Time goes by.......and new opportunity....

Its been some time since my last post and as usual nothing has stopped! The world has kept on turning, time has kept ticking past and life has continued!

When was the last time you caught yourself saying something like...."I cant believe where the year has gone", or "is it really nearly Christmas?", "where did the summer go?" As we all do as children, we focus on the next big exciting date and it always seems forever to have to wait! And then as we start to get older time seems to go into fast forward......we've had more experiences, things take no time at all in comparison, we know what to expect, blink and something has been and gone. I keep my diary full of shows, theater,  art galleries, seeing friends, learning new things, reading a good book, because too often I have sat and looked back over the past couple of weeks or months and felt little sense of accomplishment.......sure Ive got up and gone to work! Ive worked hard and made progress on projects  Ive had challenges and made decisions......but its all in a days work right? so what about all the other stuff? if you dont take care it passes you by and nothing has changed at all. All that saving for tomorrow and those odes about never saving for tomorrow what can be done today and all that? When also did you last just look back over your day and feel that you did something really good.......helped someone...that you made the world a better place? gave something of yourself willingly graciously generously? did you have any impact on the world at all in your own way today?

Im pondering this stuff a lot at the moment...I want to start really changing the way I think and do and am. I believe that over the past year I have taken great steps towards that in how i have approached my recovery and dealt with the bones, diagnoses and pain......the outcome......well generally its all very positive. I have defied medicine in so much that im not a total train wreck still, humpty dumpty is definitely back together again, hes been re-plastered, repainted and in full working order in fact! You'd never spot where the cracks and chips were! the bones are getting very slowly but surely stronger........
 Ive mastered the pain management and am now OFFICIALLY PAIN FREE! and Im desperately trying to get my strength and self back to normal so as to get on with all that fun, learning, adventure and craziness that is that way I live!

Have you ever heard the phrase....." you dont need a new year to make a change, all you need is today?"
someone asked me that question recently and I made a decision on the back of it! Im not prepared to see if Im still doing the same thing in 5 years time and dealing with the same stuff, Im actively changing that picture and focused on it happening now! AND its happening!

I have a LOT going on. Im one of those people who probably tends to do change all at once....or sometimes it seems that way anyway. I chuck it all up in the air and wait to see what order it all falls back down and where. That sounds rather drastic I know and of course the project manager plans it into some sort of order, peps me up and gives me a tutting lecture so that I can actually see what will come down in what order, but when I do chang anything in my little world it seems to set off a whole motion of events and changes and always for the better. I was told when I was 12 years old that its not worth moaning about missing out on opportunity, you let them slide past and didnt grab them if you are.....its about being open enough to recognize them as they shimmy past and grabbing them.....and shaping them. Some might say that illness can do that for you if you are open to it. It changes your perspective, it allows you to change your approach, your attitude and if you allow it to, you can change anything you want; you just have to do it! If you can beat an illness or disease and the circumstances that they come with then you can do anything.......its a bit like climbing a mountain!

Back in the summer I got the builders in. A 2 year plan finally coming to fruition.........a side return with a roof terrace (its just finishing and Im getting my fantastic new house back! ). Then I started a new plan b business that is building amazing opportunity for me and those around me to live the lives we really dream and aspire to. Then I lost my job! but as one door opens the other swung shut........redundancy can be a VERY liberating experience and I can see so much possibility opening up to me, and I can only look back upon the last years hardships, pain, upset, heartbreak and rollercoaster ride with a sense that maybe it has all led me to this?

I have made some new friendships, Ive become much closer to even my closest, Ive moved on from a few and Im repairing others! Reason, season, lifetime! (it keeps coming back that phrase! -  thanks Magnus!) Im seeing opportunity in every disaster, mistake, f+*&up I have ever made.......yes this is the voice of the eternal optimist.

YES yes, it helps not to be taking mind shifting, pain numbing morphine metabolising pain killers any more......man they really mess with you...........depression, lethargy, losing all sense of time, perspective, reason and self......its a bigger recovery than just healing bones and getting mobile again! I lost a lot of time last year.....and now Im running to grab it all back.....people say thats not possible.......i disagree. you can, you just gotta get up off the sofa, stop watching telly and do the stuff that inspires you, and if you dont know what that is, cos youve gone brain dead in a coma of warm fluffy cushiony laziness, then pick one thing that you never did before each week and do it however small - inspiration comes from the smallest gains and whilst I was stuck in my daily coma I did manage to find a few small things to get me going again!! I have surrounded myself with a few key but amazingly wonderful people and they inspire me every day. Ive got plenty of time to sleep when Im dead! life is now. Im harping on about all this as one of the toughest things last year to deal with was the inability to do much at all.....for myself, or for anyone else. time did slip past almost incoherently in a way that horrified me at times.....whole weeks and conversations and moments lost due to pain and frustration and largely the drugs erasing so much from memory or even possibility!

I watched a lot of the paralympics. Those people are frankly my inspiration......they do it EVERY sodding day......they change their lives and get on with it! nothing holds them back and if they fail they keep on trying. Edison tried about 10 thousand times before he created the electric lightbulb..... that means he failed 9999 times before....but he had faith and belief and focus. thank god he did!

I wont give up on most people, I wont give up ever on myself (Ive proven to myself again that I can beat tough stuff thrown at me) and I will keep on doing........

A spoonful of sugar.....

......helps the medicine go down. Isnt that what we are all taught as children? If you ever saw the Mary Poppins film then you will know that it is an uptempo song sung by Mary Poppins, instructing the two children, Jane and Michael to clean their room. But even though the task is daunting, with a good attitude, it can still be fun. 

Im not sure that healing from a bunch of broken bones, any illness or trying to overcome some enormous feat of endurance even, is always that fun, but it is certainly a good way of trying to approach some indomitable or seemingly so feat or challenge......I certainly never liked to clean my room, but I guess the satisfaction of it all being tidy, even if I did just stuff everything in cupboards and under the bed, was something to take note of even if a bit short lived at times when invariably I then needed to find something and everything came pouring out on top of me! but of course that made me laugh too (most of the time!). Positivity of course always helps and finding a state of mind that allows you to switch into a mode that will support this when facing some horrible nasty,  is definitely better than the alternative of sitting, festering and being miserable. And look, Im not preaching! I did plenty of the latter stuff too!

I have been at both ends of this scale in the last year and its not surprising really that it takes both to be able to face head on, any challenge that is presented, misery and depression as well as positivity and an indomitable spirit -  dont let the 'b*****ds get you down (glass half full, optimism). In my case I hit the major low before making a conscious choice to turn things around an face my diagnosis head on. I can certainly say that once I did this earlier this year that things have started to transform, mentally and physically.

<<once you replace negative thoughts with positive ones you will start to see positive results.....>>

Furthermore, in a number of reports, optimists have been shown to live healthier lifestyles which may influence disease. Optimists are more physically active, consume more fruit, vegetables and whole-grain bread, and consume more moderate amounts of alcohol -  that has been my ongoing diet once the major healing phase was in progress.

"The relationship between optimism and health has also been studied with regards to physical symptoms, coping strategies and negative affect for those suffering from rheumatoid arthritis, asthma, and fibromyalgia.

It has been found that among individuals with these diseases, optimists are not more likely than pessimists to report pain alleviation due to coping strategies, despite differences in psychological well-being between the two groups." (G. Affleck, H Tennen, A. Apter. "Optimism, Pessimism, and Daily Life With Chronic Illness. Optimism & Pessimism: Implications for Theory, Research, and Practice. )

I looked up patience in wikipedia and its definition was  - Patience (or forbearing) is the state of endurance under difficult circumstances, which can mean persevering in the face of delay or provocation without acting on annoyance/anger in a negative way; or exhibiting forbearance when under strain, especially when faced with longer-term difficulties. Patience is the level of endurance one can take before negativity. It is also used to refer to the character trait of being steadfast. 

Why am I harping on about all this then? Ive tried meditation, massage, relaxation techniques, acupuncture, pain relief, sleeping, exercise, burying my head in the sand, denial, but in the end it was my state of mind that has had the biggest impact I truly believe. I have battled severe pain. Ive challenged the doctors, Ive done what I was told but also a lot of what I wasnt! Ive researched, Ive tried different techniques, Ive taken the supplements, Ive gone through an exercise rehab process, but fundamentally a few key things are really important.

1) keep people who make you laugh, look after you and dont sap your energy in your life.

2) eat well and live well (even if in pain) organise a few nice things to do and do them, dont wimp out because it hurts, or is tiring, or a battle to keep going and all you want to do is cry and give up -  it DOESNT WORK!

3) work hard  -  distraction works a treat

4) patience, more patience and a bit more!

5) self belief and PMA (positive mental attitude)

when life gives you a no its because there is a better yes down the road!

The long and short of all this is that last year about this time all the doctors were grim faced and whilst trying to be encouraging, they had no idea why I had developed such a dramatic form of osteoporosis? they all had their theories and the general consensus is still that it was the depo provera contraceptive I took which had the most radical and extreme reaction on me, in the rarest circumstances. so Im just bloody unlucky I guess. They couldnt explain the multiple breaks -  none had ever seen more that a couple in most people, my 21 were frankly a medical anomaly that noone could decifer. I saw osteoporosis specialists, rheumatologists, an orthopaedic surgeon and finally an endocrinologist. Months of blood tests, scans, ultrasound scans, urine tests, spinal xrays, morphine, painkillers etc etc you name it, and now a radioactive bone scan in 6 weeks time........all these did thankfully was rule other really nasty stuff out, but with no cure, no treatment other than vitamin d and some calcium, sick note off sports and the prospect that my spine might collapse if I ever had kids, with the threat of a wheelchair in the not so distant future, the future was definitely somewhat bleak. As Ive said tens of times before its more not knowing what and how to face the future rather than dealing with the diagnosis! so you can imagine....!

"sometimes the hardest person to face

 is the one staring back at you in the mirror!"

My appointment came around again with Dr Cox (cutey cox as I call him) last week, 7 months since I last saw him. Ive had ongoing pain all year, my ribs on my left hand side are still not healed, back pain, muscular pain and a form of fibromyalgia (latent bone pain), I could only think the worst. He left me to the end of his surgery so I was sitting there the best part of 2 hours waiting, winding myself up! but I know you are all on the edge of your seats waiting for the results!?

T and Z bone scores have increased from -2.8 to -2.3. (at diagnosis the L4 was at -3.2 and has increased to -2.7) = v severe OP 

 - just to remind you all someone fit and healthy of my age whos done a lot of sport all their life, eats healthily should be between about +1.5 and 2!!!

So this is something of a turn up for the books folks! this means that Very slowly im reversing. its a 4% average increase against my baseline, thus an increase in bone density! Suddenly the outlook is a lot less grim! Ive still got a long way to go, but thats what the patience is all about!

I can have kids  -  with a lot of support! last year they said it would be a risk not worth taking!

I will be able to ski again (my translation not theirs, but thats the positive thinking again, or optimism, or just plain pig headedness!) -  not for a while, but it may well be possible. (prob not the horseriding though, but never say never!) -  I might still get the body armor that I planned on though! I think its a sexy look! 

All of those other things that I was told I could never do again suddenly look like they might be possible at some point. not yet but baby steps!

He did also diagnose a stress fracture in my left foot! and Ive had a broken toe this year too! hence the need for a radioactive bone scan, to pick up on all the other fractures and why the ribs arent healing so well!

There are injections apparently of various supplements and stuff that top athletes have to speed bones knitting, but theyve never been tried in ribs -  maybe Ill be a new trial? He said that Im worth writing a white paper on! get that  -  lil ol me warranting a whole medical case study!

so Im going in the right direction. I have been self destructive, Ive been through anger, denial, depression, resignation and now the more positive taking control, positive and getting a grip! I happen to think anger and denial have served a pretty strong purpose for the good too. Ive pushed myself to forget and ignore my crappy stuff, and whilst the outcome of being bedridden after a big night out has often been the result (and not just due to some stinking hangover,( although those at least made me feel weirdly alive!) for a few brief moments Ive felt normal. the pain has been dulled and Ive ignored the reality......and it really hasnt harmed me. Im not condoning going out and going crazy but occasionally like any stressful job or crazy stuff that goes on in our lives you have to go out and let off steam! Its a form of purging that nasty negative stuff whirling around inside, which is only worse if you cant get rid!

The spoonful of sugar was taken, the bitter washed down with some sweet! Ive still got a few more spoons to take I know but it all helps.

Ive also added a couple of mantras......

stop saying I wish and start saying I will

its all in the art of the possible and not the impossible!

how do we really feel?

Sadness,
have you ever had one of those overwhelming feelings and you just cant really compute why it kicks in. you've had a nice evening, good company, good chat, but you walk away somehow just feeling undeniably un-escapingly bloody sad. why? was it a lost love, was it bad timing, was it terrible news we glossed over and cheered the other up because in our unique british way we gloss over stuff and avoid and ignore?? could it be that we bereave friends that we loved and somehow they lost the love for us, were we too straight, or honest, did we hurt them and dont know, did we pin our hopes on this person or that and find it was never going to work?did they hurt us, or some trigger was set off by a song or a smell or a phrase?  maybe work, pressure, sex, children got in the way? maybe drugs, love, distance.......god the list is honestly endless, but when it comes down to it you still walk away and think.....what the F**k! Your heart is in your stomach or your knees, and logic, rhyme and reason are out the window, is that whats is at play here.............?


maybe somehow its that we are driven by each other and our influence on each other and how that affects us. People, I dont think put a lot of store by how they affect people nowdays, they do just what suits them, we as a society have just become horribly selfish. its all about us now. its not about putting yourself in the others shoes. it seems rarely about compassion, its just us all existing in our own little worlds. perhaps Im ranting( I entirely blame the couple of glasses of wine I had tonight, naturally rather than a desire the yell this from the rooftops) but Im a bit fed up with it all. who are we trying to kid?


 I watched a tv programme last night about people who had lived over a hundred  -  the summary =  be kind, be optimistic, dont hold grudges,  get up and get on with it, keep active, keep your mind young and SMILE and LAUGH. but one thing that also rang through was that they stuck with people they cared about and didnt quit, they didnt run away from shit, they dealt with extraordinary things,  the war and bombs and crisis and loss, the depression, 35% of graduates walking the streets.... and serious bloody stuff that none of us have ever had to deal with  -  our worlds being blown apart and destroyed.....not them..... these people have lived not only 3 lifetimes on us, but the experiences of 5 or 6.....what a moral barometer they set!!!


so my latest dramas in comparison (because its all about me ;-) ).......I lost a cm in height in the last 6 months -  now that could be crappy back spasm and and pain just curving me over, spine starting to crumble,  and maybe I can find it again, but its a weirdly big deal right now. bones still hurt, no change there! friends still in their own worlds (london and life these days).....made new friends and I hope that continues, as people you meet at all times of life add to and shape you increasingly......bigger job, more stress and more satisfaction, family happy, projects created, fitness increasing......its generally all positive,


 and then 


it kicks in when least expected -  we all get it and its churlish to say we dont. even those who have been blessed still feel a foreboding at times! some blame the weather. some look at themselves and ask why,.... many dont! but is there a sense of entitlement now, are we too lucky and take people and life for granted? whatever it is we all feel a bit sad at times, inexplicably?!!! yes. We do. lost, juggling, racing to keep up, or just dont care. relationship hell, out of sync, out of control or maybe just a bit discombobulated, or maybe just a song playing. but on the surface its all fine, better than ages in fact......


 messed up? arent we all?  no, I think its more. its choice again. as to how we decide to react. ignore, face up to it, or just throw ourselves into a million projects......


but still we can feel sad. and I dont think its a bad thing. so we sodding should. maybe its our way of stopping and reviewing stuff. letting go of things and people  that hurt us, making sense of everything. dismantling things that we need to understand......whatever the reasons, its nature.


I have fought this stuff, been upbeat, told people often what they want to hear, often. and often been frank and straight and said what I feel (if you dont how would they ever know?)


 you ask a question.....how often do you want the honest answer?


but tonight I had a great night, yet I walked away feeling sad.......its life. Im here, and tomorrow is a new day.

getting motivated....its a bit of a battle!

My last update was all about how I was inspiring myself to get with the programme  - Rehabilitation Programme Sal -  RPS!) -  literally and get my body back, rather than trying to avoid the issue and pretend that its not really happening to me! And Im not just talking about whipping some of the lumpy bits into shape, although that is needed, its more about the fact that my body keeps doing a big fat fail on me and its getting rather annoying if Im honest! I am a bear with a sore head when the pain is bad and makes me want to lie down and just give up and sleep sometimes! I am this polar bear and my RPS is the penguin! I guess we all need a way of motivating ourselves dont we? a pair of symbols over my head might serve the purpose quite well it has to be said!

So yes, the swimming continues, but not managed quite the 2 a week that was intended. The massages have slipped due to various work pressures and frivolities concerning our Queen! and then the pilates centre ended up doing some special offer that utterly kiboshed my plans as they got swamped with people with vouchers and i couldnt actually book any sessions! so the last month has been a bit of a disaster. Im still doing a forest gump walkies style though so that has been keeping the butt moving! the outcome. BODY FAIL. pain levels back through the roof, painkillers back up to 30mg codeine. Im dammned then if i do and if I dont. It hurts if I do exercise and it kills if I dont. The first is definitely better than the second! and I have to do it if I want any kind of life and mobility in the coming years......

so I started some personal training sessions..........a specialist osteoporosis trainer who properly understands the bodies muscle systems, bones, the diet required, the stamina and most importantly has now started to instruct me on what I should and should not be doing exercise wise. so here is the depressing bit! None of the following:

• running, jogging or boxing  -  basically anything with impact! -  all too high impact 
• no sit ups or crunches
• no rowing -  back strain on my spine!
• no planks or side planks
• certain stretches are out!
• no work involving lying on my stomach, so superman stretches are out too! (pressure on those fragile little ribs again!)

......... the list goes on, and to think that all of that was standard only about 18 months ago when doing my Kilimanjaro training!

....in time my muscles will strengthen and my core will get better and then some of the above will be possible again, but its a bit of a set back again.

so I am doing:

• arm weights -  but low as if I try and carry too much then I bugger my back again and too much spinal pressure -  its all about the reps and low weights again now!
• lunges and squats, 
• uphill fast walking!
• powerplate stuff!
• swimming and running in water! (it really does work)
• pilates
• Im gonna give golf a go too! (christ doesnt life change! I mean golf -  cummooonnnn!)

Ive committed to 10 sessions with the PT to get me going. if I dont literalyl have someone watching and counting me through I start wanting to cry -  I know its all a bit pathetic, but the ability to get positive sometimes is just too much, and thats when not being sure what is good and whats not, is a bit terrifying. Add to that that im constantly monitoring if something hurts or not and therefore trying to find the levels and the number of reps and pressure etc of each exercise progress it really is pretty slow. And having always been super active and sporty is very frustrating, but of course not insurmountable. Like all of us its a matter of persevering and keeping going, and each little step is a step towards progress. I have broken one of my middle toes over the weekend -  really not sure how, but Im still breaking it seems -  thankfully this is just one little pig on the end of my foot so not crazy painful like the ribs!

I know people out there have a lot worse to contend with I really do, and Im not trying to overegg my stuff - these are just my little battles one step at a time. I know from Kili we can always achieve way more than we think and its largely about not giving up and the power of the mind to push us through. Im drawing down on that again now. Im tired, Im a bit emotional and its all hurting quite a lot, but who knows where I will be in a couple of months time........

"Rehabilitation Programme Sal" (RPS)

Of late Ive had another of those troughs that I go on about, and so "Rehabilitation Programme Sal" (RPS) was started about 3 weeks ago. As I said in my last post, I have chosen  to take control of this quagmire ;-!

I joined the gym, and tentatively started a programme of movement that whilst a bit scary - I can still break pretty easily and am technically still healing, and as you know, still have all the pain to contend with -  its a catch 22 situation if I dont!

The more I 'rest' the more I become a slug. This means that my muscles support me less that creates a vicious circle of pain and frustration. I cant move due to pain that means that to exercise is more painful, Im damned if I do and if I dont! But I took the bit between the teeth and started a programme of movement! RPS as Im calling it!

So Ive been swimming a lot. 60 lengths each time I go. (its a shortish pool so not quite as impressive as it sounds) I swim pretty well so its about half an hour. More than that and the rib pain gets beyond a level that is copeable, but already after 7 sessions I can feel the difference in the spasm in my back and muscles in my intercostal ribs. My Chinese doc has even commented on how much better my back seems! I will get faster and just add more lengths in that half hour as I get stronger. My arm muscles are returning already and my legs feel flexed!

Im doing PT sessions also with a specialist in Osteoporosis, so once I ahve got a bit stronger generally we are starting a programme of weight bearing exercise, lunges etc that will strengthen and tone. Kat has focused on diseases like this as they are increasing and so many people have ligament, muscle and back injuries and the rehabilitation treatment is pretty similar to what I require!

I have also got a bunch of Pilates sessions booked in, the best and one recommendation that actually all my specialists agreed with. The reformer is thought to be a good lesser impact way of building muscle and strength and possibly at some point increasing a little of my desperately absent bone mass!

Im having 2 massages a week and an hour of acupuncture! its lovely so I feel pretty pampered, but its also really helping the general pain management -  I highly recommend it! i got a bulk package so the cost is pretty reasonable, even if whilst it feels a little extravagant, I also know that I simply could not work like I am at the moment and live a more normal existence without it! strange but true! and frankly I think its a pretty damn great excuse to justify having a back massage, head massage and reflexology combo every week! yeay!

I have also been hit by the bug going round -  a hacking chest infection for which Im now ringing out to the sound of 2 more drugs -  co-amoxiclav and doxycycline, so hopefully they will treat the chest and I can get on with the next level of my RPS! its a bit worrying that the scale of my cough right now could in fact crack a rib so Im being a little bit precious about it, but hey -  I really cant cope with more breaks right now, I want to keep the run of months with out a break in the black and not the red! Its been since September so im on a  new record!

Im also going to try and swap my wine habit for a vodka or spirits one. They are infinitely better on the hangover front and much less fattening, but that can wait until post antibiotics!

life is like........

....have you ever been stressed or upset and you find yourself doing something quite unexpected? Im talking about doing a Forrest Gump and running when you previously hated it, or baking cupcakes when you have never whipped up a batch in your life, or starting to doodle something having hated art at school, singing, dance, smoking, I dont know what, Im sure the list is endless.

Well, when I was getting divorced about 4  years ago I found myself having a Forrest moment.....running a LOT! It was therapeutic. When I got stressed about it all I'd throw on my trainers, hook up to the ipod and run. Now, Im no marathon runner, really, and I still have no ambition whatsoever to do one. This was just running wind, rain, sun and snow! and yes I got fit, slim and found that the natural endorphins were doing me the world of good!

A few years on, and another round of challenges, and Im running again. Well I say running, its more of a fast walk right now, given my bones and pain and all that stuff, but Im pounding the streets all the same. Im walking to and from work - 50 mins each way! Im hiking the streets again come rain or shine and its sort of strangely clearing the horrid fog in my head that has descended in the last year.  And yes -  in truth it is REALLY helping. Must be all those endorphins again! and the fact that Im actually able to walk and move this year in contrast to the complete disabled state of last!

You have to take control in order to stop feeling like the victim and as we all know we have a choice in everything, whether its sticking out a bad relationship, being nice/ nasty to someone, taking that job, quitting that job etc etc.......of course you cant control what others say or do to you, but you can control how you choose to react to them. That has been a tough one for me recently, having been ostracized by a bunch of friends on account of apparently being honest about how I felt about something that was in fact really upsetting me. I know we are English and therefore it is law that even if someone is rude, unkind or insensitive that apparently we absolutely come-what-may NEVER actually tell them how they are affecting us, we must keep that stiff up lip and simply zipit! I didnt do that and hence my issue -  I broke the law!

I was finding that I was increasingly upset and stressed, really upset and distraught. Increasingly  paranoid that in some way Im just some terrible person and Ive clearly done something awful to have been punished not only by a lifelong condition being thrown at me, but to then double up on finding people adding their own form of judgmental punishment on top  -  just to add cream to the pie! But as I said, it all comes down to how you choose to react to that, that and accepting that I had a  choice or not in the first place as to whether I tell the person how they were affecting me! I can (choose to) be the victim, and I was definitely feeling it. I can also decide that actually those that treat me like that are either so un-self aware, are very aware of what they are doing or simply not the friends I  thought they were, especially if tehy stop talking to me on account of that! (that last one is the toughest actually to deal with, and acknowledge -  especially when they are the people you spend the most time with and have shared private thoughts, time, holidays, weddings etc with) I can only hope that it isnt that last one! Really!

Anyway, I deviate, I was stressed and upset. My plug hole was sucking me down. I was circling rapidly towards an unspeakable place........just like when I was getting divorced and was starting my life again. I had left a home, all my belongings and had to start from scratch back then and I remember feeling the same sense of panic then as I have done of late. What will the future bring, can it get better, who, how, what would come along? And that was when I started running! My feet just carrying me along. This time its pacey walking! It clears my head, it lifts the fog, it raises me out of that navel gazing that we are all prone to doing when down in the dumps! The endorphins are going again and Im feeling more positive. There is no real change in the stuff that triggered this, but I can but hope that its a phase! Im choosing to get on with things, its the best I can do! actually its the only choice I want to make!

So I joined the gym -  Im swimming 3 x a week. Im walking and Im doing pilates! RPS has kicked in, the butt is being worked, the muscle memory is kicking back in! And Im pulling a Forrest Gump. so if you dont get an answer on my phone, Ill prob be out having a walk!

What was it that Forrest said?  "Life was like a box of chocolates ....You never know what you're gonna get......" In short -  you can always choose!

2 steps forward, 2 steps back - equilibrium?

My last posting was a rather impersonal summary of the 3 different types of pain. I posted it so as to raise more awareness to those who either suffer and will find it a way of clarifying or for those that need a better understanding of where Im at when I say Im in a constant state of pain. (ie persistent, as opposed to chronic or acute)

Its a concept for most that is hard to really grasp. I can also relate to that,  as I remember when my mother had constant back pain, when I  was a child, and I could never really fathom why she looked ok and yet insisted that she could barely stand or walk. That is the problem with pain -  its there, the person is suffering, but other than a grimace, or pale complexion, a few tears or so, there is no obvious outer sign of what is being endured.

Im now back in full swing of a more 'normal' life. I work everyday again, I try and see friends occasionally and have a bit of a social life now and then! I carry my own shopping, I even managed to do a bit of gardening last weekend, went for a walk, drive the car, take public transport etc. So all in all a pretty normal existence you might think.
The reality though is a bit more complex than all of that.
Yes, most mornings I stretch out in bed, greet the cat, and the first question that usually crosses my mind is what pain level today? Im normally around about a 1 or 2 first thing in the morning! A bumble and stumble with stiff limbs and sore joints into the bathroom and the baking hot shower usually serves to revive and warm me through to get me a bit more functional. I am challenged of course with the usual crisis that most women have every morning of course with what to wear and that provides something of a brief distraction, until I realise that due to lack of activity and eating a few too many naughty things, plus copious pills that have utterly disrupted my whole system, over the past year as way of comfort that I then despair that actually the dress I want to wear is now a bit tight! bleugh! That daily trauma over and Im generally in gear and out of the house quite soon.

I still have about 10 different pills every morning to take, magnesium citrate, calcuim, vit d, vit e, zinc and vit c combo, iron, my magic Chinese potion, co-enzyme q10 and Im off! should be too on that lot! but Im basically taking the magnesium, zinc and Iron cos Im knackered all the time. The magnesium is also meant to be good for bones and healing and bad sleep patterns. Co-enzyme is also good for immune and healing. vit e, hair and bones. You get the picture. And then there are the real drugs. Im still taking the naproxen anti inflamatory 1- 3 times a day. and then its a quick decision when I roll into the office as to whether its the 20mg codeine or the 30mg? I have a draw full of painkillers in the office or all types. If the tube journey has been bad of course Im on the 30mg. If Im having a better day its the 20. Naturally the lower the number the better in terms of side effects. I still get a nauseaous feeling with them and the higher dosages Im just a bit more fluffy headed! I still have to write nearly everything down all the time, but that's not such a bad practise in meetings and making decisions all the time anyway!

I have to say that I thought that by now Id be 'more stable'. Im pretty level with the pain and its just a way of life now mostly, but its also a bit catch 22. I will turn into a total slug if I dont do more exercise and activity, but its really quite painful to do so. when I do,  I cease up, I get stiff, I have higher pain levels all which I have to keep pushing through to try and combat having no core muscles (which hold me upright) and arms and legs now like jelly rather than the more toned appendages that got me up a mountain a while back. So slug I am at the moment. Im not sure how many slugs grew muscles, some might argue they are just one slimy muscle that slopes about, but whilst I dont think Im so similar to one (at least I hope Im not there yet), it seems that my body is going that way. My back hurts all the time, as do my ribs still  -  I guess they are STILL healing,  I feel a bit without a spine frankly as sitting up sometimes is really quite painful. The muscles I do have stretch and hurt like hell too -  probably from extreme underuse!  Its a form of fibromyalgia I believe -  constant aches in your muscles and bones -  another condition to add to my list!

......the last 2 months has been something of a roller coaster again starting with all those test in January, the ups and downs and further uncertainty being lobbed over the fence at me  -  constantly questioning, what , why, how come and is there something more that is driving all this.......tumours, spine fractures, or just crappy genetics!?

I went away to the sun to get more vitamin d and warmth in my bones. A nice alternative to the usual skiing trips at this time of year! I thought that the sun would help the pain, but it didnt. I had pain every day. It was devastating. Actually it knocked me back a lot. I had it in my head that living in the heat would really help. Maybe I just need to move to a hot country, but it didnt seem that way even after 2 weeks of hot sun in the Caribbean (I peeled 3 times -  thats how brown I was and how much sun I got, and dont go starting on about skin cancer now........I used factor 30!!). That and getting back to my work schedule (no stamina still so constantly knackered, but I am improving day by day) and of course the daily struggle with my body not doing what I want it to do.

Pain as I have said before is knackering! yes yes, I keep going on about it. I have had a bad couple of months though. I get back from the sun, and BAM into the next downward spiral. In kicks in a round of drinking myself bonkers on a Friday night after a long week (not so uncommon I know),  total denial and utter misery. "Wits end" some people call it. Depression setting back in, feeling pretty wretched generally. I bit the dust again! by the time I got to Easter I was holding down a job and getting through the day and then just functioning through the evening to start the next day. I dont really talk about this stuff to anyone, I put on my face in the morning and get on with it all. You have to dont you!? but it doesnt really help. Actually it gets worse and worse. The more you feel the less you tell and externalise it. You think people are bored, you think people are disinterested -  actually mostly they are, they only ask out of politeness and then you see their faces cloud over.......so this thing grows inside you and starts to eat away........the big black cloud decends and there really doesnt feel like much of the silver lining  that everyone promises and goes on about!

So home I took myself. The lab puppy is now a beast and bounced like tigger when I arrived. Isnt it wonderful the way animals live so utterly in the present? I found myself wanting to take a leaf out of his book........I had a long chat with mum, who with her medical background helped explain that its actually very common to go through this when you have been diagnosed with a lifetime illness or disease. You get angry, resentful, depressed, feel like its not worth it any more. Its tough finding a way to come to terms with a condition that constantly seems to hurl crap at you and make every day a challenge to get through, and all on the outside looks well. Oh the irony! I know that cancer sufferers often beat the cancer and then get massively depressed because the thing they were fighting is gone and they feel a bit empty and goaless. Im just finding a way to deal with crap that goes on day after day, no treatment, no reprieve from the onslaught, no cure!

But I do know that the only person who can get through this all is me! Its my shit to deal with, its the challenge that I have been handed by some fateful signal out there in the ether that has set me this goal. Get on with it, pick myself up and find a way to actually function day to day and find a way of living that doesnt feel so compromised all the time. I do feel compromised. My whole life feels  at times like it has dropped down through a plug hole...... All the sports and activities I love to do -  the stuff that makes me me, or so I thought! I found my riding boots and chaps under the bed last weekend, the ski boots, the sailing gear and the windsurfing kit. I cant use them but I refuse to throw them away! Am I mad or just hopeful that one day maybe there is the slimmest chance I can use them again. Or do I just defy the doctors!?mmmm

I do know that my job, and my interests in art and culture, travelling and music are all still there, it hasnt all gone, but I have to focus on those things to find a lift! So its time to rehabilitate.

WHAT is PAIN?

“Pain is an unpleasant sensory and emotional experience associated with actual or potential tissue damage, or described in terms of such damage… Pain is always subjective. Each individual learns the application of the word through experience related to injury in early life...
It is unquestionably a sensation in a part or parts of the body, but it is also always unpleasant and therefore an emotional experience”. (International Association for the Study of Pain, 1979)

Importantly, this definition indicates that pain can occur without a recognised or obvious cause
and may also be influenced by our emotions.There are other ways of defining pain.




Acute pain
Acute pain is pain that lasts a short time and is clearly caused by tissue damage. This includes minor and major injuries, burns and surgery related pain. Acute pain usually improves within three months. If pain lasts longer
than three months it is considered to be persistent


Persistent pain
Persistent pain (also referred to as chronic pain) is pain that lasts longer than 3 months

It includes:
– pain that has an identifiable or obvious cause (an injury), and – pain that no longer has an identifiable cause
(i.e. the original injury has healed) Persistent pain with an obvious cause includes conditions like arthritis,
spinal stenosis, degenerative disc disease, or persistent leg ulcers. In persistent pain with no obvious cause, pain continues longer than you would expect (e.g. fibromyalgia, which is generalised muscle
soreness and stiffness). In these cases the nervous system misfires and continues to send pain signals even though there may be no damage.
Persistent pain can also be made worse by a lack of exercise that causes physical weakening.
Our thoughts and emotions can also affect how we respond to persistent pain.


When persistent pain becomes a problem

1. Reduced activity, Unhelpful beliefs & thoughts, Repeated treatment failures
2. Long term use of analgesic, sedative drugs, 
3. Physical deterioration(e.g. muscle wasting, joint stiffness)
4. Feelings of depression, helplessness, irritability 

Side effects
(e.g. stomach problems, lethargy, constipation)
Loss of job, financial difficulties, family stress,

Chronic Pain = Excessive Suffering
© MK Nicholas PhD, Pain Management & Research Centre, Royal North Shore Hospital


Because relieving persistent pain can be difficult, it can take time to get back to a fuller, more rewarding life. Managing persistent pain is about much more than just medicine. By being actively involved in a multidisciplinary approach to pain management, you can help your recovery and improve the quality of your life and how you live it, even though your pain persists.A multidisciplinary approach means you consult a number of healthcare professionals, including your GP and possibly a physiotherapist, pain specialist, social worker, nurse, occupational therapist and psychologist or counsellor to develop a range of strategies for you to use in managing your pain. It is important to follow your healthcare professional’s advice. Management
strategies are always individualised, because pain varies so much from person to person. Someone with arthritis may do well with occasional use of an over-the-counter pain reliever, whereas someone else with arthritis may need a prescription pain reliever and regular appropriate exercise to feel good.
When pain persists your role in managing it becomes really important. Remember, there are ways to take some control over your pain. A good way to start is to understand that what you think, feel and do on a
day-to-day basis will have an affect on your pain.

Accepting Pain
Most people who are successful pain managers have learned to accept their pain. This means accepting that although you may not have caused it in the first place, it is now your pain. Pain may bring about feelings of anger, sadness, frustration and grief, and that is normal. However, if these negative emotions go on for long periods, they tend to make pain worse  Whilst you and your healthcare team may be involved in exploring strategies which help you with your pain, at the end of the day it is you who experiences it. Successful pain managers say that they choose a team (for example partner, doctor, counsellor, other healthcare professional) which helps them decide on the strategies that work for them, and they develop a tool kit which they use to manage their pain and which allows them to participate fully in important everyday activities.  Some examples of various tools you might choose are discussed in this booklet. Many people report they are helped by using exercise strategies, special relaxation techniques, choosing enjoyable activities that they pace well, and organising their lives so that there is less stress and worry

A bit of a 'curve' ball!

Happy New. Gosh well it seems a bit beyond that really now that we are at the end of January, but a new year it is and mean as you want to go on!

So, with the new year has come a whole new process, new hospital, more tests, ups and downs to go with it. I saw a new endocrinologist before Christmas -  Dr Cox. He's a totally different type of my doctor in my opinion. One that actually wants to know why and  how rather than just sticking at what! it seems something of a rarity these days to find a doctor who looks at the whole picture -  emotional, full history and even the smallest of things that may or may not have some sort of indicator towards what is really happening, and for anyone suffering from osteoporosis I strongly reccommend that you get your GP to refer you to one. They look fundamentally at the chemistry of your blood, how your body works and reacts to different things such as hormones and changes incurred in your body as a result of stress, changes in cortisol etc, immune issues and even imbalances in the various vitamins and minerals in the body. My specialist is one who focuses on osteoporosis, calcium and hormonal change. On my meeting him the week before christmas he set about scheduling me in for a raft more tests, 48 hour urine, 10 blood tests (what seemed like about 2 pints of blood to me!) and scans and spinal xrays. So the new year and a start back at work full time also yielded multiple visits to St Marys in Paddington, a vast and sprawling complex of buildings, corridors, rooms, machinery and hospital smells! on finally negotiating the maze that finding the Mint building was, I saw the wonderful endocrine nurses, Claire and Amu. Both experts it seems at taking blood, I managed not to pass out, go completely grey and wobbly and not go into panic attacks -  a long history of needle issues, multiple puncture marks in my arms hands and feet in the past, when blood has been drawn from veins, that seem to have some inate understanding of when a needle is coming within mm of them, and then disappearing into my arm deeper to hide from the trauma of that point! from there it was the scanners and xrays.
................and then the wait! until the 26th -  for the low down on what was really going on.
Now this all in and of itself does not sound so bad but that combined with the knowledge that they were testing my very specifically for something called Cushing syndrome/ disease, it was a bit of a shocker! Cushings is an awful condition that messes with the pituitary and or adrenal gland (the one just under the brain) that controls cortisol and other hormones. As one hormone goes mental its like dominoes and the rest go caput too, so this is just the start! when looking through the list of symtoms I seemed to have a rather alarming number of them! among which were severe bruising, sever headaches and migraine, hormonal changes, redness on the cheeks (face!), imune problems identified by multiple colds and viruses, weakness of joints and bones, multiple rib fractures, possible spinal fractures and tiredness. hmmmmmmm tick to all of those! yieks. the treatment for this disease is also really rather nasty so I really didnt want to start indulging in a mental hopscotch on this one, but Im afraid I really couldnt help it. The scenarios run through your head no matter what you try and do to disract yourself. Its a really rather nasty situation, and all I could do is wait for the results to come back. The urine needing to be cultured and tested about 10 different ways!

So I spent the best part of January in a further state of denial and avoidance like the proverbial ostritch! I managed about 15 days on the wagon and then fell off spectacularly by getting mashed on red wine! I put my head down at work, and got on with the job, had early nights, ate good food and tried to focus on the fact that whilst im still aching a great deal and have pain constantly, the level is more like 2 out of 10 rather than the previous 8 or so from september etc last year. Im still on painkillers! yes STILL! I tried to get off them again this week and managed 5 days without any, but by the end of that my back was in terrible spasm, I was struggling to sit up for long periods of time and worst of all I was in withdrawal again.......that addiction issue again. SO Im back on them and weaning off more slowly. It seems being so darstardly tired all the time is also a by-product of my withdrawals!

Right  -  back to the diagnosis. After a much expected sleepless night, which I might add is quite a change in my world of otherwise still needing at least 9 hours a night currently whilst I have no stamina at work, I met my mama at the hospital at 2.45 and up we went to the mint 3rd floor. A long day for the doctors, meant a 1.5 hr wait, and I was seen by the registrar and then Dr Cox himself.

NO cushings. Phew! major sigh of relief. BUT, and of course there is always a but isnt there, good news and bad, part of lifes balancing act! The but is that I have a rather nasty curve in my spine in the upper region across my spine between my shoulders. The part that not surprisingly I have suffered a great deal of back pain in for a number of years! And in osteoporosis terms this is not good news. It indicates, although it is not completely clear if or not, that the vertebrae, at least 2-3 of them have possibly had fractures and are compressing/collapsing (for want of a better term!) and therefore creating a curve or early hunch in my spine. Think old people and hunches and you get the picture. There is not much they can do to fix this, only physio, weight bearing exercises and some specific shoulder and back muscle exercises that will try and keep me upright at best! So, no real surprise now when all pain of past few years is considered! I wasnt just slouching and being lazy! (the picture above shows how the spine starts to hunch! theres a link in the title bar if you want more information on this!)
I should expect to continue having aches in my ribs whilst they heal and strengthen, they will of course take 4-5 times longer to heal, so Im coming up to about stage 3 now, so only another 4 months of healing then!
Im not allowed to take any other medication, only what Im already on for pain management. Im now on increased calcium doses and vit d for next 6 months. magnesium citrate and the other supplements. And now to the scarey bit. They both sugested that having children was really of very great risk currently. They didnt say never, just definitely not now! specifically due to the fact that due to the advanced osteporosis state in my spine (worse than they had thought) I would not be able to carry the weight of a baby on my spine. All the calcium would be sucked from my bones further and weaken me more excessively! its not so much risk on the pelvis at birth, although that could be problematic, but my spine really is a bit of a mess, and carrying a baby would produce many other complications possibly! So a rather nasty shock after the somewhat brighter diagnoses of the previous two specialists later on last year, I seem to have gone full circle on that on. These doctors are focusing on getting my calcium levels back up again and to try and build me up so that possibly in the future I might still consider this. Its really a bit of a shock to think that this might be the blight that actually prevents me from bearing children, but Im focusing on being positive and that in time I can achieve this and with the right support I can have kids. They are also concluding that the depoprovera really has had a rather drastic and negative impact on my body. rare but possible on this contraceptive, so again I repeat please dont take it!

Im booked in for further tests, had more bloods for the red marking on my cheek and got 6 months of being terribly careful and managing pain ahead of me. Its not all doom and gloom at least. Im back at work, loving it, Ive got a close group of friends, Lei, Paul, soph and claudia in particular supporting me and a few special others (afar) keeping track and dropping me a note of word of much appreciated support. thank you. Really, you have no idea what it means. I know its boring dealing with people in pain or ill. I try not to moan!

So, more sun, more vitamins, a bit more sport and exercise is now possible, lots of red wine of course, and after a nice quiet January Im looking forward to Feb and the rest of the year hotting up. Its been a mild winter thankfully, the cold is a total bugger for my fractures and ribs, perhaps Ill move somewhere hot!!! ;-)

I really wish everyone good health and happiness in 2012, seems 2011 was pretty dismal for many!

xxx