I had a clinic appointment recently and the Dr sat down and said that she needs to have a serious discussion with me but shes not pushing anything on me and that whatever my decision is they will respect that and help me in any way they can. I instantly knew it was about my weight and about the PEG so i prepared myself for an ear bashing about not eating enough and that i need to try harder etc etc...
But it didnt come! I was shocked, the Dr was really nice about it and she showed me the chart of my weight tracking since i joined them and it was shocking to say the least!
I was in 2009 around 54kg and since then with each infection getting worse and taking more of a toll on me, my weight is whats been suffering the most. I knew that it wasnt the best it could be or should be, but i didnt realise it was THAT bad. Its like ive been slowly disappearing and not realised it really.
So she discussed my options with me.
Option 1 :- To carry on as im doing so and just eat as much as i can and include a range of supplements as well. I can manage one supplement a day at the moment and use Polycal in most things i can, but i want to be having at least 3 supplements a day to give myself a chance. But it was made clear that if i chose this option that i would need to be having at least a minimum of 6 supplements a day plus my ordinary meals and snacks. This didnt seem realistic to me at all!
Option 2:- NG Feeding. This was right out the window from the start. I cant handle the thought of passing a tube up my nose and so i just wouldnt be able to actually do it. So thats two options out the window really.
Option 3:- I knew what this one was going to be. This was the PEG.
I have had lengthy discussions with the dietician about this and i nearly had it done in March. I was halfway there on the train and they rang me to say my bed has been cancelled and not to bother coming in. They had known this all day and decided now to ring me when they knew i would be travelling in. We went home and after lengthy phonecalls and people being so inept at communication i cancelled the whole thing and told them to forget about it.
I felt like it was fate telling me i didnt need it done and as i wasnt 100% about happy or wanting to have it done i felt it was the right thing to do at the time to cancel it.
Now i feel that it is my only option and so i have made the, for me, rather huge decision to have another go at having it done. This time i think it will go ahead as its fairly urgent now.
The Dr said if my weight drops any more and my lung function in turn gets worse that i am referred for being considered for a transplant, that they wouldnt even look at me due to my weight being so low. This scared me as i dont want to ever be in the position of needing a transplant, (though i know it is still possible with this disease being so unpredictable) and them turning me away for my possible second chance just because i cant keep myself weighty enough.
So after discussion with mum i decided i am going to have the PEG done. I rang the hospital on the Thursday last week to say i will go ahead with that option and the Dr has sent off my referral to the Endoscopy team. So its just a matter of waiting for that to be sorted now and then a plan of action wil be made for me to go in for a few days before the procedure for some IVs. I will stay for a while after the procedure as well to make sure my IVs are doing the trick and i am fully trained to manage my PEG at home.
I discussed my fears with the Dr then and there and for once i felt like she understood them! Anyone else ive told on the team ive always felt like they have just thought im being rediculous and to stop being so stupid. I didnt feel any pressure this time and i think thats partly because i know it is the best option for me now, where as previously i didnt think it was the right time at all.
Showing posts with label weight. Show all posts
Showing posts with label weight. Show all posts
Tuesday, 5 July 2011
Tuesday, 29 March 2011
Future...
I was going to blog yesterday as i was in a really crap place for most of the day, but i just didn't know what to write really.
I felt awful and so that in turn affects the emotions and everything. I saw pretty much everything in a negative way yesterday. I managed to actually shower and wash my hair, though it took me forever. Then when it came to trying to comb my hair and dry it i just was so out of breath it made me so angry i had a threw my comb across my desk, and had a few mins of angry tears. Honestly i felt a bit better after that cry, although totally out of breath lol...
After that things started to get a little bit better, i did a mucoclear and cleared a great deal, which made it a bit easier to breath and move and it also settled my super racing heart a bit as well, which was a relief as that just get so uncomfy after about 5mins!
I managed to sort my hair out finally as well. I didn't manage to have lunch yesterday and so my planned sausage sandwich went out the window as i just couldn't manage going downstairs, so i didn't have a massively good day yesterday.
But today is, i was going to say a little better, but its actually a lot better really. Ive had breakfast, and felt better for breathing today, I'm still really full in my lungs and I'm clearing a lot just from a simple cough, which at the moment I'm seeing as good rather than "oh no another infection" as its better out than in!
Ive actually managed to have lunch today! Its just a simple sandwich, and it took me a while to make it as i struggle to stand for a while, and i couldn't cut the cheese properly but i got there and felt proud for making myself a sandwich! Which seems really stupid in writing but i did it, and so that's what matters to me :)
Ive taken all my pills so far for today which doesnt always happen, and im about to do a neb after ive done this blog.
Today i was supposed to be having my PEG procedure, but its cancelled. Mostly i cancelled it, as i was meant to go into hospital for a few days IVs before the procedure, but they had a massive bed shuffle round due to nora virus breakout and so my bed got cancelled. They neglected to ring and tell me this until i was literally half way there on the train with all my stuff!
So we turnt around and went home after an impromtu visit to my great aunts for a cup of tea and some cake :p when we got home mum rang the team who said they knew nothing about it, considering it was my dietician who rang and told me to go home i was annoyed at this lack of them being told!
So we tried admissions to see what would happen now, as my PEG was all booked in for today, they said at first they would try and get me in for Monday, then they said they will send a new date out for me, then they said they will try and get me in for the end of the week!! Nobody knew a thing of what was happening, so i told them to cancel the whole thing and not bother.
Mum rang the team on Monday and spoke to them and the dietician (the one i like as well which made it easier!) rang me back and i explained to her that unless it could be done on the 29th i cant do it until June time then. I said that im going away to see my sister on the 15th April and then when i come back ill be studying for my exams which start at the beginning of May, and these are my final year exams so need my absolute full attention! She thankfully understood this and said that if the PEG procedure cant fit into my lifestyle until June then that is fine as it wasnt an emergency (which made me laugh as thats not the impression the other horrible dietician made it to be, which explains why i felt so much pressure 'coz she was blowing everything out of proportion!).
So im just maintaining my weight now and if i can gaining some which will be great! I would love it, if come June time ive gained enough weight on my own that i dont even need the PEG anymore! Me and mum are making a lot of changes to my diet, so if anyone has any top tips that would be great :)
Its a hell of a lot of pressure off my shoulders and i slept better last night knowing that its postponed for now and i dont need to think about it for now! It was really messing up my mind.
Anyway im looking forward to two things now for April, one is some time away with mum seeing my sister and her hubby, and the other is my first night out with my old college lads i studied with towards the end of April! Im so looking forward to it, as ive not been out for absolutely ages!! But im determinded to be healthy enough to go out! Even if i dont stay out till 3am and get totally drunk, i dont care ill be out and having fun and actually socialising with real people!!
Can you tell im excited? :D
I felt awful and so that in turn affects the emotions and everything. I saw pretty much everything in a negative way yesterday. I managed to actually shower and wash my hair, though it took me forever. Then when it came to trying to comb my hair and dry it i just was so out of breath it made me so angry i had a threw my comb across my desk, and had a few mins of angry tears. Honestly i felt a bit better after that cry, although totally out of breath lol...
After that things started to get a little bit better, i did a mucoclear and cleared a great deal, which made it a bit easier to breath and move and it also settled my super racing heart a bit as well, which was a relief as that just get so uncomfy after about 5mins!
I managed to sort my hair out finally as well. I didn't manage to have lunch yesterday and so my planned sausage sandwich went out the window as i just couldn't manage going downstairs, so i didn't have a massively good day yesterday.
But today is, i was going to say a little better, but its actually a lot better really. Ive had breakfast, and felt better for breathing today, I'm still really full in my lungs and I'm clearing a lot just from a simple cough, which at the moment I'm seeing as good rather than "oh no another infection" as its better out than in!
Ive actually managed to have lunch today! Its just a simple sandwich, and it took me a while to make it as i struggle to stand for a while, and i couldn't cut the cheese properly but i got there and felt proud for making myself a sandwich! Which seems really stupid in writing but i did it, and so that's what matters to me :)
Ive taken all my pills so far for today which doesnt always happen, and im about to do a neb after ive done this blog.
Today i was supposed to be having my PEG procedure, but its cancelled. Mostly i cancelled it, as i was meant to go into hospital for a few days IVs before the procedure, but they had a massive bed shuffle round due to nora virus breakout and so my bed got cancelled. They neglected to ring and tell me this until i was literally half way there on the train with all my stuff!
So we turnt around and went home after an impromtu visit to my great aunts for a cup of tea and some cake :p when we got home mum rang the team who said they knew nothing about it, considering it was my dietician who rang and told me to go home i was annoyed at this lack of them being told!
So we tried admissions to see what would happen now, as my PEG was all booked in for today, they said at first they would try and get me in for Monday, then they said they will send a new date out for me, then they said they will try and get me in for the end of the week!! Nobody knew a thing of what was happening, so i told them to cancel the whole thing and not bother.
Mum rang the team on Monday and spoke to them and the dietician (the one i like as well which made it easier!) rang me back and i explained to her that unless it could be done on the 29th i cant do it until June time then. I said that im going away to see my sister on the 15th April and then when i come back ill be studying for my exams which start at the beginning of May, and these are my final year exams so need my absolute full attention! She thankfully understood this and said that if the PEG procedure cant fit into my lifestyle until June then that is fine as it wasnt an emergency (which made me laugh as thats not the impression the other horrible dietician made it to be, which explains why i felt so much pressure 'coz she was blowing everything out of proportion!).
So im just maintaining my weight now and if i can gaining some which will be great! I would love it, if come June time ive gained enough weight on my own that i dont even need the PEG anymore! Me and mum are making a lot of changes to my diet, so if anyone has any top tips that would be great :)
Its a hell of a lot of pressure off my shoulders and i slept better last night knowing that its postponed for now and i dont need to think about it for now! It was really messing up my mind.
Anyway im looking forward to two things now for April, one is some time away with mum seeing my sister and her hubby, and the other is my first night out with my old college lads i studied with towards the end of April! Im so looking forward to it, as ive not been out for absolutely ages!! But im determinded to be healthy enough to go out! Even if i dont stay out till 3am and get totally drunk, i dont care ill be out and having fun and actually socialising with real people!!
Can you tell im excited? :D
Tuesday, 22 March 2011
PEG
As some people know i am getting my PEG put in on the 29th and i am bricking it about the procedure!
I was also before bricking it a lot about the afterwards part of the PEG and i was worried that it just wouldnt work for me and would have been a waste of my time.
But ive just seen the perfect video on youtube about a girl who had a PEG put in, it wasnt about the procedure bits, it was about the "afterwards" parts, like the weight gain, the being even more body conscious, things like that. But watching that video has settled me a lot now about it all. I deffinetly feel like im doing the right thing for myself by getting this PEG done. I keep sitting here, when im meant to be doing coursework, and thinking about all the benefits i will feel and even see hopefully a few months after the PEG has been in use with me. I will be a bit weightier, i should have more energy, i should have a bit more colour in myself, i should fit my clothes better! Hell i might even need to go shopping eventually for new clothes if things work really well!!
So i do still feel like i was really pressured and forced into having the PEG done, by CF and by my dietician putting the pressure on me constantly about gaining weight and my drops in lung functions from not having the energy to fight infections etc. So im still pissed with her about it, but i dont think there will ever be a time when a CFer isnt pissed off with their dietician from things ive heard/read!
But i dont think that i will be making the wrong decision. I mean when she first mentioned it all months ago i declined outright, i wouldnt even hear of how well it worked for other patients or anything about it. Point blankely refused to listen to her about it. But when i was like that i still felt a part of me wanted to know how it all worked and that it could be my answer and bit of help for taking this great pressure of "you must eat more" off my shoulders. But i didnt want to show weakness and give in and ask about it. It was stupid!
With me, approching subjects such as the PEG and the Port and what i consider for me in my life to me to be a pretty huge deal, have to be done delicately, otherwise i just shut down and wont listen to you. Its my stubborn streak coming out in complete force, ray guns included! I feel like they are telling me that i cant manage on my own, that im failing on my own and that i need the help. And even tho part of me is yelling inside saying "yes, help me! please im struggling so much here i cant stand it!" i ignore that and stamp my feet saying i can do it on my own, i can take care of myself and im not failing and dont need the help. Its part of the reason its taken me so long to make the decision to have this PEG done, where as with the Port it was me who approached the Dr about it. Albeit just asking for information about it as i didnt know what it was, and he ended up saying its a route we needed to start thinking about. But it was an easier decision to make for me as it was me who brought it all up, it was me who opened that door and started walking down that road. It wasnt me who brought up the PEG.
So now ive gotten a lot better about the "afterwards" parts of having the PEG, i just need to figure out how to feel better about the procedure. I dont like how they do it. Ive not had a local before or sedation. They said i wont remember it as the sedation is from the same family as the date drug Rohypnol(sp?). But im worried that the local wont work and i wont be able to communicate that im in pain. Something like that is really worrying me, i dont know what the chances are exactly of that happening really, i asked the nutrition nurses about it and it was like she just thought it was the worlds stupidest question to ask! All she said was that it will work and they will check. Yeah like that totally settles me. Not. The psychologist is meant to be coming to see me the day before i have it done as she knows how scared i am, so hopefully she can give me some techniques to calm myself down or something.
I was also before bricking it a lot about the afterwards part of the PEG and i was worried that it just wouldnt work for me and would have been a waste of my time.
But ive just seen the perfect video on youtube about a girl who had a PEG put in, it wasnt about the procedure bits, it was about the "afterwards" parts, like the weight gain, the being even more body conscious, things like that. But watching that video has settled me a lot now about it all. I deffinetly feel like im doing the right thing for myself by getting this PEG done. I keep sitting here, when im meant to be doing coursework, and thinking about all the benefits i will feel and even see hopefully a few months after the PEG has been in use with me. I will be a bit weightier, i should have more energy, i should have a bit more colour in myself, i should fit my clothes better! Hell i might even need to go shopping eventually for new clothes if things work really well!!
So i do still feel like i was really pressured and forced into having the PEG done, by CF and by my dietician putting the pressure on me constantly about gaining weight and my drops in lung functions from not having the energy to fight infections etc. So im still pissed with her about it, but i dont think there will ever be a time when a CFer isnt pissed off with their dietician from things ive heard/read!
But i dont think that i will be making the wrong decision. I mean when she first mentioned it all months ago i declined outright, i wouldnt even hear of how well it worked for other patients or anything about it. Point blankely refused to listen to her about it. But when i was like that i still felt a part of me wanted to know how it all worked and that it could be my answer and bit of help for taking this great pressure of "you must eat more" off my shoulders. But i didnt want to show weakness and give in and ask about it. It was stupid!
With me, approching subjects such as the PEG and the Port and what i consider for me in my life to me to be a pretty huge deal, have to be done delicately, otherwise i just shut down and wont listen to you. Its my stubborn streak coming out in complete force, ray guns included! I feel like they are telling me that i cant manage on my own, that im failing on my own and that i need the help. And even tho part of me is yelling inside saying "yes, help me! please im struggling so much here i cant stand it!" i ignore that and stamp my feet saying i can do it on my own, i can take care of myself and im not failing and dont need the help. Its part of the reason its taken me so long to make the decision to have this PEG done, where as with the Port it was me who approached the Dr about it. Albeit just asking for information about it as i didnt know what it was, and he ended up saying its a route we needed to start thinking about. But it was an easier decision to make for me as it was me who brought it all up, it was me who opened that door and started walking down that road. It wasnt me who brought up the PEG.
So now ive gotten a lot better about the "afterwards" parts of having the PEG, i just need to figure out how to feel better about the procedure. I dont like how they do it. Ive not had a local before or sedation. They said i wont remember it as the sedation is from the same family as the date drug Rohypnol(sp?). But im worried that the local wont work and i wont be able to communicate that im in pain. Something like that is really worrying me, i dont know what the chances are exactly of that happening really, i asked the nutrition nurses about it and it was like she just thought it was the worlds stupidest question to ask! All she said was that it will work and they will check. Yeah like that totally settles me. Not. The psychologist is meant to be coming to see me the day before i have it done as she knows how scared i am, so hopefully she can give me some techniques to calm myself down or something.
Tuesday, 18 January 2011
Weight
I had an appointment recently and things are good and bad really. For once my efforts have been paying off and I've gone from 38% lung function up to 45%. Which still isn't the best, but its heading in the direction i need it to go, so ill take it for now and just work a bit harder to get it further increased.
Weight is a huge problem for me right now. Its getting me quite low and really frustrated. I cant seem to gain any weight on my own. I'm about 46kg right now and the dietician keeps going on about how I'm so underweight. Doesn't she think i know that!! I'm not that keen on my dietician especially after that remark she made once about being able to teach anatomy with my arms 'coz they are so skinny.
Ive been given 6 weeks until my next appointment and if I've not gained weight enough for them to be remotely happy then I'm in serious discussions about getting a PEG. This i really obviously do not want!!
Its just extremely frustrating beyond words, that I'm eating and eating and its just not sticking to me at all. I'm even making myself drink my Ensure+ shakes again and I'm trying to use Maxijul powder again in my drinks and things like cup a soups i have at lunch time. I had to give a full rendition of what id eaten for the past week to the dietician which pisses me off when i have to do that, as even if I've sat and eaten like 6 full on family sized cakes all to myself everyday she still isn't happy with me! I give up with her. I don't listen to her really, just glaze over and think about where id rather be. Its not as if she gives me any advice to listen to anyway!
I had the PEG feed talk every time I've been there for the past like month now, and its really pissing me off that they wont take "no" for an answer. I said i don't want NG feeding coz i just cant handle the thought of it let alone actually having it happen. So they've now moved onto PEG feeding. Which is worse, so god knows where their thinking is that I'm going to say "yes" to this when i already said "no" to NG feeding.
I realise it would help me out greatly and if my weight went up then it would help me out a lot with other things as well. But i just don't think PEG feeding is the way for me to be going yet. Its like an instinct that's telling me i don't need that yet and to stick to my guns about doing this myself. Imagine how pleased ill feel if i can get back to 54kg on my own without interference from another horrid foreign body in me. I understand that some people are just not in a position to say no to such help, and i might well be one of them people one day, i just don't know. But while I've got the chance to do this on my own, and feel my own work and efforts paying off myself then I'm going to take it.
The Dr, as nice and lovely as she is, explained in a better way why they want me to do tube feeding. She said that if I'm ever in the unfortunate position to need a lung transplant, then there is the strict rules to follow for weight amongst other things. Which i fully understand and do comprehend to an extent (without being in such a position i can only understand it to an extent i think) but it almost felt like she was slightly using that what she said as a scare to get me to do tube feeding.
Even if at my next appointment I've gained weight, I'm still going to look into PEG feeding while I've got the chance to ask all i can think of to ask, then if the time comes that i really really do need it, then I've got a lot of info and its not all going to be new to me like now. Perhaps it will terrify me less as well.
Weight is a huge problem for me right now. Its getting me quite low and really frustrated. I cant seem to gain any weight on my own. I'm about 46kg right now and the dietician keeps going on about how I'm so underweight. Doesn't she think i know that!! I'm not that keen on my dietician especially after that remark she made once about being able to teach anatomy with my arms 'coz they are so skinny.
Ive been given 6 weeks until my next appointment and if I've not gained weight enough for them to be remotely happy then I'm in serious discussions about getting a PEG. This i really obviously do not want!!
Its just extremely frustrating beyond words, that I'm eating and eating and its just not sticking to me at all. I'm even making myself drink my Ensure+ shakes again and I'm trying to use Maxijul powder again in my drinks and things like cup a soups i have at lunch time. I had to give a full rendition of what id eaten for the past week to the dietician which pisses me off when i have to do that, as even if I've sat and eaten like 6 full on family sized cakes all to myself everyday she still isn't happy with me! I give up with her. I don't listen to her really, just glaze over and think about where id rather be. Its not as if she gives me any advice to listen to anyway!
I had the PEG feed talk every time I've been there for the past like month now, and its really pissing me off that they wont take "no" for an answer. I said i don't want NG feeding coz i just cant handle the thought of it let alone actually having it happen. So they've now moved onto PEG feeding. Which is worse, so god knows where their thinking is that I'm going to say "yes" to this when i already said "no" to NG feeding.
I realise it would help me out greatly and if my weight went up then it would help me out a lot with other things as well. But i just don't think PEG feeding is the way for me to be going yet. Its like an instinct that's telling me i don't need that yet and to stick to my guns about doing this myself. Imagine how pleased ill feel if i can get back to 54kg on my own without interference from another horrid foreign body in me. I understand that some people are just not in a position to say no to such help, and i might well be one of them people one day, i just don't know. But while I've got the chance to do this on my own, and feel my own work and efforts paying off myself then I'm going to take it.
The Dr, as nice and lovely as she is, explained in a better way why they want me to do tube feeding. She said that if I'm ever in the unfortunate position to need a lung transplant, then there is the strict rules to follow for weight amongst other things. Which i fully understand and do comprehend to an extent (without being in such a position i can only understand it to an extent i think) but it almost felt like she was slightly using that what she said as a scare to get me to do tube feeding.
Even if at my next appointment I've gained weight, I'm still going to look into PEG feeding while I've got the chance to ask all i can think of to ask, then if the time comes that i really really do need it, then I've got a lot of info and its not all going to be new to me like now. Perhaps it will terrify me less as well.
Friday, 3 September 2010
Update...
I'm, not really sure what this blog is about today, but i feel like i wanted to make an update...
I (hopefully) start back at Uni soon... It all depends on my resit results, which I'm supposed to get around the 17th September! If you don't pass all your resits then you have to attend some silly registration session at the uni to fill out paper work and the letter i got says to arrange to pay your fees.... I'm a bit worried that means they are implying the student loans company wont pay it if you don't pass resits, i need to look into that. If so that puts me in a situation as I've not got £3grand+ !
Well see, I'm sure the loans company would still pay it. I think if i had a sponsorship it would be a different situation.
Mums back at work now :( so its back to being on my own most of the day. I'm a bit concerned I'm going to slip back into that slump i was in 'coz i was so lonely and bored at the beginning of the summer hols, but I'm trying to make sure I've got something to do. I'm working through some more of my PHP text book today.
My next appointment at the hospital isn't until October now :D Ive gone from have an appointment every 2 weeks for ages to not needing one for 2 months!! My last appointment was one of the best I've had probably all year! Its been really crap health wise for me this year, and so to have such a good appointment was the best thing in the world! I actually left the hospital smiling for once instead of ringing mum up in a rage and being all moody.
My lung function had been doing really crap and i was down to the 40's region. 42% was what it had been in an appointment i had on the 6th August and i was booked in again for 2 weeks after that. I really put a lot of effort into getting it up there in those 2 weeks. I was doing physio and nebs twice a day, i was really trying to eat better (which was still very hard and i was on the anti sickness tabs) i was doing everything i could think of doing within the limits of what i felt i could do without collapsing. It worked that well that i ended up gaining 13% in my lung function on the 20th August :D Putting me now at 55% ! I realise this still isn't the most amazing number to have for lung function, but for months of effort not paying off, and being in the 40's region for so long, i pretty much cried when i saw that increase!! Considering i didn't think lung function test had gone that well!!
My weight was down, but as i tried to explain to the mean dietician about the sickness feeling when eating, and how hard it was to even eat a yogurt some days. But she doesn't get it. I hate her even more now, as i was sat in the room i was placed and as it was a bit hot in there i took my hoodie off just before she came in. Now i know my arms aren't exactly the fatest in the world but there was no need for what she said to me. She looked at my arms, and chuckled and said looking right at me, that you could use my arms as an anatomy lesson they are that skinny. I was fuming so much i actually wanted to choke her! It still makes me angry about it now thinking about it. I am really conscious of my arms, and when i was younger would wear baggy jumpers to hide the skinniness of them, it took me years to get the courage to sit outside wearing my vest top and actually showing my arms and collar bones (they really stick out and i hate it). So I'm trying to not let her ridiculously unfair and nasty comment affect me too much, and I've not told the team. i don't know if i will, as it doesn't look like shes eaten anything more than a sugar cube in the last year anyway so i don't see how she has the audacity to sit there and tell me to put cream on my porridge and eat more "filling foods", when she could nearly turn to the side and people might report her missing!!
Argh! I'm thinking of requesting to see another dietician but the other one doesn't seem to be around a great deal, which is a real shame as shes so lovely!
Rant over.
Otherwise i don't think theres much else to report on. Still waiting on the gym to be sorted, last i was told the payment was being sorted out, but that was weeks ago now, and i really want to get to the gym and put more effort in rather than puffing on a neb at my desk while playing solitaire all the time :p So I'm going to ring the physios and see whats happening.
Quick question for the CFers who read this before i go:
How do you sort out your chest when it feels really dry when coughing?
I'm drinking lots of fluids and eating much better as well, but every time i cough i can feel stuff on my chest, but cant shift it properly even with a neb as my chest and throat feels so dry when i cough...
Thanks in advance for any answers :)
I (hopefully) start back at Uni soon... It all depends on my resit results, which I'm supposed to get around the 17th September! If you don't pass all your resits then you have to attend some silly registration session at the uni to fill out paper work and the letter i got says to arrange to pay your fees.... I'm a bit worried that means they are implying the student loans company wont pay it if you don't pass resits, i need to look into that. If so that puts me in a situation as I've not got £3grand+ !
Well see, I'm sure the loans company would still pay it. I think if i had a sponsorship it would be a different situation.
Mums back at work now :( so its back to being on my own most of the day. I'm a bit concerned I'm going to slip back into that slump i was in 'coz i was so lonely and bored at the beginning of the summer hols, but I'm trying to make sure I've got something to do. I'm working through some more of my PHP text book today.
My next appointment at the hospital isn't until October now :D Ive gone from have an appointment every 2 weeks for ages to not needing one for 2 months!! My last appointment was one of the best I've had probably all year! Its been really crap health wise for me this year, and so to have such a good appointment was the best thing in the world! I actually left the hospital smiling for once instead of ringing mum up in a rage and being all moody.
My lung function had been doing really crap and i was down to the 40's region. 42% was what it had been in an appointment i had on the 6th August and i was booked in again for 2 weeks after that. I really put a lot of effort into getting it up there in those 2 weeks. I was doing physio and nebs twice a day, i was really trying to eat better (which was still very hard and i was on the anti sickness tabs) i was doing everything i could think of doing within the limits of what i felt i could do without collapsing. It worked that well that i ended up gaining 13% in my lung function on the 20th August :D Putting me now at 55% ! I realise this still isn't the most amazing number to have for lung function, but for months of effort not paying off, and being in the 40's region for so long, i pretty much cried when i saw that increase!! Considering i didn't think lung function test had gone that well!!
My weight was down, but as i tried to explain to the mean dietician about the sickness feeling when eating, and how hard it was to even eat a yogurt some days. But she doesn't get it. I hate her even more now, as i was sat in the room i was placed and as it was a bit hot in there i took my hoodie off just before she came in. Now i know my arms aren't exactly the fatest in the world but there was no need for what she said to me. She looked at my arms, and chuckled and said looking right at me, that you could use my arms as an anatomy lesson they are that skinny. I was fuming so much i actually wanted to choke her! It still makes me angry about it now thinking about it. I am really conscious of my arms, and when i was younger would wear baggy jumpers to hide the skinniness of them, it took me years to get the courage to sit outside wearing my vest top and actually showing my arms and collar bones (they really stick out and i hate it). So I'm trying to not let her ridiculously unfair and nasty comment affect me too much, and I've not told the team. i don't know if i will, as it doesn't look like shes eaten anything more than a sugar cube in the last year anyway so i don't see how she has the audacity to sit there and tell me to put cream on my porridge and eat more "filling foods", when she could nearly turn to the side and people might report her missing!!
Argh! I'm thinking of requesting to see another dietician but the other one doesn't seem to be around a great deal, which is a real shame as shes so lovely!
Rant over.
Otherwise i don't think theres much else to report on. Still waiting on the gym to be sorted, last i was told the payment was being sorted out, but that was weeks ago now, and i really want to get to the gym and put more effort in rather than puffing on a neb at my desk while playing solitaire all the time :p So I'm going to ring the physios and see whats happening.
Quick question for the CFers who read this before i go:
How do you sort out your chest when it feels really dry when coughing?
I'm drinking lots of fluids and eating much better as well, but every time i cough i can feel stuff on my chest, but cant shift it properly even with a neb as my chest and throat feels so dry when i cough...
Thanks in advance for any answers :)
Friday, 23 July 2010
Hospital and IVs
So I got my IVs two weeks ago today, and i felt so so much better after just 48hrs!! My energy came back, my appetite picked up, my cough started to die down a little, everything just started getting better! It was like a weight was being slowly lifted off my shoulders, and that's the first time I've ever felt IVs do that... Finally I feel them doing what the team always tell me they are meant to be doing! :D
Ive never been more excited to be able to have a proper shower ha ha! Ive been washing my hair over the bath and its not been a struggle, i was naughty and couldn't stand it any longer and had a shower yesterday 'coz i was itching so much it was driving me insane! But i washed my hair under the shower rather than over the bath and it wasn't a struggle as much as it has been in the past :D I still got out of breath but not as bad, which made me happy.
When i had my mid way appointment my numbers weren't really changed much. My weight was still 49.4KG and my LF was still 47%, but i explained to the nurse that when i went home on the IVs, the Saturday and the Sunday morning i threw up from coughing so much (i was definitely sure it wasn't a reaction) and so it made me very wary to do my Neb's properly if at all, which didn't help with the whole clearance of my chest. They accepted it and understood (thankfully) and wrote it on my notes. Thankfully those were the only days i was sick as after that my coughing started to get easier in the morning and more controllable for me to catch my breath.
I can now sleep at night without waking up coughing all the time, which is bliss :D my energy and appetite is still picking up, for the first time since i moved back home my snacks are diminishing ha ha! Me and mum are doing the food shopping tomorrow so ill get some more things.
I was quite disappointed today when i went for my "end of 2 weeks IVs" appointment. It started off fine, i had a session with the physio to start with and had a go on the NIV machine, (its meant to replicate the BIRD machine, if any ones tried that?). It was okay, I'm not sure of it at the moment, but the machine I used was being a bit temperamental and so the physio is going to look at my next clinic appointment and I'm going to have another go but with a better machine, and then if i get along with it, then shes going to look into getting me one for home. Which will be good, as it did work to an extent as i shifted and loosened a lot on my chest.
After that i had my clinic appointment. Which also started off well, i was in a really good mood. Got weighed, which has gone up to 50.4 from the 49.4KG it was, so that improved my mood even more :D My blood pressure and pulse was down to a more normal rate, which is another improvement as its usually racing way too much. Then came Lung Function. The dooming part of any clinic for me...
It was a little tough as i kept coughing halfway through a breath out :| But i did it all and then got the results and found out its so say dropped from 47% to 44% ! I honestly don't think the results is correct. The physio had listened to my chest and said it was really clear, and usually when my weight goes up, so does the lung function for me.
I think its because i had done all that physio before hand, even though id had a break between sessions, everything was all mixed up on my chest and so of course when i blew out quickly it made me cough and interrupted my breath out. I said to the nurse that it doesn't reflect how i feel at all. Not one single bit, and she spoke with the registrar, and i was given two options, to ideally carry on IVs for another week, or to come off them today and then come back in two weeks. I chose that one. So I'm back on the 6th August to reassess.
So between now and then I've got a lot of work to do, to prove that machine and my lungs wrong :p
But with my new found energy, it'll be easier to do this than before. Plus with no IVs happening i can go swimming :D
Ive never been more excited to be able to have a proper shower ha ha! Ive been washing my hair over the bath and its not been a struggle, i was naughty and couldn't stand it any longer and had a shower yesterday 'coz i was itching so much it was driving me insane! But i washed my hair under the shower rather than over the bath and it wasn't a struggle as much as it has been in the past :D I still got out of breath but not as bad, which made me happy.
When i had my mid way appointment my numbers weren't really changed much. My weight was still 49.4KG and my LF was still 47%, but i explained to the nurse that when i went home on the IVs, the Saturday and the Sunday morning i threw up from coughing so much (i was definitely sure it wasn't a reaction) and so it made me very wary to do my Neb's properly if at all, which didn't help with the whole clearance of my chest. They accepted it and understood (thankfully) and wrote it on my notes. Thankfully those were the only days i was sick as after that my coughing started to get easier in the morning and more controllable for me to catch my breath.
I can now sleep at night without waking up coughing all the time, which is bliss :D my energy and appetite is still picking up, for the first time since i moved back home my snacks are diminishing ha ha! Me and mum are doing the food shopping tomorrow so ill get some more things.
I was quite disappointed today when i went for my "end of 2 weeks IVs" appointment. It started off fine, i had a session with the physio to start with and had a go on the NIV machine, (its meant to replicate the BIRD machine, if any ones tried that?). It was okay, I'm not sure of it at the moment, but the machine I used was being a bit temperamental and so the physio is going to look at my next clinic appointment and I'm going to have another go but with a better machine, and then if i get along with it, then shes going to look into getting me one for home. Which will be good, as it did work to an extent as i shifted and loosened a lot on my chest.
After that i had my clinic appointment. Which also started off well, i was in a really good mood. Got weighed, which has gone up to 50.4 from the 49.4KG it was, so that improved my mood even more :D My blood pressure and pulse was down to a more normal rate, which is another improvement as its usually racing way too much. Then came Lung Function. The dooming part of any clinic for me...
It was a little tough as i kept coughing halfway through a breath out :| But i did it all and then got the results and found out its so say dropped from 47% to 44% ! I honestly don't think the results is correct. The physio had listened to my chest and said it was really clear, and usually when my weight goes up, so does the lung function for me.
I think its because i had done all that physio before hand, even though id had a break between sessions, everything was all mixed up on my chest and so of course when i blew out quickly it made me cough and interrupted my breath out. I said to the nurse that it doesn't reflect how i feel at all. Not one single bit, and she spoke with the registrar, and i was given two options, to ideally carry on IVs for another week, or to come off them today and then come back in two weeks. I chose that one. So I'm back on the 6th August to reassess.
So between now and then I've got a lot of work to do, to prove that machine and my lungs wrong :p
But with my new found energy, it'll be easier to do this than before. Plus with no IVs happening i can go swimming :D
Wednesday, 7 July 2010
BORED!!
Dont get me wrong im glad to be home and everything like that, but im SOOOOO bored its ridiculous. Im that bored its making me low and fed up. I havnt the energy to do anything, including getting out of bed at a time where i feel like im not being lazy. I set myself some plans to do the night before and i wake up and i think, oh, another boring day. And ive just got no oumph to do anything.
I wish so much that i knew people around here. I used to when i was in College, but now i dont. All my friends from uni live too far away and are preparing for placement year as well. I havnt got a license or a car so its not like i can just hop in my car and drive somewhere just for something to do :(
Im that fed up i cant be bothered to do my nebs etc. Which yeah i know its REALLY uber bad. But still, its not as easy as some people seem to think it is to get the effort to do what seems a simple nebuliser. When you feel stuck for breath just sitting on the sofa, a nebuliser where im huffing and puffing which leads to coughing and then if i cant catch my breath properly throwing up (which im getting thouraghly pissed off with) is the last thing on your mind to do.
I want to go out for walks, i want to do my drawings, i want to do some of my glass painting and so many other things, but im just so fed up i cant be bothered.
Ive got hospital on Friday which isnt what the highlight of my week will be. I will not be refusing IVs this time around. But its typical i actually want them this time and so they wont be offered or "in my best interest". But im insisting on home IVs. Theres no way im going back into hospital to eat the sludge they call food, and such tiny portions for a CF patients, and then still be expected to have gained like 5 kilos in 2 days!! Ridiculous.
Im trying really hard to eat plenty. Im trying to eat little and often... Note i say trying. But its proving so difficult for some reason. I hate it!! I feel hungry and i know i want food, but then i look at what ive got in the cupboard or the fridge or something and im just like theres nothing there that i want to eat. Nothing at all. Food used to be really exciting for me, but now, i dont see what was so exciting about it. I want the food to be exciting again!! And then i get moody and i snap at the people who dont deserve to be snapped at :( I know my weights dropped and i know my Lung Function has gone down even more, but people are asking for a flipping miracle for me to be able to do everything im "meant to do" and more with zero energy all the bloody time.
Im noticing as well that my shoulders are curving around a lot more. Its disgusting, i despise my shoulders! I try and straighten my back and shoulders and then it feels really hard to breathe and so i just shrink and slouch again. Im hoping when i can, to go to town and get one of them big gym ball things, as the physio told me that some stretches on that will help my posture and i can also use it for "fun physio" if theres such a thing...
I know im worrying people, and so that pisses me off with myself even more, and then i get more angry coz i feel like im trapped inside my body that feels so weak and rubbish, and theres nothing i can do about it. Its scary.
Still well see what the hospital says. If i get IVs hopefully they will start kicking me up the butt with some energy!!
I wish so much that i knew people around here. I used to when i was in College, but now i dont. All my friends from uni live too far away and are preparing for placement year as well. I havnt got a license or a car so its not like i can just hop in my car and drive somewhere just for something to do :(
Im that fed up i cant be bothered to do my nebs etc. Which yeah i know its REALLY uber bad. But still, its not as easy as some people seem to think it is to get the effort to do what seems a simple nebuliser. When you feel stuck for breath just sitting on the sofa, a nebuliser where im huffing and puffing which leads to coughing and then if i cant catch my breath properly throwing up (which im getting thouraghly pissed off with) is the last thing on your mind to do.
I want to go out for walks, i want to do my drawings, i want to do some of my glass painting and so many other things, but im just so fed up i cant be bothered.
Ive got hospital on Friday which isnt what the highlight of my week will be. I will not be refusing IVs this time around. But its typical i actually want them this time and so they wont be offered or "in my best interest". But im insisting on home IVs. Theres no way im going back into hospital to eat the sludge they call food, and such tiny portions for a CF patients, and then still be expected to have gained like 5 kilos in 2 days!! Ridiculous.
Im trying really hard to eat plenty. Im trying to eat little and often... Note i say trying. But its proving so difficult for some reason. I hate it!! I feel hungry and i know i want food, but then i look at what ive got in the cupboard or the fridge or something and im just like theres nothing there that i want to eat. Nothing at all. Food used to be really exciting for me, but now, i dont see what was so exciting about it. I want the food to be exciting again!! And then i get moody and i snap at the people who dont deserve to be snapped at :( I know my weights dropped and i know my Lung Function has gone down even more, but people are asking for a flipping miracle for me to be able to do everything im "meant to do" and more with zero energy all the bloody time.
Im noticing as well that my shoulders are curving around a lot more. Its disgusting, i despise my shoulders! I try and straighten my back and shoulders and then it feels really hard to breathe and so i just shrink and slouch again. Im hoping when i can, to go to town and get one of them big gym ball things, as the physio told me that some stretches on that will help my posture and i can also use it for "fun physio" if theres such a thing...
I know im worrying people, and so that pisses me off with myself even more, and then i get more angry coz i feel like im trapped inside my body that feels so weak and rubbish, and theres nothing i can do about it. Its scary.
Still well see what the hospital says. If i get IVs hopefully they will start kicking me up the butt with some energy!!
Friday, 14 May 2010
A little unsure...
So ive started talking to this new guy. I like him so far, i think he likes me but a little hard to tell really. Anyway i told him the other week about my CF as it came up in convo about my recent tatt. (Ill add a pic on the end) and so he knows about the whole hard to gain weight part of it. Well we were talking tonight and he said in convo that i do look too skinny in my MSN pic.... oh. i just tried to brush it off with a well its hard to find the balance crap. But he didnt really say much. I dont know what his understanding is of CF and i dont really want to sit there and question him on what he knows as if he doesnt want to know then im not going to force him.
But just that what he said "well you do look too skinny in your pic" has stuck with me now and i hate it. When i was younger i hated my skinnyness, and in seniors i was called anorexic (amoungst other bullying things) a few times, even tho it was by people who barely or didnt know me, it still hurt a lot... It took me ages to feel comfy wearing a vest top outside as my collor bones stick out and my shoulders as well look really boney. My arms in general arent exactly Arnold Schwarzenegger size really. I used to wear baggy clothing as much as possible so it wouldnt show off my stick-like-ness.
Im just really quite disappointed he said that, and it feels like he said it so bluntly as well. Forgive me if i seem like im blowing steam for nothing but him saying that, brought back years of buried pain about my looks and skinnyness (as vein as that sounds, its not meant like that). Considering the amount ive been eating lately ive put some weight on (i hope), but it usually just goes straight to my stomach, and feels like all that weight has disappeared by the morning!
I said to myself when i was nearing end of seniors that if someone cant accept me for who i am, then they can just keep walking on past me and my life. But at the same time i dont want this guy to do that... i want to help him understand if he wants to and explain its pretty normal for me and im never going to be muscly. not even a little bit. but then on the other hand i keep thinking about that saying i told myself years ago...
Its stupid. I hate when people i like in that way says things about my weight or something as its the thing im the most self-conscience about. Ive just learnt to hide it better over the years. But still him saying that made me feel so small, weak and self-conscience all over again. and im pretty angry and upset that he made me feel like that!
Heres the pic of my latest tatt. The words "hope" and "breathe" are written on the tails for myself.
But just that what he said "well you do look too skinny in your pic" has stuck with me now and i hate it. When i was younger i hated my skinnyness, and in seniors i was called anorexic (amoungst other bullying things) a few times, even tho it was by people who barely or didnt know me, it still hurt a lot... It took me ages to feel comfy wearing a vest top outside as my collor bones stick out and my shoulders as well look really boney. My arms in general arent exactly Arnold Schwarzenegger size really. I used to wear baggy clothing as much as possible so it wouldnt show off my stick-like-ness.
Im just really quite disappointed he said that, and it feels like he said it so bluntly as well. Forgive me if i seem like im blowing steam for nothing but him saying that, brought back years of buried pain about my looks and skinnyness (as vein as that sounds, its not meant like that). Considering the amount ive been eating lately ive put some weight on (i hope), but it usually just goes straight to my stomach, and feels like all that weight has disappeared by the morning!
I said to myself when i was nearing end of seniors that if someone cant accept me for who i am, then they can just keep walking on past me and my life. But at the same time i dont want this guy to do that... i want to help him understand if he wants to and explain its pretty normal for me and im never going to be muscly. not even a little bit. but then on the other hand i keep thinking about that saying i told myself years ago...
Its stupid. I hate when people i like in that way says things about my weight or something as its the thing im the most self-conscience about. Ive just learnt to hide it better over the years. But still him saying that made me feel so small, weak and self-conscience all over again. and im pretty angry and upset that he made me feel like that!
Heres the pic of my latest tatt. The words "hope" and "breathe" are written on the tails for myself.
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