When is too much too much? When do you throw in the towel? Am I being selfish for thinking ‘why don’t you just bundle all this **** and dump it at someone else’s door…not that I wish anyone that much misfortune…
Just indulge me this little intermezzo in self-pity and I’ll be back to my usual smiling and ‘taking it one day at the time’ soon!
Somewhere on this blog you could already read about my health issues…I’m a chronic backpain patient due to severe scoliosis.Crash and reboot, the chronic back pain tales and Don’t you breakdown… I have chronic pains, radiating pains to legs, neck and head and what I call my random pain attacks…the worst…that’s pain on three levels only from one condition and with all this my ‘backpack: this is life, deal with it’ is pretty much full as it is. I know backpacks have those little side pockets and are super flexible…but there’s a weight limit right?!
Three years ago I got tinnitus, not exactly a fun gift, I can assure you, as it affects my sleep a lot, but hey, there are worse things. Two years ago they discovered I had a leaking heart valve. Then last year, and still ongoing, a thyroid condition and nodule came in the picture and since last week there’s a new kid in town: a balance disorder. Had been light-headed for a while but since a few days now I can’t go outside without getting dizzy, nauseous, loosing balance and feeling very insecure. My eyes don’t follow my own movements or environmental movements as rapidly which makes it hard to focus and very exhausting. Even typing gives me headache as the eyes moving from the keyboard to the page gives a blurry and delayed sensation. The London and Malta posts will come with some delays because of this, bare with me…
Already consulted a doctor and there is indeed a disorder on one side of the balance system…however, more tests needed to find out by what it is caused and exactly which part is affected…in the meantime…it’s an unbalanced life and trying to stay on my feet, literally…oh and trying to find ways to pimp that backpack too😉
30 days without complaining…would you be able to do it? And what is considered complaining? Will I have to bite my tongue or think twice before speaking? Will my partner in discussion will roll his or her eyes and dare to bring it to my attention…stop yammering! After those 30 days, will the glass be half full or half empty?
Yesterday, not totally coincidental on Blue Monday, meant the launch here in Belgium of the playful campaign ’30dagenzonderklagen’ meaning for 30 days we will be motivated to look at life through pink coloured glasses.
It appears we love to complain, right?! I guess we Belgians are not alone in the world when it comes to that…we complain about the weather and small things in daily life and of course the bigger issues: health, relationships, work, politics, you name it,…and like all habits, it’s a hard one to break, key is not to look at those bumps in the road or setbacks in a too negative way.
Like the campaigns ’30dayswithoutmeat’ and ’30dayswithoutalcohol’ this one too tries to raise awareness and provides tools to stand in life more optimistically…no worries, it’s all down to earth…for 30 days long coaches and ambassadors from health, sports and cultural sectors guide you through a more positive lifestyle with their daily tips & tricks and missions. At the end of the campaign, just in time for Valentine’s day, you’ll be able to test if you’re truly standing happier in life than when you started…
Is the glass half full or half empty? Well, isn’t there a third option…focussing on what’s in the glass…
Do we really need a campaign or test to learn us to be happier and to complain less? Well, maybe we do, maybe we don’t…biting your tongue when you really have something on your liver isn’t healthy either…isn’t the trick, as it is often, to keep moderation…not to complain ‘too’ much or ‘too’ long? Like I still want to eat steak and drink a glass of wine, just not every day… and I still want a listening ear when I feel the need to share my troubles and just by knowing you listened, I’ll open up my heart for all the good still to come…now isn’t that positive?! See, only two days rolling and it already has an effect😉
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!
Well usually there’s not much point in looking back, with this new year in full swing now, we should look ahead and hope for a year of light, laughter, respect and kindness in the way we live, in the way we treat our planet and the way we treat others. A warm pair of arms like the warmest blanket to comfort us when we need it most, a listening ear to tell our story without being judged, whatever that story may be, as every story is unique and deserves to be told. And maybe, maybe, that story gets a happy ending or closure, just because there was someone to listen or just be there, to help, to not judge, wouldn’t that be great?!
When new replaces old, it’s a strange mixture of hope and melancholy and I allow myself just for once to look back on what the past year has brought us, to me personally, and to our little family, being my husband Bert, son Nick and our stray cat Wiskie, living with us for more than five years now.
The year started off for me personally in January with lots of medical examinations and hospital visits: the ongoing tinnitus, which I am still coping with, sometimes ok to deal with, sometimes a burden, stomach problems and examinations, and no, not as a result of too festive meals… blame it on too many pills for the chronic back pain, but as I can not alter that situation…onwards we go…
February was a month were nothing really happened, that twilight zone, were your heart and the shop windows make you long for Spring but looking outside only brings grey, cold and wind to freeze your brain. That meant seeking refuge inside and luckily had my hands full and mind distracted with the planning of our Summer holiday road trip.
In March we were fortunate to spend a weekend in lovely romantic Bruges, weather wasn’t that great but had a wonderful time exploring tiny streets, new restaurants and coffee houses. Life was wonderful and we were all starting to dream of Spring when time and life were abruptly stopped on the 22nd when our capital and hearts were under brutal attack.
Was counting down in April to have a pain clinic treatment, which meant a lot of ‘bad’ days in that month prior to the treatment and just after, a lot of staying inside, resting and dreaming of better days.
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 It’s just a ride, it’s just a ride Don’t be scared Don’t hide your eyes It may feel so real inside But don’t forget it’s just a ride
(just a ride – Jem)
Early May brought better weather, which my back and joints were extremely thankful for! Lots of things to do in the garden, my head full of plans and ideas, some seaside trips, Spring at it’s best.
June meant tiptoeing through the house with a student hitting the books, or pretending to be…all ended well and finally ready to start that last year of secondary education after holiday break. If not tiptoeing or baking something as a treat for the above one I hit the books myself, tourist guides, websites, whatever I could lay my hands on to prepare ourselves for our upcoming southwest USA trip.
July was all about that big adventure, a three week trip, bringing us from San Francisco to Phoenix with stops in Monterey, Yosemite NP, Mono Lake, Death Valley NP, Las Vegas, Valley of Fire, Zion NP, Bryce NP, Antelope Canyon, Horseshoe Bend and Grand Canyon.
The trip was on all levels wonderful but exhausting, so August meant rest, rest, rest and another pain clinic treatment. With husband back at work and son joining him making some money as a working student the house was empty, leaving me plenty of time to go through and edit the more than 5000 photos we had taken.
September meant back to school for Nick and I started taking yoga classes…still haven’t figured out if it’s my kind of thing considering my back condition and history. A smaller group with more focus on the limitations some people are facing would be more favourable. Have raised the issue with the physiologist of the pain clinic, maybe they are aware of other programs more suitable for me. We celebrated Nick’s 18th birthday, another page turned and new chapters to write.
October and November granted us the most perfect Indian Summer, we did some re-arranging in the garden and had a lovely relaxing Halloween break in Durbuy.
Early December meant another trip to the pain clinic and some unexpected and at first upsetting news after some random cardio tests. Further tests luckily meanwhile showed the problem is existing though minor. Step one, as not completely out of the woods yet, trying to determine the cause and reason why I went to a cardiologist in the first place. However, needed a break of the whole doctors and hospitals world that was becoming weekly business, will deal with that one of these weeks to come!
So here we are, we made a full circle again, from pain clinic to pain clinic, from season to season, from end to beginning.
Let’s start dreaming again and hope this year brings lots of pleasantries on our path, the small ones, the big ones, the unexpected ones, the ones that make our hearts jump, our eyes twinkle and put a smile on our faces!
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!
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!
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.
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!
Making notes for this post I wasn’t even sure if I would ever publish it…it’s not a ‘happy’ topic, but it’s part of who I am, right, so why not?! I promise it will not be a depressive or even too long post!
Just to fill in the blanks for those who do not know me, or those who didn’t know that part of me yet: I have been a chronic back pain sufferer for more than thirty years now after several surgeries between the age of 14 and 19. I take tons of medication daily, have regular treatments in pain clinic and stopped working years ago as physically no longer manageable though I left many tears for giving up my job, and still do.
End of story right, take your meds, physio once in a while, lots of resting, respecting the boundaries…oooh I wish it was that simple!
I have a lot of radiating pains, to my legs, to my arms and neck and sometimes to my head leading to migraine. I call them my ‘attacks’: they vary in severeness and in duration, from a few hours to two days. They come on top of the usual daily pains I have and to which I have grown accustomed. They start at random, not triggered by anything specific, though I should not start vacuum cleaning the whole house😉, I can only do one room, or cleaning windows, etc,…things I have all learnt to work around or find other solutions for.
My days are planned based on how I feel, after doing groceries I rest, I sometimes leave them downstairs to unpack half an hour later because I need to lie down first. When cooking dinner I start my preparation in the afternoon so I can rest before doing the actual cooking, that means if dinner is something more elaborate than just cooking pasta! I split up nearly every activity, so I can rest in between. When having a party or invitation by friends or family we try to avoid two evenings in a row, as I know that is asking for trouble. When I know in advance we go out, the schedule is extra cleared the days in advance and resting is doubled. Luckily I have two lovely, understanding men in my life and here in the house helping me out, my husband and son, I honestly would not know what I would do or who I would be in all this without them! I feel blessed with the lovely friends, family and neighbours stopping by concerned and offering their help, so warms the heart!
Though I have learnt these attacks don’t last, every single time they knock me out big time, it’s not only my body that crashes, it’s a mental thing too and takes time and a lot of inner power to reboot every time again, over and over again. Sometimes I’m lucky and I am only overrun by such an attack once every two weeks, sometimes it’s two in one week!
During those attacks, depending on their severeness, visualisation usually helps me…oooh the beaches I’ve been on, and mountain streams, feet in the splashing water, or recalling happy memories from past holidays…I have a happy song too that goes over and over in my head: Katrina and the Waves’ Walking on Sunshine😀how bizarre is that, but it helps…
The most difficult thing still is to let go: letting go of the plans made for that day or evening, my social world has already been reduced and changed, so I do want to hold on and cherish the people and the things I still have or can do but on the attack days I have no choice: it’s letting go, hoping for better hours, days to come, finding that inner strength to reboot again and focus on the many things I can still enjoy like cooking and baking, reading, gardening, photography, holiday planning and dreaming, making new friends, so once I’m up and running again, well, figuratively, don’t it feel good!