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.

Back again at last!

Last weekend we went down to The Bear of Rodborough near Stroud. We walked round Westonburt on Saturday afternoon taking photos of the autumn colours, then on Sunday we walked across the common into Minchinhampton and back again before lunch. My knees were complaining and I was very tired but it was good for my exercise program! BOC came up trumps with a concentrator and liquid oxygen for the four days.

My craft work is stalled at the moment because I'm finding it difficult to do things when I get home from work and it's hard to see wildlife in the dark.

Papworth at last!!

I have received my summons to Papworth for testing. I get to stay for three days while they test me for all sorts of things. What I am not sure of yet is whether I get an answer at the end of the three days or whether I have to go away and wait again.

Nick has to come with me as part of the process is talking to the transplant coordinators.

Depressing weather!

The balloons did not go up on Saturday. This time there was no wind. Unfortunately getting up at 4.40 did not do my system any good at all so I have done very little this weekend.

My sister came to stay to see the balloons and to visit the pottery shops. She did at least manage to get the china she wanted. She also stopped off to see Worcester's Shrub Hill station as we had heard about the tiles there in a 'News from the Past' event. Unfortunately it is still under wraps and so she couldn't see much.

I went out for a walk round the village tonight as I hadn't been out all day and I needed the fresh air. It is difficult to exercise when you don't have the energy but if you don't exercise, you don't get the energy. I seem to be permenantly tired at the moment which I think is something to do with depression (probably caused by the rotten weather).

Balloons - hopefully

Last weekend we didn't get to see the balloons - the weather was awful! This weekend it is Northampton Fiesta, so we are having another go tomorrow (Saturday). Northampton is only an hour away so it's not too bad if we don't get a liftoff in the morning.

I spent last Sunday in bed but went to work on Monday and Tuesday. This was a mistake as I then spent Wednesday in bed and Thursday having a slow day before going back to work on Friday. I am preaching at Acocks Green next weekend so I must get down to some preparation. My voice is getting worse and I can hardly sing at all now but I still haven't had my follow-up appointment with the speech therapist. I tried to ring today but there was nobody there. I think the NHS is closed for August!!!

Russian Family History

I am now the proud owner of a second-hand laptop computer. This has the advantage that I can sit downstairs in the evening and use the computer and internet whilst my daughter talks to her friends on msn upstairs. For the last few evenings I have been investigating Russian using cyrillic script.

One of my husband's ancestors had a flax mill in Russia prior to the Revolution in 1917 and we have some letters from him in Russia. They are on headed paper but obviously the text is in cyrillic. Using a cyrillic character set and babel fish, we have worked out most of what it says but there are several fonts and some letters look totally different in for example cursive and non-cursive script. I have also located some pictures of Thomas Tong and his wife in the Russian Archive at Leeds Uni so I need to see if I can get copies of those.

This weekend (weather permitting) we are going to Bristol to the Balloon Fiesta. At the moment that looks like Saturday evening for the Sunday morning launch but who knows?

Back from holiday in sunny Yorkshire

Back at work after a weeks holiday in Stump Cross near Halifax. We had some average weather and some good weather, returning home on Tuesday when the rain started.
We visited the Piece Hall in Halifax where farmer/weavers used to come to sell their pieces of cloth. It has had a varied life including a spell as a fruit and veg market but currently houses a lot of small businesses with the open space in the middle being used as a temporary beach for children and an outdoor stage.

The B&B we stayed in was called Field House in Staups Lane and run by Pat and Geoff Horrocks-Taylor with help from their spaniel, Bronte. We had a lot of family history research to do and spent time in Halifax library as well as Leeds library but still managed some walking and sightseeing. It was lovely to be able to leave the windows open at night and only hear the trees and birds.

Daughter Holly had a great time in Poland with her orchestra but came back very tired after a tyre-burst on the trailer delayed them on the journey home. Never mind, she has nothing to do now until RESULTS DAY in late August.

New wildlife

I seem to have acquired a pied wagtail as a temporary garden inhabitant. He (or more likely she) is on the front lawn next to the roundabout, frequently nipping out into the road to collect a dazed insect. Presumably there is a nest near by but I haven't found it yet.

In the hedge at the back of the house we have a song thrush nesting. I haven't seen any young ones yet but the adult is flying backwards and forwards with beakfuls of grubs. I saw a mistle thrush at St Peters the other week so Balsall Common seems to be bucking the national trend in terms of thrush numbers.

Trying to stay positive.

I seem to have had one cold after another for the last few weeks (or perhaps it is just one which won't go away) and as I have said colds are a problem when you are on O2. I'm still not feeling wonderful but I have a holiday next week and we are going to Yorkshire to do some family history. Teenage daughter will be in Poland with her string orchestra so Nick and I will only have ourselves to worry about!

Great news on the transplant front as another of us Lammies has got to the top of the list and had her lung transplant. That's three this year!!

My little flittermouse is either not visiting my garden or he is coming out later after I have given up for the night. There still seem to be plenty of insects and it's definitely not too cold, but it does stay light later.

The swifts have come back for the summer. I'm not at all sure where they nest because we don't have any cliffs (real or pretend) in the village but they have been screaming overhead on sunny days. Usually they would be out this evening but aren't, so perhaps there is an insect shortage.

Just as I typed that last line my flittermouse went zoomimg across the window. It's nearly 10 so he is later.

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.

Medical and stuff

I had my first speech therapy session on Monday. Last August my voice suddenly started cracking and breaking when I was singing. I thought initially that I just had a cold and that it would settle down again. When it didn't I went to the doctor. Eventually I saw a consultant who refered me to a speech therapist. The theory is that using the oxygen combined with the acid reflux and the strain in my shoulders from carrying the oxygen around are causing the problem.
Anyway, on Monday 6 of us gathered in a small office to be instructed on how our voices worked. Pat showed us a model of our throat and explained how muscles in the voice box change the shape of the vocal chords enabling us to make different sounds. We then looked at all sorts of things that can affect the vocal chords and the muscles and thereby change the way our voice sounds. Then we had a relaxation session - very welcome - and some breathing exercises. Now I'm supposed to be practising the relaxation until my next appointment but I've been too busy!

Daughter's Prom dress is the current worry. Her Prom is on June 23rd and so far I have cut out and sewn the lining but not the dress. Tonight and tomorrow is the annual gathering in Nottingham of LAM Action, the charity for the lung disease I have. Tonight is a social event and tomorrow the more formal AGM and meeting. We are having Professor Corris from Newcastle coming to talk to us about transplant and we always have a question and answer session with Dr Simon Johnson from Nottingham. It will be good to see everyone but I will find it tiring so little dressmaking will be done on Sunday.

Dancing and walking

I went to a wedding reception on Saturday and discovered that my portable LOX tank does not like dancing! After a session on the dance floor it started sulking and only gave me about half a dose every couple of breaths. This can be a signal that it is running out but testing the weight revealed that it was over half full so I can only conclude that it was objecting to being shaken up. Maybe I will have to put it on the floor and dance round it like a handbag!

I haven't been going out much recently but now the weather is improving and it is light in the evenings I must start walking again to improve my fitness. Last night we walked down to The Railway for a curry - I think the benefit of the walking was counteracted by the calories of the curry but it was a start.

Cold!

Having a cold when on O2 is interesting to say the least. I won't go into the problems of gunk from your nose clogging up the tubes but having a blocked nose means that the demand feed does not work too well. Basically the idea is that when you breathe in, one nostril triggers the machine to fire O2 up the other nostril. So if one or both nostrils are blocked........

I am waiting at the moment to be assessed for a lung transplant and am therefore undergoing loads of tests. The latest appointment to drop onto my doormat is for a 24 hour ph test. This involves not eating or drinking for 4 hours before hand, having a thin tube poked down my nose into my throat which is then taped to my face and a small box attached to monitor the acid in my stomach for 24 hours. Nice!! One of the possible complications is apparently difficulty in breathing - as if I don't have enough problems. I tried to ring up to speak to the department only to find they are on holiday for a week. I don't want to turn up for my appointment only to be told they can't do it because of my being on O2.

I'm off to my parents in law for the weekend and the weather forecast is typical for a bank holiday - showers follwed by rain.

London on Cup Final day!!

I'm on the committee of Methodist School of Fellowship and we meet in London about four times a year. Our May meeting this year was yesterday. I decided to catch the 9:13 train but when it arrived from Birmingham it was already full. A young Cardiff City fan gave me his seat but at every station to Banbury we picked up more and more people. Naively I had assumed that as the final was between Cardiff and Portsmouth, there would be no fans on the Birmingham to London train. I was wrong!

We stopped at Wembley and the train emptied dramatically but as the game didn't start until 3, there were still fans who got off at Marylebone. Marylebone was full of people in reflective jackets - police and security people, and lots of metal barriers. I bought myself a pasty and set of for Methodist Church House (opposite Madame Tussards). This is something I have done many times but yesterday I found that I had to stop and eat my pasty and then walk - I don't seem to be able to eat, breathe and walk all at the same time any more. Also my legs are used to walking fast and have difficulty with the fact that my breathing can't now keep up. Another of life's little frustrations.

We have just spent an hour searching the house for a pair of compasses - daughter has GCSE maths tomorrow and I didn't want a frantic panic in the morning so I insisted on seeing that she had everything tonight.

Still plodding along

Saturday's Network day was a great sucess even though I didn't sell many cards. We had lovely weather and a good number of people. On Sunday I suffered the consequences of the long day - I spent the afternoon with my head under a pillow to get rid of a migraine. What we call an 'undercover elephant day'. Those of you of a certain age will remember a cartoon which appeared with Secret Squirrel, featuring a large blue elephant who put on sunglasses so that noone would recognise him!
My daughter starts has her first GCSE exam today but then has none until Monday. Of course, it is due to rain for the rest of the week now but she will just have to revise indoors.
I am finding that having O2 piped around the house is easier to cope with than having to carry my portable everywhere and the rest of the family are getting used to avoiding stepping on the tubing.

Cards and things

I spent last weekend making cards to sell this weekend at another Network event. I am trying to keep this blog positive, but it has not been a good week. Having a chronic condition means I have periods of depression and 'not coping'.

Work operates a flexitime system which means (in theory) that by working a little bit extra each day, time can be saved for an additional day or half day off. At the moment I am finding it hard to manage my 34 hrs a week without adding any extra.

I have at last admitted that I need oxygen piped around my house and it was installed today. It saves me carrying my portable around (or pottering about without it) but having a plastic tube following me is going to take some getting used to. At the moment I keep catching it under the kitchen door......

I will try to be more cheerful next time.

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.

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.