Dances with DS

Nerves no better today. Woke up in a bad mood but decided that instead of going back to bed and lying there in a self pitying heap I should get a grip. Into the little green car - Pete and I get and off to London. I don’t know but driving through it past the shops and people never fails to perk me up. We went to a silver shop as I needed to get silver setting strip - ooooh boy another learning curve! Fantastic shop though with a great stock of silver wire and chains. Rashbel - for those who would want to know & they are online too.
Spent a great time browsing. Pete goes straight to the tools - me to all the pretty stuff - lol.

On the way home I saw a young girl wrapped in a blanket weeping outside a shop. So distressing. It has stayed with me like a burning image on my mind. I wanted to go and gather her up but I turned away as we drove on because my mind was thinking ‘where would I put her, what if she is an addict, would I compromise my own kids and family’…all this sort of crap. I hate myself at times like this, I question my compassion. Why do I only have it when it suits me. Oh god, I am so fickle. There are times I do not like myself much.

Foul appetite day - I dunno - stress does it to me everytime. I just pushed the protein drinks today - no choice here. Even though the devil on my shoulder thinks - ‘I ‘ll just go without ….’ I know it’s not optional. No negotiation! I tell myself this as a counter action to the devil…I miss being a foodie right now…sigh. My restriction gets worse the less I eat - I do notice this - even a drink is hard to finish. Think tommorrow I shall do a small grazing type of day to try to counter it a bit. The mind is willing but the body does not want to know. Strange how my body now has the control. Sometimes I fight this but mostly I thank heavens for it. I have realised it has it’s own intelligence and 90% of the time it’s a very positive thing. Just the 10% is a bit of a downer.
On the nice side - I am walking down the road today suddenly I realise my thighs just don’t rub together at all anymore, there’s a gap there with air moving through it - holy cow! - that made me feel better! Fantastic!

Nice evening working in my wee studio - listening to music, working away in my own world and thinking on things that make me have happy memories. Travels - oh I need to go badly - where? I don’t know. Also thinking on people I have met and whom I miss. Wonder what Moshe is up to and if his arm is healed now? So many faces come to my mind. I wonder if the lady in the shop in Hong Kong has found love at last , or at least freedom - has she left her drug addict husband yet? I wish her strength from afar…faces and more faces. Still jabbing the fingers no end though my little pieces will be baptised in blood (eek!)…lol.

I am struggling. I’m stressed. I never thought I would be but waiting for the verdict on whether I am in for reconstructive surgery or not is taking it’s nervous system toll on me. I realise I am just not as sharp mentally as I should be - I am gaffing in small ways then beating myself up. If I have offended anyone recently please know I am sorry - I’m just not with it and slightly reactionary. It’s the not knowing that is the worst really. Not being able to plan trips, not being able to get my hair done , little things I suppose. I’m just feeling in a limbo about it all. If it was a no - I could get on with other plans and look forward to them. If it is a yes I have something else to look forward to. But it’s just a void right now. I know the lesson is patience but I don’t have much of that! Anyhoo - I think being low on iron is not helping me along with stress levels as I am tired. Dead tired. Ordinary things knacker me. My appetite is on the blink to further add to my problems…it’s taking me hours to get a plate of food in so I am hitting the fortified milk drinks. I am not a happy bunny. Worst of all I feel I can’t apply my own advice to myself let alone anyone else right now.

To distract myself I work on the jewellery and do inane things like trying to sort out my wardrobe for the hundredth time. I would love to shoot away for a weekend break but I am tied to the promise I made not to do any bolting -lol. I hope this phase in the twilight zone passes fast.

Enough whinging - I know it will pass one way or the other, I know I should just go by the moment and not think so much! All my sage advice is biting me on the butty right now so I will sign out and hopefully my next post shall see me finding my point of strength again. (wry little smile.)

Got up early and off to London. Mad rush as usual - swallow protein drink , feed animals, chat with children to get what they are doing today, drop off nighbours birthday prezzi after spending an age trying to unearth wrapping paper & sellotape, grab coat, face the cold cold day. Then off to scour the Rocks and Gems show with my Pete. It was good - stones and gemstone beads from all over the world. My idea of heavenly bliss. Surrounded by the kaleidoscope of colours, picking through endless forms and shapes I found some very top stuff at reasonable prices too. Barrel carved Agate in dusty earth colours, ochre, deepest green, red ochre intricately carved, chunks of sea bamboo, meticulously cut agates that catch light as one turns them - a magnificent chrystanthemum stone - I was happy so happy! Best of all I found a lovely chap who can reset stones and drill pebbles a talent I have been searching for as I don’t have the equipment.

Later we found a cosy atmospheric restaurant in Barnes and I devoured a huge man sized steak, several sauteed potato’s and a good helping of rocket salad plus a latte. (Holy cow!) Swear I could hear my protein receptors bursting into song!
It’s grey as anything here today with a constant cold drizzle but sitting in the car on the way home admiring my rockly bounty I felt that even the abysmal weather would not punch my spirits down. Realise that I must get out more instead of retreating into wintery hibernation. Think I get SAD or something in winter.

Keen to start another project - completed ‘Bat & Clouds’ necklace last night but only after I had near perforated my fingers several times with the felt punching needle. Much rude expletive cursing each time and fingersucking…til I realised my little dog Zen was staring at me sadly. Was I yelling at him for nowt then? Awww bless, cuddles between the ‘F’ word seemed tpo make him realise he was not to blame. He does make me laugh though. So attuned to his mothers moments! My protein must be ok though as this morning the wounds are healed already.

Not much else to say really. Mum had a lovely birthday yesterday - she is something special at 68 going on 25! Enjoyed her tales of a very happy day but longed to be there with the family. I have to work a plan - this is not too good. Perhaps this year we can shift things to enable us a more dual life. I would love to be in SA in the winter months here as I just have days I can’t cope with no sunshine. Crossing fingers.

Erm….hardly but I would have died to be healthy, I would have died not have people stare at me as if I was a public disgrace, I would have died to have had the feeling my family could feel proud to be next to me, I would have died to end my sore joints, my sleep apnea, my constant bodily inflammation, asthma, to cure my huge liver and my extreme depression and fatigue caused by my obesity. I would have died alright. I would have died HAPPY that I could try to do something to save my own life. When I had surgery I knew the risks very well. I was not brave at all - I was terrified a great deal of the time - but I thought death might actually be more welcome than continuing to struggle on emotionally and physically.

I think and rethink this BBC television programme with it’s catchy but incorrect title that insinuates WL surgery is a vanity issue.We all know 30,000 people in the UK die directly of the sympotoms of obesity. It’s a desperate disease.
It was no huge shock to me tbh that people die of malnutrition & that sometimes the band does not work. I know these things. It was no huge shock to me that people are misinformed of their condition by medical pro’s - there are times in my high fallutin non-medical-expertise that I have spent the night awake agonising over how to help a sick WLS patient when they are prescribed inadequate treatment - or as terrible - left to steadily decline down the slope of malnutrition out of control with no surgeon interest or intervention. What can I do? Comfort is good it must go somewhere - but I am helplessly frustrated that I cannot do very much more without sticking my neck out into risks that could affect both me and the patient.

Must people present at deaths door to finally get treatment? Sometimes I have thought so. Sometimes listening to that frail patients voice of despair and all the tiredness, weakness in that voice - knowing the clock is ticking fast and they are falling off the slope, I have to get a grip on myself and remind myself that most of the time surgeons are incredibly caring. So I was glad to for once feel that I am not the only one who feels the systems can pretty often (though not always) suck in terms of aftercare. Maybe the program will improve aftercare for us - I hope so.

What made me reel a bit about the program was that it kind of underlined my worst fear really that I wrote on my website right at the outset of my own DS journey - that in the end bad press about malnutrition might cause Bypass surgeries to get a poor rap. I have been on one solid mission in this department from the outset because this would be tragic. I, along with others, have stuck my (now scrawny)neck out way too often on the vitamin & nutrient requirements for DSers from the getgo. It has been scary at times …mainly cos I am a bit slow to learn things and I had to learn FAST! Most of the time I still do as the unrecognised field of vitaminology has many opposing viewpoints and as for DSers there is not much solid data about.

So I was a bit off the balance to feel my fears could be coming true. I have questions. Is this program going to set the snowball rolling down the hill? Is it going to set a WLS bashing precedent in the future? Will we see a rash of negative and unfounded articles in it’s wake - after all it certainly had the nation talking - great income for media. (Gulp.)
On the other hand please let us know about it - let us know our true commitment requirement pre op. It is for the best. Knowledge is power. It really is. But how quickly does education transmute into sensation? The line is fine and wobbly.

Most DSers in this country are now savvy empowered people doing well & coping with the changes which heartens me greatly. I watch with a sense of gratitude as they now educate and support each other regarding nutrition. I am pleased to see on the food forums at WLSinfo that they are eating intelligently and compliantly most days. (Though of course we all have our less than perfect days, myself too!) Moreover what has suprised me is the zest for life and strong spiritual aspects they develop as well as they live with their surgeries..it’s goodstuff. I wish one of them was on that program because this is where the plot began to fall apart for me and get somewhat lopsided.

It’s one thing to state the risks but where were the stats? Why was it not said that malnutrition causes death but is HIGHLY avoidable in most cases? What were the patients taking daily in supplements ? What are they eating daily? It’s a shame this was not covered because in my experience it’s generally the non compliant patients that will go on to have potentially life threatening problems. Where was more surgeon input about the problems - I do think we might nip at the surgeons when someone suffers or dies, but almost always there are always 2 sides to every tale. All this vital info was ommitted.

Anyhoo …I ramble on in my thoughts. Most of all I am always thinking prevention is better than cure…how to get that message home I don’t know. As I said in my previous post (so completely unawares of the program about to be aired!) , we are the living books.
Time will tell - it will have the success stories and the sad stories..but we have to understand much much more to combat the sad ones. Where do we begin? It’s no good just shouting - that person was non compliant. WHY? WHY and WHY again. Not easy to answer - factor in poor doctor/dietician/support systems education about bariatrics, factor in the headstuff and metabolic alterations patients go through, factor in less than perfectly done surgeries….who knows? But that won’t stop me from trying to ‘get’ it.

On other notes I had a nice day trawling the charity shops for clothing that fits better. A good mate and I hit the local villages and I bought some pukka gear! I always think I will buy only one or two things but then end up buying way too much -lol! :S Top buy a beautiful Irish sweater for Pete - the colour is subtle and it is beautifully hand knitted and never been worn. Next on the list a divvy little grey velvet jacket tatty enough for me to wear around the house for my own pleasure. Oooooh and a really nice dress. We had a delicious cod & chips lunch and enjoyed each others company greatly.
I’m working on the felt madwoman style - building it all up and still very inspired. Things look good - 3 necklaces down so far. I am at my best mentally /emotionally when I am being creative.
Randomly - my feet are ice blocks so much so last night they ached. I have to figure out a way to keep them warm because this is just stoopid now. I feel a thermal underwear affair coming on soon with socks included as even my thickest woolens don’t dent the cold foot syndrome. Well I am whinging here now - but BRRRRR will the winter NEVER end!

Spoke to mum today - her dog is expecting no less than five puppies next week. She’s not too well right now and suddenly I just want to go home!

Sometimes I think either I have good karma or I am just lucky. Pondering my DS lately and still enamoured with it. I’ll never take it forgranted - how could I? Each day is miracle day for me. I notice still how light I am on my feet. How my body has free movement. How I can see my feet! I revel in things that are small admitedly but for me they are big. Wearing BOOTS with HIGH heels :-D. Wearing a belt. Having ankles and wrists and rings that fit. Sitting in a chair and not touching sides. Being able to negotiate my way easily through small spaces even though at first I always hesitate. Water in the bath that does not dam up behind my back but flows freely past me. Running on a whim. Dancing dancing dancing. No breathlessness and actually enjoying a good walk. Being able to CHOOSE my clothes and finding things that fit in ANY store. A backbone with defination and ribs glorious ribs. A happy mood 90% of the time. Chatting to complete strangers. Shopping and never dropping! Enjoying good food but not fixating about it. A shower that hits all parts of me. No illness in the years I have had my DS - not even one bronchitis, no need for the asthma pump. A good nights sleep - no apnea waking me on the hour. So many many ordinary extraordinary things!

Still let me remember it’s not all roses for every DSer. I know a few whom I love dearly who struggle. They are open and tell me they got lax with the supplements. We are so human and we can slide. No blame - no blame at all but now we just pray it can come together for them. It’s hard to admit one has been lax - it is very hard to go onto forums for support but I say please my darlings speak out. Your story helps to give others a fuller picture and when you go on to heal - your experience is just invaluable to others undergoing the same problems. We can then build data on dosages for example I have a good friend on intramuscular Vit D injections of 600000IU’s (yup that is right!) every fortnight. This could help others prescribed ridiculously low doses of D for deficiency. I hear coconut oil is being used in highly malabsorbant patient and this we need to know more about. All these things are vital knowledge and so while I hate it my friends suffer - they are also the means for us to learn and we should thank them not judge them. Theres no book out there that could cover what we go through because we are all just in a huge learning process here. And there are no guarentees just like the rest of life. Each one of us is a page of a living book. This is my take on it. I go on like a demented arse about proper nutrition especially in the first years of DS but ideally always. How can the body restore its functions if there are not the building blocks to do it? It just gets to be even more evident as we all walk along the old path.

Last night I had a wonderful meal with two very special DS mates of mine and we had a good laff and I cannot this morning quite assimilate all their transformations. Amazing amazing. It fills me with joy to see visibly the years drop away - the burdens drop away from people after the DS. It’s so good to no longer be alone in this but to know there are many very happy DS patients here now. Oh it is goodstuff. I love the energy of it - how where I once saw depression there is joy, aggression turns to peace, defensiveness to open heartedness. You can measure the DS in body but no one can measure what it does to the willing spirit. It always moves me. It always touches me. It always will.

We come back to life. It’s not always easy because being a living dead has a kind of numbing effect on one. It is a coping strategy - the numb denial, the bricked up dam of feelings that lies supperating like a stagnant pond. Then the DS happens and it puts a river right through that pond. The dynamics of change are very intense and this is a helluva ride. Rapid white water stuff sometimes. Grab yer raft and surrender to the flow as much as is possible stuff. I had the same kind of lurching fears at times on my DS ride of falling off - of having to master my own balance inside & out. Sometimes I can go with it - other times I want to resist - to slow down and find my feet and know my strangers face as mine - my very own.

I have come to the New Year looking myself in the eye. I have my slippery slope syndromes I am trying to deal with. I have no great targets or resolves except to continously let myself be vulnerable and open and to try to not put my foot in my gob too often. Oh and to HUG someone everyday.
Randomly - I am felting and finding it a wonderful meditative media for my creativity. It is happening and I get so excited - much more by the fact my creative flow is back in full force than by the actual felting. It’s a source of amusement for my family - Kate refers to it as ‘that damn felting’…….lol. That is until she herself tried it and was bitten by the bug - I swear it I shall yet indoctrinate all who have a tactile edge to them -lol. I have not written much lately as once I begin I find it hard to stop. I have loads of eureka moments and love it that my avante garde plan is actually aesthetically working at all. It’s a weird marriage cloth & stone and one that I might well be a first in doing. It stretches me & challenges me because it demands a constant refinement of my art. You can’t just bung it together and expect it to please the eye. It has strong technical challenges as well - how the feck to get the colour onto the wool without all the mess of dye baths? Could my poodles ‘wool’ be used to felt boots? After great trial and error I think I finally licked it! I know it is sad to get all up my nostril about it but hey - small things now might be bigger things later.