Almost Two Thousand Hours!

July 21, 2011

…..or 1,999.96 hours, to be exact!….

I noticed the counter on Elliott my big oxygen concentrator, at about 1am, when I was waking up and having a bad asthma night and switched the light on.

It would have been quite nice if I had woken up right on the 2,000 hour mark!

Incidentally, I’ve always seemed to have this knack of looking at the car odometer when it is changing to a significant mileage, or looking at my watch when it is changing exactly on the minute. I noticed the counter in the night and just thought “almost two thousand hours”.

…..Doesn’t seem very much though, when you calculate I’ve had this concentrator for over a year, but I do use the other one rather a lot too!….


About Being Breathless and Helping Your SOB.

July 18, 2011

…..So many people keep commenting about how SOB they are, so I thought I’d put a few of my thoughts and experiences in a post…..

Breathlessness is not harmful, but it is very unpleasant and frightening. I find it is important for me to still remain as active as my illness allows me to be even when I am very SOB.

  • It is very common for my SOB to make me feel frightened and anxious. But I know this can then make my breathing worse. I try to remind myself that breathlessness is not in itself dangerous. I practice PLB (pursed lip breathing) as it helps control my anxiety at being SOB. There are also relaxation, positioning and breathing exercises that you can ask a physio to teach you.

  • I have learned by experience to plan ahead. An important part of controlling my breathlessness is to prioritize and try not to do too much at once or in any one day. Although often frustrating this allows me to conserve  energy for the things that are important to me: this helps my overall confidence.
  • I know I also suffer from air hunger, particularly in the kind of humid muggy weather we have been having. And a lot of my friends have been saying the same.  I do things like cool my face with cold water. Sometimes this reduces the feeling of breathlessness. Plus, I am a mad window and door opener: any way I can create a through draught is beneficial to my breathing.

  • I constantly pace myself. I allow plenty of time and take breaks when I need them. Yes, being active increases my feeling of breathlessness but this is normal for every fit and healthy person, so why worry so much?!
  • With any activity that I find difficult, and definitely going upstairs, it is important that I get control of my breathing before I start. Tasks I find really hard when I’m SOB are things involving carrying or bending-I’ve learned either not to do it, or to ask for help, especially at school!

  • Oxygen helps me a great deal, but obviously you need to have a medical reason to be prescribed it, and not all people will respond to ‘upping the oxygen’ just because they are breathless. Because I find oxygen helpful I am prescribed to use it at anytime such as just before I walk upstairs, or when or  before walking our doglet up the road. To use it now and again when I have become very SOB is also beneficial.
  • And finally, Diazepam. Nobody likes to admit they are taking valium! But on top of all the usual myriad of anti asthma and anti breathlessness meds, I have found 2mg of Diazepam here and there really helps me. I suppose, because it is usually used to treat anxiety it can also help with the breathlessness because being SOB has so much associated anxiety and panic. Mine is usually prescribed at night as it makes me wonderfully sleepy. If you think it may help you it is worth asking your Dr about it. I have been pleasantly relieved and have enabled a decent amount of sleep on a number of occasions during this horrid weather spell, recently.

….What I have written above is just an idea of my ways of dealing with long term SOB.  If your breathing is getting worse or you are experiencing breathlessness as a new feeling, please, please seek medical advice from your GP…..

Aching ‘like billio’!

July 16, 2011

…..Yep, one of those nonsensical expressions…..

But it’s true!

By the time I crawled into bed last night, I could do only that, ie just crawl. A combination of standing too long at school on and off,a multitude of bending down doing pseudo squats picking up mosaic tiles from the classroom floor ((as some loopy Yr 10 left them on the window cill and the wind blew them everywhere)), and of course, yesterday I did THE BIG 1st 10mg Pred taper.

And the result is-I could happily have chopped my legs off last night, the pain was so bad!

I gave in at 7am this morning and took 3 paracetamol and already feel a lot better for it.

So crazy, as it’s my lungs that should be whining at me for dropping a chunk of Pred like that, but my darn muscles screamed instead. I always find the initial Flu like side effects of a biggie Pred taper absolutely ghastly, which is why I’d planned it for my weekend/non working days.

The weather has changed to heavy driving rain and howling gales now (a British summer!) which, knowing my luck will only accentuate the agony I’ve had since yesterday evening. Rheumatic pains suck, and at mid 40s I’m getting them now too!

Just as long as my lungs stay some degree of stable, and don’t do a super splat with the weather change, I’ll live with the reduction symptoms as I want to get back to baseline quickly again. Will hopefully knock another 5mg off tomorrow and do the next drop on Friday. I am crossing everything that 25mg this week will be enough to get me through the last week of term.

…..And so the cycle continues!…..

12 of 12: July 2011

July 13, 2011

…. So here follows my series of 12 photographs taken throughout today, the 12th of July, 2011….

The last month has been packed full! School’s been majorly busy with all the exams, which, I am told, went well! We had many BBQs taking advantage of the lovely sunny summer evenings. We had a visit from Asthmagirl and her husband which was great fun, and we celebrated 4th July with a Family BBQ. Anna-Bell would live in the garden if she could-she really is in her element now. She turned 11 months and is really quite a character!

It’s nice that with this being a Tuesday J and I are both off. Although the air is really bad today, heavy cloud, moderate pollution and so humid, so I’m not feeling very well and am extremely SOB.
But, nonetheless, this is my day so enjoy my photos!
1  ) 5am. I crept downstairs to take my meds. It was really cloudy and the sun was just coming up over the fence.
2  ) 6.15am. Moments after I took this, AB revealed that she was wide awake, although here she is doing a great impression of still being asleep!
3  ) 6.20am. Morning Garden shot. Most of the roses have had their first bloom now but other plants are coming into their summer element so the garden is changing all the time.
((I then made my breakfast and gave AB hers, and we went back to bed with  J as I was really tired after last night at Black Pepper, celebrating Kizzie’s Birthday!))
4  ) 11.30am. I’d forgotten to run the irrigation so watered the front hanging basket on the way to Waitrose.
5  )….and my lovely blue Hydrangea….
6  ) 12.30pm. I came back, and played with AB and gave her a snack of juicy fresh iceberg lettuce, which she loves!
7  ) Then I made a little light lunch for me-Waitrose now do GF bread sandwiches.
8   ) 1.28pm After lunch AB and I went in the garden and inspected the runner beans!
9  ) And we saw how pretty the day lilies are too!
10  ) Around 3pm. J and I popped over Uxbridge, and then came home and picked up AB and took her to play with Poppy. They both had new raw hide chews and had fun in the garden with them.
11  ) 6.15pm Bath time. So relaxing, I’ve pulled my back so I needed a soak. I put some of that muscle relaxant bubble bath in it tonight.
12  ) 7.40pm Dinner time. Chicken with BBQ sauce, vegetable rice and cauliflower cheese. Yummy!

Hope you’ve enjoyed my diary day, 12 pictures taken on the 12th of the month.

Night, night from us here, and see you next month!

….If you’d like to read other bloggers’ 12 of 12′s, go to Chad Darnell’s Blog.

National Transplant Week, 2011: UK.

July 6, 2011

…..This is National Transplant Week, here in the UK…..

If you have not signed the Organ Donor Register yet, then please do.

You can link to it here. And if you are outside of the UK, please make a point of signing your respective country’s register too.

I like their poster campaign this year: Become a Superhero!

Even if you have spurny lungs, and let’s face it, I do!, there are still plenty of other organs that could be used to save someone’s life. Skin, eyes, kidneys, liver-yes, even after all the drugs these can be flushed through-maybe my tolerance of the high levels of steroids could benefit somebody else since Pred is an anti rejection med used after transplant!

Nobody likes to talk about death. But it’s going to happen to us all. And if we can help somebody after ours, what better use for a life cut short than to save another. I would want that which is why I signed several years ago.

If I haven’t worded things too well, I apologise. I’m proof that this is all much too taboo here.

I have known several friends have lung transplants-mostly for CF, and they have all but one had a vastly improved quality of life and are doing well. I hear and feel their gratitude for the lungs they were donated. I value the fact they are still alive and walking among us.

…..So go on, become a Superhero and please sign, it only takes a few moments…..

Thank you!

The 4th Of July!

July 4, 2011

…..Happy Independence Day, USA….

Wishing all my American Friends a great Holiday and hope that your BBQs are smoking away but not affecting your lungs! and you all have some great merriment and Family fun this vacation. We are having our BBQ this afternoon, and have our respective Family coming. Can’t wait!

We’ll be having some sparklers (hand held fireworks!) later tonight too!


….And I baked a flag cake again, so check out my Project365  for a photo of it later!…..