Im not home

Most people will be expecting this blog to be from home, but I haven’t made it home yet. I had a home visit Thursdays with the OT's, Physio and nurse, where I was taken home by ambulance and we went through my house and what they could do for now to make life easier until we are moved.

Whilst at the home visit the OT started to go on about a property available in Sidmouth. The thought of moving to Sidmouth originally scared me alot and I said out right No, I’d be away from my family, granted only 15minutes down the road but its a lot further than 5seconds, having my Mum and Nan on my door step feels quit important to me and I don't know if living in Sidmouth they would be able to see me as often. Having given up so much in the last few months and having so much of my independence taken away from me but in the same time in a way to keep it, anymore changes I have to make feel that more scary. I am and have been so isolated at home anyway and I realise that when I go home this time, I am going to be that much more isolated and reliant on people. I will be eventually having careers coming in to help with physio, showering, cleaning, food preparation, when it is all eventually sorted and I don't know if such a big move will just isolate me more.

The property is a bungalow, fully adapted for disabled access and brand new, it is a dream property, it will help my health so much, but I’m so scared to make such a big move. I’m still mulling the thoughts over in my head and I am coming round to the idea after a brief trip to Sidmouth to have a nosey at it from the outside but everyone was being so push about it, I was at my point of breaking, the stress levels had reached maximum and it felt like I had everyone nagging and to be honest they were, it was nagging out of concern but nagging never the less and I lost it for a second swore and told them that even though I can only walk a few meters I was close to walking out, I don’t know how and I don’t think it would have been possible but I verbalised the thought, in an attempt to show my distress and anger at the continual nag assault.

Like I said I am coming round to the idea now and it could really work, but sometimes people just have no idea, there not the ones who are having to re adjust there whole lives and I can't just do that all in one second, I have to come round to the whole thing in my idea and my choices, what little choices I have left slowly and well thought out.

I have to say Stuart through the whole of this has been amazing, I know all these changes have got to freak him out as well but he’s doing it all so well. Telling me that the house is my choice, if its going to help me lets do it, but if I’m going to feel isolated and lonely then no. Its hard though, when all the decisions are up to you, I’m not just deciding my fate, but Stus as well. What if its the wrong thing? what then?

I still haven’t explained why I’m still in hospital, its more a technicality really, No home IVs were ordered in time, they suggested I do home IVs the old fashioned way, I don't think my doctor thought this through when he suggested it, I’m struggling to shower, to feed myself, to get up and down the stairs, but apparently waking at 6 then 8 and drawing up IVs from scratch would be possible. Hummm possibly not. Then I have IVs at 2pm 8pm and 10pm that means those many trips up and down the stairs as well as for food and that’s if I can stay awake in those times to concentrate enough on doing IVs along with coping with the ridiculous amount of physio I have to do and the temperatures I’m still getting. So I’m staying till Monday.

Today my mum came to see me, we decided to escape the hospital, any trip where we escape is done with, wheel chair, blankets (to sit on for comfort or to wrap me up when I get a temp as I go really cold) oxygen and enough of it. It feels a little bit like a military mission. We went down to the range and Matalan. The range, the lift was broken so we couldn’t venture upstairs and that really annoyed me. In Matalan Mum decided to buy me some new pj's, I love getting new pj's something about it makes me much happier then when I buy new clothes, probably as I spend so much time in them, I know I will get the use and I like the feel of nice new pj's. Unfortunately for me I have to try everything on, I’m long in the body and leg and often end up with tops only reaching my belly button or ankle swingers. I was spiking a temp at this point and when ever I have a temp, I am extremely breathless, so me and mum in the disabled changing room, with a breathless me trying to put on the pj's, managed extremely well surprisingly but that was the end of the trip really, all my spoons were gone. Back to the hosp, we went to paracetamol up and get into my new pj's Yay. My temp turned out to be 38.1 heart rate 147, sats were ok but this was because id accidentally knocked my 02 up to 4 litres instead 2.

After the paracetamol kicked in me and mum went and sun bathed and mulled over my life and situation, We talked about how things are and how quickly we’ve gotten to this point, we saw it coming, but it still seems like its here quicker then we ever thought. A topic of conversation at the moment, is death, funerals, how people are to cope with out me. How bizarre that at the same time I’m planning my wedding, I’m also planning my funeral. Now I’m not saying I’m planning on going anywhere, but anyone in my position has to think of these things and Iv started jotting down things because I know I may not get that transplant in time a realisation that has really become aware to me with what I like to refer to as the recent decline.

Well Iv possibly bored you all to death with a super long blog now, I hope you've all managed to stay with me till the end. Please don't forget to leave me a comment.