I know it’s far past my bedtime, but I feel the need to write because if I don’t get some thoughts OUT OF MY HEAD I think I might never sleep again…forever and ever and ever. Ok, so that might be a bit of hyperbole. You get my point. I can’t sleep.
The most challenging thoughts to put to bed tonight deal with commitment and conviction.
I’ve been online, reading about others who have CRPS/RSD, chatting in Facebook support groups and the like. I’m trying to get a picture of what someone with my level of RSD may expect for prognosis in, say, the next 5 to 10 years. I know there’s no magic formula; I’d just like to have a general idea. There’s a HUGE difference between being bedridden, being mobile with a wheelchair, and walking, much less running. So, where do these folks, a few years down the road, fall along that spectrum of ability/disability? Where do they end up along the even broader spectrum of mental health?
Thus far, most of my doctors seem to agree that the patients they’ve had who had RSD/CRPS to the degree I do end up with spread and it just goes downhill from here. My PM, Dr. Z, encouraged me to become physically active again with my wheelchair racing, aqua therapy and such; non-contact sports which are generally RSD-friendly. We haven’t really talked “prognosis” yet, however. I wasn’t quite ready for it last time, and since we had a bunch of treatments to try, I decided I’d start there and hope for improvement. Now it’s looking like that “improvement” in symptoms I was hoping for isn’t going to be so easily obtained and the fight is continuing into the next round.
There are several fears I’ve been batting around. One is the fear of losing more of my identity to this disease. After all, the last few years of my life have been strictly devoted to fighting my list of other diseases. It’s a consuming fight, and it seems to take over my life at times, which I hate. Then I had a breakthrough for a few months where I was improving in several areas of health and I enjoyed learning more about things, non-health-related things, that I enjoyed or disliked. I got to enjoy other people’s company more and do more both around my house and at church. Still had weeks of dreadful exhaustion but they were fewer and I found ways to work around it. This CRPS/RSD monster requires at least as much, if not much more, dedication than my other diseases have required for me to get a grapple on it.
Do I really want to do all the hard work to manage and hopefully forestall the spread of this disease?
Even if that “really hard work” is REALLY REALLY HARD and makes me exhausted 100% of the time, brings even more pain, saps away my social life (and likely my ability to talk about anything interesting that’s not health-related), takes all the money I have and then a bit more, and basically means I don’t have time or energy to put towards the things I value (helping others, creative endeavors…)?
And here I come back to the question of PROGNOSIS. I’m weighing the costs versus benefits, the risks versus hopes for relief. What will happen if I DON’T do the hard work and I give in to…well, I wouldn’t call it laziness. Perhaps “apathy”? I wouldn’t consider anyone who doesn’t do very painful exercises day in and day out for several hours per day because they have CRPS “lazy”. I mean this is some tough stuff, folks! Emotional burnout, understandable when you’re constantly fighting chronic pain and its identity-stealing powers, can leave us in a state of “apathy” or feeling like there’s really nothing we actually CAN do ourselves to improve our situation; that feeling of resignation and hopelessness. Modern healthcare (if I dare call it that) doesn’t encourage patients to find ways to manage such conditions on their own; it doesn’t empower patients; it just makes them feel like they must rely on doctors with pads of Rx paper and pens supplied by drug reps to have any hope of relief or cure. So it’s really no surprise that so many CRPS patients feel like they can’t do it on their own.
Some patients are even told by doctors that they shouldn’t do anything that causes more pain! This is naturally a self-back-stabbing statement for a doctor to make, given that his/her treatments for RSD/CRPS and many other conditions will cause pain, but the same doctor will judge these treatments as necessary because they know a limited amount of pain may produce a positive outcome. Just because the needle prick hurts, most people don’t choose not to vaccinate their children against terrible diseases. (I’m making no points for or against vaccination as I have many questions about it myself.) I didn’t decide not to have a nerve block procedure just because it would hurt – it was for a greater good; the hope of having relief from a worse type of pain. Physical Therapy and Occupational Therapy, and a whole mess of other therapies out there, are going to have some pain involved, but in the end that pain may lead to a brighter future of increased independence, function, and reduced pain and disability. How these doctors get away with pulling this “don’t do it if it causes you any pain” out of their….pocket protectors….I have no idea.
In my communications with other CRPSers from several online communities, I’m finding a general trend that suggests those who do not exercise or desensitize become more and more disabled, sometimes rather quickly, habitually hopping on the couch rather than the treadmill. Most of these folks have tried the most aggressive medical modalities for treatment including spinal cord stimulators, pain pumps for morphine, and they have a list of medications they take daily that’s about as long as my arm. Perhaps it is another outpouring of God’s supernatural grace that I do not have available to me such invasive medical treatments to rely on.
What I do have available to me is good, honest hard work. Physical exercise, desensitization, exercise, and more desensitization. I have experience from years of fighting chronic pain and illness, so I know many of these ropes like the back of my hand, and I have the medical knowledge from OT school to read wordy medical journals and understand most of what they’re saying, and to value my independence and all the hard work required to keep it (which I believe is worth it when I recall my past patients and how hard they too worked to gain and maintain their independence). God’s blessed and cursed me with an undeniably strong will. I also have available to me the grace and empowerment of God which will meet my needs. That right there provides me with an infinitely greater equipping and stack of resources (God owns the cattle on a thousand hills) than I believe most patients will ever have at their disposal.
I wrote about “Mind Over Body?” a few weeks ago, noting how many RSD patients seemed to have outcomes they judged as positive when they put all their resources to work on fighting. It did require EVERYTHING they had, but they did it anyhow.
If it turns out to be true that the only way I can stave off further disability is through radical commitment to hard work and lifestyle changes (and I may not know whether this is the case until I get better or worse…and I actually may never know for sure since RSD has a mind of its own regardless what ones does to tame it), I think I’d rather go down in flames (get it?) while fighting than to go down in flames while wasting away on the couch in apathy and embracing that terrible feeling of uselessness. The later just isn’t the “me” I know Me to be!
How long will it take me to get it together, to develop the backbone of conviction to make all these radical changes in my life despite the cost? Will I be as committed as I hope to be? I don’t know yet. Still working it out. I’m happy that I’m now able to talk about it, however, because a few weeks ago I was just so tied up in the goal making I couldn’t even have set 1/2 of these thoughts to words.
We call ourselves CRPS Warriors. So, I’m choosing to make war with everything I’ve got.
I will go down with this ship
And I won’t put my hands up and surrender
There will be no white flag above my door
I’m a FIGHTER and always will be
(Adapted version of Dido’s “White Flag” lyrics)
Tomorrow I have the low dose ketamine nasal spray trial. Hoping for relief. A bit scared of side effects but trying to push that out of my mind so I can move forward. If my doctor has time for a few questions, I’ll try to squeeze in my question about prognosis and what’s really required for someone like me to manage this and keep it from spreading as much as possible.
Pray for me!