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….

It’s The ‘Pepper Nose Feverish Coldy’ Time!

December 14, 2011

…..I have a cold!…..

But not that you’d really notice, I just feel utterly crap as opposed to those who sound coldly crap or look it with their noses running down their face. Mine never does that. It’s the low grade fever and headache and my itching peppery nose that makes me feel so  bleugh!

Having survived almost the whole term dodging germs of all sizes, we went to Mark and Kate’s wedding on Saturday and it seems I’ve brought more than memories away with me. Somebody I hugged or air kissed has breathed the lurgy of the moment over my persona and I’m now riddled with a pepper nose (feel I want to sneeze all the time), ear ache and a fever.

Oh well, nothing I can do really except take the Lemsip to school with me and keep warm-fat chance in our ‘practically below the legal limit music room that I’m teaching in first thing!’-and drink loads to wash it out of me. Doesn’t feel like this is anything more than a head cold, so I shouldn’t be fussing, but it’s already got me in a quandary over my Pred reduction. I’ve been struggling on 30mg-and already so SOB that things are really tough and very uncomfortable-and to think, the plan was I was actually going to go down to 25mg on Friday-big problem there, me thinks that may have to wait. I’m racked with aches and pains as it is and feeling yeuch from the less Pred, how simply dare a cold now show it’s ugliness. As if I haven’t got a big enough case of the reduction blues already.

…..Oh well, off to school to mingle my germs with those of approximately twelve hundred others!…..

Post Script: The second this hints at going south I’m bringing in the SAS!


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!…..

Results and Verdicts

May 17, 2011

…..Had my return session at RBH yesterday and came away feeling quite happy…..

Luckily, there hasn’t been too much change. Now remember, I’m talking bones and lungs here! I hadn’t had a DEXA for a good 2+years, and I must be doing something right as my bones have only decreased by about another 1%. This is a massive phew! for me. I know that Fosamax is very slow to work, or rather that bone density is very slow to build, but maybe after being on the drug for nearly 6 years things are now working positively. And the same for the high doses of Calcium plus Viatmin D that I take daily. Not that my asthma directly affects the bones, we all know it’s the dreaded Pred because of my asthma  that has caused me the osteo whatever side affects.

So that’s one positive result. The other was that I blew a really good (for me) set of lung function tests and therefore we are not going to move my base line and are still going to us my personal best PF as being 360. Last Tuesday I’d blown around 300 off meds for 4 hours and repeated this blow yesterday with my physio who also did a reversibility with me and I increased it to 330 which is about the best blow I have done in yonks! Plus my physio also gave me some good tips for dealing with my SOB in the evenings. Something I really suffer from.

My Consultant said my lungs were the clearest he’d heard them (!) and this being a few short weeks after I’d had another nasty bout of asthma plus infection, mid April. He attributes this to the hypertonic saline and autogenic drainage routine that I am now so very much in the swing of. The extra 20 minutes of lung clearing time twice a day is seemingly being positive.  I got over  that infection in 3 weeks rather than the usual 6. Plus we hit it with the right anti biotic, knowing I culture Staph Aureus.

Whilst we cannot crack the asthma: it’s there, it’s a part of me: maybe we can help the constant gunk and deep seated infection issues. I am certainly far less junky gunky at the moment though. Plus I am washing my nose out a whole lot each day-as routine. Another 10 minutes of dejunking and degunking. Wonder where has my free time gone these days?

Perhaps there is another reason as to why I do get these repeated infections-he isn’t sure, other than the bit of bronchiectasis I have, he thinks maybe my low white cell count (0.9) has something to do with it. Maybe my immune system is being knocked out by the pred? or maybe there is something else? I had a bunch of bloods done yesterday testing for immunoglobulins. I am sure everything will be fine though and it’s just because I’m a teacher 3 days a week and work in a germ factory that I get sick, often!

There is stuff to work at, besides the phyio though. I have to get my Pred back down to my baseline of 10mg and I’m currently reducing slowly and am at 25mg. This is only because it is allergy season and I’m quite twitchy, plus I ache like crazy and feel zapped of all energy-all pred reduction symptoms as far as is normal for me.

I also need to do add a few prophylactic med doses in that I haven’t necessarily always been taking. That idea of “keep what you have got lung wise open as best you can and you wont get infected?!” LOL, Andy! So one more lunchtime Atrovent neb has been added and a midday dose of mucodyne for always and not just when I’m junky/infected. Great!

And they want to see me with my next infection to run bloods and repeat some of the LF tests that will show up how bad I am during an asthma/infection exacerbation.

…..But if I can stay well, my next routine clinic isn’t now until August. That’s good news too!…..


April 15, 2011

….Or maybe that should be “Natter with a Nutritionist!”….

So it was 9:30 AM on my birthday morning and I was just thinking about getting ready before my coffee party and my Parents arriving, and the phone rang. Turned out it was one of the Dieticians from the Royal Brompton Hospital phoning me for a ‘then and there’ consultation. She started by asking me my date of birth so I said “today” and that sort of made her laugh she asked if I could bare to have a phone consultation on my birthday and I said “yes”! She understood that is virtually impossible for me to get to a clinic appointment at the moment. They only hold Dietetics clinics once a month on a Thursday morning and that’s no good because of course I am always working.

So she asked me lots of questions about what I eat and my typical breakfast, lunch, dinner, snacks, drinks etc, and she tried to calculate quickly how much I eating calorie-wise, fats-wise and with my height and weight what might bmi is.  Apparently it is around 16 which is really much too low. She then suggested that I need about an extra thousand calories a day on top of my normal food intake, but I just don’t have the appetite or stomach space to eat that much more and therefore I need to replace this with supplemental feeding. This is what I have been doing for the last 5 to 6 years although for the last three months I have been off my feeds because I have been trying to reduce my cholesterol and concentrating on eating low-fat

Whilst this has been beneficial in reducing my cholesterol from 6.99 to 5.14, it has also reduced by weight by about 5 kg. We went through all the things that I should be eating ie more of the good fats like monounsaturated fats, olive oil, rapeseed oil almonds and walnuts. And the things that I used to eat on a high fat diet before I realised my cholesterol was bad, such as butter, whole milk and the saturated fats. I do like and eat a lot of oily fish fresh tuna, salmon, and I’m now going to try and have sardines and I’ve been told to have as much honey, jam and sugar as I can because that is good calories but no fat.

And at last I can have my supplements re-added to my prescription and therefore my diet. I used to have Scandishakes and Ensure Plus milkshakes but they have a lot of fat in them so I’m now going to have Ensure Plus Juce-lemon and lime flavour as that is my favourite.

They are pure carb calories and sugar calories but no fat and I am going to be having two a day of those between meals. We are also going to take away my Pro Cal shot as that is all fat, and replace it with  three shots of Polycal Liquid which will give me 270kcal per 100mls.  

If I have three shots of that a day it will give me an extra 300 calories and the two  Ensure Plus Juces will give me another 660 cal so that is very nearly the extra 1000 calories that I need. 

So why do I need all these extra calories unlike everybody else when I’m on long term Pred? And, as you know, I’m the opposite of overweight. Plus I’m not exactly over active either- in fact I’m pretty sedentry at home in my own environment and I also ride around on Scootie at school as I cannot walk large distances because I get so short of breath.

So why am I burning all these calories?

Well, My body seems to react in the opposite way when I’m on Pred. The drug seems to cause me to have a diminished appetite.  and I actually prefer to eat things like salad to biscuits and cakes anyway. However I have a bad cough I have coughed  constantly for about the last six or seven years and because I cough so much and my cough is always a productive one, I am burning up a great deal of energy and calories just coughing and producing sputum. 

Have you ever wondered why severe COPDers are often very thin?

Well that’s me. That’s my lungs. That’s where I do fit the mould. 

The steroids have also caused a degree of myopathy-muscle weakness and wasting, so my body has changed for the thinner not the fatter. 

I wish it would all go away but of course it’s not going to. I’ve enjoyed eating more normally for 3 months, bit I’m looking pretty darn scrawny now. 

And my dietician thinks I’m probably one of the people with a predisposition to high cholesterol unless I can stick to eating the right things. Hence the fact that I can’t just go back on my High Fat butter dairy ice cream regime.

We will test my cholesterol again in another 3 months after starting the new supplements. Hopefully I will gain and maintain a little weight. That in turn will improve my Lung Function and immunity to germs. I seem to have gone down with every bug going recently because I’ve just got no reserve. 

….But first my Dietician has to write to my GP telling her all this, and that she’ll need to prescribe my supplements. I hope this happens without there being a spanner in the works!!….

A Non Specific Virus Strikes Me (AGAIN!)

March 31, 2011

….and specifically of the nausea, vomiting, stomach like water and head exploding type….

Oh, and did I mention the fever?

So our trip to Charing Cross Hospital on Monday for Julian’s biggie Endocrinology consultation had me picking up more than I bargained for. I guess two tube trains, two buses and 4 hours of trudging from multiple rooms to pharmacies to blood tests around a huge hospital is way too much to ask of my immune system which is already semi knocked out by the steroids.

Plus I have an Achilles stomach.

And by that, I mean my stomach does not function in the way an ordinary person’s does-I get very stomach sick very easily. Maybe it’s the whole gluten intolerance thing or the whole I’m a migraine sufferer thing, or just that my stomach is weaker than normal and if there’s a bug in the air, I’m going to get it.

….and here’s a picture especially for ‘Tasha!

I actually haven’t had full on definite Norovirus since December 2008, and when I picked that up it was following a trip to RBH-so ok, tubes, hospitals and the general public throwing germs at me. But I have had countless scouring out stomach upsets/bugs/ or really, Non Specific Viruses. And the last one was only 2 weeks ago.

And I’ve currently got another one.

So this is now my 2nd day very much in bed armed with the alcohol hand gel, antibacterial wet wipes and bleach sprays in the bathroom I am using. Julian never gets my bugs, it’s just a ‘me’ thing-but I am a germophobe and a cleanaholic at the best of times, which makes it even more unfair that I’ve picked up another bug. Luckily the doglet can’t catch human germs, (or so the Vet said!)

And I feel just rotten. It’s the headache that floors me. The nausea can be controlled once I’ve stopped physically projectile chucking up. The stomach can have doses of ‘revolting but pink’ pepto bismol thrown at it, and I just have to wait for my body to fight the lurgy and regain some semblance of order in my digestive system and recover from the extreme weakness and horrid, horrid malaise.

If it wasn’t for my iPhone I would lose touch with the world. So Ok, today I am semi lying on the spare bed with my compter, but yesterday I could barely lift my head off the pillow, and hardly answered or sent texts/tweets as I was sleeping so much and my eyes just hurt. Sleep heals. I am very short of sleep as my lungs have been twitching alot at night recently.

And the most worrying thing about having yet another sick bug is that I absolutely have to keep my meds down, especially the steroids, and jokingly, my antisickness tablets-which even I can puke up, so I challenge any chemo patient taking metaclopramide to stay nausea free on them!

Interestingly, my last bloods at RBH in February showed that my white cell count is low, at 0.9, and they wanted my GP to keep an eye on things. I guess this is probably another steroid side effect, and is surely the reason I pick up so many of these bugs.

….Plus the fact that public transport, hospitals and schools are all whacking great germ factories and on Monday and Tuesday I’d ticked off visiting the whole list. So really, did I have a chance?!….