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….

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…..

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!))

World Asthma Day 2011

May 3, 2011

….Tuesday May 3rd 2011 is WORLD ASTHMA DAY….

So what is World Asthma Day?

World Asthma Day is an annual event organized by the Global Initiative for Asthma (GINA) to improve asthma awareness and care around the world.
This year’s theme, “You Can Control Your Asthma” will focus on how asthma control can reduce visits to the hospital.

My Thoughts on this Year’s theme “You Can Control Your Asthma”

  • You are in charge of yourself and your medications. Never leave anything to chance.
  • Do not expect too much. Aim for the best possible control, ie the least possible symptoms.
  • Never be hit and miss about your medication. Take your controller inhaler/medication even when you are apparently well.
  • See your Asthma Nurse/Doctor if your asthma control is worsening.
  • Always be upbeat about your lungs and above all, truthful, never say you’re ok when actually you’re struggling.
  • Avoid your triggers if you possibly can.
  • Find what plan of campaign works for you and action it to achieve your best possible control.
Wow, how positive is this word  ‘Control‘. How wonderful that this years’s WAD them has a positive outlook.
Although, for some Doctors, controlled asthma means never using a rescue inhaler. For other medics controlled asthma means waking only 3 nights in a week. I think the Global Initiative probably ought to come up with a more clear cut guideline, something a bit more cut and dry like the British Guideline on the Management of Asthma.
Ok, so my story is a little different. My asthma is not typical of the little blue inhaler brigade and does not follow a text book definition. I have severe, difficult to control fixed asthma, as diagnosed by the Royal Brompton Hospital.
Firstly, for me, Control means I’m up and about and pottering around the house and although short of breath, I can walk up the stairs, maybe pausing a couple of times, but I can’t talk to you whilst doing it!
Secondly, I am very often Out of control and am most probably sitting bolt upright in bed unable to function even around the house.
Thirdly, Losing any semblance of Control is something I aim day by day to avoid happening, as this means I’m in hospital on IVs and BiPap.
The word control in asthma is therefore a very personal thing.

At the time of writing this, Tuesday May 3rd, 2011, I have semi stable asthma but an uncontrolled chest infection. How complicated is that?!
Yes, I am currently on maximum asthma medications, and have bumped up to 40mg oral prednisolone and am now entering a 3rd week on anti biotics. For some asthmatics this might be unheard of. Pred is something of a nightmare threat that luckily for them they’ve only had to take once or twice in their whole lives. But steroids keep me controlled and alive! So my  “You can control your asthma” bar is just set a whole lot higher-with the help of bucket loads of drugs and inhalation therapies, oxygen and nebulizers, I am upright and pottering in my house so I am probably, almost controlled.
Makes a bit of a mockery of the Doctors who say that control is never using a blue inhaler. Oh dear.
Have a great WAD folks-try and wear something grey to show your support. Terribly gloomy colour, I know. Asthma doesn’t have to be all doom and gloom. Asthmatics should be able to live life to the full with the help of good technique, good action plans and good inhaled medications.
….How about you use the comments below to tell me how controlled you think your asthma is….

More Moderately Bad Air Today!

April 18, 2011

….In spite of it being warm, London is under a blanket of thick cloud, making it airless, heavy, polluted and muggy….

My AirText App has sent me a moderate air pollution warning text every day for about the last week. See all the yellow-and Ruislip right in the middle of the picture. How on earth 35,000 people ran the marathon in this air yesterday, I just don’t know!

No wonder I’m feeling rather SOB. About 3 weeks ago I had a couple of red texts meaning high pollution. Those days were just awful. I have no reason to go outside today, apart from to water the dog and that will be my limit. Since all the hype about global warming and climate change, we are really proving how the SE of the country is now living under a rain shadow. Where are the dense clouds that bring rain as they aren’t here atm?!

….Please will it rain-my grass needs it too….

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…..

Six Red Monsters!

September 25, 2010

….That’s 30mg of Prednisolone to those of you who understand lung  jargon!….

And six 5mg tablets is a good thing as it means-like my side bar has said since yesterday, I am starting to reduce. Rather a large reduction for  me, as I usually go down one 5mg tablet at a time, but I seem to have stuck at this level of yellow zone plateau for long enough to warrant a quicker than usual reduction. My crazy philosophy is that the quicker I get back to my baseline dose, the less chance of my lungs waking up and noticing. Absolutely barmy by any Doctor’s standards but I do try to ‘mind over matter this drug’. So what if I’m still Air Trapping a heck of a lot, this asthma purgatory isn’t going to go away but sitting on a 40mg daily dose of the red monster pills. I’m not burying my head in the sand here either-I’ve been in this situation many times before and I’ve spoken to my Docs this week, and have been given the OK to reduce if I feel I want to try to, plus I can stay on increased oxygen to help with the inevitable SOB I’m no doubt going to be feeling.

So whatever! 24 hours in-I’m still scoring 70% PF and as I’m such a chronic yellow zoner, that’s still very acceptable!

But the cramps and aches and pains have already got me. My knees, calves and fingers feel like I’ve been out in the snow too long, and I’ve got that whiff of a fluey achey feeling this morning. Not a cold coming, but just how a Pred reduction makes me feel. Gatorade and Kettle chips to the rescue!

If I get through the day with some degree of stability in the lung department I’ll be mighty happy-the plan is to try a swim this afternoon, because usually 48 hrs in I have to start toughing things out a bit more so tomorrow might not be as possible.

The first 10 mg drop is always hard-something of a shock to the scaffolding system. Pred is like lung scaffolding for me, and I know I’ll feel weak and wobbly when it comes to trying to breathe with less of it-but hey! my mind is strong and I’m tougher than you think.

So the current plan is to stick at 30mg this week and reduce another 10mg next weekend.

Crunch time (if I’m lucky and don’t pick up anything in the lurgy department), will come at the 20-15-10mg stage. I’d like to think that even though it’s definitely Autumn and Winter is coming, I can still get down to my baseline dose of 10mg. Although this time last year I was stuck at 20mg for a long time. If that happens again, I wont beat myself up-I’ve achieved 10mg for most of the Spring and Summer of this year. The whole idea is that if my bones are going to stand half a chance of not deteriorating any more, I need to be at my lowest possible dose for my lungs to cope. I have no Adrenal issues, I am relieved to say, so there is always the possibility of being off the oral stuff totally. I’m game for it.

We all hate the Pred. It saves lives but it messes you up in so many other ways. So whilst I go through the mental and physical craziness on it…

….I guess I’ll just keep polishing my horns!….