Hello!
Right, first things first, weekly weigh in time! This week I have surprised myself by putting on 0.7kg in one go! When I started "project get fat" i was 42.6kg and now I am 44kg. I have checked this weight twice and it does seem as though its correct, although how ive managed it is a mystery to me! You can actually see that I've gained weigh now, I'm not fat (yet) but its really weird for me to see the difference. I feel quite tubby but i suppose being so skinny has distorted my vision. Anyway I'm not complaining. I phoned Harefield to let them know and they were very pleased with my progress so thats another good thing. My plan is that now I have gained quite a bit I will start to ease off just a tiny bit in order to give myself a bit of a rest, while still putting on some weight but at a slower rate. It will take a bit of balancing to get this right but hopefully i should get there. Thanks again for all your support which keeps me going, i couldnt do it without you all :)
I've still been quite moody this week and you very nearly got an earfull when I was in one of my "black moods" but in the end I didnt blog and felt a bit better the next day. I also recieved a lovely surprise through the post which cheered me up no end. A lovely friend with Cf who I chat to online sent me a beautiful balloon in the hope it would make me smile which it definately did. So thank you very much Jess! The balloon also had disney princesses n it which made it even nicer. I sent her a photo of me with said balloon wearing a tiara, ill try to put it on here soon.
I have also heard from my new course tutor who weirdly enough lives in the next street to me! He seems really nice and eager to help, and without speaking to soon the new course seems quite easy going compared to my others (remind me of this when im having trouble with an essay). Next week I have my exam for my current course which I am frantically revising for at the moment.
Not much else has happened really, yesterday was nice as we managed to get out for the day. We drove up to Greenwich, its a great place with a really cool craft market (which is too tight to ge round by wheelchair so i had a very short slow walk round some of it). Then we walked along the river and had some chips in the sunshine. It was also handy as being in the fresh air meant less worry about catching coughs and colds which is a danger for me at present.
Anyway will close now and update again soon. Hope your all doing ok and keeping smiley.
xxxx
Sunday, 28 September 2008
Friday, 19 September 2008
Ahoy there me hearties!
Ahoy!
Today is International Talk like a Pirate Day (yes it is a real day and not something i have made up). Its a day to celebrate all things piratey and to talk pirate talk, cue lots of "Arrrgghh's" "landlubbers" and "shiver me timbers"! I didn't know anything about pirates day until a few months ago when a very good friend Rich, told me about it. He quite fancy's an alternative life as a pirate leading a life on the ocean waves! and has even managed to get me on board.
Anyway its his influence which is why i will be lapsing into pirate talk during the day and have a strong urge to buy a parrot and an eye patch ;) Why don't you try piratey fun by clicking here! (How clever am I at adding links! )
On other non pirate related news, I have done my weekly weigh in 2 today. I have gained again but only by 0.2 kg, which I must admit is a bit disappointing. However as everyone is keen to point out, it has gone up and i can't expect it to pile on all at once.
I'm still eating as much as I can which isn't going too badly but is making me feel a bit down. At the moment all I seem to do is eat, take medication, do physio/nebs, feel the after effects of eating with a stomach thats not keen on food eg sickness, nausea, stomach cramps, check blood sugars etc. This is how its always been but with the addition of all this extra stuff lately and the fact that I can't do very much else outside the house its quite draining.
Its been made even more hard as I miss all the things I can't do easily at the moment. My sister and her family have gone away to Florida for 2 weeks (after waking up on the day they were supposed to fly to hear their airline had gone bust and having to make alternative arrangements for a few days time). My sis, her partner and their son have gone along with her partners parents, last time me and my parents went in place of Stuarts parents. As you can imagine we all wish we were there with them, and although we are glad that they can go away it also reminds us once again that we can't. It is so hard to get up to the theatre at the moment as i get so tired and have to take all my wheelchair,oxygen, etc with me (I miss it a lot). Even cinema and restaurant trips are getting harder.
In light of this I have made a decision. With my Open University course finishing soon I will soon be without anything pressing to do each day. I have noticed lately that if I wake up and have no plans for the day, nothing that needs to be done, I get very depressed. It kind of makes me think "why bother getting up at all?" so in light of having some very depressed days this week and a lot of thinking, I have applied for another course starting this October. Its only a level 1 course so shouldnt be too taxing but is another step on the road to a degree so I think its the right decision to start it now. Its also slightly different to my other courses and focuses on society and social science. I think this is a positive step for me even if its not quite what i planned.
So anyway, Godspeed ye' scallywags! Don't be walking the plank any time soon, enjoy thee weekend and drink copious amounts of rum! YARR! xxx
Today is International Talk like a Pirate Day (yes it is a real day and not something i have made up). Its a day to celebrate all things piratey and to talk pirate talk, cue lots of "Arrrgghh's" "landlubbers" and "shiver me timbers"! I didn't know anything about pirates day until a few months ago when a very good friend Rich, told me about it. He quite fancy's an alternative life as a pirate leading a life on the ocean waves! and has even managed to get me on board.
Anyway its his influence which is why i will be lapsing into pirate talk during the day and have a strong urge to buy a parrot and an eye patch ;) Why don't you try piratey fun by clicking here! (How clever am I at adding links! )
On other non pirate related news, I have done my weekly weigh in 2 today. I have gained again but only by 0.2 kg, which I must admit is a bit disappointing. However as everyone is keen to point out, it has gone up and i can't expect it to pile on all at once.
I'm still eating as much as I can which isn't going too badly but is making me feel a bit down. At the moment all I seem to do is eat, take medication, do physio/nebs, feel the after effects of eating with a stomach thats not keen on food eg sickness, nausea, stomach cramps, check blood sugars etc. This is how its always been but with the addition of all this extra stuff lately and the fact that I can't do very much else outside the house its quite draining.
Its been made even more hard as I miss all the things I can't do easily at the moment. My sister and her family have gone away to Florida for 2 weeks (after waking up on the day they were supposed to fly to hear their airline had gone bust and having to make alternative arrangements for a few days time). My sis, her partner and their son have gone along with her partners parents, last time me and my parents went in place of Stuarts parents. As you can imagine we all wish we were there with them, and although we are glad that they can go away it also reminds us once again that we can't. It is so hard to get up to the theatre at the moment as i get so tired and have to take all my wheelchair,oxygen, etc with me (I miss it a lot). Even cinema and restaurant trips are getting harder.
In light of this I have made a decision. With my Open University course finishing soon I will soon be without anything pressing to do each day. I have noticed lately that if I wake up and have no plans for the day, nothing that needs to be done, I get very depressed. It kind of makes me think "why bother getting up at all?" so in light of having some very depressed days this week and a lot of thinking, I have applied for another course starting this October. Its only a level 1 course so shouldnt be too taxing but is another step on the road to a degree so I think its the right decision to start it now. Its also slightly different to my other courses and focuses on society and social science. I think this is a positive step for me even if its not quite what i planned.
So anyway, Godspeed ye' scallywags! Don't be walking the plank any time soon, enjoy thee weekend and drink copious amounts of rum! YARR! xxx
Sunday, 14 September 2008
Weekly weigh in 1
Quick update just to let you know my progress. First weekly weigh in was on Friday, same sort of clothes that i wore to Harefield, no shoes, no coat, verified by two sets of scales (im a stickler for accuracy!). I have gone up by the grand total of half a kilo in ten days! Im really pleased with this and am desperate to keep it up.
Proper blog soon just wanted to let you all know.
xxxxx
Proper blog soon just wanted to let you all know.
xxxxx
Wednesday, 10 September 2008
"project get fat"
Hello! Aren't you shocked that I'm blogging midweek?
Thank you, as always for the support you've given me, I am very lucky to have such lovely friends.
I am still reeling a bit from my Harefield visit but am really trying to focus my energy into eating as much as possible rather than feeling upset or depressed. Getting the weight on is going to be a very long slow process (because of my bad health my body uses lots of calories just staying alive) but as long as it is going the right way and I'm trying as hard as possible thats all I can do. I am managing to pack quite a lot of food down my face each day so will hopefully see a tiny improvement in Fridays weekly weigh in.
Anyway I thought I would update with some bits and pieces that I haven't had chance to blog about yet. First of all, I have finished my last essay for this course now and got 75% which I was rather pleased with! I now have an exam on October 6th, and then that will be my second course complete. If I pass, that will mean I am 1/3 of the way through my degree, I'll be taking some time off over xmas and then starting a new course in February.
The week before my Harefield visit I had a lovely day at my friends house being pampered. Lindsay is a hairdresser/beauty therapist and very good at it too! I went to her house for the day and was treated to a facial (absolutely AMAZING), a pedicure, and a hair cut. She also made me a yummy lunch of all my favourite foods and gave me a goodie bag to take home!!! I had a wonderful day, it was so relaxing and good to feel so pampered. Linds is a great friend and I couldn't believe how much thought and effort she had put in to making it special. From the order of treatments (so i didn't have to lay down after lunch or keep walking up and down the stairs) to the perfect lunch every detail was considered. Thank you again to my wonderful friend, she really is a complete star!
I have also thought of some additions to the wish list. I would like to add.....
A ride on a motorbike
Lots more rollercoasters ( I love them!)
Join an amdram group
Win a local drama award
Thats all for now, as I think of things Ill let you know! I'll also keep you posted on "Project get fat" as my friend so aptly calls it! ;)
Keep smiling and being your lovely selves.
xxx
Thank you, as always for the support you've given me, I am very lucky to have such lovely friends.
I am still reeling a bit from my Harefield visit but am really trying to focus my energy into eating as much as possible rather than feeling upset or depressed. Getting the weight on is going to be a very long slow process (because of my bad health my body uses lots of calories just staying alive) but as long as it is going the right way and I'm trying as hard as possible thats all I can do. I am managing to pack quite a lot of food down my face each day so will hopefully see a tiny improvement in Fridays weekly weigh in.
Anyway I thought I would update with some bits and pieces that I haven't had chance to blog about yet. First of all, I have finished my last essay for this course now and got 75% which I was rather pleased with! I now have an exam on October 6th, and then that will be my second course complete. If I pass, that will mean I am 1/3 of the way through my degree, I'll be taking some time off over xmas and then starting a new course in February.
The week before my Harefield visit I had a lovely day at my friends house being pampered. Lindsay is a hairdresser/beauty therapist and very good at it too! I went to her house for the day and was treated to a facial (absolutely AMAZING), a pedicure, and a hair cut. She also made me a yummy lunch of all my favourite foods and gave me a goodie bag to take home!!! I had a wonderful day, it was so relaxing and good to feel so pampered. Linds is a great friend and I couldn't believe how much thought and effort she had put in to making it special. From the order of treatments (so i didn't have to lay down after lunch or keep walking up and down the stairs) to the perfect lunch every detail was considered. Thank you again to my wonderful friend, she really is a complete star!
I have also thought of some additions to the wish list. I would like to add.....
A ride on a motorbike
Lots more rollercoasters ( I love them!)
Join an amdram group
Win a local drama award
Thats all for now, as I think of things Ill let you know! I'll also keep you posted on "Project get fat" as my friend so aptly calls it! ;)
Keep smiling and being your lovely selves.
xxx
Thursday, 4 September 2008
A weighty issue
There were a lot of things that I wanted to write about today.I have some additions to make to my Transplant Wishlist, and to share a lovely day I had last week courtesy of my best friend, but I think they will have to wait till next time now as there are more pressing matters .
Yesterday was my 6 monthly check up at Harefield, which involved a very long day and lots of tests. Despite being on the list for 14 months I have somehow managed to miss out on meeting the head transplant doctor (Dr C) until yesterdays visit. He seemed a very nice man and someone who is very fair and personable, I think that I would feel very safe under his guidance and get on well with him.
However yesterday he had to tell me some pretty harsh informaion which I'm still finding very hard to deal with today. Basically, my weight has declined slowly again and I desperately need to put on some weight soon or I will be removed from the active transplant list.
The Dr laid it on the line to me. In his words, at my current weight, "I am seriously increasing my chances of not surviving the post operative period". In order to survive such huge surgery and the possible complications in ICU I need to be a much higher weight than i am now, and give myself (and him) a chance to get me through it.
Thankfully, he has NOT removed me from the list at this time(something I am unspeakably grateful for), but wants me to let them know if there is any change in my weight status. I am on very thin ice.
As I left the consultation room I began to cry and have been on and off ever since. I'm not in any way blaming him for expressing the facts so plainly, it is his duty of care to tell me the facts and severity of the situation. It is unbelievably hard to cope with though.
For my whole life, keeping well has always been my top most priority, I can count on one hand the times over my 21 years when I have missed physio or tablets. 90% of my day is dedicated to tretments, etc. At this time especially, my reason to get up each day is to keep well until my transplant, I cannot begin to describe how much it means to me. The numbers of my lung function speak for themselves, I am in dire need of those lungs to come very soon.
I know many people would think "thats simple, just eat more" or list fatty foods or supplements to gain weight, you would be forgiven for doing so. However, you have to know my situation to fully understand it. For many many years I had problems with my tummy and have always had trouble putting on weight right from the word go. I would be vomiting well over 15 times a day, Every Single Day.
After years of testing I am now on a cocktail of drugs which help a lot, but eating is still very difficult for me as I get full extremely quickly, and many rich,fatty foods make me sick or ill. My stomach dr is fantastic but with the best will in the world, he cannot provide drugs that aren't available, (there were several tablets that made a huge improvement but they were removed from the market as "too high risk").
Overnight feeding may be an option but for various personal reasons, I dont think this would be a viable answer for me. I know it sounds as though I am being intentionally difficult and awkward but I am the one who has had to deal with my stomach problems on a daily basis and after all these years, I know better than anyone what would help me to gain weight and what would simply cause more problems.Therefore typical weight gaining tips are not necessarily an option for me, and makes gaining weight nigh on impossible.
I am feeling pretty numb today. Although I knew all the facts, hearing them was one of the hardest things I've ever had to hear. I know that I have been trying as much as posible but I still feel as though I have let myself down in some way. I am determined to improve my weight and hopefully I will get there in the end. My life seems to be breaking down at the moment and as fast as I try to sort one thing something else becomes a problem.
I only have to cast my mind around to find people in worse situation to me. It helps to put things in perspective and to count my blessings.
In the meantime I will keep on trying my very best with renewed effort and keep you informed of my progress.
Sorry for the bad news.
xxx
Yesterday was my 6 monthly check up at Harefield, which involved a very long day and lots of tests. Despite being on the list for 14 months I have somehow managed to miss out on meeting the head transplant doctor (Dr C) until yesterdays visit. He seemed a very nice man and someone who is very fair and personable, I think that I would feel very safe under his guidance and get on well with him.
However yesterday he had to tell me some pretty harsh informaion which I'm still finding very hard to deal with today. Basically, my weight has declined slowly again and I desperately need to put on some weight soon or I will be removed from the active transplant list.
The Dr laid it on the line to me. In his words, at my current weight, "I am seriously increasing my chances of not surviving the post operative period". In order to survive such huge surgery and the possible complications in ICU I need to be a much higher weight than i am now, and give myself (and him) a chance to get me through it.
Thankfully, he has NOT removed me from the list at this time(something I am unspeakably grateful for), but wants me to let them know if there is any change in my weight status. I am on very thin ice.
As I left the consultation room I began to cry and have been on and off ever since. I'm not in any way blaming him for expressing the facts so plainly, it is his duty of care to tell me the facts and severity of the situation. It is unbelievably hard to cope with though.
For my whole life, keeping well has always been my top most priority, I can count on one hand the times over my 21 years when I have missed physio or tablets. 90% of my day is dedicated to tretments, etc. At this time especially, my reason to get up each day is to keep well until my transplant, I cannot begin to describe how much it means to me. The numbers of my lung function speak for themselves, I am in dire need of those lungs to come very soon.
I know many people would think "thats simple, just eat more" or list fatty foods or supplements to gain weight, you would be forgiven for doing so. However, you have to know my situation to fully understand it. For many many years I had problems with my tummy and have always had trouble putting on weight right from the word go. I would be vomiting well over 15 times a day, Every Single Day.
After years of testing I am now on a cocktail of drugs which help a lot, but eating is still very difficult for me as I get full extremely quickly, and many rich,fatty foods make me sick or ill. My stomach dr is fantastic but with the best will in the world, he cannot provide drugs that aren't available, (there were several tablets that made a huge improvement but they were removed from the market as "too high risk").
Overnight feeding may be an option but for various personal reasons, I dont think this would be a viable answer for me. I know it sounds as though I am being intentionally difficult and awkward but I am the one who has had to deal with my stomach problems on a daily basis and after all these years, I know better than anyone what would help me to gain weight and what would simply cause more problems.Therefore typical weight gaining tips are not necessarily an option for me, and makes gaining weight nigh on impossible.
I am feeling pretty numb today. Although I knew all the facts, hearing them was one of the hardest things I've ever had to hear. I know that I have been trying as much as posible but I still feel as though I have let myself down in some way. I am determined to improve my weight and hopefully I will get there in the end. My life seems to be breaking down at the moment and as fast as I try to sort one thing something else becomes a problem.
I only have to cast my mind around to find people in worse situation to me. It helps to put things in perspective and to count my blessings.
In the meantime I will keep on trying my very best with renewed effort and keep you informed of my progress.
Sorry for the bad news.
xxx
Tuesday, 2 September 2008
Quickie!
Hi this is just a very quick note to let you all know that I'm still here but have been quite busy (although not sure what with...) so havent been able to update the blog when I intended to.
I'm up to Harefield for a 6 month check up tomorrow so any prayers and positive thoughts will be much appreciated. We have to leave before 9am (not easy with treatment and me functioning at a snails pace!) so have to get as much ready tonight as possible. Anyway I promise a long update before the week is out!
Hope your all having a good week
xxxxx
I'm up to Harefield for a 6 month check up tomorrow so any prayers and positive thoughts will be much appreciated. We have to leave before 9am (not easy with treatment and me functioning at a snails pace!) so have to get as much ready tonight as possible. Anyway I promise a long update before the week is out!
Hope your all having a good week
xxxxx
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