I often say people with CF appreciate life more and people ask me what I mean by that, how do they appreciate it more? Well because we have to work so bloody hard for it! On Saturday I had to do my last dose of IVs, then work at my mums shop for a few hours, then go get my needle taken out, then get home and get a proper shower for the first time in 2 weeks. So yes that shower was amazing and I am sure I appreciated that shower alot more then anyone else appreciates a shower! Then I had to get ready and do my physio and nebuliser before going out. So yes I think I do think I appreciated that night out more than others, I haven't been out for three weeks, I've felt like crap and it felt so good to be partying!
I went to my cousins house party and it was a pirates and princesses party so naturally I dressed as a pirate! It was another friends birthday and she was in town so after midnight I rounded some people up and went into town to see her but I only saw her for a few minutes. After a few hours my friends wanted to go home so I went back to my cousins party. I mean can you believe that? I probably still had strong antibiotics in my system and drank rather alot, but I wasn't ready to call it a night yet! So yes I think I do make the most of things when I have the energy to do so! I'd just like to point out the idiot bouncer who thought it was extremely funny inspecting my firearm (I had a fake pirate gun), they really need to get out more!
Tell you what, I had a banging hangover on Sunday but it was nothing compared to how I felt on that first week of IVs! Ah the joys of a simple hangover...!
I had my flight test today. I explained what happens in a flight test in this blog entry so won't bother going through it again. My sats fell to 88%! This is not good, I was borderline at 90% last year so I have no idea what this means. I am guessing it means I might need oxygen even on a short haul flight that is less that 2 hours long. I am going to call the hospital tomorrow so that if I do need oxygen I have the documents to take with me on Wednesday to get the doctor to sign to get it sorted asap. I am not impressed, is this a sign my health is worsening?
I have received a letter through the post saying I need to start looking for a new car as my motability car will be getting replaced in September. No I do not get a FREE car as people always like to point out I do, 'oh it must be nice to get a free new car every three years', yeah well it must be nice to have a healthy body arsehole! I get money taken out of my benefits for the car, so it is not free atall, I think I lose about £50 a week in benefits to have the car, so no it's not free atall, it's not like my benefits make me a millionaire as it is. Plus alot of the cars, you have to pay an advancement fee, when you collect it. So yes I do feel lucky I live in a country where I can receive help with transport, but no it's not free and I'd much rather not have CF!!
I'll be quite sad to see my mini go, I can't afford another soft top car and I need something bigger really. I'll miss driving down the motorway with the roof down and my favourite tunes blasting out. There really is something great about going fast and wind isn't there? I imagine running might feel abit like that if you were a good runner, kind of like you are free and invincible, or riding fast on a horse! On the way back from the hospital today I went past my junction and carried on to the next then turned and came back just to stay on there abit longer because it's so good!
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6 comments:
It's brill to see your post being posative Gemma, although the flight test is a little worrying. Pics are great x
ahh so nice to hear youre feeling good!
hope things are okay with the oxygen, i know what you mean about teh question of whether your health is deteriorating more... but it is only a 2% difference to last time which doesn't seem to be too bad? i guess you just need to try to think of it as "another thing you need to do to keep well" rather than "another sign youre gettin worse" if you do have to use it. I have to have oxygen on flights over 1hour but i dont know what my numbers were on the test! i think my hosp were being over-cautious because i did hear the word borderline in there, hmm.
made me smile so much about going the extra bit in the car, its those littler moments taht can make life special i think, as well as "the big ones".
keep having those :D
You're gona need a new car soon anyway you can't get a baby seat in a convertable mini. Well you can but they get blinking heavy after a bit and having more doors makes it a bit easier. Listen to me I'm a right old git.
"Shiver me timbers, y'all be a foine bunch a land lubbers", etc...I wish my mates would do a pirate party so I could ham it up as a pirate ;-)
Good look with the flight test; I can't remember, I think it's 85% when you need O2? so I would have though you'd be OK for a short haul flight
Keep positive Gemma
Gemma, I think you need to dress as a pirate on a more regular basis.
As for iv's. I'm the same as you, pretty regular every few months. It sometimes feels like a two week lockdown when i'm on them. It's poo, but as you say, ultimately worth doing to keep the balloon blowers going.
p.s. Sorry for the numerous comments, i'm playing catch up.
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