Halloween sweet boxes

I made these sweet boxes for my nephews using my silhouette cameo.

Honey I'm home

Laying in my bed at home, I'm reflecting on my hospital experience. I have to say it was extremely hard mentally. I've been in and out so much that I now cannot cope in a hospital environment.

I have 3 days of antibiotics, then my Hickman line got taken out. I didn't see a consultant until briefly yesterday. He is very rude. I was going on a few hours out yesterday anyway but the day before I met him in the corridor and ask if he could see me before I left. His reply was ' I'll see the sick people first'. Charming

When I saw him yesterday he asked there was something wrong with my aseptic technique as I didn't get infections when I had the nurses.

So after a week of not knowing what is going on I felt incredibly alone. From day one I asked to see a counsellor as I wasn't coping in there but she/he never came.

I saw the dietician just before coming home yesterday and she was lovely. Said a lot of people with my condition have frequent infections for some reason. It's just one of those things.

I have made the tough decision not to have another Hickman line placed. I wanted to discuss my options with a consultant but there was no one so I was on my own with the decision. My reasons are that I can't keep living my life in limbo waiting for the next infection. I haven't been tube free in about 2 and half years so it's a new thing for my body. Mentally I can't cope at the moment with the procedure.

Coming to terms with being on tpn is hard. It's a lot different to tube feeds as it's life or death if you get a bug in your line. There is no emotional support. This is why I've said no more. I want some time to be me and get my head sorted out. I see a private counsellor soon which I'm looking forward to.

It's not going to be easy but I will have weekly blood tests to keep on top of things. The hospital said I can ring anytime. It might not work and I may have to go back on it but at least I can say I've tried.

Another tough day in hospital

I woke this morning feeling so terribly low. I think what made me anxious was not knowing what's going on. I like to know the ins and outs of everything.

Late morning my tpn nurse turns up and said there's something grown from the cultures in my line but their not sure if it's cross contamination. She also questioned my aseptic technique at home. This made me feel it was my fault I got an infection.

Eventually I saw a doctor. He confirmed I have a staph infection in my Hickman line and reassured me it's just one of those things and no ones fault. I'm now on strong antibiotics and might possibly lose my line. This is my third line in about 4 months.

I've told him I don't want another. I have to discuss my options with my consultant. I know I have gastroparesis but no one has really explained it to me. I get family members saying I should just eat more. I then question myself and think maybe if I did just eat more then my stomach will respond. Yes I've tried it and I was sick and in agony. I'm starting to think has my stomach shrunk and I just need to make it bigger. I asked the doc similar and he said it's a problem with the nerves that won't get better.

I need the consultant to sit down with me and explain things in simple terms as I feel very mixed up at the moment. I can't live my life in limbo waiting for another infection but not sure if I can survive without my line. I think if a big if I do get a new line then I will wait a couple of months as my body has been through so much that it needs a break. I need a break.

Also asked the doctor if I can see a health psychologist. I haven't yet come to terms with being on tpn. You get put on it then it's cheerio get on with it but there's no mental health support.

Sorry this is so long. Signing off for now and watching a Christmas film x 

Stuck in a world of hope and fear

I'm sitting here in my hospital bed feeling very anxious and wondering how my life has got to this. The appearance of another infection in my Hickman line was very unwelcome news.

When you go on tpn, nobody tells you how mentally hard it will be. Tpn was supposed to be a new chance at life but instead all it does is keep me alive. I don't live I exist.

Going out into the world when I've spent so much time in hospital is a scary prospect. You are thrown out to cope alone. There is no help for the mental and emotional side. The feeling of living in limbo of when the next infection will rear its ugly head. I try and plan things only to have to cancel. 

There is no moving forward. I am stuck, stuck in a world of hopes and dreams that are overshadowed by terrible fear.

All I want is to book a taxi and go far away. Of course I would take my beautiful cat Mia with me x

Christmas box and tutorial link

This week I've been back in my craft room. As I need to use up a lot of card, I decided to make a box to put my brothers present in.

I had to resize it to the gift I got but you can see the tutorial here. http://www.craftycarolinecreates.com/2016/09/large-useful-christmas-gift-box-with.html?spref=pi

Pain I've never felt before

I needed to write this post. Just to get my thoughts down as it's been playing on my mind. 

I can't remember much of my hospital stay but there is one day that I don't think i will forget for a while. It was a Saturday. I was in hospital on iv antibiotics due to an infection around my Hickman line site.
I woke up feeling ok but later on in the morning suddenly I was freezing. Freezing cold to the bones. I was in agony. The pain started in my lower back and went through my legs. I couldn't lay, I couldn't sit. I can't stand anyway. It was something I had never felt before. I cried my eyes out begging the nurses to help. 
As it was a Saturday there were no doctors around. It was hours of sheer hell before anyone could help me. My temp was 39.4, my heart rate 148 and my blood pressure plummeted.  The nurses could only do so much to help. I was hysterical and threatened to drag myself to A and E for help. I was desperate. Usually I never make a fuss and have a high pain threshold.Finally a doctor came, a junior doctor who seemed new and out of her depth. She treated me like I was overreacting and gave me simple oral painkillers. 
I was still hooked up to my tpn but it got turned off she told the nurses to turn it back on. This is a big no no. If your temp is above 38 it gets stopped as tpn feeds bacteria. I would later find out that the infection was in my line to. So every time tpn was turned on it was spreading bacteria throughout my body. She later got a telling off and was very nice after that . Surprise, Surprise.
Later another doctor comes and gives me the right painkillers.Finally it eases. I had to be monitored closely as my blood pressure was terrible and be given a lot of Iv fluid quickly to try and bring it up. I couldn't sit up without feeling sick or sooo dizzy.
It's only now that I'm home and I've started to process it. I was terrified but I'm also terrified it's going to happen again.
My body will take a while to recover. I spoke to my consultant about my exhaustion and he said oh yes because you been through a lot.
I'm frustrated that I can't do the things I want. I realise how short life is. I want to do things now in case I end up in hospital tomorrow, because you just never know.

Hayley x

I'm home from a long stay in hospital

First I apologise if this post doesn't make any sense. My brain is a bit mush at the moment.

I finally got out of hospital last Thursday after a month. I don't remember much of my stay. After going through 4 antibiotics the infection in my  Hickman line finally cleared. It had to be taken out and a new line placed. I hate having new lines as it's very traumatic.I've lost a lot of strength and am currently staying at my parents house.

While I was in hospital. The council came round to adapt my bungalow a bit more.Some doors have been widen and a wall has been shaved abut to allow me better access.This means hopefully I won't destroy my walls, doors and wheelchair anymore.

I'm ready to go back to my house now. It's going to take a while to get myself back to how I was before. At the moment I'm terrified of another infection as I've had 3 lines in 4 months and not sure I can go through it again. All I can do is try to be as sterile as possible.

Changing the subject. As some of you know I love to grow veg in my garden. I was worried about it while I was away, yes I'm weird I know. I missed my sweetcorn growing and proud to say I grew it from seed. It's nearly ready now so here is a pick for you.

Apparently the sweetcorn is the long bit under the fluffy bit. Haha. Sorry not a very good description.  When the fluffy bit gets dark then the sweetcorn is ready. Not long now. Sadly my tomatoes didn't do so well this year and I only had one red one. There's always next year.

Bye for now
Hayley x

Guess where I am

yes in hospital again. I went to a and e as my Hickman line had an infection.Got antibiotics but was feeling worse the next day.Went back and got admitted. I thought it would be a simple in and out stay. I was wrong.

Saturday I was sooo unwell with a temp of 39.4. I was in agony and begging the nurses to help me. I cried my eyes out. Eventually a doctor came and I got pain relief. I had to be checked on every half hour as I was so unstable. My tpn was stopped.

Sunday a doc decided to put saline through my line an again my temp went up. Changed antibiotics.

For the past few days I've had more antibiotics running through my line.Sadly it turns out my site and line is infected with Mrsa so it has to come out. We tried our best to save it. I haven't eaten since my tpn came off so I might be a size 0 when I come out.

On the up side I am in quarantine with my own room and tv and it's nearly Christmas.

Happy flowers

     As it's very dark and gloomy today, I thought I would post some pictures of flowers I drew. Hope it makes you all happy x

The reality of living with a Hickman line

                                      PLEASE DON'T READ IF SQUEAMISH

I apologise that this might be a depressing post but sometimes it just helps to get my thoughts out. If you've read my previous posts you will know that I have a Hickman line. It goes into my chest and stops just above my heart. I connect it to tpn (total parental nutrition) which is essentially my food and goes into the bloodstream bypassing the organs.I have gastroparesis which means my stomach is partially paralysed. Tpn is a last resort.

My line has been ok up until about two weeks ago. The nurse thought it had a scab on it so scrubbed and scrubbed. It was not to bad until the nurse came yesterday. This is the result.

Seeing it like this just brings home how fragile and important my line is. If it gets an infection then it can lead to sepsis which I have fought once already. Also if your temperature goes above 38 degrees then you can run tpn as it feeds the infection. There's also a risk of losing the line. The reality is you can't keep having new lines as you run out of access. No access means no more Hayley. 

So fingers crossed if it's just left alone it will heal.

Depressing post over and you can now open your eyes.

Growing veg and baking bread

I can finally show you some fruits of my labour. Well veg of my labour anyway.

Here are the last of my potatoes. I loved digging for these, it was like a lucky dip. They also tasted lovely

I have now planted some more potatoes ready for Christmas dinner. Next are my Shallots. Not sure they are supposed to be this small. I planted them to close together. Oops. I didn't realise they don't like being friends with other shallots. They tasted nice anyway. I haven't washed them all yet so I'm showing you a pic of the unwashed version.

Next up I made some bread with my carer. Ok she did the work and I supervised. So thrilled with how these turned out. As I can't eat them, they all went to my parents and they loved them.

And just to finish off my post. Here is a random photo of a chicken I took on holiday. I suppose it does fit into the food vibe. Sorry chicken

Have a good evening. 

Hayley x

Held hostage by my bed

Yes that's right, my bed has held me hostage.I've tried contacting the police but they don't see it as a serious crime. It is very serious.

You see it all started when I went to the dentist.unfortunately I had to have a filling and because I have a hickman line( goes into my chest to feed me) I have to have antibiotics.

I came out of the place of torture looking like I'd been dragged through a bush.My body does not cope well with procedures anymore.

After that I've been stuck in bed. To unwell to sit up. I eventually made it to the doctors and it turns out I have a vitamin d definciency. Ok so maybe I can stop blaming the dentist now.

I am slowly getting back to my normal but am in to much pain to sit in my wheelchair for long. So while I've been stuck in bed,I've been doing some drawing. Ta da here they are.

I would say enjoy the weather but maybe not as it's raining here x 

Home grown veg and a Strawberry

Last year my lovely carer decided to move to Australia. I know I know how dare she move to a place with sun sea sand and sexy Australian men.

Anyway, before she left she gave me her tomato plants.I had never grown anything so I was very excited. Every morning I would rush out to check for tomatoes.

Now a year on I have a slight obsession with growing veg.I've reached my limit on space now though so can't grow anything else.At the moment I've got potatoes, onions,carrots,lettuce,sweetcorn,tomatoes and a strawberry plant.

There are a few things I've learnt not to do along the way so I will share them.

1. When you have carrots seedlings in a pot, don't knock the whole pot over with the hose pipe. Rip carrots.

2. Don't put the whole lot of lettuce seeds into one pot.They die. Rip lettuce.

This isn't a very good start is it.

I did end up buying lettuce plants though which survived.

3. Don't leave your potato plant a whole week without water as it starts off like this.

And ends up like this 

Sorry mr potato plant.The potatoes survived though. Yay.

4. It seems a frog likes to live in a potato plant, so be aware when your picking potatoes not to accidently run it over with your wheelchair.Sorry mr froggy. Rip

5. Strawberry plants. I am having a battle with the birds. I left a strawberry to ripen and was saving it before I picked it. I came rushing out of the house super excited only to find it had been half eaten. I was a very sad hayley. But i managed to get one strawberry and here is the evidence.

See I don't kill everything. By the way it was delicious.

Hope you all learnt something from my failures. Have a good day.

Hayley x 

reflecting on turning 33 and getting grey hair

So next week on the 12th July it's my birthday.I will be the grand old age of 33. Yikes. How did i get to 33 and not feel any different to when i was 18. The grey hair is creeping in but luckily my boobs aren't big enough to go down south yet.

I've been doing some reflecting on the hopes and dreams i had when i was younger. Life isn't how i imagined it would be. I thought by this time i would be married with children and have a good job.Well thats whats supposed to happen isn't it. Were the movies lying to me all this time and not many people have their happy ever after.

This post sounds depressing already but i will chuck in a few more depressing things to really get the vibe going.  I became ill at 19. If i hadn't of become unwell then i wouldn't have gone to uni at 23 to carry on what i left off at 18. I'm confusing myself here.

I then lost the ability to walk five years ago and then my stomach stopped working about 3 years ago ,so i've been tube fed/ tpn dependent for 2 years. I have dated in this time but i never met the right person.I don't have alot of confidence as i think i'm alot for a person to take on.

I also won't be having children as i don't think it would be fair on a child, but its not all doom and gloom.

Although my life has taken a different path than i imagined it has taught me so much. I appreciate little things like flowers growing or birds singing. I make the most of my good days as you never know when your going to get sick.I appreciate family and never take things for granted. I think i have a good life and overall i can say i'm happy.

Even more happy that i got i'd for a scratchcard.I burst out laughing but the cashier was serious.

So to end my speech, here is a photo of me in my new glasses.My carer calls them my geek glasses haha.

I hope you all have a good day

Hayley x 

Scandinavian inspired print and Skillshare

So I was browsing online for craft classes and i came across Skillshare. You pay a small monthly free and you have access to over 16,000 classes. Some of the subjects covered are Photography, Drawing, surface pattern, watercolour and sewing.You can check it out here https://www.skillshare.com

While i was on skillshare i discovered a surface pattern class inspired by scandinavian design.I really enjoyed going through the process and coming up with a final design. I learnt so much in photoshop and illustrator.

Here's my pattern 

I think i'm all designed out now so have decided to do abit of sewing.Yesterday i went to the nec for the stitching show.I was very restrained and spent the total sum of £9 hehe. I'm trying to use up what i have in my craftroom, although i did have a lovely day out.

Hayley x

Studying a make it in design course

Many years ago I completed a degree in Surface Design. I always knew i wanted a career in design but possibly produce products with my prints on ( not my hand prints of course)

When i left uni, i did a days work experience at a design studio. This was where my confidence was knocked and i just wasn't good enough. The course i did didn't teach adobe illustrator which is kin of the industry standard now so i was already at a disadvantage.

Sadly after this my health declined so i put my dream on hold. Not to long ago i came across an online course called make it in design https://makeitindesign.com . There are 3 modules and each teaches you all about the world of surface pattern.It gives you exercises to do, industry knowledge and also technical workshops in photoshop and illustrator.

I'm really enjoying the course.I don't have a plan for what i want to do at the end as my health is so unpredictable. I'm loving the journey though.

That's enough of me waffling on. Here's a pattern i made that i think would be great on children's products.

Lots of love, Hayley x

I'm ready to start blogging again

As the title says.I'm ready to start blogging again. Still need to get around to doing my blog header oops.

Brief update healthwise. Last time i blogged i was still in hospital. My old hickman line had to come out as it had dislodged and the one my local hospital put in was to short. I also had my peg remove ( feeding tube into stomach) as i know longer used it due to being on tpn and fed into my blood stream.

Unfortunately when the was removed i developed sepsis.Luckily antibiotics were started within an hour so i made a full recovery. I spent a month in hospital before coming home. I am now starting to feel abit better and starting to do things.

I am doing an online courses or courses at the moment so i may overload you with patterns. Also i've been in the garden growing lots of veg.It makes me so happy seeing things grow from seed.

Mia the cat is doing well without molly and let me take a few photo's of her with my new camera.

She's not always this cute.She brought me a bird yesterday.Naughty mia.

Anyway bye for now, i hope to be more consistant in my blogging (and maybe spelling)

Hayley x 

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 

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