A long health babble
Posted this in one of my GBS groups and just wanted to save a copy here.
Long post, but in summary~
Does anyone ever feel guilty about trying to recover more?
The big babble~
I keep wavering on this line between 'never stop driving forward/try to recover everything you can' and 'maybe I should stop pushing and be grateful for what I have recovered.'
Having one of those down moments where I worry I am wasting my doctors time.
With the newer opiate laws (in the USA, Texas), I'm running into a situation where I am now getting PT for my arms and hips in areas I was told were recovered as much as possible (at 3 years out) and now 7 years later I am trying for improvement. I started in mid December but that inferno burning pain is there because PT is aggravating my problem areas. I had just gotten to a point where I was going to start stair-stepping down from my opiates and now I have had to amp back up on them to deal with the pain. (It is more that they just knock me out long enough for me to get to sleep past the burning rather than actually stopping it.) I have used Cymbalta in the past and it helped, but the start and ending of it were a bit rough and I don't know if maybe after another month maybe the burning will stop?? So I'm hesitant to try hopping back on it.
Do I give up the PT and aim to drop the opiates or power through the PT, deal with the opiate increase and once/if PT works and I level out again, then try to step down from them?
Blarg, just feeling frustrated and guilty that I feel greedy for trying to always recover more.
I have always been a pretty driven person, not one to throw in the towel and 'settle' so sometimes I need someone else to step in and tell me I need to chill and just enjoy what I have.
It burns tears in my eyes to think of settling but then I feel greedy for trying for more.
2016 was eye opening with the ketamine therapy providing pain relief for the nerve damage left over from GBS. The past 7 year have been more about coping with the pain rather than actively trying methods of rebuilding and additional recovery. I don't want to give up trying to recover more but every damn turn with GBS is always the path of more pain before the gain. Getting sick of that road map but at least now it is becoming something to anticipate.
Just wondering about your thoughts on this... meeting with my pain doc tomorrow afternoon, hope to get some kind of plan in place. I was just really excited to get off the opiates and then PT pulled me into a tailspin with the pain. And I don't want to look like I am just begging for more excuses to stay on the opiates. I worry I just come across looking like I'm begging for meds.
If I went the route of no meds and continuing PT, it would mean giving up my steady work because I would go back to the long sleepless nights and odd living hours. The meds help me balance work (which I LOVE my job and industry), exercise and finally having a social life after 7 years. I don't want to lose that but I want to keep pushing to see if I can get my upper body and hips working better.
We are at a place in our lives we can afford the PT (freaking $214 a session, and I do PT for hips and OT for arms, Andrew aiming to meet once a month.)
If I drop the job, that means less money to afford the PT so that cuts into the whole point of taking time off of work to focus on health.
Yarg, just a lot of different factors at play for the moment... :/