Dances with DS

It’s been a frail kind of morning - I don’t know what triggers this sort of thing for me. I feel easily bowled over and that I don’t express myself well sometimes. I suppose on days like today I just feel insipid, vulnerable & small.

Perhaps it is a bit of fallout from the other day with gastroman - it looks daunting to start trying to get care from scratch again especially now when my life is truly getting insanely hectic…I don’t know. I can’t pin it. That is always how my depressive moments are - on the surface they seem without origin. I notice though they don’t originate in a void - it’s often unsaid stuff with me that lights the old wick. Add to this some very personal stuff that I won’t discuss with anyone (sorry but just too personal and I do keep some of my life private as possible - but just in case you think my life is an easy ra-ra ride it ain’t ) anyhoo this has taken it’s toll on me richly and I suppose I should follow some of my own good advice and take a break soon - put more energy into my family and getting my house on the move.

Aside from this I read a long awaited report on DS stool (very exciting!)…it looks very positive and it is a small step towards confirming other stats regarding our malabsorption rates. It is of great interest to me and I only wish I could access the bigger papers on it - so far I only have a USA thread and there might be a few typos in that as my mate Ken pointed out to me.
The basic abstract is there though. I have gone over it as fine toothcombed as is possible since yesterday - slowly it makes more sense to me than it did initially, but I still am working the old head around some things and still need to get the proper report.

Looking at it very pragmatically it is a small assembly of test subjects. However from little acorns big trees grow. In my view absolutely no medical abstract is shitty (except the one’s that piss me off! but seriously even the most opposing ones have value even the ones that diss the DS into the ground - I have one posted on my website - ghastly bloody thing it is too & everyday I think about removing it, it hacks me off no end -lol !) . BUT for me they are all small steps towards getting a bigger consolidated picture. The very nature of these abstracts means biase is almost always going to exist.

Faults are almost always going to arise. This report seems on the surface (not got the big paper yet) to be without consideration of certain factors (RNY & DS limb lengths for a start) but I presume they would just work off mean averages in this sort of case. I think back to the huge report on all the surgeries with masses of data, test subjects and the like…it was hailed as the biggest WLS report ever - I read several articles that shed very dubious light on it in many respects. So I think we can’t punt for perfection and probably must accept in most of these are flaws and that’s pretty much the nature of the beast. *However this does not mean they should not be published*. This also does not mean that we should not read the information and take what is of personal value & meaning for ourselves and disregard what is not.
And if some numptyhead starts to swallow liters of *saturated* fat after we, the DS community, have for years repeatedly discussed the merits of healthy fats - tis tough cookies!

Probably most abstracts fall in the midrange & beneath of useful information (unless you are the one needing it of course)!

I’m unscientific & illogical & I like being able to make a direct personal connection - I had several real AHA! moments with this one *based solely on my very existential experience of how it truly is to be a DSer*.

Fats - well the malabsorption rate is merely a back up really of Scopinaro’s & others original 70% malabsorption for BPD claim as I wrote on my website years ago - I think it gives us a ballpark to play with & this is good. Fat is a most misunderstood thing at the best of times and my own headstuff surrounding it has been great. It’s an emotive subject for some. But I find it rather shocking that so few in the UK actually research and read the DS forums in the USA - for gawds sakes the figures are not new news!

I grew up with the USA DSers - they are not at all fat afraid - a good thing as I needed to get my head around years of the red flag conditioning. I’m grateful for those guys to this day.
‘fat is bad for us, eat low or no fat only - on and on it goes’ - all of this that applies to the ordinary mortal honestly does not need to apply to the DSer. I think if our bodies tolerate fat well we can safely let it go…why cling to old stuff. For a simple start fat will help carry some ADEK into the system which is not a terribly bad thing for us. Good fats play vital bodily roles - I’d not be without my olive oil!

I doubt we can fully avoid saturated fats unfortunately but don’t be silly with it! (Besides if you are silly with the stuff you will be on the toilet most of the day doing great big saturated ploppers -lol!) If there is a great big hunk of rank yellow meat fat on the steak don’t eat it cos you can! Be as selective with fat as possible and use it to gain an advantage in the taste department, in the metabolic department too. Use it as replacement therapy for sugars and shitty carbs. It’s a beautiful thing *in it’s proper context*!

A wee experiment in progress - I want to see just how much my eating correlates with the report. I write from time to time about my meals but it has been an age since I keep a solid list. 2 days on the fitday.com website - what an eyeopener for me! Holy mackerel!
Certainly regarding the calories intake - an area that fascinates me though I suspect in my own life I do more like a 2000 - 2900 kind of range than 3000cals ( I *think* but know not just yet!) - I felt some reassurance there. It connects with the amount on the groundfloor that the DSers polled a while back - another kind of confirmation. I’m looking at my own life suddenly in a different context since this report - I am trying to really pinpoint my own experience in relation to it. I’m looking at the groundtalk on the DS floor and seeing that there is actually an interesting accuracy about it, small though it may be. It’s rather fun and I’ll go into more detail later this week about it - but that is just because I am awfully awfully sad -lol!

Finally I believe deeply in that unquantifiable magic positivity factor. I know it shone a wee light on the ground for the DSers. One must think of the energy inherent in positivity and how it affects peoples lives to have a smiling happy moment.
For many DSers that report represented a smiling moment.

Here is the thread if you want to take a gander at it:
Gagners abstract

Well there we go - I start off a grump bag and then Pete sent me a link (from the Sydney Morning Herald) that has cracked me up - just look at the expression of the poor old mutt - the picture is the result of a man in Australia who was unwilling to part with his beloved doberman (the council there wants Dobermans banned) so he very creatively devised his dog a suit.
I had me a good laugh at the poochie in poodle gear and I feel better. Hope if you are having a crap day it makes you feel a wee bit better too!

I know it is all very ‘on the rebound’ but I do have this incredible dream that one day I will have the dosh to set up a WLS care clinic equipped to the nines. I dream it most when I am down & out and unsure of how I must proceed. It’s a good dream. I think one day actually we may just have the dosh. We have several high flying plans cooking in the oven right now & if even one comes off it could all happen. I’d not be so bold as to say this is a high chance - when one is playing high stakes the odds get smaller that is for sure - but there is a chance this much I can say.

Still, I am thinking this weekend I should just let go & let God - at the risk of sounding like a born again in Jesus sandals. Just not think.

This morning my parcel of syntrax ‘Nectar’ protein arrived - bless Mags! It made me laugh - it’s a humungous jar of stuff. I opened it and stuck a finger into the yellow natural looking powder. Not too bad. At a push in Turkey I could eat this neat. I thought I could do with a 28gm protein lift - made up a glass - omg it looks exactly like Comfort Fabric Softner - same true dense blue. I half expected a smell of ocean spray to accoust me! The stuff is BLUE.
I am okay with it - I must just not look at it. If I look at it I start a mild heave session. Why could they have not left it a decent bananary colour? Beats me - it’s a bit like ‘magic’ kids stuff - delightful for a 6 year old who does not care if his drinks are blue…but it is aimed at the adult market.
Mind you I say this but I had the thought that if I put some in a bag and bought a lolly and did a lolly dip sort of thing I might get away with it & if that is not six years old stuff I dunno! It made me think of when I was a kid and we bought lollies and sherbert. We used to make our own sherbert from epsom salts and icing sugar - we was poor as anything. My mum bought us raspberry lollies for the dipping act and I remember my little brother covered in sticky icing sugar & epsom salts it even got in his ears -lol.

Taste wise it is certainly palatable - without a doubt - though for an older more hardened tum. Very sweet but with a tiny acidy tilt that makes the sweetness bearable. I will put it into a brown bottle or something to conceal it’s hideous artificial colour and take it to Turkey. It will save me there as I always deplete in Istanbul! It’s good travelling stuff…what is great is it just mixes into water…no milk required - so very unfussy.
I was just thinking how great it would be for RNYers as it has 0 carbs when I read a US thread this morning were a person said she had on and off dumping with it! What the….!!!??? Anyway it seems the whey used is instantly and speedily absorbed - and it is this that makes her feel horrid. She said it comes and goes. Apparantly she adds ‘blended’ whey to it to slow down absorption - maybe fibre would work - like eating a wholewheat sarmie or something first? I dunno just thinking aloud.
So much for that one - it will probably be hit & miss for the RNYers then. Wish that someone would develop something really feasable for them. Will be good for bandsters though.

I think pragmatically there are times we must force ourselves to just get in the protein. Thanks to this stuff this morning has been really high. 28gms Nectar plus around 30gms of chicken liver & bacon = 58gms. So I am having a snickers (9.3 gms of protein!!!) now - midday and all - as a treat! (I very very if ever eat daytime chocolate as I won’t touch anything like this until all protein has been secured - anal as hell I know but it works for me!) It’s been a cracking good start to the day in all. The chicken livers remains a fav of mine - I did them this morning in an Italian veggie sauce of peppers, tomatoes and courgettes, garlic, mixed herbs and fried up some onions alongside. I added some bacon for extra protein & yum factor.

I am having a current strong malabsorption scenario as evidenced by very floaty stools. Despite the waste of water flushing hysterically in the mornings - I am relieved when it is like this - I think my body acts in a sort of equilibrium holding pattern. The interesting thing is I am not aware of increasing dietary fats currently either so I’d not expect such a strong effect. I note too no iron residue in the stool - I must be putting it back currently. No calcium soap either. I think my body is trying to hang on to stuff. I never thought I would read my own poo but there we go - a DSer knows no shame…mind you I know some RNYers who hold the same values -lol!

I am trying to find a half decent hotel in the heart of Sultanahmet, my mum is in her late sixties and though she is terrificly energetic and independent, I don’t want us to be making our way through dodgy parts of town at night if I can help it. We have one week to be there - I have planned an itenary of sights - we will be tired but happy! I am looking forward to this - I am looking forward to the light, the friendly people and the general buzz that is Istanbul. I have made several friends there now & hope to see them too.

Well the great once a year appointment was today & I just don’t know what to think or feel! We start the appointment - he comments that my weight looks nice & steady - thank you I tell him. I feel quite pleased. I go on to tell him I have bad bone aches - it is not right. I then decide to play it stoopid and ask him if he thinks this could possibly be related to my surgery? ‘Not at all’ says the expert strongly. ‘I would be most surprised!’ Okay thinks me, lets surprise you then - in monotone unemotional voice I tell him recently some DSers have barely any Vit D in their blood & some are really having problems with PTH & calcium levels too. As if he heard not a thing he repeats that he is quite sure I am just undergoing natural joint/aging related degeneration. So says I you won’t refer me for a bone scan to be on the safe side then? He reassures me I truly have nothing to worry about.
Crikey how I wish I could believe the man too…I’m thinking what if you as a DSer vested all your trust in a doctor like this??? He is a kind enough fellow & I like him - he has that kind of medical aura of charm about him - a truly likeable chap don’t get me wrong…. but the care is just insane…I still cannot believe it really.

I hold onto my temper and decide today is not a goodday for a man to lose his eye. I go into bird pretending braindead mode. IE - do not incur wrath, appease - thank the man for his care - be civil.

In my nicest unconfrontational grovelling voice I decide to broach the topic of ADEK labs. ‘Right’ says I ‘thank you for your input about the osteoporosis fears I have. For the last 3 years I have had an enormous problem getting my ADEK labs and other labwork done and I have had to really beg for it & be willing to pay for it everytime. I went to my GP and he said part of the reason is that you refused to acknowledge I have a need for these tests and you stated you felt this would be a waste of money. It was on the computer and I really wonder if you could not remove this as it is an obstacle for me - or at least explain to me your reasons as to why you feel I should not get ADEK labs? It will be interesting to me and perhaps I can learn from it, as I have a huge body of evidence that suggests I should get these tests and others. Moreover DS patients here on the NHS get all tests done no questions asked & no problems. So please could you tell me why I should not have tests done in your opinion?’

Well, I might as well have dropped a whopping great DS poo right there on the floor so strong was the awkward silence. After a fair bit of ahhing and umming the venerable gastroenterology doctor told me that because I was the first DS patient he had taken me on out of goodwill really (Oh thank you thank you I wodged in at that point - mind you I sound harsh now the mans intentions were good let me give him that.) moreover he had decided that really I was seeing the wrong man as *he had little understanding of my condition*, me being the countries first and all that and he felt therefore he would suggest to my doctor that I be referred to a DS surgeon instead and that he would dismiss me. ‘And btw’ - says he - ‘you do look very very well!’

Holy shit!

4 years of begging and performing and even being refused at one stage a referal to a DS surgeon. Not only this but the man now openly admits he understands well erm - NOTHING about my surgery??? ( he was the Crohns expert you know - I thought maybe his fountain of knowledge might still one day come pouring forth to benefit me - I am a born optimist!)
Is this not negligence or what? I just feel like giving up sometimes I really do. Toss it - get sick get treated. Seems the way to go. I should stop trying to help the DS community to health - I reckon the lot of us should get sick - we will get good treatment then eh.

I got in the car & told Pete. I felt bitter. I felt sarcastic. Sick & tired of empires and umpires and stupid little ego games. Sick of trying my level best and getting smacked down from every angle. I was under the bold idea I might be able to ask the good doctor about the mechanisms of calcium etc - ha ha ha. Forgive me for laughing at myself. What was I thinking!!! Silly looney! I had a little rant - I asked him to please hug me. I get like that. Well, he said you might feel like screaming right now but actually it is bloody good news. At last you might just get the care you need after all. It could be the best thing that ever happened to you.

Anyway - the end of an era. I am disowned yet again and just when I need my labs. Off to my GP next week - I know he at least does hear me and tries his level best to help me everytime. It’s people like him that restore my shaky faith in the medical profession.

A day on the phone mainly. I can’t believe the amount of booking to be done - this for a day with my Uncle and then the forthcoming Turkey trip with my mum. I have e-mailed/spoken myself hoarse!
I have booked the London eye, a river cruise to follow that and lunch in the old Fire Station at Waterloo. After that it is anyones guess how much else we can squeeze into the time but we might just make a quick turn to Windsor with any luck. If not there is Harrods and a ride past Buckingham Palace…options are lined up.

Turkey is more of a saga with my mum finding the usual constraints on her visa wise. One would think she was a terrorist tbh. Anyway the latest here is to turn people back to SA in particular…so to avoid this we need itenaries and formal bookings etc. I doubt she will have a problem but best to circumvent any remote possibility of it. I am getting excited now planning where I will take her - she is much like me loves rooting around and old architecture so I am in good company. I found a nice hotel -ottoman building but not at the devilish prices of Eysil Ev - hope it is as good as it looks. Hope I can get a booking at all come to think of it! http://www.uyanhotel.com/thehotel.asp

My mum is an innocent … asks if we can’t share a room! I said sure if you don’t mind mild feelings of aspixiation after a good carb dinner -lol! Changed her mind rather rapidly then ;-)!

I am already thinking of the itenary - I don’t get bored wondering about Istanbul - I could visit the Topkapi or Aya Sophia several times and be delighted each time with the entirity of it all.

Something to look forward too. I do love to have my mum around too I miss her inordinately.

It is hot hot hot here a very beautiful day - hope it holds out for Wednesday. ZaZen made us all laugh - he arrived at the door to the lounge dripping with mud and duckweed - been in the pond. He looked very shamefaced -knows full well he has been naughty! Looks at us with big puppy eyes and when told to stay outside sulked somewhat. He is as far from a prissy poodle generalisation as can be - he is convinced he is not dog but lion… His groomer will be delighted - he has a habit of doing this does my boysie.

I had a great brekki today - calves liver, onion, sage butter and a bowl of mashed sweet potatoes. Delicious!
Lunch a flank of peppered mackeral & the 2nd half of the lobster - to die for.
Dinner is cold chicken with homemade mayo & salad - think I shall have some bacon too.

Sometimes I still can’t believe I eat this food without gain - infact recently I have had a wee marginal LOSS - nothing spectacular but the jeans are a tad loser - I think I had a rebound some time ago (dunno refuse to weigh but clothes a little tighter) - I think it will probably go like this to some degree - I won’t remain static & will probably move between a slightly lower and higher weight on & off - but I feel better and more comfy here so don’t want to lose more. I have a feeling it will balance out from time to time. I also notice it definately holds true that when my meals are much more protein foccussed my weight does drop easily. It’s a flipping miracle I don’t care what anyone says. Since when could I EVER have lost this so easily - eating so tastily and abundantly before? Never.

Watching the telly with some horror at the witchcraft killings of young African kids here in the UK. It is beyond belief the abuse really - the camera panned on a terrified shackled child sitting in a mud hut being tortured so that she was twitching in nervous fear - omg.

It is embarressing to think I come from a continent so cruel - so bloodyminded that it fosters abuse on mere helpless kids out of middle ages type superstitions. We have to be so politically correct us ‘whities’ - but that is the kind of barbarism that unfortunately does exist in Africa along with muti killings and other atrocities. It is not all demure and spiritual and our Mandela is an icon - and and very much an exception. I suppose as Ghandi was exceptional or the Dalia Lama is exceptional. The West should know this because it makes me laugh how little they do actually know about Africa’s shadow side. I have to remind myself though that of course it’s not attributable to everyone & there are great people out there taking a lead doing good things.

I wondered how the newsmen filming this poor kid in undies only taking abuse, could stand by filming it.I am glad I was not there - I think of my mum who got out of her car in Malawi, woman alone, to try to save the life of a young boy being kicked to death on the roadside for stealing a loaf of bread. Your life because you were so very hungry?

Such violence is not so uncommon in Africa at all. I think of all the babies in my country raped to cure grown men of Aids. It’s not so very rare. Little tiny vulnerable babies - you see when I think of that it is very hard for me not to feel angered. Don’ t read if you get upset easily please
I turn my back on it because who wants to even think about things like this and potentially spread more negativity about… but seeing these kids being treated like that in Angola I can only say it needs to be acknowledged so something can be done. Let the world see it - is it shocking to them I wonder or is it just me? I left my country because this is part of the kind of violence there. I don’t care if it is black or white - violence is violence it has no colour. But I say no more.

I am preparing mentally to chat with gastroman about WHY he believes I do not need ADEK labs. It’s flipping hard to look these ‘experts’ in the eye and try to explain things to them. I laughed at my Pete this morning coaching me in telling them straight - he would not mince about as I do - gawd but sometimes I hate this ass creeping approach I have to say. Is it the way of the world I wonder.
Rant over. I shall be a pillar of calm on Friday & but if he patronises me I shall take the man’s eye out I swear it!

A beautiful day here. We loll about in the morning me doing a fair amount of my pottering thing. Lately I have ants in the pants & find I like to idly walk about slightly mindlessly. I should be getting a lot more mindful because next week the great plans are being drawn up & of course now I have cold feet. Do I want to build a stunner in Suburbia? Do I not wish to just purchase a derelict farmhouse and live out my days in bohemian paradise? - are there any derelict farmhouses in Surrey? alas I doubt it. So I don’t know I am indecisive and annoyed with myself.

By 12pm the sun had soaked into my Vit D parched bones and I was feeling up for a pub lunch - roast beef smelt good in my head. I coaxed my darling away from the cricket which was no mean feat I might add.

We put the hood down on the little old car to get the best of the sunshine & off we went to Shere. I love the ride there - it is through the Surrey Hills - down lanes that smell of GREEN and that are overgrown both sides with old trees that create a dappled light effect and the feeling of going through green tunnels. Sometimes the verges of the roads are full of moss & fern perfect place for badgers sets or the wee folk!
Everywhere there are green fields fringed by ponds and streams and trees. It is seriously chocolate box stuff - we pass stone cottages thick with bramble roses & wisteria dripping in long blue trusses over the entrances. Old leaded windows and low eaves - it’s seriously pretty stuff. When I was a kid in SA - we had a very homesick English teacher and I used to embellish my writings with little sketches of cottages just like these - or fields bordered by hedgerows I soon worked out the presentation scored me marks way over the content little minx that I was!

Shere is a marvellous old wonky town with wonky roads and wonky buildings - it’s the dogs bollocks (new expression used appropriately thank you Ken! ) - I think this means it is hot - the best thing since minced beef etc. I love the olde world feeling of it. We stop at The White Horse on the square (more a kind of circle thinks I)and I have delicious roast beef with roast potatoes, yorkshire pud (which Pete swiped), carrots and a delicious chutney which I swiped off Pete’s plate.
All the time the sun keeps upbeat. There are little one’s everywhere I watch a new nana bonding with a wee soft newborn babe - it’s touching stuff.
Replete we wander up the high street and I buy chocolate - it has been a long time since I tasted some - yum nice stuff - how quick my old buds are to appreciate it - I confine myself to a small mint bar. Not even going to get into a bad sync with the stuff…besides I am pretty robustly full as it is -there is just a smidgeon of space for a wee choc.

Tonight I have had no appetite - this is often the case - I have a fine lunch & supper is generally kept protein laden & light. Talking of protein I am distressed by how many are struggling with the intake right now on wlsinfo - gawd we have to keep pushing it - the consequences are not good at all. I don’t know what to do… feel helpless. Many people play with it and get little warning signals they don’t heed (my own is a puffy set of eyes from water retention but then I do it tough and hard on the protein the following week i can tell yer!;-) )…it is NO JOKE being hooked up to TPN.
Some can do carb early on and I have no bones with that at all - I think part of the jaunt is eventually having a realisation that all food is fine BUT PROTEIN FIRST has to persist.
And in the first year it’s not uncommon to just be doing protein - year two is funtime with the DS - when there is enough space to have as one pleases really but even in year two protein is paramount - infact this is lifelong no exceptions.
I could just cry when someone tells me for whatever reason they must eat carbs & less protein - it’s trouble looming there is no way a DSer can do this…no way - no matter what.
I get slightly crabby too - I want to say *let’s get real* but then I think it’s not my journey & people have to find their own path & know their own DS.
I don’t know I have to think on it - maybe devise the worlds best tasting protein bar - summat savoury and easy to eat. I’ll think on it.

Anyway for dinner - a nice light meal of rock lobster with salmon mousse thank you M&S. Expensive but beautiful. I could only do a half. I had a healthy portion of bean salad with it some good protein there of the veggie variety.

And I had a big chunk of juicy sweet watermelon. While eating it I flashed on this being eaten with a really good soft cowsmilk (no ewes stuff for me thank you!)feta cheese. I think one could have a wee feast on such a combo but perhaps I am odd in the taste department. Give me any food and I will find a suitable protein source to match it. Sad sad gyrl.

What has not got me shouting with glee is a week of very sore bone pain - me waking up to moan - it is not too good. Next week is the gastroman - I need that dexa. I got to do it. I hope to hell I don’t get a little shock…I know those calcium blood tests mean sweet zippo…but you want to believe ‘good results’…I do.
Anyway bones don’t ache for nothing though I have recently lost a little weight - neck looks scrawny - it might just be this. Jeez but I am good at denial eh!

My mum might be coming up in August for several weeks something I am looking forward to immensely. I hope to slip a few days in Turkey with her - she will love it I am sure. Pete is keen to take a break sometime too - but we are not sure quite how we are going to cohesively get everything moving.

I am hoping the weather holds as on Weds I am fetching my uncle & wife on consignment of ‘ lets do a day trip in London’…I don’t mind I never get tired of the London eye & a picnic in Hyde Park might be just the thing or maybe a pub lunch somewhere cosy.

A day of quiet contemplation in the aftermath. I have basked in having Pete close today - suddenly seeing the loss on the faces of people looking for loved ones on the streets of London brings home things. I am sad in a way that it’s against such a sad backdrop that I notice things with luminous intensity again. The way the roses are blooming, the translucent red of the maple leaves, incredible fine bark-like markings on a moths back. It would be better in a space where my heart was spilling over with joy. What is it about death & loss and sorrow that does this to one that opens the lucid doors and pathways in the brain? I don’t know, I just know it’s how I am right now.
Sometimes I feel like a giant kaleidoscope into which patterns and colours fall - one can make no sense of things but it is so beautiful one is transfixed…mesmerised.
I’d say it was sick but I think it is as if I am reminded to remember also the positive & beautiful aspects of life…or maybe it is just survival mechanisms kicking in to prevent a godawful deep depression.
For a brief moment I went back & thought - yus but what if YOU lost someone you loved - would you still be visited by such radient vision or would it all pulp down into a dull gray?
Then I remembered after my ouma (nan) died - how it was then - the same. Only I dreamed too. She came to me dressed in a gown made of the most beautiful flower fabric I have ever seen and she was smiling. She said ‘I am very happy - tell everyone.’ She was glowing and she looked years younger.

How strange that lately I have been listening to a song called ‘Red July’…sudenly it is highly appropriate. Pete got up early this morning - he kissed me goodbye I was half asleep & I just have a recollection of his warm hug and kiss and his voice ‘…off now’…and I am thinking tonight of how many others who will never see loved ones again will in days to come try to have the last recall of a goodbye. Crikey it is so sad.

Pete was heading for Moorgate station but they were told to get off at Mornington crescent - then he took a bus to Euston. This is where he called us from to say he had just heard a huge blast and would we go put on the telly. We sat together in the lounge the kids and me all of us watching the scenes of mayhem unfold before us like a bad dream. Even worse knowing our Pete was right there. Suddenly I wanted to say don’t get on any busses, watch bins, suspicious characters, please be careful. Suddenly one just feels nothing is safe anymore. We wait and wait anxiously together - my kids are pale and Luke cancels work incase he needs to fetch his dad. When the phone goes we all lunge at it to hear he is okay. I am baulking at the idea of both him and Pete in London. Beautiful London suddenly it seems a sinister place. I call friends to find out if their loved ones are safe. I still have not been able to connect with my young cousin who teaches in an innercity school in London. I pray he is okay. His family - my family are anxious about his safety.

Much later today Pete is safely home having walked a 3 hour walk to Waterloo station & caught a train home. I have never been more pleased to see his sweet face. He tells me of the sights he saw and says he feels he was far to close to it all for comfort. He worries he was on the blown up bus just prior to it and worries about the lovely busdriver who was so helpful to him. Later we know it was not the same bus and breathe relief…even so it’s awfully close - there but for the grace kind of stuff.

I turn deeply religious at times like this it is awful & I hate myself for it but there we go. God is probably okay with the idea that once in a while the lil lost lamb prays fervently.
We sit glued to the telly. It is horrific. Evil. Unspeakable. My thoughts are with all who have suffered in this terrible thing. May they have strength to cope. x
A Red July indeed.

Small update : my cousin is safe.

Friday.
Pete and I drive up to Bristol for the Rod Stewart Show. It is a nightmare ride - takes us almost 5 hours due to 2 road accidents. We are not in the best vibe by the time we hit the town with minutes to spare till the concert start. We check in at the hotel - catch a taxi to the stadium & are just in the nick of time. The show was fantastic. He is a great performer and at 60 he holds his own. His voice has not changed it’s still the same old gravelly number. Some nice songs and a good vibe among the crowd.
I am desperately hungry. I eat a punnet of chips and half of Pete’s vile hot dog. Bad stuff. The chips go down very slowly and I am wondering how come everyone else seems to think they are so delicious. It takes half an hour but they do go down.
After the show we hit further transport problems - the taxi drivers of Bristol - flush with the days pickings ferrying people to the concert have clearly decided in the main to go off home & watch the telly. Deep joy. We hover for an hour and a half to catch a ride back to the hotel. Eventually we do flag a taxi down - we feel like we hit the jackpot. Even the chips sitting miserably in my guts stop irritating me and go into the dank deep quarters of my bowels.
It was unimpressive how a city could just leave it’s guests without transport. Look at London and the Live 8 show - because it ran late they restarted the underground trains & distributed blankets and food & drinks to those who were waiting to go home. I’ll bet the taxis kept working too.
Anyway despite transport probs - we enjoyed the show, but lets say Bristol won’t be high on our entertainment agenda again.

Mulling on other things today. Thinking on DS & mind set. Thinking on how I stand my legs slightly apart - face up - defying convention. I won’t be told I have to take responsibility for something I perceive as a gift. (folding my arms around myself).

What is it about such a small word that gets me feeling fraught. I think perhaps words might mean more to me than to other people. I dunno. I have an intensity thing about words as a child words had colours for me. I have the darned dermographia as evidence that it goes deep in my very flesh & blood too ;-). So maybe just this. Or perhaps it is because I have seen what ‘responsibility’ does to people. It takes the joy out of everything. It has overriding connotations of ‘having to control’ …
Words I have learned have much more to them. They can be fraught with emotion. they can be fraught with manipulation. Responsibility is one such word in my book, though I accept for others it may have entirely different connotations and contexts.

I find other words such as ‘honouring’ much more to the point. I honour my DS. We are buddies DS & jane - interlinked and together on mission-obesity-remission. I don’t feel the weight (excuse the pun)of having to live my life along with the DS …for me it is an enlightening (aaargh another bad pun) experience. So - I honour it in a very simple way really.
I don’t feel the pill taking is a huge price to pay. Chips, cereal, breads - I can have em but they taste like cardboard most of the time…I don’t miss them.
I love the wondrous feeling that deep in me the DS is still working for me. I don’t feel I must ‘be any way’ or ‘do’ very much for this to occur and I concede here that this could well just be my quirky little world view but I am sticking with it.

I think that part of this - a very great part of this WLS journey is about changing the words that link us to perceptions and emotions. ‘Responsibility’ might work fine for some, but I am leaving it out of my world. There are much better words out there it would make my heart glad to see other WLS patients move towards them. I am also thinking on other words that trigger things for me - it’s a fun game and it gives me insights.

When I had my DS I wanted so badly - so very desperately to break with a history of dismembered fractured eating & foodstuff. I had fears - untold fears about food. I still see people base their surgery choice on these fears. (Hoping for dumping is often one of these fears.) I understand it… don’t get me wrong - I get it. But I also think there are options NOT to carry any patterns of the past into our bold new futures. I can’t quite find the words for it but I feel with the DS we have a real chance to dismiss a history of hatred, fear, food related stuff…come to think of it why not with the other WLS too? I don’t see why a RNYer cannot honour their surgery too or a bandster the same. It’s just so much gentler and kinder than this ‘taking responsibility thingie that turns me cold.

I often ponder this. Is it in my case that the signals that had eroded from so much fat muffling receptors in my bloodstream began to work. I think so. I think there has been a huge ‘righting’ of my internal mechanisms. It’s been a bit of a miracle for me I am sure I piss people off enthusing about it - but when one lands in the middle of a giant miracle it is very hard not to be an obnoxious over enthusiastic arsehole.

But concurrently I have not been idle. I spend time pondering and mulling. I spend time cruising around my head looking at my dirty linen & sometimes I air it. Other times I just note it is there. Perhaps the hugest thing for me was realising that dieting had completely screwed up my mind. Not just my body.
I have spent a lot of time undoing the damage in my head.
It has been interesting considering that 90% of the time the only idea of ‘normal eating’ is what little I have gleaned from those around me who have not had problems weight wise. We need role models you know. They are in damn short supply but even one guinea pig to observe at mealtimes will do.

I got an interesting e-mail from a DSer I am very fond of today. I can see she is about to open the door now to the headstuff - it’s quite interesting. She has concerns about her thoughts around food. She feels she is thinking a lot about food - too much. And there has been a little stretch too - it comes up for us at such times.
I understand this very well. I don’t know where it is written that the human being should not think about food? I think this is a matter of our very existence - that we think about what is key to our survival. In pre historic times we foraged, we stored foods and we thought about it probably even more than we do now. So that is not a problem per se.

When I traced my own overwhelming foodie thoughts back to the roots of it’s matter I found in my mind a litany of interesting diet related things that came up. First was the control thing. As dieters we should control everything all the time. I was hot on control for 3 days to 3 weeks in the main, then I would start to cheat and feel guilty. Points - no fat - high fat - calories - grams - slices of bread - control control control. Every diet has control as a basis. I used to try to control my food intake by not THINKING about food. Which had the bizarre effect of very much making me think about food desperately.

It would go something like this a kind of bizarre doublespeak: today I had 6 points -sausage roll. I had 3 points too early - chocolate. I only have 12 points left and it is only 10 am - pizza, snickers omg I could die for a cheesecake. Well, if I go very slow and try to fillup with water I can do this, hotdog, steak in cheese sauce, biscuits,pork pie. Yup that was me trying very hard not to think of food. All the time (perhaps of most importance) this is underpinned by that terrible fear that I am doomed forever to a life of willfull obesity. 3 days and then I would be in the shop and mysteriously by the time I was in my car I had in my bags: sausage rollS…pizza,biscuits, hotdogs,cheesecake - infact all the foods above plus some.

All over my head with each little stretch my DS gave me I would find deep roots that even now I am not 100% sure how they become untangled. I think a stretch can prompt fears and I urge all DSers to work through these fears and to free themselves for a happier time regarding food in the future. Re-write old scripts. Embrace all of this as part of coming to a point of psychological freedom too. Perhaps necessity is the mother of invention - and thing is that I was tired to the bone marrow of a life of desperation and despair. My DS was going to be my salvation & I knew to really cut it it would have to happen deeply on many levels. Oh and don’t get me wrong - you know I have often fallen badly into the mire of what is fact & what is fiction regarding food. I have eaten too much of the wrong stuff sometimes - I am no saint and I am very screwed up so if I can make some sense of things and get some resolve just think what others can do. Just think what you can do.

Some things stick with me. I learned that food is not the enemy. I learned that it is okay to think about food - just tweak it. Instead of thinking about it in fear and with horror - think about how it can do your new body true justice. Add to that how you will make it taste great too in a healthful way & with the DS you can have as many creamy & delicious sauces as you like to make it taste great! There is no excuse not to indulge your sense of taste.
Think about food by all means write poetry about it if you like it is a great part of the daily human experience - and remember it is NEVER going to run away. We DSers can have it - that pizza - that choccy - that whatever - we can have it now.
But because we honour our surgery and how it cares for us - it is in our interests not do this ongoingly in a destructive manner. I think sometimes all of us should take a vow before we have our surgery that we will honour it. And it is not a difficult thing to honour it either - it provides definite perimeters - it provides a change in tastes for some of us and it also takes care of raging appetite syndrome. In year one it gives the benefit of a strong restriction too. Even now it is my darling old nanny. I eat too much it tells me. I eat too much crap, it tells me. I eat well it tells me.

Other things - I learned that contrary to the BS written about it everyone comfort eats except the incredibly anal. And they need therapy. If one does not comfort eat to a degree then therapy is a must. I have seen this - normal weights reach for the ice cream & scoff the lot everyone thinks it is so quaint - ‘gee you really love that ice cream - good on you matey would you like the other tub too?’. Fat girl(me) scoffs the ice cream - ‘omg it is DISGUSTING! You are a pig and I am not going to even tell you I have another tub stashed away!’
So it goes. Observe.

(OT - I was shocked to the core the first time someone actually pushed a plate of food at me and beckoned that I help myself to a second helping. I was shocked because I absolutely never ever recall anyone even offering me firsts let alone seconds of some food when I was bigger.)

So strange. Once I realised it really really REALLY is fine to comfort eat once in a while I stopped needing to do it very often. It’s like for me the food is there - I need it I can have it. It has lost it’s entire poison. And often very often I can have five tablespoons of the food of my desires and it is so good but just right. No need to continue. Tomorrow is another day. I feel no compulsion to keep on at it till my guts aches and I am in a dreadful mental pain. Also there is a point my whole being says ENOUGH very loudly - if I push beyond that it switches from a lovely warm muted laidback sense of warmth in my gut to a sudden distension - a hard edged feeling of stress and pain and turns into anything BUT comfort. And I don’t like it the way I used to almost revel in my body imparting discomfort signals. It is not funny - it is very very harsh - a big thawk. I don’t play with it.

In my final year when the morbidness of my obesity began to choke every aspect of my entire being like a dark destructive shroud - I used to eat sometimes right to the point of pain and past it - I look back and wonder why?
I think perhaps I was trying to ‘feel’ my food any way that I could. Perhaps I was trying ‘to get my bodies attention’ in the same way that a child sometimes will do something even if he knows it will bring negativity. At least there will be attention.
I don’t fully comprehend it. I think too there was a self harm element in it - a deep hatred of myself and my reliance on food - I could flog myself with it. I could injure and torture and punish myself where no one could see the visible evidence. I am so sad even now for that self that I was on these levels. Wretchedly sad.

I think it’s interesting because once I went to a behavioural therapist. It was a group set up and the thing was similar - in a bid to help us correct our psychology she said to us to have comfort food if we wanted. I went home and ate 3 punnet’s of biscuits in a row plus two chocolates and then I cried for about seven hours.
The next day I ate a tub or two of sweets and a large packet of crisps. I wept again and consoled myself guiltily with a very substantial piece of lemon meringue pie followed by another about an hour later. I cried even harder when we did the weigh in the following week. It was clear the therapy was not working for me & I could not for the life of me work for it.

So I don’t think one can do this under the circumstances of being obese and the cock up of the bodies resources unfortunately. I could not comfort eat. I could only binge and this was something way out of my control.

I believe the DS has given me the freedom to comfort eat in the proper context of the words. I believe it boils down at the very basis of it a firm physiology at last - a working body & mind in a synergy.

Well enough - these are part of a looong process - an evolution really and I have squeezed it into a short essay. But I never thought it could ever happen for me. I never thought I would reach a place of great comfortability with food. One down one to go. I only wish I could reach a space of great comfortability about myself & my body. Perhaps this is not for one lifetime only.

Saturday:
A pottering day - we drive down from Bristol the traffic is easy. At home we loll a little - watch live8. What a fantastic show. I am just pleased that the money will not be given to countries in Africa that are run by corrupt govermenments. At the same time I do wonder what parts of my beautiful Africa exactly are free of this???
Mmmmm…what do these wealthy men posing in garb of hippydom truly know. They visit my country and are entertained royally. They stay in the best hotels eating the best food at night - the next day they are caught on camera holding a young child on deaths door pity etched accross their faces. No doubt it is sincere but I am afraid to know Africa you must live there. You must taste the whole screwed up set up and understand your mind has different workings from us that have lived through the mire of Africa. Still I am touched as a white African that people are willing to try.
But will it boil down to more or less corruption?
How good it would be to see diseases cared for - hunger relieved etc. Alas I fear it shall be the fat cats in Government buying more fancy jets, cars and other such material trappings of importance while the ordinary people continue to suffer. I wonder. I think on how we used to send the lady who worked for us kids money every month so we should know they would be fed and clothed and educated. It was still a sad situation that these kids mom had to leave the countryside that was fraught with poverty and come to the city to work - evil really, but we tried to make the best of a shite situation. She went home some months later and phoned me - the children were all starving she told me. She was frantic. Good god I said - but what happened to all the money we had sent to ensure they would be cared for? It turned out the grandparents and other elders had used the money for themselves leaving the vulnerable & helpless kids to slowly starve.
Desperation has no compassion or benevolence in my sweet Afrika.
I do not know what it is that kills love there. I do not know how you leave an innocent baby to die from starvation when money has been sent to prevent that. Perhaps extreme hunger does that.
I said - pack them up & bring them back with you. She returned, three starving kids in tow to live with us. The youngest arrived, a wee baby on death’s door. It was awful the degree of kwashiokor. We nearly lost him.
Still - it is true something must be done and we have to try everything even if in the end it has the same outcome as before in Africa…ie the poor see nowt the rich enjoy the great wealth bestowed on them. We still have to try.
When I took that dying baby for treatment the first doctor I saw told me he was doomed to die anyway. He would not treat him. I took the child to a second doctor who flew into fast action that saved Dumela’s life. He went on to give us all great joy & I loved that little boy very dearly. So I believe in at least trying.
Yes, it shall be interesting to see what happens in the days to come…