I need a new hobby, something to focus on, something to keep me busy ! You see recently all I seem to be thinking about is transplant or anything that has to do with transplant or just CF in general and I can quite safely say it's driving me insane.
It's my own fault really but I have been following a few different transplant stories online like on Facebook and twitter and some people have created a blog just like I have. I love to hear the success stories that really makes me happy but some of them have not been so successful and I know I should just stop reading but I can't bring myself to stop it's like an addiction, I NEED to keep reading, I just need to know the ending whether that be good or bad !
When I went for my transplant assessment back in march I was well warned that this was a huge deal and my life would change dramatically even after transplant I could hit many hurdles, in my head I was thinking yeah okay that's fine as I can't go on living like this so how bad can "hurdles" be ? Well reading some of these stories it turns out they can be really bad. It's starting to scare me I need to learn to not read the bad but only the good I don't know why I feel the need to torture myself like this I guess I am just to nosey for my own good, not a good trait to have I am learning.
In other news I am getting home on Friday yep HOME I can't wait I have been here for 3 weeks too long this time and some time at home is much needed like I said I am about to go insane so a wee bit of normality will do me the world of good and hopefully I get to stay out for a while I am aiming for a week and then we shall see how I go, day at a time with me these days but hey ho I'm not complaining not one bit ! I think we finally have the sickness under control too it looks like it was the increased dose of my MST so that has been lowered which is also good for making me less drowsy so I am feeling a bit more human again thank god !
Friday seems so far away just now !
Wednesday 25 September 2013
Thursday 19 September 2013
Auntie of 2
I made a promise that my next blog would be more positive and more happy. So as promised this blog will be happier.
Let me start with the most amazing news that I am going to be an auntie again ! It's funny isn't it how the news of someone having a baby brings so much joy and happiness to everyone around them. The news of my sister being pregnant makes me so happy it puts the biggest smile ever on my face. I still can't believe Oliver is going to be a big brother, he will be the best big brother I know it. A baby just brings so much happiness especially when life is so hard for us at the moment. The news has brought that extra strength in me to keep fighting hard and never stop. I need to be the best auntie I can for Oliver and now this new bundle of joy.
I only have one concern though, how do you have enough love ? I mean I can't even begin to explain or put down in words how much I love Oliver so how am I too love another human being the same ? Equally ? I can only try.
Unfortunately I haven't had the best week health wise and I know I said I was going to keep this post happy which I have partly. I have really struggled mainly with sickness and breathing, it's a constant battle. However my doc upped my MST (long acting morphine) dose and finally it seems something is working that and the change in IVs. I think it's ivs making me feel so sick but I guess you can't have it all. Also the new MST dose has made me quite drowsy and the last few days seemed to have rolled into each other, hopefully I get used to it soon and get back to feeling like myself again.
I have been struggling to get to sleep at night, finally nodding off around 2am each night it's not good for me I need all the sleep I can get so I can put in extra energy into breathing. It's at night when I feel the best and think the most. I like to watch DVDs and surf the Internet. I try to go to sleep but it just doesn't happen maybe I need someone to knock me out with a hammer that might help.
I managed to get out on pass last weekend for my cousins christening I loved it to get out and see family it always makes me happy. I must admit I struggled a bit but got through then me and mum went home where I just fell asleep before my dad brought me back to the hospital. I loved being at home even just for a few hours it's just amazing I never want to leave.
We have decided to throw a Halloween party where it will be £5 a ticket to get in and all the money raised will go straight to the CF Trust. There will be raffles too and other things going on to raise money. Things like this get me all excited I just love having things too look forward to and have things planned it takes my mind off transplant even just for 5 minutes as it seems to be all I think about these days. Having this to look forward too and to help plan will keep me busy enough.
So that's really all I have to report this time it's all exciting with the new baby and fundraising stuff going on it's always a busy time in my family but that's just the way I like it !
Let me start with the most amazing news that I am going to be an auntie again ! It's funny isn't it how the news of someone having a baby brings so much joy and happiness to everyone around them. The news of my sister being pregnant makes me so happy it puts the biggest smile ever on my face. I still can't believe Oliver is going to be a big brother, he will be the best big brother I know it. A baby just brings so much happiness especially when life is so hard for us at the moment. The news has brought that extra strength in me to keep fighting hard and never stop. I need to be the best auntie I can for Oliver and now this new bundle of joy.
I only have one concern though, how do you have enough love ? I mean I can't even begin to explain or put down in words how much I love Oliver so how am I too love another human being the same ? Equally ? I can only try.
Unfortunately I haven't had the best week health wise and I know I said I was going to keep this post happy which I have partly. I have really struggled mainly with sickness and breathing, it's a constant battle. However my doc upped my MST (long acting morphine) dose and finally it seems something is working that and the change in IVs. I think it's ivs making me feel so sick but I guess you can't have it all. Also the new MST dose has made me quite drowsy and the last few days seemed to have rolled into each other, hopefully I get used to it soon and get back to feeling like myself again.
I have been struggling to get to sleep at night, finally nodding off around 2am each night it's not good for me I need all the sleep I can get so I can put in extra energy into breathing. It's at night when I feel the best and think the most. I like to watch DVDs and surf the Internet. I try to go to sleep but it just doesn't happen maybe I need someone to knock me out with a hammer that might help.
I managed to get out on pass last weekend for my cousins christening I loved it to get out and see family it always makes me happy. I must admit I struggled a bit but got through then me and mum went home where I just fell asleep before my dad brought me back to the hospital. I loved being at home even just for a few hours it's just amazing I never want to leave.
We have decided to throw a Halloween party where it will be £5 a ticket to get in and all the money raised will go straight to the CF Trust. There will be raffles too and other things going on to raise money. Things like this get me all excited I just love having things too look forward to and have things planned it takes my mind off transplant even just for 5 minutes as it seems to be all I think about these days. Having this to look forward too and to help plan will keep me busy enough.
So that's really all I have to report this time it's all exciting with the new baby and fundraising stuff going on it's always a busy time in my family but that's just the way I like it !
Monday 9 September 2013
Just breathe
It's supposed to be easy, supposed to be something we do each minute of each day without giving it a second thought, it's supposed to be natural. Breathing is supposed to be easy for all of us now having CF I am well aware that breathing can be hard sometimes but this week breathing has become like a war zone, a constant battle and I am exhausted, the front of my chest and my sides are aching as my muscles work over time while I struggle to breathe. I knew this journey to transplant was going to be hard but I wish I had known just how hard it was going to be.
The last time I wrote I was at home I was struggling a bit with a few days of temps and just not feeling 100% so after 4 days at home I'm back at gartnavel again ! What can I say I guess I just love the place. Again I'm gutted but know it's the best place for me right now. A week has nearly went by and I have really struggled through needing oramorph and lorazepam every hour just to breathe, this has made me so sleepy. Also the IVs are making me feel sick but there's plenty of good anti sickness for that. So here we are back here again but after nearly a week things are not any better even though my CRP is up and down it's not horrendous which is a good thing,
Today had been hard I guess it was all a bit to much and I lost it emotionally crying in front of my doctor nice one clo ! He has decided to start a new IV tomorrow so hopefully in the next few days I start to feel better its an infusion though so will be here for another two weeks but I need to feel better I can't go on like this. Like I said I got upset so did mum it was like let's see who can cry the most ! I know my doc felt bad but it's not his fault it's not anyone's it's life and it's just how it goes I don't blame anyone that's not fair.
I guess people just don't get it I mean what it feels like what it really feels like to fight every breath you take I'm not being dramatic here it really is hard and this week has took alot out of me but I proud to say I'm strong and one small fighter (all 4ft 11 inc) of me. I have only been waiting 5 months for transplant but I need it so badly I want it so badly it's one of those amazing gifts you think I will never get that it's to expensive or I'm not cool enough for that but if all I had to do was pay for new lungs I'm sure I would find the money somehow.
I was roaming twitter last night I noticed I had a new follower so I decided to check them out turns out she's a CF and is also on the list, so I was looking at some of her tweets as you do and this one tweet took my breath away. She had tweeted that she had been waiting for 40 months on new lungs now and would never give up hope. To me that's inspiring and so strong I hope she gets that call soon. And here I am having a meltdown after 5 months, it makes you stop and really think for just a minute there's always someone out there having an even worse time than me. I know people are only asking and trying to be nice but it really annoys me when people ask 'so have you heard anything about lung yet' I mean really ? I know they don't understand how it works and I try to remind myself they just don't get it but it does get annoying.
The settings on my NIV have been changed today allowing me to gain a bigger breath this has really helped and made for the first time in nearly a week breathing a little more easy and I have not had to have any oramorph or lorazepam all day I am totally exhausted as I have probably worked a bit harder than usual but that just means I will hopefully sleep soon.
I am missing home so much these days it's the.simple things you miss like my own bed, my tv, my room, the couch just my home in general. I miss my old life so much I feel so restricted now I hate not being able to just get up and have a shower without help or making food for myself. The past few days I have just wanted to take this mask off my face and be able to breath without it and the oxygen. I also just want to escape go somewhere nice the beach again to feel the sand between my toes and hear the sound of the waves also the wind in my hair it's my idea of heaven. Hopefully I will get on holiday after transplant one day soon until then I have a good imagination luckily.
Well my eyes are rolling now and I think I have you all up to date sorry it's quite a depressing one but writing it really helps me cope I am a really positive person I promise my next blog will be happier.
The last time I wrote I was at home I was struggling a bit with a few days of temps and just not feeling 100% so after 4 days at home I'm back at gartnavel again ! What can I say I guess I just love the place. Again I'm gutted but know it's the best place for me right now. A week has nearly went by and I have really struggled through needing oramorph and lorazepam every hour just to breathe, this has made me so sleepy. Also the IVs are making me feel sick but there's plenty of good anti sickness for that. So here we are back here again but after nearly a week things are not any better even though my CRP is up and down it's not horrendous which is a good thing,
Today had been hard I guess it was all a bit to much and I lost it emotionally crying in front of my doctor nice one clo ! He has decided to start a new IV tomorrow so hopefully in the next few days I start to feel better its an infusion though so will be here for another two weeks but I need to feel better I can't go on like this. Like I said I got upset so did mum it was like let's see who can cry the most ! I know my doc felt bad but it's not his fault it's not anyone's it's life and it's just how it goes I don't blame anyone that's not fair.
I guess people just don't get it I mean what it feels like what it really feels like to fight every breath you take I'm not being dramatic here it really is hard and this week has took alot out of me but I proud to say I'm strong and one small fighter (all 4ft 11 inc) of me. I have only been waiting 5 months for transplant but I need it so badly I want it so badly it's one of those amazing gifts you think I will never get that it's to expensive or I'm not cool enough for that but if all I had to do was pay for new lungs I'm sure I would find the money somehow.
I was roaming twitter last night I noticed I had a new follower so I decided to check them out turns out she's a CF and is also on the list, so I was looking at some of her tweets as you do and this one tweet took my breath away. She had tweeted that she had been waiting for 40 months on new lungs now and would never give up hope. To me that's inspiring and so strong I hope she gets that call soon. And here I am having a meltdown after 5 months, it makes you stop and really think for just a minute there's always someone out there having an even worse time than me. I know people are only asking and trying to be nice but it really annoys me when people ask 'so have you heard anything about lung yet' I mean really ? I know they don't understand how it works and I try to remind myself they just don't get it but it does get annoying.
The settings on my NIV have been changed today allowing me to gain a bigger breath this has really helped and made for the first time in nearly a week breathing a little more easy and I have not had to have any oramorph or lorazepam all day I am totally exhausted as I have probably worked a bit harder than usual but that just means I will hopefully sleep soon.
I am missing home so much these days it's the.simple things you miss like my own bed, my tv, my room, the couch just my home in general. I miss my old life so much I feel so restricted now I hate not being able to just get up and have a shower without help or making food for myself. The past few days I have just wanted to take this mask off my face and be able to breath without it and the oxygen. I also just want to escape go somewhere nice the beach again to feel the sand between my toes and hear the sound of the waves also the wind in my hair it's my idea of heaven. Hopefully I will get on holiday after transplant one day soon until then I have a good imagination luckily.
Well my eyes are rolling now and I think I have you all up to date sorry it's quite a depressing one but writing it really helps me cope I am a really positive person I promise my next blog will be happier.
Monday 2 September 2013
Feeling good
Nothing makes me happier than starting this blog with the great news that I am at home right now. I got home on Friday after just a weeks stay in hospital one of my shortest stays in over a year. I have changed one of the IVs which I'm am currently doing at home right now it's only twice a day and seems to be keeping my lungs stable right now.
So time to get you all up to date then, Friday was a good day my sister came to pick me up (incase you didn't already know she looks after me during the week while my mum is at work I can't thank her enough she really is a great sister and I love spending time with her it really makes me happy) she had to learn how to do the new IV drug but as usual she was a natural. So we got to leave just before lunch we couldn't get out quick enough. Once I got home I chilled for a bit then Lauren and Oliver arrived love seeing them, then everyone stayed for some dinner it was great. Me and mum stayed up quite late then decided to go to bed after some criminal minds.
Unfortunately Saturday morning was pretty rough I had a temp and was really struggling to breathe, honestly I could really have done with some new lungs then just for a relief, I work through the rough times pretty well I think but I have a few seconds sometimes where I think I can't take it I just want it to stop but I always manage through as I know it will always ease and get better. It got better and I had planned to go out to the cinema I got to go I couldn't believe I managed the cinema I have never been with the NIV machine before but it was fine. This has made me so happy and given me so much more confidence to do it again you don't appreciate the small things in life until the become obsticals put in front of you. I had such a great time and for the duration of the movie I felt normal whatever that is. I can't wait to go again soon.
Sunday I woke up feeling really good I felt good breathing wise too which I am always really grateful for as I know I could feel really breathless at any point. I saw my dad which was nice always good to him. Mostly just had a quiet day relaxing with my mum sister Andrew and Oliver again.
Today I am feeling okay had transplant on my mind alot today but I have those kind of days, quite breathless today and slept alot so I think I will try for an early night tonight although I struggle to sleep at night these days.
So hopefully I manage to stay out of hospital for a while as it's Oliver's 1st birthday on Thursday and his little party on Saturday I can't believe he's going to be a year old already it's truly amazing how you can have so much love for one little person he's not even mine and I would do anything for him to protect him.
That's me for now I will update again soon.
So time to get you all up to date then, Friday was a good day my sister came to pick me up (incase you didn't already know she looks after me during the week while my mum is at work I can't thank her enough she really is a great sister and I love spending time with her it really makes me happy) she had to learn how to do the new IV drug but as usual she was a natural. So we got to leave just before lunch we couldn't get out quick enough. Once I got home I chilled for a bit then Lauren and Oliver arrived love seeing them, then everyone stayed for some dinner it was great. Me and mum stayed up quite late then decided to go to bed after some criminal minds.
Unfortunately Saturday morning was pretty rough I had a temp and was really struggling to breathe, honestly I could really have done with some new lungs then just for a relief, I work through the rough times pretty well I think but I have a few seconds sometimes where I think I can't take it I just want it to stop but I always manage through as I know it will always ease and get better. It got better and I had planned to go out to the cinema I got to go I couldn't believe I managed the cinema I have never been with the NIV machine before but it was fine. This has made me so happy and given me so much more confidence to do it again you don't appreciate the small things in life until the become obsticals put in front of you. I had such a great time and for the duration of the movie I felt normal whatever that is. I can't wait to go again soon.
Sunday I woke up feeling really good I felt good breathing wise too which I am always really grateful for as I know I could feel really breathless at any point. I saw my dad which was nice always good to him. Mostly just had a quiet day relaxing with my mum sister Andrew and Oliver again.
Today I am feeling okay had transplant on my mind alot today but I have those kind of days, quite breathless today and slept alot so I think I will try for an early night tonight although I struggle to sleep at night these days.
So hopefully I manage to stay out of hospital for a while as it's Oliver's 1st birthday on Thursday and his little party on Saturday I can't believe he's going to be a year old already it's truly amazing how you can have so much love for one little person he's not even mine and I would do anything for him to protect him.
That's me for now I will update again soon.
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