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!

latest status

So, another month or so on and where do I find myself this week? its about 4 or 5 weeks since I was in hospital and yet again Im not really at all clear where all that time has gone. Im timesliding.

After I left hospital my bro got me up to my parents place in Suffolk where I lounged in the garden in those 10 days of glorious indian summer that we got in September. Back to london for more appointments and tests and living quietly since. (see previous blogs for those updates)

Im still on whacker killers, but I decided that I was going to give myself a bit of a push and go back to work earlier than last time. Pain levels are still high, but I was getting to the point of just drifting from one day to the next in an endless stream of nothingness. Yes I sorted out some cupboards, paperwork, made a tray, did some filing, applied for a mortgage and had a daily wander in the lovely local parks and shops (not a great state of play for my current account  - I can say that is one major advantage of being at work, not to mention that there isnt a spare inch in my wardrobe now either, note to self......monitor major shopping habit!!) but all in all i didnt feel like I was really making progress. This is not really the case in reality. I was resting a lot, eating good diet and not drinking, and making small steps daily in what I could manage to do for myself, so as a girlfriend of mine said.......small achievements and goals to check off........like a gold star sheet when your 5! I must have a full sheet by now, maybe I'll put one up in the kitchen! an achievements chart!hmmm.

SO, I went back to work on Monday. HUGE tick. I was high as a kite. Loved seeing everyone, arranged my return to work schedule, spoke to doctors, made lots of decisions, status reports from my team and even met with my boss. It was a busy day and I barely stopped. I had to go back up on the painkillers to get through it all and by the time I flopped on the sofa around 7 in the evening, I knew I wouldnt be doing a lot for a while.

Tuesday and WEdnesday I barely left the house, did work calls, read some reports, emails, and generally caught up with work stuff, but I was utterly floored! my body was simply not responding to my mental instructions to carry out basic tasks. ITs rather like having ME I suspect. I was utterly knackered and body and brain simply not working together! and then also not sleeping just to add insult to injury!

Work again on Thursday, again productive and I have a list an arm long of todos! now I can get stressed about too much to do and how to fit it all into 2 days a week! but a good problem to have. Nice also to be needed, I was starting to feel that I might not be a necessary cog in the wheel! My team reassures me otherwise. thanks peeps! But I will say that Im tired. par for the course and like anyone whos had a holiday for a few weeks, those first days and week back at work are always a bit overwhelming and knackering even if you are fit, which of course Im not!

My fridge had got to a rather sorry state this week, so a rather emergency shop was done today on the way home slowly following a chat with a journo about this whole saga. She seems to think that its a good message and story to get out there, so I'll keep you posted on what happens there! Maybe I have a voice and a cause here and this is my time to charge like the lightbrigade in the cause for osteoporosis in younger people (there is so little research on this currently!)

A couple of other things have occured over the past few weeks too though. My phone deal with 02 is definitely working out more cost effective and I think I might finally be using some of those 1000 mins I get in my package. Im going all old fashioned again, Im actually calling girlfriends/ friends and chatting a lot, texting is suffering a harsh demise in some regards in my life,(that could also be because Ive developed lazy finger syndrome and cant be bothered to type!) and facetime is getting a great reception too. love it! although I do have  a slight panic about bad hairdays and smudgy lippy or eyeliner when Im actually "facing"!! I feel like one of those teenagers that had their own line in their room and used to constantly hog the phone (Im aware they still do this, but just on a pay as you go mobile phone now!)........and people also love actually chatting too......really! how and when did we all allow ourselves to get so impersonal and stop talking to each other?

Ive also been using the postal system a lot more, messages and cards to friends, little things to send in the post, its given me a lot of satisfaction, and be honest, we all love getting a letter or package in the post!
so Im also going to champion us all chatting and swapping addresses again, like we once did about 10 years ago in the heyday of the filofax and brick mobile phone! the funny thing is that getting a note or gift in the post can go a huge way to brightening someones day, and those little things have made such a huge difference in my rather bubbletastic world of late!

And lastly, I have discovered that covering myself in black charcoal and thinking that Im giving life drawing a go is a wonderful way to switch off! It remains to be seen that i can actually make anyone look like an actual human being through the medium of carbon on paper, but it was fun and messy and for 2 hours a week I was managing not to think of anything in reality in my life and just switch off to focus on naked body parts and whether the knee was in line with the nose and the right hand! Oh well, all quite good for a bit of positive thinking and well, any excuse.......

It has been a tough week too though. Ive done a lot of research this week on both depo and on osteoporosis and the more I read the more frightening it gets. Ive joined discussion forums for fellow sufferers and I cant begin to say how many people seem to feel as isolated by this illness, as I have. Doctors just dont have the info and the knowledge and no-one seems to know how to treat this condition in people under 50! the drugs and medication is so limited if not agressive in so many of us with horrid side effects. many are dealing with alternative solutions, diet and general support. But it is scary actually how many people are affected and not just getting the odd broken bone, these people are housebound, in constant pain, many have walkers or wheelchairs.......its a slow and silently progressive disease,  and Im finding its very hard to take that all in still. I dont know if Im still in some place of denial and not wanting to face up to all this, but equally I dont want this to beat me. I will keep researching and messaging and finding out all I can. I feel its a responsibility to myself as well as others. If Im honest I do find it a bit depressing, but the only way to deal with this is to confront it and just find out more.