Network Conference

Today I have been in Birmingham (UK) for a meeting of Women's Network. This meant a slightly less frantic dash out of the house as I didn't need to leave until 9:30 - usually it is closer to 7:30!! Unfortunately my husband has got to catch a 6:40 train in the morning so tomorrow will be somewhat different. People at Network are getting used to me and my oxygen now so I get less comments and questions about it and my back was much better today. I find that when carrying the oxygen backpack, I tend to lean forward, which curves my back and makes it ache. I have found the blowup pillow and half inflated it provides lumber support in the car. This makes me sit up better and alleviates the back ache.

Flittermouse and tea!

I gave up waiting outside for my flittermouse last night as I was cold and so when I came in, it appeared. Tonight was warmer so I went out later - about 8:40 - and stood listening to the birds (and the traffic) and saw him or her appear at about 8:55. I think it came from round the edge of our house rather than out of our bat box but I'm not sure.

Today has been a 'tea day'. I have only managed to do things in short bursts, requiring a cup of tea (or two) and a rest in between. This is often the pattern on Saturday as I recover from the week at work.

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.

Bats!!

I was going to leave my next post until tomorrow but outside my window there is a bat flying about! It is often there in the summer but I thought it was too early and too cold yet. Perhaps we are in for a good summer after all.

Hello

I have been on supplementary oxygen since Jan 2007. I am starting this blog because when I looked on the web for other people's experience of being on oxygen, I could only find examples from the US where the situation is very different than here in England.

I have a concentrator (with humidifier) which I use overnight and a portable which I fill with liquid oxygen (LOX) for use during the day. Going away is a problem as I have to get a holiday oxygen order form (HOOF) sent off at least two weeks before which is alright for planned breaks but a bit more difficult for impromptu weekends! We get round it by putting my concentrator and my spare portable cylinders in the car - the LOX tank is too big to transport. This summer we are going to try a bed & breakfast place in Yorkshire which will be the first proper holiday with oxygen. I'll let you know how I get on.