Happy Hallowe’en

October 30, 2010

….This huffy puffy hacker just wants to wish you all a really Happy Hallowe’en, have a great Holiday Weekend….

Have a great time making your pumpkin lantern, and remember,  you can use the pumpkin pulp to make into a yummy pie-very good for you, rich in fibre and vitamin A!

Don’t be scared when you’re out and about by any of these creatures! (yeeeooww, hiss!)

And above all, look out for any Wicked Witches who may try and steal your Trick or Treat sweets….

….May you be Tricked and Treated to lots of Spooky Scary Screamy Times and be safe, be warm, and wrap a scarf around your face if it is foggy or smoky out there!…..


Sea Breezes….

October 28, 2010

….to help heal the coughs and wheezes!….

We are so lucky my Parents have this stunning flat on the tops of the cliffs by the beach in Dorset, and we can come down for R and R at a moments notice really. Unfortunately our week away has been blighted by my dose of the seasonal flu, but yesterday we bundled me, wrapped up in scarves and coats, into Falcon and popped out to have Afternoon Tea at The Haven Hotel, one of our favourite treats. The beach of course was deserted, but so fresh and beautiful, I was determined to get a good dose of sea breezes in my lungs, Mum had said they’d help!

This time of day, 4pm in the UK, the sun is so low in the sky that everything looks in silhouette. This is a view looking towards the Purbecks and Brownsea Island in the distance, where the chain ferry takes you across from Sandbanks pennisula to the headland and Shell Beach. It was actually really sunny, but I was playing around with the HDR setting on the iPhone 4!

So we had a lovely pot of Earl Grey and some biscotti type things which J scoffed seeing as they weren’t GF, toddled around a little bit outside in the freshness, inhaled as deeply as my cough allowed, contemplated the peace tranquility and beauty of Mother Nature and saw the huge Brittany Ferry go through, which I documented last night on yesterday’s 365.

Driving round the one way Panorama road, J said I must snap the fast appearing sunset. The weather in our part of ‘holiday’ Dorset is a microclimate, and yes we do have palm trees here!

And this is one of Poole Harbour from further round the bay.

It was so glorious to be a little bit more vertical. However, in the morning we had spoken to the pharmacist in Boots because I knew I needed some sort of ‘feel good’ cough syrup and didn’t want a reaction like my nasty Night Nurse experience again. And it appears the new Benylin Mucus Cough has exactly the same ingredients as the old Benylin non drowsy-so I’m sticking with what I know and trust, and am on 4 doses a day of that now to help, Plus unfortunately the need for antibiotics has transpired and I’m back on 200mg of Doxycycline a day as The Cough has gone disgustingly green (apology if TMI!)

So we also went out for a yummy Chinese last night-a break with tradition as it was a Wednesday, but I struggled to sit at the table long enough to eat everything, even though it was astonishingly scrumptious! The Cough got a few “are you ok?” comments which was embarrassing. Still, it wasn’t just me-it’s that time of year when….

….it’s inevitable most people are going to get ill….


Full on Flu or less?

October 26, 2010

….Ok, so I’ve still decided to avoid having my flu shot….

…because I think I’ve already got it anyway…..!

I’m sure it’s perfectly possible to have a mild version of flu, something less that the full on seasonal variety, and then have a shot so you don’t get the full on version, but last year’s shot gave me the worst reaction I’ve ever had and I’m not about to put myself through that again!

So why do I think I have something like flu?

  • My limbs ache, and nothing is helping-I’ve tried paracetamol, tonic water and ginger tea but I still ache.
  • My head hurts so much all I want to do is lie down
  • And did I mention the cough? I think I now know just what an end stage CFer goes through every second of the day and night, and I’m used to coughing!

The absence of fever is the odd one. A Doctor would be unlikely to diagnose full blown influenza without a temperture of 99F or above, mine has barely got above 98F. But I do run cold, probably as my BMI is low, and even when I’ve presented with raging MRSA and pneumonia, I have hardly had a fever to show for it.

But this listlessness, lack of umph, energy, enthusiasm and appetite goes hand in hand with having the flu, and I’ve certainly felt pretty down and depressed for a good week in running up to ‘the cough’ appearing on Friday. The cough, being what I tried to cure with a dose of Night Nurse on Friday night!

The Cough: Can you imagine the gurgling and vibrating of a large animal struggling to breathe but still drowning? Well, that’s been me every night and every day since Friday-but why 3am chooses to be the worst time, only science will know. Last night I actually vomited twice, my stomach is just so full of PND gunk. Lovely!

And poor J is like a sleepness zombie having endured this cough with me for several days now.

Percussion: (Of the medical not musical kind). It’s going on constantly in this household. Every time I am wracked with paroxysms of uncontrolable exhaustive drowning and gurgling, I get the Ravel’s Bolero rhythm drummed out  on my back by J, yes, day and night, poor guy. But it works, as any CFer would tell you.

Anti Biotics: “To take or not to take?”, that is the question.

Currently opting for the negative as I really don’t think this is an infected cough-it’s mainly thick clear and a bit yellow at times, that is not suggestive of my immune system going into overdrive.

So it’s continue with the house arrest, bed flopping, sofa surfing or full on duvet days as necessary until this Flu lurgy flies away.

My side bar has currently paled into insignificance. I haven’t taken a PEF-I couldn’t with this cough. I’ve been badly uncompliant about my O2 usage as I dont want to infect/reifect my self with cannulas. Daft, I know. My SATS are wavering, I’m stupidly stubborn, yes, for sure.

And although this is Half Term week, I haven’t made any plans, except to get down to my Parents place on the South Coast and breathe some healing sea air. Phew, no school tomorrow, if it was a school day, I do wonder if even stubborn me would be able to drag myself there.

The Asthma: Not even thinking about it-currently whacking mucus clearing hypertonic saline nebs left right and centre, and I had to bolus the pred last night too, but I’m doing OK!

….Although, I’m currently packing up enough meds and Sloppy Joes to at least allow me to get a change of scenery for a few days and my Dad has told J where the hospital is!….


Gross Green Gloop!

October 23, 2010

….Breathe a sigh of relief, this is not going to be a post  about lung  junk!….

*****Warning: Consult your Doctor before taking standard OTC cold remedies*****

I am currently suffering from a thick chesty coughy coldy thing. Lovely, not, and I feel especially rotten as school has been exhausting and I am not used to having colds as I so rarely get them. All I wanted was one night where I didn’t cough all night and keep J awake as he is now turning himself around from his week long night shift.

So he gave me a dose of the above OTC remedy. Well, he tried to make me drink it, but I practically gagged half of it up as it was so revolting, and wretched and spat the other half out after I had semi swallowed it. My list of things I positively will not eat now stands at two (the other being lychees!)

Let’s just say, I made a massive mistake. This stuff proved to be way too strong for little lightweight me-and I’d probably had less than a child’s dose of it.

I went to bed and felt myself drifting-not in and out of sleep, but more like in and out of consciousness. My whole body felt like lead. I could barely move my heavy limbs, and my fingers and toes felt numb. Several times I realised that I wasn’t even breathing as I was becoming apnoeic, and took great gasps of air in.

Yes it stopped me coughing, but it almost felt like it was going to stop me existing. Ok, so I exaggerate, but it was a nasty side effect, none the less, in the depths of the night.

I woke up from my slumber stupor at 1.30am and tried to get out of bed, I simply couldn’t move, there was no way I could shift my heavy lead like body. Good job I was not in dire need of the bathroom! At this point I also noticed that the O2 cannula was not on my face anymore. And in 5 months of sleeping with O2 on I have never once had this happen. So back into sleep I fell. Only to wake again at 6.30am, minus the cannula again, gasping, bursting for the toilet and not knowing where I was or which way was up. Somehow though, I did haul myself up off the bed. The nearest bathroom is the ensuite. I couldn’t find it. I stumbled into J’s office. Stumbled back across the landing completely tangled in oxygen tubing to the main bathroom, but couldn’t remember how to turn the light on. Eventually found myself downstairs (!) and made it to that bathroom.

I have no idea why I twice managed to rip the cannula off my face in the night. And the list of ingredients does not suggest that this stuff is going to have the same effect as Propofol, but I seemed to react badly to it. I would be interested in hearing if any of you have ever experienced anything similar to my night after the  dose of dodgy Gross Green Gloop!

A good night’s sleep, no. I eventually shifted my lump of self from bed at 9.30am when my Sister rang, and maybe talking to her helped me get the oxygen back in my system as I had a clanging headache and felt very very ‘post anaesthetic woozy’!

….Tonight I will have a standard dose of Simple Linctus, or Manuka Honey and lemon!….


Duvet Days!

October 18, 2010

….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….


12 of 12: October

October 12, 2010

…. So here follows my series of 12 photographs taken throughout today, the 12th of October, 2010.

1) I woke up and looked outside-it was the most beautiful Autumn morning, and one where I would have wanted to photograph the garden even if I didn’t have a reason too!

2) The nasty moment of the day- the Tuesday tablet. Yes I take this innocent looking little pill every week on a Tuesday and it wrecks me for the rest of the day. But supposedly it’s helping my bone loss. Eugh, I am being reminded of it now as I type, Heart Burn City, and that’s with a full glass of water and staying upright for an hour afterwards!

3) So whilst I was forced to remain standing or sitting bolt upright-I decided to fill the house with yummy baking smells and whipped up some decadent chocolate fudge brownies. Although these were a little crumblier and less fudgier than I wanted! Why do my brownies never turn out the same twice?

4) Next on the agenda today, the Exercise ECG test at Hillingdon Hospital. The appointment was moved (luckily) from 9am to a more desirable 11.30am and is now, thankfully, over and done with!


5) And we were starving when we got back to the car so drove in a bee line from the hospital straight to our favourite fish and chip shop in Eastcote!

6) Let the lunchtime carnage begin. ‘Battle of the tongs’ as we shared and devoured our fish feast!

7) And after Mr Piranha had attacked the remainder of the lunch so that there wasn’t even a measly iota of shrivelled chip left, he washed up and set to work doing some editing work on his LIGHTROOM 3 Catalogue, in case he suddenly decided to print some portfolio photos up this afternoon in Costco. Not a posed shot either-this is where Julian is and what he is doing, like always, when he’s home! (But I’ve never snapped him ‘at it’ before!)


8  ) Well, Julian did decide to print half a dozen photos up from this Summer’s photography in Utah/Arizona.  Superb value and speed as ever.

9) And whilst the photos were being developed and Julian idled away the time standing outside in the last of the Autumn sunshine, I was in my Opticians appointment for 40 minutes. First I had my contact lens check up then all the eye and sight tests. The guy had to step outside for a minute so I snapped this photo of the room I was in!

10) After my appointment we grabbed the few things we wanted from the aisles then checked out and drove home. It had been a busy afternoon after a busy morning. As you can see, we really didn’t need anything much-the water offer was so good we grabbed a couple of flatpacks, plus my statutory jerky and olives supply and a tub of Haribo sweets for my Wind Band!

11) So after unwinding, unloading, unpacking and of course undressing(!) I sank into a bubbly bath. Oh yes-I think I snapped  this bath tub at picture 11 last month too. Did I also have the glass of wine and olives? Probably!

12) And do you know what I also snapped as my picture 12  on the 12th of September-yes-pizza! So here are ours tonight, in all their glory. And yes mine is Cosky friendly, if you know what that means! I have added the olives, sundried tomatoes, cooked fresh spinach and free range farm fresh eggs. There is nothing better than a gooey yolky egg bursting all over your cheese pizza. You should try it some day! Quite delicious!

Good night all-England are about to kick off . They need my prayers!

See you next month!

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





The Gluten Free Way for Me (and now M-C)!

October 9, 2010

….These are some of my Gluten Free Store Cupboard essentials….

One of my friends has just been diagnosed with Coeliac (or rather, Celiac, as she would spell it, being an American). So this post is for M-C.

The important thing is not to be scared when you find out how much you can’t eat-if you’ve been poorly from eating wheaty products you would have been avoiding them for a while before you were tested and diagnosed anyway, so you’re probably already used to finding lots of alternatives to the normal gluten-riddled items.

I think in the UK we are very lucky as our supermarkets are absolutely stacked with superbly stocked GF aisles, and I can buy most of my favourite items off the shelf. But I have also had to make a lot of adjustments-I bake  tonnes of cookies and cakes now, and make bread and rolls that I can pop in the freezer. It doesn’t really look like regular bread but it tastes pretty good and makes yummy toast.

So do scour your local stores and health food stores. Buy GF flour and adapt all your regular baking recipes. A word of advice there is, GF flour has a funny consistency and you’ll find you always have to add more water than the recipes say. But  I manage to whip up cup cakes and cookies galore with my GF flour.

My Story: As a teenager I was smothered, head to toe in eczema. My Mum took me to a special allergy clinic at St. George’s Hospital in Tooting, which is one of the big London teaching hospitals. They had a specialist allergy clinic. We are talking about the mid 80s here, so allergy clinics were quite a new thing. I remember my 1st appointment. The Dr had one of those human body outline charts and he coloured the whole thing in on both sides, because I was completely covered in eczema.

I was prescribed a variety of skin creams, wash creams, hydrocortisone ones like Betnovate, and was told I needed to give up wheat. So, aged 16, this was the beginning of my life with rice cakes.

In 2005, my asthma developed into this indescribable form of Adult Severe Asthma, my immune system went haywire and the whole wheat allergy blew itself out of proportion and I was diagnosed with Coeliac after 3 separate tests. I have no intrinsic factor in my stomach and had been having to have routine regular B12 injections.

The dietician I was under explained that it is not uncommon for a person who has been suffering from pernicious anaemia to go on to develop a a full blown coeliac condition.

So since 2005, I have been avoiding Gluten in everything, not just a wheat free diet, although I was initially diagnosed with a wheat allergy and Gliadin allergy.

Most GF products are made from rice, potato or polenta (corn) flours. I love rice and potato, but did have to give up corn for a period of time, although this summer I have started being able to enjoy fresh corn again for the first time in several years, and have loved the delicious sweet buttery cobs the shops have been so full of! I also have to avoid Barley and Rye, but can have some oats-usually the processed ones are better than the whole raw oats.

I do have to be careful of sauces and shop soups, because so many of them are thickened with gluten. But many restaurants and chains now have GF menus and items. PF Chang’s for instance even has GF soy sauce and a completely separate and completely delicious GF menu.

A life without gluten and probably a few other food sources ( if like me (and M-C) you have some other whacky allergies), does not mean a life without yumminess.

Oh Yes, My Symptoms: You might not want to be eating when you read this-because the number one symptom for anybody with a gluten allergy is, crippling stomach cramps, the sort where you are doubled up, very soon after eating, followed by explosive and quite non stop diarrhoea! I also get  a bright red rash on my cheeks, resembling ‘slap cheek’ syndrome, and shiver and shake although I start running a temperature. This generally means the rest of the day is well and truly ruined whilst I camp out in, or very near my bathroom. If I eat gluten in the evening, I’ll be up all night. Worth mentioning too that with oxygen dependent dodgy asthmatic lungs the constant running for the bathroom is also no joy. Oh yes, and my skin itches so much that I have been known to scratch and scratch until it bleeds. I have also  broken out in hives all up my arms. Cetirizine Syrup gets downed very quickly when I have one of these really severe gluten reactions

The trouble is, there is one food item I just cannot give up, and my dietician has even gone as far as allowing me one a month-the ‘monthly scour out’, as she calls it. And yes, if you know me, you’ll know what it is-and the fact that  there is no decent GF substitute that fills the void. There just is no life for me without the real thing……


….So unfortunately, I do occasionally still suffer for my sins!….