Sunday 05/10/14
Today it is hard to find reasons to be strong, but that
doesn’t mean I give up- that means I fight even harder to find them.
I have slept most the day, waking up for medication to
settle my symptoms and to keep me comfortable. There is no doctors on a Sunday,
therefore anxiety is slightly less than usual and I am able to close my mind
without six million thoughts attacking me at once.
I feel like I may be entering another ‘flare up’ of
exhaustion. I am tired all the time, but these ‘flare ups’ as I call them are
more than just tiredness. They are physically and emotionally feeling unable to
do anything at all because there is not a single ounce of energy left inside
your body. They are the times when you have no choice but to just sleep,
because the exhaustion makes it too hard to lift your head from the pillow. It
makes it too hard to roll over alone.
At the same time you battle the chronic pain that lingers in
every corner of your body, you wish that there was a way to push it to the back
of your mind, but in reality it is ALL you can think about because the pain is
so intense you want to scream- if only you had the energy. Instead I wimper in
my sleep. Mum is often woken by my crying whilst sleeping, it is obvious the
pain doesn’t even go away at rest.
Today has been one of ‘those’ days. The days where I hate
the world, I hate my life, I hate everything. I soon have to snap myself out of
that thinking because it gets me absolutely nowhere but feeling worse mentally.
Sleep at least brings my mind rest, even if my body doesn’t.
I am struggling with my new medication regime, it puts me
through added pain on top of my normal pain first thing in the morning and last
thing at night. I have to keep telling myself “the pain will ease Chloe, the
pain will ease.” But that doesn’t stop the tears, the sickness, or the pain at
that moment, it doesn’t stop that period of distress. I am just getting so worn
out by it all and I will admit that. I will admit this is not easy. Is being
poorly for anyone, ever easy?!
I am praying that tomorrow brings tolerance and peace in my
heart. I am seeing my consultant and I really hope we can be proactive
together, with Mum. I am trying my hardest I just hope she recognises that. I
get so scared I am letting people down.
Ultimately this isn’t about my consultant, yes I care what
she thinks but this is about me but ultimately this about Me. Me and my loved
ones and the ones that love me. But ultimately, Me. That is not me being self-centred
or selfish, it is me putting myself first. Something I don’t do very often and
should definitely do more.
I am not angry at the life I have been given. Sometimes I
get upset, sometimes I get frustrated, sometimes I cry and sometimes I shout.
But I know I have been given these challenges because I am strong enough to
deal with them, because I have the power to learn from them and so I can help
others in the future. The world doesn’t just need people with academic ability.
It needs people with life experience, with wisdom and advice. The world needs
people with knowledge fuelled empathy and sympathy. I would love to be healthy,
but I know that I am lucky to be alive and that this is going to make me an
incredibly strong, resilient person in the long run. I have the most amazing
family and friends that some people are not blessed with. I am incredibly lucky
in that respect!
Health wise I am going into the week with an open mind. With
hope that the new medication is going to help in the ways the doctors hope and
the ultimate goal of getting back into a health state where I am able to live
supported at home. Obviously this isn’t all going to happen in a week, but the
foundations can be set and glimmers of those plans can be seen and I would love
to be blessed with that.
She desperately wants to try and get me off IV medication and TPN and back to feeding and medication using my JEJ tube. Okay it wouldn't be overnight but I just don't see how this is going to happen? I can barely get 30mls down my JEJ a day when I would be needing more that 30mls and HOUR to be using my JEJ tube effectively. It would mean constant agony, which is so so exhausting and I just don't see how it will work. Sometimes I feel like you just have to go along with it and show them it doesn't work, because at least then I can say I tried. Because I want nothing more than to keep going. I don't give up- that's not the sort of person I am!
My allergic reactions have improved leaps and bounds which shows that this medication is on the right track, I just hope and pray it helps calm my gut down also like the doctors think it will. I am the first person to admit that patience is NOT my strong point, and I need a heck of a lot of it right now!
The building project is bubbling along in the background, I should have more news on that this week to share with you all! Congratulations Dominic and Lily (my architect and his partner) on the birth of your little boy Felix, he is perfect! Dominic is getting stuck into being a Daddy right now, yet is still so kindly sorting out plans for me, I feel truly blessed.
I have managed to get off the ward and to the faith room a few times which brings me great comfort and peace in my heart and mind. It's amazing how the hospital is so loud and chaotic yet you walk into that special place and there is just an overwhelming silence that peacefully fills the room. No beeping machines, no dull TV's, no chatter, no footsteps. Just beautifully decorated rooms for different cultures and a wonderful multi cultural central room with intricate modern stain glass. I often sit and write in the prayer book, It has become a routine for me to see how the 'regular' prayer book writers are doing and praying for their needs as well as my own.
That is all for now folks, My eyes are closing again.
All my love,
Chloe xx
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