Friday, 26 October 2012

Chest pains :(

Spoke too soon yesterday when I said this cold hadn't spread to my chest! Woke  up this morning with really really bad lung pain, all down the back. Was in tears over it.. In the end I took some painkillers & managed to drop back off to sleep. Rang hospital (really didn't want to but mum said I really should & from experience mum knows best! Hehe) and Dr Ho said to keep on top of the painkillers, my Azithromycin (antibiotics) which I take every other day he said I should now take EVERY day & then see how I feel on Monday..if I feel the same or worse to go down & maybe IVs. GREAT! Not what I wanted considering I have my week off this coming week..have lots of lovely things planned and I don't want to have to cancel my plans and spend the week feeling shit. That's one thing me & fellow CFers were saying about earlier, we hate having to cancel plans because we suddenly come down with something & are unable to do things. 
My lungs feel like somebody is poking about inside them, they're really tired, I'm exhausted (keep sleeping so much), headaches, dizzy, feeling quite out of it too & feel sick..even my ondansetron (antisickness) aren't working :( My cough has got worse too which is tiring in itself..people underestimate how exhausting it is coughing so violently ALL the time & trying to clear your chest.
I must be feeling rough, I even did an extra neb! Haha.

ERGH! It was around this time last year that I became REALLY REALLY sick and of course I know I'm not as bad as that it still sends me panicking that things are going to take a turn for the worst like they did last time.
I've spent yesterday & today just lying on the sofa in my pjs, trying to eat as best as I can, feeling crap & the fact today I feel worse than yesterday is not making me feel any happier about it all!

I'm really hoping that this is just going to go over the weekend and on Monday I'll have my energy back, my little lungs will be rested & feeling well and everything else will sort itself out! Or it's down to hospital I go to see what they say.

Thursday, 25 October 2012

Colds, cough & a week off

Just realised as I typed the title of the post that it rhymes!
After a successful hospital visit last Friday, I woke up yesterday with a swollen throat..didn't feel particularly sore but felt like my tonsils were soooo swollen, found it very hard to eat & drink. Had a bad headache, awful nose, coughing like a loon etc. Managed to pull myself into work with the use of painkillers & anti sickness stuff but when I got home I was just exhausted! I couldn't sleep properly last night and was up a lot during the night coughing and sneezing my head off so didn't managed to go in today.
The problem is, when somebody with CF gets a cold, it's not just your average 'oh I have a bit of a cough, headache and a sneeze' it hits us bloody hard! I'm not saying non CF-ers don't feel ill, just saying that we really do suffer more due to our chest. We get sick a lot quicker, it affects us a lot more than it affects non CF-ers and there's always the big worry of 'please God do not let this spread to my chest' because then there starts a lot of other problems! 

I don't think this has spread to my chest really, yes I am coughing a fair bit more..but it's not an extremely chesty cough (yet! touch wood!). My chest is struggling more than usual but it's nothing TOO bad I don't think! Problem is, us CF-ers get used to feeling shit so even when we're feeling awful we keep thinking 'well it could be worse' (such as not being able to walk more than 10 steps) so we just push ourselves and carry on therefore making us more sick! 
So I really need to learn on detecting when enough is enough! Which is why this morning I stayed off work :( and had a day in bed.. I've literally slept nearly all day.. had an hour awake to try and eat a bit of lunch (my appetite isn't too great at the moment) and then fell back to sleep again. If I sleep anymore I'll probably end up hibernating! Also, I fell asleep with the heating on and woke up so toasty!

On another note, I rang hospital about my iron levels & said they were perfectly fine! This always happens so I might get them to check them again in a couple of weeks when I go back to see if anything's changed :) 

Good thing is, next week is half perk to working in a school is we got holidays! So I've got a fun packed half term ahead of me... going shopping in Westfields with Mum, visiting my best friend Luci at uni for a couple of days, then a day to relax at home.. So I NEED to be better for then!

I'm off to lay on the sofa in my pjs, under a blanket with some lemonade and sugary ginger. Yes sugary ginger pieces are a lifesaver when you're feeling sick!

Bye for now :) xx

Friday, 19 October 2012

Hospital time again!

Today I went back to the hospital after managing a whole month without an appointment *cue cheering* That's the longest I've managed in over a year :)
AND to add to great achievements I've also managed two months off IVs :) even better! Compared to how I was feeling this time last year I'm so grateful of everything the doctors have done, my family/friends have done in supporting me and I have done to get myself back to feeling like this. Yes my lung function still has a fair bit to go to where it used to be BUT I'm a lot better than this time last year so I'm happy :)
So I popped to hospital and they checked my weight which was stable so that's good considering past few days my appetite hasn't been as much. My lung function was scarily EXACTLY the same as last time! Dr Ho came in, was happy with everything..apologised for the reaction to the nebuliser I had last time! His words were 'sorry for nearly killing you, don't worry we wont try it again!' Haha :)
He wondered about giving me azteronum nebulised (never had it before so if any CFers have had it let me know what it's like, if it works for you!) but he thought he'd rather use that when I am feeling more chesty so that our first resort isn't IVs next time, he'll try this first! So he decided on giving me Ciprofloxacin (just some antibiotic tablets) for a month to hopefully give me a boost. Last time I had them I did feel pretty sick and ended up with rashy feet and sunburn..the bloody tablets even give you sunburn in the winter! So I've stocked up on antisickness tablets so hopefully I can managed but he said just stop them if I feel really rubbishy!
I also asked Dr Ho to check my iron levels as I'm getting the usual symptoms again so Judith (lovely nurse) took some blood. I'll ring in the week to see what it's like. He wants to know WHY its going low so often, transfusions should last 9 months not 5! And also my levels go from fine to literally the next week being at 0! Nothing. I get the symptoms like a month before hand too so he wants to find out WHY it's doing this! 

Apart from all that, Paddy the port had another flush of saline and heparin so he's all topped up and working fine :)
Pretty happy with how it all went and I don't have another appointment for yet another month! Result!

Last thing, I swear my lovely friend Sam must be looking down on me at hospital! Last time I went the blue paper wafted as if a breeze were there..but there was no breeze. And today the bin went clang when nobody was near it and it was shut. If anybody would try to make me laugh it would be Sam! And both hospital visits have ended well so she must be sending good luck vibes to me..and possibly scaring away the dietician as she's not been to see me at all! (Sam and I used to laugh about the dieticians constantly moaning at us when we were poorly and not understanding it from our perspective!) 

Have a lovely weekend xx

Monday, 15 October 2012

It's been a while..

Haven't blogged for a while but I've been pretty busy and healthwise nothing major has happened lately apart from a few little bits like low iron symptoms (i'll explain more further down!)..which is good but when everything's all fine & dandy healthwise I'm never too sure what to put, I don't completely want to bore people with every little detail of what's going on in my life, or what I've had for dinner etc!

Anyway, works been going really well, I've been out & about with friends and spent time with my family too! 
Last weekend it was my little cousins birthday so we all celebrated that & my cousin Sara made a GORGEOUS kitkit and m&m cake.. YUM.

During the week I've been at work, had a lovely catch up over a Starbucks with Emma & then Steph and I had a lovely evening out for a few drinks on Thursday! 

A couple of years ago they found out I was anaemic (low iron). It was very odd, I was poorly for a good couple of months and all of a sudden I had no iron in my blood. One week the levels were fine and the next week there was NOTHING. Not a drop! Docs thought it was odd but I had iron tablets and after a year my body though 'hey I'm bored, lets stop absorbing the iron tablets and be a pain in the ass!' So surely enough, my iron levels went low again; luckily I knew the symptoms from before! So seeing as I was in hospital (this was last Nov) I had an iron transfusion. Now these are meant to last around 9 months.. but my body again being awkward thought it would use up all the iron in 5 months instead! So again I said my iron was low as I was getting the symptoms..they checked it and said no levels were fine! But I kept on and on every week as I was pretty sure it was low and suddenly one week there was no iron again! So strange.. So I had another transfusion. That was around 4-4 1/2 months ago now and I'm wondering if I'm getting the symptoms again. The odd this is I seem to get the symptoms 3-4 weeks before it says the iron is low on the blood tests :S no idea why. But I'm VERY tired all the time, can't concentrate, pale, get upset or angry over the smallest of things (which really isn't can get in such horrible moods for no reason and I hate it) and feeling queasy with bad headaches. Another odd symptom is wanting to crunch idea why! I could be completely wrong & just having a rough few weeks with it all but I have hospital this Friday (yay for managing a month without an appointment, longest time in year!!!) so I'll ask them to check levels and then keep an eye on it. I can always go for a blood test in a couple of weeks if I feel it getting worse. Low iron is such a horrible feeling. At least it can just be sorted out by an easy iron transfusion, although that does take 4 hours to go through so I'll have to get some yummy snacks and some magazines to take down to hosp for the day!

Anyway, I saw this on somebodies instagram and loved it! I should realise this somedays as I do forget the sometimes I do need to just have a day to relax and do nothing but when you're feeling well you don't want to do that!

My instagram is grace_oshea if anyone fancys a peek! 

Thursday, 4 October 2012


Pretty please please sign this petition for us to receive Kalydeco. Send it to your friends and family, to anyone. Share on facebook, twitter, your blog etc. We want as many people as possible to sign and campaign! 
Thank you :)

Monday, 1 October 2012

Mysterious leg pain!

I'm sorry it's taken nearly two weeks to update my blog but I've been quite busy from work, very tired after work and healthwise (up until last friday) I've been pretty good!

You're probably wondering from the post title what I'm on about..basically for like the past 5/6 years I've suffered with the most horrendous leg pain. NO, it's not cramp, I'm not that stupid! And I've been checked for arthritus etc and it's not that. They've scanned it, x-rayed it...nothing. Not a thing at all.
I can happen in either leg, originally it started off in my shins and now it can hurt in either my foot, ankle, front of leg, back of leg, all the way past my knees, back of my knee etc.. either in one of those places or most of them at the same time! It can hurt for either 30mins or 12 hours.. it's THAT random. Doesn't matter if I've been doing exercise, not doing exercise, wearing heels, not wearing heels etc. It's not hot or cold or hard or anything. It can go from 'owch thats beginning to hurt a bit' to me crying in the middle of the night because it wont stop hurting. Just a really painful dull ache, not a sharp shooting pain or anything.
The main reason I'm blabbing on about all this is in the hope that SOMEBODY CF-er or not will have some idea what the heck is causing it!!!! It's sooo strange, my doctor when I was a child used to call me 'funny legs' and any doctors now (diabetic and CF) are clueless as to what it is..not even related to how my lungs are! So it remains a total mystery..if you have ANY idea, feel free to twitter PM or facebook PM me if you don't want to leave a comment on here! 
Treated myself to some warm cosy
new slipper boots!

Trying to think if there's anything else that's been going on.. oh yeah, had my flu jab which gave me a high temperature and awful chest for a couple of days! Fun fun fun. 

Just a quick post tonight as healthwise everything's not been too bad at the moment :) (finally, needed a bloody break from IVs & everything for a while!) 

It was my friend Samantha's funeral on Friday, I couldn't be there but she requested that everyone wore bows as she loved them. And seeing as the Cystic Fibrosis colour is purple, I wore a purple ribbon tied in a bow around my wrist the whole day (as did Mum) in memory of Sam. xx

Made a lemon meringue pie
Culinary genius ;)

Strawberry daquiri time!