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Monday, December 12, 2016

Ending an 8/10 fibro pain flare

If I include yesterday: I endured a pain flare for 11 days in a gradual manner, due to the current fiscal policy of my household. If J doesn't agree with my going to my pain doc at Novena — to get an IV jab to end a pain flare as soon as possible — it means I cannot get it even I use my bank account for it. It costs around $400 for four meds in total: Fentanyl, morphine, paracoxib; and Zofran to offset the headaches and nausea that are side effects of these analgesic meds.

I was advised instead to rest, because I didn't need to rush anywhere, not even to the toilet. I did stay in bed for most of the 11 days. No, I did not get a urinary infection.

The only other thing I was advised by the CGH pain doc when a situation like this happens, was to just take an extra dose of oral oxycodone (5mg): out of the same prescribed number of capsules. Which means I would have to skip doses along the way to make up for the extras I took. Because of the severity of the pain I had, it is not a sustainable option anymore; I simply cannot make up for all the extras I had to take, to get by the past week and a half. No, the public hospital folks could not offer me any injectible pain relief options. I will try to bring forward my next appointment with the public healthcare doctor if possible. If not, I am doomed to go back to the private healthcare sector for help that government-subsidised hospitals will not offer.

The last time I had this same long, drawn-out pain flare, was for 10 days when I was still in CGH. My pain management team of nurses could really emphathise with how deep the pain went, but could only tell me to rest and take my oral meds, do deep breathing — that's all. It was an exhausting ordeal, even when at that time I had nurses to help me. This time I was on my own in the weekday mornings and afternoons.

Here is how I coped the past one and a half weeks. Unyielding pain, that ran up to even 9/10 at one point, made me physically fatigued. I slept a lot, unrefreshing sleep, but the inactivity gave me relief. The other way I coped was with essential oils, which cost by approximation about half the price of the IV injection I wanted to have. $200ish dollars on essential oils is nothing to sniff at, pardon the pun. But I had no other choice. On my pain charts it proved to be tied 50-50 with inactivity as a mode of pain relief. I used frankincense, copaiba, and Idaho balsam fir on acupressure points on my earlobes, palm and feet. The effects were significant but did not last long, so I had to keep re-applying them. 
Data from my Manage Your Pain Lite app

What frustrates me most about this gradual method of getting out of a pain flare, is that my muscles deconditioned for 11 days, undoing much of the exercises and occupational activities I burden myself with every day. The time-frame of this pain flare also meant that I had to skip my weekly physiotherapy at the hospital.

The concept of an injectible pain relief solution is so that a patient can "break out of a pain cycle" and not keep on taking more and more oral medication that wouldn't help much. After this breakout we can go back to simply taking our baseline medications, instead of an increased level of them to the point of having side effects like headaches and nausea, (which I have already been experiencing since yesterday). I also now find it even more difficult to try and reduce my pain medication as far as possible, which is the general plan for long-term pain management.

Furthermore, the aptitude of my private practice pain doctor meant that he can quickly and deftly inject the meds intravenously instead of via an intramuscular route (IV instead of IM) — without a need for a drip set-up, or IV catheter. It is fast, quick, and utilises the least possible resources and time.

At the heart of many chronically ill folks like me, we just want to be productive. This kind of non-breakthrough pain relief is inherently discouraging. Before this happened, I had intentions of changing my exercise regimen to include more core exercises and step up my rate of recovery. My physiotherapist was aiming for exercises to improve my balance. 

Right now I am also experiencing fatigue and light sensitivity. I need some more no-stimuli naps, and take it easy today, even though I can safely say that the pain flare is more or less over. It is always prudent to plus one more day of rest and inactivity before slowly pacing yourself back to a state of normal.

Today, Sayang is parked on me; being the sensible and sensitive one in our brood, she knows I need to slowly get myself to normal. She meowed at me when she saw me scrubbing the toilet earlier, as if in scolding. She got frustrated when I kept getting up and down from bed, and I had to in some way go back to a state of rest that she felt I should be in before she would give me her attention.

Sayang being a lap-park cat

In psychodynamic therapy I have weekly, we examine a lot of links between my thoughts, feelings and actions of today, and my emotionally traumatic childhood. Similarly, something my first psychiatrist told me, resonates with how I feel about this whole ordeal. Which is that when I was five years old, I could only have my mother's attention when I fell sick and she had to stay home to take care of me. Ties between my sicknesses and the love I wanted, formed a condition right there, because after that one incident, my mom never gave me attention like that ever again in my childhood. I wanted it then, and I want it now, My mother was willing to pay for my pain jab last week when I had a day the pain hit 9/10. But $400 is $1,200 to them and a definite dent in their retirement funds, so I didn't want to accept.

Conversely, as I now begin to realise, is that every time the government healthcare system fails me, I feel it is because I am not worthy of help. J felt I had nowhere to go in a hurry, so I could wait out the 8/10 pain flare instead of getting a jab. This premise is in fact a low blow, because it meant that not only was the system failing me, my other half also felt I was not worthy of help as I deemed fit. I was doing nothing, meaning I was in no way of help to society, because full-time recovery is not an economically productive activity.

I am now already used to feeling like this. I will still stand strong in this emotionally-wrought chronic illness ordeal.

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