Well Im not too sure how most people react when they are informed about some nasty thing, but Im guessing that its usually something along the following lines (especially if its about someone else, or they dont know what it is!)
1) make lots of appopriate sorry noises, shock, sadness, upset feeling, slight knot in the stomach or feeling of tension
2) go and look up on wikipaedia or googleit! (if its something you dont understand! oh the wonders of technology these days in our pockets too!)
3) offer some support
4) get on with their own shit.
5) call and chat and do friendly supportive stuff
Now there is nothing right or wrong about the above list (its pretty much what I would do so theres no saying if its right or wrong, who am I to dictate!), it only becomes a problem when actually people start to assume what they think it all actually means. There is some sort of statistic that as a patient you only hear about 40%, if that, of what you are being told and therefore when its something bad you really need someone else there being practical with all the questions and gathering info. They arent quite the same way emotionally involved as you are and can take the info in better - note to self - mum coming to my next appointment next week!.
When I got my letter in the post (I know - it was a bit of a shock not to have an actual human being tell me in the first instance) only a week ago in big cap letters : Diagnosis: OSTEOPOROSIS ....I have to say that I then had to read the rest of the letter about 500 times to actually absorb what the hell I was seeing! not just a shock, I didnt think it was possible in someone my age. WIkipaedia on, results, journals, whitepapers, peoples blogs immediately found, within about 10 mins Id got a full perspective of the entirity of my position. And it really DIDNT LOOK GOOD. In fact it looked and still is f*$£ing scarey!!!
Now, I love people and have lots of fab friends and obviously some have been closer to my various dramas more recently than others, so they were the first to hear. They all reacted brilliantly and texted or called immediately (you know who you wonderful people are!) to offer support and just a shoulder to cry on, of which I was definitely holding back the tears and the shock to most! people have offered to cook me dinner - thank you (but just bear in mind that Im not very good at clearing up after you ;-) although I love and greatly appreciate the thought and the company, due to the pain im in !). one person though did not react this way.
they were too tired after a long week, they didnt bother to find out what it was, and they rang me from the pub about 6 hours after I had first texted them the news and that i was in total bits and manic shock! Now why is this all so unreasonable you ask, they were clearly tired after a long week? well this person was the person that I have been supposedly going out with for the past 4 months! needless to say Im not now. Such selfish behaviour is really beyond the pale when your girlfriend has just been told such horrid news. a cuddle and a bit of moral support wouldnt have been hard and would have gone a long way! So, hes gone, yeay! another great piece of news for last Friday, and it wasnt even the 13th !
But it did bring me to thinking about how people react to things. I remember once when I was about 10 one of my mums best friends died very suddenly. I laughed! I was horrified at myself! But I laughed not because I was insensitive and mean, it just happened. I was shocked and it just came out that way. This chap clearly couldnt deal with his own crap so having to deal with mine was much too much and his way of dealing with it was to run away. At least I found out now, but it was a bit of a double gasp!
So back to what people hear. Im discovering that people hear "old persons disease..... Treatable.....vitamin deficiency........ and then proceed to tell me that Im actually fine and that its not so bad! What they dont hear is...... RARE diesase for my age and not curable only manageable, dangerous, life on hold til I know what Im actually dealing with.
So if you do happen to see me or speak to me in the next few weeks, Im basically crapping myself, I feel like my life is somewhat irresolutely over right now, all the stuff I love doing is not allowed any more, I cant drink (much), I cant ride horses, climb mountains, run about or really do anything Im accustomed to doing and Ive got to work out exactly what is left. maybe think about what it means to break everytime you fall over! and then the pain for weeks afterwards...........sorry, its the only way I can put it into some sort of perspective, ie the one Im living in right now. And yes - Im in a bit of a depressve 'trough' at the moment! Such a contrast to the "up" that I was having this time last year, the parties, the fun, the weddings, the gallavanting around, my job and colleagues (Ive been off work most of the last 5 weeks) and not least training to climb a mountain, something that I never thought in a million years I would ever do, and now to my horror discover was unbelievably dangerous even back then! Even more so that for the average Joe.......but I climbed that mountain and I got to that peak (with some help!) and the contrast of my life this time last year to what Im facing now is just too much to even take in!
Ill climb out of that trough sooner or later once I know what Im dealing with, but a good hug and a chat goes a really long way! Oh and just because i have this doesnt mean that Im a leppar and that you now cant invite me to anything - I can always let you know what I can and cant do and its still nice to be invited even if I cant do everything - but I am pretty limited! (I write this as some people have already asked/ said this to me!).
Im trying to draw up an inspirational list of 'fun' things that I can do from here on in......please help! and no silly suggestions please like jumping out of planes etc (actually thankfully Ive done that one already anyway!) although maybe the commedy value of some would cheer me up no end! chuck em in after all, maybe we can get a voting system going on which ones I should be aiming for when I am a bit stronger and less like a brittle twig!
Ive got lifedrawing and learning Spanish and Italian so far! someone I know suggested growing garlic and veggies in my garden so Im doing that one too! maybe I'll become an arts and crafts obsessive and be plying you all with my home thrown pots over the next few years! watch this space..........and add some of your own!
Sunday, 17 July 2011
a new diagnosis
......dufuss, accident prone, 2 left feet, dingbat, disaster zone.........just a few of the labels Ive had given to me over the past 2 years.....yes, its funny and you start to believe it, but actually it turns out there is a reason. On the flip side Ive climbed Kilimanjaro and recovered from a skiing accident that the doctors told me that my knee (a torn exterior cuciate ligament) would take 18 months or more to build up and be working properly - I did it in 6 months from Feb 2010 to October 2010 when I climbed Kili and defied them. I guess all that shows is that when you set your mind to something you can overcome it and actually prove 'them ' wrong..... And it turns out that actually Im not any of those things. People have the same 'accidents' and incidents every day of the week, it just turns out that when they get a bruise, I break!! lets hope that same doggedness to fix for Kili will help me in this next few months and the years ahead!
The long and short of it is that I have a very rare and pretty dangerous form of osteoporosis. yep - to you and me and anyone elses thats an old persons disaease most of the time! But Im 35 and the variant I have makes it super dangeous for me to do pretty much anything right now.It might be genetic, thats being investigated. I have deficiency in Vitamin D (the sunlight vitamin) I have little and no bone density in my ribs, spine and neck and a small amount in my hips. In short, if I fall I break, if I roll over the wrong way I break, if I was to fall off a horse or on a skislope I will break. Its dangerous for me to have kids right now as I would break! basically pretty much my life the way I have been living it the last 20 years means that Im likely to break, which means more pain, more pills, depression, house arrest a fuzzy head from the likes of heroine and morphine based pills and wondering what the hell happened! Now, generally Im active, Im sporty, Im in to anything you throw at me, I love the outdoors, riding, partying and socialising, walking and clearly Ive climbed a pretty significant mountain too! Im in limbo right now whilst I get reffered to yet another specialist to find out just exactly how they are antcipating on treating me and helping me get stronger. For now my life is on hold. For now Im just eating a healthy diet, drinking less, sleeping more, resting more and dealing with the constant pain of the 6 current broken bones I have, that are desperately trying to knit and really struggling to do so! (6 weeks of healing time has become 4 months!!!)
So how did I get to this point? Well it turns out that in that same skiing accident in feb 2010 I also broke a couple of ribs. No big deal I hear you say, and so I thought too. I took some painkillers, took it easy, and even went off on another long weekend trip a month later and with heavy knee strapping and some painkillers and ibrubrofen gel, thus I managed a few more hours on the slopes, albeight v slowly and cautiously.
I took up a personal trainer and focused on a super healthy diet and bit by bit got my knee to mountain fitness. I climbed a few scottish fells, went to the brecon beacons for a jaunt, lots of running, cycling and spin sessions in the gym and I was fit enough with good lung capacity for climbing a mountain and off I went to Tanzania with a crowd of friends and a few of theirs and 8.5 days later summited at Uhuru after the most exhausting and mind stretching experience of my life. But I will tell that story some other time. Since then I have returned to london, turned 35 and its all gone a bit down hill since.
Christmas work party, lots of fun and cheer, a few coctails and some dancing resulted in being rugby lifted by one of my colleagues (he lifted about 6 or 7 girls up that night I might add as he was on a bit of a roll!) and somehow I came out with a broken and disclocated rib. Now that should have been a warning sign, but as this started, everyone said, "Well only you sal, it could only happen to you, you duufus, youre so accident prone, never mind, haha!!" I thought the same, why would I think anything else. I made some joke, took the piss out of myself and told a good story that seemed to entertain.
So I pushed through Christmas and New year on heavy (only 30mg codeine) painkillers and some diclofenac and got on with it. Yes a little depressed about feeling broken, single and just 35 but otherwise holding it together!
And then the first BIG accident happened.January 10th, 9.30 getting on the tube at Arsenal, busy rush hour and 'just my luck' got the dodgy doors that slammed shut on me. but this is not where it ends. They slammed, which if you are a daily tube user you know they normally glide shut. If something gets stuck in them they are suppposed to re-open. This DID NOT HAPPEN. They continued to squeeze and squeeze and I couldnt struggle free, nor could I breathe. They had me firmly in their grasp and werent lettting go. Now being fit (see training for Kili!) I did manage to struggle free and pretty much collapsed in the tube. NO, noone helped me - such is the joy and friendliness of londoners! Somehow, persuading myself I was just winded and that it would pass, I shuffled to work in Holborn. By the time I got there I was white as a ghost, still couldnt breathe, was in shock and a huge amount of pain down my right side ribs! A cab ride and 5 hours of A&E more broken ribs were diagnosed, more painkillers, and 'back to work when you can' was suggested. Only this time I couldnt move, I couldnt get out of bed or get to the corner shop. In short it was horrendous. No real help, as I live on my own and willingly admit that Im rubbish at asking for help. The help that I did ask for didnt come. (I'll write further on how you find yourself reasessing a lot more than just your health at these times in your life, and the quality and actual meaning of some friendships are utterly prooven at these times!) So doctors appointments and much stronger pills - tramadol 50mg and diclocfenac, plus constant pain, utter knackeration and a fuzzy head, somehow I pushed myself back to work out of frankly huge frustration and large helpings of loneliness. In hindisght I can also see that there was probably a niggle that something nastier was afoot and denial was kicking in too.
6 weeks and a large dose of pigheadedness and I had got to a point where this years skiing trip was upon me. Id got bronchitis due to lungs not being able to work properly directly as a result of the broken ribs - a common side effect when you break any chest area! So 4 rounds of antibiotics took over from the pain meds and Chamonix offered up some lovely mountain air, a bit of VERY relaxed skiing and general relaxation - time out of my more increasingly pill and pain bound existance.
SO - by this point Ive been taking painkillers since second week of December and its now March. not a day has gone by without painkillers or antibiotics and of course other than the odd run on the snow, no exercise.
But I thought things would start looking up. I was still getting chest pain from the stretched intercostal ribs ahving foreshortened a bit, but nothing as bad as before......... and then I rolled over in bed in April and discolcated and re-fractured a rib or 2! I know, that just seems totally mad! I mean honestly. how I didnt at this point realise that there was a nasty in wait for me I dont know. probably more of that denial and stubborness kicking in! ( and I know this beacuse when I saw my scans 2 weeks ago the doctor was able to age all the different fractures in my ribs!)
So, yes, you've got it already, more painkillers and more antiinflamatories now taking me to the best part of 6 months on the sodding things. tramadol for bad days, codeine 30mg for better days.
no - not finished yet.
So Im just starting to come out of that tunnel, back pain etc all being side effects and I go to a work awards dinner. now again probably because Im a bit more cautious, and a bit more worried about myself these days I automatically did the following, but its not what I would have done if I was feeling fit and strong and confident. I was lifting my right foot (in rather beautiful bejewelled heels) off the ground and as i started to sway back a little grabbed the colleague next to me. Now he wasnt totally steady on his feet, as he'd been enjoying the evenings festivities you might say, so in hidsight grabbing him for stability was a bit of a schoolboy error! I hit the ground on my left side and he came down on top to just apply a bit more pressure on the already pretty fragile ribs! I heard and felt them crunch and in a shot I knew it was bad. That same feeling of shock, breathlessness, blood draining from my face and then the delayed reaction of pain. my brain told me it was bad, my bravado told me to put a brave face on and laugh it off. Now think about it. You fall over in a bar or a club or slip dancing or playing sport or sometimes just even on a loose pavement. You get a few bruises and your ego is a bit embarrassed but how often do you break 6 ribs? Really?
well after a long rant at the doctors to send me to a specialist all of whom said it was utterly impossible for me to have osteoporosis and that I was anything but accident prone, as you know from the beginning of this piece, its what I have got and because of my age and so forth, its really pretty serious.
Its been 9 months of pain and lots of pills and finally I have a diagnosis, but Im jsut waiting for the plan for what next. Its limbo till I hear about that. Next appointment is this week with yet another specialist to find out exactly what they think they should do with me!
The long and short of it is that I have a very rare and pretty dangerous form of osteoporosis. yep - to you and me and anyone elses thats an old persons disaease most of the time! But Im 35 and the variant I have makes it super dangeous for me to do pretty much anything right now.It might be genetic, thats being investigated. I have deficiency in Vitamin D (the sunlight vitamin) I have little and no bone density in my ribs, spine and neck and a small amount in my hips. In short, if I fall I break, if I roll over the wrong way I break, if I was to fall off a horse or on a skislope I will break. Its dangerous for me to have kids right now as I would break! basically pretty much my life the way I have been living it the last 20 years means that Im likely to break, which means more pain, more pills, depression, house arrest a fuzzy head from the likes of heroine and morphine based pills and wondering what the hell happened! Now, generally Im active, Im sporty, Im in to anything you throw at me, I love the outdoors, riding, partying and socialising, walking and clearly Ive climbed a pretty significant mountain too! Im in limbo right now whilst I get reffered to yet another specialist to find out just exactly how they are antcipating on treating me and helping me get stronger. For now my life is on hold. For now Im just eating a healthy diet, drinking less, sleeping more, resting more and dealing with the constant pain of the 6 current broken bones I have, that are desperately trying to knit and really struggling to do so! (6 weeks of healing time has become 4 months!!!)
So how did I get to this point? Well it turns out that in that same skiing accident in feb 2010 I also broke a couple of ribs. No big deal I hear you say, and so I thought too. I took some painkillers, took it easy, and even went off on another long weekend trip a month later and with heavy knee strapping and some painkillers and ibrubrofen gel, thus I managed a few more hours on the slopes, albeight v slowly and cautiously.
I took up a personal trainer and focused on a super healthy diet and bit by bit got my knee to mountain fitness. I climbed a few scottish fells, went to the brecon beacons for a jaunt, lots of running, cycling and spin sessions in the gym and I was fit enough with good lung capacity for climbing a mountain and off I went to Tanzania with a crowd of friends and a few of theirs and 8.5 days later summited at Uhuru after the most exhausting and mind stretching experience of my life. But I will tell that story some other time. Since then I have returned to london, turned 35 and its all gone a bit down hill since.
Christmas work party, lots of fun and cheer, a few coctails and some dancing resulted in being rugby lifted by one of my colleagues (he lifted about 6 or 7 girls up that night I might add as he was on a bit of a roll!) and somehow I came out with a broken and disclocated rib. Now that should have been a warning sign, but as this started, everyone said, "Well only you sal, it could only happen to you, you duufus, youre so accident prone, never mind, haha!!" I thought the same, why would I think anything else. I made some joke, took the piss out of myself and told a good story that seemed to entertain.
So I pushed through Christmas and New year on heavy (only 30mg codeine) painkillers and some diclofenac and got on with it. Yes a little depressed about feeling broken, single and just 35 but otherwise holding it together!
And then the first BIG accident happened.January 10th, 9.30 getting on the tube at Arsenal, busy rush hour and 'just my luck' got the dodgy doors that slammed shut on me. but this is not where it ends. They slammed, which if you are a daily tube user you know they normally glide shut. If something gets stuck in them they are suppposed to re-open. This DID NOT HAPPEN. They continued to squeeze and squeeze and I couldnt struggle free, nor could I breathe. They had me firmly in their grasp and werent lettting go. Now being fit (see training for Kili!) I did manage to struggle free and pretty much collapsed in the tube. NO, noone helped me - such is the joy and friendliness of londoners! Somehow, persuading myself I was just winded and that it would pass, I shuffled to work in Holborn. By the time I got there I was white as a ghost, still couldnt breathe, was in shock and a huge amount of pain down my right side ribs! A cab ride and 5 hours of A&E more broken ribs were diagnosed, more painkillers, and 'back to work when you can' was suggested. Only this time I couldnt move, I couldnt get out of bed or get to the corner shop. In short it was horrendous. No real help, as I live on my own and willingly admit that Im rubbish at asking for help. The help that I did ask for didnt come. (I'll write further on how you find yourself reasessing a lot more than just your health at these times in your life, and the quality and actual meaning of some friendships are utterly prooven at these times!) So doctors appointments and much stronger pills - tramadol 50mg and diclocfenac, plus constant pain, utter knackeration and a fuzzy head, somehow I pushed myself back to work out of frankly huge frustration and large helpings of loneliness. In hindisght I can also see that there was probably a niggle that something nastier was afoot and denial was kicking in too.
6 weeks and a large dose of pigheadedness and I had got to a point where this years skiing trip was upon me. Id got bronchitis due to lungs not being able to work properly directly as a result of the broken ribs - a common side effect when you break any chest area! So 4 rounds of antibiotics took over from the pain meds and Chamonix offered up some lovely mountain air, a bit of VERY relaxed skiing and general relaxation - time out of my more increasingly pill and pain bound existance.
SO - by this point Ive been taking painkillers since second week of December and its now March. not a day has gone by without painkillers or antibiotics and of course other than the odd run on the snow, no exercise.
But I thought things would start looking up. I was still getting chest pain from the stretched intercostal ribs ahving foreshortened a bit, but nothing as bad as before......... and then I rolled over in bed in April and discolcated and re-fractured a rib or 2! I know, that just seems totally mad! I mean honestly. how I didnt at this point realise that there was a nasty in wait for me I dont know. probably more of that denial and stubborness kicking in! ( and I know this beacuse when I saw my scans 2 weeks ago the doctor was able to age all the different fractures in my ribs!)
So, yes, you've got it already, more painkillers and more antiinflamatories now taking me to the best part of 6 months on the sodding things. tramadol for bad days, codeine 30mg for better days.
no - not finished yet.
So Im just starting to come out of that tunnel, back pain etc all being side effects and I go to a work awards dinner. now again probably because Im a bit more cautious, and a bit more worried about myself these days I automatically did the following, but its not what I would have done if I was feeling fit and strong and confident. I was lifting my right foot (in rather beautiful bejewelled heels) off the ground and as i started to sway back a little grabbed the colleague next to me. Now he wasnt totally steady on his feet, as he'd been enjoying the evenings festivities you might say, so in hidsight grabbing him for stability was a bit of a schoolboy error! I hit the ground on my left side and he came down on top to just apply a bit more pressure on the already pretty fragile ribs! I heard and felt them crunch and in a shot I knew it was bad. That same feeling of shock, breathlessness, blood draining from my face and then the delayed reaction of pain. my brain told me it was bad, my bravado told me to put a brave face on and laugh it off. Now think about it. You fall over in a bar or a club or slip dancing or playing sport or sometimes just even on a loose pavement. You get a few bruises and your ego is a bit embarrassed but how often do you break 6 ribs? Really?
well after a long rant at the doctors to send me to a specialist all of whom said it was utterly impossible for me to have osteoporosis and that I was anything but accident prone, as you know from the beginning of this piece, its what I have got and because of my age and so forth, its really pretty serious.
Its been 9 months of pain and lots of pills and finally I have a diagnosis, but Im jsut waiting for the plan for what next. Its limbo till I hear about that. Next appointment is this week with yet another specialist to find out exactly what they think they should do with me!
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