a 69'er

Take one "thin boned" girl, mix with a first night out in months, add friends, shake in a drop of a hug and CRACK, crunch, pop. no heat or boiling required. result: 4-5 more fractures, acute pain levels, swelling and bruising on ribs and palid complexion, no sleep, exhaustion and fuzzy head from monumental drug levels.

I had my doc appointment on Monday with Dr Amy Banks, my new favourite doctor. Shes fab and its such a relief to have one that actually calls and pays attention and checks everything 5 times over. shes aso sending me to a professor fogleman who is the leading and global authority apparently on osteoporosis and he wants to see me in his metabolic bone clinic  -  so good news there.....Then yesterday morning was a specialist appointment in the Royal Free with Dr Beynon. So to even get there, my dad chaufeured me there, taking the nasty and selfishly large islington speed bumps at majorly slow pace due to every muscle in my body going into high alert every time one approached, and for anyone who knows islington it has to be one of the worst boroughs for them and Im sure most are illegally high too, but thats a rant for another day from disgruntled of islington! so, ice packed up so that i could effectively freeze the pain in order to move -  my new trick at getting up or doing anything -  I got to the hospital. It was suggested that I should have realised that with 'thin bones' hugging was out of the question. That totally got my goat! I mean Im not ancient and in a home -  Im young, want some attention and a bit of physical contact, I cant stick myself in a zorb and roll about for the rest of my life, fun as it might be for 5 mins, but dont all of us want a cuddle or a hug or someone to hold us occasionally?! so I burst in to tears in self pity and moaned about the fact that I felt so limited and surely this shouldnt be the life i have to live now. For the first time he told me that he thought that the condition might be reversible to the point of me getting a bit stronger, and it be more manageable......but still not curable. so I guess thats a start. its just a very long slow process of healing and Im back to scratch with the pain and healing again!
He sent me for more blood test and I now have 5 marks in my arm from the gallons they took out of me for the arm length list of things to test........and then he ordered an ultrasound, a bone density scan and complete rest. Now this is where the hospital was mentioned. My parents are both suffering their own ills and mum is off to a specialist herself for a crumbling disc in her spine, dad recovering from prostate cancer and very tired so its just not practical, much as they want to, for them to become my full time carers. we are all a bunch of crocks! so not being able to practically even make myself a cup of tea without extreme effort and agony, it was agreed that my bupa inpatients could be a solution. the tests can be done while Im here, I get company, and also I have a range of buttons and bells now to ring to enable me to get out of bed, drug relief, sleeping pills and all the other potions they ahve me on!

so Im on 100mg tramadol, 1000mg paracetamol, 250mg naproxen, 60mg codeine -  in short Im off my head! Im a bit wobbly on my feet, brain is a bit slow, and typing is interesting I must say (so please forgive typos) concentration is non existent.
Ihave a team of helpers. 2 doctors, Litoo my cleaner, angela my nurse, and 3 other nurses last night that im afraid im too spaced out to remember all their names. they are all lovely and very patient wiht me! and lunch has just arrived.......moule, grilled skate and a salad......yum.

.....and to everyones great amusement and i really cant figure this one out.....Im in room 69 and everyone thinks thats hilarious! ;-0

cant make it up!!!!

well. well well. so here goes, open your eyes wide and sit down -  Im almost back to square one. And all because of a HUG! Im re-broken it seems........back on the tramadol. pain levels back at 9 out of 10, nosleep last night, couldnt turn over, ice packed my ribs and then hot/cold treatment all day. some fresh air in the country and lovely friends looking after me -  thanks Louise and Bob, what a relief you were there........

I was out for the first time in a long time on Friday night seeing a friends private view in memoriam of his wonderful work - artist Max Lowry who died very suddenly almost a year ago on the eve of his wedding to gorgeous Jane from sudden arryhythmic death syndrome. (

http://www.guardian.co.uk/lifeandstyle/2011/sep/05/sudden-arrhythmic-death-syndrome

)
There were all his wonderful friends and family there and the event was simlpy stunning and raising a huge amount of money for the charity CRY. Enjoying catching up and seeing a great group of people. By the end of a lovely evening with them and reminiscing about MAx it came to goodbyes. A few people gave me gentle but lovely hugs, I thought nothing of it. but it seems there can be one slight squeeze too far when you ahve healing bones and osteoporisis! I felt them pop and crack and I took a sharp intake of breath. My friend felt it too and said some to the effect of 'Christ what was that'. I prayed with all my hope that it wasnt as bad as I suspected. but as the weekend has progressed the pain has intensified despite lying pretty much flat and sleep has eluded me.

In short Im devastated after finally making some progress. Im sore and stiff and back in painville! and I was just getting stronger and fitter. its SOOOOOOOO unfair  -  thats just the way I feel. sorry but feeling slight self centred and pityfull and whatnot.......Im gutted.  And its aboslutely no ones fault.. its just the way this thing is, but my god Im going to chase this down with the doctors and specialists. So GP tomorrow and hopefully a new set of ultrasound scans and then specialist on Tuesday.

this totally takes the biscuit, but its life for me right now. I dont want to stop touching people or runing away from things, and I cant believe that such a brief moment come cause such rubbish. I wasnt at work, I wasnt doing anything crazy, I wasnt drunk, I was being careful and for the first time in months letting my hair down a little bit cos I was feeling better and a wee bit stronger and celebrating Max, his art and 2.5 days back at work -  small miracles..........ho hum.......

it was a nice hug all the same!

work rest and vomity!

Braved 2 and a half days back at work this week and bless my team and colleagues -  it seems that they have missed me and were pleased to see me -  thanks guys ;-) Anyway its a Huge and I mean GIGANTIC step forward. Am utterly exhausted physically but my brain seems to be back at almost full whirring speed which is a relief to some degree, although some memory for names seems somewhat troublesome, but then I was never much good at names and always great at faces! sorry folks -  you might have to remind me who you are!

by 5pm today I could barely put one foot in front of the other to leave the office, but that was nice too. and thats not something I would ever have thought I would hear myself saying about a job, that its good to be back and good to be utterly exhausted. It means Im starting to sleep a little better -  as still persistent issue in my world. but its great to have folks around me, Im chattering like Ive just been released from a vow of silence or in a convent for the past 3 months and cant get enough words out fast enough, so again, sorry if you're on the receiving end, Im just so excited to have someone to talk to at the moment........actually a convent is pretty spot on - quiet, and well, you know where im going on that one.........

Wangerama -  my new name for my chineese wonder doc, did some different accupunture on me this week and another small celebration -  drum roll please -  I lay on my stomach for the first time in 3.5 months on Wednesday afternoon - now that might be small fry to you lot but given the breakages and fragility and tenderness Ive had this has been totally impossible until a degree of healing had happened. So more good news all in all  -  now that I can actually lie on my tummy, I can get a massage, and he can have the pleasure of sticking up to 20 needles along my spine and in my knees and ankles to drain me of all the nastiness that accupuncture is supposed to do. Now, I might add that this is in specific relation to a few things.
1) lack of sleeping
2) uncomfortable nights, pain and aches all over body and fluish sweats
3) manic all day everyday headaches that have developed. (see previous blog post re drug addiction!!!)

so I continue with the potion and now have migrated to stage 2 of healing and can actually stretch and do a bit more. I can open doors now without it hurting when I pull or push. I can carry bags, I can drive my car, I can lift smallish things - and dont worry Im not getting overexcited on that one! but yes, progress. so 2 steps forward and only the odd one back with the headaches etc.
oh and finally one last rather weird side effect from all these pills and so forth -  I now get the most awful motion sickness -  cars, buses and even the tube! Im carrying a travel sickness bag, so anyone who has any tips or can send me those awesome pressure band thingys, please do. I'll be a friend for life, its gotta be worth wearing those if it means that I dont turn up to work utterly green and vomity on the phased return/ part time schedule that I have outlined. Ive been told ginger is good for travel sickness as is boiled sweets, any other tips welcome........

....so a lie in tomorrow and recovery prgramme for todays expense. onwards and upwards.

Who Cares.....?

SO, as I mentioned in the last post, Ive been having a lot of interesting conversations with some rather lovely and wonderful people recently. It is usually as a result of me asking one pretty simple question.......why is it that people seemingly desert or avoid you when you are ill, unhappy?

Or perhaps if I extend that, its probably a series of questions such as, should I be so upset that I feel abandoned by some people and that they don’t care, am I just being over-sensitive? Why do I feel that people who I thought would really care about me and who I really care about and thought it was a 2 way street would return my sentiments now that my chips are down?  In fact why do I feel that my life is so much more important or even of any interest to anyone else that they should take an interest in what Im going through, or for that matter why should anyone really care?

 Do I have unrealistic  and ridiculously high expectations of people and how we should treat each other when we need help or kindness? If you ask for help should you really expect to get it?

Do people really care, is everyone self centred and just out for themselves? The simple answer to this last one I believe is that in fact everyone is good generally underneath some fascades and generally do care, but they are just busy and living such a fast life themselves that its hard for them to keep up with everything, and that we are all inclined to be selfish when we have to be but that fundamentally people like to help people, but maybe they just cant cope with trying to do everything and survive as well!!

Ive been told so many different stories by friends about how we let each other down:

• One person told me how when her kids were born prematurely that her 2 best friends just went out and got shitfaced and couldn’t be bothered to go and see her, despite knowing that she’d been through a very traumatic birth and that her babies were in another hospital (not with her) and instead of visiting her just hung out together. It was the biggest thing that had ever happened in her life and they knew she was in a bad place. I will add they got ticked off and did apologise, thankfully, but why would they react like that, it seemed to her to be so out of character of them both. But she was utterly at a loss as to why these 2 old old friends had let her down like this. They knew better and she was devastated.
• Another told me how she had eating disorders and all her friends dropped her as a result of the way she looked.
• Another told me how when her father died, after the memorial service everyone just stopped ringing apart from a very small handful.
• One lady friend of my mothers lost her daughter to cancer and people were physically crossing to the other side of the street in town so as to not have to talk to her.  
• One old colleague of mines father died and no one asked him about it.
• Another friend of mine got divorced and I was the first person in 3-4 years after it happened to ask him how he was and how he felt about it all (I was getting divorced at the time). He told me that not even his parents had ever asked him how he felt about it all.
• When my father got cancer some people stopped talking to him altogether, others offered help and then never followed through when the time came to actually do it.
• When  I was getting divorced certain members of my family and even some of my friends just seemed tongue tied  -  they never asked me how I was or if I was holding up? They couldn’t say the “D” word, it was as if not only was it an elephant in the room but it had stamped on them and told them that if they mentioned it that it would sit on them and squash them.......

....you might laugh but really, it seems that when people are dealing with bad shit that there are a lot of people out  there that however much  try to be good and supportive, its just really difficult, get all tied up in knots and just end up ignoring or even avoiding the subject like its a dirty thing to talk about. Perhaps its not human nature to hang out with the weak and ill and distressed? Maybe its Dawinism kicking in in its most simple sense........humans can’t deal with frailty, illness, depression, weakness or misery in others......its as if it might catch -  like a bug -  they might get it by spending time with that person. Survival of the fittest and all that!  But it happens and it happens to all of us all the time and we all do it to each other, it seems more than we like to believe.

And its relevant as I said, to all aspects that we all have to deal with in life, when anything bad happens, we just burry our heads in the sand because we dont want to imagine that it might happen to us somehow too? So avoidance seems the best tactic, or maybe its just that it suits us to think that they are fine really and that the crap that that person is dealing with (illness, death, divorce, financial ruin, redundancy and job loss etc) really hasn’t happened as it has made them different from how we like them or know them to be and they aren’t the same in our minds anymore and this doesn’t fit with our way of categorising them........

I know that so far as my expectations of others goes, is that I try my best to be the person I would like others to be to me, I know I know, it all sounds a bit holier than thou, and I know that I don’t always and often don’t  get it right, but I have experienced first hand people being very judgemental, Ive experienced being ignored, teased at school, bullying, the whole gamut in fact of all those rubbishy nasty things that people do to you as you are growing up and becoming the person you are today. But the optimist in me likes to think that everyone is good, and that until they are total to**ers to me that in fact I will give them the benefit of the doubt. But I do suppose that if Im prepared to be someones rock and drive across London at 3 in the morning to help them in a crisis that they might at least return some sort of support when I need it. But what Ive learned is that actually people put you in a pigeon hole and can really only see you as type of person. When you stop being that person for whatever reason, they cant deal with it. You don’t fit their catergorisation of friend, rock, drinking partner, running buddy, confidant, shopping partner, boss, goodtime girl, lover etc.

Others have told me that the closer the friends/family often the harder it is for them to cope.......that, maybe, if someone knows you less well you aren’t disrupting their age old opinion of you and who you are, therefore its easier for them to extend the hand of help and compassion to you, to talk honestly with you and console you, as they don’t have the bonds with you that some one who you've been through so much before with might feel.  Therefore you are destroying some memory or basis on which they think of you.

I have also found that  people say things to you because they don’t understand and so they just say something that they think will help but in fact to you the listener it just feels hollow or even empty or like they haven’t listened at all.....one of my friends thinks that this is because people don’t know what to say and so they say what they think they should, or perhaps they try and put it into a perspective that they  understand so as to try and voice an opinion or assumption that might ‘help’ because its what they believe, but aren’t self-aware enough that they are missing the mark, well at least they are trying I guess.  Another friend and I were discussing the quote from Steven Covey....” Most people listen not with the intent to understand, but with the intent to reply “

In essence we all have perspectives on what each of our friends is like, some are the good timers, some are a shoulder to cry on, others the mellow dramatics, others optimists, pessimists, achievers, party animals, organisers, good for a walk in the country or advice, those you always go to in a crisis, your ‘rock’, your best friend,........the list goes on and on and we all have labels if we think about it for everyone we know.  I remember earlier in the year that I was discussing arranging supper with a girlfriend one night, who I hadnt seen in months, she made a point of telling me that she was living very quietly and not drinking, which might be a bit disappointing for me given that I like to be such a party animal......I have to say I was mystified by that, the irony was also rather bonkers given that I was on meds and not going out much myself! I know that Im good fun and known for liking socialising, but I was also horrified to think that I seemed to be so 2 dimensional! Surely she knew that it was not just about drinking and good times, but that I was there for her come thick or thin, that we can be here for the bad times as well as the good – surely thats what friendship is all about?? Isn’t it?

It seems to me that also unless you have often experienced something yourself its very hard to put yourself in the other persons shoes. Its like migraine or back problems, until you have actually suffered from them its almost impossible to really sympathise or be compassionate to someone who is suffering.......its another of those mystery invisible illnesses.......you don’t have dark green spots or a big scar for example -  something tangibly visible to relate to, you just have pain, and pain surely is for wimps! ;-) ok -  so Im being flippant given that actually the vast issue for me the past 10 months has been all to do with pain, but its not until someone is able to find something that they can relate to you in your situation that will allow them to be more supportive, or helpful, kind, compassionate. In fact when we do these things for others we often get a kick out of helping others so why on earth is it so difficult? Thats the bit I still cant work out. What are we so afraid of, surely its not fear or laziness or just being time poor? really ? is it?   its not just being an ostrich and believing that if we ignore it long enough it might go away? is it?

One last thing though is that some people have come out of the woodwork and been wonderful and kind and held my hand and made lovely gestures and continue to do so. Others who were much closer to me have disappeared into thin air (they are the disappointing ones) and then there are a couple who have just come through for me and the depth of friendship I have with those couple of people now are highly treasured.

The bottom line is, we all want to feel loved and important and cared for, and there is nothing worse than feeling alone and without hope and someone to hold your hand......

a banging head......and withdrawal symptoms

so passes another week. and what a week. Ive had some amazing chats with some wonderful people, more on that later, but main update is this.......it turns out not surprisingly that Im now addicted to my painkillers. well not surprising really as Ive been on them for the best part of 9 months and hugely strong at that -  metabolising as morphine and heroine, really doesnt make one surprised! so now Im on a new programme of weaning off those too now! just another thing to manage.

As you know Ive been taking 30 to 60mg codeine and paracetamol (1000mg) and naproxen as an antinflamatory. As my accupuncture has been inproving the pain levels in particularly my left hand ribs -  the really nastilly painful ones Ive been dropping back the 'killers' -  a natural reaction one would suppose. Well, yes and no. I started, not fully realising at first why, to get really nasty constant headaches -  like a really bad hangover, except Im not drinking! Then the migraines have been kicking in on top, every other day........and then there was the fuzz headedness and nausea. I felt low again and sooooooo tired. Like I had ME. I just couldnt get out of bed a few days in the past couple of weeks. Im often thirsty still and seem to be drinking gallons, and still taking all my potions and vitamin pills, plus my spirullina as an extra booster for health and immune system. But I was feeling worse and worse. My mum was an A&E and day case theatre nurse, so when I asked her, she suggested I was going into withdrawal from coming off my painkiller too fast. So basically Im now on lower doses of codeine -  15mg, same paracetamol(1000mg) and the naproxen 1 or 2 a day. Im being weaned!

In addition to all that my hormones have gone bonkers too, and Im getting strange sleeping patterns and quite broken, as well as the night sweats being back. they arent as bad as a month ago, and I believe its all a good sign as my doctor believes that its my hormones just working themselves out, it does mean though that as many of my migraines are hormone triggered that in fact Im now getting double the number of those. Im having accupuncture to try and manage that too, but its going to be a while yet! so, basically good news but more to have to manage! my basket of pills is somehwat disconcerting though as there still seems to be a lot of different coloured pills to take on a daily basis!

honesty......a frank account

When I started this blog I decided that I wanted this to be a really honest account of actually how these sorts of diseases and illnesses can affect you when they come at you like this out of nowhere and that is something that I have been grappling with over the past month, Ive been in a black hole and thats the bottom line. All I can say is thank god for mummy tiger and pop and a handful of friends who have texted, called and kept me going over the past few weeks. Thanks peeps, Im just so grateful to know that you are there and in my life. So heres for the honesty bit.

4-5 weeks ago just a week or 2 after my diagnosis and not long after starting this blog I hit an all time low. I was struggling with how to accept that I have a silent illness that people just frankly cant understand and really generally dont know how to react to. I look ok 'sort of' on the outside. Its not like Ive grown big green warts on my face and grown horns or anything, but because people cant see it they cant understand the constant pain, the utter exhaustion and the deep deep depression and utter lack of ability to look after myself all the time. I was feeling so lost. I was feeling so vulnerable when I stepped outside the front door. I was in a state of terror about being knocked or hurt, or tripping over, was unsteady on my feet, woozy from drugs and knackered from not sleeping! I couldn’t get comfortable, rib pain, back ache. I was having black moods. I didn’t want to communicate at all some days. Others I just didn’t get out of bed. I was too tired and everything was too much to face and it wasn’t like I could do anything fun or nice anyway. I was on my own and miserable. So that is the honest raw truth of it. I couldn’t even lick my wounds. My soul was hollow and bare and there seemed frankly absolutely no point trying to carry on with anything. What was the point? I couldn’t do it anyway. Mybody had effectively checked out on me! Some friends who I thought were very good or close friends have been incapable of even speaking to me about any of this, some have dropped me entirely as they I guess cant cope with ‘something big’ or maybe just me not being myself and bouncy and a rock for them, and then there is all the stuff I wanted to do and the adventures I want to have that 4-5 weeks ago felt so out of my grasp that I couldn’t see a light at the end of the tunnel. Pain can f**k with your mind, so can morphine and all the other stuff I was on! So there it is  -  I was a total mess. And thats when Mummy tiger stepped in with pop and they decended on me for a bit. The new black lab puppy too! (there is nothing a lab puppy can do that doesn’t make you laugh so actually that was a total blessing and i realised I could still smile and laugh!)

I have been abandoned somewhat by my doctors too, although I have finally found a nice doctor in my local surgery who is the only one I will speak to now. She has put me on some different medication  -  my happy pills which made me feel grim and sick for the first couple of weeks and now all good and the painkillers are reduced. The doctors  -  I mean the specialists,  have a couple of different theories and they are all based around my hormones and so forth, but more scarily it seems that the contraceptive that I was taking to manage both migraine and my birth control has played a large role in the development of the osteoporosis. It is becoming increasingly likely that that  was my ‘catalyst’. Now Im no genius, but I know that when I was first put on this stuff osteoporosis was not on the literature as a risk in women of my age. Now it has warnings on it but my doctors didn’t tell me as its only in very very rare cases found so far -  well I seem to be one of them!!!!!!  Im frankly appalled that a drug that is possibly responsible for bringing something like this on is still being encouraged at surgeries across the country. SO GIRLS  -  GET OFF depo provera if any of you are on it.......its dangerous and you might end up like me!  This disease is NOT curable. It is barely treatable as all those drugs for osteoporosis are too aggressive to use and side effects are nasty for someone my age, and all I can do is manage what I have and eat, drink and live the healthiest and careful life possible so as not to break anything......which in my case is apparently all to easy to do.

So the month of August has been about lying low, getting through one day at a time, seeing a few very close to me who I guess can cope with me and bare me not being myself entirely. Ive seen some nice stuff, done some shopping and kept myself going and honestly -  theres that word again -  Im seeing the light again at the end of that tunnel.

Im doing positive thinking. Ive read a book called The Secret (its ace for anyone who is interested!)Ive started meditation to relax and try and keep positive, and Ive also found myself Dr Wang! He is my saviour. He is treating my bones from the inside out. His Chinese medicine goes back 1000 years and hes got me on the most disgusting ‘tonic’ 3x daily  -  imagine sticking your finger in a jar or five spice......try it its similar to what Im taking! The theory is that my blood is bad due to weak and crappy bone marrow which is cancoured by the osteoporosis so basically until I deal with the blood and the marrow nothing will get better. So he’s treating my blood with a 700 year old prescription of herbs and stuff to give me more energy and heal the bones. Its grim and I have 6 months of the stuff to take but he is sure that if I have a bone density scan done in 4 months time that my bones will have improved a lot. Now this is something that the western docs have told me is unlikely for up to a year possibly 2 to see, so Im going with Dr Wang and gonna take my chances. And the power of the mind with these things can be incredible! I feel like Im taking control at the very least and there is nothing worse in these situations than feeling victimised, out of control and not able to help yourself in any way. So Im doing this. Meanwhile my hormones are going bonkers and Im getting all my migraines again. Hes also treating me with acupuncture too to help that and the pain in my ribs with a tens machine that sort of vibrates through the muscles and bones to assist blood flow and healing process. I see him once a week and my bank balance is being slowly drained, but its all in a good cause -  getting me up and running again!

So the long and short of it is that I am improving but its been a real roller coaster and the trough of a month or so ago was pretty desperate – but Ive come out the other side and yes I am getting on with my life in the best way I can now. I have my smile back, Im more myself, Im getting out more and doing a few nice things......I have purpose again. Its great!

another month on....

.....so I know that its been a while since I last posted and really there are a few simple reasons.

In summary  Im still not yet back at work. Ive been signed off by the doctor as my ribs were simply not healing with me trying to juggle working from home and my health. My boss supported the action and so Ive been continuing my R& R treatment -  doing nothing!  So I still have another week or so until the big formal return to my team and the office and even then I will be doing a 'phased return'. The 2 ribs on the right are feeling a lot better and stronger, the 4 ribs down the left side which I call my zip (as they pretty much broke in the same place all down the 4 like a zip undoing!) are improving well, however I still have 2 fractures in what I can only describe as the ribs going across underneath the left breast. (they are also 2 of the same ribs as the 4 broken down the side so a double break in a couple of the ribs!) Now I don’t  know how many people have ever actually fractured or split a rib but I can tell you in no uncertain terms that its not a comfortable process and in fact incredibly painful.....breathing, coughing, sneezing and rolling over in bed just for starters are all pretty sore, and Ive already explained issues regarding travelling, lifting and generally doing anything.

But I will say that Im now a bit more independent. Im driving again......a huge deal for me as of the last 2 weeks, Im back cooking meals and even baked bread the other day  and doing a few things around the house and can even carry a few shopping bags of groceries now. Im getting out and walking to get some air and stretch my legs, and trying to do a few nice things to get some stamina back again  -  galleries, theatre, and of course some pampering and retail therapy. Im off the booze generally with the odd exception of a glass of vino or spritzer here and there so my liver at least is probably thanking me somewhat. The painkillers are still part of the daily routine but Im managing to get down onto more reasonable levels now so Im not on planet Zorg anymore! so all good progress I guess.

Other smaller changes to everyday life include  being a bit more practical about my choice of shoes on a daily basis and generally relieved that with it being summer that means flipflops and pumps so I can get away without the heals for a bit (although I do miss them and look at my collection longingly in the bottom of my lovely new fitted wardrobes (some more of the progress Ive made with all this time Ive had!) I will say though that Im not a full on Imelda but prob not far off and still have no claim to a pair of Jimmy Choos or Louboutin’s  -  hint hint its my birthday in December!.)

And,  very unusually for me Im not haring about at 100 miles an hour anymore. I have had to slow down, in fact read practically stop! So you can imagine that when you are used to hooning everywhere, full speed, throwing myself into everything, game for everything and up for trying all things new and exciting, that has been something of a challenge and really quite a change! Ive watched entire box sets and several dvds and now officially stroll along the street! No where is reached at speed and my journey times have doubled to get anywhere as sitting down for a bit like an old biddy is often required! However I have been able to do a few practical things so that the last 3 months haven’t felt like  a total void and vacuum.  Ive redesigned my ground floor with an architect and chucked out some of my wardrobe as well as some stuff in the garden done by a builder and a carpenter fitted new wardrobes........but no Im not doing any sport, Im not running or riding  or swimming or anything that will affect the very delicate healing process that I now face with the osteoporosis so thoroughly slowing everything down so much. I cant afford to jeopardise any of the time I have spent over the last 3 months healing by doing something even like dancing an slipping over which might set me back again. Ive had to learn to sit on my hands at bbq’s where antics and games are being played and say ‘no not this time’ a lot more. It makes me think of that guy who said yes to everything for a year........well Im having to find a nice way of saying no to a load of stuff just at the moment.......but all in good time huh?

So in summary a bunch more weeks have slid by and this year of 2011 has continued to be strange and i am still learning what I can and cant do and how I have to adapt my life to accommodate this now and live with it without it hampering my  life and attitude too much. every day is a new day........

look both ways........

From toddling age we are all taught to look left and right, keep an eye out for danger whether it be crossing a road, climbing stairs, jumping, running  leaping, and in fact just existing in the modern world. Its about being streetwise. Its about foreseeing times that might yield danger, crossing the road when there’s a dodgy gang, pausing to check traffic lights and zebra crossings, you know where Im going with this I don’t need to list them all and there are so many of them. Well this is all good and well, but it doesn’t account for the rear attack......the time that someone creeps up behind you and mugs you or darkness sets in and you feel slightly vulnerable and you want to see whats behind you, but for all your checking and looking both ways there are times when it gets you right in the back. It lurches at you and takes hold out of nowhere, an event you couldn’t have forseen, avoided or even had time to step back or indeed run away from and that is the way of diseases. They grow and develop inside you quietly, benignly and grippingly, they drain you and in my case leach your bones.......they envelop you until they have got a firm and drastic hold and then one day they jump out of the dark and yell like a strike of symbols so deafeningly in your ears that you lose all sense of time, balance, understanding and comprehension. ‘WHY ME’ yells back or ‘I don’t understand.....how did this happen, what did I do wrong?’ Or even.....’are you sure you got the right person?’ (that last denial one is a real sucker!)

But you cant know it and it happens all the time, every day to millions of people, whatever the condition or disease, be it cancer, ME, MS or even osteoporosis, the list is endless sadly. Its just not fair, its unjust.....but it happens. These things are somehow so much more than, to carry on with the previous analogy, just crossing a busy street and looking left and right to check for oncoming vehicles.......its more than being engulfed in a crowd and having your pockets emptied. Its a huge truck coming full speed out of the fog with no time to slow down and BANG.........all time stops.

I read an article this week by Mike Marquesee about his struggle with a form of haematological cancer. He talks about the” roller coaster ride of symptoms treatments and side effects....”.  He continues on to talk about the heightened awareness of both our intricate dependence on others and our deep seated need to retain dignity and independence. These don’t always sit comfortably together. Nor do pity and support...they are also very opposite beasts. I related to his point that ‘restrictions in capacity and mobility are hugely frustrating and relying on others to supplement them is not a straightforward business.....engaged in a never- ending  battle for autonomy’.

All this hit me with great significance as I read, as the past 2 months have left me under house arrest, not able to drive, carry my shopping, go out anywhere in big crowds, travel in any capacity than a constant state of fear(the confusion and getting lost from all the pills aside!), staring at the fridge in dismay and complete lack of either enthusiasm or even energy to muster something from those icy depths, and the woolly headed memory and getting half way through a sentence to suddenly realise I cant remember what the helI I was talking about!  I cant cope with pissy customer services people (actually can any of us?), I cant deal with doctors, small day to day things have become overwhelming...... I have been caught in a war of “la resistance vs l’acceptance” in getting to grips with facing this, on the one hand and accepting its path and course now in my life, and whilst the change in itself is not the big problem (I usually embrace change), its the fear, pain and current self pitying belief that Im somehow not of much value now that I find myself fighting and then giving in to and back to fighting again........all the time trying to retain some sort of autonomy and independence and frankly just a bit of self  worth!

So there we have it, you must always look both ways, it reduces the risk that something  might hit you or knock you down. Its good sense. Its the least we can do when all said and done there may well be a path pre-ordained in the stars that has your journey mapped out and without that crystal ball looking left and right is the best we have.

a double yolker!

I love duck eggs and the other morning I was doing a ‘proper’ breakfast for myself, such is life now that these things have become small highlights of my day and obviously my diet is important as well as not skipping breakfast which has been somewhat normal for me in everyday working life. I have also taken to thinking about my next meal whilst eating the current one, simply because so little is happening in my world at the moment and food has become something of a point of interest, whether it be because there is nothing remotely of yumminess in my fridge, its vitamin and health values or just out of sheer boredom.  Anyway, out came a double yolker! Now I know that this is not only quite unusual and the practical and non superstitious of you out there would just say that 2 little ducklings might have come as a result for one lucky duck had it not been in my fryingpan, but  I found myself wondering what superstitions out there might have just landed in my lap...could this be some sort of sign.... and yes I know, maybe Ive lost all senses now, but that was never going to be very difficult really, and given my new status and rather random trains of thought these days, I do seem to be looking for answers in everything....

So I hit the www in search of some sort of enlightenment!

What is the significance of a double yolker?.........

1)      According to norse mythology, it means there will be a death in the family.

2)      Apparently  it means that a previously infertile couple can expect to become pregnant, most likely with twins, or to become pregnant multiple times.

3)      The pre-medieval Anglo-Saxon tradition that a double-yolk foretold a wedding (the double yolk in a single shell representing the union of two people as one.)

4)      Most traditions hold that the egg is a symbol of life and fertility, or something relating to the life cycle.

5)      Plentifulness and good fortune in the wiccan religion. Expecting one thing and getting two fold what was expected. It foresees good things to come, usually romantically or financially.

Well, not overwhelmed with number 1, 2 is pretty useless to me right now, 3 would be nice but still somewhat lacking on that front given zero man in life, 4 similar to 2 except that I can run with the lifecycle thing and if in my case that means that this new phase of my life might be a different direction etc that might bring me new and unexpected stuff, then I can perhaps go with that, so Im really probably best of with number 5. Ive definitely had 2 fold more than I was expecting by getting a horrid bone disease that could see me severely debilitated in but  a few  years, but it might also mean that my life is somehow changing for the better in some way that is beyond e at the moment and might just be a little confounding at best right now,  and if it does bring better finance and prince charming then all the better! I do feel that I have had more than my fair share of rubbish to deal with over the years and this has somewhat knocked me well out of the playing field recently, so if as number five says that good things are to come, then lets get up and have em!

A mothers love (and next steps in my treatment)

So mummy tiger protective instinct kicked in this week. Its nice when a parent does one of those full on guttural growls in defence of their offspring, you see it on nature programmes all the time, and when I am said offspring, even better. Let me explain.

So, as you already know I was awaiting my next appointment this week for latest update on random disease that has thrown its dark shadow over my life in the past few months. I saw my consultant Dr Baynon last week and he was very concerned about the rarity of my condition, the correct treatment and was very focused on putting me to the top of his list (nice but even more worrying as it indicates that even in the most positive frame of light that its probably a worse situation than you were allowing yourself to believe!), and he was also the one who had pointed out actually how precarious my current state is, hence last weeks wobble and tantrum fit with the boiler. So there was I expecting an appointment through, following a referral from my doctors’ surgery. Now I need to explain that at this point I have now run out of my corporate Bupa outpatients cover so have to wing it with the NHS from here on in, desperately hoping that actually my condition is, as I was lead to believe, significant enough and worrying or intriguing or whatever checklist priority it is this week for them to actually see me inside of the next 3 months before telling me what the  jiggery pokery and goblin magic comes next! That might sound selfish , but actually Im in limbo and until I know what Im dealing with and what the next steps are and the treatments might be its like waiting for eternity to come and clop you round the head after bouncing out from behind a tree like tigger in a great fit of suprise! Im also a project manager by trade and that means I like plans, next steps, logic, information and good reasoning!

Anyway, so Dr Baynon, aware that my doctor surgery had really not been at all helpful or particularly reactive up to this point (I was in tears regaling previous appointments to even get referred),was pretty horrified by the dismissive bollocks that Id got from one particular senior doctor in the surgery,  had then promised to speak to him personally and get my referral within the week. Well I was not optimistic on his behalf and it seems I was again proved right about this particular doctors lethargy and responsivity. However, I called the secretary to find out how things were going this Monday and Tuesday, nothing, no fax referral (you need the referral from your local doc to get in to the right consultants again through NHS even if you’ve already paid thousands privately to get to that point).  I finally called Doc B. Well  -  all I can say is he did call me back but it was very confusing, his previous very positive demeanour seemed to have evaporated overnight and he seemed reticent in actually answering any of my questions. What he did say though was that I was no longer to take any contraceptives, and that booze to be reduced as much as poss, take vitamin d super pills (they are like a 20000 unit to a typical daily 400units in standard vit pills!) nothing more. I was utterly confused. What about treatments and other specialists he’d mentioned........just wait for a month! (but no more explanation than that!)

So I called my mum, the lifeline I mentioned in a previous note. She’s an ex nurse, hospital theatre nurse and patient representative so she’s seen it all and a pro at dealing with consultants. Her response -  “he’s fobbing you off, Im not happy have you seen a Endocrinologist” (a whattee what?) -  “Erm no.........”.

Right then!!!!!!! (yes thats where I get it!!!)

Long discussion later and plan and numbers sorted she’s on the tigress mummy warpath  -  her cub is distressed and shes looking for answers!! Next day she calls me , “ Ive left him a message!” ........ end of evening .......”no, still no call back Im very disappointed I think this is the horrid problem with moving from private to NHS, Im appalled!” (Im not sure what to say) ......so more waiting and so I just struggle through a day at work today (whilst Im still signed off sick and unfit for work , Im on a phased return approach and its great cos I actually get to hang out with real people other than the cat and talk about stuff that’s not just me, and go for lunch like a normal person, just with a lot of pain and get a good telling off for doing too much which is quite standard in my world during these episodes!) 2 fab girlfriends cooked me dinner, natter natter etc etc, you know how girlys can be and then mum calls.......

“darling, Ive just spoken to him, he was lurverly!!” (note significant change of tone!)

So, this is where we are now:  he hadn’t called back as it turned out he teaches local doctors surgeries and clinics about new info on conditions etc. I happened to be the case study and the doctors surgery this week and only last night just by some weird fate happened to be my bunch of reprobates in Islington. He apparently explained how extremely rare my case is, the obvious rarity of osteoporosis in a 35 year old woman and that this is not a normal strain/ form whatsoever. (the 2  others being older persons post 55 and post menopausal!) Under no circumstances should I be treated with traditional osteoportic drugs as these have not only horrid side effects, but are ineffective and dangerous as bring on other horrors such as infertility and such nasties! No contraceptives, no steroids, no toxic drugs of any description! I have to wait for contraception to clear my system and only then can they test for hormorne issues that may be a cause. I also need to give my ribs further time to heal better before any form of ‘hardcore’ treatment is even considered. He had consulted with endocrinologists it turned out, (tiger  mummy v happy about this in particular)  at the Royal Free as well as a bunch of other reputable knowit alls about osteoporosis, and they had advised this in the immediate term.

Now, it also seems that despite Dr B having a 12 week waiting list on NHS, hes going to see me in 2-4 given my ‘special’ case. (mum said he actually seemed excited to have my case which I can only think must be positive!) So all our worries about private to NHS seem in this case to be needless, but it is a very true fact that the beurocracy involved is maddening and he said that he was enormously frustrated himself by it to my mum! Its also a sidenote that he flamed my doctor for not responding to his request for a referral last week which still hasn’t been done, so its reassuring that there really are the most wonderful doctors out there,  and that despite the nightmare blockages that the system might cause,  they will go above and beyond to sort things out and this one really did do that! I feel very very lucky indeed. Thank you Dr Baynon.

So its no conclusion yet, I do have some vague idea of the next month, and its just a waiting game for ribs to heal, toxic rubbish to expel from my body and then and only then can we proceed!

So maybe now I will start getting more than 3-4 hours sleep a night, and actually despite everything, the wheels are turning again. Im taking some extra magnesium and calcium supplements as well now on top of all those painkillers and probiotics. More progress in that my bupa bills are also being assessed and Im also managing to vaguely do some sort of job, albeight conference calls, emails and the odd office visit for a few ‘critical meetings’. Its important for my sanity -  really, Im climbing the walls and there are only so many dvds one can watch.  Im being well supported by wonderful friends. It kinda sucks that its raining though, a tan would be a nice offset to some of this! What more can I say........? thank you all for all your wonderful mails, comments, texts........xx