The weeks seem a little longer. I remind myself the weeks are fine in isolation, its off the back of 4.5 months no sleep. I'm on a marathon, not a sprint and need to keep that in mind. Easier said then done.

The surgery also seems fine. Just a compounded frustration from the 4.5 months. The surgeons nurse called and checked in on me this week. Seems I'm recovering as I should and she reminded me I'm only 3 weeks in. She helped me finally find a way to keep the brace somewhat clean (sweaty life in a brace is gross), so that is positive. I've still got the steri-strips, so none the wiser yet one how epic the wound looks underneath. Given I've got the brace on for 6 weeks she said they might hang in there until I see the surgeon!

Pain is still a bother at night, but Paul and I made some more adjusments which have helped a little. This means I'm awake a lot. So its a game of numbers - head in to bed and bunker down for a long while to catch what you can. Since giving up the opiods and making Paul's adjustments I seem to do better with the length! My 8min sleeps are now 30-40mins, so that is a great improvement. The lack of sleep over such a long time means I'm pretty forgetful and generally fatigued. Often not realising someones messaged or called and forget it even happened so naturally I forget to return the contact. Many of you have noticed but have been kind enough to give me a leave pass haha So I won't be offended if you follow me up!

This week I had the dreaded return of the voicebox spasms and related cough and lungs weren't great. At the same time my achilles were flared up with SPS.

In the past, the ENT (I've had 4 opinions!) has said my voicebox 'laryngospasms' were likely a result of the multiple voicebox surgeries and the recuring growth I have. There is a decent one there still but we engaged the 4th opinion last Xmas to give his opinion on the likelihood of it being cancerous (the main reason I had to have the last 2 surgeries, beside voice quality and pain). He is a Voicebox Cancer guru. He agreed with me that it was extremely unlikely given we should know by now and that each surgery was a risk of never speaking again. So to manage with physio and speech therapy until I can't handle it any more. Which I do, and so far so good, pretty much soley thanks to physio.

These layngospasms feel like asthma attacks, as you loose all ability to speak, your eyes water (my left eye always crys the most!) and you can't catch a breath. They are kinda itchy and tickly as they contract and seize closed. Many of you have seen or heard them in action! I think the worst one I've had involved poor Ang - she was on one end of the phone and me on the other. They'd been helping me with my physio as I'd been super unwell, and had been having them in the practice. They always jumped into gear - raise the physio bed, get me room temp water to sip, venotlin etc. So when I had an episode on the phone whilst I was driving home and chatting to her it caused a bit of stress, more for her than me! I had to pull over, text Ang first to say I was ok and for her to hang in there until I kick back in haha

I've historically resorted to a lot of ventolin given the feeling of panic sets in. They taught me to try check my lung readings first to differentiate. These days I find 2 in 10 are genuine asthma, the remaining 8 are these spasms. So these days I find room temp water to sip and do the swallowing action a lot until it releases. My CF specialist (is in charge of all of respiratory at the Mater) had said they could also be related to the Brisbane grasses as there has been a surge in a different type of grass and escalation of patients with allergies and respiratory disease. Given I was having episodes every single day for a couple of years, she'd recommended the move to the beach. Thankfully I had only had 1 episode the whole time I lived at Caba (that was the butchers day back in the first post)!

I got to researching SPS and laryngospasms and it seems this can be an extension of the disease, and a dangerous part. SPS is thought to be triggered by touch, stress, cold, loud environments and changes in the environment. It is a neurological immune response to your environmental situation. The voicebox is a filter, after your nose and before the lungs...so perhaps these grass pollens are triggering them.

With this in mind and my achilles problem I decided to increase my baclofen to 20mg. 5mg with breakfast, 5mg with lunch and I'm doing 10mg with dinner as my neuro said it helps with sleep. My immunologist doesn't believe in coincidence, so I'm going with the positive mindset that it's worked. Both the voicebox spasms and achilles are sorted within 24 hours! Crazy. Now I just hope it doesn't trigger toxicity, but I feel confident I'll be ok on this level. I believe it was the 30-40mg range that tipped me over the edge! This experiement and my research has given me a great idea to table when I next talk to my new guru's and CF specialist as it seems there are some relievers that might help (not asthma based) and important to have on standby.

My lungs still aren't great, so perhaps they are genuinely just unhappy with Brisbane air at the moment. There's a fair bit of burn off going on. My watch alerts me multiple times a day about them, so I'll assume that's the cause there.

Key highlight this week was watching some Netflix with Hans. Carlos and the kids have gone to Sydney for Xmas before Hans joins them this weekend. I'd not felt like TV since Jen and Mick were in town. So it was good to be able to escape via a short series to then help wind down and lull me into a sleep.

Thanks you's go out to Lyndal for helping me get my plasma, Elise for helping me with reviewing my new NDIS application (whilst sick and exhausted herself), Jo for her uber vouchers to get me around, Paul for physio last Friday and again this arvo! And of course Hans and Carl for their home and friendship. In particular Hans getting me out of the house and sorted for Xmas. Not sure I've ever been Christmas ready this soon haha