Christmas makes and tutorial links

Hi everyone

Today I want to show you what I have been making for christmas.  The first photo is a lovely box that I have put sweets into for my nephews. In the original tutorial, the box was made to hold a jar of chutney.I think this is so versatile that you could put anything in it.  Heres a link to the tutorial

The second tutorial is for a wine bottle holder. I never know how to wrap wine to make it look prettier than it is. This tutorial is perfect to jazz up a present and is quite easy to make.

That's all for now.I hope you enjoy these tutorials as much as i did.

Lots of love

Hayley x 

The second part of my hospital journey

and I hope it will be positive.

My health has been slowly declining for months now. For those of you that don't know I am fed via a pegj tube into my intestines. I haven't been able to tolerate my feed which means my weight has plummeted and i have very little energy.

The next step is to start TPN. which is where you get fed into your bloodstream rather than going through your organs. This is a very last resort as there are alot of risks. One of them being sepsis.

I have some many things I want to do and I really hope this will allow me to. As i will be going into hospital very soon, i have been trying to get all my Christmas shopping done and wrapped so i don't have to worry about it.

Have you finished your Christmas shopping or even started.

lots of love

Hayley x

Recent makes and tutorial links

Sorry i've been away again. Since my last post i have seen my consultant in london. I finally have a cause for my stomach pain. Its something to do with the nerves so i am starting medication and possible having injections into my stomach. Yikes.

I have also been busy in my craft room and here are my latest makes x 

I signed up for a course on craftsy. It was called Fab felt holiday crafts. They had loads of projects and easy to follow videos. I made this cute little gingerbread house. Check out their classes here 

I designed this owl myself and i'm quite pleased with it.

More makes to come soon x 

Catalogue of errors in my hospital care

I've been debating on whether or not to publish this post. I haven't felt ready but my blog is all about my journey so here goes.

I thought i would write this blog post to just get my thoughts out. I suffer with Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Severe Gastroparesis -peg fed, and bowel issues.

I've been having trouble with my pegj since feb. It got changed as it had flipped into my stomach. I was sick and after that have had severe pain when feeding or eating. It came to a head when i could no longer feed through it.

I went to A and E thinking my peg had flipped so had an xray. They weren't sure. I had to stay in hospital as they wanted to do an endoscopy.So i Was nil by mouth from monday until wednesday as i was told i was to have endoscopy. Doctor decided not to. Kept nil by mouth until id seen consultant. He never showed but i was told i wasn't nil by mouth now. Thats 3 days of no feed just a few bags of saline for no reason what so ever.

Thursday my cannula stopped working so had to be taken out. More fluids were prescribed but never given. The doctors refused to give me anymore iv fluids.
Usually i can eat a tiny amount but i haven't been able to. I take tiny sips of water. Maybe 50ml in a day. They say it has to go through my peg which it can't.

Everyday was the same. Hook up, to much pain, then unhook. I was only tolerating 18ml an hour. They started it at 20ml. First night was hell. Had morphine. The dietician wanted me to go up to 30ml. I compromised and said 25ml. However she still wrote down 30ml so i refused to do 30 and stuck to 25ml. I didn't think the night could get any worse. The pain was horrific. I was crying. It was equivalent to the pain i felt when i had my peg surgery. 

Everyday the feed rate is being upped. 25ml 35ml 45ml 55ml. Never got to 55ml and been tube fed for a year. The dietician put me on a low fibre diet. I'm lactose and gluten free anyway but at low fibre means theres nothing suitable on the menu except jelly.

I was to be put on a food, fluid and urine output chart. Urine output got documented once. Food and fluid chart were filled in wrong. If you looked at it you would think i ate and drank well. But i was only getting 300ml a day from my feed. Luckily i went through it with a nurse who wrote down i need iv fluids.

My meds have been messed with . My anti sickness was swapped for a drug i refuse to take due to severe side effects. My reflux drug was also stopped. 

I Saw the consultant who said he thinks the nerves are over sensitive. Put on amytripline. Sent to phycologists to see if it was all phycological. We came to the conclusion it could be my peg placement as thats when the pain started when it got changed in feb.  In the morning i was given a calcium tablet.No one  could tell me why. I ask consultant. He didn't know so crossed it off said i didn't need it. Turns out my calcium was low but when back to normal the next day.

My hospital doesn't have the equipment to do the tests i need. My consultant in London thinks my bowels have slowed down so i'm having tests at the end of the month. I've argued with my consultant about how he can say theres nothing wrong when he doesn't have the proper tests to prove other wise.

Still refusing fluids, still not tolerating feed. There not happy i'm refusing morphine. It sends me to sleep all day which is no quality of life, had to have a catheter as my bladder stopped working. Probably because i couldn't pass much urine.

Things came to a head yesterday with some junior doctor who's probably only a day out of university. I was ready to discharge myself. The hospital is killing me. I said i may aswell go home. I can be in agony there to. They disagreed. Said what if you get dehydrated at home we cant treat you. You are not treating me here. 

My other points : why are you sending me back to the phycologist when they haven't found anything wrong with my mental state. But I'm happy to talk to someone about this hospital. 

If you scan my stomach you wouldn't find anything wrong but it doesn't work.

I was asking for my discharge papers. He said he would advise against it and i could get very unwell and you wont get the care and its a risk. I said I'm at risk being here. They said they will treat me when my bloods are out of whack. It shouldn't get to that point. It shouldn't get to the point I'm very ill. Ive lost so much weight.

My tablets hadn't been ordered for two days. Today i have found out they have stopped my anti depressants. Everyone knows you can't just stop them.

I'm all out of fight now and very thirsty x 

I went back to see the phycologist. Apparently i had requested to see him, which i hadn't. He said to complain to pals about all the errors. 

Finally been discharged on next to no calories. I am very pleased to be home but feel so very unwell.

Meet mr giraffe and an update

Evening all,

I have been missing again, sorry. Before i update i will start by showing you something i made.

A giraffe. 

I made him for my new baby cousin and took some photos for my photography course.

Now for an update. Things are hard health wise at the moment. As some of you know I'm tube fed but have been struggling with my feeds. Ive started loosing weight again. I'm waiting on tests on my bowel to see if its slowed down.

I'm terrified of ending up in hospital as it was hell last time. Just got to carry on i suppose.
Also ive recently started to go to physio privately. This is helping but im feeling abit overwelmed. Its very hard when your so exhausted and people say you should do this and that. Or they say your doing so well.' Yeah but i feel like shit'. I expect alot of myself as i feel other people expect alot of me. I then end up burning myself out and feeling such a failure.

Anyway in other news, i have a new car hoorah. It means i can drive my wheelchair into it without transferring. Its a godsend. 

I haven't been able to go in my craftroom lately. Maybe i'm all sewn out. Hopefully be back in there soon.

Thats it for now
Love Hayley x 

Sewing with simplicity

I have recently discovered Simplicity sewing patterns and have fallen in love. They have a wide variety of things to sew from dresses to craft.

The first pattern i started with was the Simplicity pattern 1153os. This one has quite a few things to make in it. I decided on a makeup bag.

This was my first attempt and i am quite pleased. The only downfall was it didn't have a lining which i didn't realise until i had finished it. I then had to take it all apart again.

 This project gave me a good excuse to get my camera out as I'm still doing my photography course with Photocraft which i'm throughly enjoying. 

Have you made anything later or taken any photographs?

Love Hayley

Baby lambs and Naughty goats

I've been away from my blog for abit as my health hasn't been to good. My feeding tube has been playing up again so i was in and out of hospital. It's still not right but I'm coping.

As i have alot of hospital appointments, I wanted a treat so i decided to go to a farm. I was like a kid in a sweetshop hehe.

I visited a farm near me called West lodge

I checked before hand that my wheelchair could get round. I could get round the animals but not the park but that's all i really wanted to see. It was such a fun morning seeing all the animals and took my mind of things for a while.

Here are some pictures i took.

A giant rabbit. You would need a big hutch for him

                       Beautiful baby lamb. I had fun feeding and stroking it

Very naughty goat trying to steal my blanket!

                                                             Sheep selfie hehe

                   Have you been anywhere nice lately?

Sewing and more Sewing

Hi all

Yes I have been sewing again and loving it. Here are my recent makes.

I made this for a mother's day present. The instructions are in my new favourite book, Half yard Christmas by Debbie Shore.

As i have lots of scrap fabric that i want to use up, i decided to make these tissue covers.

You can find the tutorial for these easy makes by going here 

Thank you for reading
Love Hayley x

Always follow your instinct when it comes to your health

just a quick update from me.

I have been out of action with a chest infection. Was just getting over that when my feeding tube came out.

I think i sat on it and the tube that goes into my jejunum came out. I panicked as without it i can't get food or water. Off i went to A&E. I was seen at about 7pm and had to stay overnight as there wasn't a doctor to put it back in. I was moved to the ward at 9.30pm but there was no bed as they were waiting to discharge someone. I had to wait in the corridor until 10.30pm.

I had no sleep as was next to someone on a heart monitor. Doc came in at 5am and another one followed. I got moved to another bay at 5.30am.

I saw the doctor in the morning who pushed my tube back in and i went for an xray. I was then discharged.

However i knew something wasn't right. It hurt to put my feed on and i couldn't get enough calories. I told my dietitian and she said well it must be in the right place if the doctor said it was. She tried to get my notes from hospital. I was getting weaker and weaker, so Thursday mum rang the original doctors secretary who put it back in. She said to go to gp who can fast track me through the hospital.

Off i went to gp who was horrible and patronising. She said it must be in the right place so maybe im constipated. Uh no as i new my bowels. Then she ordered to have a urine sample for a uti, no again, i do not have a urine infection, something is wrong with my tube.

Last resort was back to A&E. We waiting about 5 hours to be seen but there was a lovely doc who treated me. He wanted bloods but it took 10 attempts, eeek. I went for an xray again. He then said i have to stay as need a ct scan. I said is it really neccessary. I only need a new tube. Eventually a gastro doc saw me and said my tube my have flipped back into my stomach and they will book me into endoscopy. Phew i got to go home.

So today i had my endoscopy. And guess what. My tubed decided to dance inside me, its supposed to be in my jejunum but had coiled back on itself and was feeding into my stomach. This is why i couldn't feed as my stomach doesn't work. I now have a shiny new tube.

I am very glad i followed my instinct and pushed for a new tube regardless of my gp and dietician doubting me, as if i didn't i would of got very sick. I am also very grateful for the lovely doctors at the hospital for treating me x

Stitched laptop case

I am really into sewing at the moment so i thought i would make a case for my laptop.

I usually sew small things but decided to venture out of my comfort zone and go abit larger.

It took forever to make but I'm quite pleased with it and i got to take some pics with my new camera hehe.

What are you making at the moment ?

Love Hayley x

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 ๐Ÿ˜‚๐Ÿ˜‚

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

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 

About Me

About Me

My photo
Loves textiles, stitching and anything cute. Daily battle with ehlers danlos syndrome, gastroparesis and tube fed x