Last night j slept for about 2 hours, I've been manic today, I'm scatty for  the steroids  I'm tired from the antibiotics, my mouth is covered in ulcers,  I'm so pulled from fluid in sore and agitated all the time and although today has been great and positive, yet this is such a rollercoaster.

Mum and dad were up earlier and my mum made me mince and tatties (my fave)  We laughed as my dad spends the most of it taking the piss or being a fake grump wind up merchant and mum and I rise to the bait
many of my nurses now know why I'm the way I am.

It was a great visit  and then I hit a low when  they left and I try to keep myself busy.
And then I thought I had a visitor coming but they never did or actually two but I'm also not going to chase people.

I don't mind if I'm sitting here myself. I have plenty I can do however if you say you're coming just drop me a message and say hey can't do it. simple and with my emotions just now a message saves me a crying spree of tears over nothing.
Evening time and dougie came up #husband



I just woke at 12.05 an dougie was there sat beside me me on big hospital reclining chair and he on rubbish chair just sat holding my hand -  why didn't you go home I asked. . . .
because you managed to fall asleep And i didn't want to risk waking you.
yes everyone I truly found that kind of #love and I'm so fortunate to have.
#illness #cycticfibrosis

Comments

Post a Comment

Popular posts from this blog

Day Two post op

Image
On day two post op Friday I got myself up out a chair and went to move my drains and then had myself a little panic attack. I think the drains reminded me of my lung collapse and I felt like the air was vanishing from me. The nurse walked in and sat with me whilst I apologised and started to breathe better again. The physio came in and got me up on my feet marching on the spot, nice and slow and then lifting my leg a bit further then I had another wee panic attack. The physio said I’ve been through a lot and how well I was doing but I’m just so aware that I have such an amazing opportunity with these lungs that I don’t want to ruin in any way. Day three Saturday My two lower chest drains were removed today, nice to not have any drains, now it’s just two to go. Dougie arrived down on Saturday. I had said there was no use as he wouldn’t be able to get in but he wanted to just come down and wave from the window. He also brought me down my phone and some stuff from the house. Dad had gone
Read more

When life gives you lemons

I'm not someone who dwels in self pity, I always am very aware that I am very fortunate for my position , where many have nit been so fortunate But lately life has been dealing me a shit loads of lemons, like huge sour fuckers one after the other , and I'm feeling pathetic as fuck with it. I was admitted to hospital on Saturday because my kidney function was off and my creatine levels were a bit high at 250. I was phoned on Friday but I had a wedding in inverurie on Saturday and they said it could wait. I was put on iv fluids, to help hydrate them. Turns out it didn't help too much so I was discharged on the wednesday. UNFORTUNATELY BY the Thursday evening my stomach was so bloated that I was unable to breathe right and we made the call with help from my sister to go to the hospital. My amazing team on 7d knew that it just wasn't like me to be in this amount of pain and after xray, ct and a dose of morphine we got a huge ng tube down and the air rushed up.
Read more

Survivors guilt

Image
Survivor guilt  is a particular type of  guilt  that may develop in people who have survived a life-threatening situation.  I've never experienced survivors guilt before but I have heard the term many times when talking about transplant. But for me it's never been an issue.  I have always had an all encompassing gratitude to my donor and their family  but I also know I could not control my donors death and they saved me but I feel joy and thanks at that gift . But lately I've started to feel guilt. Maybe because there have been a lot of near death experiences this year and with this whole liver thing I'm becoming superstitious again, feel like I'm tempting fate and a little ocd. I know in my head that the way I act or what I do won't have any impact on what happens but sometimes I can't stop my head from thinking thoughts.  I'm having to wear wigs now as my hair is still falling out, my big sis looked at me the other night and told me my 200 pound
Read more