Skip to main content

Gone without me 😢

So right now Hubby and the kids are flying over Europe on their way to Germany. 



There will be an empty seat on the plane where I'm supposed to be sitting but instead I'm in my hospital bed typing this. I thought I was ok with it until I got texts from the kids... As I read them I struggled to hold back the tears. 


The top one is from Hubby replying to me. Then the second is from Big Fella (I've used the pink tash to block out his name as I like to keep the kids anonymous) The third one is from Big Girl. 


It's hard knowing that they're going to have a great week away. Of course I want them to have fun- it's just I would rather be there with them. The weather this week in Germany is hot, hot, hot (even hotter than here in the UK) and I had been worrying about dehydrating- well I don't have that to worry about now!


People have said to me "you'll be able to go in a few days if you're discharged" and in theory they're right. If I don't have a line infection and feel well enough then yes, I could fly. The problem will be whether I can get my TPN arranged. Like I've said before it's not just about throwing a few meds and some clothes in a suitcase. I have to transport a 2kg bag of fluid for every night I'm away plus the pump and equipment needed to connect and disconnect the feed to my Hickman line and just to make it extra challenging the feed has to be kept cold. This means it has to be specially packaged to go on the plane and this was all in place for today. Because I don't know when I will get discharged I can't tell the team that provide my feed when I would need it to be packaged up specially again and they need at least 24 hours notice just to get the ice blocks frozen! And it's a bank holiday so they will no doubt be shutting down on Friday until Tuesday morning effectively meaning that unless I know tomorrow when I'm going home and when I'm going to be flying I doubt very much it will be possible to get it all sorted. 

Never mind. I will look forward to chatting to the kids over FaceTime and them telling me about all the exciting things they've done. Next time I want a holiday I'm going to get Hubby to sort it all out without telling me so my body doesn't have the chance to rebel and spoil it all! 

NB x


Labels:

Comments

Post a Comment

Popular posts from this blog

New car smell

After everything that’s happened over the last 5 weeks not many days have been good days but today was. I will write a blog post about everything that happened but that’s for another day!  Today I went to pick up my new motability car and got to breathe in that new car smell. I am now the proud lease holder of this lovely Volvo XC40.  To be honest, part of me wasn’t sure whether to write a blog post about getting the new car with everything that’s been going on with the disability benefit reforms. There’s been so much written about motability cars on social media but a lot of it is misinformation and hate and that made me nervous to write this post. But I figured that most people reading it are friends and family and understand my need for the car. But for those that don’t let me explain a bit about how the motability scheme works.  I am lucky enough (or unlucky enough depending on how you look at it) to claim PIP- personal independence payment. This benefit is designed t...
Post a Comment
Read more

The germs have got me 🦠

Being on azathioprine, influximab and prednisone is helping to control this recent Crohns flare up. But unfortunately they work by wiping out my immune system making me more susceptible to all the bugs doing the rounds. I refuse to stay at home and be held hostage by these meds though- for me they are there to give me my life back, not to make me a prisoner in my own house, so the inevitable has happened and I’ve got a cold.  ‘It’s only a cold’ you might think, but with no immune system to fight it off this cold has made me pretty poorly. Yesterday I couldn’t get out of bed and felt so, so ill. I was coughing and struggling to breathe so I’m pretty sure I’ve got a chest infection too. But I can’t confirm that because apparently even being immunocompromised with a suspected chest infection is not enough to see a GP these days!  I spoke to the receptionist at the GP surgery this morning who told me that all the urgent appointments for today were gone (and this was at 8.25am, aft...
Post a Comment
Read more

Disability benefits cuts

So in Rachel Reeves spring statement earlier this week it was confirmed that there will be massive changes to the benefits system including the way that PIP is assessed and changes to the health element of Universal credit.  As someone who is receipt of both PIP and ESA disability benefits I find this whole situation…  🔲 terrifying  🔲 baffling  🔲 rage inducing  🔲 disgusting  🔲 [all of the above] I honestly cannot believe that a LABOUR government is looking to balance the books of the country by taking money from some of the poorest and most vulnerable in our society. This is the sort of thing I would have expected the Tories to do but when I voted Labour I honestly thought that not only would they look after and protect the neediest but they would actually make things in our society better and fairer. How wrong I was. Looks like I’m going to have to get some ‘Fuck Labour’ merch to go along with my ‘Fuck the Tories’ stuff I already own!  Now I do b...
Post a Comment
Read more