Infusing hope (15.12.2018)
Yesterday I had another in-hospital treatment; a full-body infusion of an anaesthetic medication. It was my fourth infusion; the last of a series of three, over a 3-month period.
The first one had been one about 6 months ago, with a different medication – that unexpectedly made the symptoms of my rare disease worse. So my specialist medical team waited a while, before suggesting that we try again!
Each of these last 3 infusions has temporarily calmed the neuropathic (nerve) pain that plagues patients with Complex Regional Pain Syndrome (CRPS). Or Reflex Sympathetic Dystrophy (RSD); the old name for this disease, that many physicians still use.
The hope was that each infusion, in this series, would lower my level of neuropathic pain; for the future. That when the anaesthetic wore off, this type of pain wouldn’t be as bad as it had been before the treatment. That it wouldn’t go back to the previous level.
So far that hasn’t happened. But just having some of the disease pain removed, even temporarily, has been fantastic. It’s a double-edged sword, though…
As wonderful as it is, not to feel the excruciating neuropathic pain for a few days or weeks, it has gradually come back after each infusion.
And that’s heartbreaking, hope-crushing; to have that pain gone, and then have it come back again… it sometimes seems worse than living with the uninterrupted, and constant, pain.
This photo was taken soon after the infusion, while I was still feeling dizzy and “out of it”. The nurse had removed all the electrodes to monitor my heart, and had disconnected me from all the other machines.
My nerve pain was gone, but I was trying very hard not to get my hopes up too high. Not to have an expectation that this pain wouldn’t come back.
That’s what is going through my mind, in this photo: “Don’t hope!” Because if – or when – this pain does come back, as bad as it was, the disappointment will be crushing. Struggling to rein in my usual optimistic outlook, to temper it.
But still keeping a bit, just a sliver, of hope that this time the pain won’t come back.
CRPS is rated, on the validated McGill Pain Index (MPI), as about 3 times more painful than this fracture. I know this is true, because that’s my broken arm in this photo!
While fracture pain is supposed to go away, CRPS pain doesn’t. Instead it gets worse, and other symptoms show up. So not only do I have 7 different types of pain from CRPS, I also have problems with my concentration or focus (e.g. reading), joints, skin, tremors, and more.
The disease itself morphs as well; it changes, goes through different phases. With new symptoms, even after more than 2 years with the disease. That’s where I am now; and having to force myself to try not to hope…