Wednesday, 28 October 2009

Spaced out.

I mentioned in the last post that I felt kind of edgy. I didn't like feeling like that and annoyingly I felt like that the next night to, cue people asking me to check my blood sugars. Seriously, if I end up with CFRD I may literally throw a massive tantrum. Anyway, I can't check them as I don't have a blood sugar monitory thing. I've got enough medical crap in the house as it is anyway.

It scared me feeling like that, b/c its just not like me. And it can honestly take a lot to scare me, CF wise. The last time I was most likely shit-scared was probably the whole 'pleurisy nightmare '09'. Which is easily justified b/c I was on the verge of suffocating at one point. And before that it was when my lung function had taken a 15-20% drop (luckily, after that I managed to increase the 55% all the way back up to 80+% on more than one occasion).

I hated feeling lost like that though. And both times it happened I was on my own and the house was quiet, so it sort of intensified the feeling. That, and the fact that I can get jumpy in the house at night when it's dark and your own shadow freaks you out. Weirdly enough I don't think I'd feel the same spacey/being on edge feelings if I got out the house. I want to go on another camera mission and just go mental taking pictures as that can always make me feel better. I might go somewhere next week, but I'm quite apprehensive about taking my Nikon out somewhere. With the amount of injuries I do to myself, I just hope it doesn't stretch to my camera (my phone, on the other hand, is an invincible little fuck, who luckily refuses to self destruct whenever I drop it).

My IVs finish tonight, and when I was coughing earlier, I realised it was one of those pointless coughs which means the IVs have definitely worked this time. Which is great, as I was starting to loose my faith in IVs! There's only so many times you can put up with them when they're not doing the job. And now I'm soon to ditch the port needle and can re-start swimming. It's the only thing that is gonna get my lung function back up when I can't run anymore. I never did find out what that stitch thing was, and I'm convinced its some sort of temperamental hernia. I'm honestly falling apart at the seams.

As swimming means getting out the house, which is incredibly appealing when I don't leave for much other than work or college, I can't wait to get started. It's been a seriously long time since I last took a dive into a pool that didn't include catapulting off a water slide. Speaking of college, when I went last Saturday, we started a new project (one project takes about 3-4 weeks). I went round Newcastle with two others, armed with a Nikon D40, from college, as I'd not brought my own camera with me. Which is lucky b/c it began to piss rain the second the teacher said 'go for a walk around Newcastle...'. All we had to do was choose a certain area and take pictures no further than a 5 minute walk in and around that area. We chose central station and got some good pictures around there, through some tunnels and around the Life centre. I know for a fact that if I'd not gone with the two other people I was with, I would have seriously lacked the motivation, as its just not fun to walk through 50 gallons on rain on your own. But with other people with you, it turns into a laugh, and before you know it, you've walked beyond a mile and not even noticed.

By the time I'd gotten back to college (drenched, but happy) I clicked through the camera and saw I'd taken about 50 photos. We only need 24 max, which means I can ditch the pics I'm not too happy with, which is good. There's always one or two pictures that aren't that good, but if its like last time, when we used film, you can't delete any pictures, and once you've taken them, and taken the film out, you can't go back. Being in the darkroom was insane, pitch black, and I did very little considering how useless I am when I can't hear people (Ok, so I could hear them, but I couldn't understand them. My hearing is so fucking confusing).

Blah. I've got nothing else to write. But for that last post, I'd barely written anything and then wrote something like 'Oh well, no news is good news' which seemed to trigger the edgy feeling. So nothing worth writing about may have happened, but I'm damned if I'm writing that phrase again.

Saturday, 24 October 2009

Not a hypochondriac, just clumsy.

Majority of IVs done, 4 days to go, and many more injuries acquired since I last blogged.

I am a walking injury.

Only I can manage to practically skin my knuckle when replacing an attachment of the hoover. And b/c of the fun-ness of IVs mean that you have to use heparin after each dose (the stuff that stops clots forming in the line/port/whatever) I bled for ages afterwards. B/c I'm a clear winner. Plus I almost chopped another finger off as I was designated the fun task of smashing melted candles to bits to remove them from the stupidly shaped vase they were in. When will people learn that I can practically render myself A+E bound with even the simplest tasks, so handing me a knife and a load of vases with melted candles stuck inside, is hardly the smartest thing for me to do.

As for IVs, this might actually be the fasted two week dose ever. It could be b/c since my last dose and before this one started, I was remembering what it was like to have a line in my hand or wrist, and I remembered what painful little bastards they were, and then when you get IVs in a port again, its odd b/c you don't feel IVs in a port. Unless you've just taken them out the fridge, and it feels like ice water going through your veins. Which happens to be quite nice on a hot day :)

I'm trying to remember if I've done much this week. Or, besides work and college, if I've done anything. Or left the house for anything. And I clearly have a tres boring life b/c I've realised that I haven't. Bright side, I'm going to my sister's Halloween party next week, I have the added joy of the flu jab sometime next week too (normal jab, not swine flu) and I get to see all my lovely friendies when I go to bonfire night on 7th November (yes, yes, I know bonfire night is actually the 5th, but the 7th is the nearest Saturday. So shush) and that night will see my friends attempt to get me into the one and only (and apparently incredibly crap) club in Hexham. I'd rather just be in the bar and get smashed, but hell, I'm seeing people I haven't seen in months. So bring it.

Ah. At the moment, I feel kinda on edge. Its hard to describe. I've done nothing to warrant feeling like this, but I don't feel what can be classified as 'normal'. I think I feel jumpy, in a way. It can't be IV side effects as they usually wear off long ago (i.e. after the first/second day IVs start) and even then its just tingly hands/drunk walking. Oddly enough I've continued to have the tingly hands and odd smacking-into-things moments usually for a few hours after my IVs but its not strong and I can usually control myself not to fall up the stairs more than necessary. Where was I? Oh yes, feeling jumpy. Meh, I've no idea what has caused this, but it'd an odd feeling which I hope goes away.

Hopefully it'll be solved by ice cream. And even if it's not, I'm still eating the rest of that tub of strawberry ice cream anyway.

Monday, 19 October 2009

It's a spatula thing.

Ok, so good news... Hopefully these IVs will actually just be for my usual 2 weeks rather than the 3 weeks, b/c at clinic I gained weight (as usual. Not as in put on a whole tonne, but gained a respectable amount, which I'm getting good at these days) and my PFTs are stable. I'm slightly worried that these 'stable' PFTs are staying in the mid-60's when I've had them in the 70's and 80's in the past year.

Hmm. But I'm still hell bent on improving them. My physio suggested I start swimming, which I'm going to. Unfortunately I have the craving to go swimming now, and with a port needle in, that's sort of out of the question. But the second I get it out, I'll hop on the bus and make a (probably knackering) walk to the pools. She suggested it as swimming is 'brilliant' for your lungs, and I admittedly haven't been in a while. I used to swim every Friday night, and now it's more or less just swimming in the pool when we go on holiday. But at least when I do get my port needle out and I do get my arse back to swimming, I won't be thrashing about like a new born seal, and I'll be making lengths in a kick ass way like I used to.

Even after I slipped on the edge of the pool and ended up with a scar on my chin. (And I still don't know what the hell happened that night to be honest).

Oh, I've just found out I can get free swimming at the local pool until I'm 19. Score.

I escaped work unscathed on Friday, and fell over at college on Saturday. I was picking up my pen that had escaped across the floor, twisted round and landed on my arse. Ow! Luckily there's no major injuries this week. I did fall up the stairs a few times whilst waiting for the side effects from colistin to wear off, but to be honest, its no more than on a usual day. These side effects seem to only be on the second day of starting my IVs, each time I've had colistin, which causes the oh-so-fun drunk walking. But the good thing is, these side effects are getting less and less with each time I have that antibiotic. Which is great b/c I get to reap the benefits of Colistin without feeling like crap anymore. Walking into things and having the slightest headache, I can deal with, especially as it goes away the next day. Having those side effects in three-fold on the first time I ever had IV colistin, not fun. But I still felt ridiculously better afterwards.

I wish I could say I've done something exciting, but I really haven't. I suppose the highlight was college, as I love it. Coming in a close second was getting the IVs. Which seems kinda sad, but I have no life. Haha. I like seeing the nurses and I quite enjoy the IV pole skating whilst waiting for my hours worth of IVs to go through, as I always get the first dose started at clinic, and it's always in the IV gravity bag things. Luckily at home its one syringe and one intimate thing.

For the Heparin flush, my hospital generally uses the brand that comes in a purple box which has an image of a hand with a canula in it. I've forgotten what the proper brand name for that stuff is, and we don't have any lying about in the house, as I can't use that stuff (I'm getting to it... hold your horses.) Anyhoo. As I said, I can't use this stuff as it causes the tinnitus in my ears to go really really loud, and I get a headache from it. Eventually, the hospital decided to change the brand just for me (as in, they go to more trouble when ordering my IVs and such to make sure I get the right brand of heparin, rather than just getting the usual generic stuff they give to everyone else) and now I use a brand called Canusal. This stuff does the same job (it prevents clots in a line or port) but without wicked headaches or louder ringing in my ears.

I'd put links to show what the brand/box of the different heparins look like, only google is tres unco-operative and doesn't actually have an image of either box.

Funnily enough, the company which sends me my IVs sent me the 'wrong' brand of heparin (I've no idea how they managed to cock that up considering its stressed on the order form which the nurse sends out) but it didn't matter much - we've always got extra stock piled from my last IVs that there's enough should there ever be a heparin emergency. Anyhow, so there was more than enough to last for a couple of days, before the delivery people sent round more canusal and picked up the other stuff.

I consider that quite funny, but then again, I'm weird like that sometimes.

Right, I'm off *waves spatula*

... yeah, a little inside joke for those UK CF forum peoples. I love them like that :)

Wednesday, 7 October 2009

T-minus 7 days...

I haven't done much other than vegetate in front of my laptop watching the DVDs I ordered the other day. They arrived the other morning when the post man sauntered up to the door, and I saw my two parcels literally fly through the letterbox. And then bounce along on the floor a bit too. I did actually say to the door/postman 'Dude! My DVDs!' But I don't think he gave a shit, and they were safely encased in the cases and the cardboard, so they survived to tell the tale.

And my bus pass came found it's way home :) It must have dropped out of my pocket at school on Thurs, as the school posted it back to me and it arrived on Monday. I was going spare without it. But now I can make any random and pointless trip to Newcastle or Consett or wherever the mood strikes, as I can now yet again, travel on the bus for FREE!! (From 9.30am to 11pm on a weekday, but whenever I like on a weekend!)

My three weeks of IVs are looming ever closer. I don't know whether I'm apprehensive about them (given the fact that they're the 2nd three weeks of IVs I've ever had) or excited. I can't explain the excited thing, but I think it's b/c I'm not feeling crappy right now, so I'm hoping these IVs put me on-top-of-the-world kind of 'feeling great'. That, and they get rid of my cough, which is the main reason for going on them. The highly ironic thing is that I'm going to a party yet again with IVs. My sister's Halloween party, but a party nonetheless. And I know and like people who are going to it, so it'll be fun. But the stupid thing is that I'm yet again on IVs when this party is planned for, and I don't get out much these days. Such is my life. But I'm betting my liver is glad that I'm being very teetotal at the moment. Not so much out of choice, but the few times I do go out and have the opportunity to have a drink, I'm on effing antibiotics. They seem to love me in that way.

I did go to the Freeman ENT on Tues as per my appointment and to be honest, it probably wasn't the best. Every time I go there, I have to take another hearing test and I hate doing them. Its hard to distinguish between the beeps from the test and the ringing in my ears, so its probably not the most 'sure thing' test. This time, apparently I have literally no hearing for the most half. Which confuses me as right now I can hear the TV and hear myself tapping on the keyboard. Albeit with hearing aids, but still, if you've got no hearing, no amount of HAs are going to help that. I did ask if there was anything they could do about the nerve damage - she said my only options are HAs or a cochlea implant, which I put my foot down against. I know some people like them but I just do not want a brick sticking out the side of my head. That, and the fact that surgery is kinda frowned upon with CFers - anaesthetic is nobodies friend, but it can cause major havoc in the lung department when you have a respiratory illness.

My attempt at getting newer or smaller HAs also bombed - she just doesn't see the point as she doesn't believe they will help. Which pisses me off as surely newer HAs (which aren't the size of bricks) would have better technology, right? (See previous post about how they said these HAs would make everything clearer, and they didn't...!). *Sigh* I hate my hearing, I've given up on it. And I'm sick and tired of getting pissed off, embarrassed or upset about it.

On a much happier, chipper and all around better note, I got an extra lens for my camera. When I bought the camera I got a few money off vouchers for other stuff, and I decided to get a 55-200mm lens. It cost a fair bit, but it comes from my grant, and I got £90 off it, so I thought I may as well go for it - whilst I probably won't need the lens this second, the voucher was only valid for 3 months. Now my camera bag really does look the part - I've got the camera, two lenses, a flash gun, a battery charger (ooh yes, I need to buy a spare battery) a spare memory card, and the USB lead. I've also kept the instructions and things in case I get a bit lost (which is fairly likely, knowing me). With the boxes for my camera and lens, and the box for my brand new laptop I bought myself (adding together my wages and left over money from the grant) my room is starting to look a bit like the store room for an electrical goods shop.

Also, you'd think after a whole lifetime of having to take enzymes every time I eat something, that they would be something I always have on me, whether it be in the car, in my pocket or in my bag. Um, no. On Tuesday, before we went to the ENT, I had a cheese and onion bake thing from Greggs. After finishing it and cracking open my coke, I rooted through my bag and started to look for my enzymes. After I couldn't find them, I looked up and said to my Dad, 'Do you want to know something really funny...' and he guessed I'd forgotten my enzymes. Its funny b/c he asked before we left the house if I had some, and I said I did. I was sure I did but I must have taken them out of my bag rather than put them in. I've said about 100 times we need to keep some enzymes in the car or something, as I'm always forgetting them when we go out and I eat something. We still haven't put any in the car though. Personally, I think we're just a family of procrastinators *looks pointedly at the list of 'things to do' which include getting my e-flow serviced and getting my DLA switched over to me now that I'm 18*

Oh and before I forget, b/c I find this funny, I was on the bus today, and it was one of those old and pretty much 'had it' busses, that are loud and shake the seats. I was in the back so my seat had a fair bit of shakin' and I instantly had a thought... 'Hey, free physio!' Heh. Not that I'm charged for physio b/c that would be barbaric but I found it funny all the same.

It's officially one week until my three weeks of IVs. Why, please tell, am I bricking it?!

Saturday, 3 October 2009

And no word of a lie.

At my shift at work on Friday, I ended the day with more injuries than I bargained for. Not that I actually expect to get injuries from hoovering and the like, but I can't honestly say I expected to come home limping and with a massive bruise on my head.

The bruise was from accidentally whacking my head off the corner of the sofa (which isn't soft). When I stood up I realised I was dizzy - and laughed at the fact that I've probably given myself concussion, b/c it's apparently just that funny. After that, probably only 10 minutes later, I walked into a fence (Ok, fell over it when trying to jump the little bugger) and now I have an impressive bruise on my right leg, thus, limping. And I know its painful as A, it's my leg, and my bruise, and B, I rarely ever bruise. I'm constantly walking into things, whacking my head off open cupboards and alternating between falling up and down the stairs, and rarely have a scratch to tell my tales of clumsy-ness.

But injuries aside, its not the only tale I have to tell today. The other day, I went up to school to ask if I could claim back (ok, more like 'rescue') my 3 art books of my work from my last school year. I was told I had to wait till November, which I wasn't pleased with, and wished I'd followed through with nicking the keys to the store room and just taking my art books. I got halfway through this plan when I realised the door was open, so I left the keys on a table and headed straight for the door, thinking 'finally, things are going my way!'. Um, no. I turned around to check no one else was there, and lo and behold, the art teacher was walking up the corridor. I legged it around the corner and hid, b/c I knew that if she saw me, she'd know I was after my art stuff and probably guard the door like a trusty Doberman. So I waited until she'd left (incidentally, she was actually going into the art store room, hence the open door) and unfortunately, locked the door behind her and took the keys I'd ditched on a nearby table (Dammit!). Giving up, I followed her and pleaded for my art stuff, and this was when I had a (light hearted) argument about wanting to take my art stuff before people destroy it, as someone had already pretty much wrecked one of my final pieces by bending it in half, and to hell with what the Exam board wants - I couldn't care less and I just really really want my work that I spent months slaving over, home, before someone really does destroy it.

I went off empty handed and after a whole explosion of UCAS college application stuff, I was able to get home. Unfortunately it wasn't that straight forward, as I realised, after going through my bag and my pockets at least 5 times, I'd lost my bus pass. I figured it must have dropped out of my pocket at some point when I was carrying my coat, and retraced my steps. I didn't find it, and just as I was thinking about scrounging a lift off my old school bus, I saw that it had already left. I remembered I still had a £20 gift card for a jewellery store that is in Hexham, and decided to make a detour on my walk back to the bus station. I got another charm for my Pandora bracelet, and now it's looking pretty full :) Actually, I think I'll take a picture of it b/c I think it really is the bee's knees.
Anyhoo, reluctantly realising I'm going to have to pay for the bus for the first time in more than a year, I went up to the bus stop and checked the timetable. The next bus that went past my house wasn't until 5.15pm. It was 3.45 at this point. A tad pissed, I texted my Dad asking him to pick me up, and walked up to my sister's house. I didn't mind this part as I like going to my sister's though. I think the one thing that annoyed me (more than the lack of art stuff, or loosing my bus pass) was the fact that I'd walked all the way from the bus stop, up to school (which is probably about a 25 minute walk by my standards) and then having to walk from one building to the other a few times, as QEHS is two buildings. Then having to walk all the way back to the bus stop, and then finding out the bus wasn't turning up for more than an hour, and having to walk a further 5-10 minutes to my sister's house. Bear in mind I'm not in tip top condition. I think the right word here is probably 'crap'. Tip-crap condition, if you will.

So, after murdering my lungs with all this walking, huffing and puffing and inward screaming from the frustration, I finally got home safe and sound, and my Dad was fairly tickled at the fact that I lost my bus pass. And then I realised I needed it to get the bus to college on Saturday for my course. I like having my bus pass b/c it means I don't have to talk to the bus driver and embarrass myself with crappy hearing moments, as I often do. With my bus pass, I avoid this b/c all I have to do is show the pass and I get my ticket, and I don't have to say a word, which probably suits many people quite fine.

My college course started today. And whilst the course itself was good, and I love the fact that we jump right into work as opposed to pissing about watching slideshows and such for weeks on end, the start of the day was pretty crap. After realising that the bus I was on was actually taking longer than I realised to get to college, it took a different turn and completely avoided the college. I ended up at the Eldon square shopping centre, which is about 30 mins walk from the college. It was now 10.15am, and my course started at 10am. Damn. The next bus that went anywhere near the college wasn't for another 20 mins and the dude at the information desk said I was better off walking there. So I set off. And it began pissing rain. After getting lost about 5 times, getting soaked through to the skin and getting progressively upset through the whole being wet/lost/completely out of breath thing, I finally found the college, and walked into my course 1 hour late. I didn't get any flack for this though, as I explained the whole bus cock up and anyway, all I'd missed was the tour (and the introduction bit), but it wasn't a bad thing as I'd technically already been there before.

So, the course was good, getting soaked wasn't as good, but right now I'm watching good TV, chatting on msn and have a tub of strawberry ice cream, so things could be worse.

And that was my last couple of days. No word of a lie.

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...