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

About Me

About Me

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