Skip to main content

FaceTime- a blessing or a curse?

The kids came to see me today which was lovely. We had a little picnic outside despite the fact that my whole body felt as though it was made of lead and hurt from top to toe. 

During the picnic I had needed the loo so shuffled slowly there with the kids. "No need to come with me" I told Hubby "of course I will be ok". But I wasn't. 

After being on the loo I felt dizzy and stumbled when I walked. I sat in the restaurant while the kids went to fetch hubby. When he arrived I stood up to walk but after a few steps the room started to spin, everything seemed to go black and my legs went from under me. 

As I lay on the floor I could hear the kids shouting "Mum! Mum! Are you ok mum?" And I lay there in my husbands arms feeling helpless and guilty for what my kids had witnessed yet again. 

I was taken back to bed, had a little bit more time with hubby and the kids and then it was time for them to go. A little while later the weekend doctor came to see me and decided that I'm dehydrated and need IV fluids. 

You see I haven't had any IV fluids since Thursday afternoon. This is the longest period of time I've gone without them since I started having them last year. But after nearly 72 hours my body just couldn't last any longer. 

So I currently hooked up, lying in bed writing this. 


If told the kids to FaceTime me, thinking it would be a good way to keep in touch. So when my phone beeped not long ago I was expecting to say goodnight to the kids. I wasn't expecting to see my Big Fella sobbing and asking when I would be coming home. 

My heart broke into a million pieces as I saw the tears roll down his cheeks, his chest heaving from crying so much. "Mummy I need you. When are you coming home?" he cried. 

And I had to tell him that I didn't know. That I had to speak to Dr7 tomorrow and see what he plans to do. That I don't know if I will be home for his birthday. That I'm sorry. That I hate being in hospital and that I hate being away from him. 

"Mummy. I need a cuddle. I need you!" he cried. And I told him that I had given daddy the power to give mummy cuddles and that Daddy would tuck him in tonight and give him a special mummy cuddle. 

Do you have any idea what's it's like to see that? Do you have any idea what it feels like to hear your child cry like that. And to not be able to reach out and comfort them? To be the cause of their heartbreak? 

Let me tell you. It haunts your every waking minute. It's with you when you close your eyes at night. The guilt overwhelms you and you worry that you are screwing up their childhood. That they will become emotionally disfunctional adults and sit in a therapists chair in 20 years time and blame you. 

And then my phone pinged. It was a message from Big Fella (his are in grey, my replies are in blue)


And then another


What do you say to that???


So I tell him again that I have to talk to Dr7 in the morning and I tell him I love him. 


Really? One word that tells me that my son wonders whether I love him. What child should ever wonder that? 

Maybe facetiming wasn't such a good idea. I think they can cope better with my absence when they don't see me. If they don't see me then it's almost like they forget that I should be there and they just carry on with everyday life. And as much as I find that thought upsetting, I would rather that I get upset than them. 

NB x

Comments

Popular posts from this blog

Light at the end of tunnel

I’m sat writing this blog post in St Marks, the specialist bowel hospital in London. So much has happened in the last few weeks; it’s all been a bit of a whirlwind. But I finally feel like there is some hope at the end of the tunnel. Let me tell you why.  At the beginning of June I was admitted yet again to QMC in Nottingham with huge amounts of pain, my bowels not working properly and just feeling generally unwell. I had only been home a couple of weeks since the admission in May but I had been feeling so rubbish most of my time had been spent in bed. I had tried everything I could to stay at home but the pain had become so bad I was barely able to stand or take a few steps on my own.  I had expected to maybe be in for a week or two to get stronger pain meds and get back on my feet but I ended up being in for almost a month. They put me on morphine injections and ketamine but then stopped them when my heart rate dropped to 30 beats per minute and my breathing to 7 breaths a minute. Th

The light at the end of the tunnel is a train

Last week was a busy and pretty crappy week for me health wise. I had to go and have blood tests done with the nutrition nurses and I had two hospital appointments; one with the gallbladder surgeon in Nottingham and the other with colorectal surgeon at St Marks. I was hoping to have at least one surgery date to write in the diary following these appointments but I came home empty handed on both occasions. Here’s what happened.  I began noticing over the last few weeks that I’ve started feeling really crappy. I’m feel lucky to have been at home for the last 6 months and I have been the most well I have been for years but it felt like things had shifted slightly recently but I couldn’t quite put my finger on it. But years of being sick means I know my body and I can tell when something isn’t right. I have been feeling permanently exhausted and having way more bad days than good. I’ve gone back to spending 2, 3 or more consecutive days in bed, unable to do anything but watch tv and sleep.

The wrong size line

I’m on the M1 heading back to Nottingham after a road trip to St Marks to get my line repaired. But this is me, and as usual it wasn’t a smooth ride. More like a bloody shit show. So what happened? Let me tell you… After being admitted to QMC in Nottingham on Sunday with a broken Hickman line I was taken down to Interventional Radiology on Monday afternoon to get my line repaired. Firstly, I couldn’t believe it was happening so quickly and secondly I didn’t want to get too excited because, well it’s me, and usually things don’t go according to plan. And sadly I right to rein in the excitement.  When the doctor came to consent me for the procedure it was for a replacement, not a repair. I assumed he had made a mistake so I told him I was there to get my line repaired and was definitely not there for a new one. He looked at me and said “I hate to be the bearer of bad news…” and that’s a sentence that never bodes well. He then went on to say that they didn’t have any repair kits and that