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

…..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!

 

Aching ‘like billio’!

…..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!…..

We’ve all got Hay Fever!

…..All 3 of us are sneezing, even little Anna-Bell!…..

It seems the dreaded summer allergy season has hit Tow Towers all at the same time. Julian and I have got the same symptoms and Anna-Bell keeps sneezing like you wouldn’t believe when she goes in the garden to play!

The pressure is high but we have had no rain so the pollutants and pollen have become down right nasty here. Julian and I have both got these non stop muzzy heads, and sinus pressure and aching ears, plus of course, the sneeziness and wheeziness in my case and itchiness in all our eyes, A-B’s included.

I guess it’s a case of keep on doing the old adages, close those open windows at dusk when it all comes down, wash those net curtains weekly, shower off after being outside, don’t wear outdoor clothes laying down on the bed for a nap (very guilty), and stay out of the outdoors at the worst pollen forecast times.

We are both on Nasonex and A-B is having her eyes bathed with cold water when they get really watery. It doesn’t seem to bother her, but how would she tell me if she also had The Headache?!

It’s been such a glorious summer so far, and neither of us suffer that badly although I have noticed my SATS have dropped and I am currently really feeling much more huffy puffy than I was, so my chest is a bit off it’s recent good norm. I’m almost down to baseline Pred but don’t want to do that last 5mg drop yet as every time I plan it I have a chesty attack and get reminded I probably need more. It’s just a number so I’m not going to beat myself up over one extra red tablet!

…..So I’m off to wash my eyes out again-typing this in the garden has been a challenge too!…..

Results and Verdicts

…..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!…..

Duvet Days!

….Do you have those days when you just need to escape from the world, and junk out with the TV and a pile of newspapers and magazines?….

Well, if you answered ‘yes’, then you’re certainly not alone.

This mid-October-iness is starting to edge me into my difficult time of year. Once Autumn really hits , I have the need to hibernate til practically March. And I’ll do anything during this spell of time to avoid my lungs landing me up in hospital. Gee, and how original that would be! So at that first twitch of ‘uh-oh!’ I climb into my divan in the spare room with everything I could possibly need to make myself stay quiet, resting , napping and, hopefully…..feeling better.

And with Julian now mid Night Shift and sleeping during the day, all this week, I need to be quiet in the house anyway, so the timing has been perfect for my few Duvet Days, if ever there could be perfect timing to feel like my lungs were becoming a little too stroppy and my energy level had drifted into non existence.

But I’m not as incarcerated in my home hospital cosy comfort, as I would be in real hospital-I am still running the house. There is always laundry to do and ironing, and meals to cook and washing up, and cleaning! Yesterday I made myself venture out into the front garden to sweep up the leaves. And this morning when J came home, I chucked on my sloppies and we sloped off to the grocery store as supplies were running low. I’m now stocked with stashes of snacks and hoards of healthy veggies!

And I’m definitely feeling better for having had a weekend propped up on four pillows and with more newspapers and episodes of MTV Cribs to watch than you can calculate! Importantly, I didn’t take a PF for 2 days and I’m happy to report that today my PF and FEV1 have both elevated from their lowly depths. I’m also riding out this stage of my awkward Pred reduction with the enforced rest and Yes, distraction is the best cure for dyspnoea and crampiness. And mine has become pretty chronic of late. Also, in this little room I have my workhorse neb, my constant supply oxygen machine (Elliott) and two wonderful big windows to let in lots of fresh air, I’ve dozed a plenty under my duvet, in fact I think I’ve slept more or less anytime, like a cat: Scrabble on the iPhone does this heavy thing to my eyelids. So does watching endless episodes of Barefoot Contessa on the Video/DVD machine I’ve also got in front of me in this little bed.

Yes, this is my favourite room in the house, and it’s where I can be found when I’m home and J isn’t!

Blissful and Medicinal!

….And I’ll  probably hardly budge until I’m due at school on Wednesday….

20mg of Monsters!

….Ach, nothing much to write but….

Yep, four little red monster pills. You may remember this post, last Saturday.

I’m biting the bullet and continuing to tough this wean out. I don’t exactly think the week has been a case of “Hallelujah” , but the longer I prolong the tougher it gets to be tough! So it’s 20mg from today and hopefully, back to baseline next week (10mg) or “Take TWO daily” as the packet says.

And why am I just being so gung-ho?

I’ve had enough.

My lower back is kiling me and I’ve got enough crumbling and bone loss there as it is. Lungs will have to comply else I’m putting them in Detention-and I’ve got that duty coming up on Wednesday as it is!

Thanks to Steve for email chatting to me yesterday and spurring me on. I emailed my Docs afterwards and was told to ‘do as I felt, without being too hasty’. Lord, that was scientific if ever I’ve heard it-but it was late Friday afternoon!

….And I sure ‘felt’ like ‘doing’ 20mg this morning!….

In need of P.E.P.ping up!

….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 P.E.P.ping up and I hope this works, it’s a miserable feeling….

Six Red Monsters!

….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!….

T.W.T.W.W.T.W. So how were the lungs?

….That Was The Wedding Weekend That Was-So how were the lungs?….

In a nutshell, Pretty Good! Probably due to one word, adrenaline. I do tend to thrive on it to get through important events, but usually suffer in the come down from it.

But I have to say, I can’t complain one bit. I did of course take everything in the anti-asthma arsenal with me, and had it all laid out on my bedside table next to me. And used a fair amount of it too!

There you have it-all of the above, plus 25 foot of oxygen tubing trailing behind me around the hotel room and bathroom. And I could practically get to Mum and Dad’s room on the same ultra long cannula!

So how did I cope when the naughty little bellows started a-kickin’ off? Well, I made no secret of allowing myself necessary time out. I made sure I had my oxygen either with me, close to hand or in the car and topped up on it for 15 minutes at a time when I was becoming unbearably puffy, at the same time, double (ventolin + atrovent) or triple (2 ventolins +atrovent) nebbing!

I did have my quota of wonky lung moments-the worst of which was in the car on the way back from the church to the reception. I whacked up the O2 and got in a triple neb during the journey, and managed to clear the congestion and tightness that was building in an ominously uncomfortable way. It felt like I had been inhaling lumps the size of tennis balls right in the middle of my sternum-quite a nasty pain that had me almost doubling up on the walk back to the car after the photo shoot.

I seem to be using my oxygen almost all the time now, a good 10 hour overnight session and lots of out and about sessions during the day. I don’t know how I would have coped this past weekend without the ease and accessibility of my new portable concentrator and the trusty Pari travel neb.

I found the air in the hotel room quite hardgoing and humid too-no aircon-but we had a stand alone fan which J and I ran continuously for the duration of our stay and this really helped cool and move the air around, together with the window wide open.

In some respects the worst of TWTWWTW was the pollen in the countryside-we were both very dosed up on Fexofenadine and the humidity was at times, horrid, but the fan seemed to cure ours.

I am so pleased my lungs held it together-especially because I’d done a swift Pred taper in the few days before and was down to 20 mg.

….So that was how my lungs were in That Was The Weekend Wedding That Was!….

Postscript: The title of this post is somewhat of an homage to the satirical programme That Was The Week That Was, first broadcast during the960s, and absolutely hysterically funny!

Inflaty Flares, Fire-Alarms and a McFlurry!

I know this is a whole day after the events…

…but  considering I had a 12 hr school shift yesterday and was paralytic with exhaustion after last night’s Parents’ Evening, I just couldn’t blog.

I haven’t been sleeping well recently. Not that asthmatic lungs allow me to sleep like a dog these days, but even with pillow mountain I do manage to succumb to the exhaustion I feel. I’ve been aware that I am stuffed full of air more than I used to be. Discomfort and distention. I am a diagnosed moderate air trapper (nice to be moderate at something!) And I know in some ways I have slacked a bit from the physio I should do, drainage, huffing and using a PEP device, (the huffing drives J mad, the PEP device gives me a headache!) but I am simply always too tired and figure my swimming is my pulmonary therapy of choice these days so if I’ve swum and shifted a reasonable amount of air and lung junk, then hopefully I’m not backing up and stacking up.

But I have been swimming, lots. And I realise I’m hyper inflating more too. So after 2 or 3 incredibly severely agonisingly uncomfortable and anxiety packed air trapped nights, in the last week, I spoke to my lung docs (Team) yesterday, and told them. Realistically, I need to do Spiro when I’m in a hyper inflaty state. So I may well try to do hyper inflaty inducing things before my next routine Spiro (!) Their theory is that on my ‘home’ days I am under breathing. OK, so my idea of how I am breathing is not quite realistic. I shift less air, get used to shifting less air, feel tight, get used to feeling tight, fail to take the necessary deep breaths, go swimming and only use the top of my lungs, and exacerbate the process unknowingly. I keep taking in air, because that’s how I am, gasp, gasp-if you’ve spoken to me, you’ll recognise my  innies and not so much of the outies, because they’re just wheeze, wheeze and it’s hard to get the air out with the wheeze, wheeze going on! It takes me so long to get the full amount of air out that I don’t really manage to or in front of people, try to disguise the wheeze, wheeze, and will do my cough, cough thing!

And I’m always at my worst on Wednesday nights. My 3 worst hyper inflated nights have been the last 3 Wednesdays. My Doc’s suggestion is that my overbreathing to compensate my necessity for breaths at school then fills me up too much as I can’t spend the time to get it out again and by the evening I am like a barrel of over blown ballooniness.

Nice…….not!

I really need to find extra time to practice expiration techniques within the day on my working days. Hence the PEP therapy which can help splint the airways open on exhalation. If I’m tight I’ve really now got to stop then and there and deal with it. And not carry on thinking I’m capable of riding it out until I get a chance to deal with it. My lungs don’t wait they have their own time scale of events…….we’ll see. Next Wednesday will be my test. Oh, and due to the flariness of my lungs-((they’re not twitching, they’re just being dumb atm)), I am not allowed to attempt anymore Pred reduction. “Pants on the ground”. I was doing a Speedy Gonzalez here and now my Team have  kiboshed it!

Oh, and if you’ve been around on Twitter with me these last 2 days, you may have noticed me moaning about a certain school’s emergency alarm system………Dear Mr Fire Alarm, I know you’re often not needed but could you please  stop making your presence felt, every time somebody uses a kettle, solders wire in technology, makes toast or switches on the coffee machine. Gee your sensors are so sensitive I’m even scared my neb’ll set you off…

3 alarm drills in a week, actually equating to 2 in 2 days. All of them in the rain and freezing cold. All of them wasting 20 minutes of  time. Even though I was out there on the tennis courts lining up my form class on scootie like some kind of pink cowgirl, NONE of them were at all fun. The least fun and most ridiculous of all being the 3rd one which went off during last night’s Parents’ Meeting, at 5.30pm. Such pandemonium. Sigh. Did I mention my lungs detest the damp. 3 hours of constant talking-a fire alarm and dampness in my lungs. And I wonder why I’m inflaty and flary at the moment.

But anyway, my reward for lousy lungs and awful airways was a delicious ice cream. J took me for a drive after dinner last night as I said I’d fancied the new mint choc Mc Flurry, but  apparently that offer had finished-darn. So he got me this one……totally delicious (It’s sitting on my piano, btw!) The toffee crispiness was fine for me as it’s basically rice crispies so GF. And I added extra toffee sauce at home. Totally naughty and very needed. Plus I had a small glass of Belgian lager and a tiny valium. Just enough to lull my lungs after all that gaspiness at the Parents’ Evening. I definitely slept better, ok, so I coughed and was a bit puffy but  was much better than the previous 2 nights and the previous diabolical Wednesdays.

Other lungy suggestions-squeezing, squishing, measuring the amount of distention around my sternum….oh and full Lung Function, minus medication, the whole shebang coming up in March. Hate it. I always get worse numbers than I feel I have going on. In spite of busting my gut blowing the tests. Why do we bother, when…

…Life can be such a lot of hot (trapped) air!