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 

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