Had one of the bestest days yesterday; my first day of half term! I woke up at 5am (body clock just won't adjust to lie in mode) and felt surprisingly good. I spent most of the morning looking into 'closed landscape' photography and then met my Mum for coffee in our local cafe. I managed to eat some biscuits and yoghurt at lunchtime and then met Ned for a quick pint and a catch up. At 3.30pm Z picked me up and we drove into Gloucester to see Monty Robert's Horsemanship show which was absolutely amazing. It made me so sad to see some of the fears horses have developed due to mishandling my humans but incrediable to see how Monty relieved them of their fears using gentle and trustworthy methods. It was truly elating to see how the world and people are changing, to become more compassionate and understanding to our equals. Truly amazing. We got home just after midnight which is probably the latest I have stayed up intentionally for months!
Still heard nothing from the hospital so the waiting continues. I've lost a teeny bit of weight the past few weeks but nothing drastic (well, no moreso than it already is at least) and am just getting in what I can at the moment - good days and bad days.
Thanks to those of you who have offered continual and constant support - you know who you are and when things are better, I'm having a big party - and you're all invited.
Nolite te bastardes carborundorum.
All my love,
Zigz. xxxxx
Saturday, 23 October 2010
TAG: When I'm at my best
TAG: When I'm At My Best
Do this tag as well!
I wear (clothes): Lolita dress (black, red and white) over knee chunky socks and New Rock boots
I wear (perfume): Karma by Lush
I wear (make-up): Black and white eyeshadow, lots of eyeliner, thick mascara, lots of blusher. Dark plum lipstick
I style my hair: in two top bunches with ribbons to match my dress
I listen to: David Bowie - Young Americans
I create: Lots and lots of photographs
I think about: The present, the future and my fantastic friends
I talk to: Mummy, Ned, Z, Les and whoever else will listen
I spend time with: a glass of wine in my hand
I eat: Chocolate
I drink: Carlsberg, white wine or Jack Daniels
I read: any autobiography
I watch: University Challenge
I sleep: 10 hours
I play: My bass guitar- badly
To really treat myself: Spending time with the horses then an evening gossiping and drinking with my best friend followed by a cosy bottle of wine with my boyfriend
Saturday, 16 October 2010
Mid October Update
Hellowa! Just a quick update because I don't really have very much to say (as hard as you may find that to believe!)
I had an appointment with my consultant on Monday and he showed me the letter from Professor Epstein in London and we talked about his recommendations to feed via NJ tube. Apparently I'll be in hospital about a week so that the necessary rate (60-90ml per hour) can be achieved then I'll be sent home with directions on how to feed at home. The aim is to get the rate high enough so that I only need to feed over a 12 hour period which shouldn't disrupt my life too much. I'm currently waiting for a bed in Gloucester Royal and the necessary tubing to be ordered so it could be anyday.
College this week has been pretty manic in order to reach the assignment deadline (which was yesterday) fortunately managed to get all my work in on time but as usual (being a work perfectionist) I still felt I could have done more but have learnt to know when to stop. I also had a tutorial yesterday with my personal tutor who said I should be aiming for a distinction in this subject - it makes me feel good to aim high. In the afternoon I presented my work to the tutors and class which was pretty nerve wracking - I always get anxious when speaking in class but managed to hide it pretty well. My tutors said that the images are rather 'flat' and I'm let down by my technical ability - I'm the first to hold my hands up and say "I don't know what the 'eck I'm doing" so this was a totally fair point and something I REALLY need to work on. I've been focusing greatly on the creative element rather than the technical so I need to shift focus a little. So, plan for this weekend - learn some technical blip blop and put it into practice!! I've got 3 days off now so need to use them productively!
My stomach is really not behaving itself at the moment - it really seems to hate me. I've absolutely HAD IT with liquid supplements so am surviving soley on biscuits and crisps which, if I only eat a little at a time, seems to go ok. The key seems to be to not allow myself to get too hungry so I eat more than a couple of bites because I know if I do, I'm in the danger zone and may as well wipe out the day.
Plenty of things to look forward to at the moment, going to see Dream tomorrow,Z is taking me to see Monty Roberts next Friday (coincides nicely with a day off college) and the following week is half term - highly likely I'll be spending it in hospital but I'd rather than than miss college (yes, really!) Feeling far more positive about the tube now and can't wait for my energy levels to improve - I tried to run yesterday as I was late for college and almost collapsed into the road. Safe to say I won't be trying that again! I'll leave you with the amusing image of little me, with an enormous bag of books trying to run - I wish I could have seen it myself!
Until next time, take care of yourselves my lovelies and feel free to message me anytime!
xxxxxxxxx
I had an appointment with my consultant on Monday and he showed me the letter from Professor Epstein in London and we talked about his recommendations to feed via NJ tube. Apparently I'll be in hospital about a week so that the necessary rate (60-90ml per hour) can be achieved then I'll be sent home with directions on how to feed at home. The aim is to get the rate high enough so that I only need to feed over a 12 hour period which shouldn't disrupt my life too much. I'm currently waiting for a bed in Gloucester Royal and the necessary tubing to be ordered so it could be anyday.
College this week has been pretty manic in order to reach the assignment deadline (which was yesterday) fortunately managed to get all my work in on time but as usual (being a work perfectionist) I still felt I could have done more but have learnt to know when to stop. I also had a tutorial yesterday with my personal tutor who said I should be aiming for a distinction in this subject - it makes me feel good to aim high. In the afternoon I presented my work to the tutors and class which was pretty nerve wracking - I always get anxious when speaking in class but managed to hide it pretty well. My tutors said that the images are rather 'flat' and I'm let down by my technical ability - I'm the first to hold my hands up and say "I don't know what the 'eck I'm doing" so this was a totally fair point and something I REALLY need to work on. I've been focusing greatly on the creative element rather than the technical so I need to shift focus a little. So, plan for this weekend - learn some technical blip blop and put it into practice!! I've got 3 days off now so need to use them productively!
My stomach is really not behaving itself at the moment - it really seems to hate me. I've absolutely HAD IT with liquid supplements so am surviving soley on biscuits and crisps which, if I only eat a little at a time, seems to go ok. The key seems to be to not allow myself to get too hungry so I eat more than a couple of bites because I know if I do, I'm in the danger zone and may as well wipe out the day.
Plenty of things to look forward to at the moment, going to see Dream tomorrow,Z is taking me to see Monty Roberts next Friday (coincides nicely with a day off college) and the following week is half term - highly likely I'll be spending it in hospital but I'd rather than than miss college (yes, really!) Feeling far more positive about the tube now and can't wait for my energy levels to improve - I tried to run yesterday as I was late for college and almost collapsed into the road. Safe to say I won't be trying that again! I'll leave you with the amusing image of little me, with an enormous bag of books trying to run - I wish I could have seen it myself!
Until next time, take care of yourselves my lovelies and feel free to message me anytime!
xxxxxxxxx
Saturday, 2 October 2010
October already!
Hellowa and Happy October!
Just a quick update since I'm really tired today and trying very hard to get on with some work though not feeling particularly motivated today despite deadlines looming.
Unfortunately I missed some college this week due to poorliness which made me feel really rather miserable; I love being at college since it makes me forget about all the evil health issues which are going on right now and even seems to improve my appetite a little, so taking a few days off was pretty crap. Felt ok enough to go in yesterday and found I had an enormous amount to catch up on so that's how I plan to spend the weekend - pretty much chained to my desk!
I have a gastroenterology appointment a week Monday when we are going to discuss the options of NJ tube feeding; I have to admit, the closer it comes, the more nervous I feel. I know it's something that needs to happen but I'm scared- more about the insertion itself than anything else. Because last time it didn't work in endoscopy and I was barely sedated they are going to try again with 'different equipment' - I'm obviously unsure what this entails but I'll have the opportunity to ask at my appointment I guess. All the same, I'm trying not to think about it too much or I'll drive myself mad.
I've also been thinking recently about how this illness has affected everybody around me; my family, my boyfriend and friends. I think I've allowed myself to become so consumed by my own stomach (now there's a thought) that I haven't really thought about anyone else. Of course I've appreciated their support throughout and expressed it but this is the first time I've thought about how they must feel. It's made me wake up a little I must admit and realised I've probably become a bit of a slave to gastroparesis; I need to take control. It doesn't have to be my main source of conversation and although it's always going to play a part in what I can or can't do it doesn't have to change who I am and make me a weak and boring person. I guess I just need to regroup and take others into consideration a little more when I prattle on about how crap I'm feeling. Gastroparesis is not the centre of the universe. And neither am I.
Just a quick update since I'm really tired today and trying very hard to get on with some work though not feeling particularly motivated today despite deadlines looming.
Unfortunately I missed some college this week due to poorliness which made me feel really rather miserable; I love being at college since it makes me forget about all the evil health issues which are going on right now and even seems to improve my appetite a little, so taking a few days off was pretty crap. Felt ok enough to go in yesterday and found I had an enormous amount to catch up on so that's how I plan to spend the weekend - pretty much chained to my desk!
I have a gastroenterology appointment a week Monday when we are going to discuss the options of NJ tube feeding; I have to admit, the closer it comes, the more nervous I feel. I know it's something that needs to happen but I'm scared- more about the insertion itself than anything else. Because last time it didn't work in endoscopy and I was barely sedated they are going to try again with 'different equipment' - I'm obviously unsure what this entails but I'll have the opportunity to ask at my appointment I guess. All the same, I'm trying not to think about it too much or I'll drive myself mad.
I've also been thinking recently about how this illness has affected everybody around me; my family, my boyfriend and friends. I think I've allowed myself to become so consumed by my own stomach (now there's a thought) that I haven't really thought about anyone else. Of course I've appreciated their support throughout and expressed it but this is the first time I've thought about how they must feel. It's made me wake up a little I must admit and realised I've probably become a bit of a slave to gastroparesis; I need to take control. It doesn't have to be my main source of conversation and although it's always going to play a part in what I can or can't do it doesn't have to change who I am and make me a weak and boring person. I guess I just need to regroup and take others into consideration a little more when I prattle on about how crap I'm feeling. Gastroparesis is not the centre of the universe. And neither am I.
A photograph from this week (a portrait of Ned)
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