Don’t you breakdown…

Posted on by the-back-road-chronicles

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)

forget me not
Little ‘Forget me not’ treasures in the garden 

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!

Ingrid

xxx

 

Matters of the heart

Posted on by the-back-road-chronicles

This week, two days in a row now, keeing an empty belly for some blood and health checks…not my thing…I am the kind of the person only mentally and physically functioning on a breakfast: a little bowl of oatmeal, some fruit, some tea or juice and my pain medication, that get’s me started!

The blood check was done yesterday, nothing painful there, though you never know in advance with my veins. They are very tiny, invisible and jump away when a needle gets close, a nurse’s nightmare!

The examination scheduled this afternoon then again is not my idea of fun. They need to have a closer look at the mitral heart valve as there appears to be a leak. I already had a normal echo last week, that’s how the valve problems and leak were discovered, but to determine the severeness they need to examine through the esophagus to have a better view on the heart, valves, and the veins leaving. My cardiologist explained the procedure could be somewhat compared to a gastroscopy, which I had earlier this year,and not a big fan by the way, but this should be somewhat more comfortable as they do not have to reach down as far as to the stomach…comfortable is not exactly the word I associate with any of these examinations, it always seems so much easier sitting on the other side of the room and wearing that white coat!

#garden #frost
early morning frost in the garden to warm the hart

I initially went to see the cardiologist as lately I start to experience more and more shortness of breath in daily activities, which are already limited in my case due to my back and chronic pain condition, by activities I just mean doing stairs, riding the bike, lately they all left me gasping for air as if I had just finished a one hour extensive workout! Besides the valve leak some other issues were discovered too, when in activity modus, my heart rate goes sky high too fast, that could be just a separate thing and no link to the valve issue but depending on how great the leak is and how the valve exactly behaves when in higher activity, there might be a link, so at this point this seems like the most urgent thing to further examine, so I just follow and listen…

…for when it comes to matters of the heart, I still want mine to continue to beat normal, feel, love, explore, wonder for a very very long time!

‘Health is the greatest wealth’  (Vergilius)

Ingrid

Xxx

Namasté…yay or nay? First yoga impressions…

Posted on by the-back-road-chronicles

Namasté, aaah, if only I had nature’s souplesse and way to adapt to any given situation!
The power to re-energise en to be a able to shut myself and especially my mind down whenever I feel the need to.

yoga

I had my very first yoga session yesterday but deliberately waited until today to write down any ‘yay or nay’ experience…surely giving it some time I would be more able to evaluate how I would feel…wrecked, in pain or just the opposite, more energetic or more at inner peace?

So, let’s flash back to yesterday and give you some background info…I have been playing with the idea to give yoga a try for some months now. With the start of the new school year, so did many activities in our local sports centre. I did some research and mailed the yoga institution for more info especially regarding my medical history and whether yoga would be a great idea or not. I have a back condition called scoliosis, have had multiple surgeries, major part of my spine is fixated and I am in daily pain, backpain, as well as radiating pains. More info on that on one of the earlier posts here Crash and reboot, the chronic back pain tales
As it turned out, next class was scheduled the next afternoon and I was welcome to join in and just give it a try.

I must admit I was not sure what to expect, my knowledge of yoga was what I had seen on tv or read in magazines and it all looked very complicated and technical, that is in my particular case as I am on sports level and more general any movements level rather limited!

I explained the situation to the teacher and found myself a spot front row next to two lovely ladies who made me feel very welcome and told me to just take it slow, not to worry if things seemed difficult the first time and not to over-do. I felt confident to start…and then we had to do the so-called ‘sun greeting’ and I just thought: “What am I doing here?!” Is that to scare off any newcomers or is it just me being not that flexible? Greeting one, I was still ignorant of what was coming…my fellow yogi were already at sun greeting three when I was still trying to figure out all the different positions, realising technically I couldn’t do them all, so I just sat down and felt really really stupid, had that “What was I thinking” moment while I was in a ‘sitting bear’ pose…does that one exist?

But hey, I’m no quitter and I must admit of the entire lesson, that lasted one hour and adding twenty minutes of relaxation, those first minutes were the most challenging. Sure, other poses came along were it seemed my two lovely neighbour ladies (of whom I if I would have to guess their age would say somewhere between seventy and eighty) ignored all laws of gravity: their legs and body high up with the candle pose and switching between different poses with a flexibility and smoothness I could not help admire and be jealous of!

Namasté…my soul honors your soul.  I honor the place in you where the entire universe resides.  I honor the light, love, truth, beauty and peace within you, because it is also within me.  In sharing these things we are united, we are the same, we are one.

During class the teacher helped me out or handed me some alternatives so in an overall sense this try-out got a ‘yay’ and yes I do feel a bit more pain today but not in a bad way.
I didn’t put too much pressure on my body, after all these years I tend to know my limits, but even more, there was no need…everybody just did the poses on their own pace and level. Aside from the sun-greeting I must admit the relaxation part turned out rather difficult, curious if after a few weeks or months I can see or feel a change there…

So yes…am gonna give it a try, though there might still be a ‘sitting duck’ or ‘hanging bear’ once in a while!

Ingrid