....like a seive!

.......and Im not just talking about my memory!

Another day another 20 accupunture needles! I feel like a pin cushion, or even, yes, you got it, a seive! Today the wangerama dealt with recent batch of sleepless nights, a fresh and snotty cold and sinus pain and finally a bunch more headaches -  the migraine variety! The number of those have increased since Ive got my hormones back, so more regular now on  the monthly cycle, but there are the random ones too!

Am back at work part time now, brain busy and feeling more positive, if somewhat tired. Body is getting a bit stronger on a daily basis though and my stamina is definitely improving. Only thing I seem to have noticed is that Ive normalised with my pain levels. It is constant in my ribs, and cold days I do notice it more, but Im pretty stuck on current level of pain killers, less and I cant do much, more and I do too much as cant actually feel any pain. I sort of need to be on the knife edge between pain and not , so that I can actually manage what level of activity is realistic and feasible.

Yes, Im starting too to fantasise about running again, doing some exercise, maybe even some pilates classes, as, with every day the ribs heal a tiny bit more, the stretch is less, the stamina is better and so life feels a tiny bit more normal. I read daily updates on Inspire about peoples' cases of OP and how they suffer and how they manage. I do weirdly seem to have a ridiculous record of breaks in a year.........21 seems to take the piss a bit in regards to others stories. 1 is bad, but 21 unreal......and thats my story. I feel the bubble ever more around me.......a sort of surreal and parallel universe.......where did this year go, how have the months slipped by, well I suppose the fog of killers and pain and spaciness from all the drugs is enough but it does all seem like it sort of happened to someone else. isnt it funny how the mind can trick the body. Im actually no better really than a few months ago. my spine readings are still horribly low (-3.2 T score -  thats pretty bad by the way as many with this disease have readings around -2.5! -4 is even worse and more rare!). My bone density is basically shocking still and the fact that you can squeeze me a few times and I break is pretty scary, however, the one HUGE difference for me now is that the pain of so many breaks is finally relieving itself. Assuming no more accidents, bear hugs or drunk colleagues fall on me then I should be alright. Im avoiding the rush hour traffic, got great at negtiating round pissed people, no bicycle action, horses, sports or wayward dancing! and all this alone is allowing me to feel a bit more 'normal' a bit more functional and like actually life might now beat me on this one.

A close friend recently compared me to a fine bone china......I like that comparison......a fine and somewhat fragile cup and saucer that is handled with love and care......and NOT left on the shelf just to look at but can still be used daily if you just handle with a little bit more thought and attention.......you dont bung it in the rucsack, picnic basket or jam it in the dishwasher......but there is no real reason not still to use it and enjoy the tea in! so a mental shift from humpty dumpty to fine china is I think a more positive and fitting approach.

Wangerama (Dr Wang my chinese doctor and accupuncturist) is funny. He told me I look young and vibrant today and he thinks Im very 'powerful'  -  his words not mine! he basically said that he thinks the fact that Im getting on with work, that Im still living life, that Im out there and not being a victim is the best thing possible. If you sit and moan and feel sorry for yourself instead of just getting on with it, not only is it all a bit depressing, and an ever decreasing downward spiral but its a negative state of mind that will never help -  (I know it all sounds a bit obvious, but its not always the easiest thing to do!). He told me the fact that Im back at work is massive as many of his clients with ME/ MS/ stroke victims, bone cancer and disease and even fertility issues, just give up and allow themselves the excuse of the illness/disease to sit about and feel sorry for themselves. His belief that positive mind = positive body and thus faster progress and recovery is the key. Its reassuring to hear this from him of course and I dont think Ive ever really allowed myself to be a victim. Yes I still have spectacularly bad days where its all a bit beyond the pale of actually getting my head round this thing, or dealing with the constant aches and pains, or the random shittyness that I can feel, either emotional or physical and vomitty. Ive just had to accept that this happens and this is just the way it is. No big deal its just part of how it is now........and when I do that it somehow doesnt feel so bad. I think I do have an occasional moan Im sure (apologies now if you are the one that gets it!), but Im also quite bored of sounding like I moan all the time in my own head, so Id rather just not comment and talk about the other persons stuff where possible! PLEASE JUST SHOOT ME OR TELL ME IF IM MOANING A LOT! apart from anything else, its just not a good state of mind for me to get better and through the day with. AND YES, when Im having a bad one, I turn on the cheesiest tune I can as loud as possible (when Im at home) and have a sodding good sing along......it works a treat! that or kicking a huge pile of leaves in the park is working too!

so my friends, life is rolling on and the tick of time continues in its consistent and unrelenting way of plodding forward..........but with it eases pain and boredom, and health and positivity return! Time heals......of course it does, but so it seems do a few needles and a bit of encouragement!

denial and a good cry!

Over the past few weeks I have been trying to really confront, research and learn what osteoporosis really is and what it actually means for me and my future. Frankly it all looks a little bleak, and its been something of a shock to really get under the hood of what it all means.

Ive joined a number of sites the best of which seems to be the inspire site that helps bring sufferers together to discuss and share and support each other. As well as people sharing their stories (more on that in a bit) it has diet, nutrition, drug and all sorts of personal and direct experience info on it that provides the greatest insight into what can and cant be done proactively and from research and side effects of many of the drugs.

Im not currently being treated with any of the known and recognised OP drugs as they are deemed too severe, nasty, aggressive, horrid side effects such as bone cancer and infertility -  all a bit bleak, and predominantly only for post menopausal women or much older people. So where does that leave me (and my fellow sufferes wiht this thing at such a 'young' age? Well Im taking 20000units a week of Vitamin d as we know. Thats it and a bunch of other supplements to try and help that absorb into my bones. Without the Vitamin D, K doesnt absorb, C doesnt absorb and neither does calcium, so they are all linked. I also referred to the fact that Im bruising a lot and it seems this is an outward sign of these deficiencies too!

The site though gives a lot of advice from people taking a number of of the drugs, their bone status, pain, conditions. To summararise a few of the cases and people on there:
28 yr old girl in SA who has -4 T scores, several broken hip issues, ops, and little support, medication etc. shes pretty incapacitated and also wants kids but being given no advice by her doctors on how viable this even is.
chap of 30 diagnosed with OP. lot of pain, again incapacitated. no treatment either
people in mobility scooters in their 30s and 40s (as well as much older) breaking bones hitting lumps in the street. people bending over in a chair and breaking bones, carrying heavy things and breaking, spines shortening and people loosing several cm and inches in height........33 yr old male with 2 breaks in his spine (readings are -3.6  -  mine are -3.2) requiring critical ops on his spine and not being elligable due to his condition.......!!!
These stories go on and on. Its pretty dire if Im honest. I only feel thankful that Im not dealing with all that, just a bunch of broken ribs and a lot of pain!
BUT - there are the success stories of course too. cases of very careful diet mangement, cuting out red meat, keeping diet more alkaline (acid erodes bone density) special cook books, and fitness balls that help increase bone density in the lowest impact way so as to avoid breaking. Some people are maintaining lifestyles, running and still playing some sport like tennis and even one lady still skiis, but that is after years of building back up her bone density. its a risk, but then I guess crossing the street is too.
I know of a lady who died on impact in a car accident recently. There is much debate about how much her osteoporosis contributed to her injuries, but the facts arent encouraging! its a shock to lose someone anyway, but knowing that a disease like this exacerbated the situation only makes it worse! my thoughts are wit the family.

So where am I? Well in all honesty i tip back and forth between super positive, fighty and strong, to an utter emotional wreck. Putting a brave face on and just getting on with things is sometimes just utterly exhausting, but its the only way I seem able to cope. But I also have days where I pretend that none of this is happening and have a day/ night off from being me. I drink and party and do too much and pretend that Im fine. Its a lifeline in small doses as it lets me feel normal, but the fall out the following day is huge. Physicall vomitting and sickness, cant get out of bed, shaking, sweats, pain and aching. Its all pretty grim. So you ask is it worth it? WEll at the moment I believe yes. To be able to go out and chat and be ' normal' and have fun and socialise like before is good for my sanity.(even if its not best for my body and my health!) It makes me feel better and strong and like I can get through it all. I need that. But I do also recognise that its a strong vein in me of utter denial and not really wanting to face up to it all. WIth knowledge comes power, but so also often comes pain, worry, understanding and of course denial!

I dont let this out very often, my modus operandi is to just get on with it all despite being tired or a bit overwhelmed, I dont want to go on about it all the time, I get bored talking about it. I get bored of being ill and being me. and I hear in my own head how shallow it can seem to others, that this is a disease that might not instantly kill me like cancer could, but it is a long running, debillitating disease and somehow because Im fine on the outside (right now), I cant really complain. Ive got plenty of good stuff to celebrate after all.

I have wonderful family and friends who are looking after me. I have a supportive job and company helping me get through this so I can find a way to keep working and be effective in my job and still be independent. I have a big bubbly personality and a glass half full approach to most things so that all keeps me going.

And then I have moments where I just explode and cry, usually I might add on my own in the privacy of my own home -  the cat looking on! People say crying is good. Its an important way of healing, of getting the stress out, of just deflating a bit. Its cathartic and therapeutic. I think in the past 4 or 5 months since I was diagnosed I have had a good cry only maybe 3 or 4 times. Something usually triggers me. A friend not being supportive and feeling dissapointed by it, or someone being truly kind and thoughtful and holding my hand, or even just watching some crap rom com on tv. it just comes out. But that is good I guess. Im not really a cryer I dont think, but maybe I should do more......maybe its also a form of acceptance I guess too. Another step in the process.

I mentioned the cat. Well he really does have a 6th sense and a remarkable capacity to just know when Im feeling bad. My baby bear is just there right beside me when Im wobbly or having a low day, or the pain is bad. Animals truely are healers. I cant think what life would be like with out my little bear. He is my shadow, and sticks like glue. Thank you Louie.

summit walk - Kilimanjaro 27/10/10

So, little sleep so far, and camping at 4600m, which left a good 1000 and more metres to climb between the hours of midnight and 8!

at 11pm we allgot out of our tents and got our stuff together. There was a general quiet amongst the group, only a couple of the chaps had climbed before so knew what to expect, the rest of us were both litterally and metaphorically in the dark about it! It was bitterly cold too, around -22 or so.

We had our light packs, head torches, walking poles, and 3 litres of water each, plus some snacks and a couple of extra layers to wear.
the first part of the ascent was steep up through boulders. ahead of us all we could see were all the other groups whod left ahead of us by their tiny headlamps on as a trail all the way up the side of the mountain that seems to just go on and on forever.
We walked in single file, stepping very sowly as we had been taught. All of us concentrating on the persons heals in front, no banter like all our previous walks, just the sound of foot on scree and rock, breathing, the odd cough. the first rest point we stopped and had a snack. so far so good. I did notice at this point a sense of being tired and having a sore back, but not enough to start worrying.
on we went to the next stop around another 400m further up. this was more open and a few of us went for  quick look break. we were making god ground, but it was clear that all of us were really in our own places trying to focus on the ascent. My back was in spasm at this point. I mentioned it to the guides and we discussed that I would continue. less than about 100m further up the mountain I ceased up. the cold was geting to me, I was knackered and I started to think that I might not actually make it. one of the other girls had also started having issues with her legs and dizziness and sickness. I saw her turn back. I was with one of the other chaps, going slow at the back and 2 guides. we carried on. My back was getting worse and worse, but my mind was saying 'you've come this far keeep going!!" it was at this point I sat down and took off my pack for the 3rd time that night and began to doubt!

I told Ian to carry on without me. I had to get my head together. My guide rubbed my back with the back of his hand and got my circulation going. Id stoped feeling my fingers and I was starting to get s distracted from pain that I wasnt sure I could put one foot in front of the other. But I did. we would go 20 m and Id sit, Id rest and then carry on. I had no painkillers and I was taking my glucose pills as much as possible and plenty of the water I had. the scree on this slope is also mind boggling at times, you can take a step and find yourself lower than where you started. its hard work, its pitch black, its silent and its sodding freezing (-25) I put all my layers on and kept going.

Id got to about 5650m when it all started to become too much, but what I realised with my guide was that the pain despite being horrendous in my back and being totall exhauseted, more than ever in my life before, yauwning every step, wanting to lie down and sleep no matter how cold I was, I understood somewhere in my mind that it wasnt getting worse.
they say that mind over matter is a remarkable thing. if you can find a way to deal with the pain you have you can push yourself in conditiions you never thought possible. Iver heard this of men in wars and losing limbs, but I never thought that my mind would be doing the same, but even in these circumstances somewhere I made a note that bad as it was, it wasnt geting worse. if I could just manage this out now, with regular stops and rests to ease the pain I might make it. that and my guide coaxing me up that mountain!!!!
it is really quite bizarre what you can discover about yourself in such situations and I think that this was my big lesson. that there comes a point where you can chose to give in or you can try and combat it. you know your limits, you know your markers, you have survived this long, maybe you can keep going........it is this that I learnt on that mountain. Times can be tough, it can hurt like hell, it is more miserable that you ever dreamed and you think there is no way to go on and yet somehow you do and can!

I got to the rim of the crater of the mountain, past some of the glaciers and collapsed. this was around dawn at about 6.45. Id watched the sun start to rise about 200m short of the crater rim where I knew the rest of the group would be enjoying ginger tea and snacks. plus they had the painkillers! After another collapse moment on the rim my guide got me up and on I trudged. as I ascended my group started to apear coming back down. they had summitted around 7.15.........I finally got there at 8am.

All I can express is relief at that point. Graham had come back with me and got me there. we had photos, so all credit to him he summitted twice and he held my hand in making it that last 20 min stretch. I was too tired to cry or laugh or really react. my back was starting to easy finally from the massive painkillers that hugh gave me on his way back down only half hour earlier. I had climber 7.5 hours without painkillers in the coldest night, in the dark in more pain that I can remember, but I did it. you can really discover how tough your body is at these times.

G and I then practically ran off the mountain. the altitude was getting to us, as was the sun. sunlight on a morning like this is remakable to, its the biggest relief you can feel after a night of what seemed like pure hell. the rest of the group were obviously ahead of us, but we got back for lunch. so far 15 hours walking! the way down is sheer joy through scree (like running down a huge sand-dune) surfing the stuff as you slide down. plus you get down sooooooo much faster! the further down you go the better your head and body feel!

after returning to camp late morning - we rested and I got some porters to help me off the mountain at this point. my legs had gone to jelly, my back was horrendous, despite pills, and I was so unbelievebly tired I could barely put one foot in front of the other. after a small amount of lunch and a rest, we continued. this is the fast descent. Myself, G and 2 porters and 2 guides get us off that mountain, all taking it in turns to keep me somewhat upright. rocks can spring out at you when you fel that disorientated.

Final camp is around 3000 just less meters. its warm, its back in the jungle and its pure bliss. I slept again for the first time in 5.5 days.

the final day walking of that mountain through jungle and seeing such beautiful flowers and trees and greenery also makes you appreciate the differences that a trip like this serves up. the contrast of hard harsh cold and brittle conditions up on the mountain and the lush greenery of the forrest. you can compare everything.

And so my summing up.
I learnt on that mountain that I can tolerate a lot of crap. the pain I went through was dire, but I made it to the top of that mountain all 5895m of it. I was proud of myself for getting there yes, and raising 2500 quid, but more than that, looking back now with what I face on a daily basis, a disease that has snuck up on me the way it has, makes me realise if I could combat that, then Im going to damn well try and combat this! Im a tough little cookie, I know that much about myself, and I know that I can keep pulling on my reserves even when I dont think I have any left! that is life. that is what I have learnt. I wont and I havent given up.......this is me......

.......and it seems that I climbed that mountain and already had osteoporosis and didnt even know it! a double whammy if I really think about it. It might explain my bones feeling sore and tired, but it might just be a massive positive that despite myself , even then I managed it! (dangerous as I now know it was.....and Im not just talking the mountain and the altitude!)

kilimanjaro - days 4-7

Days 4 – 7

We left the Shira Hut following another early morning rising. Up at 6, breakfasted and kitted up to leave around 7.30. We were always pretty slow at getting moving in the mornings, and much like the meercats standing to attention in the morning sun, we would often stand in the early rising sun as it started to warm us through from yet another bitter night. By this point it was reaching about -18 or -19 oC at night, so more and more layers were being put on at night to keep the chills out. With mats to sleep on, sock warmers for chilly toes, merino wool tops, and long johns it was a snazzy nightwear look, but quite essential. Oh and don’t forget the furry hat with ear flaps. Having to get out of your tent in the middle of the night is also something of a hassle when it involves putting on boots, grabbing the bogroll and taking a spin in the chilly moonlight with the frosty air in  your breath, and a puffa jacket on. Dropping your bottoms at such a time is not so desirable, but necessary.

The moon was high whilst we were trekking though, so we got a ful moon on about the 4^th night which was simply spectacular and made the clouds and the city below look quite surreal. Its hard to imagine seeing the curvature of the earth, but this was possible first at Shira Hut and we could also see the sun setting behind Mount Meru, which was almost as if the volcano was erupting in front of us. Utterly breathtaking.

It was a gentle ascent in the Great Barranco Valley, with massive panoramic views. The terrain was mostly lava ridges just south of the massive glaciers that slip down the sides of the volcano from the peak. It was pretty foggy at times, but we emerged up a step incline to the Lava tower junction at around 4550m. Having lunch here were some rather large crows and the local rodents, a sort of fat mouse, probably well fed due to all the summiteers’ and trekkers stopping of at this rocky outcrop. You then descend back down and back up the other side of the valley and over  the cliffs. There were some headstands and rather crazy poses done looking out over the clouds. From there we continued to our camp for that night. It was another 6 hour day in total, so arriving, we had tea, relaxed a little, sorted ourselves out, looked at our kit for the next day and then did a further 1 hour acclimatisation walk up and back down again. These were becoming increasingly puffy. Layers on and off as you rise higher, but start to work up a bit of heat due to the thinner air and having to work harder very subtly with each step. 

The following day our trek was straight up the cliffs opposite our camp. These looked monstrous in the morning light and as we saw the groups leaving ahead of us it was like watching trails of ants winding back and forth across what looked like a sheer rock face. This was to be the toughest ascent. It was the sheerest and most challenging, and if your a bit wobbly with heights and bouldering and leaping across the odd crevice like I am, it was frankly utterly terrifying, but the group pulled together and got us all up (despite a few giggles and jokes about certain grimaced looks and a few sweating heads from the terror!) as we went over the top of that ridge, more silly poses were pulled.

From there we continued back down a steep gorge and back up the other side of that to Karanga Hut (3930,) where we made camp again. It was Alfies birthday on this particular day, so chef managed to whip up a cake (albeight it did taste a bit garlicy from the pots he used!) and we all had a few games of cards and some more ginger tea to celebrate! Food was becoming a great source of interest as the days progressed. We had all got to a point where our bodily functions were being discussed openly, our toilet routines being source of much conversation. Beards and body hair was abundant, little or no washing (despite washy washy) meant we were starting to get a bit plumby, but I think when you al smell a bit like that you don’t really notice the others around you. We tried our best and wetwipe frankly are a saviour in such conditions! Hair was just tied back as it wasn’t much good any other way! All forms of real personal sanitisation was pretty low, the water was boiled for food and drinking -  the 5 litres we were  each drinking a day. I was using that in 2 bottles and a camelback, with obligatory berrocca (the water in a camelback tastes grim without it!) and diarolyte for salts and minerals to keep up with all the sweating.

We were eating pretty much everything in front of us, the food was amazing given where we were! Stews, soups, bread most days, eggs, rice dishes, high carb, long burn stuff! And we got fruit or some sort of pudding most nights too! There was no more water from this point so anything we needed was to be carried.

The night stay here was really cold, and in the morning there was a thicker layer of ice on the inside of the tent from our breathe. We were all pleased when the sun started to warm us once the mist had cleared. From here we could see the peak and 2 of the glaciers, but had to trek round the other side of the mountain to reach our last camp before summiting.

We reached our final camp at Barafu (4600m) around mid to late morning after trekking up a more scree landscape. Slightly harder to walk on, and then some step boulders to climb up through towards the camp. The tents were put up, and we had lunch. A few of us did a further acclimatisation walk, but more headaches were kicking in at this point so it was time for rest and chilling before the summit  night walk. We ate dinner at 6 and then prêt much tried to go to bed and sleep.

I might and that I hadn’t really slept at all in the past 4 days so was running pretty low on energy by this point, so resting was of utmost importance. A few of the group had nausea and headaches and were feeling tired or sleepless too, all par for the cause!

At this point the mountain is pretty unforgiving. The scenery is bleak and there was pretty much constant cloud and fog. It wasn’t a happy place with the overall sense of an overwhelming and slightly scarey ascent coming up.