Tuesday, 22 November 2016

Bye bye pred

I can finally wave goodbye to the little bugger that is prednisolone!

I've been on 10mg of pred every day since I was about 16, after a bad patch of pleurisy and also finding out my ABPA had come back to visit and sent my IgE levels to a ridiculous 2000 (they're meant to be below 500 from what I can find out). Because it was the allergic response to aspergilliousis, I was given pred rather than anti fungals. I'm not sure why, you'd have to ask my doctor, but I think it was more the allergy that needed treating as it can cause tonnes of lovely issues.

Anyway, it took years for my IgE to down to more acceptable levels, so I had to stay on 10mg long term. At the time, it also had added bonus of helping the pleurisy I had too, which, if I remember rightly, was an absolute bitch that hurt daily. Thankfully now its not as constant, but still there. When it's bad, I have to increase my pred to 30mg for 5 days, but also go to clinic for an xray as the pain is similar to a collapsed lung - they need to rule that out to be sure.

I've wanted off pred for ages, although I think its a mixture of hating the evil tablets that leave the most disgusting taste in your mouth if you're not quick enough when you're swallowing them, and also because I don't think they're doing what they should anymore. Pred has horrible side effects, and although its hardly a bad thing that I don't get them anymore, I also don't feel the benefits (I'm so used to side effects off various stuff that when the side effects stop, I can tell the medication has stopped being useful too). The side effects ranged from various stuff like moon face (thankfully I only ever had that when I was on 20/40mg alternate days for over a year), fluid retention, insomnia, constant hunger, mood swings (cheeky shites may comment that there is no difference...), poor bone density, bruising all the time, I could go on! I've also read that it breaks muscle down, and makes all your fat deposits go to areas like your tummy, it basically does the total opposite of what dodgy gym steroids do. Whenever someone would hear I'm on steroids they'd make a hulk like joke - sadly its useless! I think I've definitley noticed that, as I think its a factor in my slower than I'd like improvement in the gym. I can be stuck on the same level for months noticing no improvement on ease or stamina, and I'm sure that's because I'm trying to gain muscle on top of a medication that wants the opposite.

So I'm stable *knocks on every piece of wood in a 3 mile distance* which means my Dr thinks its perfectly fine for me to come off it, as the original need for it has cleared up and its not really needed for anything else. Plus it'll probably be better for my bones as my last bone scan came out as -1, and for someone who trips and walks into things on a daily basis, thin bones are not on my wish list.

It took a couple of weeks of taking 5mg and 10mg per day (which evened out as 7.5mg) then 5mg every day for two weeks, before I had a test done to check my cortisone levels. That involved a blood test, an injection of synacthen, another blood test 30 mins after that, then another, an hour after the injection. Thankfully my nurse brought me a proper cup of tea, as the test had to be done first thing in the morning, before I'd taken my steroids. I woke up so early I didn't even bother eating breakfast as the earlier I wake up, the more I cough, and just feel sick instead of wanting my usual bowl of coco pops.

The test came back fine (obviously) which meant I was actually fine to stop the 5mg a day completely after getting those results! I'm still on steroid inhalers, but I need to stay on those as they help with daily things.

It's been a very long 7 and a half years or so, but I'm finally freeeee! Out of all my meds, I really hated pred the most, and that seems to be echoed in a lot of other people's views too! However, I'm not adverse to a 5day course of 30mg if it helps whatever the problem is.

Friday, 21 October 2016


A month ago, we got back from an amazing 9 days in Orlando, Florida. The first proper holiday we've been on in 4 years, saving up for so long made it so worth it! And we spent every penny we took, which was the intention, I just didn't realise how much stuff would cost over there! Most of it went on food, and a few little souvenirs, but savings are made to be spent on something memorable so we don't regret a thing! This will be a pretty long post though...

Whilst the holiday itself was amazing, the journey there left something to be desired; After waking up at 3am for a 6am flight, it was delayed by a couple of hours, and once we did finally get on, it didn't leave for another hour and a half. This meant our other 2 flights had to be rearranged as we'd missed them. They sorted this, with a few bumps, and we basically ended up on the same route, just 3 hours behind.

Our last flight (JFK to orlando), or rather just JFK the airport, was a fucking shambles. When you require special assistance, even if that's just the lend of a wheelchair cos you can't walk the ridiculous distances, they basically push it for you, even if your other half is totally capable. Apparently we needed a taxi to take us to the other terminal as the airport was fucking huge. We waited 30 mins, for the taxi to get here (with a member of staff telling the other 2 couples that John and I were the first to get on as our plane left first), for everyone else to bundle in, the back two seats not be able to fold up into seats, and for the taxi to leave without us. The staff member then pointed us to the air bus... right across the street, and that would take us to the terminal (which it did, in 2 fucking minutes!) She took the wheelchair off us too though. We had to then stand for about 20 minutes through security (as i had no fucking wheelchair!) with unsympathetic staff who didn't care that our flight left 15 minutes. We managed to get into a slightly shorter line, only for some actual shockingly super obese lady, her daughter, and her accompanying special assistance staff member, to shove in front of us, and take decades of time to get her stuff through the scanner. John had pretty much given up any idea of making the last flight, and I walked ahead, out of breath, shins and back hurting from the walking, to get to the gate, which was typically, the furthest away, and once I was there, I may or may not have promptly burst into exhausted, frustrated tears when she said they hadn't shut it yet so we could still get on (they closed it right after we did, though!). That flight was a couple of hours long, we got our transfer (which took over an hour as the driver decided to drop off everyone else first, when our hotel was 20 mins from the airport), and got to the hotel, to be greeted with a massive rush of boiling humid air at 11pm.

Once checked in and in our hotel room, I shoved my Dnase into the fridge. It's meant to not be in room temp for more than 24 hours and it had been out for 25 due to the delays. I think it still worked well, my chest was a bit more chunky through the week but that may have been the humidity or something.

After all that wonderful excitement, we started our holiday properly! We had one empty day during the whole time, and in hindsight, it would have been smarter to have set that free day for the first day to sort out the jetlag, and the fact that i felt dizzy from the planes, hungry (and sick from hunger) from having eaten 2 meals since 3am uk time the previous day (getting to the hotel at about 4am uk time the next day), having had about 6 hours sleep in about 48 hours or so, and possibly having taken the wrong creon amount during one of those two meals as i felt bloated and sick, which is how i feel when i don't take enough. Regardless, we started our two days at universal, and they were amazing! We had 2 day, 2 park tickets, with a quick queue ticket which came in part with staying at the on site hotels, and a special Gold pass, from the charity who gave us the park tickets, which allowed us to skip the queues in places where the quick queue didn't work (mainly meant going the long way to the rides which was useful as the wheelchair we had to hire due to the distance I'd have had to walk, as well as the heat, wouldn't always fit round the queue lines very well).

John went on everything, and i went on anything that didn't give me horrible vertigo (due to my whacked out balance and hearing problems, on top of the fact i already felt sick). I went on one 4D ride and nearly threw up, which was saying something as they're the ones where your chair just moves about while you watch a 3d film. I had to skip most roller coasters (i went on a couple, and quickly found out that barrel rolls and loops do nothing for the vertigo) but i did go on a few mini roller coasters and some that were kind of 4D but not as bad, like gringrotts, spiderman, transformers etc (they were pretty good fun but i'm also a wuss meaning if i didn't have vertigo i wouldn't have been able to go on the huge roller coasters like Rip Ride Rocket and the Hulk anyway)

We had a list of rides we'd made from looking on the website, which basically skipped the kiddy rides, and I'm really pleased we did everything we aimed to. The quick queue certainly helped though as some rides had really long queues. On rides where we weren't sure if they spun or rolled, john would go on first, and tell me what it was like so i could decide. We also went on the water rides, and because it was about 30+*C, we dried out quick too!

After those two days, we went to Busch Gardens, Sea World, the Kennedy Space Centre, and Aquatica. I don't have many photos at all, a combo of mostly being on rides (or waiting for john to finish his ride) and having a shit camera. I couldn't take my Nikon D3 due to the weight and its value, so borrowed an old bridge camera, which was blurry, terrible low light, out of focus a fair few times and took 3 seconds to take a photo (meaning i missed a few things i had a second to capture). About 2 thirds of the photos i took were blurry or hard to see due to the bad lighting. A bit annoying when i realised my dad was genuine when he asked if i wanted to take his canon IXUS which takes amazing photos, and its a pocket sized camera too.

There were a lot of roller coasters in busch gardens and sea world, and john went on most unless they were shut. I went on this insane green roller coaster in busch gardens which was the kind which speeds up as it goes upwards, and I tolerated that one fine considering there was one barrel roll. I'm glad i at least went on a couple as i used to love roller coasters but now they scare the living daylights out of me. I'm scared of heights so any vertical drops have me bricking it just looking at them. There was one insane looking coaster at either sea world or busch gardens, and i was going to go on it until i saw it had a vertical drop, and got myself in such a panic i just sat and watched in horror as john got on and came off a few minutes later grinning like mad.

We also decided to go to Halloween horror. It cost a lot but it was so worth it. We managed to get another gold pass (which are impossible to get unless you have someone helping) as ours was only good for the two days we were at the park originally, and i think the only reason they gave us it was because we already had one. John over heard three people come in and ask for one while we were at the desk, and they were all turned away. The quick queue for HHN was about $80 per person, per night, and the hotel one didn't count for it. The queues for the horror houses were up to 2 hrs long and there was no way I'd have managed that. We still had the wheelchair but even sitting in it gets uncomfortable, and there was various people smoking all over, as they apparently seemed to think that if it was dark, you didn't have to go in the smoking areas.

We went to halloween horror three times (its only open certain nights but our ticket was valid for about 21 dates - its expensive but if you're around for that long its pretty damn good value) and there were also several rides open during it, but with much shorter queues. I think John went on the Rip Ride Rockit rollercoaster about 5 or 6 times, and we went on the mummy and the gringrotts ride several times too.

On our last day, we'd been to Aquatica, but weren't there all day due to the fact that neither of us liked the slides where you didn't have a ring - you felt each join in the tube with your spine and fuck me that hurt something rotten! There was also a thunderstorm coming which meant lots of things had to shut. The same thing happened the previous two days, and the rollercoasters, and various other stuff, will stop if the thunder and lightening is less than 5 or 10 miles away. A lot of the time a massive rainstorm followed which meant most people weren't exactly about to go on a coaster anyway.

That evening we went for a meal at hard rock cafe. It was pretty pricey but worth it for our last night. We decided to walk back to the hotel rather than take the boat that went back and forth every 10-15 mins, and I simply thought John suggested it cos he didn't fancy waiting. There was a tiny beach on the walk back next to the pool (although that was shut as it was 10pm) and john suggested we stop and sit on the loungers. Again, i thought he was just making sure i wasn't getting too worn out. I was sitting in front of him, admiring the view, and he pulled out a ring and put it in my hand!

I may have not put two and two together (something in me didn't want to presume as we've always said we'd want to get married but i wasn't expecting anything just yet!) so I turned around and John asked me to marry him :)

It turned out that when we went to my parents the night before we left (at his suggestion but i thought that was a simple popping over to say hello before we go on holiday kind of thing) he asked my dad for permission which i think is very sweet - of course my dad didn't mind at all as my parents love john and get on with him brilliantly. He told my mam after we'd left, and other than them, the only other people to know were johns parents.

We've been together 5 years and lived together for over 2 and a half, so people have been asking and asking when he would propose. I'm glad he waited till he wanted to and didn't feel pressure, and now people can finally stop bugging us (but the 'when will the wedding be' questions have only just started!)

We came home on a bit of a high the next day, with no problems thankfully, although it was weird at first settling back into regular life, and yes, I've already started gathering wedding plans! We don't want to be a 'get engaged and just stay engaged forever' couple as everyone loves a good wedding. Just kind of hoping for a small windfall to pay for it ;)

Health wise, I'm quite well! I went 4 months between my last ivs before needing them in prep for holiday, and I'm about 6 or 7 weeks out of those and coughing a bit, but i think its the sudden temp change as england seems to think its migrating up towards the north pole.

More photos if you made it this far! Sorry it was so long!

Saturday, 3 September 2016

Holiday excitement

So i turned 25! I feel so old considering I still regularly pass for 15. I know, I always get the 'you'll be grateful when you're older' comments too but they do get boring after a while. Sort of like the 'wow you must rattle' comments when people hear how many tablets you take a day.

Speaking of tablets, I'm 4 days away from finishing my holiday prep IVs and I've started packing up for holiday (10 days!!!) and even though I don't take a serious amount of stuff (I think I'm probably mid way, i do take plenty but i don't take as much as some of my other CF friends) my suitcase appears to be 3/4 full of meds. I'm only taking a cabin bag and an extra carry on, I get far too worried about putting things in the hold. But what really got me is that when I asked someone on british airways twitter account about possibly having an extra carry on just for meds - and what i got in reply was "oh don't worry, we have quite the generous carry on allowances"- even AFTER she asked me to list everything I'm taking! Which, if you were wondering, goes as follows:

9 x dnase
9 x saline for neb
eflow (with plug and batteries)
eflow mouthpiece
tobi pod
9x days of orkambi (36 tabs)
3 x pots of creon (I'm so glad i only take around 5-7 for a meal!)
antisickness (taking 9, enough for one a day, as they also help with some reflux)
salt tablets (at least 3 a day, maybe more)
symbicort inhaler
ventolin inhaler
Spirivia inhaler
9 x calogen shots
fluxclox (72 caps. I know, its loads. Blame my doctor)
omeprazole (18 caps)
urso (18 caps)
Vit A+D (18 caps)
Vit E (9 caps)
Vit D3 (1)
pred (18 tabs)
Azithromycin (4 tabs)

overall: thats 510 or so tablets, 18 neb doses, 9 supplement drinks, a nebuliser with the essential bits and 4 inhalers. For 9 days.

I'm pretty sure thats all. Oh and by the way I'm also meant to be able to fit everything else! Like toiletries, clothes, my camera, phone charger, sunglasses, all the documents etc. The bright side is that coming back I'll have loads of space! I'm taking everything in the original boxes as that should be easiest, along with a letter from my cons. I'll be putting everything in the dossett box when I'm there, but don't want to travel with them in the box already as a, if it opens then thats just too upsetting to even consider - its bad enough when you spend ages decanting it all, and knock it over on a table in the process of shutting the lid. Also, some airports may not be too happy about it - considering I'll be going through 5 overall (including arrival) just on the way there, 3 of which are in america.

I promise to put up a long picture-esque post when we're back. I'm hoping to get at least one good one of me and john as that was all the charities asked for in return (you know, the CF charities that give you money specifically for your holiday)

I really hope the pictures turn out okay too - I wont be taking my fancy pants DSLR as it weighs a tonne and is also very expensive. We do have insurance that covers that but its just too risky for us. So Im taking an unused bridge camera from John's mum, which I've tried a few times and its okay, just so odd not being able to control as much as you can on the D90!

Hope everyone's had a lovely summer! I actually got a bit of a shock to realise kids were going back to school next week!

Saturday, 30 July 2016

Hit or miss

I have a hit and miss record of whether or not I get on with medical professionals. When I was 11, I was admitted into hospital, and I vaguely remember having a ward round with my consultants, several other clinic members and what seemed to be every fellow and junior doctor in the hospital (this may not be accurate, I just remember being absolutely surrounded in my little hospital bed). A female fellow was told to give me an examination and I said 'NO! Not her! I don't like her'. This was met with several surprised faces and glances (it still bothers me to this day, as coincidentally, I think she was muslim and I always worry I came off really racist!) The actual fact was, I'd seen this doctor several times in clinic, I'm pretty positive she was particularly bad at blood takes, and she always generally ignored me and spoke to my parents. This wasn't new. But I remember my dad telling me he was irked by her because they were always rang up with sputum or blood results a few days after they'd been taken, and whenever she was the doctor in clinic, no one ever rang us up. It may be a petty reason for an 11yr old to dislike someone, but, i was 11.

Yesterday I was putting a clinic letter away and decided to read some old letters instead. I found one from this fellow which said things like my hearing loss wasn't due to aminoglycides (er, yes it was) and that I could be particularly difficult in clinic (how would you know? You ignored me the entire time!) I guess my hatred for her wasn't for nothing then if she was bad mouthing me in letters to my GP.

Another time when I was a teenager (must have been 14 or so as I read this in a diary) I was sitting in a side room to get my port flushed, and the CF nurse suddenly started on me saying that I seemed miserable and grumpy. I just remember feeling really pissed off at that comment as I'd been there all of 5 minutes, barely said anything, hadn't been rude or short with her and she'd made me take my top off to get to my port - I wasn't wearing anything underneath and felt self conscious and awkward, so if she was basing my 'grumpiness' on this, that wasn't fair. You try taking your top off in front of 4 other people, I know they're nurses and parents so they'll not be bothered, but it doesn't change your personal self consciousness feeling.

One letter I found, considering there wasn't many from paediatrics, this one has pissed me off a HUGE treat. I was about 16 at this point, getting sarky and pissy with doctors who spoke about you to your parents, shoved you in the corner with a games console and discussed your life without you being allowed any input. (This would often end up with things like IVs being scheduled on the one Friday which was a pain in my arse as I wanted to go to a friends house or a party that Friday or Saturday, and once I realised the date clash, they refused to budge even one weekend) Anyhoo, so this letter was to my first consultant in adults, and was about an impending transition clinic. He outlined some basic health (I find it interesting they said I was one of the patients with severe lung disease when I'm actually still pretty decent now nearly 9 years later) and then, decided to say that he didn't think that my hearing issues were because I'm deaf. He said he thought I had a processing issue.

Now you could argue he may have meant the nerve damage - I don't seem to process noise into actual speech and sounds, it's literally just noise and I need to lipread to understand. However, he followed this up with 'because she's always been strange with everyone in clinic and would probably benefit seeing the psychologist due to this behaviour'

I read this yesterday and swore loudly. Its been sitting in my file for years and I've never read all these letters cover to cover. But I am fuming at that. This doctor gave me tobramycin which made me deaf - confirmed with rapidly decreasing hearing tests and the diagnosis of aminoglycide hearing loss and damage then confirmed by a very good ENT surgeon. But according to this moron of a doctor, he seemed to think that my hearing wasn't an issue and I had some sort of brain problem, maybe? My 'attitude' (which i was constantly told off about when I was a teenager, cos guess what? I was a fucking teenager) was pretty normal for a stroppy teen, and mostly in clinic, I'd ignore the doctors because they ignored me. I'd get pissed off with plans made about my life without me even being told about them, and they never, ever asked for any input from me, about my life. I'd then get told I'm stroppy or grumpy, but what do you expect? They were never nice, they never really smiled, or made you laugh or praised you when you kept your weight up. Clinics would be long and gruelling and I've always been the type that gets very 'hangry' - starving and very very angry. I found a lot of irony once in my mum asking the dietitian if they could hurry the clinic up because I was getting hungry, and the dietitian, who had just been telling them that I needed to gain weight, said 'oh well we're all a bit hungry aren't we'.

I don't like the paediatric team and the more I read about my past treatment, I hate them more. I apparently trialled DNASE when I was younger, but didn't feel it made any difference so they stopped it (the one fucking time they asked my opinion and it probably wasn't a very good one!) According to a fellow who summed my notes up for another doctor in a letter, my dad asked them repeatedly to let me try it again and they never did. I started it this year a couple of months ago now, and have felt massively different, my lung function went up a chunk after starting it and my chest feels clearer. I can tell this difference because I pay attention to the numbers now (i didn't when I was a kid) and my chest has gotten worse over time so i can personally tell a difference when a medication works or when I have an infection. As a kid, I don't think I really noticed a difference other than if my cough got bad. I'm now wondering if I had the idea of DNASE explained wrong which is why I didn't feel it helped. Fuck knows why they didn't put me back on it though as it seems almost mandatory that people with CF have it now.

But basically, I cannot get over that bastard cunt of a doctor saying that basically i have mental or behavioural issues and that's why I could be a little sod. Doctors and nurses who can't understand normal teenage behaviour probably shouldn't be working in paediatrics.

As far as I know, that doctor has since retired, but I wish I could see him now and show him that this girl with 'processing issues' managed to get through all of school, 2 college courses and a uni degree. I do have hearing problems, and I do need allowances for that, but that is not cause for him to write what he did. I know I shouldn't dwell on it as it doesn't matter now, but I think the basic indignity of someone knowing so little about someone they treated for a decade or longer, shouldn't have written bollocks like that.

I also wish I could say that things changed in adults, but they didn't. I no longer get along with my original doctor from adults, I don't agree with him on many things (like when he gave me muscle painkillers for constant headaches due to low sats, or 3 years ago when he spent half an hour telling me 'at this rate of decline' i would need a tx in 6 years, when all I wanted was some IVs. My lung function is now higher than it was then. Twat). There was another doctor who I saw only once, but I remember telling him that I couldn't understand him as he was mumbling. He took this as to get out from the desk chair, kneel in front of me, lean forward and speak to me like I was a severely mentally ill person. Me and my dad just stared at him in absolute disgust. I can't remember what else was said but I do remember thinking how easily it would have been to kick him in the face.

There is one nurse who speaks to me like that in clinic, but thankfully I haven't seen her for a while. She always seems to be doing paperwork in a room rather than seeing patients. There is another who also can't seem to understand I'm deaf despite being told at every appointment for years now. She seems to think I'm a bit special though as she's always asking why my dad/sister/boyfriend aren't with me if I've come alone. Aside from the fact that my dad let me start going on my own from when I was about 19, unless I asked him to go with me, and my sister stopped going with me when I moved out my parents house over 2 years ago.

There is another CF cons who I don't see, but he doesn't have many CF patients as I'm pretty sure he sees other general resp patients and is often running up to HDU for patients up there, if he's not putting a port in. I was speaking/arguing with a doctor I only saw a handful of times, and I was getting my routine IVs which I always had twice a day (unless its a specific drug which the dosage can't be increased). Anyway she was trying to give me them 3 times a day, and i'd finally gotten used to the 2x a day that clinic usually gave me. This caused her to leave the room, return with this other Cons, and have him read me the riot act on why I need IVs and why they're so important. After about 10 minutes of this, I wasn't paying attention as he was speaking too fast and has a huge moustache and beard that covers too much of his mouth to lipread well. Someone finally pointed out that I wasn't actually refusing IVs (I'd asked for them...) but I wanted them 2x a day instead of the 3x a day that the younger doctor wanted to give me. This was followed with an '...oh' and then a sudden subject change of how school was going. He then wrote 2 pages in my notes saying I was refusing IVs, being rude and argumentative, and eventually agreed to have them.


I generally get on with most people in adults now though. Up until a new dietitian swanned in late last year after my lovely dietitian retired. Thankfully there's 2, and I get on with the other, but the new one is a pain in my arse, and she should bloody well know it by now. The first time I saw her, I swear, she said the word 'poo' 5 times in the 5 minutes she saw me. That annoyed me as I felt like she was either obsessed with the word or she was talking to a 5 yr old. When I was ill, in and out of hospital with odd gaviscon side effects in Feb, she said that if I 'calmed down' my 120 resting heart rate would be fine and i was imagining the palpitations. She said there was no problem in my losing 5kg in two weeks. She walked in on me throwing up the chocolate roll I'd managed to eat, and saw no problem. She decided to 'help' by bringing me toast that I'd agreed to try. She brought it in stone cold and burnt black, and walked out smiling. I did ask if NG or NJ tube feeding was a temporary suggestion for the fact that i wasn't eating more than 2 or 3 small bites of food per meal. She said 'NO! we won't do that' and promptly walked out the room. When I asked for calogen shots, as no one had given me any supplements the entire time I'd been in, she waved my request off saying 'they're on the ward somewhere' (I'm not allowed to go rutting through cupboards!) and walked away. When the HCA found them the next day, they weren't calogen, which I'd asked for due to a specific high fat content, but something with much lower fat. And they were warm cos they'd been in the cupboard and not the fridge. I'm also really annoyed that no one (especially her, as she is the fucking dietitian!) did anything or even monitored the amount of food I (wasn't) eating. It's surely quite dangerous to leave someone only managing to eat 2, maybe 3 small bites of food per meal and not really give a shit. Especially when its combined with rapidly dropping weight.

The last time I saw this twatty excuse of a dietitian, I told her that my problems had been due to gaviscon, and she smirked at me and shrugged this off. I then got very angry at her and told her she needed to move her hand from her mouth because, as I'd told her multiple times before, I'm deaf and I lipread. I haven't seen her since - my nice dietitian wasn't in clinic on Wednesday so I told my CF nurse and my cons that I refuse to see this woman who's name I don't know and don't plan on learning. She would have happily watched me starve to death so I won't speak to her. The other dietitian is also happy with this and doesn't mind being the only one to see me, or me not seeing any dietitian if she's not available as my weights now good and the best it's been.

Maybe I just get shit health professionals as honestly, some of my so called attitude isn't exactly uncalled for!

Wednesday, 29 June 2016

You can't please everyone

I am not happy. Last night , before I went to bed, I checked my emails, as you do. I saw I had a comment on my last blog post. I probably should have ignored it, but as I was basically called a hypocrite, I felt the need to clarify a few points. It went as follows...

"You totally contradicted yourself "in the case of those with CF who can work and aren't restricted, sitting on their arse claiming they can't work cos they may get ill".You're well enough to go the gym 3 times a week yet you got money from 2 CF charities to go on holiday hmm maybe pot calling the kettle black comes to mind."

You absolute moron, you have no idea do you? First, yes, I go to the gym three times a week. This amounts to between 2 1/2 and 3 hours. Show me a job that is 3 hours long that gives me full pay! Seriously! Secondly, I struggle with the gym every time. I openly admit that. I can't keep up with everyone and when something calls for 3 rounds of x amount of reps, I struggle by the second and usually stop by the 3rd. My head is pounding, I'm having a coughing fit and I'm aching all over. More to the point, its a vital part of my CF treatment that I do exercise. I'm fully encouraged to do whatever I can, and if you can get the gym, then brilliant, cos that place has everything you need. (I also really don't pay much for my membership. Given that it went via a gp referral and then its half price on top of that due to being on certain benefits, its £15 a month).

My comments/rants about those who sit on their arse are directed at a certain type of people with cf. I in no way tar everyone with the same brush. It was directed at those who have amazing lung function (100% or higher meaning their lung function is better than the average healthy person!) who don't have IVs, who don't suffer fatigue and pains, and who CAN do things, but chose not to, using CF as an excuse. These are the ones who say "cf means I can't work" "I can't exercise because I have CF", and my personal favourite "because I have CF I should get ALL the benefits" I don't claim anything I'm not entitled to, and I don't get much, but we manage. Some people with CF think CF equals an automatic entitlement to DLA, for example. Well certainly DLA was originally for the costs that occur with your illness, like extra food, needing extra heating, fuel for constant hospital trips, but again, these people don't need any of that. They literally don't qualify as they aren't considered ill enough, don't struggle walking and don't need help with any of their care.

I have worked. Ive had three jobs which were all pretty pathetic and short lived. My main reason for stopping looking for work is because my lung function has a habit of dropping up to 25% in a short amount of time when I'm ill, and I really bloody feel it. I started going to the gym, not only to increase my lung function, but also to try and stabilise the sudden drops. It's better than it was (due to exercise which I have to keep up whether I have a job or not... bare in mind I struggle with the energy to attend or keep up with these 3 gym classes in the first place) It dropped 15% in December and then another 5% in January. That was due to infection. Thankfully because I don't get complacent with a sudden drop, I keep the exercise up and my lung function recovers - something I probably wouldn't have the energy to do if I was working. I also have IVs between every 2 weeks and 2 months. This would hugely affect my ability to do many jobs as a lot of employers don't like you to go in with a massive needle in your chest. Not to even mention how messed up IVs make you feel.

Finally, don't you dare mention that money for the holidays. It has nothing to do with my lung function, and you have no idea about my financial situation. And I'll tell you it isn't always great. My boyfriend works full time and gets paid by the hour. He picks up as much over time as he can. He gets working tax credits because, guess what, we have a low income. I get DLA which mostly goes on food and fuel. We don't get help with council tax and we barely get any housing benefit as it basically gets replaced as the working tax credits. All of that doesn't actually add up to a lot, but we manage to pay all our bills and rent and buy food with it. We also had enough left to put a small amount into saving every month because we're sensible with our money. However, when money times get difficult, the money we've put in will slowly be taken out. It does get replaced, but those months where we were taking the money out doesn't get added to, so the money sort of just stays static in the end. To get the money which was GIVEN to me from those charities, which I applied to with full disclosure I was applying to the other one, I had to show I was on a low income - lower than the basic standard of living that the government says you should live on.

Also, more to the point, given my limited options for work, finding something I can do, that I'm qualified for, and that is no more than the hours I can work, is pretty damn difficult. My hearing is a huge factor here and had I not become deaf, I expect that I would have a job if I was in the same position with my lungs now. I could have a job sitting at a desk talking on the phone. Something that doesn't involve running around, lifting things, standing for long periods of time, but I wouldn't have to worry about the hearing so that would open a lot more jobs up. Fuck, I can't even get a retail job sitting at the till as they all seem to use headsets and walkie talkies now. Not to mention the fact that I'd never be able to hold a conversation with anyone I don't know. There's also the fact I've been on steroids for about 7 years now, they affect your immune system and I'd probably pick up every cold going, which I can never shake off and always ends up with IVs.

I am so angry you left that uneducated, passing comment on a blog I doubt you've read before. I should have ignored it, but you saying that I can work, but don't bother, and that I shouldn't have been given any money for a holiday we can't otherwise afford (and probably won't ever again) is horrible.

Thursday, 16 June 2016

How long has it been this time? 3 1/2 months isn't bad going in comparison to previous attempts! How odd how I used to update this weekly and now I either can't be bothered or don't really think this is the audience for my thrilling tales of failing to finish my 4th cup of tea of the day as I have the attention span of a gnat or how shit amazon tv and netflix uk is recently. At least for a good old series you could get stuck in.

I still haven't done much these days. I couldn't even stick with my attempt to re-watch my Scrubs boxset cos it wasn't even that long ago that I finished watching it. I have a shocking amount of boxsets of tv shows sitting in my amazon wish list that just keeps growing as even though more than half the shows have finished (some even before this decade!) they still cost a frigging fortune. (More annoyingly, half of them I want to watch are on Netflix USA but you can't use things to trick your browser anymore cos they can catch you and get you into a fuckload of trouble).

Anyway. It's mid July, which means, according to my countdown app on the screen of my phone (which certain people think is sad but you get entertained by very little when you're bored shitless) there's 89 days till we go on holiday. I'm not sure if I've mentioned it before, if I have, you get to read about it again cos I'm exceedingly giddy. We're going to universal studios in Florida in September for 8 nights - we've saved up loads, applied to a couple of CF charities (one was a local CF charity that was closing after 10 years so we applied and they sent us a cheque, with a request of a photo in return of us on holiday, the other was the CF holiday fund, who also got some tickets to some parks through their contacts, which has helped the cost hugely). Parents have chipped in too and birthday and christmas money was earmarked for the holiday. It's costing a fortune and it'll probably be something we can only do once, unless we randomly had a huge sum of money fall in front of us. One of the more annoying things in being an adult is how centred around money life can get, and how stressful it is. Especially when one of you can't work.

In terms of jobs, I've stopped looking for now. I've spent years searching and applying for anything within the hours I can do, that doesn't involve relying on hearing and doesn't look too exhausting, but I've never even gotten past applying. So much for 'if you meet the minimum requirements they're required to give you an interview if you're disabled'. Instead, I do what I can to keep myself busy, I don't have a lot of friends and get cancelled on more than is strictly necessary, to be perfectly honest, other than my boyfriend I seem to spend most time with his family, as they're always around to pop in. Not the average life of a 24 year old. I go to the gym 3 times a week which I think helps my health loads, and that's important. One thing I was worried about if I did have a job was that something would probably suffer - the stuff I do around the house, maybe the job itself, or my health, and none of those things are worth letting slide if you can't do it properly. My health, for the obvious reasons, a job, because whats the point in applying for it if you can't do it, and the stuff I do around the house, cos if I let the place get into a mess it would probably have a massive negative affect on my general mental wellbeing. I find it hard to be comfortable and happy in a place that's messy and falling apart, so I like it tidy.

Actually in a couple of months I'll be 25 and that's an odd thought! I don't think I'll do anything for it - I didn't last year and my friends didn't actually notice which is nice... but I don't want to plan something for it to go out the window or look forward to it for everyone to cancel or just not turn up. It makes you feel like shit. I think that's one reason why I actually wanted a job - other than it would have been nice to be able to feel like I'm contributing to money for bills and such, it would have been nice to have someone to chat to or even make friends so you have someone you can meet up with outside of work too. Because I had an appalling time at college and I've never had a proper job, the only friends I have are from school, and everyone else is a friend of someone else.

On the positives, I'm glad I've moved out and I'm living with my boyfriend (2 years ago last Feb and I haven't burnt the house down!), makes me feel somewhat adult! I don't want to be one of those people who are 30, single, living with their parents and sitting on their arse claiming job seekers, or in the case of those with CF who can work and aren't restricted, sitting on their arse claiming they can't work cos they may get ill.

Actually that's something that's been pissing me off a treat - I work hard at the gym, and even if I feel like crap I do what I can. I had a gym class last night and for some reason kept having coughing fits at the slightest movement, rather than after having put work in to warrant it. But a coughing fit doesn't mean I give up and walk out. I'll catch my breath and join in again and do what I can. It irritates me no end when I see those with CF who claim they can't do exercise - yes you can! "But I cough loads and get out of breath" That's the bloody point! It counts as physio, and more importantly, you can get out of breath and it be nothing to do with CF, you're probably unfit as you just insist you can't do anything. The only way to know is if you stick at it and compare yourself later on, and see if you still get out of breath at the same time. If you do, then yeah you can say its cos of CF but at that point all those days/weeks of exercise have probably done your lungs a good benefit already. People who make excuses are starting to really rile me up. They'll throw lung function numbers around like its meant to stop you in your tracks, but the truth is, numbers don't matter. I know people with numbers at opposite ends of a spectrum and matched in terms of exercise tolerance, or the person with lower numbers doing better than the one with the lung function of a perfectly healthy person.

Right well that's my rant over. But honestly, get off your arse. Your sofa and the dent you're probably making in it will thank you at the very least.

Friday, 4 March 2016

I do believe I jinxed myself (again).

For anyone who read that last post about the stomach pain I had that had me back and forth to the hospital. I've cracked it now, for the most part. I think it was reflux, at least partly, and I've figured out that endless hunger I had the day before the pain started was actually excess reflux (which would have certainly explained the pain if it was reflux related) but because I've never had it like that before, I had no idea what it was. I've had it since, and an antisickness took care of it, as it empties your stomach and with it, the acid. It's a horrible feeling though; sort of like when you haven't eaten all day and are raving hungry, but also feel sick, and a sort of rumbly worried feeling. Makes it hard to find out the cause.

So anyway, they'd given me gaviscon for the reflux, to go on top of the omeprazole I take every day. It was probably the easiest thing to give me but i certainly haven't maxed out reflux meds so I don't know why another tablet wasn't offered instead. I figured the high heart rate I was having and the off feeling was simply just the reflux or maybe even orkambi withdrawal, seeing as all of this started just days after coming off a drug I'd been on for 2 1/2 years.

The next several weeks were horrific. All of a sudden on Saturday a week after coming home from my 2nd admission, my appetite went, and I felt odd. I was tired and my heart was beating faster than my usual resting heart rate was and it was beating so hard it was basically like having constant palpitations - like when you've been running around and you're out of breath and you can feel your heart hammering away for a minute until it settles. Except this never let up. It also make me feel horrifically sick. By Sunday, I still wasn't able to eat more than bites at a time for a meal. I was beyond hungry but couldn't stomach food. Sunday night, we decided to go to hospital. My doctor was off paternity leave the next day and being at home was just making me panic, so i figured if i was admitted, i might see him first thing.

I had to go through Emergency Admissions Unit as there were no beds on the ward. I hate EAU, because when you have a specific illness, its such a pain in the arse. They're not specialists, they're general doctors and nurses who don't have a clue about CF, so they bring you your creon with your morning meds (when you haven't eaten) and the doctor tells you to breathe in deeper when listening to your chest, not realising you've got half the lung function someone else your age and height normally has. Also, having been on a research trial, no one knew what I was on about when I said 'orkambi' and the junior doctors weren't half faffing on with my boxes of it, despite the fact it says nothing helpful on there. I even had the ultimate annoyance of an F1 leaving a cannula in my arm over night after taking bloods 'in case we need more'. They didn't and I was very pissed off as he left it in my one good vein. That vein doesn't mind being stabbed multiple times, but leaving a cannula in could have fucked it quite nicely. Luckily it didn't but I had a go at anyone who walked into my room to make them take it out or else I would. I had an xray and a quick ECG that night too (my palpitations had calmed down typically but they never seem to show anything which was more infuriating) and I also ended up on O2 at some point during the night.

I eventually got a bed in the afternoon on my ward and then saw my consultant about 7pm that night (I imagine having been off for a couple of weeks, he had a right workload to return to, hence not seeing him earlier). He had no idea what the problem was, and we were going to talk about it more at my research appointment the next day (bless my research nurse, every time I've been admitted she's come to find me and have a chat and see whats up). So I went along to research, both my nurse and my cons couldn't figure out the problem but also didn't think it was because of orkambi but also had no idea what else it could be.

In total I spent 6 days in hospital this time. I wasn't eating, in fact, some days seemed to get even worse. Each time I felt a bit better and then got worse again, it was quite petrifying as i had no idea how long it would last or if it would even go away. The only thing we tried was anti anxiety meds one night, which just knocked me out. I was also on IVs but I was due them anyway, which i think may have explained the sats, but i also blame my heart beating bout 30-40 beats faster per minute than it usually does. It was a bit annoying they didn't do anything else. The dietitian didn't help as she said they don't give you temporary NG tubes just cos you haven't eaten for a week (don't mind me, the weights just falling off at an alarming rate but sure i won't give you anything else to bloody help) and her idea of helping was to give me some toast when i said I'd try some, but she came back with something that was stone cold and cremated. The HCAs could make perfect toast so i don't know why this woman decided to crank the toaster up to the max level then give it to me.

The whole time, staff from clinic were coming up to chat but mostly just to try and get me to agree to go on Orkambi. My doctor initially thought this was me 'going back to how I was' which i debunked, as I've never had a fast heart rate, a complete and utter loss of appetite like I had, nor palpitations that lasted for hours and were so strong you could see my clothes twitching. However, going back on orkambi was their only idea. By Thursday I was exhausted and pissed off. I agreed to go back on it when my doctor came in to drop off my CF holiday fund medical form - which we applied to for some extra money towards Orlando, as its such an expensive, and probably once in a lifetime holiday for us.

I went back on Orkambi on Friday, and oddly felt better by the evening. Which made me think even harder that it must have been withdrawal. I went home, and after some colossal fuck up with my IV deliveries, settled back to normal. I didn't feel 100% in the slightest, but felt a damn sight better than I had been. About a week later though at the weekend, i started feeling shit again. The palpitations returned, with dizziness this time. I'd still been tired all week and had still felt quite sick so that wasn't new, but it did seem to intensify. Then the following thursday, by the evening I felt like me again. It was quite bizarre, I'd spent the evening organising my craft stuff on my new desk we've put in the conservatory, and everything seemed normal. I was a bit off on Friday and needed a lift to clinic, as I was still too dizzy to drive, and I'd been thinking all thursday and friday morning, with help from my little sister who'd said the day before "Is there anything new you've been taking?"

I couldn't think of anything new. I was sure there hadn't been. Then i realised the only new thing, that I was still taking, was gaviscon. The palpitations and sickness only started after I'd been given my first lot, the first admission I had. I hadn't taken it for a few days in hospital (I had one 10ml syringe of it a couple of days into the stay) and improved after a few days of not touching the stuff. I had some at home so continued taking it then (which explains why the problems never totally cleared up and then returned in full) and then for some reason i'd not taken any for a few days before the Thursday when I felt better. I looked up the side effects. Under the more rare side effects it included loss of appetite, unusual tiredness and muscle weakness as a sign of low phosphate. Rarer side effects (which are also 'tell your doctor immediately types) included irregular heartbeat, dizziness and trouble breathing.

Obviously the side effect list was longer but I had all of these. To be fair, my symptoms were vague and could have been anything - I had a GP appt and my cons had said to check my thyroid which turned out to be perfect, but my infection levels were 20 (12 and below is fine) which made me snort when the GP phoned us for me to come in that afternoon to discuss the possible infection. When I explained I'd just finished IVs and have Pseudo in my lungs, she seemed much happier with leaving it thankfully.

Most people at clinic seemed happy with my theory, or at least happy to send me home to see if I continue to improve. At least at that point I was eating again and my heart rate was going more back to normal, so there wasn't really a need to re-admit me or anything thankfully. I really dislike the dietitian though. I asked why I wasn't given an NG when I wasn't eating and wasn't showing signs of improvement (the only time I ate more than 1-2 bites of a meal was after I'd been discharged) and she just said they 'dont do that'. My weight is still okay - 47.7kg which means I'd lost about 4kg in the last few weeks, but that wasn't enough to get a reaction out of her or for her to stop mumbling and putting her hand over her mouth. I'm seriously going to ask the other dietitian (thankfully theres only 2 on the team) if I can only see her and not little miss mumbles.

Since clinic last week, I've continued to improve and now I'd say I'm 99% back to normal. I still feel a bit sick if I eat too quick or too many sweets, but i'm more focusing on the fact I can actually eat now! And I can finish a cup of tea too - for some reason I couldn't even stomach tea when I was ill so that made me realise I'd only know i was okay when I could drink it and be fine.

So 6 weeks of hell, most of it from some ridiculous pink goo, is now behind me. I still get a slight wave of worry when my heart beats faster for no reason, and I have to keep checking that my pulse is normal if i think i can feel palpitations - most of the time its in my head but I had them so constantly for weeks that i got used to feeling them so keep imagining them still there. I had some CF friends keep me virtual company with messages and checking on me. And my immediate family - parents and sisters, my boyfriend and his mum were all lovely and gave me lifts, looked after me etc. I just still feel so jipped off that no other friends really gave a shit. I was genuinely terrified and half wondered if i was either gonna have a heart attack, puke my heart up, or have something horribly wrong with me, and even after 3 admissions, I don't even get a text, or a comment on facebook. All the time I see people complaining they're lonely or they're ill and they have people rush over to help. I feel like the few people I call friends have really let me down and I'm not sure what I did to deserve to be cared about so little. Its a shame as it makes me so bitter. I know people have lives and they get wrapped up in them, but I thought 'hospital admission and mystery symptoms' would be enough to get a small response - even after asking people to visit. Sucks.

I also have to have a heart tracer done to make sure there's no issue, although that was mostly for the palpitations which have stopped now. It took so long to get the appointment, I have one for my local hospital in mid april, and my cons put a request in for one at that hospital as the list should be shorter, but i'm mostly wondering if its redundant now. I also have my gastroscopy this month, also a bit pointless as the stomach pain went away but we agreed I should have it anyway just in case the pain was caused by something else. What I really need is a 24hr PH test to make sure I'm not aspirating into my lungs, I'm not sure the dietitian was actually listening though, she looked more amused. I think she's new to dealing with CF patients and having them actually know what they need.

Things I do to keep myself busy after 6am IVs. "rest" doesn't happen in hosp.


my new craft room!

Saturday, 30 January 2016

Longest week ever.

Well. I did say having nothing to write about usually means nothings happening. So guess why I've dusted off my blogging fingers!

Basically, I got admitted for mystery stomach pain that since remains undiagnosed. This may be lengthy as I'm never good at compressing these! 

On Saturday (23rd) I'd felt sort of vaguely hungry for the afternoon and evening. I was at a friends 25th party so i was mostly eating cake and nibbles etc. I probably could have eaten more but i'd been coughing a bit and i was also cold, and those two things make my tummy flip around a bit and make me feel sick, so i was finding it kind of hard to even eat another mini sausage roll. 

I went to bed still feeling pretty hungry although i was shattered so wasn't really bothered in making anything - i thought I'd even just end up faceplanting cereal i was that tired. The odd hunger pain kept waking me up a lot which made that night quite long, then Sunday morning I woke up feeling the same. I ate quite a bit through the day but i still felt odd. By Sunday night it had turned to pain, and after dosing on and off, i woke up quite scared of how painful this was, so at about 11.30/midnight, i had John phone up the CF ward. I'd wanted to avoid it but i didn't know what else to do. They did the obvious and asked me to come in as they had a bed free. I saw the on call junior doctor on the ward and she basically had no clue what was wrong with me. I told her how I'd just come off Orkambi which she'd never heard of. She also said they'd send me for an xray, I'm used to middle of the night xrays when you've had a late night admission, so i half waited for that while i dosed off and waited to the paracetamol(!) to kick in (it didn't). I got about 4 hours sleep, mostly from being in pain and panicking. Being told they have no idea whats wrong with you when you're close to agony isn't fucking helpful. 

So Monday came along. Xray revealed no blockage, and I managed to once again fuck up the "Is there any chance you're pregnant" question by nodding yes. In my defence, they always mumble that, and the xray technician had THE heaviest Scottish accent and didn't seem to be very helpful about it when I said i was deaf. She never once smiled either, she seemed stern (yet young) and strict. 

With the blockage ruled out, the consultant saw me on the ward and basically started guessing. One option was reflux, another was my gallbladder/gallstones. Maybe pancreatitis. A few other things that didn't exactly sound like spa treatments. With reflux at the top of the list, they gave me gaviscon to see if it'd help. Oddly, it did, and the pain let up for the first time since the night before. Seeing as it helped they agreed I'd go home and basically continue to get better there. Especially as I hate sitting around in a hospital bed when theres no need.

I jinxed myself though. By Monday night I was feeling off again. I ate half a meatball from my mozzarella filled meatballs and pasta tea, and when i tried to sleep, my heart rate was going bloody mental. It was going so fast i could feel it just by lying there. I could practically hear it and see my chest pounding. I checked my sats monitor and my heart rate jumped about between 120 and 130bpm. My regular resting heart rate was usually about 80 or 90. I was lying down, (trying not to panic from the pain re surfacing) and not coughing or anything. Stupid thing stayed high all night (constantly waking me up and making me feel really sick) and stayed high most of Tuesday too. We phoned clinic who said to keep an eye on it. Then we phoned again when the pain got worse and they made a clinic appointment for me on Wednesday as I didn't want to go up on the ward that night. 

At clinic on Wednesday the consultant basically straight away said I'd need to come in again then the next day they'd do a gastroscopy (camera down my throat into my tummy). I worked myself up about that plenty over wed and thurs morning, as I'd have to be awake for it. Come Thursday afternoon and the consultant's junior doctor who does rounds with him comes in and says I'm not getting the scope so she had no idea why I'd been nil by mouth since 6am! They sent me for an ultrasound, which i should have had an empty tummy for anyway, but i could have been drinking water  (i drink about 4 pints a day as its really good for my chest). The nurses full on thought i was getting it as the cf unit nurse was telling me what happens and that she'd go down with me. 

Even though the ultrasound was done by 3pm, I never saw a consultant or jr doc again that day. The nightshift nurse was surprised I didn't get the scope, then seemed to decide that I'd get it the next day 'probably about 2pm' (which is what she'd said the night before too) and said the nurse from the day shift had said that to her. I tried and failed tea that night, i was gross looking spaghetti Bolognese, which I'd had the night before (and not eaten either). The nightshift nurse once again woke me up at 6am for some poor attempts at eating toast, and then no more food until the scope. Although because of the day before, i said I wouldn't believe it until the camera was halfway down my neck. 

I didn't see anyone all day! just nurses who were doing obs, who were full on expecting me to go for the scope. Annoyingly they never tell the HCAs if you're Nil by mouth so they offer you breakfast and tea and such and you have to say you can't have anything. Seeing as I was told 2pm by the nightshift nurse, i found it a bit odd when 2pm, then 2.30pm passed by. At 3pm I was raging (and 8 1/2 hours starved) and looking for blood. I couldn't find anyone for the life of me so just stood bang slap in the middle of the hallway waiting for someone i recognised - didn't want to accidentally launch myself on someone who i thought was a staff member to find out they were a visitor!

My consultant turned out to be at an outreach clinic, which was bloody convenient. This is the other CF consultant I don't usually see, but my normal one is on paternity leave (how dare he have a life and have kids!) which is what i partly blame for the reason i got ill. I usually need IVs the day after he goes on holiday!

So I eventually saw the consultants Junior Dr. I did apologise after, but that poor lass got both barrels and more. Turned out my ultrasound was clear (why the fuck couldn't the consultant have told me that when i saw him floating about on the ward the evening before is beyond me) and she had no idea who had been giving the order to put me on nil by mouth, yet alone who gave me a time such as 2pm. She was quite confused and I'm not sure if those orders are even trackable because for all I know, it was Chinese whispers or someone getting a kick out of telling the nurses, to watch Volcano Megs explode big time both Wednesday and Thursday afternoons. 

I was angry to say the least when I was told that I'd not eaten or drank for several hours for no reason at all. I yelled, I swore, I'd already packed my bags so I was literally about to grab them and walk off the ward and not come back. I don't even remember half of what that doctor told me (this is why I bring people to clinic appointments, they say so much that I either forget or it gets mixed up cos of my more than useless hearing). But we did agree that I'd have some food and see how I go (there was a chance that my stomach having been fine for that day and most of the day before was because of no food to cause the issues) and if I was okay then I'd be able to go home, and they'd send me an outpatients appointment for some department - obviously stomach related and it involves some sort of mini procedure but I cant remember for the life of me. I think it may have been the 24hr PH test as she said they like you to come off reflux meds for 4 weeks before hand, but that would be difficult for me as my reflux comes and goes, and theres a risk that I could be silently aspirating into my lungs with no idea and causing damage. 

They never did figure it out though. They did seem to think it may have been reflux with possible gallstones. Maybe something totally different. They never did a test that gave them a proper idea. I wouldn't be surprised if it was maybe small enough gallstones that passed through my system, as on Thursday, something down my sides and across my lower tummy was hurting a bit. The most important thing is the pain has gone, and I can eat again. It's fucked my appetite a bit and probably shrunk my tummy, as between Monday and Friday afternoon all I'd eaten was a couple of days of breakfast and a few yogurts, Not to mention that I didn't do much as the pain made it difficult to walk far and I also got very little sleep being on the ward and then waking up at 6am.

I'm pretty angry, not at anyone specific as I don't know who fucked up so badly. It was probably miscommunication, or total lack of it. But its just insane to let someone starve themselves for 9 hours, twice, when they're constantly told to eat as much as possible and keep their weight up. I imagine my consultant will have a ball with all of this when he comes back to work (poor sod). If they are sending me to have a 24hr Ph test done, then its something I've needed for a while anyway. I've never had insane stomach pain from reflux, but i do have the burning sensation and i have burnt my tongue in the past from the acid. I'm only on 20mg twice a day of omeprazole though, so i found it funny how the jr dr said thats quite a lot when I know lots of other CFs who take multiple reflux meds and its still not enough. 

There was a few weird things that week too. Like the student nurse putting the sats finger probe on my ear cos my sats were low - they'd been consistently low all admission, usually between 89 and 93, they're usually 95 when I'm ill! But I never did get put on oxygen. I wasn't asking for it but i did have an impressive headache a few times which came with some of the more lower sats. Usually the nurses just tried a different finger to make sure the number was right, rather than putting it on my ear and getting nothing! (I did ask a nurse and apparently they can put it on your ear if they're not getting a good reading, but i don't think it even fit on my ear properly. There was also a random junior doc who came in my room asking about a med I take once a week. I couldn't think of anything but just as she was leaving I remembered my Vit D3 was once a week. That was apparently what she was on about (she had to repeat herself 3 times as she had a heavy lisp and apparently seemed unable of logic that meant write stuff down instead) and seemed happy with me saying I take it on Sundays, then she fucked off and didn't explain herself. No one else knew why she asked either.

I didn't hear anything from any friends except one which didn't surprise me but it's always shit. My parents and Johns mam visited me as well as John himself almost every day. I don't mean to whine for attention but I didn't think I'd overdone the admissions in my life so far that people are already bored and don't think its important when I go in. It wasn't even my lungs this time, it was mystery stomach pain that left me in agony and exhausted me for days. You'd think that would be enough to text back straight away when your friend says she's in hospital rather than reading the text and waiting 10 bloody hours before replying. The only ones who do care are your CF friends, but they're not really the ones who can say 'okay I'm gonna come visit you later', they can just text you and try and keep you company via your phone. Its shit and I give up with people because I'm fed up of it, I don't really know what it would take for someone to send the first text because so far nothing ever has. Really makes you feel loved(!)

Anyway aside from the crap that I went through and the apparent ability to always be ignored while admitted, I'm good now and able to eat, whenever I like! I'm hoping I blog more this year, at least more than I did last year. Me and John are going to Universal Studios, Florida in September so you can at least expect a giddy post with lots of photos then!

Friday, 1 January 2016

2015 roundup

(god it feels weird to say 2015 is over)

I usually do these on a month by month break down. But frankly I've done absolutely fuck all most months, and to lay it out like that would be depressing (went to the gym, went to the hospital, watched tv, repeat). A handful of amazing things happened. A handful of equally crap things happened. Its been a big mix! So I think I'll dive in...

I think a main thing that happened was definitely house. I've said before, we went from a 1st floor flat to a house, and everything has changed so much. It's also warmer thanks to the less drafty layout of the house too. Moving has totally changed my general happiness because this place is so nicer than the flat. Also the ability to just cook away when I like because I have ROOM for it! Usually I just make cakes or meringues and then stuff my face as I have no one but John to share with. Their loss.

I've had quite the usual share of IVs. I'm not sure how many exactly, but my last ones were after a mammoth (for me) 4 months off them, when at some points in the last couple of years (including December 2014) I managed a shocking 2 weeks. I do have to gauge for myself when I need them as my team don't generally do bloods, including infection levels unless you're more ill than usual/having annual review or admitted, but they do test sputum which at least means you know you're getting the right drugs. However this does on occasion make me wonder how many times in the past I've had pointless IVs - where my CRP is low, but some other mystery is causing the cough. I'm looking into nasal rinses at my next appointment - I think post nasal drip is becoming quite a fuck off issue for one of the reasons why I cough so much at night - no matter how long (or short) its been since my IVs.

Other wise, my lung function seems to have stayed relatively stable and my weight has too which still astounds me. I still get tired easily - I was tired by 10pm new years eve, and was pretty much sitting for most of it (although at a friends house and I did have a drink in my hand, I'm trying not to become a complete old woman just yet)

I had far too many hospital appointments, not just clinic, but xrays, dexa scan, liver scan, physio, research, dentist, opticians, and ENT, including a cochlea implant assessment, because 'no thanks, I'm not interested and don't want a cochlea implant' means 'yeah please send me for the bloody assessment for an operation that would be faaaaantastic for my lungs'. No doubt this year will have just as many, but hopefully not so many that leave me frustrated and annoyed. And I'm hoping somehow we'll find something that will help my back, especially after the disaster that was acupuncture. I really should be able to stand more than a minute before being in pain so much I have to desperately find somewhere to sit.

Gym has progressed well for me. I started with 3 general gym sessions a week. I don't have a trainer, I don't have a gym buddy, and I'll admit, I wish I did have someone to go with (or could afford a trainer) as its hard to push yourself every time. I even continue to go while on IVs, cos if theres any time where the gunk needs seriously shifting, its when IVs dehydrate you and everything turns to rock. About mid way into the year I started classes, specifically because my motivation has seriously waned with gym sessions. Even the instructors don't help. They just sit at the desk and drink coffee or do stuff on the computer which looks nothing like work. So I started body pump express. I started with a bar and 2 1.25kg plates on, I've increased to a bar with two 2.5kg plates, and when you increase through the lesson, I can sometimes try and add two 1.25kgs so I've got 7.5 total. Thats a nice increase from 2.5kg! I can't always manage an increase though. I have to stop comparing myself with people who started at the same time (or after) who started with equally low weights and now start with 10kg at the beginning of the lesson. Even the old women can pissing lift more than me.
I also do pilates now, when I manage to get a space in the class, as it books up fast. We have a mix of teachers, probably depending on whoever's free that day, but some are great and some piss me off a treat as I can't hack standing around for 5 minutes between each move while they explain. My aim for this year is to try and attend a full hours body pump class, maybe as well as the express (30 mins) class, as my general gym attendance is still shit. Usually cos it takes me so long to go that I time it badly and go when its busy or full of school kids. Yes I'm coughing, yes I'm fine, and no I don't need to be reminded to have a drink.

I didn't get anywhere on the job front at all, I've applied to so many. I keep getting unrealistic suggestions from friends, like selling photos as a business or craft things - I'm in craft groups and see people struggle a lot, and they're the ones who's things are perfect. Im happy with my general craftiness but they're not sellable standard and I don't have the money to get things started/continue making things when sales dip. My things are just wonky enough that I'm happy or a friend is happy with it as a gift, but I could never sell as the pressure to finish something perfect enough on time would be huge. Also, I don't think I could manage a business myself - I've watched my boyfriend and his business partner do it and I know the stress is huge. I also can't do more of the basic jobs - anything standing, lifting or speaking to people a lot (like in a shop) as my hearing is so bad. I'm sick of explaining this to people as I look like I'm making excuses, but I struggle to understand a whole conversation from people I've known my entire life. With strangers, I get about 3 words of it. If I was at a checkout and someone asked for a bag or cash back or whatever, Id either not know they've spoken or do the idiot smile and nod thing because I think they've been talking about the weather.

The trial finishes soon, its a grey area and I'm confused about how things continue after, but then again, I probably should broadcast online what I know so far so you'll get nothing out of me here. I have an eye test coming up as they had one to start too - I presume thats to make sure theres no serious changes compared to the one they did at the start of the trial too. So thats a day with those drops that make you semi blind, what a fun day I'm gonna be having.

I did go to Harry Potter studios, and met up with Gem which is one of the bigger highlights too! Wonder what we'll do this year as we want to keep it an annual thing (and frankly based on that I see her more than some other useless friends).

(in trying to find a few photos to sum the year up, I realised there's only about 5 tagged photos of me on my facebook since last years new year photos. There's usually tonnes. How's that for a hermit life?)

I gained glasses to my annoyance. Because I don't already have enough sitting on my ears. Luckily theyre for driving/watching tv etc rather than everything 


One of my many makes! A penguin mosaic tray. 

Obviously loving the gym. So much happiness right there!

This had to be done! She's a classy girl

Hopefully this year will have some changes! There's a couple of things happening, including us saving up for a holiday and maybe a trip up to the top end of scotland to visit John's aunt and uncle, a break is always nice to have, and if we're very very lucky, because of how high up they are, we could try and catch a viewing/photo of the northern lights. I know these are impossible to predict more than a day or so ahead so it does come down to luck (and the right conditions) but we can always try!

Hope everyone has a lovely 2016!

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...