Time flies when your feeling rough…

I can’t believe we’re in December & it’s Thursday already.
I haven’t written for a few days and time has just flown by, it’s been all go, and as I’ve become poorlier, it doesn’t even feel like I’ve rested all that much as been at three different hospitals three out of the four days!!

Monday I was in Totnes, having my diabetic retinal screening, this doesn’t take long, but they’ve enforced the new policy now where you have to have the eye drops so are unable to drive afterwards, Stef took me and I’m relieved he did as I couldn’t see out of them properly for a good few hours later, christ did they sting!

I’ve been really struggling since the weekend, Stef got my oxygen on Sunday for me to use and as the days passed I could barely walk into the kitchen or toilet from my living room. Dressing myself has been so difficult, if Stef has been unable to help me, it‘s taken me a ridiculous amount of time with resting in between.
I really needed to be seen, so chased my CF Team in Exeter & went to clinic on Wednesday. Stefan needed to sleep as he is doing quite a few nights linked together again, so my lovely friend Mitzi accompanied me, as I couldn‘t walk and needed to be driven around in a wheelchair. Which she did, quite spectacularly, with a few mishaps, in a bush, a few wall’s and an old ladies knee!!

They wanted to admit me, but they know how much I dislike admissions and agreed that at least at home I will eat and be able to sleep more in my own home comforts than I do in a side room on the ward.
Being home makes me happy and I think that helps a lot with recovery rather than being depressed and upset wishing you were elsewhere…

We got the ball rolling with treatments, I had my gripper accessed so I could have my first dose of IV Mereopenom in Torbay Hospital the following day to save me driving back up to Exeter.
The treatment Harefield suggested I try for my aspergillus was written up & I picked it up from my pharmacy when we came home. I was quite shocked when I opened the packet as realised it was Itraconazole and I knew I had been on this before, years ago, but still had it and obviously I thought this treatment that has been suggested was something new and amazing that might actually improve things for a while. It’s been a few years so obviously I’m going to take it and see what happens, no point in being negative, just had a bit of a ‘oh, great’ moment!!

I told them about what the co-ordinator said regarding the results of my urine investigation, so have to do a specimen Friday morning, I’ve got an ultrasound on my kidneys booked for next Thursday. Then the following Thursday, I’m seeing the renal specialist consultant to make sure there isn’t something going on that could prevent me from being listed.

Today, I was hoping for a good sleep but we were rudely awaken by noisy diggers in our courtyard at 8am, we only got the letter yesterday so it really pissed me off to say the least! Poor Stef had only been home for an hour and we were both completely sleep deprived, there wasn’t a chance we could get our heads down as it shook the whole house.

We waited for my IV delivery from Bupa and then Stefan took me to Torbay Hospital where I met my physiotherapist Alice to oversee my first dose. (cf’ers that do home iv’s always have to have the first dose in a hospital in case you have an allergic reaction)

Mereopenom is the only IV I feel makes a real difference to my chest after a few days, but it does make me incredibly sick. I wasn’t feeling on top of the world as it was, what with being so tired and struggling to breathe but as soon as the dose started trickling through my line, my nausea feeling increased and I was violently sick. I couldn’t breathe through my nose as it was all blocked and as I was being sick I just couldn’t get any air, its very scary at the time. Alice even said I went blue for a few seconds!! After I was sick, I took some deep breathes and managed to calm down and just passed the time talking to Alice and Stefan about Harefield and things.
Alice said that after my course of treatment we would have the meeting regarding my exercise programme to gain and maintain as much strength in my legs before and during the wait on the active list.

As Stefan drove us back home I was completely drained and could barely keep my eyes open, so noisy diggers or not, I went to bed and slept….
I must have really needed it as didn’t wake up again until it was pitch black in my room and come dine with me was on!!

Before I go I just want to say a bit about Monday nights BBC3 documentary, Love On The Transplant List.
I was really pleased that a lot of my friends, family and blog followers took the time to watch it. It certainly has spread awareness far and wide and I know that many people have signed on the donor registration list since the programme. It was incredibly hard for me to watch, to see someone I know so well suffer so badly, go down hill at a rapid rate and to know what it is like to suffer just like that at times.
Very emotional but also a fantastic insight into just how CF can upturn your world. A very well done to Kirstie, Stuart & her family for letting people see them at their most vulnerable, I knew what was coming but I think it would have been even worse if the journey had an alternative ending.

Tomorrow, as long as I’m well enough to endure the car ride, to cheer me up, my lovely hubby is treating me to an early crimbo present, my thirteenth tattoo!! It’s only little but I love it and have wanted it done for ages, so as long as I can get it done, I will post a picture next time for you all to see.

Thank you to everyone for their support in the last week, if I don’t reply to texts or messages straight away please don’t worry. The next few day’s are going to be difficult as my side affects to the IV continues until my body gets used to it, I’m also going to need to catch up on my rest as it just feels like I haven’t stopped, thank god those dam diggers are only there for one more day!

Hope you all had your first chocolate on your advent calendar this morning, and have a lovely weekend…. xx