Two blog posts in 24 hours, very unlike me! The reason for this post is that I woke up this morning to 126 new emails, loads of new tweets and facebook messages. After wondering what the hell was going on I realised that the BBC interview I had done for their website had gone live cue lots of lovely comments and feedback on it. You can find it here if you haven't had a read. Its fantastic to have so many new people get in touch and say the article made them sign up and to read all my tweets and comments of support. Hello new readers! *waves to you all*
I thought I would post a quick entry as lots of people are asking how to sign up to the organ donor register. You can do it <strong>here online and it literally takes 2 minutes to do.
I'm hoping that some of my new readers may like to become a bit more involved and help me spread the word about organ donation so here are a few ideas to get you started. I'm happy for anyone to use the links to my articles, blog etc if they think it will help.
.Email 10 people (or better yet even more)telling them about organ donation and giving the link to sign up. Ask each of them to pass it onto their friends too.
•Send a tweet asking people to sign the organ donor register and include the link to sign up http://tinyurl.com/ldkrcz
•Tell all your friends on facebook why it's so important to sign up!
•Talk to people in you're workplace about signing up. Put leaflets or a poster in your staffroom to get them interested. You could even set up computers to the organ donation register so they can sign up then and there. Promotional materials can be found here
•Do you write a blog? Why not write a post about organ donation and the difference it can make.
•If you're feeling adventurous take up a challenge event/ make a donation/or have a fundraiser for LLTGL so they can continue their lifesaving work promoting organ donation and supporting transplant patients. Check out their website for more fabulous ideas for getting involved!
It couldn't be simpler to get involved and could literally be the difference between life and death for people like me. Leave me a comment and let us know what you've been up to! I would love to hear your stories and ideas.
x
Saturday, 23 October 2010
Friday, 22 October 2010
A very tricky balancing act
I'm a bit stuck for what to write today but felt I needed to unload some of my overcrowded mind. I don't know what to write because, although it sounds weird, I don't know how I'm feeling. It's not as clear as being happy or sad or angry, I'm not ill, but I feel.....not right.
Physically I don't feel ill, temperature has been checked, oxygen levels too, I'm not coughing more or doing anything different to normal which would be a cause for concern, I've had 2 blood tests in the last two weeks and my infection levels are fine. I think the best words to describe how I feel is run down, my energy levels are rock bottom and it's a real struggle to find that "get up and go". By the time I've got washed and dressed in the morning I'm worn out and it just gets worse during the day. I tried to get myself sorted out one rare morning when mum had to go out, thinking "well I can run myself a bath thats no too draining, is it?" Turns out yes it is too draining, by the time I'd run the bath, got in, got out, got dry, got dressed I was literally retching because i was so breathless. It was exhausting physically but also a hard knock mentally too, sometimes i kid myself that I choose to not push myself too hard because its simply not worth the pay back healthwise but the reality is I actually can't do these things without help anymore.
Aside from that I just seem very lethagic, achey and generally run down. Like I say definately not ill, I wouldnt even say sickening for something just feeling like my reserves of energy aren't there. Since HArefield I've been pretty worn out and just doesn't seem to have got much better.My skin is rough and dry no matter how much I drink/moisturise/exfoliate. The last few days I've had times when my stomach went into meltdown with cramps, bloating, aches and bowel problems (lovely!). I've also had times when my breathing has been a real effort. Not constantly but enough to wear me down. No matter how much I rest it makes no difference and decent sleep is also very hit and miss.
It's kept me on my toes mentally and emotionally too. Being so worn out make me emotional and weepy because I don't know what to do to help myself. I am someone who needs to try and "fix" problems and know that I'm doing all i can to help myself but at the moment its like everything I do goes into the big black void. I'm on everything I can be on to keep those pesky airways open and yet they still seem shut most of the time.
My brain feels like its been blitzed at present. I think I was more stressed than I realised about the Harefield visit and since then have been panicking at silly things. Everytime my mobile rings I literally freeze. You've heard the saying "your blood runs cold" thats the best way to describe it, my heart beats fast and my breathing just goes. Its insane and irrational as my life depends on the mobile phone ringing!!Since Harefield I had a slight worry about one of my blood tests (all fine now) but that completely panicked me too, wondering what would need to be done. I definately have my panick mode when the hospital ring, its pure fear about them saying something is wrong that needs addressing. I am in no position to "think about" treatment, they say this needs doing an I have to say when are we doing it then. Its quite a lot of pressure.
Added to that are uni work which is difficult to fit in with how im feeling and also pretty stressful, Christmas presents which have to be bought online mostly as shops are a nightmare near Xmas and the wheelchair doesn't stand a chance. Everyone I know has colds and there are loads of bugs going round so again I am constantly worried in public places when theres coughing and sneezing going on so I'm trying to avoid crowds. It may seem extreme to some people but I've waited 3 years for this transplant there is no way I am getting a call and being sick with a cold so it can't go ahead. It means sacrificing going out but I will just have to play it by ear and do what I'm comfortable with.
I often feel like life at the moment is a very precarious balancing game, a tiny touch and things yo yo out of control. It's a very delicate buisness and getting one thing feeling better puts something else out of balance. You're constantly having to tweak things to try and keep everything from going awry.
So, my scrambled brain and I are going to leave you now. Heres hoping that things straighten out a bit soon and I can report better things next time. :)
Physically I don't feel ill, temperature has been checked, oxygen levels too, I'm not coughing more or doing anything different to normal which would be a cause for concern, I've had 2 blood tests in the last two weeks and my infection levels are fine. I think the best words to describe how I feel is run down, my energy levels are rock bottom and it's a real struggle to find that "get up and go". By the time I've got washed and dressed in the morning I'm worn out and it just gets worse during the day. I tried to get myself sorted out one rare morning when mum had to go out, thinking "well I can run myself a bath thats no too draining, is it?" Turns out yes it is too draining, by the time I'd run the bath, got in, got out, got dry, got dressed I was literally retching because i was so breathless. It was exhausting physically but also a hard knock mentally too, sometimes i kid myself that I choose to not push myself too hard because its simply not worth the pay back healthwise but the reality is I actually can't do these things without help anymore.
Aside from that I just seem very lethagic, achey and generally run down. Like I say definately not ill, I wouldnt even say sickening for something just feeling like my reserves of energy aren't there. Since HArefield I've been pretty worn out and just doesn't seem to have got much better.My skin is rough and dry no matter how much I drink/moisturise/exfoliate. The last few days I've had times when my stomach went into meltdown with cramps, bloating, aches and bowel problems (lovely!). I've also had times when my breathing has been a real effort. Not constantly but enough to wear me down. No matter how much I rest it makes no difference and decent sleep is also very hit and miss.
It's kept me on my toes mentally and emotionally too. Being so worn out make me emotional and weepy because I don't know what to do to help myself. I am someone who needs to try and "fix" problems and know that I'm doing all i can to help myself but at the moment its like everything I do goes into the big black void. I'm on everything I can be on to keep those pesky airways open and yet they still seem shut most of the time.
My brain feels like its been blitzed at present. I think I was more stressed than I realised about the Harefield visit and since then have been panicking at silly things. Everytime my mobile rings I literally freeze. You've heard the saying "your blood runs cold" thats the best way to describe it, my heart beats fast and my breathing just goes. Its insane and irrational as my life depends on the mobile phone ringing!!Since Harefield I had a slight worry about one of my blood tests (all fine now) but that completely panicked me too, wondering what would need to be done. I definately have my panick mode when the hospital ring, its pure fear about them saying something is wrong that needs addressing. I am in no position to "think about" treatment, they say this needs doing an I have to say when are we doing it then. Its quite a lot of pressure.
Added to that are uni work which is difficult to fit in with how im feeling and also pretty stressful, Christmas presents which have to be bought online mostly as shops are a nightmare near Xmas and the wheelchair doesn't stand a chance. Everyone I know has colds and there are loads of bugs going round so again I am constantly worried in public places when theres coughing and sneezing going on so I'm trying to avoid crowds. It may seem extreme to some people but I've waited 3 years for this transplant there is no way I am getting a call and being sick with a cold so it can't go ahead. It means sacrificing going out but I will just have to play it by ear and do what I'm comfortable with.
I often feel like life at the moment is a very precarious balancing game, a tiny touch and things yo yo out of control. It's a very delicate buisness and getting one thing feeling better puts something else out of balance. You're constantly having to tweak things to try and keep everything from going awry.
So, my scrambled brain and I are going to leave you now. Heres hoping that things straighten out a bit soon and I can report better things next time. :)
Monday, 11 October 2010
Brand New Look!
Welcome to the new look Past the Point of No Return! What do you think?? Isn't it pretty?!
My lovely friend Louise recently had her blog made over and very kindly nominated me for a write from the heart makeover from the lovely people at Adori Graphics. The company create website and blog designs and also offer to makeover blogs that are used for therapy. I had long consultations over what I wanted on my redesigned blog and they have done a fantastic job making it look even better than I imagined.
I wanted an elegant theme that reflected the kind of designs I like. The chandelier graphic is beautiful and ties in with my love of Phantom of the Opera and all things theatrical ( after all I am more than just my illness). I thought it would be amazing to have my blog do more than just record blog posts, so I asked if I could have tabs that linked to my press and media work as well as a page to tell my readers my story. In the next few weeks I'm hoping to get more people reading the blog, passing it on to others and in turn signing the organ donor register and saving lives.
I am so grateful for the Adori teams design and the hours they spent creating it for me. I'd love to know what you think so please leave me some comments. Until next time enjoy having a look round :)
My lovely friend Louise recently had her blog made over and very kindly nominated me for a write from the heart makeover from the lovely people at Adori Graphics. The company create website and blog designs and also offer to makeover blogs that are used for therapy. I had long consultations over what I wanted on my redesigned blog and they have done a fantastic job making it look even better than I imagined.
I wanted an elegant theme that reflected the kind of designs I like. The chandelier graphic is beautiful and ties in with my love of Phantom of the Opera and all things theatrical ( after all I am more than just my illness). I thought it would be amazing to have my blog do more than just record blog posts, so I asked if I could have tabs that linked to my press and media work as well as a page to tell my readers my story. In the next few weeks I'm hoping to get more people reading the blog, passing it on to others and in turn signing the organ donor register and saving lives.
I am so grateful for the Adori teams design and the hours they spent creating it for me. I'd love to know what you think so please leave me some comments. Until next time enjoy having a look round :)
Sunday, 10 October 2010
Harefield report
Thank you for all the messages of good luck for the hospital whether it was by text or tweet. I was dreading Wednesday's appointment if I'm honest. It's always good to go to transplant clinic in one way because it'd good to touch base and to see the lovely staff especially the coordinators who are my main point of contact. On the other hand it is a very long and tiring day, from the 1 1/2 plus journey there and back, the inevitable traffic jams we get stuck in, the different tests I have to undergo and the worry of what will be said. I've had some difficult visits at Harefield before when my weight was very poor etc and in the back of my mind I'm always thinking "what am I going to have to face this time? What am I going to have to work at to make things right". My raison d'etre at present is to keep myself going for transplant, so if Harefield say jump I have to say how high.
Fortunately, this visit was probably the best I've had at Harefield. I had my bloods taken as soon as we got there and apart from one test that needs to be rechecked everything was fine. Lung function was almost the same as last time which is in itself amazing to be so steady. Xray and ECG were fine and my weight was slightly up on 6 months ago. Its astounding to think that just over a year ago my weight was such a huge insurmountable problem that led to me being suspended from the transplant list. Back then my weight was 41.9kg now it's 50kg and stable.
The doctors and co-ordiantors were pleased with me and we had a really good chat about how much I'm struggling and how there isnt anything to make a difference to how I feel now. They have assured me that I haven't been forgotten and that as soon as a match comes up for me I'll be called in. It sounds silly but when your waiting at home everyday for a call that never comes, just to be reassured does make you feel safer, it was good to have a really long discussion and tell them exactly how I'm feelingand to know that they are happy that I'm doing all I can to maintain everything at home.
Since my visit I have been absolutely exhausted, some days I've hardly got out of bed as I just feel so tired and worn out. It's really disconcerting to feel even weaker than usual and reminds me just how fragile I am right now. I've been up and down emotionally this week, I don't really know why but I keep reminding myself that it will pass soon.
Fortunately, this visit was probably the best I've had at Harefield. I had my bloods taken as soon as we got there and apart from one test that needs to be rechecked everything was fine. Lung function was almost the same as last time which is in itself amazing to be so steady. Xray and ECG were fine and my weight was slightly up on 6 months ago. Its astounding to think that just over a year ago my weight was such a huge insurmountable problem that led to me being suspended from the transplant list. Back then my weight was 41.9kg now it's 50kg and stable.
The doctors and co-ordiantors were pleased with me and we had a really good chat about how much I'm struggling and how there isnt anything to make a difference to how I feel now. They have assured me that I haven't been forgotten and that as soon as a match comes up for me I'll be called in. It sounds silly but when your waiting at home everyday for a call that never comes, just to be reassured does make you feel safer, it was good to have a really long discussion and tell them exactly how I'm feelingand to know that they are happy that I'm doing all I can to maintain everything at home.
Since my visit I have been absolutely exhausted, some days I've hardly got out of bed as I just feel so tired and worn out. It's really disconcerting to feel even weaker than usual and reminds me just how fragile I am right now. I've been up and down emotionally this week, I don't really know why but I keep reminding myself that it will pass soon.
Saturday, 2 October 2010
Distinctive
Even though I only posted a week ago quite a few things seem to have happened so thought I'd write an update while I had time. I'm starting my new literature course this week and spare time is going to be at a premium! I must admit I am really daunted by this course, it's called "the nineteenth century novel" and from what I've read so far is pretty hard going. It really is so difficult to study now compared to when i first started, I have the constant niggling thoughts that transplant could come at any time and stop study which in turn would lose me work and money, not anything in the grand scheme of things but irritating. Same deal with sudden drop in health. I have lots of times when I get too tired, sick etc to work and then have to catch up, plus study time is greatly restricted by my treatment regieme. None of this helps with feeling daunted by it all! At the same time am i prepared to let CF take one more aspect of my life out of my control? Hell no! It definately doesn't do for me to have too much time on my hands so I push myself pretty hard (often to the point where I take on a little too much).
I have a couple of good pieces of news. First of all last time I posted I said that I had appealed my last course result and as a mistake had been made it was being reviewed. Last week I heard that my result had been changed from a grade 2 pass to a distinction! I am a very happy bunny about this as I was so close to this grade and now it has been reconsidered I've finally got it. It just shows that you should always fight for what you think is right. This now means that I am on target to achieve a 1st at degree level, although this is a long way off yet.
Second piece of good news is that last week I had my iron infusion. I was in as a day case and the nurses on the ward were lovely, extremely kind and friendly. I am (as readers know) not great with needle and canula's but this time it went in first time with no problems. The infusion went through and after observation to make sure I had no reaction to it I was free to go. I felt pretty tired and giddy from the exersion but otherwise fine. I'm so glad that I haven't experienced any gastric problems like I did on the tablets as that was horrendous.
Third piece of good news it that it looks as though my little blog will be getting a bit of a make over! I was asked if i would like one by a lovely team who offer this service to those who blog for therapy and i jumped at the chance. It won't be underway for a few weeks yet but I am very excited about geting my blog made to look all pretty! I can't give anyway any design secrets but keep a look out and hopefully you will see the new look appearing in the future.
I'm up to Harefield (my transplant centre) next Wednesday for clinic, which although it's good to keep in touch with the team will also result in a long and exhausting day. Healthwise I am the same as usual, feeling tired and breathless doing very little and despite being on maximum bronchiodialtors (for opening the airways) I am still very closed down and generally struggling rather a lot. Here's hoping that call isn't too far away. It's nearly a year since the last one and I think I'm due another don't you?
xx
I have a couple of good pieces of news. First of all last time I posted I said that I had appealed my last course result and as a mistake had been made it was being reviewed. Last week I heard that my result had been changed from a grade 2 pass to a distinction! I am a very happy bunny about this as I was so close to this grade and now it has been reconsidered I've finally got it. It just shows that you should always fight for what you think is right. This now means that I am on target to achieve a 1st at degree level, although this is a long way off yet.
Second piece of good news is that last week I had my iron infusion. I was in as a day case and the nurses on the ward were lovely, extremely kind and friendly. I am (as readers know) not great with needle and canula's but this time it went in first time with no problems. The infusion went through and after observation to make sure I had no reaction to it I was free to go. I felt pretty tired and giddy from the exersion but otherwise fine. I'm so glad that I haven't experienced any gastric problems like I did on the tablets as that was horrendous.
Third piece of good news it that it looks as though my little blog will be getting a bit of a make over! I was asked if i would like one by a lovely team who offer this service to those who blog for therapy and i jumped at the chance. It won't be underway for a few weeks yet but I am very excited about geting my blog made to look all pretty! I can't give anyway any design secrets but keep a look out and hopefully you will see the new look appearing in the future.
I'm up to Harefield (my transplant centre) next Wednesday for clinic, which although it's good to keep in touch with the team will also result in a long and exhausting day. Healthwise I am the same as usual, feeling tired and breathless doing very little and despite being on maximum bronchiodialtors (for opening the airways) I am still very closed down and generally struggling rather a lot. Here's hoping that call isn't too far away. It's nearly a year since the last one and I think I'm due another don't you?
xx
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