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 


Yay(!)


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!