Long time no see..

It's been a good couple of months since I've updated my blog! I've just been busy at work, busy doing things out of work..I guess it's a good thing, eh?! 

Been feeling pretty good chest wise which is lovely - the odd rubbish day where my lungs just don't fancy playing ball but on the whole everything is pretty grand. 

I really need to get back in to writing my blog, once a week or once every couple of weeks. 

I think the main things to say about, is that my health seems to be good at the moment, I'm always happy and smiling, I've managed to avoid IVs for a few months which is fab and the not so good news is that it's nearly the end of the summer holidays! Back to work it is next week..

I had a check up at the hospital today - lung function is a little down but nothing worth panicking over yet..on Monday the little lungs struggled quite a bit but it seems to have eased so hopefully I can make it till the end of September before I need IVs..that would be perfect! 

I've had a couple of days where I've had all day hypos; my blood sugars just wouldn't stay up. Mentioned it today but they said if its only a day here and there to just keep an eye on it and go to A&E if they drop too low.

A few weeks ago I asked for my iron levels to be checked as I've been feeling very faint a lot, looking pale, bit of out of it and my balance is completely sqiuffed - I'm constantly falling in to things and injuring myself! Dr Orchard had a look today and said that I was correct and they are low so I'm booked in for an iron transfusion next Monday..not the most fun way of spending my last day of holiday I must say! Iron infusions aren't pleasant..not very nice side effects so the nurses sit with you for a while and then check back a lot.

Big news I guess is that I've finally passed my driving test! First time too! Was very surprised and very happy with that so now I'm driving Marvin around.

That's all I've got to say really - everything seems to be good at the moment so fingers crossed this iron infusion does the trick and hopefully my lungs can hold out for another month before I need IVs!

Oh..and I promise to try and update my blog more regularly again!

Precautions

Hey everyone, I've been feeling really good lately so haven't been blogging! So busy with lots of various things!
The past few days I've started to feel a bit groggy. For a few weeks chest has been quite up and down and it's hard to tell whether it's just the hot weather or hay fever or an infection but since about Sunday I've had temperatures (not crazy high about 37.8) in the evenings, been feeling very tired, headachey and just that general 'not feeling well' feeling that's a bit hard to explain. Next week I've got a very busy week workwise so I thought I'd give the hospital a ring today to ask for some oral abx as a precaution and hopefully to tide me over the next couple of weeks. I'm hoping this will be enough of a boost as I really don't want IVs right now! They've given me Augmentin which I'm usually okay on apart from nausea but I've got lots of ondansetron in the cupboard for that! Hoping they do the trick..
Fingers crossed eh?
Everything else seems to be going well at the moment - I'm really happy, relaxing more which I really needed to do. My gorgeous little cousin had her 5th birthday last week and my Grandad had his 80th the week before - both such lovely days spent with the family :) there's a few pictures on here from the days.
Counting down until summer holidays, not too much longer now. Let's hope this lovely weather stays, top up the vitamin D!
Enjoy the rest of the week and the weekend, I'm sure I'll update soon :)













































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First combined clinic, CFRD & CF

For those who don't know, CFRD means Cystic Fibrosis Related Diabetes. It's slightly different to type 1 and 2 - we just like to be awkward! Today was my diabetic and lung checkup - they've changed it so there's a diabetic doctor and nurse who come to the unit on one of your normal clinics so I don't have to book another appointment somewhere else in the hospital! Much easier.
Lung function was down a little, but we're not worried about it, just something to keep an eye on. Dr Orchard was pretty happy with how everything has been going, especially as when I last saw him a couple of months ago my lung function had dropped to 30% so he was quite concerned - today was a better picture :-) mentioned about my leg pains as I do to pretty much every medical professional I see on the off chance one of them says 'oh I know EXACTLY what that is, here let's do this to stop it!' But no such luck, like everybody else he says there's probably nothing that can be done.
The diabetic consultant was happy with my bloods are they're pretty well controlled at the moment, just the odd high. I mentioned that I've been struggling with lows lately, usually between 3-6pm but sometimes at 11pmish. He said it can't be due to my insulin as I only have a small amount before my main meal in the evening so that's out of my system in about 4 hours. They suggested changing my lunchtime foods by having long lasting carbohydrates instead of quick ones - for example swap white bread for brown. So I'm going to try that and they said if that has no effect they will arrange with my CF drs to have a steroid test done as I used to be on a lot of steroids and apparently if my body isn't producing enough of their own, it has an affect on blood glucose levels so may be a reason. Failing that I may just need to snack a little more! Always a good excuse for a choccie biscuit ;)

That's mainly it, quick update as nothing too major has been going on. It's been lovely getting out in the sun the past couple of days, makes you feel a lot better! The students are on half term next week which means a week off for me..yay! :-)
Bikini modelling CF style.....?













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CF awareness month

I appreciate this may be quite a long post but please just take 5 or 10 minutes out of your day to read, sign up to become an organ donor and to donate money to the CF trust. 

'But you're wearing make up - you must be feeling healthy'
'You look fine..' 
'How do you need THAT many tablets?' 
'I didn't realise you had to do nebulisers, physio and all those treatments every single day..' 
'IVs and hospital can't be that bad surely' 
'I'm on two weeks of antibiotics, I know how you feel - I feel like death on them'

We hear these things all the time, purely because people aren't CF aware. I don't tend to tell everyone how many treatments I do, how many times I do them, how often I feel unwell or how things affect me because you don't want to either bore people or seem like a moaning minny. Even when sick on IVs, feeling really ill and exhausted I've still gone out to see friends or family, even if its just for a couple of hours but because you've left the house people assume you feel absolutely fine - it can be quite easy to slap on a smile and say you're feeling alright when the truth is that you feel horrendous.

Try to imagine this - you take a breath in, but it's not a normal breath like usual..you get the smallest bit of air in and you realise that's the most your lungs will allow you to take. You struggle to walk to the next room to get a nebuliser that may make your breathing a little bit easier for a tiny bit of time. Your head is spinning and hurting from the constant coughing and sometimes low oxygen levels, your lungs feel like they're crushed and it feels like you're drowning. Your temperature is sky high so you're sweaty but cold and shaking. The IVs you're on are making you so so sick and grumpy but you know without them you'd be even worse chest wise. IV time comes and you can spend an hour and a half doing them, watching them go into you knowing that you're going to feel even more sick any minute but praying they help the infection thats raging in your already tired lungs. If you're lucky you have someone at home with you who can help get things, do things but some people don't have anyone there so have to struggle on by themselves whilst feeling like this. 
Most of you reading this will probably never feel this feeling. The terrifying feeling when it's the middle of the night, you're coughing all the time and literally gasping for every single breath. The panic that goes through you as you think 'I need to get more air in'. With every single infection comes more scarring, more lung damage.
We may recover from an infection but that does not mean its not damaged us. There is always a fear with each bad patch that you will not get through it this time.

CF is the countless tablets we take every day, with every single meal or snack we need Creon to help digest our food. Nebulisers every single day - when I'm 'well' I take about 4-5 a day, but when I'm ill I can end up taking around 9-12.  We have to do physio - either percussion where someone pats on your chest, back and sides to try to shift the sticky mucus that is inside the lungs or you can do various breathing exercises and huffs. 
And then when you're poorly and on IVs you realise that you spend most of your day doing treatments. IVs can be three times a day, 1 and a half hours each time (can be longer or shorter) and at 6am that's not pleasant! Operations, bronchoscopies, chest drains, cannulas, lines, ports, blood tests, X-rays, lung function tests, exercise tests, chats with every medical professional under the sun - all of these things can happen.

The feeling of worry when you wonder if you'll manage to walk around the shop, the feeling of dread when you know it's going to be uncomfortable and well result in major coughing fits with half the public raising eyebrows and staring at you - I swear sometimes if I walked around a shop in my underwear I'd get less looks than when I'm coughing! Not willing to try it mind you…! Supermarkets are the worst culprits as they have chilled isles and the cold air really just sets you off.

There are other complications too - CF doesn't affect the lungs..oh no, that would be far too simple. The pancreas is pretty damn lazy, hence the creon tablets with every food but this also can bring on CF related diabetes (which I have). The picture shows all the various ways it can affect us. 

CF can also affect you mentally as well as physically. As you grow up, thinking about your own mortality isn't exactly what you had in mind. But we have to face this, especially when ill it's going to cross your mind. Seeing close friends struggle and pass away just breaks your heart but everyone sticks together to get through it. It hurts to make plans with friends to then just feel too sick to go out and have to cancel - seeing them all have fun whilst you're laying in a hospital bed or at home, struggling for breath and just wishing you could be there. It must be nice not having that worry and anxiety of 'can I walk that far' or 'If I want to go out I need to rest up all day so I can manage it'.  The anxiety is horrible - when I'm on IVs I get quite a lot of panic attacks, I still get some when I'm not on IVs but not as often. With having so many friends go through this and not make it, it makes you realise that you just have no control over things and the anxiety and sadness can spread to other areas of your life.  Some of the medications can make you feel incredibly down or on edge too which doesn't really help matters! Again, people assume just because you're not going on about it on twitter or Facebook etc saying how hard things can be that you're absolutely fine. Maybe we should write a status every time we take a tablet, do a neb, do treatments, feel down, feel anxious, feel sick. 

I'm so lucky that I have a very understanding family and group of friends but there are always going to be people that just don't get it, just think you're making it up. Don't understand how one day you can walk around, feel pretty good, yet two days later you're struggling and need IVs. I seem to go downhill pretty quickly in the past few years but luckily can perk back up.

A lot of people I've spoken to lately assume that if you have CF you are always on the transplant list - you aren't. You only go for assessment when you're very sick..there would be no point in having a transplant when you're lung function is in the 60% range as the risk of the op would be too great. The main issue is that there are not enough lungs available for those who need a transplant. You can't just have any lungs, it has to be a match. Some people can be listed for a week and get their lungs, some people a few years and some people may never get their chance of a second life. I know I've banged on about it a million times before so to shut me up just go and sign up to become an organ donor. If your closest friend or family member or even yourself needed an organ you would be begging people to sign up.

A few years ago when I was 18 I had 16% lung function, I couldn't walk or eat or do anything. My doctor said my body was shutting itself down as my Mum wheeled me in to the hospital and it was the scariest time of my life as I just lay there helpless waiting for them to help me breathe. Luckily my doctor at the time did everything he could and although it took months and months I got my weight and lung function right back up to where it should be. But those months felt like years - I was on IVs for pretty much a whole year. I would force myself to eat because I didn't want a peg (a button and tube that goes in to your stomach - CFers connect it up to a feed overnight if they find it hard to eat or gain weight). Not knowing if you're going to get any better is a horrible thought but you push on with the hope.

A few quick CF facts:
There is no cure
1 in 25 carries the faulty gene
Each week 5 babies are born with CF and 2 people die
It is not catching 
Everyone with CF is affected differently - even siblings

I'm sat here trying to think of what I've missed out. There are tonnes of facts and figures I could give you but I'm pretty sure I've done that before so I thought giving a perspective of what CF feels like would be different for a change although it does all seem a bit of a ramble - maybe thats because I've read it too many times! 

If you've got this far then thank you, please share this blog..we want to raise as much awareness as possible. CF is a part of me, it doesn't define me. And without it I wouldn't have some incredible bonds with some wonderful people, I wouldn't be grateful for breathing, I wouldn't take each day as it comes and I wouldn't be as strong as I am now. 


Donate to the CF trust

Sign up to become an organ donor

Half way through..

Quick gripper change today which means I'm halfway through this course of IVs - hopefully won't need anymore after the two weeks. Starting to feel a bit better. Had a few rough evenings the past few days where all the gunk in my lungs has been so thick & there's been so much that I'd have huge coughing fits where I just felt like my lungs were closing in and in. It was pretty scary as each time I tried to take a deep breath in to cough even more it just blocked from the gunk. Seems to happen in the evenings more so than the days now and is starting to get easier which is always a good sign :-)
This round of IVs have made me feel very very rough..headaches, dizziness, feeling so exhausted that I'm having to sleep after doing things and at one point they were making me throw up too so I've started taking my antisickness half hour before them which hasn't cured all the nausea but has stopped the actual sicky bit thank God! Managing to walk around easier now and do a more.
I'm determined after this lot of IVs to get in to shape and also to start feeling better about myself. Really need to boost my confidence & think more positively (however cheesy that sounds!)
Hospital is next Wednesday so fingers crossed that all is grand & I can finish this course..I'll keep you posted :-)



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Needing a boost

I mentioned in my last blog that I wasn't doing too well and that IVs may be on the horizon..
Oh how I wish I was wrong sometimes. I didn't exactly realise how bad I'd got. The problem is with me is that I tend to go from okay to loosing quite a bit of lung function very quickly. I had my appointment today and my lung function has declined quite a lot, down to 1.1 litres (about 30%) which really isn't very good at all. A new dr has started at the unit so I met him today - he was lovely so that's nice :-) I mentioned about my blood sugars going high, temp up etc..all usual signs of having an infection. Add my crap lung function into the mix and it was no wonder IVs were heading my way!
Luckily, he's agreed to let me do them at home where I'm happier and more comfortable. If things get even worse then maybe I'll have to stay in or meds could be added to the mix so here's hoping things start to improve.
People don't realise how tiring just trying to breathe can be..when you're puffing and panting away it takes so much energy plus the IVs don't help either. I would love to have some people feel how it feels right now because I swear most people you tell think you're just a bit tight chested and are making a deal out of it & that you'll just get better at some point. But with every infection comes more permanent damage.

I'm starting to get quite fed up of being ill pretty much every holiday break we get from work - whether it be half terms or Easter, Christmas, summer - I seem to end up on IVs, have bad stomach problems or a delightful combination of the two!

Lately I've been suffering with what I can only describe as odd travel sickness headaches but without travelling. My head hurts but not a lot, just feels all fuzzy and sore especially at the front and sides, I feel very sick with it plus quite dizzy. I get it randomly so mentioned it to Judith who said it sounds like low sats by they seem to be okay at the moment so she wondered if they may be dropping when I'm doing things or if it's just because the infection making me feel rough. So we're seeing how it goes and if it's no better after the IVs finish we'll investigate further.

First delivery of IVs tomorrow - that's the pain with being on mero as it means waiting in for deliveries every two days.
I'm going to relax for the rest of the evening with a good book & a cuppa :-)



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Easter holidays

It can be hard to explain to someone how it feels when your lungs aren't quite playing ball. Right now I feel as though I'm in some sort of bubble and each day it's getting smaller and smaller as my lungs get tighter and tighter. Hopefully that bizarre imagery will make some sort of sense with a few of you! I barely slept last night and the past few days I've just not stopped coughing - that, teamed up with a really tight chest and plenty of crackles, just kept me up for hours despite being shattered. I did wonder if it was the Sahara dust and pollution that was over on Thursday but that's all gone now and I'm still feeling rough breathing wise. I've got a cold so keeping an eye on things for the next couple of days..I just really don't want to have to spend the Easter holidays on IVs but then at the same time I don't want to end up very poorly! I know I've got to ring Judith on Monday to book myself in for a port flush & I know if I go I'm sounding like this they'll mention IVs so I'm hoping it all clears up by then.

Guess what! I've finally been out driving in my own car - I know I've had it for quite a while but I ended up having three months off driving lessons as I kept getting sick. It's such a comfortable car to drive (a Mini Countryman). I'm back having lessons at the moment but hopefully will be able to take my test soon so I can start getting myself places rather than feeling bad for relying on lifts all the time!

Easter holidays mean two weeks off :-) (for those who don't know, I work in a school for children with Autism) I don't have much planned, just a few lunches out, visiting places, seeing people. It's nice just not having to worry about setting an alarm for work and doing what you fancy. Let's see if these lungs sort themselves out because feeling like you're going to collapse every time you cough is wearing a bit thin! Have a lovely Sunday :-)


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