8.16.2017

Daily Gratitude

Just a very quick blog to let you know I'm still alive and haven't gone completely crazy yet! That said from Friday until Monday I'm on a liquid only diet and a shit tonne of laxatives (excuse the pun!) so sanity might take a dip then! 

Anyway to help me lately I've been trying to do daily gratitude. Basically as it says on the box. I think everyone actually does this subconsciously or not but to actually give thought to it for a few minutes each day is really nice. You're thinking on your blessings and realising the good things in life, can't be bad can it?! 
 
So I thought I'd share my list today, it's by no means extensive but I try to limit to 5ish things. 

1) I'm grateful for my parents who are incredible and constantly help and support me. 

2) I'm grateful for Lucky dog who always gives me love and hugs when I need them and makes me smile even if I'm crying.

3) I'm grateful I can breathe easily.

4) I'm grateful for the sunshine warming my skin.

5) I'm grateful for the breakfast I just ate so I'm not hungry and because it tasted delicious. 

6) I'm grateful to be able to see and hear and touch and taste.

7) I'm grateful for this lovely cup of tea I'm drinking.


So there you go! Not groundbreaking things but it's nice to acknowledge them and be thankful. 
What are you thankful for today? 
X

8.08.2017

The happy list!

Happy list! 

As promised here are a few things that have been making me smile lately. 

Lung Function.

This has to be the first thing. Numbers I've never experienced before and by no means are numbers the be all and end all but if feels pretty bloody good of a marker of how far I've come. 




Exploring 

Following on from the lung function, I've been going out and enjoying myself a lot more. It's not a direct result and some days I've still struggled with anxiety, fatigue or pain but it's felt really good to explore new places, be a bit more spontaneous and spend time with friends. There will definitely be some more posts about some of my new favourite places and some of the things I've been up to. 

















My new job

So, I have a new job! I haven't had a job interview in about 10 years, so it was quite intimidating! I am now a Tissue Donation ambassador for the south east region. The position is voluntary but I'm so happy to be able to give something back. It's been really interesting for me already, they are doing some incredible things at NHSBT and the people I work with are heroes doing what they do. Seeing their side and bringing it together from my patient experience sort of completes the picture. I will still be working with organ donation and promoting it wherever I can but tissue is a new and exciting area to learn about. 


Not a part of this job but it was also lovely to work with Michelle at The CF Trust to create more resources for patients starting the process of transplantation. Michelle and I have spoken a few times and last week, Michelle. Marcel, and Fergus came to my house to film, photograph and interview me. It was an absolute pleasure and they made it such a nice experience.











Alice in Wonderland

My music teacher has been a part of Holland Park Opera's open air production of Alice for the last few years and during that time I have become the official cake maker for the show! This year she invited me to come and watch the dress rehearsal and I absolutely loved it! Setting the opera in the park adds another level to the performances (we so nearly got away without rain too!). It was amazing to meet the cast and crew behind this beautiful show. To get so many photos of my cakes on opening night made my week too! 










Friends 

Ties into exploring but that wouldn't mean anything without the people I spend time with. I spent a lovely few days staying with my friends in Surrey last month. We weren't constantly doing things but just relaxing, spending time together, seeing her family and seeing bits of the local area. My friends name is Becky and she and her family made me so welcome! Even down to getting me gluten free goodies and putting chocolates on my pillow! 






Also going out with friends to enjoy nice food, drink and company. I've had some great chats and been to some great places with friends I've not seen for a little while. 
I've also had a lot of support when I've been scared about my upcoming tests. I've definitely got some good guys on my side.



Lush

Finally, I had a bit of a dud bath bomb the other week but the lovely people of Lush made up for it by sending me two replacement bombs. They are so good! I've just used the jelly bomb the big sleep and it was so relaxing. I was in a lot of pain and it really took the edge of. I'm a big fan of Lush and use a lot of their products and love their ethos. Thanks for such great customer service! 








7.31.2017

Amazing lungs and erm... Not so great everywhere else?!

Bloody hell, this is a bit of an epic writing session, still I'm determined and have Harry Potter on the tv and a cup of tea on hand so I will persevere! 

So, second part of the blog is health related. It just feels like a lots been going on and as I said in my last blog 
read it here,  I wanted to explain really why I've been struggling a bit mentally when it feels like it's been one thing after another. I do try to not let these things disrupt my life but every now and then it just gets too much and the big black cloud tries to engulf me.

As you may remember I fractured my foot for the 5th time in 2 years, in February. I had to use my crutches and air boot for some of my big Florida holiday which was a bit gutting even though wee still had an amazing time. Then a couple of months ago I ended up in A&E twice in one week because my foot was swollen, making clicking noises and extremeley painful. I was convinced it was broken. I saw a physio and he diagnosed me with metatarsalgia, basically because of the amount of breaks I've had the nerves between my metarsals are being pinched together and causes quite a lot of pain. After a good few weeks it finally seems to be under control but can flare up so needs to be kept an eye on. 

I then had an appointment to get custom inner soles to try and put less pressure on my toes so hopefully I have less pain. So I got those and they do seem to be helping even though I'm a bit gutted that I can only wear trainers really as they are about the only things I can walk in. 😒 they make me feel a bit like an old lady too.....

My physio has also given me some back exercises, they are great long term but can often be very uncomfortable to perform and difficult to fit into the day. This sounds a bit pathetic and I realise how good I have it compared to a lot of cf patients in particular but I still have drugs to take, blood sugar checks, insulin injections 4 times a day, treating any hypos, coping with pain and fatigue, exercise to lose a little weight and keep my lungs working optimally, a as well as work and general having a life. It's another thing that's not very nice to do but needs fitting in and sometimes it feels draining as though the hospital/health stuff is stealing too much of my time. Similarly it is just incredibly hard to motivate if I'm tired or in pain.

However there is also an: Excellent health news alert! I went to clinic on Monday last week and something incredible happened. You may remember my bucket list post. I'll jog your memory, number 33.....




MY LUNG FUNCTION IS NOW OVER 3 BLOODY LITRES!!!!!!!!!!!!! 
Which in visual terms looks a lot like this.....



I honestly nearly cried when I came out of the lung function room. I feel so grateful. This is the highest my lung function has ever ever been. I realise I am so lucky to have this as so many transplant and cf patients don't.

Aside from this amazing news, all was good from a lungs  point of view. I went to clinic early as I was feeling little under the weather and as I suspected my iron levels are low again so I need another infusion. Also a bone scan to check those baby's out too. 

I also had an appointment on Friday. You may not know that I have liver disease, part and parcel of Cf as well as a number of gastro issues. My liver and spleen are enlarged and have cirrhosis. Thankfully this has never really caused any problems and usually I go to clinic say hello and leave. However this time I hadn't been seen for a while as my consultant changed hospitals and it took a while to transfer over. Anyway, due to a bit of my stomach etc being a bit sluggish, and the fact that my iron keeps dropping (can sometimes be due to internal bleeding) added to the fact that due to immunosuppression and CF I'm more prone to certain cancers, it was agreed that I should have some check ups. I'm booked in for an endoscopy, a colonoscopy and an ultrasound. 
Ultrasound, fine. Endoscopy I've had before and coped but the colonoscopy has freaked me out completely. The Drs were so nice and I know it's for my own safety but the whole thing left me completely reeling. I think because I expected to be in and out, see you in six months. The mention of cancer however unlikely, and the barrage of let's face it fairly intrusive and embarrassing tests has really shaken me. 
Not helped by the fact that CF patients need 3x the amount of prep before a colonoscopy. That's 5 days low fibre and 4 days clear fluid only with I think 3 litres of laxatives on those 4 days. Even the dr said I'd hate him by the end of it. 

Anyway I've chatted to a lot of friends and got some vlogs on people's experiences and feel a bit better about it all now. It's still incredibly daunting, both procedure and results wise, and let's face it who wants a camera shoved up their arse? But I'm a bit more calm now and thinking practically about how I'll deal with it all. 

If any of you would like a bit of a blog about the whole process I'd be ok with that. I'm not talking coming into the procedure or too much toilet talk but maybe a video on the prep drinks and how I get on without food? Then a blog about how I've found it all?  Let me know. 

Anyway that's where I'm at. Lots of cake orders, a new job (more next time) and at least 4 more appointments and 9 days of restricted diet/ fasting/ not being able to leave the loo. Plus recovery times from all of it. It really pulls me down sometimes but it sure as hell won't beat me. 

Next post, in fact the next few will be more happy lists. To be frank I need the reminders of happy things and I'm going to be an overly emotional, hangry mess in the next few weeks so I'm hoping not to inflic that on you! 

Thanks for reading xxx
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