Wow it’s been nearly two years since my last post. Life’s
been pretty crazy in those two years which is why I guess I haven’t updated the
blog in all this time, I’ve even moved out of my Mum and Dad’s house, which I
thought I’d never do! However, after reading Five Feet Apart book by Rachael
Lippincott and then watching the movie I thought about writing a little diary
about my life with CF (but again haven’t yet got around to doing so) and now
with it being Cystic Fibrosis Awareness Week I thought what better time to do
an update. I clearly had the same idea almost two years ago during Organ
Donation Week haha.
A little more about me, just in case you’ve forgotten who I
am. I’m 23 years young, have Cystic Fibrosis and now Cystic Fibrosis Related
Diabetes too. So, life’s all fun and games whenever you want to eat to remember
that first you have to:
Check your blood sugar by pricking your finger
Inject yourself the right amount of insulin
based on what your sugar levels are and what meal you’re eating.
Take your Creon throughout your meal (check CF Dictionary
above if you’re not sure what these are). If you take all of the required dose
before eating and then struggle to eat all of your meal, you’re basically
screwed and risk spending a few hours later on the toilet, sorry for the honesty!
I now live with my boyfriend Craig who has been my partner, best
friend, nurse, physiotherapist, you name it, over the last year. I knew he was
the one when I arrived on our first date with an IV drug hanging from my portacath
and he asked if he could flush it off instead of running a mile. I’ve known of
Craig for many years as we went to the same school, although he is five years
older than me. But we got talking many years later when we bumped into each other
in a nightclub, classy eh? Anyway, I’ll leave that there as Craig is probably
cringing as he reads this and will moan about it later.
I work in a Primary school that I attended myself as a
child. I am also slowly completely a Foundation Degree in Teaching too but have
had to defer until next year after a scare to my health that I had in January.
So back to my life and the joys of Cystic Fibrosis.
At my recent annual review, my lung function was down slightly
from its best and my sputum has still grown MRSA and Pseudomonas, so I’ve been
on oral antibiotics for four weeks now. I did two weeks of Septrin but my lung
function stayed exactly the same percentage and just made my chest a lot more productive.
So, I then started a two week course of Ciprofloxacin and Linezolid which again
I think has only helped to some degree so it could be IVs again when I go back
to the CF Unit on 2nd July. Although
I haven’t been in hospital now since January when I picked up a sickness bug and
ended up with tonsillitis too. That was a scary time as I couldn’t eat a single
thing for a week and ended up coming into hospital via A&E. I would say that
has been my worst time ever. My lung function dropped right down to 37%. Being
on antibiotics that aren’t my usual tablets has its side effects and when I say
side effects, I mean ALL of them. Whenever my pharmacist prescribes me with medication
he always gives me the side effects booklet despite if I have taken them before
as he knows I literally get all of the listed ones. So, I’m now on a week of
more antibiotics to cure the side effects I got.
In the last two weeks I’ve also had other problems occur
too. Such as my blood sugars dipping to 3.4 or going high to 17.6! The diabetic
team told me there isn’t really an explanation to blood sugars with CF Related Diabetes
and it takes a few years for your body to ‘get used’ to it after diagnosis. For
example, on Monday I had 1 unit of insulin with breakfast and my Calshake at 8:15am
and by 10:30am my levels had dropped to 3.4. So yesterday I had no insulin with
breakfast and found myself having sweats to then realise my levels were 17.6.
There’s arthritis and joint pain down to the CF too which randomly comes on.
This week it’s been coming on each day at around 2pm, so by the time Craig is home
from work I’m walking like an old lady if I haven’t taken any pain relief. It
usually goes again after a few days though so hopefully by Friday the pain has
eased.
Anyway, there’s just a little update of how my week is
going! My real reason for writing this blog is because it is CF Week 2019 which
is a week dedicated to raising awareness of Cystic Fibrosis by kindly donating
and wearing yellow to secure a brighter future for people like me with CF. You
can find out more on the Cystic Fibrosis Trust website. However, I am hoping to
raise a small amount towards the fantastic Cystic Fibrosis Unit I attend at Frimley
Park, who are currently campaigning to expand the CF Unit to a 10 bed in-patient unit with 10 treatment rooms so they can continue to support and care for people like me. As you may know with Cystic Fibrosis, there is a segregation policy
in place where I cannot be around other patients with CF due to risk of
infection. Therefore, with your support, myself and other patients can receive the
treatments needed and feel less stressed about missing home during two week hospital
admissions.
Below is my link..
Many Thanks!