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. 

preventing osteoporosis - a stitch in time......

Over the past number of months whilst Ive bee largely incapacitated, Ive spent a lot of time wondering if I could have avoided this. The simple answer for me is probably a combination of yes and no. Ive always had a healthy diet, in fact grew up with a hippy vitamin, bran eating mother who fed us nuts and raisins and not sweets and crisps! so in general, that and the sporty outdoorsy lifestyle I have always lived, there isnt a whole lot I could have done to avoid this had I been more aware that this is NOT just an old persons disease. I did smoke for a few years, and did my fair share of partying hard at uni, and in the early years in London, but didnt everybody!? I wasnt any different to my friends, and certainly no alcoholic. I also never did drugs or pills or any of that stuff, just wasnt my scene, and can happily say that Ive NEVER done a line of coke, (I must be in the minority on that one!). so when you look at general lifestyle, diet and fitness, Im in good shape. HOWEVER, and this is where there is the BUT......you can never tell what your genetics are programmed to do. I had no idea Ive probably had a vitamin D deficiency for years, leading to lack of K and C and calcium being absorbed into my bones......I cant help wondering if all the bruises Ive always had have been some sort of indicator of this as they are certainly linked!? anyway, I digress. I chose to take a contraceptive that when looking at the paerwork in the packet, made no indication of this disease, only in women still maturing was there a warning (18 -  26 years old), so taking this at 32 was not deemed a risk.

I can say though that the more I research and read discussion posts by other sufferers of this disease, it does seem to be linked with a number of other conditions........coelic, chrones, gluten intollerances, hyperpararthyroidism, vit d deficiency, the list actually goes on and on.........diet is a big factor......cut out the dairy (its a myth that drinking a lot of milk actually helps significantly -  if you dont have the vit d, its actually bad for you it seems ) cut out gluten, eat only fresh fruit and veg, nothing prepackaged, dont drink, dont smoke, dont eat too much red meat..........etc. etc

I have copied a section here from one of my blog/ discussion sites for reference to anyone interested in keeing their bones fit and strong, so that you are preventing this at the very least in later years, or losing 5 inches in height, breaking bones just by brushing your hair or bending over, having hip operations, constant pain and tiredness, not being able to pick your kids up, worrying about falling, dropping out of various activities because you are terrified to break, stress and anxiety, fertility problems, incapacity, being in a wheelchair because you simply cant walk,  ......these are all very real issues on a daily basis for the large percentage of sufferers!!!!

"Because it is hard to replace bone that is lost, prevention is key. Beginning a lifelong commitment to exercise and healthy nutrition while you are still young reduces your risk of developing this condition later in life. Remember, you are never too young to think about preventing osteoporosis.

Exercise increases bone mass before menopause and helps to reduce bone loss after menopause. Bone strength increases with regular exercise -- to help prevent bone loss weight-bearing exercise such as walking, low-impact aerobics, or tennis work best.

An adequate calcium intake is essential in the prevention of osteoporosis. Good sources of calcium include dairy products, leafy green vegetables, nuts, and seafood. Most women get only about half of the calcium they need everyday so taking a calcium supplement is often advisable. The best form of calcium for preventing bone loss is calcium carbonate. If you choose to use calcium supplements, it's important that you understand that the body can only absorb up to 500 mg of calcium at one time, so you will need to divide your dose if the amount of calcium supplement you take exceeds that amount.

Vitamin D is necessary for the body to absorb calcium Milk that is fortified with vitamin D is one of the best sources. Sunlight also is an excellent source of vitamin D. In fact, being in the sun for just 15 minutes a day helps the body produce and activate vitamin D.

Calcium is important throughout a woman's life, although the amount necessary varies with age.

·         Children from ages 1 to 10 require 800 mg of calcium daily.

·         Teenagers need 1200 to 1500 mg of calcium per day.

·         Women between 25 and 50 need 1000 mg of daily calcium before menopause and 1500 mg after surgical or premature menopause.

·         Women over 50 require 1500 mg of calcium if they are not taking estrogen and 1000 mg if taking estrogen.

·         Pregnant or nursing women need an additional 400 mg of calcium daily.

Younger women who experience the symptoms of premenstrual syndrome (PMS) may be pleasantly surprised to find their symptoms are reduced by employing these osteoporosis prevention techniques. Studies show that calcium supplements may reduce or prevent up to 50% of all PMS symptoms, and exercise is often effective for reducing PMS symptoms.

Bruising is an indication of lack of vitamins D, K and C. These are all linked to uptake of calcium in the bones, so all are impacted when one is depleted!

so what can you do in your diet to affect all this?

There are foods that rob your bones of calcium, such as,
Foods to consider avoiding
 -1%, 2% and whole milk and products
 - Meats with 96% or less fat
 - Red meats (Increases calcium loss)
 - Hydrogenated oils such as stick margarine, and when listed as an ingredient in foods
 - Food with high butter fat and other animal fats
 - Hot dogs, hamburgers
 - Salt (a major bone robber) or foods prepared with salt
 - More than one cup of coffee or other caffeine beverages a day
 - Sugar (a major bone robber)
 - Chocolate
 - Soft drinks due to high phosphorus content
 - Alcohol (it inhibits calcium absorption)
 - Carbonated Beverages
 - Caffeine (increases rate of calcium loss through the urine)
 - Smoking

Also keep animal protein consumption down, it increases calcium loss.
Some foods to consider eating more often : (1-5 servings per week recommended) - Salmon and other fish, including the skin and fat (Research suggests this fat (EPA fat) has the ability to raise HDLs. (good cholestrol)
- Fresh fruits (good source of boron to aid in calcium absorption)
- Sesame seeds, Dried fruits, unsweetened, especially apricots, dates, prunes
- Low fat tomato sauces and pasta
- Peanuts, walnuts, almonds, peanut butter
- Grape juice, Grapes, especially red grapes, Grapefruit, especially pink, oranges, raisins
- Bean and, chickpea dishes and dips (great source of boron to help increase calcium absorption)
- Tomato salsas, Mineral water, Non fat yogurt, Skim Milk
- Sardines (Atlantic with bones), Pink Salmon (canned with bones or fresh), 
- Bok Choy, Turnip Greens, Brocoli, Non fat Baked Beans, Kidney Beans, Okra, Squash, Spinach, Carrots, lightly cooked, Pumpkin, canned or cooked, Sweet potatoes

 

a serious warning

I have refered to this in the previous posts but this is a quick update and a pertinent but sharp warning to anyone on depo provera as I was.

Now this drug is still prescribed as a viable contraceptive, and whilst it works brilliantly in preventing pregnancy, and in my case also controlling my hormone levels (eostrogen) which were increasing the number of severe migraines I was getting a month (about 8 a month), this injection, carried out quarterly, does in fact have a black box warning........NOT something I was aware of when i was prescribed it by my doctor 3 years ago!

...the black box warning states (ref wikipaedia)

Black box warning

While it has long been known that Depo-Provera causes bone loss, it has recently been discovered that the osteoporotic effects of the injection grow worse the longer Depo-Provera is administered, may remain long after the injections are stopped, and may be irreversible. For these reasons, on November 17, 2004 the United States Food and Drug Administration and Pfizer agreed to put a black box warning on Depo-Provera's label.^[34] However, the World Health Organization (WHO) advises that the use of Depo-Provera should not be restricted.^[35][36]

It is unclear whether the bone density loss associated with Depo-Provera use is reversible, and if so, how completely. Three studies have suggested that bone loss is reversible after the discontinuation of Depo-Provera.^[37][38][39] Other studies have suggested that the effect of Depo-Provera use on post-menopausal bone density is minimal,^[40] perhaps because Depo users experience less bone loss at menopause.^[41] Use after peak bone mass is associated with increased bone turnover but no decrease in bone mineral density.^[42] However, as of 2006, no study has directly examined fracture risk in post-menopausal women who have used Depo-Provera; therefore, the risk is unknown.

humpty dumpty sat on a wall.....

and as you all know from the nursery rhyme, he had a big fall and none of the kings horses nor the kings men could put humpty together again. Well  -  that sort of sums up how I have generally been feeling until the last week or so.

I left you all last on my way for an ultrasound. 3 new fractures were discovered but there was one key difference this time -  they were stress fractures and not traumatic ones (traumatic are incurred by sharp/ heavy impact such as a car accident/ severe fall etc). Now I say not traumatic -  the pain is still the same and the incapacitation, however this is a slightly positive if somewhat depressing situation! Through the course of repeated actions, such as various people hugging me goodbye -  the depressing bit that I can break so easily   (and not bear hugs I hasten to add!)  - it seems that this is enough to create stress on my ribs that are already, as humpty knew so well,  weak, and once cracked, somewhat impossible to prevent from crisis and further breakage!  It does mean apparently though that they might not take as long to heal. good news. 

So the grand count to date this year on broken ribs( or should I say the last 18 months) has been a record total now of 21 broken/ fractured ribs. Some rebroken, from previous incidents but overall a whopping 21! can I have an entry form for the guiness book of records please?

Following my ultrasound and a small incident involving Helen one of my girlfriends feinting in the ultrasound room whilst she escorted me, and then borrowing my bed for 5 mins to recover, I was back to recovery mode and pampering by all the nurses and my lovely visitors.

Following day I was carted off to Princess Grace Hospital (where the bone density scanner or dexa scanner is) and they zapped me again to see if things were worse, the same or not. I was told in no uncertain terms there was no point in this scan as there would be no improvement, and they wouldnt normally do this before 12 months after the previous. I had had to point out to my consutant that a) Im not a normal case ie 75 and b) I wanted to check that I was on the right track and that things werent still getting worse! He agreed and so off I went. Now, Im no pro but I had the print outs with me from my previous readings, and I managed to decifer from the new set that there had in fact been the smallest of improvements in my bone density. Frankly something of a miracle -  must be wangerama's gunge that Im taking of course!  This was later validated by Dr B! Anyway, it seems that my arms are fine a bit low but not bad and not likely to break if I fall. My hip is still pretty dreadful and the femeral head and neck which are the top of the thigh bones where it connects to the hip socket is pretty dire, but the rest of the pelvis and femor are very slightly better than 3 months ago -  yeay! Then on the spine they take 4 readings. basically from top of spine in 4 chunks down to where it meets the pelvis. L1 is at the top and L4 bottom. L1 and 2 have improved a bit -  yeay! L3 not great and L4 utterly horrendous readings.
SO what does this all mean? basically if I fall over I could easily break my hip like an old granny or my spine and be left in any number of unthinkable states, really doesnt bear thinking about. But it is slightly better and the baynon was gobsmacked. He thinks the chinese medicine will poison me and is a bunch of tripe.....but he would.......and hes now utterly convinced that, sadly for me, it is predominantly down to the rather ghastly contraceptive that I was on. (It turns out the world health org wanted to ban depo provera but realised that it was a great way of preventing too many births in 3rd world countries, so didnt and despite all the risks they continue to prescribe it. Frankly Im utterly shocked and will be considering some sort of national/ political rant to that effect when Im stronger! anyone want to join me, please do!???) I seem to be one of the incrediblly rare cases in the world that this can happen to and the numbers and probability is low, but still! they know the risks and still do nothing to stop it!

So, to continue. I left hospital on the Saturday morning and my dear brother managed to get me and my rather upset felix cat, still intact both, to my parents place in Suffolk for further Tlc. Louie (the cat) had a cat holiday chasing mice and hiding in bushes and shubbery for 10 days and didnt want to come back to london -  frankly I dont blame him, and I was tucked up in bed for r and r. I was also very lucky to get the indian summer weather, so I was also set up on the sun lounger in the garden for maximum vitamin d absortion! (and a nice autumn tan to go with)

Blood tests came back on Wednesday and were all pretty positive too. My horribly low Vit D deficiency it seems has been stabilised now to more normal levels, but I have to continue taking 20000 units a week for the forseeable future. (most daily vit pills have about 400/d just to put that in perspective!). the big news on all that though was that in fact my hormones are relatively normal, which is great news. there were a few anomalies, but apparently thats sort of normal!

All in all the tests have been a step in the right direction and I have to say that when I spoke to Dr B this Tuesday again in London, and he compared me to a cracked egg (hence the humpty reference) it seemed like a good way of explaining. Basically you lot are like a nice happy solid egg with no cracks -  the type we all check for in the egg carton, and Im one of the cracked ones that if you end up with one, you escort it home very carefully and then chuck it in a pan asap.........poor humpty! however it does seem that the kings horses and men seem to be making some progress in medical science since the rhyme was written and I actually, albeight VERY VERY slowly, might actually be able to glue my cracks back together again and be almost the same as the rest of the egg fraternity! funny how only a couple of months back I was banging on about having a double yolker! hmmmmm definite egg theme emerging here!

The tens machine has been my saviour and the endorphin rush you get from it is wonderful. that and the extra pain relief it gives. I was using on my ribs and my back and I tell you, for anyone who suffers nasty back pain or problems GO AND GET ONE. they are fabulous for back spasm, pain relieve, migraine, all sorts......

Im still on mega 'killers' but have reduced the tramadol a bit. Im moving about better, can carry a few things, can make myself food and stuff a bit better now, but I still get my good days and bad days and the one ever consistent thing that really hasnt changed is my insomnia......its currently 3am and Im wideawake club! ho hum.....had  yummy dinner cooked for me by nins and candi tonight though, and some green soup with every vit d vegie on the planet in it -  thanks Nina......Im gonna be popeye soon!

but the key thing is that my state of mind is more positive- these test results have given me a degree of hope that I can make good progress now and over time live a more normal life - whatever that may be, certainly not one involving extreme sports anymore, dancing on table tops in my ski boots or even going crazy on the dancefloor! Art, culture and golf seem to be the way forward! and you never heard that in the nurery rhyme did you.........POOOOOR HUMPTY.

barbie girl 69

so Morphine. you just gotta love the stuff. Im on as you know massive pain killers and got a team of nurses now buzzing around me, food in 3 course meals being bought by a great kitchen, flowers arriving from very generous souls, magazines, chocolate and grapes (of course) and a bed that has fab buttons up down back and forth, you name it. but non of this sadly has eased the excruciating pain levels again. despite a turret of pills which whack me out, I was still begging for more 'killers' yesterday when some of my girlfriends were visiting.  so a rather dishy young house doctor finally agreed to give me a shot of morphine by mouth to 'take the edge off'. and wahey did it do that. Kabuki told me I became a lot more animated and by the time Jan and Martyn arrived I was on planet zorg singing barbie girl and talking utter gibberish.......I cant tell you what I was gibbering about, but they seemed to think I was quite funny and probably about as bonkers as usual!

the boys found the rather fetching white paper knickers too that im supposed to wear when I finally get sent for my utrasound / scan and thats when the fun began.Jan got out a pen and stole a marker from the nurses and I was created a new line in lingerie. Needless to say the nurses were very impressed. I think having someone on the ward who isnt 105 is quite nice for them and they are liking all my lovely visitors too.

Vivienne Westwood eat your heart out!

I have no idea where barbie girl came from but apparently Im definitely good at that and I admit i even know a few of the words, so perhaps its a fitting nickname given my fuzziness at the moment. obviously its utterly 'hilarious' that im in room 69 too, Im still a little unclear why though!?

 so where am i on progress -  a bath this morning proved something of a challenge but achievable. i just had to lie flat for an hour afterwards. the physio has bought me up a tens machine which is my new favourite toy. I've two pads on my back and 2 on my left ribs and a small circuit of electricity vibrating \ pulsing through my muscles  and bones. as it says in the book that comes with this little star gadget.....the tens works by a method of pain  gating where the stimulation blocks messages to the brain telling the body it is in pain and then encourages the brain to produce painkilling endorphines. for anyone with back pain, arthritis or any number of other complaints, this is a little miracle worker and so easy to use. you can wlk around with it on.......Im so getting my own.

so laura my phsyio will be back at 3ish and maybe a few tips on how to try and keep things going despite my return to incapacitation......fingers crossed. the scales also told me a bit of a scarey story this morning but I guess thats all the chocolate im eating and the general lack of movement.........im gonna be on the dukan diet once this is healed I can tell you!!! barbie was certainly never that curvaceous or a fattie and im def in the first of those camps.......maybe not such a bad thing though! ;-)

right -  seems im being taken off for my ultrasound........lets see how many of these babies have fractured this time!

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!