Pari has a Problem!

….Now is not a good time for anything medical to go wrong!….

So you can imagine how freaked out I became on Sunday when, arriving at the hotel in London, I went to have my neb and Pari was just not behaving himself. It appears the on/off switch has developed a small issue-well, a large issue-one of temperament. He simply decides when he wants to stay switched on-and when he wants to not be switched on at all.

Julian thinks it is the contacts inside and they probably just need a squirt of some of his magic alcohol based cleaning fluid. But I do not want him tampered with in any way what so ever, (Pari, that is, not Julian!). I seem to be able to make him work by lightly touching the on/off switch. He then appears to work normally, as this video, shot earlier this morning when he was being surprisingly well behaved (isn’t that always the way?), shows:

Oh well, I guess I’m not overly worried, as he does work. It’s just that he is my favourite travel companion, neb-wise, and the thought of him doing a total splat on me this close to a trip would mean I would have to lug the Medix (big blue toilet of a neb machine), and I already have enough oxygen gear to transport without having to make space and extra allowances for a huge workhorse neb to come. Baby Omron is always in my handbag but he is best for prophylaxis and not emergency treatments!

….Sigh. These things are sent to ‘try’ us. Sigh again!….

My School Year in Stats!

….I cannot quite contain my happiness and relief this morning!….

It seems this Academic year has flown by-and interestingly enough, when talking to colleagues yesterday, many of them agreed!

I also seem to have performed better than ever this year as far as my long term illness and frequent absence goes. There may be several reasons contributing to my now good attendance record, but none as important as the fact that this year, more than ever, I have loved my job. I’ve had a new Head of Department-the most amazing lady who has been a rock of support for me in every second of my days. I have also had a GTP (Trainee Teacher) working alongside me and teaching several of my classes from early on in the year, which has meant that my time table has been less than it would or should have been. She has not just been a superb young teacher in the making (she was passed with an ‘Outstanding’) but she has been the most immensely wonderful company and a true friend.

So to Sue, and Lyndsay, if either of you read this, may you both blush and burst with pride!

But of course, I have had my moments this year, too. I’ve been suffering from an increased amount of air trapping-weirdly and particularly on Wednesdays!. I managed to sprain my ankle way back in October, and hobbled around on crutches for 2 weeks. But the most marked improvement in my treatment has come this term since early June, when I was put on overnight and now all day oxygen. There is much truth in saying that at the time in the school year when I was most likely to be flagging at my worst, I was beginning to feel more rested after better nights’ sleep, and more energy and less SOB during the day. what an ingenious turn of events that turned out to be. (And I continue to be much more stable with my new oxygen regime)

Now for some stats!

I work 3 days a week: If I have 2 trips to the restroom and ride around on break duty etc, I probably scootie a km a day.

Therefore I have scootied approximately 123 kms around school this academic year!

In the 3 terms I have had a total of 3 days off sick. I have been given leave 3 times to attend hospital appointments. I have missed 3 days due to sources out of my control (that volcano!) and this term I have also missed two early morning meetings, and two 1st periods due to my asthma.

Not a bad record for someone who has a rather difficult to control asthma condition.

(But I don’t think I can attempt to count up how many migraines I’ve had-that is too depressing!)

People have noticed how happy I seem. Well, how could I not be-I have the most marvellous colleagues as mentioned above, and I love my job. I’m really proud of what I’ve achieved though, living with chronic illness isn’t easy and I’ve managed to clock up a better track record for illness than quite a number of my general colleagues!

….It’s been a great year, but Oh Boy! I am so glad I now have 5.5 weeks to recover!….

Asthma UK: Severe Asthma Report

….This is Fighting for Breath….

It is a report that was released just this week, on Thursday 15th July 2010. The report aims to reveal the hidden lives of people living with severe asthma and is published by the UK’s leading asthma charity, Asthma UK.

You can download and read it here.

I was asked to participate by their media/PR consultant, last weekend, but I ended up not getting my act together as they wanted quite detailed answers to a whole gamut of questions, and I wasn’t feeling very well with my own asthma last weekend, so missed contributing. However they have told me they would like me to contribute to their next report and the media/PR consultant will be in touch.

The questions they wanted me to answer were:

o Discrimination (had I experienced discrimination because of my asthma, for example from members of the public or healthcare professionals?)

o Services (am I getting the support I need to cope with my severe asthma – for example access to physiotherapy, counselling support, allergy services or care support?)

o Employment (am I able to work at the moment? Had I had problems with employers in the past because of my asthma?)

o Benefits (had I had problems finding out about benefits I was entitled to, or problems claiming?)

o Treatment by A&E staff or my GP/consultant (had I had any problems with NHS staff taking my asthma seriously / following my individual treatment protocol?)

o Education (had I experienced any problems at University or school because of my severe asthma? Did the Uni/school have an asthma policy and train staff on asthma?)

It’s a huge pity that I failed to get back in contact with them and never replied any further to their email. I feel I could have offered a lot on all of the above questions. Especially as my location in London makes it highly unlikely that I would be able to contribute to the SARP research, even though we travel to the US, but only to California and the studies are more or less on the east coast!

….Who knows, you may well read my name in print speaking out about this horrid illness, in the future….

Elliott is snoring!

….I shot this little video of Elliott snoring this morning….

You met my newest member of the mounting anti-asthma cavalry , on here, yesterday, but I thought it would be cool to show him in action. Excuse my early morning lungs and grogginess!

….The sound of the bubbling is about to lull me to sleep now!….

Introducing Elliott (my Home O2 machine!)

…..Introducing E.T.’s big brother, Elliott….

Here he is bubbling and snoring away!

And here are his space age controls!

The Oxygen company gave us 2 models to choose from and Julian went through all the spec and we both liked this one for my needs, better, eventhough it turned out to be the slightly heavier of them. But it is now upstairs in my ‘home hospital room’ so weight doesn’t matter (23lbs). Elliott is an Invacare Perfecto2.

He snores and purrs gently, (37Db) and is currently bubbling too, as I am using a bubble humidifier with him, as I am not yet used to constant continual flow O2 at home. I have been using cylinder O2 on constant when I have been flaring and needed an emergency boost, but little E.T. my POC is pulse dose, and I actually prefer pulse dose for many reasons, not the least of which being it does not dry my nose out! I also like to hear that I am breathing and therefore still alive and kicking!

This will be a whole new experience as well as a continuation of the new world opened up to me in the short time (since late May/June) that I have been on overnight O2 and  pretty much using it 24/7 /PRN.

My SATS after my night on 2.5L constant were 96% but the moment I take it off and move around they drop and sit around the high 80s/low 90s on air. This, for an asthmatic, is unusual, but my lungs have been damaged. Being on oxygen is allowing my body to repair itself and prevents my heart from over working, because as with all the nebs and the drugs, I have a very high heart rate and have been getting a few random palpitations this year.

I actually tried nebbing my morning drugs through the oxygen machine which is a huge benefit in an emergency. It needs to be turned up to maximum then though, well above my usual flow rate. This is what they do with me the instant I arrive in the Emergency Room. Many hospitals in the UK neb through the plumbed O2 supply, as they can’t supply so many neb machines, particularly in my local hospital.

I had one stretch of 4hrs solid sleep last night, so deep that I did not hear my phone go off 3 times, and had Julian (at work on nights) very worried. The difference in me in the mornings after a night on oxygen is unbelievable. I have energy because my body has rested and I don’t wake up with that dull CO2 headache, unless it’s a migraine, and I’ve had enough of those recently, due to a tonne of stress, the humidity, thundery weather, and at this stage of the school year, complete and total exhaustion.

So that was my first night with Elliott. It was a shame J wasn’t home to monitor things, but he is still on Nights. We have been like ships passing, this week, coupled with some highly necessary about to start emergency building work going on at home, still another week and a bit of school to trudge through, and a marked change in the weather. My lungs and head are currently having a battle with my will to function!

Elliott is great, I already love him- he will join the family of hilariously named medical equipment, keeping me going in  this crazy, stressful, severely asthmatic life of mine.

….I’m off to school later, with E.T. for the day!….

12 of 12: July

….Today is a typical 12 of 12 day for me. No wedding this month-I can’t believe they’ve now been married exactly a calendar month, and no School for me either, as I don’t work today, so  just a mundane Monday with my car service thrown in….

1) I woke up in a more comfortable Zone-truly GREEN but that followed on from quite a nasty asthma attack yesterday evening. I think the adrenaline of last night’s World Cup Final contributed to my recovery around 10pm when Spain and the Octopus won!

2) As I said, this is a Mundane Monday 12 of 12, and today happens to be our weekly rubbish collection. It is 7am, and it has already all gone. So even though it looks a mess when put out, we don’t have to stare at it on the drive for too long!

3) With Julian working a Night shift all week, I have to try and get lots of the jobs done before he comes home and goes to bed. It sort of shifts my day too as I find myself preparing all the food and meals before I’ve even had my breakfast. I box his up for him and he takes it to work and  eats it in the middle of the night, which is in effect his meal time. Today it is chili con carne and salad.

4) And this is my finished salad-which I will plonk a carton of cottage cheese on top and have a baked potato and beans with!

5) My non mundane task today is to take Falcon (our big merc) in for his service. I’m not waiting around for him-it makes the day too long and stressful especially as I wasn’t well last night and I’ll be doing this on my own. I have to drive him over to Mercedes Benz world at Brooklands in Weybridge. But they’re loaning me another merc and I’ll drive back tomorrow to pick him up. This is the pile of stuff I have emptied from his boot and my door pocket!

6) So I drove round the M25, the 23 miles to MBW in order to drop off my car

7) I know you can’t see it in this picture, but I love the way the silver star revolves on the top of the building

8  ) Having returned home in a round trip of exactly 2 hours, it looks very strange to see a silver car the same as Falcon sitting on our driveway. Maybe this one is a Pigeon!

9) I went for my swim to destress and give my lungs their gentle and necessary work out. It was quite cool in the pool today.

10) In fact, I got so chilled swimming my kilometre, (40 lengths) that I spent a whole 6 minutes in the desert like dry sauna warming up afterwards!

11) So after some food and a bit of a rest back home, I did an inspection of my garden. It has almost been too hot to walk round my garden checking up on my vegetables these past few days, and I was astonished by the size of my pumpkin patch….

12)….and the fact that in the tubs by the front door, which face south, I now have ripening tomatoes.

It’s been a profitable day. We’ve had some rain-just one shower, but enough to make puddles! And I am pleased the car has worked out to be straightforward, and I still managed to get my swim in! Must rest up now, whack the old O2 on, have a neb or two and settle down for an evening of TV and a crossword!

….All Photos were taken with my new, shiny iPhone 4G. If you’d like to read other 12 of 12′s, go to Chad Darnell’s Blog….

Not those Forms Again?!

….Do you remember all the fun and games I wrote about here?….

Well, it’s getting towards that time again, and yesterday I started the ball rolling by filling in these forms and taking them to my GP to sign.

It should be fairly routine by now for her as well as for me, and I have recently redone all the tests too! But last trip, in April, when I supplied her with the form (only one then) in March, she  accidentally lost it! And a week before we were due to fly, we had to hurriedly redo it and drop her in another one. I remember my series of Tweets regarding J saying he was not going to leave the surgery until he had the afore said signed and completed form in his hand, and was willing to stage a sit in!

So yesterday he dropped them in again, and the receptionist recognised him! And there were various amusing remarks between the two of them about not losing it this time, and ‘do you think we could have these back sooner rather than later, this time!?’ To which she replied ‘Don’t worry, I’ll put them in the proper place this time, and I’ll enter it on the Dr’s spreadsheet so she knows to hurry up and sign them!’ We wait patiently!

And if you think I am being cheeky and asking my GP a favour, I will enlighten you that her signature in two places on two forms is about to cost me £40, I could even work it out how much a letter if you like, as although she is Polish her name is no more long than complex!

This trip and from now on, there will be two forms, enough to confuse my single blonde brain cell, but I am sure she’ll cope. I now how to have documentation to cover my carriage and use of a POC. Two of our flights are so short they don’t supply airline O2, so it’s a good job I now have my little E.T.

I just hope I get my completed forms back sooner rather than later, it’s always a huge weight off my mind, that and getting all the drugs ordered and packed, and I did that this week too-well, phoned my pharmacist, not sorted or packed….yet! I still have over 2 weeks of school to get through anyway, this trip is not entirely imminent!

….The summer is a busy enough time to fly, even without all these added complications to pre-arrange!….

Happy 4th July Weekend, Everyone!

….Wishing all my friends in the USA and those around the world who celebrate it, a really Happy 4th of July!….

Here are some memories of our celebrations last year, 2009.

I will be baking these cookies again,

And I will be sticking little flags around the house and garden, as usual (this was last year’s hanging basket!),

And on Monday (July 5th!) we are having our BBQ for my Family and J’s Mum.

He is sadly working until midnight both days this weekend so we are having to postpone our festivities until Monday, but that just gives me more time to prepare and bake a special flag cake.

….Where ever you are, and whatever you do, have a great Holiday Weekend!….

Was I right?

….Irritations in my life often come from people’s insensitive remarks…..

Yesterday at school, a friendly colleague asked me how I was, to which I replied with a smile, “extremely tired and just hanging in for the end of term”

Unfortunately she did not follow this with any amount of a) sympathy or b) empathy, and I got a reply of “How can you be tired when you only work 3 days a week?” (and there was a degree of emphasis on the words in italic)

Well, I could have snidely come up with something along the lines of …..”but you only teach ********” (insert lame subject of your choice)

Instead, I spurted out “I may only be at school 3 days a week, but I spend the whole 7 days just trying to stay alive”

And off I scooted….

….Was I right to say that, or was she?….

(PS: Sometimes I fail to see any amount of humour in anything, and especially when I am so tired and under par-I get it from my Mother!)

Oh, and if the person who said that just happens to be reading my blog-yep, it did upset me.