Wednesday, 2 December 2015

Another belated catch up

I haven't written here for a very long time. You could argue thats a good thing - it means nothing to talk about. But thats also a bad thing = NOTHING to talk about. Nothing is interesting in my life. Even the two friends I have that aren't my boyfriend/family or have cf clearly aren't arsed at meeting up or even speaking to me (yep that feels great!). Thankfully though, CF has been boring for me too. I keep saying to myself that I should blog more, but with not really much to say, I think it would almost be a waste of writing. Anyway, I shall update you all on my thrilling life since January, as I'm betting you're all waiting with bated breath for this...

I've started exercise classes (well, a couple of months ago) So now, along with two (maybe 3 if I'm not too tired) gym sessions during the week, I have a pilates class on Thursday and a Body pump express (meaning its 30 mins instead of an hour) class on Monday. Pilates is interesting. It drags at times, especially when we get the teacher that explains every move for several pissing minutes before getting to it (and standing around doing nothing is obviously glorious for my back - not) but there's also the fact that I'm the youngest one there easily by 30 or 40 years, and that's being kind. There's several things I can't do as well as the older people can which gets a bit frustrating, although they've probably been doing these classes for several years, if not longer. So they have that experience, plus even if they probably have hip or knee replacements etc (which I'm sure some do based on individual customisation to certain exercises) none of them seem to have any restriction on the lung part.

Body pump is good fun, but it hurts! My knee, for some reason, feels like it's going to snap when i'm putting a lot of weight on it (like squats) but my sister reckons this may be weak tendons (i don't bloody know how! I've been doing this class for a few months now and going to the gym in general since Jan!) So I guess that's a question for the physio next clinic appt. I do stop at moments to catch my breath/cough up a lung and a half, but the gym instructor knows about me so thankfully she doesn't feel the need to rush over and pat me on the back. The other people there don't know exactly why I cough but i think they've overheard me and the instructor chatting so they at least know its a lung condition and I'm not a heavy smoker! One woman did feel the need to come up to me and ask if I had asthma. I don't think she knows what CF is specifically though cos when I said what I have, she just gave the 'ooooh' look that screams 'what the fuck is that?'. The class is mostly people in their 30's I'd guess, but recently 4 older women have joined and annoyingly, they can lift heavier weights than me and have improved quicker too. I struggle to lift a bar with 5kg weights on and I'm staring in disbelief when a woman who has to be at least 60 odd has a bar with 12.5kg on, and increasing. Show off.

BUT! I think these classes are really helping. The improvement has been gradual, to say that I haven't noticed myself becoming suddenly hulk like, but last clinic appointment, my lung function went up a tidge. It's not gone up in leaps and bounds, but to me, anything is huge, as usually when I'm not on IVs, I either see the same numbers as last time, or a steady decline until my next lot of the drug goodness. I go to clinic on Friday, to start IVs (i've had 3 1/2 months off which is AMAZING to me! And the longest I've gone in about 5 years! At one point I was barely coping with 4 weeks off them) but these IVs are mostly because, again, a cold did it's job and has given me one hell of a junky cough. But then again, I was aiming at IVs before xmas anyway, as last year I got the cold that ends all colds (I went to a bloody wedding and reception while not being able to stop coughing for most of the weekend), and ended up on IVs not just for christmas, but also for new years. What a way to end/start a year!

In July, John and I moved! I'd been wanting to for a while. I did like our old flat, but the more i thought of it, the more problems I found. The boiler was bust (we went over new years, for 3 days, which was some of the coldest nights of the year, with no working boiler. No heating, no hot water. Grand) and that sodding thing broke multiple times over the year and a bit we lived there. There was damp in the walls, mostly because a section in the side of the roof had come out, but i don't know if that was just one of many issues causing it. The kitchen was fit for a borrower. I had 4 1/4 cupboards to try and fit an entire kitchen in. And the neighbours were annoying - next door smoked like chimneys and had 3 loud children. Now I can't hear, we all know that, but whenever I had people visiting they always commented on the yelling they could hear from next door. The bloke downstairs was lovely but his dog barked something rotten while he was at work all day. The parking was shit for multiple reasons and we were next to a busy road which was extra fun. Next door (other side) was a timber company which periodically liked to burn what I assume was scrap wood, without notice, meaning I was stuck indoors with all windows shut tight unless I wanted to choke on the air. Oh, and it was a first floor flat! Which meant it was a chore to even psych myself up to go do the food shop.

So we moved to a house! It's 2 minutes from where we used to live, and right round the corner from John's mum and step dad, so we're always popping over and vice versa. I may still be guilty of driving down on occasion though as its a slight slope and at the moment its fucking brassic outside. Even going from indoors, nice and warm, to my car, which is right outside my door, sets me off on a huge coughing fit due to the sudden temp change. But this house is amazing. The rooms are slightly smaller than the flat, but the kitchen is HUGE! And we have a little conservatory and a little garden to ourselves, so that totally makes up for it. Our massive corner sofa doesn't fit in the sitting room due to the size/where the doors are so it's currently in two, but we're possibly looking at selling and buying a normal sofa and a cuddle chair. There's nothing wrong with this sofa, its just a shame it doesn't fit.

Even the neighbours are lovely here, they stop and chat, and are all super friendly. When one of my next door neighbours (we're on a terraced row of houses) introduced herself, I told her I cough a lot and hoped it wouldn't bother her. She said not to worry, they wear earplugs to bed because of snoring. Ace! The woman is so lovely. Sadly, her husband is not. The rude bastard knocked on my door 2 weeks ago to announce to me that I cough a lot. News to me! He said its loud, i cough a lot of the time, our houses are right next to each other, and I'm pretty sure he was either saying stop coughing or cough quieter (he's spanish so there was a whole accent going on I couldn't understand). He wasn't doing the concerned neighbour thing - he kept talking over me when I tried to explain why I cough and how I can't help it, to repeat that the houses are very very close. In the end he just left and it wasn't until I'd shut the door I fully clicked what he was saying and I was fuming. I find it funny that right after he asked me to cough less, I caught the cold a day or two later and coughed for about 48 hours without much of a break. I do think thats karma to him (even if it meant I literally coughed my throat raw). Bastard. I presume they don't cough in Spain if he thought that was at all acceptable.

The only other thing I think thats mention worthy is the trial (the drug is called Orkambi now and I think thats a ridiculous name). It comes to a close in January, although we have no idea what happens after. We do need to wait for a result from NICE, and then I think whether or not it's going to be funded at all here, and to be honest, I don't care. Everyone thinks my weight increase and my lung function increase is because of Orkambi. All of this happened in the first 6 months of the trial, where people are either on placebo or the real drug. I started getting some looooovely side effects about 6-7 months in - when there was a change in drug. But that could mean anything - that the side effects took a while to kick in, that I was on a different strength drug, I'm pretty sure there was actually a third group that was only on kalydeco and placebo lumacaftor. What I find insulting, no matter what I was on, is that they instantly assume it was the drug. I think that my weight increase was because I'd started eating at least 3000 cals a day (monitored with the My Fitness Pal app on my phone) and a new supplement, the calogen extra shots. Previously I'd had fortijuice, and I was lucky if I drank a couple of those a week because of how rank they were. I had 2 of these shots a day without fail. My weight increased, which in hand, helped my lung function and then my stability. The only thing I'm worried about, if I came off orkambi, is if there is anything being helped by it that I haven't noticed, and it tanks suddenly, and there is a little fear that my weight was at least helped by the drug as others say they have to watch what they eat now with orkambi or kalydeco as weight comes on easier. For myself, my weight is stable and has been for about a year and a half (at least) which is insane to me. I was stuck revolving at 42kg on average, sometimes going up or down. So to be at 51kg and have that number rarely change, is mad!

I suppose though, whilst the drug has been as useful as a chocolate teapot to me, as far as I've noticed, it does seem to have helped others. I've seen people go months off IVs when they were on them regularly. My need for IVs hasn't changed, it actually increased at one point, and the only thing thats helped me stay off them a few extra weeks now is the exercise, as that's the only change. I just think it's insane the price they're wanting for it. I know they're a business, but in america it's marketed at $269,000 per patient, per year, and the official results say it only shows a few % increase in lung function. dNase dose that at a fraction of the bloody price.

My lovely dietitian who helped me with all of this, and celebrated, and listened to me bitch about all things that weren't even food related, retired, so now I have another one, who is just as lovely, but last appointment, there was a new dietitian (I'm sure there's usually 2 on staff, so my old one must have been replaced) and I don't like her. I'm not particularly a fan of someone who finds it necessary to say 'poo' 5 times in 5 minutes. I couldn't care less if its her job to ask, at least the others aren't so obsessed with the word.

One last thing, as I'm sure he would be totally jealous if he didn't get a section seeing as I usually write about others. Pete passed away last month. It was strange, because its been expected, he had bad lungs in need of a tx that he had chosen not to go along with, and was in renal failure (and couldn't have survived a kidney tx with his lungs in the shape they were), and knew he didn't have forever. He was even spending his savings on stuff he'd always wanted because he knew there's no point in saving if you're not here to spend it all. But I did think he had a bit longer. I did expect him to at least see next year in. I've known him since I was 18, but in the last year or two we did drift hugely. We annoyed each other massively, and I don't know whether it was a [bad] talent, or he was doing it on purpose, but sometimes he knew exactly what to say... to piss me off. I'm easily pissed off I should mention, but he could be relentless! I think he got some sort of joy out of it though cos why else would someone be so persistent. So yeah we didn't speak much in the last months. Probably a choice of both of ours, and again, like others, we had drifted. But I knew him enough to remember he wasn't a huge fan of breathe easy (which irritated me so much when people posted it on his wall), he hated prayers, and once asked me, if anyone made a shit photoshop of him after he died, with effects and a tacky quote, to go batshit on them. I know people grieve in their own ways, and some people like to make them, but they're so horrible!

I'm still looking (and failing) for a job, which seems nigh on impossible. I'm applying for things with part time hours, but less than 20 - that's far too much to expect of myself all of a sudden. I'm thinking maybe 10 hours or so a week which would be do able, and there's loads of jobs that are only short hours or one day a week. I just cant seem to find any for me. I have skills and such, but i have no experience. And you need experience to get any sort of job these days. Most other jobs would involve things like working in a shop - i can't stand around all day (i can't stand for 5-10 minutes these days without my lower back hurting and making me feel like I'm 90) and I can't work at a till because if people spoke to me, for example, enquired about something, I probably wouldn't understand them enough. Honestly, if someone said 'Can I have a bag please?' I'd probably hear that wrong and just smile and nod... and not hand them a bag. People don't realise the extent of my hearing loss so suggestions aren't always very helpful, and when you say you're deaf, they probably assume deaf as in, hearing loss, but I have hearing loss and nerve damage, which makes for an entirely different picnic.

I really need to get out of the house though. I even watched 11 seasons of Greys Anatomy in a month and a half. I applied for an ebay specialist type job, 8 hours a week and good money (for the hours). I didn't even get an interview which pissed me off a treat - i know how to buy and sell on ebay, and did a lot of listing work in Oxfam which made me perfectly qualified. I emailed asking for 'feedback' for why I wasn't contacted, and so far all I got was 'I've forwarded your email onto the panel'. That was 2 weeks ago. The whole idea of email was fast communication!

That was al totally thrilling wasn't it! Sorry for the absolute novel. Each time I write I say to myself I'll get back into it but I can't really keep a promise like that, so I guess I'll just write a mammoth post every now and again!

1 comment:

Anonymous said...


Glad you posted again and let us know what you've been up to and good luck with the job hunt.

All the best,
Larry (GA)

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