These orals better kick this infection in the balls.

I feel like I've hit that oh-too-familiar downwards spiral that I recognise from pre-Kalydeco days.
Over the past few days since I last blogged this cough has started. First of all it was your usual 'I've got a cold' tickley cough. Thursday night I was feeling pretty flushed and my temp was slightly up, not too much so wasn't particularly worried. But overnight my cough changed, I woke up at 6 for my tummy meds and was coughing away for a good few minutes. Not impressed I chugged down the meds and went back to sleep hoping it was just a bit of post-nasal drip that had set me off.
I woke up a few hours later and felt all out of it and my cheeks were bright red. My cough was further down my throat and so painful. Luckily the thermometer was right by my bed so I reached out for that - 37.8 shit. I've had temperatures way worse than that before, don't get me wrong, but the fact it was nearing to 38, I was coughing & judging by the way I felt I knew too well this was how my chest infections begin. I tried to dose in and out of sleep all day Friday but I kept coughing just as I was dosing off and it made me jump!
My friend Katie came to cheer me up in the evening so we had a lovely chilled girly night.
I realised at the end of the day and checking my temperature, popping pills and all that malarkey that after 3 or 4 hours my temp was right back up. My heart sank. Usually I used to have a temp and it would go and stay down for a fair bit, but the past two times I've been really ill it's been hard to manage. Yes again I know it could be a lot higher and it has been a lot higher but 38 is pretty high and I just can feel something inside that's taking me back down that slope.
Today I woke up, same thing but my cough again had moved further down and now it sits and the top of my chest which is bloody agony! Every time I cough it feels as though my collarbones are breaking. My temperature is doing the same thing.
Also, I feel like I have an elephant sat on my chest permanently, so if someone could remove it I'd be most grateful! :)
I've got Jess over this evening for a film night in, we were meant to be going out for some drinks but it's too much of a struggle. I managed to go out for a little while earlier to buy some fondant to make cupcakes for mum and dads 25th anniversary on Tuesday but that was hard, every time I cough when I'm walking I feel as though I'm going to pass out!
So we will see how I go over the next couple of days. I have a clinic appointment on 4th October so just under two weeks but if this carries on I think IVs are inevitable - not what I want as it's two weeks off work :(
It really is scary when you lie there at night with a horrible temperature, coughing literally every 10seconds (if that!) especially when you've had such bad experiences in the past, it immediately brings that flooding back. My breathing varies throughout the day, seems to be worse in the evenings but I've got my lovely nebs! I'm really hoping these orals that I'm on kick this right in the balls so I don't need IVs or hospital and I don't get as sick as I have been before. I'm willing my little lungs to keep going, I really don't want to start heading back to being very ill, unable to walk far. You never know how you're going to be though, the fact this has all started in a matter of days you can't tell if you'll become very ill very quick or if you'll be fine after some orals and week of rest. So you've just got to make the most of what you're doing now and keep plodding on :) only thing to do!
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Body is going tits up!

Why is it that your body seems to be perfectly fine for a while and then decides to throw a wobbly?
Monday I made an emergency appointment to see Dr Higton on Tuesday - I thought my blockage had got better but it came back with a vengeance. The past few evenings my lungs have thought they'd join in the action too and yesterday I felt awful, just in time to see the doctor. Obviously lungs were fed up of my stomach having more attention than they did.
I had two abdo X-rays which confirmed my stomach issues. Radha popped in to do my lung function but unfortunately it had dropped to 1.7 so I've started on some orals in the hope they will help things. Fingers crossed I won't need to go on any IVs!
Yesterday evening I really suffered though, searing and shooting pains through my left lung and then just lung pain all the time in various areas - I have never had lung pain that bad, I was in agony and breathing was such a challenge too.
Hospital know me too well and know that within a couple of days I would have rushed straight back to work and doing loads of things so they have said no work this week & to rest at home..need to sort out my stomach first plus we don't want my lungs straining hard and getting a lot worse.
This morning I'm feeling really sick so just relaxing in bed for a while before I feel like I can move.

But never mind, I keep on plodding on and hopefully in a few days I'll be feeling more like my usual self! The past week I've had a few emotional days for various reasons so it's quite nice to relax now & reflect over things that have happened.
I'll try and update in a few days, lets hope it's good news!


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A year can feel so quick and so slow

One year ago I lost my lovely friend Samantha Morris. One year ago I lost the first person I met in Frimley cf unit, the girl who supported me when I was so ill and scared. Sammy was the toughest chick I've ever met. Tuesday 17th September will always be a date that sticks in my head.
A year has felt so slow, a long year where I'm always thinking of her, trying not to cry in the anger, hurt and emotions that come flooding back every single time I think about her, even in happy memories I find myself laughing and crying at the same time. Although I can hear her calling me a dopey cow and to stop crying!
Yet in another way a year has gone so quickly. I can't believe it's been that long when it feels like barely anytime has passed since we were chatting away, sneaking out of our hospital rooms to chat in the corridor!
I miss Sammy so much but she inspired me to stay strong. Stay strong like she did. And if I can have an ounce of the courage that she had, then I'll be proud of myself.
Today mum and I went into the park and did a balloon release in memory of her. The minute we stepped out the car the heavens opened and the minute we got back in the car it stopped! So I knew that was Sammy making sure we didn't cry but laughed as slipped down the hill!

I miss and love you Sammy ❤



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Bloomin' Blockages!

The past few weeks I've had a niggling feeling in my stomach that I usually get when a blockage is beginning so I had a few movicol once/twice a day to see if it would help. But Saturday morning I woke up and half way through getting ready my stomach made the most strangest of noises...almost like when you turn a tap on, it gets an air lock and splutters! Not long after, I was sat on the sofa feeling rather hot, took an antisickness tablet as I suddenly felt very ill and curled up. I just wanted to cry with the stabbing pains in the top of my stomach and with the intense sickness that I hadn't felt in a long time. Not long after I just had to go to the bathroom and was ill. Felt so much better. The minutes feel like hours when you feel that ill. I went and got a drink but every time I had a few sips it just wouldn't stay down. After a while mum wondered whether we should go to a&e as I couldn't keep any fluids down and was starting to get too dehydrated. I ended up drinking a little more and falling asleep on the sofa and after 15 minutes woke up but started to feel better.
Luckily I managed to keep liquids down so after 4 hours I tried to eat a bit of food and that was okay.
Today I've still not been ill which is great, I've had some stabby pains but not as severe, I've stayed on top of the movicol and made sure I've been drinking plenty. I'll probably ring clinic tomorrow and speak to Judith, let her know what's been going on (just in case they want to see me) and arrange a port flush. Then have a nice day out with mum and a girly night in with Luci before work starts on Tuesday :)
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Location:Bloomin' blockages