I don't really know where to begin with this
blog. Life has certainly tested me the last few weeks but I guess that's just
part & parcel of growing up.
I decided to give Facebook
a break & come off it for a while. I was getting a lot of trouble from a few
people, maybe they thought they were giving me some home truths, I don't know,
but how they did it just broke me & I was making myself extremely ill. I
deactivated my account & thought I would have some peace, although this
kind of back fired on me as people thought I had blocked them & was getting
messages left right & centre. Some obviously very nice ones, asking if I
was ok & that they missed me, but some, again, very harsh, abrupt messages
that made me feel like I was doing something wrong. It's a real shame the world
has come to this, the fact you have to give an explanation for everything you
do when it comes to a social networking site. I missed talking to people, don't
get me wrong, I share my blog of course, & without Facebook it wouldn't get
the hits it gets today, so for that I am very grateful, I have a lovely
following of people that have been with me since day one of my journey & I
love to share the pictures of my beautiful little animal family with them too -
but the hassle & all the shit that comes with it, I did not miss one bit.
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| October Nails - 'Sextober' |
After a couple of weeks I
decided to come back on & was hit with the devastating news that a fellow
CF sufferer, Jodie had lost her fight very quickly, she was just two years
older than me. I felt like shit that I had missed the fact she was so poorly,
but I know whether I was on the page or not, no one could have pre-empted the
fact it happened so suddenly.
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| Sleepy Times, Kaos & Cookie BFF |
A few days later, Kenna, a
17 year old girl from America with CF, who had a huge following, lost her fight
also. The same age as when my beautiful Kayleigh, lost her fight back in 2003
& then yesterday, I woke to read the news that Louise, had finally passed
away after fighting a huge battle over the last couple of days. Louise was 22,
she lived in Scotland & I spoke to her very regularly. She was the
sweetest girl, a complete crazy cat lady with blue hair, mummy to two kitty's
she just adored & she was completely in love with my Cookie monster... I
would mainly post pictures just so it would brighten her day, she would share
them on her page & tell all her family about them & anyone who passed
her hospital bed. Louise had had her lung transplant & recently suffered
rejection, she had radiation therapy but just couldn't fight no more. I was
absolutely heartbroken to read her friends post telling the world she was no longer
in pain.
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| Onesie Snugs With My Boy |
Nine times out of ten, we
don't ever meet our CF / transplant friends, what with cross infection / bugs
& distance it just isn't what we would do to put ourselves or others at
risk. However, we know exactly what each other is going through, the pain, the
heartache, the struggles. This shit never gets an easier, watching young lives
being picked off one by one, people we possibly talk to more than some of our
own family members just because we are in that 'circle' & we understand one
another. It's really hard to stay focused, I feel guilty for living at times,
but then smack myself so hard because I am one of the lucky ones...
I am still here, my donor
saved my life & I narrowly escaped death again last year after my heart
failed. I just feel the world is a very unfair place, with all the nasty
bastards on this planet, yet this illness takes so many young beautiful lives
that just want to make a difference, have fun with friends, find their soul
mate, settle down & have a family. Be 'normal'. Rest in peace my darling
girls, although I needed to make this promise to myself, the heartbreak of
three young lives taken this last week as certainly put my mind into
prospective and I am more determined. I will NOT take shit from anyone anymore,
those who choose to bully me do not deserve my time, I sit there night after
night, crying & worrying about what I have done to deserve it. People are
always going to have their opinions, and not everyone is going to like me but
that is their problem not mine & I refuse to let it get to me any longer.
It's unfair on my husband to see me in such states & for my 'real' friends
who have to pick up the pieces when someone I thought was a friend has upset
me... So, onwards & upwards, tonight I will raise a glass (more likely a
cup of tea) & light a candle for three wonderful women, and all those who
have lost their battle & those who continue to fight on.... Sweet dreams
xxx
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| Me With 'Ma Julie' |
Now the emotional part is
out the way, I will just update you on my recent trip to Harefield last
weekend. I travelled up on Sunday & left my beautiful family behind,
(another thing that breaks my heart, although it's only for a night they really
are my life) after six hours in the transport & a totally numb arse, we
finally arrived & I went to visit my two friends on the ward who had
recently had heart transplants, they both looked absolutely amazing &
although they have a slow recovery, I have every confidence they will have an
exciting new life awaiting them when they are ready...
I then went back to my 'boiler'
room for a couple of hours to do all my medications & watch some TV before
Keith (who had a heart transplant) & Bea his fiancé, came & took me out
to a Harvester for dinner. It was a lovely evening, made a real change not
being stuck on the hospital grounds all night & it was so great to see
them, wonderful company! They are getting married next year & I cannot wait
to share their very special day with them....
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| A Beautiful Gift From My Hubby Before I Left For Harefield, |
Unfortunately I didn't
sleep a wink all night & felt like shit the following day for clinic. It
took six attempts to squeeze some blood out of me, eventually out of my foot (I
am desperate for my port now) I had an echo to see how my heart was doing &
my lung function had dropped, quite considerably from the day before, 1.33 to
1.18 Fev1. I was gutted, I wasn't staying, I was so focused at going home that
evening I just couldn't believe it was all going tits up! I was seeing Dr Carby
later on & he's great at looking at things from every angle so I went to
chill for a bit in the waxworks & not get uptight. When I was called in
later that day I explained that I felt fine, I wasn't chesty, lung function had
been stable beforehand & that I hadn't slept & had been under a lot of
stress recently. My bloods were ok & he took my word for it as he knows I
would call straight away if I was having trouble. He suggested I speak to the
psychologist from Harefield to help with any recent 'emotional' problems I have been having, I need to do some
physio for all the pains in my chest I am getting recently & wants me to
return at the beginning of December if I don't need to come in beforehand. I
shook his hand & was over the moon to be leaving, I just couldn't wait to
get home later that night.
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| Cookie When I Got Home From Hospital |
The trip has really taken
it out of me & I haven't been feeling 100% I don't think it's all physical,
a lot of it is down to my mental state but I really don't want that to hinder
the hard work I put in to looking after myself so this week has mainly been at
home resting. I am still really enjoying my martial art classes, the Tai Chi I
adore & find I can do this when feeling completely crap, the Kung Fu / Self
Defence I absolutely love but need to feel a lot better in myself to get
anything out of the class so I just take each week as it comes. I haven't had
much chance to see friends recently but that will come with time. Instead, I
have mainly been enjoying cosy evenings in with the family, cuddles, candle's
lit, crappy weather outside & just watching some guff on TV, but to me
that's just perfect.
Not long until Halloween,
one of my favourite times of the year, I am gob smacked that a year ago I was
making my Halloween kiddies bags for the EDCF charity, 2014 has just flown by.
People have asked if I am making them this year & to be honest, I haven't had chance to even think about
doing anything this year, but hopefully 2015 will be different & I can come
up with something just as exciting to do.
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| Our 'Morning Selfie' |
Think that is about it for
now, I am going to spend a much deserved day with my animals, lots of cleaning
to do & lots of cuddles to go round...
Thank you for taking the
time to read as always xxxxx
