Surviving With SOB

December 19, 2011

…..So many people remark they are SOB, but I think we all deal with it and suffer from it differently…..

Whilst there are varying degrees of any symptom, there are also some pretty uniform ways of self helping your SOB. I do not profess that any of these truly work for the most severe of symptoms but on a day to day basis this is what I generally try to do to cope with mine. If like me you have a COPD element to your asthma then these steps will make sense and you may have already been taught them and/or PLB techniques.

  • I get myself in a comfortable position with the medicines I need to hand, and take them, an extra dose or two is not an overdose in this example!
  • I try to calm myself down and prevent panic. I reassure anyone I’m with so that they don’t panic and set me off. I always let them call for help if I feel I’m not getting my breathing under control. ((You can always cancel the call if you don’t need assistance.))
  • I find I like to go outside, or anywhere where the air quality is different-by a window for instance. I know that even if I’m gasping for air, there is still some oxygen going into my lungs. I tell myself I will be okay.
  • I try to relax shoulder and neck muscles. ((When we panic our muscles tighten and make it more difficult for the diaphragm to do its job of drawing air into our lungs.))
  •  I also know that I can’t draw air into my lungs if I already have stale air in there. So I stop trying to breathe for a moment-I actually practise breath holding for as many seconds as I can manage to slow myself down, it helps to relax and calm me.
  • I also slowly squeeze all the air out, using my stomach muscles as well. I try and breathe out for about a count of 8 to really empty my lungs before  I inhale as deep and as slow as I can manage. If it doesn’t feel like the air is going all the way in, I don’t worry about it – I know to just breathe out slowly, and breathe in slowly again.
  • Hopefully, after a few regulated breaths, I should start to feel things  are calming down and my lungs are “opening up” “better” and the air  is getting to where it’s needed. Remember this is how I deal with SOB episodes and not asthma attacks as such-I’m not talking about coping with the tightness, just the horrid air feeling of “air hunger”.
But please be wise and seek help and advice from your Doctor. I’m not a Doctor these are only my first hand ideas of how I get through the tough SOB times.
…..Peace of mind is worth a lot, and if your shortness of breath is caused by illness, early detection is your best bet for dealing with any problems that arise, oh, and maybe a trip to the ER for BiPap….

Wednesday Weevils Wobble!

May 26, 2011

…..I wobbled after school  last night…..

Couldn’t get out of that after school Faculty meeting yesterday afternoon quick enough-was pelting down the corridors of doom on the top floor on full speed-even poor Scootie was puffing!

I got home and thought I was going to faint. That weird blood sugar low feeling when you come over all shaky and sweaty and very peculiar feeling. Checked my O2 SATS: 83%. That explained it. I’m also now almost at baseline Pred so this is my wobbly crucial time too. Texted Julian-mini riot act was read to me-put your O2 on now and sit still. So that I did. An initial 10 mins of 5L and then down to my rescue me 3L level.

No walking AB slowly round the block so I let her run amok chasing pigeons in the garden whilst I sat on the bench with E.T. in the shade and breathed in deeply. And had a cup of tea and some marmite rice cakes to pick me up off the floor, energy wise.

I used to get so air trappy on Wednesdays as it is such a hard teaching day for me and I back up so much stale CO2 talking like that-add to that a rehearsal p5 and a meeting and I was literally on my knees.

I couldn’t even detect the pollen or the ash cloud-double weirdness-it was all just my dysfunction not that of the air outside for once.

Going to have to check my enthusiastic pace today-I’ve got my band and some musicians playing for a Eucharist first lesson and have to keep going for another after school session-detention duty.

 …..I really don’t want to come home in that fit for nothing state again today!….

((Half term in 2 days and counting!))

An afternoon of Tests!

May 11, 2011

…..So Tuesday afternoon was spent up at the Royal Brompton Hospital having Tests….

Firstly: I had to have my DEXA scan redone as it is 2.5 years since the last one. The amount of Prednisolone I am on permanently and the amount my usage increases during exacerbations deems it necessary to have these scans. My last one showed 29% loss in my lumbar spine and 15% in my hips. I am on Calcium, D3 and Fossamax long term too so I hope this loss has been stabilised.

Funnily enough, it was a job to find comfortable loose fitting summer clothing that had absolutely not metal in it!

Secondly: I had to do some up to date full Lung Function tests. We are aiming to find where my baseline is these days. I had been instructed no Seretide 500 (Advair) this morning and wasn’t allowed a neb for 4 hrs beforehand. Originally we were going to get me in and do it off meds but it was deemed too risky in the light of recent lung infections and asthma episodes. I’d been feeling pretty air trappy all night and was quite uncomfortable but I absolutely gave it my best blows as I am eager to find what is happening to my lungs too. I will get the results next Monday in clinic. It was torture. I got so tired and the glass box was totally stuffy and airless. They finished with regular Spiro and I’m not joking, my technique was crap. They tried everything to get me to do a decent huff but I was just totally malco-ordinated by this stage-an hour of tests left me shattered.

Here I am in the room doing the tests, and in that horrid glass box!

Gosh. So after the scanning, blowing and travelling I am pretty whacked out. And I’ve got school now. And I’m already not feeling that great.

…..I await all results, eagerly-I actually have the envelopes but they are sealed-d’oh!…..

Thank Heavens for Technique!

October 6, 2010

….So yes, it seems like I’ve really been suffering  forever with….

  • The eternal asthma purgatory that is the bottom end of the Yellow Zone.
  • The constant feeling of air starvation with suffocation thrown in.
  • The sleepless nights.
  • The inability to get comfortable with anything.
  • The incessant tiredness that ensues when the air trapping saps every atom of your strength.
  • The boredom of it all, especially not being up to having my swim and some gentle form of exercise.

And then I remember my technique.

I used to be a brilliant oboe player. I say that with complete hand on heart because it’s true. A few months back, my student teacher whacked on a CD and played some of it to me. She half tricked me and asked what I thought. I remember saying the pianist was dire, the composition was mediocre but the oboe player was gorgeous. She then told me the piece was one of her GCSE Music compositions, the pianist was an ex colleague and the oboist….was me! I was so chuffed. Then it all made me cry. I used to be able to play like that now I can’t even blow the thing. Geez, I even cried at my parents when I told them about it.

I wrote this post last February about my oboe playing.

So where is the technique? Answer: in my diaphragm of course. Although I’m sort of half feeling like I’ve just come out of the ring with Mike Tyson, I’ve got a rock solid diaphragm and that’s what I have to thank for getting me out of so many scrapes, breathing wise.

As an ex-oboist, I still practise the technique surrounding the breathing pattern necessary to play the thing well.

Not much air leaves your lungs therefore a whole lot stays in your lungs. This leads to a build up of CO2 which, in poor technique can cause hyperventilation, giddyness and fainting. I can safely say I never once fainted, think I almost did once in a Mahler symphony but I remember it being so very hot in the auditorium! (Seems I was destined for a life of air trapping from the outset of my oboe lessons, doesn’t it!)

This back up of retained air is easily sorted out by learning how to breathe properly. Whereas most wind players get away with breathing IN at the end of a phrase, the oboist has to breath the CO2 OUT then take fresh new air IN. It takes a bit of getting used to but eventually becomes second nature. I was one of those lucky oboists who also learned to Circular Breathe.

Oboe playing is not “dangerous” provided you are well taught and you learn to breathe properly. The oboe is recognised as an excellent instrument for those with asthma (if well taught) because of the breath control technique it requires.

As a player, I could keep going for ages and ages on a single ‘OUT’ breath. I could play the whole of the 1st phrase of the Strauss concerto on the longest single out breath ever-it used to amaze people. And, yes, I had quite severe asthma in my college days. One of the reasons I wanted to learn with my Professor was because I knew he’d understand being a fellow severe asthmatic.

It’s this sole ability to really exhale for a long time that helps me when I am so backed up with air like now, and really suffering for it like I said at the top of this post. When I practise my P.E.P. therapy, I inhale for 4 counts and exhale for as many as 12 counts if I can make it-all the time trying to empty, stretch and splint those clamped off airways open. If I were to really try, and in safe conditions, I would probably only completely exhale my lungs about 4 or 5 times in the space of a minute if I could relax enough. Trouble is, I gasp the air in so much it can be self panicking. Therefore I’ve always got too much CO2 hanging around.

I also practise the Pursed lipped Breathing technique. (I’ll write another post on PLB another time)

So really, ahead of dragging myself, almost in the dark now, to school, I think I’ll close by saying, yes the humungous doses of Steroids help, the Bipap helps, the ABGs help by telling us what is transpiring, the IVs load the drugs in, the intensive monitoring helps, but what really counts for everything in any post recovery phase is

….a good breathing technique…..

In need of up!

September 30, 2010

….This is my P.E.P. device….

I’ve been using a Pari P.E.P. device as part of my lung treatment for several years now. I’m currently not enjoying this pred taper and am coughing like a trouper due to the dampness now it is almost October plus I’m being affected by whatever leaf mould is flying around and it’s been very wet recently.

I generally use it attached to a neb, as shown, but it can be used with a separate non venting mouthpiece as a breathing device to help with air trapping. But if I’m being honest here, I’ve lost the mouthpiece, so that’s why it has to be attached to my neb these days! Anyway, the principle of the device is this: When you exhale into the device it provides you with Positive Expiratory Pressure (hence P.E.P.) This in itself can help to splint open the airways, (much in the same way that BiPap therapy does this when in hospital and severely unwell). It can also help disperse and shift the mucus and secretions that many of us with chronic lung disease have. I’ve got a wet lung syndrome and always, always have something to cough. This does help me.

I’ve found that by using my P.E.P.device when nebbing bronchodilators, I have a better chance of opening up my airways, maintaining my best lung volumes and increasing my ability to cough and exhale properly-the biggie problem at the moment- as I am really air-trappy again today. So it looks like I’m going to be back on the P.E.P. now instead of my usual come what may approach-or 10-20 breaths on the thing when I can get around it to (I’m a lazy P.E.P.per, I admit!)

If I’m very coughy, gunky, I switch to using a Flutter device-but that’ll be another post!

So this is why it is so hard to exhale when using one of these things:

There is a sequence of 8 little holes on the top of the device -(my Drs have determined which one to use), it has to be aligned with the big hole on the main body of the device. I use the second to largest! I would love to think I can train and strengthen the lung percentage I have to exhale through the smaller holes-it almost gives me a headache to blow against this type of pressure as it is!

I spoke to my physio today and am now supposed to be using the P.E.P. four times a day, to help me get through my Pred taper air trapping symptoms and this level of SOB that I’ve got going on. I’ve been truly uncomfortable this week. This morning I started coughing-the sort of cough where there is no air coughing out and you still feel there’s a bunch of air stuck. Really rotten stuff for me, as  I was teaching a Year 7 rhythm session and I really needed to cough or vomit or something to clear that feeling of being totally stuffed with concrete lungs.

….So yep, I need up and I hope this works, it’s a miserable feeling….

Affected by Altitude!

August 12, 2010

….We had the most awesome day out yesterday, driving up to Idyllwild, 5345 ft above the desert floor, in the San Jacinto Mountain range….

But I found the altitude unbelievably hard! I suppose I should say I wasn’t surprised. I could feel my heart thumping and my lungs struggling from even below about 3000 feet and that was just from sitting in the car whilst Julian drove the hairy switch back mountain roads. Such was my usual enthusiasm for visiting the beuatiful, quaint town, that I leapt out of the car at 5345 feet when we parked and ‘bam’ every altitude effect suddenly affected me. I knew I’d be needing extra oxygen but ‘bam’ the air seemed so thin I didn’t even know how to get it down my tubes! It wasn’t that my asthma was kicking off, I simply couldn’t seem to get any breath to do anything. It felt like to haul it into me was a major effort, like there was a great weight sitting full on the centre of my chest, and I soon developed a stitch and pains in my lungs. I knew I was beginning to be affected by Air-Trapping too, another all to common and extremely uncomfortable symptom. In fact, the only symptom that didn’t whack me full on, luckily though, was that of a banging head. My head remained as clean and clear as the mountain air even if my brain was cloudy. But I did feel a little dizzy, a little light headed, a bit wobbly, very slow, and extremely short of breath. Could have been the overpowering scent of the pine trees which was a bit like being in a vacuum of Olbas Oil-which actually we both loved and commented on all day long……if only we could bottle that scent and take it home to stinky London with us!

I had a couple of extra nebs, which really didn’t help, I needed more oxygen than the 3L my POC runs on maximum at. It’s not that my lungs were tight, they simply couldn’t handle the low O2 air % even with my supplemental supply. This will be an interesting conversation with my hospital team when we return from vacation.

Apart from my spurny lungs, the day was awesome. We found the town too touristy for us so we headed straight for the Ranger Station who told us to go visit  the Nature reserve as it would be manageable for me-this is after all, prime hiking country-so no way!-and there I could plant my behind on every bench, and J could shoot practically every pine tree.

And to prove I was still standing….

(ps: The colours are absolutely real. The blue of the sky here was like none other, except perhaps high up in the Rockies in summer time)

And finally, a shot of the view from the summit which I was dragged up, huffing and puffing, and really feeling like I was going to expire!

If you have been following my 365 Blog, there are 4 YouTube videos linked to yesterday’s post, Day 72, August 11th. You can view them here: Idyllwild 1,  2, 3,  and  4.

It really was the most fantastic day!


….I strongly advise anybody with lungs like mine to take it easy and maybe to  consult medical advice before taking a day trip even, up to anywhere of altitude. It is a strange thing the way it affects some of us-J of course seemed totally unaffected-lucky guy!….

My School Year in Stats!

July 24, 2010

….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!….