9.28.2016

Acceptance

Like I said on my last blog post, I was going to include these thought there but I think they need a space of their own.
My clinic appointment went really well last week. My lungs are doing really well, no infection or rejection. My lung function is up, diabetes is pretty stable, everything was good, and I am so incredibly grateful for that I truly am. However I think it's important to give you an honest picture of life after transplant as I always said I would, and there are still a couple of issues. 
For a long time now I have spoken about my pain and fatigue which are part of my daily life and fairly restrictive at times. My doctors and I have done test after test to try to get to the bottom of the fatigue. I've had extra high doses of steroids which have been absolutely horrendous in terms of how they've made me feel emotionally and physically. They have helped and over time I've weaned down to a dose which we would still like to get lower but at the same time, it's pointless if I'm losing all benefits to my energy which is kind of where I am now. Pain wise I've seen pain specialists, physio's, and rheumatologist's. I've tried some very strong drugs, heat pads, TENS, massages, exercise all with little to no success. 
It may sound ridiculous but weaning on to each medication, being battered by side effects, pushing through that to find no impact on pain at all, weaning off of the drug and then phoning/visiting hospital and starting the process again with another drug is soul destroying. Not only are you physically and mentally going through some very nasty effects, but each time you get your hopes up that this might work, only to find it doesn't. Another aspect is the institutionalisation. I've been ill all my life but it's very difficult to get out of that mindset post transplant when you still need to maintain daily meds but no where near as sick as you were. However when trying new drugs, feeling sick or rushing to the loo, dizzy or sleepy, you start reverting back to that. Cancelling plans, spending lots of time calling or visiting hospitals or having tests. It's easy to get sucked into the bubble again. I felt like this and didn't realise it straight away. I was really down, in pain, mentally and physically exhausted. 
It was only a few weeks ago that I realised how I was feeling and why, then I was able to take that mental step back; away from the confusion and emotion at the heart of everything, and look at the situation from a distance. 
 I saw my Pyschologist at my clinic. I didn't have anything specific to discuss but I think I just wanted to run through things out loud with him. I explained about the situation I'd got to and how I'd stepped away from it. Only then did I realise I needed to take control back of my life. I wanted to try and make things the best they could be, but sometimes you have to realise that can't happen. We all knew that I was pretty much at the end of things to try for pain and fatigue. There are no easy answers or a never ending stream of drugs or treatments to try. I could carry on with the side effects and constant hospital involvement but my quality of life will suffer. Do I really want to waste more precious time? Or do I to the best of my ability, go out and live with these problems, working round them and modifying to accommodate them? After all this time, rather than a drive to be perfect, I feel an acceptance. I will never be exactly as I want to be. My body has endured a lot and it suffers with fatigue and pain. Some days I have to give into them and change plans or stay in bed, but other times I can work with it rather than miss out or spend copius amounts of time at the hospital.

This is a huge deal for me as both my consultant and psych agreed separately. 

That's not to say acceptance is an easy thing. Knowing this is how it is doesn't mean I don't long for more like anyone else. I see people walk along with no pain, and I get jealous. I see people lazing around when they have more energy than I have, and I want to scream at them to go and live! They don't realise what a novelty these things would be for me. They don't spare a thought for how lucky they are.
In other areas I know I'll probably never have kids. It's a risk/ big strain on my body/ my life expectancy is reduced. That does not in any way make it easier to accept. I love kids and there are times I could cry (and do) at the fact that it's unlikely I'll have a family of my own. The typical husband, children, home, job, will never be mine and some days that tears me up inside. I can't imagine there would be a guy who would want to take on all my health issues and the fact they wouldn't be a dad, I would love to get married some day but would that be fair to marry someone I love then statistically not be around to live married life and put them through all that heartbreak of losing their partner? 

Acceptance is not a sudden lightbulb moment where you don't care about your problems or limitations anymore. It's more a calm, acceptance that you can spend all of your time railing against something that is unlikely to ever change, or you can find another way. It's not giving up. It's not being happy about your situation. For me it's about taking back control and being able to choose my own path.

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

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