Not To Well at the moment

Saturday

I woke up quite early, for me, about 9a.m. Abi decided she wanted to take me out, well the cheque book really! Went to Doncaster, sun shining, had a great time browsing through all the sales, came back with lots of goodies, collapsed in a heap when I got home and went to bed quite early.

Sunday

A day of rest as usual. Too hot for a Sunday dinner and had huge salads instead. The warm weather has affected my breathing a little, but the warm air does actually relax my muscles and cheers me up when I have a day in the sunshine so I feel better.

Monday

Monday was my second favourite day this week. Mum came round and helped me tidy and organise my clothes in the bedroom (it really needed it!). I can’t tidy up on my own or clean anything and get so exasperated with looking at the dust on the shelves and the TV, so Mum sorts my room out for me. After Mum left, I had a day on the computer and didn’t come off until 9p.m. that night. I have talked to people from all over the country that have either had their transplants or are waiting for them and have finally started to create my own website. The website is called www.helen-miller.co.uk. On this website I am trying to create a resource for people in the same situation as me – living with this dreadful condition. There will be video clips and links to other important websites. I have also created two pages where my daughter and niece are going to talk about their experiences. I am really enjoying doing this as it has got me all excited again. I will let you know when it is up and running. Oops, I forgot to tell you the transplant coordinator phoned me this morning to ask how I was. They only did one transplant last month.

Tuesday

This was the best day of the week. I went to Clumber Park with seven of my family and my dog Amber. We had a great time with a picnic and I hired a free mobility scooter which allowed me to go right around the park. My mum had to rush to keep up with me as I thought I was at Brands Hatch in a race! The last time I went right around the lake, I was on my own feet. I watch the kids and my Dad play cricket. Dad thought he was playing for England so we all had a good laugh. We got home about 6pm and had a pizza as John was late home for work and I can’t cook any more. I had an early night.

Wednesday

I have gone from sleeping through the night to waking up again. I just can’t seem to get my sleeping pattern right. My mum and I took my niece, Beth, out for the day to Meadowhall and had rummage through the last bits of the sales. Beth was great at picking things out for me. On the way home, we popped into ASDA and a lady stopped me and asked if I was Helen as she recognised me from the paper, where she reads my diary each week. She also had a lung problem and likes to read about how someone else copes. I do like it when people talk to me, so if you see me do come and say hello. I am more than willing to answer questions about transplants as far as I know, or my condition. I went home to mum’s house after that, feeling good still and had chicken salad with new potatoes, but I couldn’t eat it all as it just wouldn’t digest properly. I went to bed early as I didn’t feel very well.

Thursday

Oh dear – not well at all today. It is so unpredictable, one day so good, then the next I have hardly been out of bed. By 12 noon, I have taken 3 Immodium and have buckets at the side of the bed. I think it is down to all the tablets I take. It seems to be all one way or the other with little notice. My mum and dad had planned to go to my brothers in Newcastle for my niece’s 3rd birthday, but due to this problem, mum has had to stop at home to look after me, which I feel dreadful about. I am going to try to get up a bit this evening so I will have a better chance of sleeping tonight.

Friday

Helen is not well at all. She has done little yesterday or today other than sleep and go to the bathroom and seems very weak. I called the doctor this morning as we can’t be too careful. He was really helpful and reassured me that I was doing the right things to help Helen, but said to ring again if there was any change. Let’s hope she starts coming round from this soon. (message from Helen’s mum).