Looking back on last week, what a rollercoaster that was, pain attacks were already at peak level for some weeks, add to that the pain clinic treatment, some bad side-effects to it and a rollercoaster of emotions and you have the perfect cocktail that would knock out any normal sane person…whish it had, than at least I would have slept and could have recharged some batteries…How did it all start, well, long ago of course, with the scoliosis, the fusion, the bad luck of having an infection, six more surgeries, since then chronic and acute pain attacks linked to back and radiating pains and a whole truck load of other severe and some less severe conditions as a result of the back issue, you name it, I have it!
However, that is not what had me upset on the emotional level last week…let me explain…A random conversation, about ten years ago in pain clinic: “if we can take away 10% of your pain, that is already a success, that’s why we do it”. Last week’s conversation, when having my treatment (three times a year): “if the treatment is only giving you relief 2 or 3 months out of four ( in my book that is a lot more than 10% and it is what keeps me going) maybe we should stop it, many of my colleagues wouldn’t treat you anymore.” I had discussed this with her many times, the final month the effect is declining raplidly, facing more attacks, elevating the oral pain meds, more stomach problems, etc but they never search for an alternative or solution on how to cope with that last month…so, again, I ask her what the alternative is, she replies “I don’t have any’ and again points out that it would be more advisable to stop!?! In who’s favor is that? Certainly not in mine, I accept two or three months out of four with open arms. That doesn’t mean I am pain-free in those months, far from it, but it is somehow manageable…
I started crying, I have never felt that alone, that angry, so helpless in my whole life…there was no further communication with doctor, she left…I didn’t see or hear her anymore, thank God for the two caring and understanding nurses. I got a report home for my general physician in which doctor wrote she discussed psychological pain coping sessions with me!?! First of all she didn’t discuss anything with me as she just left the treatment room without saying another word to me or goodbye or best of luck or whatever, and secondly, well, I have been coping with pain since 13 years old, that is 32 years now, think I pretty much know how it works and if anyone can give sessions I can relate and understand so much better therefore stand in front of the classroom myself!
It’s just a ride, it’s just a ride
No need to run, no need to hide
It’ll take you round and round
Sometimes you’re up
Sometimes you’re down
(lyrics ‘It’s just a ride (Jem)
I try not to hide away in a corner, even in my pain filled days, I never stay in bed, try to keep my head up, I read, blog, enjoy nature, photograph, dream, have a caring husband and son, family and friends, what I still haven’t learnt coping with is having to defend myself to my doctor who is supposed to understand, to help, to listen, to look for alternatives, to transfer me to a colleague if she doesn’t know the answer, not write me off!
The pain treatment when already having pains at peak level is no fun and I know from experience I can expect a major attack that same evening and night, however in general, when I can manage to catch just a little sleep, I can recharge my batteries and bit by bit there’s progress soon…well that was definitely not the case last week…have only had one or two other pain attacks falling under the category ‘mother of all attacks’ where husband had to rush me to er and this time was pretty close too. Had doctor on call over twice and finally after two days, finally, finally there was this sparkle of light and hope again! Am better now, chronic pain stays however, can deal with that, the acute attacks are gone for the moment, as they appear irregular, unfortunately, but I still feel tired and mentally a bit exhausted, though force myself to hold on to all the positive things!
As for the utmost patient-unfriendly treatment, have already made an appointment in another nearby hospital to see if they can take over my case and treatments, hope to be able to close that door and chapter soon and hopefully onwards to an approach where they do listen and are wiling to search for solutions or alternatives!
Sorry, hope I didn’t bore anyone, this is part of me too and can’t all be posts on yummy foods and relaxing trips, but hang in there, am resting, nose in the garden and have my batteries in the charger and feet up rest of this week week as a trip planned to The Hague next weekend!