Tuesday, 29 October 2013

From the other side.

People love to judge those on benefits. If there's nothing visibly wrong with you, you're branded a scrounger, and people look down their noses at you. Park in a disabled bay and get out without a wheelchair or massive limp, and you're stared and tutted at. It doesn't help with all the programmes on tv lately where it shows people on various benefits, proud of what they get from the government rather than working to earn a decent wage. And tonnes of newspaper articles that show families being given more than enough to live on, and being given huge houses with several bedrooms, and enough money to buy their children designer brands. And you also get the benefit frauds who lie about illnesses and injuries in order to get disability benefits just because they don't want to work. This all means that people with real illnesses, especially the 'invisible' kind, in which CF largely is, severely struggle to get what they deserve. 

Even before the new guidelines with the change from DLA to PIP, it was (and still can be with other benefits such as ESA) incredibly difficult to fill out the forms in a way that showed just how bad your illness can restrict you at times. I know several people who would qualify for either ESA, higher rate DLA (or both, really) and either haven't applied because they're worried the stress that they'd go through trying claim what they need, or have been refused the rate they do qualify for, purely because the people who decide are heavily uneducated in our illness(es).

Many people with CF have been told they're fit to work and don't qualify for benefits, because we don't 'look ill'. You don't see the effort it takes to get up in the morning, after a night full of coughing fits. You don't see how long we spend taking tablets, doing nebulisers, taking inhalers and doing physio every day, just to try and stay stable. All the painkillers and paracetamol taken for various headaches, temperatures and joint and lung pain. The supplements taken to try and gain enough weight due to our high dietary requirements. You don't see the time spent in hospitals for appointments and admissions, and the various clinical tests we have to undertake just so the hospital can monitor our health. The medication and equipment we drag around all day. The IV and oral antibiotics we take, antisickness, painkillers, vitamins, enzymes, various other meds for things such as reflux, liver disease, bone thinning, CF related arthritis etc. And on top of all that for some, insulin, overnight feeding or supplementary oxygen.

On a bad day, I can hardly get out of bed. Barely enough energy to get to the bathroom two doors down. Having parents, sisters or my long suffering yet never complaining boyfriend bring up medication, cups of tea and food, because I know that I just can't face going down stairs and then all the way back up again. Or even when I'm in hospital and attached to drips and oxygen, with back pain, temperatures and O2 headaches that feel like someone is trying to crack open your head with a meat cleaver. But once I'm back out of hospital, you don't see all that. I'm not perfectly healthy. I never was and never will be. At the moment, I'm obviously too well to need to consider transplant, but I'm too ill to be able to be a normal 22 year old, and definitely too ill to work. My lung function in the past year has repeatedly jumped between 35% and 60%. I get out of breath walking ridiculous distances and usually have to get carried up a flight of stairs if there's too many or there's no alternative. I use wheelchairs when I can't face walking around, like in shopping centres. My back hurts when I walk, when I stand around or when I cough when standing to the point where I have to sit down. I don't need oxygen much but have been admitted for it twice in the last year, out of three admissions. I'm on IVs every 2 weeks to 3 months, for either 2 or 3 weeks at a time, and we've started to add a third antibiotic in instead of just the two. And on top of all that, my hearing is fucked beyond repair to where I rely almost totally on lipreading. I can't understand anyone without it, I can't hear a thing without my hearing aids, this is all due to a mixture of hearing loss and nerve damage from antibiotics that I know I wouldn't be here without. I can't hear on the phone, I can't watch tv without subtitles, and I can't understand people without them speaking clearly and not mumbling. I even struggle to understand some of my closest friends and family because my hearing is that messed up.

But if you look at me now, you don't see any of that. If you sit in front of me and ask a couple of run of the mill questions that probably have nothing to do with my illness or disability, you'd never know how much time I spend trying to stay well, you'd never know how housebound I really will be if you took away my mobility car. It's actually ridiculous to say that you can only qualify for higher rate mobility of PIP if you can't walk 20 metres. If you asked me to walk 20 metres up a hill, up some stairs, or on my worst day, a flat surface, I wouldn't reach the finishing point. If you asked me to walk 20 metres with a load of food shopping, I would genuinely struggle and probably not get to the point without someone helping. If you took away my car, I'd rely solely on people driving me. I wouldn't be able to get the bus, because whilst the bus stop is at the bottom of my street, you still have to remember that the nearest bus stop to your destination is still usually a ridiculous distance away. The nearest one to my hospital is at the bottom of a hill, where if I walk it, even feeling well, I have to stop and sit several times.

But again, ask me to fill in a vague form, or an unfairly judged medical by someone who doesn't know what cystic fibrosis is, then they'd take away my benefits without a second glance. They'd tell me I'm fit to work and I should toddle off to find a job. I'd love to work if I could. But there's a lot of irony in taking away my main source of travel and then telling me to go get a job, illness aside. 

Plus, I do really feel for those who try and help us get what we need. Our CF social worker has told me he has his work cut out when the changes come to our area, when they reassess those on DLA and change us to PIP, because he'll be helping us fill in the forms and answer any questions and try and stop us from stressing over it all.

DLA and ESA are hard enough to apply for, but these new rules mean that hardly anyone will qualify for the higher rates. Yet bankers and politicians will sit in their massive houses with their big fat salaries and bonuses. Because I'm sure they really need them. They've never known what it's like to live on this side.

Thursday, 17 October 2013

Trials and (BUPA) tribulations

The lastest is... I'm on IVs. As if that's news. I never seem to be off them lately. That said, the sight of a gripper needle and the first lot being drawn up was pretty damn satisfying, after needing these ones for a few weeks, and having to wait.

I don't usually wait - my team are very quick on the ball. If you phone up feeling shit, they can usually get you a quick appointment with the dr that day (if its early) or within the next two. And if you really, really need to start IVs, and can't wait, they're happy to start them there and then, just so you don't have to wait even longer. The difference this time, is that I wanted to go on a medical trial. I don't know how much I'm allowed to say about it (I am allowed to say I'm on the trial and such, I think its more specific things such as whether or not I believe I'm taking the actual drug, the placebo, or if I think I feel good/crap because of it) so I will have to watch what I say, we can't be narking off the powers that be.

So. I'm on the Kalydeco/vx-809 drug trial, stage 3, for DDF508. It's a double blind trial, so neither me, the drs or any of the nurses in clinical research know whether I have the actual drug or the placebo. The trial is 6 months long (providing nothing stops it prematurely) and I think after that, the next steps are the big ones. Providing all goes smoothly and the drug is as successful as they hope, I think the next move is to get it approved through the NHS to become available to other patients. And that would be pretttttty damn cool. That said, it is a rather important drug and there's a couple of rules to follow which have been a big adjustment for me. Some might find it easy (especially those with big appetites or ones who don't suffer many losses of appetites and the like) but you have to have 20g of fat with the tablets. That's morning and night, 12 hours apart (well, I've put mine at 10am and 9pm. I can't eat loads at 10pm and then go to sleep soon after. That resulted in a fairly colourful chucking up situation). The tablets are pretty colours though, BONUS! Pink and blue :D I'm so bored of most of my tablets being boring white. Can't the pharmacy even try and make it fun?

The 20g of fat thing is a varied slope for me - when I first started, in massive need of IVs, I had no appetite and was really struggling. It wasn't helped that I had no energy at all and a bitch of a cough that sounded like it was shifting cement and was 24/7 making me feel constantly sick. I started IVs 4 days into starting the trial, so to be fair, I don't think I can even tell myself whether or not I have the real or placebo drugs. By the time I would expect the drugs to start kicking in, the IVs will start to kick in. But with the state of my chest in the first place, I couldn't have put the IVs off - I was told I had to be 'well' for 4 weeks. I thought that meant four weeks at any time. This actually meant staying well and staying off all IVs and orals that wouldn't be in your usual daily routine (say, Cipro) for four weeks right up until the start date of the trial. I'd needed IVs for a couple of weeks before actually, so the state my chest got in was awful, and my dr even said I could say sod the trial and just start IVs. I decided to wait (at that point it was less than another week till I could start them) as I'd already been through several tests (hardly intensive but I did have some fun with a potentially collapsed vein and incredibly painful blood test, which isn't normal for me) and the most fun of the lot had to be the eye test that made me semi blind for half a day, but it did mean I scored a free taxi home courtesy of the research dept. That taxi bill was a tad higher than it should be after the sat nav got the bloke lost and it took nearly double the time to get home.

Eating enough for the tablets can be a struggle - who wants to eat that much fat for breakfast? Yes, I do get up at 10am, so its my breakfast, not a morning snack. I'm lazy, but I don't really give a shit. At least its not later. I've managed to sort it with porridge (with jersey milk) and a pro cal shot, which is 100calories and 10g of fat in a 30ml shot. Its essentially a milkshake. Tastes a bit like scandishake I think, but you can down this in one (or two, its hardly water) but it also gives me half the fat intake I need, which has taken half the pressure off, and leaves me with my porridge in the morning, and various stuff in late evening, say a handful of biscuits, a stack of pringles, chocolate bars, home made smoothies and hot chocolates, etc. I do worry about when my appetite tanks again (its increased since IVs started, but I'm mostly thanking that to the antisickness I fluttered my eyelashes for, ha) but I'm hoping the cocktail of drugs I'm having will help keep me feeling better for longer. I have the same I had in hospital in august, minus one dose less a day of colo and ceftaz (so those are twice a day, and aztreonam is three times) but that's only cause stronger doses of ceftaz makes the polyps in my nose pop when I cough and the nose bleeds take the piss. The amount of times that happened in hospital and drs came in asking if I'd had any head injuries. Really. 

The trial isn't really anything exciting. I think they're doing the same one in various other parts of the country, but I don't know where and how many people are in it. Possibly America too. I know the company doing this is American cos the research dept were sent a fancy lung function machine. The values are different to what I get in my usual clinic lung function, probably cos its set with American values, and they seem to give lower numbers. I needed 40% minimum lung function to get onto the trial, and with the fancy machine, I got 40 on the dot. Even though it had been a fair bit higher in clinic. That said, my clinic numbers started to mirror those ones in my appointment before I started IVs. I'm trying not to worry about them, its just the exacerbation I clearly had in the summer did me in and took half of what I had, so its really hard to get it back. Going from  60% to just over 30% in a matter of weeks really hits hard and you feel it for a while. Annoyingly, it doesn't go back up that quickly. The days in the research departments are thankfully fairly sparse and far between - I've had two so far, but that included the first initial test day to see if I could qualify. The first dose day did take 9 hours though, I really wasn't impressed at having to get up at 7am in order to get ready and drive down to the hospital early enough to get a disabled space (therefore no paying, lucky really, I wasn't paying 9 hours worth of the bloody multistory!) luckily the other days won't be as long, as the pharmacy will actually have the drugs ready, rather than not having them until nearly 12 in the afternoon, several hours after we'd gotten there. I've got the date for day 15, and I think there's maybe 5 or 6 other visits over the next 6 months, and a couple of phone calls where I get to do those really fun peeing on a stick pregnancy tests; they'd really prefer you not to have a sprog during the trial.

All that aside, I've even had loads of fun with BUPA and their deliveries of my IVs. My first delivery wasn't even sent through - it never arrived, obviously, and I missed two doses. My second one came at 9.30 at night the next day, just as I was about to give up hope and start drawing up my own from the stuff I'd been given from the hospital that morning. And then I had another delivery today, of what I'm assuming is just over a weeks worth, and then I have ANOTHER BLOOD DELIVERY on the 23rd. I'm so sick of them. I don't usually use them, it's only cause my hospital pharmacy is having the yearly checks to make sure everything is working okay (or something, I didn't listen properly). I swear though, bad timing. It was only 2 weeks the pharmacy was going to be out of commission for IVs and certain other things. Of course I needed IVs then didn't I....

Saturday, 21 September 2013

New issues.

As if I needed anything else going on. I have a new problem. I don't even know exactly what it is, but I keep trying to put it into words and talk to family/close friends about it in the hope that talking about it would elevate the apparent massive weight I seem to be holding over myself, but so far I haven't noticed a difference.

I seem to be having some issues with swallowing food. I don't know where it's come from. I lost my appetite back in july just before my admission, and I felt sick all the time then, but I think it was from constant coughing so I just went off food. This time, my appetite has taken a hit (I'm fairly sure I've got another infection but the gremlins in my chest keep changing back and forth every day so it's hard to tell from that alone, although I think I do need IVs and it'd be wonderful if that was the ultimate fix for all) and I'm not eating as much as I usually do. Highly irritating, I love food, if I have food I really like, I'll happily eat as much as I can or until I've scraped the plate clean, and probably still have room for a few cheeky snacks in a bid to add up those calories.

At the moment, I can't even finish one meal. I can hardly get round that first mouthful. The main problem seems to be that I feel sick with food in my mouth, and actually swallowing the food is a massive struggle. Worse if its food you have to chew cos I put it off so long it just seems even more impossible to swallow it. But the odd thing is, once I've swallowed the food I'm fine. But it happens again with each mouthful. It's so frustrating. I'm hungry, I want my food, I want to gain weight. Jeans I wear every day are starting to hang off me and I'm so scared. I can't lose any more weight without probably being forced into having NG or a new button - its already been brought it a multitude of times before, when my weight was more than it is now, simply because even when my appetite is amazing, I still don't gain anything.

I think the threat of another button is sitting deep in my mind, along with worries of my chest, and that this loss of weight and any further loss is going to help nothing. After suffering a massive drop in july/august, I wanted my lung function back up to my highest numbers and knew that a big part of this would be weight related. I'm more than a stone and a half away from a good healthy weight, and it seems like such an unattainable target. I'm happy with every pound or tiny morsel I put on, and know it all contributes. I'd give anything to be a good 10kg heavier than I am now. Last time I was weighed I was 40kg, scares the shit out of me.

It's odd, its not like an eating disorder, its not like im physically trying to stop myself eating or lose weight. I hate that I'm thin, I hate that I'm getting tired doing nothing and that you can see my ribs, my shoulders stick out horribly and its goddamn impossible to find a pair of jeans that fit. I went through so many shops the other week, trying on various size 6's just to find what size I am so I know. In next, you could have fit a fucking watermelon in the jeans along with me. In a petite size 6. Why can't all shops just use the same fucking sizes?!

I'm getting scared and worrying myself too much, I know this. It would be so easy to switch off my brain. I try to distract myself with tv or whatever when a meal is in front of me in the hope that I don't realise I'm swallowing food. People say, well just don't think about it, don't think about what's getting you scared. If I could do that, Im sure I wouldn't have half of these problems. I get upset that I can't finish a meal. I can hardly eat half of it. I'm getting upset and angry at myself, whilst everyone else is trying to be nice and look after me, saying well done for eating half of that, as opposed to saying, there's still half left on the plate. I feel like I'm letting everyone down cos I don't know what's wrong with me and I don't know how to stop it. I don't understand how something I've done every day for my entire life has suddenly become the most difficult thing to do. I just want someone to tell me what this is and give me a magic fix so I can enjoy my food again. I spend all day worrying over meals. It takes me so long to finish one and finally stop stressing over it, that it's then time for the next one. In the rare times I've got nothing in front of me and no meal to worry about for a couple of hours, I can almost feel normal again, but it all comes back once I'm back in front of a fucking plate.

We're phoning the hospital on monday, most likely aiming for the dietitian. Although I can't imagine them being sweetness and light about it - dietitians have a horrible ability to not understand, even less than the average human. You can eat a 3 course meal in front of them, lick the plates clean, and they'd still be convinced you're not eating enough and you need to do more. She'll probably suggest more supplements to start. They're horrible. I feel so full with one that it's hard to time them. You can't have them when you're full, you feel sick, and it lasts for ages. You can't have one before a meal, you're too full for your food. I just need a fairy godmother to fix this stupid swallowing mental block I have. And then I can get back to normal.

Friday, 13 September 2013

Trying to grow up

I do say 'trying'. Me and my boyfriend are currently trying to look at the idea of living together. I've tried to in a multitude of ways over the last year with different people - my sister and my best friend. The main problem that came along here was money. And its the same problem that comes up this time too.

How on EARTH are you meant to live on next to nothing?! Looking at everything that goes in compared to what goes out, money wise, I'm fairly sure we'd be left with nothing. And I'm a bit grumpy that after everything it took to get ESA (but miraculously getting it without a medical or assessment hassles) I'd probably lose that. Did you know that if you live with a partner who earns over 20 quid a week, whatever they earn is taken off your ESA? Cheers government. DLA doesn't go far. My ESA will be 0, I have no idea if he'd get carer's allowance or if we should swap from ESA to income support (Is there an income cap like on ESA for this? I've looked everywhere and cannot find a thing) I'm incredibly confused about council tax, and council tax benefit. It's the only thing I couldn't factor in when trying to do the sums, but apparently it's a nasty amount and with everything, I don't think we'd have much left at the end of the month, yet alone week, and if it was more money going out, then fuck it. I give up.

We spent a large chunk of last Tuesday going between the benefit adviser and the jobcentre (and the condescending twat of a woman who worked there deserves a slap for the way she spoke to me, yet spoke normally to John) and my sister also rang my social worker today to find out a few things. I'm meeting him at the beginning of next month, but it looks like some info I've been given is wrong, which is confusing the fuck out of me. Like with the earning over £20 on ESA rule, apparently that's more down to hours too and I'd lose it despite the fact he works under the necessary 24 a week. So hopefully this will be clarified with everyone by the 4th.

I want so badly to move out. People probably think I'm mad, why move out and pay your bills etc when you live at home. At the moment, I'm sharing a cramped room with my 26 year old sister, and I currently buy most of my own food and do my own washing and tidying up anyway. I half live at Johns, I half live at home. I have no space to call my own that isn't my fucking car, I have nowhere to go for peace and quiet. I never cook because everyone deems it necessary to congregate into the kitchen and then people have to pick on what you're doing. And I'm admittedly a bit of a neat freak. The rest of my family aren't. If you're a tidy person who lives with a messy person, imagine the stress I go through every day with stuff I'm either too tired to put away, have nowhere to put things, or its stuff you're not allowed to move (i.e. the kitchen table which is covered with various papers and work sheets. These all go in the bin when tidied by my mother, but I'm not allowed as I'd throw out that one important thing.) My 13 year old sister is a bit (ha, a bit...) of a professional room destroyer with all her shit too.

Even if I did get a place in the town I want, I wouldn't go out much (I don't any way) but probably even less so seeing as one of my best friends who lives there has managed to get herself a job in north yorkshire and will be moving there. I'm happy for her but will miss her a tonne load. I almost feel like I'm begrudging people who move away, because I don't think I really could. I rely on people too much, mostly for my hearing, but I could never just move away, even if I stayed close enough to the hospital, and just start on my own. I'd trip down the stairs or over my own feet before the first evening for a start.

The rambles of a girl, right. I'm just blabbering now. Probably because I don't know who to say this to. I can't say it to her, it's horrible and selfish. She doesn't read this (as far as I'm aware, only cfers and the like read this and when it's posted to facebook its hidden from people who I'm not ready for them to read... despite having this for probably 5 years now). so I do feel like I can write a bit more freely knowing that the people you're worried who would judge what you write won't read it. Sort of like how you can keep it hidden from family then write the truth about how shitty you feel just to get it out there but not worry them at the same time. 

And finally. I was asked by my doctor if I wanted to take part in the Kalydeco and VX-809 (I think?) trial. Now this was just to ask if I'd like to see if I'm eligible. I don't know yet - I went for the tests yesterday (after umming and ahhing like a moron) and they did several, including basics like lung function, sats, temp, heart rate, weight, height, blood tests and an ECG. I've also got to wait for them to organise an eye test too, I was asked various questions like do anyone in my family have glaucoma or cataracts so I assume its to check everything's in working order. Once I've had that then they'll make their decision on whether they actually want me in the trial. Then they either give you the real drug or the placebo. It's a 6 month trial but providing everything went okay, my doctor seems to think the drug could possibly be available to everyone within 2 years. Seems a long time to wait for some, especially for those who feel they need it now, or are on the transplant list etc (you can't take it once you've had a tx though) but in the long run, a 2 year wait is necessary for those who can take this drug in the future to have a much easier life where CF is concerned. 

Whether I get on the trial or not, blood takes in the immediate future may be interesting. I never have problems usually. Either I've got good veins, or I know some bloody skilled nurses and drs, as they always get everything they need in one go. But when the nurse tried to get a mere 3 vials, my one trusty vein wouldn't co-operate. It was incredibly painful and I actually had to ask the nurse to stop and just try somewhere else. This vein wasn't gonna give us anything and damn it was fucking hurting. I've even got an impressive bruise. Although I don't blame the nurse at all - she was lovely about it, apologised and got everything from another vein in my hand with no problem. I think it was just because I hardly need blood taken (I don't have aminoglycide IVs and they only take blood in admissions, annual review or if there's some need to, like a dietitians request to check my sugars more thoroughly) but this vein was used 3 times in august when I was in. Speaking of that, I got home after the full two weeks in, and I did feel better. I've got a bit of a cough now which is irritating that nearly double the amount of IVs I was getting still didn't seem to last any longer than my usual amount. 

My doctor did confirm that my LF had gone to the 30%s. It's back to 40% now according to the machine from yesterday, although this was a computerised one and Im used to the old school machine with the tubing and everything, so it took my average instead of my best attempt. 40% is the lowest allowed lung function to be accepted onto the trial so I've still got my fingers crossed. You have to have a lung function of between 40 and 90%, so there's room for improvement, but also a tiny bit of leeway as your LF can drop a bit, so it's dangerous to do it with anyone iller. I'm still hopefully improving from my drastic drop of basically halving my LF in a matter of weeks so I'm hoping that's the last time I see 40% and everything will be higher from then, and I'm trying to improve my weight and do exercises to improve it - it's hardly going to get better whilst I sit and watch tv...

Aaaaand with that, I'll let you escape. I have a massive habit of not writing for a while and then trying to rival war and peace. I really need to work on that. 

Thursday, 8 August 2013

Not what I'm used to

When I get ill, as in, poorly needing IVs, I've almost always gotten away with a couple of weeks of my usual cocktail (colomycin and ceftaz over the last few years since we ditched the tobramycin for the colo in favour of grasping whatever hearing remains) just with simple home IVs. Maybe a third week if I've needed it... but nothing extra. All my hospital admissions since I changed to adult care, have been last minute things cos of feeling extra crappy, low sats requiring temporary oxygen for a few days - a week, and have always been through last minute quick appointments with the cf consultant, ether the day we phone up asking for a quick slot, or the day after. I can't remember the last time I was admitted straight from a regular routine check up. And I've always been quite pleased with my ability to stay out of hospital as much as possible.

Until Monday.

Two and a half weeks ago, I had a routine clinic appointment, which was slap bang in the middle of the massive heatwave that was hitting the UK from all angles. So naturally, I was putting down my exhaustion and coughing down to the heat, which I'm not used to at all. At that appointment, my sats were 93 (low for me but not too low to require o2) and my lung function had dropped a chunk of 15% or so within a few weeks since my previous appointment/admission where my original IVs hadn't worked. So that was a surprise, to see quite a drop not too long after finishing 3 1/2 weeks of IVs. We wondered if it was due to the heat, which I was hoping, or the tobi pod haler, as it was my month on. I was crossing my fingers hoping it wasn't, as the idea of having to ditch the inhaler and go back to the neb version, is almost soul destroying. Anyone who's had to sit with tobi neb for about 20 minutes with a dying eflow mesh (or any amount of time really) will understand due to the horrendous taste that makes you want to puke rather than continue to take it.

In concern for my reduced lung function, the dr scheduelled an appointment for 2 weeks later, opposed to the usual 6-8 weeks, to see if my lung function would creep back up after finishing the month of tobi pod, and also with some salt tablets cos of the goddamn heat. So two weeks passed and although I wasn't expecting amazing results, I was hoping I'd get away with scheduelling some IVs to start in a few days time, as my boyfriend was planning to take me back to keilder for a couple of days.

That, didn't go quiiiiite to plan. Sats of 89 (for someone who usually has them at 95-98 on room air, I'd been feeling it for weeks) I'd lost 1 1/2 kg in 2 weeks (understandable due to loosing my appetite entirely and also feeling constantly sick from all the coughing, I'd been eating only a few bites a day some days) annnnd a further CHUNK of lung function lost. I'm not sure what it is in %, it's never been this low for me, but its at 1.10L. 1.30L (which is was at the previous appt) was around 40ish % so frankly, I don't want to know the numbers. Numbers scare me, and I've been quite happy trying to keep my LF in the 50-60%. That said, 4 years ago I was hitting 80%. I have no idea where it went, but I'd so love that back one day. Anyway, with how shit I was feeling, so tired, out of breath, coughing and everything else, the dr just looked at everything and said straight away "I think you need to come in."

Well bollocks. I understand that was the right choice, no self respecting dr could possibly send me home in that state without a plan. I was just so annoyed that my lungs had managed to mess up one thing I had planned, and that the feeling crappy wasn't down to the heat and wasn't going to go away on it's own. There were no beds on the ward that day. Lucky really, I didn't bring much with me (there was a couple of days of clothes and meds in the car as we were meant to go straight to keilder, but I knew that wouldn't be enough, and was missing some of the more vital things). So I went back to my boyfriends, stayed the night, and went home in the morning where we phoned the ward to find out if they had a bed. They did. I had a quick shower (always important to grab the last full shower before being accessed!) and packed my bag and was wheelchaired up to ward 52 as I was too tired to walk around the hospital.

 Toobs in abundance. (Not boobs, Gem. I'm not that lucky in that department...)

Sats of 87, a temperature, high CRP, low white blood cell count, a blood gas, some antisickness tablets and an xray later... I'm on 3 IVs 3 times a day and 24/7 oxygen until the damn sats go back up on their own. I'm on my usual colomycin and ceftaz (although theyre usually only twice a day too) and aztreonam IV. This one is new for me, but I've been hearing amazing stuff off others who've used the neb or the IV, so I'm so hoping that my lung function and sats go back up, along with my weight and then I can break free and enjoy the rest of the plans we have for August. The dr is playing around with the 'you may be borderline' game again, but in the 3 days I've been here so far, no one has taken my blood sugars, despite the fact that he's been asking every day. I don't see why they don't just give me a little monitor myself and I can check when they want me to. I do my own IVs, physio, nebs and tablets in here so I don't see why I don't do that too.

Whilst I've been here (I can tell I still feel shit as I'm not getting fidgetty yet. I know I need to stay till I improve some, and I've been told I'll be here at least over the weekend) Gem and Stiv have been entertaining me via snapchat. I may have abused the screenshot option a bit much and now my photo gallery is full of Gem's face.

Despite feeling poop, I did manage to have an amazing birthday on Saturday (even wore a dress, but there's no photographic evidence of that...) and had the best. cake. EVER. Be jealous... 

All this aside, if you haven't read it yet, you should go straight to Kirstie's blog and read her latest post. Keep her in her thoughts, keep all appendages crossed, send mendy vibes, whatever you choose. I hope so much that she can kick all this in the bum and come out top once again.

Monday, 24 June 2013

Slight blip, admission, and back to normality

I had a week enjoying the delights of hotel NHS last week. I was admitted on Thurs 13th June and got home on the following Thursday.

Basically, the IVs of which I'd tried hard to persuade the dr that I needed a change of, didn't do the trick. When I started them, we kept one of my usual, colistin, and changed ceftaz, which I'd been using almost constantly for every dose of IVs, for 15 years, and switched it with Tazcocin. Now, I was kind of hoping this would kick my lungs into shape. Especially as it'd been a mere 3 weeks since my previous IVs and it was really starting to take the piss (insert ironic ceftaz piss related joke here). But with how quickly the cold I caught had wrecked havoc, I genuinely couldn't have even waited till my next clinic appointment. So IVs were started and I waited for the IV goodness to hit.

And waited.

And waited.

And instead of feeling better, I felt worse. pleurisy came back with a vengeance on some days, the hemos decided to join the party, and the exhaustion was starting to make me look like I'd taken up boxing (p.s. hammer to the face related injury from the other day had no play in these attractive dark circles under my eyes) So a week into this, and yes, all this started AFTER I started IVs, I decided that I wasn't putting up with this for a further week if I was going to continue to feel shite and not improve. I mean, 2 days after starting IVs, usually I can tell a noted difference. Mostly cos the crap in my chest can't wait to clear itself and I shift a serious amount. This time it was different. Horrible chest, horrible chest contents, a death rattle that would stay all day and give me a break for a mere 5 minutes after physio or hypertonic saline nebs, before starting up again. So I had my sister call the chest clinic. First mention of hemos and their ears perked up. Admission was mentioned, and I was told to come into clinic at 2ish to speak to the consultant. Even though he was quite busy running the chest clinic, the chest ward, and HDU. The outcome of this, was that they wanted to admit me straight away. The ward was full, so they had to send home one of the regulars that are always in and refuse to do home IVs, or generally, look after themselves. The doctor genuinely said that there are a few patients who 'treat the hospital like a hotel', and the girl who was sent home so I could have a bed, has basically been in pretty much every time I have too. Which isn't often, but its often enough. I don't understand why some people refuse to look after themselves. And obviously its hard for the drs to see what they're really like at home, so they can say they take everything, do all nebs/physio etc, when in fact they're not, and they've already got their bags packed basically to re-admit themselves. I know some people have no choice but to do IVs in hospital, which is fair enough, but some people just don't even try. Obviously the idea of spending so long in hospital, willingly, is mad to me, as I hate admissions from all aspects, and then some. But still..

Anyway, I digress. So, I did get a bed on Thurs, but the plan of action didn't exactly involve much. They gave me a steroid increase to 30mg whilst I was in, and made me finish the rest of the 2nd week on the same IVs. It didn't do much, but by the end of the 2nd week, my chest was a tad clearer and the hemos had stopped, but I wasn't 100%, so they put me back on old faithful, ceftaz and colo, for another week (and a half if we're being picky). So the drugs were changed half way through my week long stay, and I was able to go home on Thursday (after about 3 different doctors asking whether I preferred Thurs or Friday, I couldn't have chosen quicker to be honest. I had the pharmacy and a couple of nurses double checking the IVs to be delivered on Thurs afternoon at home, so I could finish the course. I thought it would only be a few days worth as three weeks would mean I finish either today or tomorrow, but I actually finish on Thurs coming, judging on the amounts of intermates in the fridge.

You'd think home IVs would make things so much simpler... and it usually does. However, the pharmacy managed to forget to give me one of the drugs, and delivered 14 (7 days worth) of ceftaz in intermates (when I usually have syringes, cos no one thought to check that part with me. TA!!) I got absolutely no colomycin at all, and both the delivery men and the hospital didn't have a clue what had happened. Lucky that it was colo, and that its simple to mix up, as I have plenty of vials from nebs, I know the dosage I need, and you only need to add saline to mix it. If it had been the other drug, we were probably looking at me going back into hospital until I could have some delivered (especially as deliveries are arses over Fridays/weekends). Basically I have to suck it up and mix my colo IV twice a day until Thursday evening which is my last dose. Not the worst thing to happen when some people have to mix up every drug, every time, but still, annoying to have the mess happen in the first place.

I'm just glad I was able to finish these at home, cos I don't personally notice a difference between home and hospital, other than the fact that I hate waiting on someone to bring me my IVs etc. I even had the joy of having to get someone to replace my port needle on the Tuesday. Our hospital says it should be replaced after 2 weeks, so I went down to clinic via insane wheelchair driving porter to get it changed. The nurse who did it said she was learning, and I'm fairly sure I was her first or one of her first attempts. She did well, despite poking me too hard on the edge where the tube connects whilst trying to get into the right position, but accessed it fine and it flushed fine too, even though she pushed it sooooo slowly, probably just out of nervousness. When I got back to the ward I noticed it felt weird, like it was sitting at an angle and I seemed to pull the skin around it when I moved my arm (or yawned...) I ignored it, but must have caught it at some point, as when it came to do my evening IVs, nothing would budge, and luckily my nurse for the night knew how to access ports, so 10 minutes later I already had a new one plonked in much more nicely.

But yes, it's nice being home and not worrying that you're a burden. It's nice to be able to see my parents whenever they're around, rather than just for the short while they visited (basically every day, sometimes with my sisters too) and it's nice to have been able to spend a couple of full days and entire weekend with my boyfriend rather than worrying about him driving home through newcastle at 1 in the morning. The handy thing about our unit is that as it's sort of separate from the rest of the ward, we don't strictly have visiting times. Which meant there were a few late night visits and trips to the hospital costa, and those are the things that keep you going just that little bit more. And obviously I've got massive love for gem, stiv and my old friend steph who all texted me loads and kept me company basically whilst I was in and they're a fair distance away so couldn't visit.

And as always, the photo spam.

 Being highly mature at clinic a couple of weeks ago

My room on the unit. No fridges anymore cos of infection control, but we do have ensuites (to the left of where I was standing) and flatscreens with freeview, so there are worse situations to be in. The sweltering heat wasn't helped by the minimal opening windows though, and we're not allowed fans "in case they blow up." Cos that's normal. 

Not the worst hospital food! apart from the tomato soup, vom. Our CF menus even come with nice trays :D

 We have a sign :D

 What I do when I'm bored, whilst either entertaining or pissing off the rest of the ward with my itunes blasting

 My favourite tray :D it's so me, I was seriously tempted to nick it if they wouldn't question it's disappearance 

Bored, can't sleep, so it's instagram selfie time, clearly.

Saturday, 1 June 2013

Because frankly, I need a good old rant

So, last IVs, lasted for 3 weeks (and weren't actually that necessary in the end. I'd asked for a further week due to still feeling run down, and that was actually due to the anaemia). My chest did feel better though, and the iron tablets have helped my energy levels go back up to normal, and I no longer look like I've had frequent meetings with various doors/walls/cupboards... you know, the usual stuff I bump into daily.

I think we all know what comes next. I caught a cold. The unfortunate part of having a younger sister, is having a younger sister who's still in school, and who likes to bring back all the manky germs that those little spawns of Satan enjoy to harbour. I tried my hardest not to catch the cold. And when I did, I tried my hardest to get rid of it. I did manage; it was gone within 3-4 days. Unfortunately it was a quick mover and I already had the dry tickly cough, which soon turned into the nasty chesty cough. It's awful having the dry cough, as it's constant, doesn't stop, none of the little tricks we know will stop it, and it's just exhausting. So you can't actually wait for it to progress as a chesty cough can be treated, and there's stuff you can actually do about it. But that also means a chesty cough needs antibiotics, and the simple stuff will just never do.

I'd happily take Cipro, or alternatives, if I could (or if they were offered...). For a long time now, cipro has been a no go for me, seeing as I never felt any better, my chest never changed, and it was pointless to put up with the utter loss of appetite and the silly 'don't take at the same time as milk' rules for two weeks. I did try once again last year, after feeling run down after my holiday, but the loss of appetite (which drs don't seem to want to believe, for some infuriating reason) was actually awful, I barely ate, and despite sticking with the entire two week course, I felt no change (and caught another cold during, so was back on IVs the week after).

Yesterday, after putting up with this chesty cough from hell (along with loss of appetite, tiredness, chest pain, chest gremlins, coughing fits that leave you gasping and needing to do extra nebs just to cope... should I carry on?) I had an impromptu hospital appointment at clinic, hoping they could sort me out. I knew this would mean antibiotics of some description, but I hated the idea of yet another course of the same IVs, when the well-ness hadn't even lasted as long as the previous course had. I pointed this out, that I'd have orals if I could (if someone would bloody stretch to something other than cipro. I was lied to and was told levofloxacin doesn't treat pseudo, and other suggestions were ignored, despite being told of these by other CFs with the same bug at different hospitals) or that if I had to have IVs, Id rather not have yet another round of ceft, the same drug I've had for about 15 years for just about every round of IVs, and colistin, which I've also had constantly without change, since switching tobramycin for that several years ago.

First suggestions were cipro. No thanks. Second was meropenum. I felt AWFUL on this drug, I remember not being able to go to school for a few days for feeling so rubbish, and sleeping for nearly 2 days straight. The dr who needs to sort out his God complex said 'Mero doesn't make you sleep. And whats so wrong with that anyway...' second suggestion was Tobramycin. I said no thanks, Id rather retain the little hearing I have left. Because there was never an actual conclusion to why I lost my hearing (was it down to a random gene that reacts to aminoclycides that anyone can have, or purely down to the levels being too high?) it's not something I'd like to risk right now when I have other options and I'm not that desperate. Finally, he said I could have Tazocin. He then tried to push Tazocin with oral cipro, and I said no. So as of Tuesday, I start Taz and Colo IVs, for two, three, who knows how many weeks (probably three I'd guess. I've never heard of anyone in my hospital having longer than 3 weeks of IVs all done at home).

I wish that I could say I went into this appointment, got the drugs sorted and left. Unfortunatly, I think the doctor was trying to kill some time of a Friday afternoon with no other patients, and decided to yap on about how he thinks I'm maybe 6 years or so away, mostly likely by my late 20s, from needing transplant.

Yeah, transplant. 

6 years away or 60 years away, I don't think this was the time to bring it up. I hated him even more in that instance, as transplant for me, is something far away in the future that I don't like to worry myself over. I'm aware that my life is most likely going to include one, unless the kalydeco for DF508 or anything else actually halted all decline and highly improved my quality of life. But I've always thought it was so many years away it was not something I had to rack my brains over at this instant. And I'm still not, I'm just so angry that the doctor thought it was a good conversation topic, with his shitty little prediction, when in 6 or so years, who knows how many changes in the medical world they'll be? And in my personal world? What if I stayed at this level of lung function for another 5-10 years before dropping anymore (my lung function is around 50-60%, another reason why transplant isn't exactly on the forefront of my mind), what if I caught a bug that made me decline fast? Either way, starting the conversation with 'Well at this rate of decline with your lung functions over the last 5 years...' and banging on about how I have quite bad scarring in my lungs (yes I KNOW thank you) and how my weight is still a bit too low for transplant level (fantastic, so in your eyes I have 6 years to increase my BMI one number up). It took so long to get to the point where we finally started to discuss IVs, as like I said, all orals were thrown off the table due to me not bothering with cipro and levo being veto'd by the doctor himself. Also doxycycline and chloramphenicol (as suggested by Gem and Mich) were both utterly ignored, as were my wonderings on whether my steroids, at 10mg a day for the past several years, could be a reason why I catch everything going.

There is a reason why we've renamed him Doctor Penis. My usual, fantastic doctor, who listens, and actually has medical training from this century (and a much, much better bedside manner) was away on his holidays. I'm hoping he'll be back on Tuesday when I go to start my IVs so I can have a good bitch, as the nurse I saw (and any other nurse, actually) didn't agree with why I was so angry at the doctor, and said 'Do you know what his job is? It's to keep you well enough for as long as possible until you need to actually go on the list.' And that's all fair and well. But trying to scare the utter bejesus out of me about something that is in the future (far, FAR fucking away in the bloody distant future) and taking an age to get to the point where he was actually going to prescribe something to help me in the present moment, the moment where I needed treatment to feel well again to ensure that future events don't move into sooner future events, is not a fucking good way to talk to patients. 

Even more annoyingly, amidst all the transplant annoyance, he went through every drug on my prescribed list and said 'Do you still take this? And that?'

Believe it or not, I try my hardest to be compliant, I take every medication and tablet and nebuliser I need to do. Talking to me like a patronising twat, as if I'm some stupid stubborn child who won't take their creon, is another reason why I hate to be in the same room as him.

The final little irritating nail in the coffin of annoyance, was the fact that his eyes couldn't seem to cope with the cleavage in the room. His eyes were darting everywhere from me and my older sister, and I'm so, so glad neither of us were wearing low cut tops, cos he would have had a heart attack in his old age to see any skin from the neck down.  

All I can really draw from this, is that it's hard to be a young woman trying to talk sense into a doctor who thinks he's god's gift and cannot be wrong, and refuses to admit he's set in his ancient ways. From what I've heard, other patients, male patients I should add, get on with him fine and find him a good doctor. Funnily enough, I've heard one or two complaints from them, but the majority come from other women. Basically, he's a sexist twat who really needs to retire. Or at least try and stop impersonating Simon Cowell with the hoiked up trousers.

Monday, 13 May 2013

Anemia, and a onesie.


I had a clinic appointment on Friday, usual crack and annual blood results from 3 weeks ago. Interestingly, I started IVs on that appointment as I felt beyond awful, and actually felt like crawling to the clinic I was constantly knackered with a shitty cough from a cold I'd caught during my previous IVs (about a month before) so basically wanted to start IVs immediately, not even a few days later. This meant that my IVs came from BUPA, home of the cock ups, instead of the hospital pharmacy like usual.

First, no one actaully asked me what I needed ordering (I have like a lifetimes supply of saline, needles and syringes at the moment) so I got even more of those. Secondly, they sent both IVs in intermates as opposed to one intermate and one syringe, so IVs were taking about an hour and a half to complete. Plus, when you get intermates from BUPA, they don't prime the line, so you have to make sure you remember to let the drug go all the way to the end of the line before connecting, which I almost always nearly forget to do. We managed to get the second and third (as I still felt crappy) week in one intermate/one syringe though which made things easier and quicker. Plus, you do worry that you're accidentally going to give yourself two doses of colo or ceft as they look identical other than the name printed on the sticker. With me being me, the person who can cut themselves on a yoghurt pot lid, I think its necessary to double check these things as a precaution.

They also managed to mess the delivery up by sending 7 doses (instead of 14) for the third week, after the hospital nearly ordered another 2 weeks instead. Someone must have mis heard '7 days' for '7 doses' and I ended up needing a further 2 deliveries of more IVs, and cancelling another one that would have been 3 days after I'd finished.

And you wonder why I have no faith in BUPA!

Anyhoo, so I came back to hospital 3 weeks later, quite interested in what my bloods would show. Weirdly, my CRP (infection levels) were at an amazingly low 5. Anything below 10 (or is it 12?) is brilliant, anything higher suggests infection. I'm obviously happy that it was really low and well into the acceptable levels, but it confused the absolute hell out of me as I genuinely felt awful when they took my bloods that day, and had done basically since I'd finished my previous IVs. There was something else though, which has nicely explained why I've been so tired, out of breath (especially strange right after successful IVs) and look like I've been repeatedly punched in the nose from being so exhausted - My haemoglobin levels were 80 - they should be between 115 and 145 or something (I think anyway, and I don't know what they measure in at my hospital so googling is getting me jack shit. Wiki says 121 to 151 g/L so mine are still low by that result). So I'm anaemic and have been plonked on iron tablets to help. I'm really hoping they do the job as I'm so annoyed by feeling tired when I've not done much, or just done what I usually did and felt fine previously. I think I read something about haemoglobin also being involved with oxygen in the blood in some way, so I wonder if that could explain my headaches (especially when I'm tired after a long day) or if it was regular low sats from busy days which have resulted in said headaches. Either way they can piss off! I did request another exercise tolerance thingy so they can see what my sats do when I walk around though. Its a bit irritating dragging behind, tired and out of breath and having to have piggybacks all the time.

The low haemoglobin results also meant I had loads of other results in the red too - Platelet count, haematocrit, RBC, MCV, MCH, white blood count, neutrophil count and monocyte count. Although some of those are always going to be too high or too low due to things like constant infections and so on. A lot can be fixed by fixing the anemia, thankfully. All my vitamins and so on are perfect though! And my HBAC1 is 45. Diabetic diagnosis needs a result of 47 or higher, so I've been told to try and cut down on sugar, but carry on plowing away the calories, as I managed to gain 0.8kg in three weeks, woo! I think the threat of the feeding tube definitely shook me to my core at the previous appointment.

The (extra) annoying thing about the resulting anaemia, is that there's a research trial in Edinburgh and London going on at the moment. It's not Kalydeco, it's a nebuliser which is to do with seeing if they can completely halt (or possibly even reverse some, I can't remember) lung damage in CF patients. It involved once a month trips to Edinburgh to recive one dose of the drug via a neb every time, and they'd refund your travel etc. It seemed good so I said I was interested and was sent loads of info on it, especially as I was the perfect candidate with lung function between 50 and 80% (not too low as there may be a slight drop, and not too high to not notice any improvement) and with no recent sudden changes in my general treatment. My anemia means I can't participate though, which is shit. However, my doctor said there's Kalydeco and Ivorcraftor (?) trails going on for DDF508 in the summer (can't remember if he said this or next years summer) so he's going to try and get my haemoglobin results (along with everything else) back up to normal in time so I can do that one, woo!

Finally, if you've ever wondered what I look like in an age 13 leopard onesie, wonder no more!

I don't know who they're modelling their sizes on, but the XS in primark was still like half a foot too long, so I had to venture to the childs section. It fits nicely, but I am fully clothed underneath, so it'll probably be looser if I wasn't wearing jeans...

Tuesday, 23 April 2013

Public transport, and why I shouldn't be allowed to own a car

One day, I was on the bus. Now I should mention that I was sitting in one of my more favourite seats - The ones where there's two sets of two seats facing each other, sort of like on a train but without the little handy table. I like these seats as I've got more leg room (despite that I never need much) and it means that I don't have to awkwardly ask the person sitting next to me to move so i can get off. Turns out, other passengers aren't psychic and you can very nearly miss your stop if you don't pipe up.

Anyway, so I'm sitting in my seat, thinking it's getting a bit warm, so I should take my hoody off. I was on my own, but it was mid-afternoon and the bus was quite full, so all three other seats in this nice little square were taken by random men, as well as the other four seats on the other side of the aisle, also by 4 random men.

So I innocently take off my hoody, cos no one wants to get all hot and sweaty and begin to smell. It doesn't matter if you're surrounded by 7 men, they'll know it's you. And of course, the inevitable happened. I managed to successfully remove my hoody. unfortunately, my t-shirt decided it had a strong attachment to said hoody, and came off with it. It was a few seconds before I was able to pull my t-shirt back down, but I'd managed to flash basically half the bus. My tips on how to avoid further embarrassment involve trying not to go beetroot, staring out the window like nothing happened, and legging it off at the next stop, even if its not your stop. Sometimes waiting 25 minutes for the next bus might be worth it to retain some dignity.

I've since managed to avoid any further public embarrassment of similar kinds, but thats thanks to the fact that I drive and have a car, so only take a bus if I'm forced against my will. This means that when I first got my car, there was a new establishment introduced into my life:

Petrol stations

They are not my friends.

I've managed to get my card stuck in the machine at one of those 'pay at pump' places next to the supermarket. This caused a massive back log and sending my sister into asda to find someone who could rescue my card. 10 minutes or so later, I had my card back, and was able to drive off. I never did get my petrol that time.

My petrol cap is my worst enemy. There's some stupid way to open it, involving my keys, where I have to turn it one way, and turn the keys the other way. Once it's finally open, and I've filled the car up, I've got to re-lock it. This has taken up to several minutes and I've been offered plenty of help off random other drivers, but I never can get it myself first time.

I've ran full pelt into the glass door at the petrol station. In fairness this was when I was younger and my mum had said i could go choose some sweets. Turns out, even if you're 10 years old, running smack into a glass door is hilarious and everyone will laugh, rather than help you up.

It's taken me a fair amount of time to learn how to park an adaquate distance from the petrol pump. Too close and you have to squeeeeeze out the little gap you can manage to open your car door. Too far and you spend another 10 minutes trying to readjust the parking attempt and have a lot of angry people in the queue behind you.

Being mistaken for being too young to pay for petrol. A couple of times I've gone into the little shop to pay, and I've been told that I have to be over 16 to pay for petrol. Despite the fact that I've had my car since I was 19, therefore always been old enough. And despite the fact that I, A, have already filled the car up, and B, am holding my CAR KEYS and C, also have a valid licence, I really missed a chance to get some free petrol, rather than pointing out that I am in fact over 16.

I've gotten back into the car a few times to notice that I never actually put my handbrake on. It's handy the ground was flat. In fact, when I was using the hoover at the petrol station the other day, I did the same thing. I only noticed when the car started to slide forward when my sister leaned on it. A quick dive into the car (narrowly missing knocking myself out, which is standard for me) and the handbrake was on and my car didn't have slide into the big bush next to us.

The 1p monster. Something my sister likes to tease me about, as I just never seem to be able to get petrol at an exact pound, and always end up 1p or so over. I can always tell on my bank statements which amounts are from petrol stations, as it'll usually be £10.01, £15.01 or £20.01. One day I WILL manage!

On a different note, I've been very arty the last few days, and made these two melted crayon canvases. Oh and two photos of me, so you don't forget my face.

Monday, 15 April 2013


In honour of the amazing sharky, aka, Clare, I've decided to write a blog on some of the stupid moments of my life. Most of one happens to be my mis-pronunciation of SO. MANY. WORDS.

Sadly, I can't actually blame my deafness for this. I've been corrected so many times that my sister has basically complied a mental list of all the words I say wrong and has basically given up on correcting me, because I have the memory space of a gnat. The problem I have, is that I like to pronounce stuff the way it's spelt. Unfortunately speaking like this means I sound like a mentalist and shouldn't be allowed out in public.

I can't order these in a restaurant because no one knows what I mean when I say 'fa-jee-tas' But can't you see the innocent mistake?! It shouldn't have to be so finicky to pronounce

There's some sort of stupid way to say this word apparently, and 'nat-ur-al' isn't correct. Why is the british language so ridiculous?

This one is totally justified in getting wrong. There's a park in Hexham where I spend most of my time terrifying small children, and whilst its called the Sele, it's pronounced 'Seal'. So when I was 14, asking my mother to drop me off at the 'sele' (and pronouncing it 'selly' which looks like how it SHOULD be said) entrance, my sister had no idea what I meant until I explained 'Y'know, the big park thing. Over there'. The laughing fit that followed looked like it was enough to snap a rib.

Apparently asking to watch Greys 'anna-toe-me' isn't a programme and resulted in at least 10 minutes of my mother and sister teaching me how to correctly pronounce anatomy. I still can't remember how.

Gem will appreciate this one... It's only recently that I've been told that its said 'Gloster', and to think of the little rhyme that went 'Dr Foster went to Gloucester'. I was actually pronouncing it 'Glou-chester' which meant that when trying to explain to people where Gem lived, resulted in confused faces and them probably thinking that I was making her up... I still have a problem remembering the correct way but then I just remember that handy rhyme.

I cannot be the only person who pronounced her name wrong whilst reading the Harry Potter books when I was younger. I think I said 'Her-min-y' which confused my gran when I tried to talk to her about the 3rd book and she had no idea who I was talking about. Apparently, its a common thing (maybe not specifically with my version of pronunciation though) so good old J.K slipped in how to correctly pronounce her name in the 4th book when she was talking to a foreign student who couldn't seem to get it right. In fairness, I have a habit of reading things fast and mixing up the letters, and spent several books reading the caretakers name, who is actually called Filch, as 'Flitch'. I may have also spent the entire 3rd book thinking Sirius Black's name was actually 'Serious'. Note to self: Read slower.

I'm aware this doesn't help my case when I previously tried to point out that I'm not actually thick, but I've decided, who cares, having a more relaxed and happier outlook on things (especially if you lead a highly embarrassing moment filled life) is much more important than what people do or do not think of you. Also, that's only a tiny handful of the words I can't say properly, there's a tonne more, believe me, but cos I tried to think of them, naturally, they all just seemed to vanish out of my mind.

I'll miss you Clare. Your funny stories, your sharky love, and your general wackyness that will in no way be matched by anyone X X X X

Friday, 15 March 2013

The first blog I ever read.

When I was 17, I read an article which contained an excerpt of alrighttit.blogspot.com and it was genuinely the funniest, wittiest, interesting blog that I'd ever come across. Not that I'd read many back then, but now, 4 or so years later, it still ranks high in blogs I'd look forward to for the next post.

This was actually the blog that encouraged me to start my own. I had no idea what to write, but it seemed like a good way to vent about everything CF, publicly posting it and seeing who it reaches, which has for me, given me some of the best friends I've known who've contacted me and we've struck up a friendship because of comments of emails that originated because of our blogs.

Admittedly, it doesn't seem to fit with the other blogs I usually read, which are written by CFers, or similar, whatever the content. This blog, written by Lisa Lynch, was about her journey through breast cancer, which at first was just to keep her family and friends updated on the news. Word got out about the blog and it became quite popular, getting reviews from famous people and even expanding to a book. The whole thing followed her diagnosis, treatment, and defeat of cancer. And it continued to follow her as she got back into her 'normal' life (if anyone actually has one of those). Sadly, it then transpired the cancer had come back. But the prognosis was good - whilst it wasn't going to be eradicated, there was still a good few years left on the clock. Then time seemed to speed up, the cancer went into her brain and bones, and those years turned into months.

Lisa passed away on Monday, and apparently true to form, exactly how she'd planned it.

I'm gutted, really. I never personally knew her, but I read every post, and I'd appreciate every comment she left on my own blog, and loved her way with words.

The blog is still to be continued, written by two of her friends, and she seems to have an uncanny ability to know people (as well as having the way with words herself) who have 'just' the knack for writing in a way that keeps you gripped, interested, laughing, crying and just generally absorbed and awaiting the next post.

So I'll continue to read, and love the blog as always.

Sunday, 10 February 2013

The truth about the internet

In all honesty, I hate how things are communicated these days. I talk to a lot of people mostly over text or facebook, and I hate how things are lost in translation. Not only simple things like sarcasm, jokes etc as you can’t always easily guess the tone of voice, but opinions people have and also what people are really truly like.

What if someone actually can’t stand you and they seem to just talk normally through facebook comments etc, whilst in fact they’re sitting at home rolling their eyes at the computer screen when they see they have a notification from you. I hate the idea of bothering someone. If people take a while to, or never do reply, I assume they’re sick of me or don’t like me much therefore I'm not good enough for the time of day it would take to write a reply. I'm very aware that's easily just me being paranoid, but when text or facebook are my main ways of communication with a lot of people (especially as I can't just pick up the phone and sometimes struggle in person to understand things) it really annoys me, and hurts when people just don't seem to bother with the effort.

I'm not an overly confident person myself - I struggle to meet new people especially in person as my hearing severely affects my ability to listen and understand I worry I come off as rude (and thats been confirmed by the looks I've got off people when I've not responded to something and I've not yet explained to them I'm deaf and need to lip-read) which obviously means its hit my confidence in all areas and I'm quite shy and this has gone over to meeting new people online, as I'm never one to just strike up a conversation. If people are busy or don’t have much to say they may write short, quick replies, nothing wrong with that, but again the tone can be lost in translation and you can easily assume they're just not interested or that you’re bothering them.

It’s annoying and distressing and half the time I just feel like giving up on trying and ultimately becoming a social hermit and not speaking to anyone. But would they notice seeing as I rarely pipe up or they’re in fact not that fucking bothered what I do anyway. The other thing that bothers me is how people’s perception of you over the Internet can be very jumbled. I hate how people assume to know you cos you’ve spoken to them a bit. I know some people think I'm some annoying thick blonde whose opinion is irrelevant because they don’t know me, they think I can’t follow things intellectually just cos I don’t necessarily talk about that stuff or use 'big words'. I once spoke to someone online through status about the more complicated chemical understanding of kalydeco on facebook, they were wondering about how it actually works and I've read a bit about it and understand it so I told them what I knew. A mutual friend saw what I said and was totally shocked that I had the ability to comprehend that information as they just think I'm an idiot who gets confused and bumps into things and did photography at uni cos I was too thick to do something that people may consider an 'actual' degree. For your information, I understand a lot of how kalydeco works as I've taken my time to read and understand the terms used (even though I got bored in high school bio and chem) and I did a degree (and I'm very pleased with my 2.1) in photography cos I enjoy it and didn’t want to spend 3 years doing a Maths or English degree when I don’t have a want or use for them. My gcse and a level results may not be the highest as I admit I struggled in school since I was 10 (due to the fact that I couldn’t hear the teacher and didn’t get any extra help so was expected to be able to do and understand work set when I couldn’t even hear the teacher explaining things to the rest of the class) but personally I don’t think that makes me thick.

It just really annoys me how people seem to judge without knowing, or they think they know you cos you’ve spoken a bit, and assume things, when in fact they’re so far from the truth but won’t actually admit cos they believe they ‘know you’. I’m fed up of trying to talk to people, I’m fed up of people not being interested if I do try, and just generally getting to the point where people piss me off because of this! I’m so aware that I could be just doing exactly what I’ve written about and pre judging people’s opinion of myself through miss reading of context, but that’s the over all thing that annoys me, as it’s so easy to do. 

Ultimately, yes I’m ranting, no I don’t really care, and if you’re one of the people who think I’m annoying or that I’m an unintelligent little thicket without even knowing me, then you can in fact do one, or tell me to my face that you can’t stand it when I join in on comments or something seeing as you so kindly ignore me. And especially if that’s true, please tell me what the fuck I’ve actually done to annoy you seeing as I can’t for the life of me think of what I’ve done to annoy people I’ve barely known to the point where I can clearly tell I'm a nuisance in their life.

Wednesday, 30 January 2013

Blog name change

Trying to change the blog title of this as I'm just sick of 'sixty five roses'.

I know a lot of people like it as its a more innocent way of saying 'cystic fibrosis', but it's so generic and over used, so I'd like something more unique, and hopefully a bit more me.

Unfortunately I have the creative capacity of a teaspoon, so I'm struggling. It takes me ages to think of a decent summing up title for a simple blog post, so this is impossible!

Any suggestions on a post card welcome!!

Friday, 4 January 2013


Because I am a blatant little copy cat, I've decided to mirror Gem's post on a summary of 2012, by the highlights of each month. Mostly because I always write a summary post at the end of the year (we're 2 days into this one, it still counts) and this seems like an easier way to summarise everything up, providing I remember (hello shit memory!). So I'll take a dive into my previous posts/diaries/and maybe a bit of facebook seeing as everyone chronicles their every living move on there... and try and remember what happened through 2012.

Went to London with college, which was a bit of a mixed bag but ended well, was on and off IVs far too much for my liking.

Went to Edinburgh with the boy! Our first couple of days away and enjoyed it so much. It was so nice to be alone together properly

Marks the beginning of all this potential CFRD ridiculousness. Thankfully up to this point I've still not needed insulin but it looks like I'm borderline and will probably end up needing to stab myself after eating half the sweet aisle one day in the future. And everyone melted in some insanely nice warm weather for a change.

Quite a boring month, but I did get a distinction for my portfolio project which I was thrilled with after all the work i put in (and how much it cost!)

Managed a whole 3 months off IVs for the first time in a while (and possibly the only time through the year) which was a lovely break of being able to have unawkward showers for a full 3 months. Its the little things. Did the last few things at college before basically being finished for good, before our graduation in a couple of months.

Went to Spain with the lovely boy :) Had an amazing week away and freckled lightly.We also had the final show exhibition for college and it went quite well. Since the show I've sold two of the three prints I had displayed, as they were just sitting in the house collecting dust, and the third I gave to my sister as she wanted it on her wall.

I graduated college! With a 2.1 (merit) thank you very much! Tried cipro for the first time in years in my reluctance to have IVs so soon after finishing them, and it failed epically as I lost my appetite completely and I also caught a cold. Ended the month starting IVs in time for my birthday...

My 21st! And a couple of days away with the boy, which was my birthday present off him. Camping in a cute wooden 'pod' and a photographic experience day seeing some gorgeous owls! Sadly certain people wouldn't let me steal the tiny tropical screech owls even though they'd happily fit in my pocket.

Feeling a bit strange at this point, as I was so used to entering a new year of education at this point, but I've actually finished for good, as I opted to not do the optional 3rd year, as Ive never been keen on the idea of dissertations, or even writing a 500 word essay. This was also coupled with the fact that this was a separate course, so the new 9 grand a year fees would be mandatory. Thankfully I'd got into uni for the first two years just before this, and whilst I already have a hefty bit of debt because of two years worth of student loans, I'm glad I didn't have another 12 or so grand added onto it. Also, because this course wasn't specifically photography, and only included one practical throughout the year, and the rest was essays, I decided that giving it a miss was the best, especially health wise. Instead, I've been trying to start up my own photography business. It's obviously not the most successful thing so far, but I've had a few bookings and taken photos of some lovely people, and incredibly cute babies. Suffice to say, if all works out and this becomes a proper successful job, I will love going to work every single day. Being a photographer is my passion and something I'm incredibly driven to succeed in.

Went to Chicago! I was there for nearly two weeks and honestly got quite homesick but I really enjoyed myself and took hundreds of photos

I got admitted into hospital. Sad times. Thankfully only for 5 days or so whilst I was hooked up to the O2 to tackle the awful headaches I'd had. A few visitors, lots of haribo and a couple of midnight escape wanderings around the hospital and I was once again back home. Hoping that this year doesn't have a repeat as this happened in oct/nov 2011 and now 2012, so frankly, the need for a week of oxygen every year would seriously take the piss if it was to become the norm. It's a bit ridiculous, strange, and honestly, a bit of a faf I can happily live without.I also managed to catch norovirus at the beginning of the month, and whilst I only had it for a day or so, I do not want a repeat!

A quiet month I think, not a lot sticks in my head from this month but I did have an amazing Christmas and new years, spending it with various family, my boyfriend and his family, and of course my amazing friends. Probably ate enough to make a normal person gain 3 stone, and yet my jeans are still a shade too loose! Despite feeling a bit rubbish, I had a very positive clinic a few days before christmas day, and am entering the new year happy with my lung function, positive that I can improve it, looking forward to trialing the Tobi Pod inhaler, Dnase, and possibly a stronger steroid inhaler, and of course, some looming IVs that I feel well over due for, hoping that they'll send me feeling far better than I usually do, at least lung function wise.

I can hope, right?!


Hope everyone had an amazing 2012, got suitably hammered throughout the holidays, and  look forward to a fantastic 2013 

Lots of love x x x x x

Long year? Long post

This year has been weird. I haven't done anything. Haven't achieved anything. Some time at the beginning of the year these days, I w...