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