Me and my feeding tube

This week it's tube feeding awareness week so i thought i would do a blog post about me and my feeding tube.

I have a condition called Ehlers danlos syndrome which is a connective tissue disorder. It has taken my ability to walk but also effects my organs. My stomach has failed due to gastroparesis, which means it can't empty properly due to the muscles or nerves not working.

I went into hospital in June last year to be put on tpn ( which is where nutrients go into a vein) and bypasses the organs. I wasn't well enough to undergo the operation to have a feeding tube fitted.

My first operation to put a feeding tube in failed ( it is usually done in endoscopy). So i had to have it put in surgically.

My tube is called a pegj. It is basically a tube within a tube. One tube goes into the stomach ( brilliant if you want to empty your stomach from eating loads of chocolate hehe ) . The other tube goes into my jejunum which is where i am fed.

This is the equipment i use to feed. I am hooked up 24/7

My feed and pump.

Giving set which the feed comes through, syringe i use to flush my tube to prevent it blocking and sterile water as the intestine cannot take normal water.

A couple of questions i often get asked

Q. Can you still eat

A: yes but very very tiny amounts, maybe a tablespoon of something and then i am very full

Q: do i get hungry or miss food 

A: i don't get hungry very often and i get very full on a tiny amount.

I don't miss food. I think i am lucky in this respect. I love food i love baking but i never fancy eating it. Weird thing is i love to know what everyone else is eating hehe.

Q: Do you stop going out for meals with family

A: no i love going for meals. Often my family will order something and get an extra plate. This means i can have a spoonful of potato or something so i am included.

Q: is it for life

A: yes probably, but i don't think about it as i take one day at a time.

My feeding tube has saved my life. Without it i would not be here.I hope this has explained a few things. Feel free to ask any questions x 

Sewing and Photo's

Afternoon everyone,

I have been quite busy lately and exhausted because of it. I went back to hydrotherapy.Then i started back at the gym. I then went to a sewing class (not all in the same day). I now have an infection in my peg(feeding tube). So have some antibiotic cream to kill the little enemies.

Oh oh oh, i have a new camera. I've been wanting an Slr forever but couldn't justify buying it. But i took the plunge or rather my poor bank account did and brought it. I have a confession though. I'm scared of it. Its like an alien with loads of buttons. Looks lovely in the box though 😂😂

Anyway here is a new picture from my photography course. Just playing with backdrops still and took this in terrible lighting. I am learning though x

As i am addicted to sewing lately, i decided to stitch a house. First attempt and i forgot to put the ribbon on, oops

Backdrops and Photocraft

Hi all,

Recently i signed up to an online course called Photocraft. Here is the link if you want to check it out http://www.photocraft.org/

It is aimed at crafters or craft business and teaches you how to take better photographs to style your products. There are 6 modules to work through and it includes so much information about styling your images. I have just finished module one and decided to play around with a couple of backdrops.

Eventually when I've completed more of the course, my photos hopefully will look alot better or more professional.

 

I made this cushion for a friend and photographed it on a white background.

Next i got abit more adventurous

 

I then tried a different angle.

 

I quite like the photos on a textured background and I'm eager to learn more. Watch this space x

 

 

Things I love in my home

Happy new year. Sorry It's abit late.

Things are going quite well at the moment, fingers crossed it stays that way.

Anyway, for the blog post i wanted to show you the things i love in my home.

As i love baking, i thought i would show you my kitchen first.

As you can see, i love vintage. These units are original but have been painted to update them. The big unit even has a metal cupboard in it, i think it was used like a fridge.

Next is my other favourite room. My craftroom. 

I spend hours in here. This is a picture of it when it's tidy x

What items do you love in your home x 

Washi tape and cupcakes

Ok, I confess that I may have an addiction to washi tape. It's so versatile and looks very pretty. I spent ages wrapping up my Christmas presents with it. I also made some decorations out of clay to add something extra to finish it off x

I really enjoy baking. When I went to Center Parcs in November, I learnt how to decorate cupcakes. I thought they looked so good that I decided to make some to give as Christmas presents. I would rather do this than buy something that someone doesn't like. So here they are x 

Christmas decorations and cards

i've been happily making christmas decorations this year. I love to work in felt as it's so versatile.

I also made some christmas cards. I wanted to make loads but life gets in the way.

If i don't blog before christmas. I hope you have a lovely time

Hayley x 

Sometimes christmas isn't always a happy occasion

I'm laying in bed trying not to forget tomorrow. Three years ago my dad died of a brain tumour. He would of been 60 tomorrow.

Although i love this time of year, i also hate it. I moved house on the 23rd of December and dad died on the 24th. I remember the phonecall from my sister in law at 3pm to say he had passed away. He only survived 10 months from diagnosis. He could of had a good 3 months if he didn't have the treatment. But he didn't and was gone months before he died.

This time of year brings back sad memories of his illness. We didn't have a great relationship. My parents divorced when i was a baby and remarried. I call my stepdad dad because he is. When dad was ill in hospital he refused to see me, because he had issues with my mum.

It was extremely hard but one thing he told me before he died was that he loved me and was proud of me.That's what i was waiting to hear for 27 years.

So i will raise my glass to you dad and wish you a very happy 60th birthday x