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 

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