9.21.2016

Annual Review

So on Monday I had clinic at Harefield, but as my 5 year anniversary is coming up in a couple of weeks I had more of an annual review which is basically my normal clinic with a few extra tests thrown in and I thought you might be interested in seeing what goes on! 

The tests actually started on Saturday, with the ultra glamorous 24 hour urine collection! I had to make a "wee in a bottle" event on my phone to remind me! You basically do as it says on the tin, collect all urine over a 24 hour period the take the bottle full of wee as a present for one of the clinic nurses, lucky lucky ladies. 

Once I'd signed in on Monday morning, my first tests were bloods. There is only one vampire (as they are affectionally known by us patients) who is brave enough to bleed me, usually it takes at least two attempts to fill all the bottles but this time she got it all first time which is a miracle. I had to fast 12hours before the test because I had a couple of extra tests including one for cholesterol. Sueellen my lovely nurse kindly modelled the blood taking equipment for me to take a photo! 
After bloods I had oxygen saturations (measure of oxygen in the blood), blood pressure, weight and temperature all of which were fine. 

Next, I headed up to the lab for lung function tests. These are always a worry to me as they are really the most important tests of the day. Pre transplant it was always a huge deal and the decider between more meds or even a hospital admission. In the later years it was painful to see the numbers decline more and more. Now it's the difference between are things going well or do we have a potential problem? Even in the first couple of years after my new lungs the lung function wasn't climbing as quickly as we hoped so it's always a source of anxiety. Of course anxiety is the worst thing to engage with as it immediately stops you taking deep breaths. Anyway, the tests involve breathing normally into a tube connected to a computer. Normal breathing to start, biggest breath in you can manage, blow out as hard and for as long as you can and when you really can't push anymore a deep breath in. It makes you feel quite lightheaded! 
I needn't have worried because these were my best functions to date which made me very happy! To give you an idea the top two numbers are what counts, and pre transplant my top number was 1.4 and the second 0.66. 



I went back to the main clinic, feeling rather pleased with myself, and then saw the diabetic consultant and nurse practitioner. I have been using this monthly calendar to write down my blood sugar readings, I take them on waking, before lunch and before dinner. It's an ongoing battle between me controlling them successfully and the steroids making them go crazy, as well as any number of other things that can effect them. Again, I was slightly nervous about this as it had been a bit of a rough ride since I started the steroid treatment increase. I've felt under a lot of pressure and very disheartened after previous discussions. Therefore I was a little daunted as I handed her my numbers, and super surprised when she told me if she were diabetic she couldn't control them any better! That's like the ultimate compliment! It was really nice to have my hard work recognised and to see results, I put a lot of work in and sometimes it's not reflected so it was extra nice! 


Then I took you a random excited selfie in the bathroom! 



Next up was X-ray, literally took 5 minutes, and because I was on a mini high I asked if I could see the X-ray. It made my heart leap to see those lungs looking so clear.


After X-ray, I had to wait  a little while before my appointment with my psychologist, and later than that my consultant. It wasn't worth leaving the hospital so I ate some lunch in the car with my little buddy who came a long for the ride. Bless him it makes a huge difference to him and me for him to come with us, and he was such a good boy.


My appointment with my psych went really well and it was nice for both of us to discuss the progressed made and the ways in which I've changed since first starting our sessions. Things aren't always perfect but I'm more prepared now to deal with them. We also had a conversation about acceptance which I then continued with my consultant later that afternoon. I was going to include it here ug I think it actually warrants its own second blog so I'll be writing that over the next couple of days. 
In the break before I saw the doctor I had a few jobs to do. Firstly I went to deliver a card for my donors family. It's a process where I give my coordinators a card or letter, they read it and if it's ok (no personal details etc) they pass it on to the coordinators at the donors hospital. They then inform the donors family that they have correspondence, and then they can choose to pick it up, not read it, or to leave it until they feel ready to read it. I write every year on my anniversary just to say thank you and let them know they are in our thoughts. 
Second, I had baked some gingerbread for my nurses and the staff to say thank you for all they do for me. They went down very well! 


Thirdly, I had randomly written out a few little postcards and placed them round the hospital in random spots, addressed to inpatients or Harefield staff. They were just little notes saying if they were an inpatient, they were doing so well and that someone was thinking of them and wishing them well. If they were hospital staff, no matter what their job thank you for keeping Harefield going and making it a better place. I nearly didn't put them out but I'm so glad I did. One of my favourite nurses randomly found one and messaged me to ask if I had anything to do with it! I didn't tell anyone so she must be psychic! Similarly I heard that the inpatient ones were being shared on the wards which is lovely! I would never have thought people would be so pleased by them. It just shows how a silly little act can brighten people's day. 

Finally, I saw my consultant. He's not an easy man to impress, but it was so lovely to sit a chat with him and to see how his and my hard work had paid off. He was pleased with everything, my bloods were all good. There was a couple of issues that we discussed but again that's for the next blog. Overall it was great to have such a positive visit, and to see him so pleased with me, especially considering how ill I'd been at our consultations pre-tx. 
I'm not back officially for 6 months! 

I felt so genuinely happy and just filled with such an immense gratitude for how things are right now for me. Yes they can change tomorrow but for now all is well. Last week 3 of my transplant and CF friends passed away in quick succession. There are many more who are dealing with rejection, infections, 2nd transplants or other horrible health worries. It's been pretty distressing. It makes me even more grateful for what I have. For my donor, their family,  my parents, and all the staff here who have got me to where I am today. 50% of lung patients don't make it to 5 years post transplant and I am repeatedly reminded how lucky I am. 

Xxxx

PS: on a self indulgent note, if you like my blog I would be so grateful if you would nominate me for a Cosmo blog award http://www.cosmopolitan.co.uk/entertainment/news/a45587/cosmopolitan-influencer-awards-2016/ please don't feel obliged but I would love this blog to reach a wider audience so they can learn about how transplants save lives! Thank you x



8.25.2016

Anxious?

LSo last time I think I said I would give you some of my ways of coping with anxiety. Easier said than done! I started to make a rough guide then realised that what I was trying to condense into one post was actually about 3 posts worth. So today I'm going to talk about one kind, and save the others for if you want to hear them. Also want to make a disclaimer that this is my definition of anxiety, it might not be the same as yours, and what works for me might not work for you but even if one thing rings true or it gives someone comfort to know others feel they aren't alone in feeling like this, it's good enough for me.

So, on with the post. What I've been suffering with lately is generalised anxiety and low mood. I also get triggered anxiety which I would describe more as panic, which I'll talk about another time. The general anxiety and low mood, even depressive episodes is the most horrible feeling. It can come on quickly, you don't know when it will lift, and often makes you feel low, worthless and that everything is pointless or hopeless. It is hideous. I am in no shape or form an expert in dealing with this, far from it, but I'm getting to understand it a bit more and sometimes find that certain things help just a little.  

Often when the dark cloud descends I don't want to do anything. At all. And you couldn't suggest anything to interest me. I get that. However, my first tip would be, listen to your body and mind, and look for the windows of opportunity. So if you feel the darkness swallowing you up, or in my case, notice yourself getting angry or with little patience, learn to notice and get yourself to a safe place or at least be forewarned and forearmed. I find it really useful to recognise when emotions are overtaking me and to be able to step back a tiny bit and make it a little easier on myself. 

Second, what would make you feel better? Not as in, "cure all make it all better' as that doesn't exist but what would make you feel a tiny bit less despairing/ more calm? Laying on your bed staring at the wall? Crying? Punching a pillow? Curling up under a blanket? Whatever it is, do it. Think less about what you should be doing and more what would help even the tiniest bit. Suppressing everything inside often makes my bad times last longer. 

When you aren't at the absolute worst of your anxiety there are two things I recommend. Take a minute to think just how awful you felt, as though nothing would ever be any better than miserable. Realise that even if you aren't feeling happy or even content yet, you don't feel quite as bad as you did. Emotions and situations are temporary, you will not always feel like this. You have to be patient and ride it out but just recognising that how you feel changes so often if you actually pay attention makes you feel a little less desperate and hopeless. 

The other is to try and think of something that might make you feel content. Nothing earth shattering and do not, do not, put pressure on yourself to think of something or else you're not moving forward. Be kind do yourself even if it's the last thing you think you deserve. Below are some of the things that have helped me a lot over the last few weeks and long term, small but practical steps.

Reading

I literally read three books non stop, like an addiction. However it helps me in several ways, it's an escape, it can sometimes help me realease emotions I couldn't otherwise let go, and it's an easy low energy thing to focus on. I love books anyway but they become a lifeline when I'm struggling. 


Getting outside

This one was against all my better instincts but actually helped a lot. I hate being too hot and flying bugs and sweaty etc but I properly thought about what might help me and decided to take my breakfast out into the garden a couple of days. Then I spent virtually a whole day out there which I haven't doe since I was a kid! Brought back some nice memories and was a surprising way to help.



Gratitude
Trying to think of one thing a day that you're grateful for and then maybe 2 or 3 things. This one is proven to help people be happier as well as just being a nice one to try and helping you to again realise not everything is quite as awful as it seems. Things you often don't even think of. Being in ICU made me realise a lot of these as when you can't do them, you bloody miss them and realise how much you took them for granted. "I can see/hear/ speak"  " I have a roof over my head" " I really enjoyed ____ today" "I felt the sun on my skin" " I had a cold refreshing drink". 
Mindfulness is to me a slightly different way of looking at this. Rather than considering what you are thank ful, mindfulness is actually tuning in to enjoying it. So sipping a hot chocolate and focusing on how it tastes, smells, they way it warms your throat....... Appreciate being in the moment.

 Showers or baths
Showers become a huge indulgence. I think tactile things really help me. The warm water on my skin, the quietness, solitude, I can cry in there and no one knows, I feel clean and calmer after a shower. Once I realised this I thought how I could make it even nicer. I bought some of my favourite shower gels, sometimes I use a dry body brush or moisturiser. Whatever makes you feel a bit comforted! Massage, manicure or just painting my nails can do wonders.

Creative

I've always been a creative person, but sometimes even the most repetitive mindless tasks are really good for just zoning out a bit. My business is cake making and decorating, so dying fondant or cutting out shapes over and over can prove really helpful to provide a focus without the pressure to be "perfect". Any crafts I can do when exhausted are great for me, sewing, drawing, and calligraphy are current faves. Beware though, if you start to get frustrated leave it, I often get like this and it can make me feel much worse. Don't fall into the trap. Try something like a puzzle, sudoku, watch a film, a series (God Netflix is heaven to me! Especially Once Upon A Time) gardening, gaming, whatever works for you. 


Eat or drink

Obviously not to an unhealthy extent but the odd bit of what you enjoy, a Starbucks, coffee, tea, the odd piece of chocolate, a takeaway or something you really fancy, can help a bit. Don't be petty with yourself, it's again about being gentle with yourself. 

Make your space inviting

For me, rather randomly, fresh flowers give me a little boost. They just lift my spirits a little. Weird things like the sensation of a soft blanket, or the soft glow of a candle can all soothe my soul when it feels my nerves are a bit jagged. 



I'm sorry if this has been a bit waffley and not helpful but I hope if nothing else it might kick start some ideas of your own that might work for you. If you are struggling, please know you're not alone. Things will seem brighter I promise. 
I'm also going to take the time to say, if you are having a bad time, think about seeking help. I've spoken to several therapists, some have been helpful others haven't. It's often the last thing you want to deal with but they can help. If you had flu, or a broken leg you would seek out help from a professional to assist you, mental health is no different. 

Let me know if this was useful/helpful/ pants, and if you'd like to read similar posts and if you have your own tips/ advice or experiences I'd love to hear them xxxx

8.12.2016

Positivity

After my last post with all its rather rubbish medical stuff I wanted to write about some of the positives going on too. At the moment I'm struggling quite a lot emotionally and I'm not entirely sure why but random bursts of crying, feeling completely inadequate, insomnia etc, interspersed with more positive days is quite a confusing, draining time. 

But I thought I would tell you about some of the good things. 

Major first thing is that I am going to New York! I have always wanted to go for years, made and broke plans but I'm finally going in honour of my 5 years post transplant! I'm obviously not going to say when in case masses of you decide to burgle my house but between now and the end of the year we will be there! I'm super excited but super anxious too, about pain levels, fatigue and how I can work with the during our short stay. Any places/restaurants/things we shouldn't miss, please comment as we really need to start planning.

Next positive, starting an exercise schedule. Mainly for the muscle toning I'm in desperate need of, but also because I would like ideally to shed a couple of kilos I've gained from steroid use. Honestly, if you've ever been on steroids you'll know how crazy it is with wanting to eat constantly, even when you know it will make you fat, you can't help it. It's bloody tough going and I'm still working out how much I can manage without completely wiping myself out for the rest of the day. Again, feelings of inadequacy and pain levels really don't help with this either but trying to stay on track and do something at least. 

I've been having a big clear out of all my stuff. I seem to start this a lot then it just dwindled off. This time I seem to be doing a bit better at it. It's therapeutic to get rid of the old and then organise everything. It's as though one little bit of my life I can be in control of. I've gone slightly crazy about storage solutions though.....whsmiths and homesense are my happy places! I could literally spend all day in homesense....

I passed both my music theory grade 4 (distinction) and my singing exam (one mark off a merit) which I was convinced I'd failed due to nerves. So that was a really nice boost.

I completely adore the new Paralympic ad, and thought it was worth mentioning here. If by chance you haven't seen it, WATCH IT NOW!!! It's an incredibly feel-Good, inspiring, ballsy, can do ball of brilliance. Watch it, take it in, be inspired.

Something that isn't a positive strictly speaking but that I think will be good for me, is that I've gone cruelty free. Cruelty free means that I only use products that have not been tested on animals. You thought that no cosmetics etc were tested on animals anymore? Think again. 
Many companies decide to sell abroad namely to China which requires animal testing to be able to legally sell there. Companies do not need to sell in China, they do so solely for profit and by making this choice they condone animal testing. Which I think is a little bit disgusting in this day and age. As a result I will not be giving these companies any more of my money.  If you're interested in finding out more visit Petas website or google cruelty free. I've had comments that why do I bother when my medicines have been tested on animals? My answer is, I can't stop taking my medications. If I did I would die fairly quickly and that would be the ultimate disrespect to my donor, my family, the nurses, doctors and surgeons who have fought to keep me going all these years. However things like make up, body wash, toothpaste? That's a choice I can make and I would rather go without than use products tested on animals. 

My last one is that I have been trying to practise gratitude. I don't have one of the fancy gratitude journals yet (possibly in the future) but everyday I try to appreciate a small part of my day, actively log it in my brain: the sun on my face, breeze on my skin, the taste of a particularly good cup of tea, the softness of Lucky's fur when he's curled up next to me.  I'm hoping this is going to amount to more happiness in my life overall but even these little bits are a great start. 

So in short I wasn't sure whether to write or not but here it is. I'd LOVE to hear from you, would you like to know some of my favourite cruelty free products? I'm just learning myself but would be happy to recommend or hear your recommendations. New York tips? 
Also I am considering doing some short videos about certain topics, 5 minutes or so of me talking to camera like in a blog post but speaking directly to you. Would you be interested? What would you like me to talk about? 

Sending you all love and light. Enjoy your weekend. Xx
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