Saturday, 26 November 2011

Ink in my skin

Getting a new Tattoo the week after next! Excited as I am going with my brother so he can get his first. He will probs faint. I am getting lyrics (I know, I need to stop covering my body in quotes) This song means a heck of a lot to me. It helped me get through chiari, meningitis and 2 months in hospital. I listened to this on repeat anytime I wanted to sleep or switch off from the busy hospital. This is my marking to chiari, not the awareness ribbon, but rather a quote that sums up not only my journey but many many other people who are fighting this terrible, incurable condition!
"you gotta swim for the music that saves you when you're not so sure you'll survive" This song did just this for me. When I was in pain and crying, when I was so tired from medication being given every 2 hours round the clock, when I was in my dark place, when I was in a dexamethasone rage. This song was the soundtrack to all of that!

Getting away

So, I am taking a nice break to Dublin. I leave tomorrow and am going for 5 nights. I am looking forward to it. It will be nice to have some breathing space!

In other news, I have been doing physio now for a little while. My physio is trying to get my range of motion in my neck sorted, and wants me to be seen about dizziness and balance. She also wants me to try hydrotherapy.
I have my neurosurgeon appointment on 13th December. SCARED!!

Monday, 21 November 2011


I became acutely aware today that I have been neglecting my blog recently. I have to admit this is not the only thing I have been neglecting. I have been copping out on life recently. I have been feeling pretty down in the dumps that my surgery hasn't worked, but also, maybe stupidly, I feel embarrassed. I was so sure I would be fine after surgery, totally sure I would be "ME" again! This, alas, has not even been close to the case. I am in worse pain and cannot even be bothered to get out of my bed most days, days when I do manage to get out of bed that is such an effort that also getting dressed is almost out of the question unless totally required. People are honestly getting sick of me, sick of me being sick, sick of me not living my life in pace with them and sick of me being in pain and moaning!

So, rant over, I am seeing a new private neurosurgeon on 13th December so hoping he will help me out!!!!!

Post op MRI scan!