One cello, two lamps and three sets of music.

Feeling very tired now. One of the problems of a lack of oxygen and an excess of willpower is that when I stop, I really stop! On Sunday, the choir were singing in the morning service and the younger children were using clay models they had made to act out the Nativity. This involved Nick making up a long lead to allow Hannah to video the scene at the front but still be connected to the gubbins at the back which then projected it onto the screen. It was very much a 'seat of the pants' service but all went well. Then home to eat a lovely roast dinner - the blessings of an oven-timer and a husband who can operate it.

In the afternoon, Holly and I set out for Acocks Green with one cello, two lamps and three sets of music. I used it as an opportunity to get Holly to drive in the snow and she managed very well. A short rehearsal and then candlelit carols at 4. At 5.15, after a cup of tea and a mince pie (or two) we set off for Dorridge with one cello, one set of music and two lamps. The choir were only singing a few items in Dorridge candlelit carols - we did our carol concert last Sunday - and Holly was going to sit in the congregation. 7.30, time for more tea and mince pies before setting off for home.

There was no Mustard Seed on Monday due to the weather and so I walked into the village with Holly for her dentist appointment. I did some shopping while she was poked and prodded and then back home where I tried to encourage her to start one of the four essays she has to do before January 13th. In the evening she went out to the Solihull Scout Network Christmas do and I drove to Heartlands to sing some more carols around the wards. The roads were OK apart from the traffic jams.

Today I drove us all into town as there were cheques to pay in and Holly was meeting up with some friends to see a film and stay overnight. Nick and I abandoned her there and then went to Tescos to do the final bit of shopping and fill my car with fuel. By the time we got home my body was telling me I needed to stop. Tomorrow's planned trip to Bicester to be a LAM lady that lunches has been cancelled due to weather and illness so I am going to have a quiet day - as long as the buses are running, otherwise I will need to go and fetch daughter!

Right now I think a cup of tea, the Telegraph Toughie and a long hot bath followed by an early bed.

Great lunch but tired after.

Yesterday I met up with some friends who also have LAM for lunch. We had a good meal and chat, catching up on all the latest. Clare L had her transplant on the 15th and is now out of ICU and detached from chest drains etc. We decided that we must get together more often so Lucy will arrange something for late January.

Next Monday I am off to see the Occupational Elf to be assessed as to my ability to carry on working. I want to cut down my hours but HR recommended that I am assessed first. Hopefully I will be able to cut my hours down to 30 which will mean I have all of Monday off.

LAM meeting

We had a good time at the annual meeting in Nottingham on Saturday. Lots of information about the Doxycycline trial which we have raised money for and which will hopefully start soon, and an opportunity to discuss problems and issues amongst ourselves. We also had a discussion about home oxygen with Alison, a community respiratory nurse and our usual question and answer session.

The prom dress is also going well. On Sunday I was able to cut out the main material and start sewing it together and on Monday I finished sewing it together and pressed all the seams. Tonight's job is to fit the zip and then look at how I attach the lining to the outer.

My voice seems to be getting worse. I was able to do my dramatic reading in church on Sunday but when I rang the garage today to arrange for my car to be MOTed, the person I spoke to thought I was a man! It is very varied - some days I sound normal but other times I am very croaky and I cannot see a particular reason for it.

Notebooks

Well, I survived my 6 hour fast and barium x-ray today and I have worked out how to post pictures. These are some of the notebooks I have made which I sell for LAM Action. LAM is what is known as an orphan lung disease - basically it is not so common as asthma or cystic fibrosis, so we need to raise money ourselves to fund research.

Why am I on oxygen?

I have a condition called LAM (well really it's called pulmonary lymphangioleomiomatosis) which affects my lungs. I was diagnosed in 1992 but did not need oxygen until 2007 because I have the slow progressing version of the disease. I'm not particularly sporty but do enjoy walking which has become increasingly difficult. I can manage well enough for normal, day to day stuff - around the house, at work, even down to the village - but all day walks are beyond me now, even with oxygen and uphill is a struggle. My daughter has plans to get me back on a bike this summer. She says that I am the exception to the rule that you never forget how to ride a bike - that was after I had wobbled down the close and back on her old bike. As my portable oxygen container is in a back pack, I should be OK once I get my balance.

I'm going outside later to time when the bat appears from the bat box. Apparently that will help the experts decide what type of bat it is. We call it a flittermouse which is a Devon word for bat.