I knew I did the right thing blogging about my mental block re homeworking; thank you all so much for your comments and emails and so many of you raised points I must admit I didn’t consider (like the trust element). I will most definitely look upon this as a positive progression and am now in a much more sensible mindset about it all. So thank you.

I did another talk on Monday evening, this time to some local Guiders. I really enjoy doing my talks and try to do them as often as possible (I think it’s just word of mouth really, I’ve never really advertised them as such) but of course they tend to be evening ones now I am working (I love saying that, although I did call myself a working girl quite proudly in public the other day then realised it is another name for a prostitute. Oops).

Anyway it went really well. I have a sort of format which I vaguely stick to but I adapt it depending on the amount of people, their background (eg: medical) and how long they want me to witter on for. I love doing those talks as I feel like I am actively doing something to help those waiting, but I do try not to smooth over any of the sad and upsetting bits as I feel people need to understand just why organ donation is such an acutely important topic. A was so fed up of helping me lug broken cardboard boxes around he has provided me with a large black suitcase on wheels for all my bits and bobs; infinitely easier to manoeuvre from talk to talk and so much more professional looking! The next one I am doing is mid June in Kingston, and is actually an open one so do contact me if you want to come along.

This afternoon was sad as I joined hundreds (literally) of other people to say goodbye to Sam. It was a beautiful service, the most heartbreaking bit listening to her group of close friends stand up and sharing through their tears their memories about Sam and what she meant to them. It’s so frustratingly hard watching; it didn’t have to be like this and I think on this side of the looking glass I feel it even more, just how wrong and unnecessary a loss like Sam’s is. I know how different it could have been, and the fact I am lucky enough to still be here...I don’t know I think it just makes it even more nonsensical. I felt so privileged listening to those who knew Sam best telling everyone all about her, and totally inspired by the bravery of her family and friends. I am thinking of them all tonight.

This evening however will be a happy one, as it is a year since A proposed, so we are going out to celebrate the year that has been amazing in every single way. I cannot believe how far we have come both together and as individuals in the space of 12 months. It has been an incredible journey so far and I am absolutely having the time of my life.

So I am now almost three months into my new job. 3 months! I can’t believe how quickly the time has flown...

I am still loving it there, there is so much to learn and it is quite fast-paced but that’s what I love I think, the new challenge and the opportunity to learn again and try and develop new skills.

Last week I finally agreed to start working 1 day a week from home. It was mentioned from the minute I joined, but I was determined to do a full week onsite, just like anyone else does. I wanted to do this for the first three months as in my head this was the time I really have to prove that I am worth employing (well I have to do that all the time but you know what I mean).

With recent things such as the arthritis diagnosis (thank you so much for everyone who has got in touch and/or posted info about this; it’s so helpful just to know other people have experienced it and are doing fine with it. I am fine too atm, so feeling good about the whole thing and the fact it shouldn’t interfere with day to day too much) it has started to make more sense to at least be set up for the option of homeworking, so if I can’t get into the office for whatever reason, it does not stop me from doing my job. And of course should the flu season/a stomach bug hit then I shouldn’t be on the train/in the office anyway….

So yes there are a million good reasons for me to be set up as a homeworker in case, and if I am I might as well do one day a week at home just to give myself back those few hours spent travelling. So why do I feel like a failure?

It is most definitely all in my head. My team are fantastic and have reminded me you don’t work any less hard when working from home! And of course it’s only one day a week. But I just feel…I don’t know, like I should be there, present in the office, every day for the full week.

As long-time readers of my blog will know, I am not particularly good at caving when I think something is a sign of me relenting to my health. I think this becomes even harder in a way post-transplant, as I am so much better than I was, I feel anything should be achievable. Mind you it’s not to say I couldn’t do a full commuting week, it’s just is 1 day less the better option for me? It probably is.

I’ve always been terrible at the thought of missing out on things too. I used to hate going in to hospital when I was at school, predominantly at the thought of life carrying on behind my back when I wasn’t there. Perhaps this is reminiscent of that…?

I am fully aware this blog makes no sense. I think I just needed to get it out of my system so I can move forward and accept the fact it’s not because I’m different or weaker than anyone else, it’s merely that that will suit my personal circumstances better and enable me to stay well and fulfil my role. Now I just need to believe that...

First BBQ of the year for my family yesterday! You aren’t supposed to have barbecued food post transplant so I always take mine off of the BBQ and head straight to the kitchen to nuke it in the microwave until it is rather small and sizzling. It means I get to enjoy the BBQ taste like everyone else but just in the safest way possible. I am totally overexcited about summer this year as let’s face it, last years was a bit of a no-show. And now it’s beginning to show, I am starting to get excited about my longest holiday since 2003 (2 weeks baby!!) which will be at the end of July…bring it on!

Oh and final point - LLTGL sent out it's first ever newsletter yesterday! Very exciting (well for me anyway!) If you aren't on our mailer but would like to be, please just contact us through the website (or email me) and we will get you on there. Yay!

I woke up very early on Friday morning. When I say very early I mean I had only gone to bed a few hours before and should have been sound asleep. The culprit was my hands, which were feeling rather odd and throbbing a bit, as well as feeling....well, clownish, which isn't as amusing as the description suggests. Just almost numbish, achy and awkward.

Being a mature grown-up independent woman I promptly woke A up to tell him (as clearly he needed to know at 3.20am that my hands felt a bit funny.) We couldn’t see anything visibly wrong and I eventually got back to sleep.

When I got up for work I jumped out of bed (am still in the process of loving my job) and yelped in pain as I put my weight on my right foot. It felt like I had sprained it, thoug I was fairly convinced that unless A booted me out of the bed as penance for my earlier disturbance, I couldn’t have physically done anything to it.

As I attempted to get ready for work I quickly realised this wasn’t going to happen. I was lolloping along like a doll that’s lost the stuffing out of one leg and couldn’t grasp things as my hands were too sore. A tad worried by this stage I decided to retire to bed and phone Harefield. The on-call wasn’t sure it was related to transplant but couldn’t rule anything out either so suggested I ring in again when the transplant nurses are on duty.

I am not very good at having health stuff going on and not understanding what it is (you can imagine what a joy this made me to treat post transplant can’t you) so got straight online to talk to any other CFers/post transplant people who might have had a similar experience.

I hobbled to the GPs to get a blood test on Harefield’s recommendation and the GP confirmed what a friend of mine I had spoken to online had suggested it might be; “I suspect it’s CF related arthritis”.

I was not amused. I don’t know much about this element of Cystic Fibrosis and anything you don’t know about is instantly scarier. From what I understand, there is no exact diagnosis for arthritis, it’s just if you show symptoms for some time I guess you have it. Today things seem much better, fingers still a bit sore and stiff, and I am a tad limpy still, but definitely better. I shall wait and see what happens, and try not to panic about silly things such as “oh god, how am I going to do the adidas challenge then?!” when we have no idea whether this actually is, or even if it is how it will behave. For all I know it will fade away and this will be the only flare-up I ever have. Or it might be totally controlable....we will wait and see.

On a much more sombre note, the CF community was all very saddened yesterday as we lost Samantha, known to most as Princess Sam. I had known her for some time, in fact she had wandered to my room when I was incarcerated with my old lungs, a chest drain in situ, to offer to order some pizza on my behalf as I was unable to move.

Sam’s health deteriorated and she spent the last 6 months pretty much living in hospital. During this time she held her head up, kept on going, and even did an interview with Cosmopolitan magazine to raise money for the ward she was stuck on at the Brompton (said interview will be in June’s edition and which she told her mum she still wants to go ahead...even though she will not get to see it.)



If you get a minute, please do have a read of Sam’s blog. It’s incredibly open and honest, and frank just tells it like it is really. She was a wonderful girl with a huge heart and will be very very sorely missed. Her family and her friends are in my thoughts right now, and I just wish so very much (and get cross thinking about it) that she had received the transplant she so desperately needed and so richly deserved. As Oli points out on his blog, it makes absolutely no sense why some of us are saved and others die, all we can do is use this sadness to fuel the fight to raise more awareness. Job for today if you are reading folks, please show people this beautiful girl who lost her battle yesterday and tell them to get online and sign up to the organ donor register.

Thank you