of anxiety – sort of a feeling of impending doom even when I knew intellectually that I was safe. It’s sort of what I have read of ptsd. I will not honor those letters with capitals because I have no idea what our service men & women who have fought in wars have experienced. I do not think that my experience equals theirs, but I certainly went through weeks of high anxiety which softened over time. It makes one feel very vulnerable and ineffective at self care. Take it easy – do whatever you feel comfortable doing and let the folks who are close by know what’s going on with you. One thing that helped me mentally gain strength was to write it down – just for myself. It’s very personal & private. Just a few words – how you feel at any given time. A journal of your experiences, feelings, thoughts. That helped me slow down & also go forward. That doesn’t sound sensible, but you’ll find your own path through it all. It won’t happen fast or easy. Just take it slow. Baby steps. Your way.
Every fucking step counts, Annie! I know you know this but Ima shout it from the cheap seats. Also, soooo much love to you on every small victory.
Just from your writing, I can see that you are gaining strength. As far as having more pain after reducing your Oxycontin, it’s more than that you are just taking less. When you take opiates, your body’s normal set point changes. It’s not just that you are taking less now, your body is making/absorbing less of its own painkillers, so it’s a double-whammy. But your body will adapt soon.