I've been out of hospital now for 12 days so far and i would say that i am doing pretty well and i still feel okay :) I've also been feeling a lot more happier within myself as well. I've been getting out the house, and keeping myself busy when i can. I seem to have found a great mix of 'drugs' that help me stay comfortable whilst i'm out and also let me actually enjoy being outside and not stressing! I take 1.25 mls of oramorph which keeps my lungs free of pain and also calms my breathing down a lot, and a lorazopam for anxiety, and it really does help. I think half the battle before was if i was out and then started to get sore/breathless i'd start getting anxious or panic as i wasn't home where i should be when i'm 'sick'. So if i take a small bit or oramorph and lorazopam before heading out i seem to do just fine. As my breathing is better i'm in no pain and i'm not anxious about being away from home and out of my safety guard.
So what have i been up to i hear you ask? Well I've been making sure i get up dressed, and ready most days as even that itself makes you feel more human, I've been trying to get out as much as possible, taking my little brother to school and picking him up (even if i do just wait in the car) it's nice to see him running around with his nursery friends. We have had lovely weather here in Luton as have many other places, so i have taken advantage of this as best as i can, on Saturday me, my mum and little brother Cael went to Woburn Safari Park where you drive around in your car and get a close look at tigers/lions/zebras/giraffes/bears and monkeys, one monkey was comfortably sunbathing on top of a car roof for a good 5 minutes lol. And then they have a bit where you walk around and they have penguins, sea lions and lemurs .It was a great day out, i really enjoyed it. A few pics for you :)
Yesterday i popped into town to get my car washed by the lovely mall car park man lol. Whilst waiting i had a look around the shops and met up with my great friend Jodie, and had a cola float (Coca-Cola with ice cream) incase you didn't know, and then Our friend Uncle Deano come to meet us, but i didn't stay too long as stupid me forgot to take my oramorph and starting too feel a bit crappy! Wont forget that again. I do have a lovely clean car again though :)
Had a phone call from Papworth today, blood test has shown my crp has increased a little (inflammation markers) if it's high it means infection basically. But consultant wasn't too concerned as i have been off iv's for 12 days, he said he wants a repeat blood test in a week or 2, but as i'm doing so well i don't need to go in yay :) Still hoping to spend longer than 16 days at home, and plan to keep enjoying every moment while i can.
Now unfortunately for some bad news.
A fellow CF friend of mine Stuart Gailbraith, passed away Sunday morning. He was just over 2 years post transplant and had started to decline, he was a real nice chap, and was always asking how i was doing although he was going through a lot himself. He was a right character and into his garage music! We had plans to meet, but unfortunately now that wont happen until our worlds collide again. Breath easy Stu, will miss out chats <3