Dear diary - Things are tough at the moment -part 1

Dear diary

I haven't updated you for a long time.I didn't think i have anything to say but now i really need you.

The last time I updated was before christmas.I was due to start tpn as my weight was so low and i was having trouble with my tube feeds.

I went into hospital and had a picc line inserted into my arm and then started tpn. It gives nutrients directly into your blood stream bypassing the organs. It doesn't come without risks including sepsis and liver damage.

After a month in hospital i came home.It took a while for my body to adjust but about a month ago i was finally feeling well enough to start living again.

Things were good until march 4th.I will always remember that day.I had my beloved molly put to sleep. Devastated  was an understatement.

I got molly when i first became ill 13 years ago. She was my best friend and always by my side. She stopped eating and the vet thought she had cat flu but could feel an inflamed kidney aswell. I nursed her at home for two weeks.She couldn't really walk so i carried her on my lap in my wheelchair around the house.

I knew i was loosing her but wanted her to pass away at home. It wasn't fair on either of us.She was sad and so was i. It was time to take her back to the vets who thought she probably had kidney cancer.It was time to put my baby girl to sleep. I was buy her side until the end.She didn't even stop wagging her tail.She always thought she was a dog hehe.

She passed away a month before her 13th birthday and left behind her sister mia.

Surprisingly mia has coped very well and is a changed cat. She was always with molly but quite timid around people. She now can't get enough fuss from people.

I have wrote alot in this post so will write a part 2 of my thoughts x 

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

About Me

About Me

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