Monday, 30 July 2012

Turning old

In four days, and counting.

I wish I could say that hitting the big ol' 21 would mean that people will stop poking my nose and my dimples, but I seriously doubt it, due to sod's law deciding to keep me stuck looking like I'm actually 12 and not in fact, 21. And no matter how many times people tell me I'll be grateful when I'm older and still get ID'd and get to act all flattered, at the moment, its SO annoying to have people stare at me incredulously because I'm the one sitting in the drivers seat of the car. Or maybe that's because they're a huge hypocrite who are giving me looks for parking in a disabled space with a valid disabled badge, whilst they're in the space next to me without a badge in sight.

I started IVs on Wednesday after phoning up on Monday to demand drugs, and they've already started to work considering I'm now managing sleep inbetween coughing fits, which are getting lesser by the day, win! Well, mostly, if you ignore the numb face and feeling like I'm high half the time, thanks colistin. Starting IVs was fairly uneventful, just sitting in a room slowly getting through several cups of tea courtesy of my lovely nurse, and a hell of a lot of boredom. I was even too bored to drip stand skate.

Now just to make sure they fully kick in within the two weeks to avoid a third week, and then, in the words of my nurse, I can drink for three reasons; one for my birthday, two because its her birthday soon too, and three, celebrating finishing IVs. I do like her style...

Monday, 23 July 2012

More IVs, and hospital vs home

It's quite typical; for the last two years I refused to take cipro on the grounds that it just didn't seem to work for me anymore. I think I'd taken it so often that its effects were just getting lesser by the dose. It got to the point where I was loosing my appetite and following those retarded 'no milk two hours before or after each dose' rules for absolutely no reason. So this time, when I had a fortnight of it, it surprised me that it seemed to be working. Yeah, I lost my appetite, more badly than I have in a long time; I was barely eating, two bites and I'd be full, and staring at a full plate getting frustrated at myself because of how much I really, really wanted to eat, but just couldn't seem to manage it.

And then...

Yeah I caught a cold. Fuck sake. Not only did it make me feel like shit, but it's done a number on my chest that even the remaining week of cipro couldn't fix. So now I'm left with no sleep, the worst cough I've had in a long time, no appetite, and gradually pissing off anyone who keeps getting woken up by my 5am coughing fits. I'd have more sympathy for them if I wasn't so knackered. Because I don't want to spent what should be summer feeling like crap and coughing till I'm blue in the face, I've asked for IVs. It's a month since I finished my last ones, which is a shade annoying, as I wanted to be able to last till my next check up on the 17th august. There is no way that's happening. This means that I'm going to be IV'd up for my 21st, possibly a friend's 21st party, and most likely for the duration of the little bit of sun the has peeked out on the occasional day or two, but fuck it, IVs on a whole don't annoy me. The things that do annoy me are more along the lines of the uber awkward showers (hate baths, I cannot sit still so the idea of having a relaxing bath and doing nothing is just insane to me) and the slicing of my hands when making up the heparin syringes (cos whilst my hospital recognises that I'm lazy enough to need my IVs sent already made up, they don't send me the heparin and saline already made up too. Hard life...) But all that is way better than dealing with the cough from hell and zero energy. Tingly fingers and drunkeness from colo isn't too bad, and the majority of people I know have seen me do IVs so I don't even have to leave to do them in a group anymore, or cover up the ever sexy tagaderm covering the needle, cos they all know what it is.

The main thing for me is doing IVs at home. I know plenty of people who go into hospital for all of, or at least the majority of their IV courses. To me it seems insane; at home I've got my own bed, decent food, good tv, endless (nice!) cups of tea and the ability to leave and go somewhere whenever I want, energy permitting. In hospital, providing that the ward isn't too full and you manage to claim one of the 6 CF unit rooms, you've got freeview tv, and plenty of tea, even if its hospital tea in a cup that's empty after one big gulp. The food is okay, they've definitely improved the CF menu rather than making us choose from the truely disgusting normal one, but it doesn't change the fact that you're constantly being annoyed by the shit view of buildings, various nurses/physios/drs coming in all the time, insane boredom, having to pay for the internet, and the guilt that people have to drive 30 mins and pay the shocking prices of the multistory car park just to see you for a couple of hours. Also, whenever I've been admitted, they like to give you your independence by letting you do your own IVs (which they also appreciate if they're busy or understaffed). This is not appreciated by me when they come in at 6am in the sodding morning, and expect you to be awake enough not to miss your port line and accidentally stab yourself in the hand with a syringe, or knock everything off the table and decorate the floor. This is why home IVs are better for me. I change the times so the earliest dose is 8am, 10 at the latest, and because it's only two doses a day the other one is done 12 hours later. If I really can't do my morning ones, this is where my lovely parental units come in and do it for me, which helps the whole 'rest' thing people like to have whilst on IVs (and probably why they like to go into hospital, providing they don't have to go through the whole 6am nonsense themselves). The only reason I ever go in is because they have something I don't have at home, say, when I need oxygen. On a whole, it's always home IVs for me (mostly) plus with the few CF beds they have on my ward, I'm sure they're grateful too.

In short, bring on the drugs! And just hope I don't catch yet another cold, which I seem to have developed a talent of whenever I'm on antibiotics.

Wednesday, 4 July 2012

Spain :) And other things

Spain was immense! We did so much, literally didn't spend any time just lying around on the beach all day - what's the point in spending all that money if you're just going to lie about doing nothing? We went Jet skiing, walking every day, found an amazing hidden quiet bar with beautiful views, went to Barcelona, saw fireworks, went Go Karting, rented a boat, went to a marine/water park... and still got a tan! Ok, so I didn't go really brown. My freckles doubled within a day and I tanned my shoulders. And burnt an ear, not sure how I managed that one... plus anyone who knows me knows I wear several bracelets on my right wrist, and don't take them off, so I've got a ridiculous tan line from that, but at least I can see that I did actually tan a bit!

I took about 1200 photos... (200 of which are on facebook, don't make me add more!) and that's even without taking photos of all the water-involved things, seeing as my camera isn't waterproof and I sort of prize it beyond, well, anything. Shame though, I could have gotten some cracking shots from the jet ski and our little paddle boat. The food at the hotel was nice too - it was full board, so we had the majority of our meals there unless we were out, and it was a buffet so there was always something you'd like. We're going to ignore the slight hitch I had with the drinks machine on the first morning at breakfast - I didn't see the milk button on the first machine when I made my tea, so used the second one. Which turned out to either be butter or banana milkshake. Suffice to say I didn't drink that one. After putting sweetener on my cornflakes I almost gave up, but other than that, it was all good :)

I even remembered to do my nebs everyday, which I'm pleased about. I sat on the little balcony so i didn't set off the smoke alarm, and I'm sure if anyone looked over they would have been confused as hell. The only thing I found is that in Spain, maybe it's the language barrier, people talk less to random people in case they don't understand, but here, when I cough, I usually get random comments about it. In Spain, I just got looks, constantly. A bit rude really, not like I can help it. I was walking every day which was good exercise, I'm always pleased when my legs tire quicker than my lungs as that has to be a good sign.

Unfortunately it didn't really last - 3 weeks off IVs and I'm already coughing a lot - I know I cough during the night, and everyone is aware of it. But it must be worse seeing as everyone is saying how I'm coughing a lot in the night lately. I hate it, I can get a full 12 hours sleep and still wake up looking shattered cos I was actually up half the night coughing anyway. It's enough to drive you mad, its annoying, exhausting, frustrating... I kinda hoped that the feeling well thing after 3 weeks of IVs would actually last a bit longer than the length of IVs themselves. I go to clinic on Friday, and I'm so tired of IVs and not having them work. It feels like the start of an infection, and for the first time in forever, I'm actually considering asking for cipro. Am I mad? It's been years since I had it, and my complaint was always that whilst it seemed to increase my LF whilst I was on it, it would always go back to what it originally was as soon as it was out of my system. I've considered that maybe it actually will work though. Hopefully. There's a chance it might actually do something seeing as I haven't taken in it years, and if it just knocked this on the head, then that's enough to avoid IVs for Graduation on the 10th, and if I push my luck, my birthday at the beginning of next month. It's worth a shot, right? Worst is that it does nothing and I need IVs anyway, and I usually do eventually. My little lungies just love the drugs too much!

Oh and I got my letter confirming that I've passed my degree, earning myself a Merit, which is a 2.1 :D Sooo much better than I thought I'd get, as my tutor spent the last year telling me that my work is merit level, a distinction if I push myself, and yet kinda kept giving me crappy marks. I'm not sure if thats cos my work wasn't what he expected, or cos I ended up choosing the not-my-best shots for my final images for each project, or cos he thought it would egg me on to try harder (didn't work, generally, I just got pissed off). But either way, I'm so pleased! Plus, with the final show exhibition we had at college, I had three prints for my work, one was A1, the other two were sort of half way between A2 and A3, and they were all framed. I got 69% for this, which was another merit - my tutor felt that I'd rushed myself, and if I'd spent more time developing them (i.e. more time murdering the 5x4 film camera in the studio, no thank you...) I would have gotten a higher mark, hence why I was 1% off a distinction. His actual complaint was that during my test shots, I had a white background, and he felt it was a bit plain, so advised me to try a textured background. I found some crafty style off white tissue paper that seemed to fit what he was asking me to find, and did my final shoot with that. Once I'd had my film developed (and as it's 5x4, it has to be taken to a specific place that develops that film as its much less used, its very time consuming) and scanned and printed them, I was quite happy with the background - in my test shots, the white background looked nice, but it was a lot of blank space. So I preferred the textured background. In my final tutorial, my tutor said that I should have spent more time developing and then deciding that a plain white background would look better, as the texture distracted the focus. That's his opinion, and it's his opinion that I didn't get that extra percent I needed for that distinction, despite that the textured background was actually his suggestion anyway. Either way, it doesn't actually bother me - I passed, with a VERY nice result, and someone is actually interested in buying the three prints from said exhibition anyway.  Boom.





Don't think there's much else to say, it was pretty much all Spain, college, and the shit state of my chest. I'll eventually upload a few Spain pics, but that would involve sorting through the several hundred which I, to put it bluntly, can't be arsed to do right now!

:)

Clumsy adventures

You'd think most of us with CF would have already had our fair share of hospitals, and would generally avoid the place like the plague o...