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….


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!….

Important ID for Invisible Illnesses

September 18, 2010

…Do you wear some sort of Medical ID for your Invisible Illness?…

Are you Diabetic, Epileptic, or Allergic?, to mention just 3 examples.

This is my 3rd and last post for Invisible Illness Awareness Week, and I have chosen to write about the importance of wearing some kind of medical ID. I’m not advertising any particular brand or kind, there are many out there, and it is as much a matter of personal preference as it is of utmost importance. However, I have worn a MedicAlert bracelet for nearly 6 years now-as it was the one recommended to me by my Doctors, and as a charity, I choose to donate to their cause, (which is why I can display their logo in my sidebar). I support them because they are the only non-profit making, registered charity providing a life-saving identification system for individuals with hidden medical conditions and allergies.

And the clue in the above quote from their website, is in the word hidden.

You cannot look at me and see what allergies I have, what medications I am on and indeed, what (Invisible) Illness I suffer from. Therefore I carry and wear these:

If you are somebody who like me, refuses to be reclusive because of your Illness, and who wants to travel and have adventure in the big wide world, then really, wearing Medical ID is a no brainer.  Wear it or at the very least, carry it about your person: there is absolutely no knowing where you might be, and whether you’ll find yourself accompanied or alone when you are next taken ill, away from the safety of your home environment.

I once lost mine, and it was mailed back to me as the person who found it rung the company number on it and sent it back to them. I was so grateful I would have given a small, token reward!

These days, Paramedics are trained to first look for any ID-whether it be a bracelet or a necklace-and if yours is sensibly worded, it really could save your life.

On a personal note, the reasons I was strongly advised to wear Medical ID were because I am on permanent steroids, and this is a fact that needs to be known. I am also allergic to Penicillin, Aspirin and Ibuprofen, again this is fundamentally important, if I end up in need of emergency care. Plus, one of the medications I take for my lung illness needs to be monitored with regular blood tests, and I can become seriously ill if I am given too much of it-(something called a loading dose), in the ER.

We have worded mine so that all the drug names are in their generic, UK brand and USA branded names. We have also importantly added dosage instructions and blood level results for both countries. If like us you travel a lot, this is extremely important as the UK and USA measure several of my blood results on different scales-this is something I know would also be necessary for blood glucose levels in the case of a diabetic patient.

I have several whacky food allergies, and related illnesses-My severe form of wheat allergy-means there are many generic brands of paracetamol that I cannot be prescribed because they contain wheat. Most cough medicines are an attractive red colour, yet I am allergic to red food colouring and again, can only take certain brands. All of this information can be found by way of one phone call to the number on the back of my bracelet. It is also typed in a little more, but still succinct  detail on the wallet card that both of us carry. Plus, any doctor is able to retrieve the full and vital medical records and my entire Asthma Treatment Protocol through quoting my membership number.

I really do advise anybody with an Invisible Illness to wear some kind of medical ID. I believe this Awareness Week is not just about bringing to people’s attention the symptoms, circumstances, pain, anxiety and suffering of so very many people, but  is also a chance to share our various and varied experiences and to give advice on ways to live life to the full and self-help eachother.

….So this is just another one of my little gems of advice!-Get One! and wear it proudly-you’ve earned it!….

30 Things About My Invisible Illness (You May Not Know!)

September 14, 2010

….As part of my posts for Invisible Illness Awareness Week, here are…

…30 Things About My Invisible Illness (You May Not Know!)

1. The illness I live with is: Chronic Severe Difficult to Control Asthma, Gluten/Wheat allergy and Migraine.

2. I was diagnosed with it in the year: 2005 (Adult onset version of severe difficult Asthma), 2006, Wheat Allergy and since childhood, aged 6 (Migraine).

3. But I had symptoms since: Mostly throughout my life on and off for both illnesses.

4. The biggest adjustment I’ve had to make is: Not being able to plan things so easily-not knowing what is around the corner.

5. Most people assume that ‘asthma’ is just a blue inhaler and migraine is just a really bad headache!

6. The hardest part about mornings are: My lungs are very congested and I need to cough a lot and require many medications. It takes me so much longer to get ready in the early morning than mid morning!

7. My favourite medical TV show is: Embarrassing Illnesses (Dr Christian Jessen)

8. A gadget I couldn’t live without is: My iPhone

9. The hardest part about nights are: Constantly waking up in the small hours, feeling like I am suffocating and not being able to breathe, and often with a terrible migraine

10. Each day I take 12 different pills.

11. Regarding alternative treatments I have tried several types of homeopathy both for my lungs and headaches, physiotherapy, reflexology and Chinese Herbs.

12. If I had to choose between an invisible illness or visible I would Probably still choose to have an invisible one.

13. Regarding working and career: I used to teach  full time before I became this ill in 2005. I had a lengthy period off sick in 2005-6 and fought tooth and nail to return to work in some capacity in my old job. I had a phased return and then settled on 2.5 days and have managed to increase to 3 days. I work in the same school, and with many of the same people who knew me before I became this disabled by illness. It has been a hard adjustment for myself and them.

14. People would be surprised to know: That I used to run regular half marathons and was very strong and super fit!

15. The hardest thing to accept about my new reality has been: Not being able to play sports/run anymore, although I started doing daily gentle swimming in Jan 2008.

16. Something I never thought I could do with my illness that I did was: Enjoy swimming so much-even in the cold and wet of the winter months!

17. The commercials about my illness are mainly on TV in the USA and involve happy people with lovely happy lifestyles, taking a daily dose of an inhaler and always feeling better. Magazine articles usually show the sufferers as being older people, or children, seldom people my age, (early 40s), trying to battle on with  a severe form of the illness.

18. Some things I really miss doing since I was diagnosed are: Playing my Oboe and riding my bike, and the freedom to do things, spontaneously, as I always have to plan days out and weekends away so meticulously, remembering  all my drugs, nebs, oxygen, and food supplements.

19. It was really hard to have to give up the life I had: fun, carefree, never thinking twice about going out, not worrying about the future.

20. A new hobby I have taken up since my diagnosis is swimming (Jan 2008) and this blog (Jan 2010).

21. If I could have one day of feeling normal again I would leap on a flight taking a day trip to Paris, without having to first arrange paperwork from my GP for all my drugs, nebs and oxygen requirements. I would walk around seeing the sights all day, having a picnic by the Seine, visiting the markets and churches-and fly home again in the evening-never once having to remember to take a tablet, not needing to constantly sit down and rest, not having to do a neb treatment every few hours, to try and fight the breathlessness and not needing to carry my personal oxygen concentrator. And on that wonderful day, I could eat some stinky french cheese and drink a glass of red wine without any risk of my head going ‘bang’ with a stonking migraine. And because I wouldn’t have to worry about my stomach being upset, I wouldn’t have to be constantly panicking about where the toilets were!

If I couldn’t get a quick cheap flight to Paris, I would get out my oboe and play it again, without keeling over trying to blow the thing!

22. My illness has taught me: to live every moment to the full, but to always be compassionate and understanding of others less fortunate in their lives and with their invisible illnesses.

23. Want to know a secret? One thing people say that gets under my skin is: “But she doesn’t look ill”.

24. But I love it when people: talk to me like I am a completely normal person. Because, really, I am!

25. My favorite motto, scripture, quote that gets me through tough times is:Unstoppable at Achieving the Unthinkable: This is really my mantra.

26. When someone is diagnosed I’d like to tell them: To be hungry for information. Learn everything there is to learn about your illness, and never settle for one opinion. Do as the doctors say and find your own routines that work for you. Keep as active as you can, work through the breathlessness and try to keep yourself as ‘in condition’ as you possibly can. Not every person’s version of the illness will be the same. Accept some treatments may not work for you. Investigate all others and all avenues. Read and Learn and above all, Live!

27. Something that has surprised me about living with an illness is: How many people can really empathise with me, how many friends I have made, both in real life and online, and how many things we have all learned from each other, through sharing our illness experiences.

28. The nicest thing someone did for me when I wasn’t feeling well was: to come and sit by my hospital bed for hours when I was truly feeling my worst. She kept watch over me and truly understood what I was going through. She prayed for me. She is now one of my closest friends.

29. I’m involved with Invisible Illness Week because: as somebody who suffers from invisible illness, I feel it is my duty to share my experiences in the hope that others may learn and gain some strength from my experience.

30. The fact that you read this list makes me feel: quite humbled!

Invisible Illness Awareness Week

September 13, 2010

….I’m displaying two badges in my RH sidebar which say….

I am blogging this for Invisible Illness Awareness Week.

Do you have an Invisible Illness? Of any kind? Do you look good but feel rotten?

Those of you who know me, know I suffer from a severe form of difficult to control chronic asthma.

But you, reading this, may also have an invisible illness of your own. One that affects every part of your life, just as my illness affects mine-perhaps, even more so.

  • How many times have you felt that you were the only one?
  • That people didn’t understand you because they didn’t know you?
  • That people thought you were making it up?
  • That people just assumed you were ok because you looked ‘alright’?
  • That being ‘well’ was something you’d never be, or you’d never feel?
  • That those around you-your nearest and dearest, couldn’t cope?
  • That you couldn’t cope?

Probably multiple times, and most likely, most days.

Life with an invisible illness harbours a gamut of emotions. You feel anxious, insecure, guilty, frustrated, confused, misunderstood, misrepresented, fearful, emotional and many more. And to cap it all, you think people don’t understand, because they can’t see what is going on inside of you.

Therefore, because your illness is chronic, incessant, unending, unstopping- alas, it’s invisible.

National Invisible Chronic Illness Awareness Week is held annually in September and is a worldwide effort to bring together people who live with invisible chronic illness and those who love them.Organizations are encouraged to educate the general public, churches, healthcare professionals and government officials about the impact of living with a chronic illness that is not visually apparent.

Back in February, I wrote a blog post entitled False Impressions-Do you Look sick?. In it I wrote this:

When asthma is such a hidden disease, how many of you actually look sick with yours? Do we give a false impression of being a well person, or is it possible to tell that there is something going on inside that just isn’t right, and just by how we look?

So how when we see anybody going about our and their daily lives, do we know what is going on inside of them? Of course, many diseases have outward appearance manifestations-do we sympathise, empathise or pity those people? Ridiculous really, considering we also have a chronic illness – just one that they cannot see.

I suppose, nowadays there are aspects of my illness which make it a bit more obvious.

For starters I carry a POC (Portable Oxygen Concentrator)

Plus, because of the severe breathlessness I get, when I’m at work, 3 days a week, I ride around on my little mobility scooter.

But without those aids, I am just me. I don’t look any different from anybody else really. There is nothing in the way I act or dress or appear that shouts out ‘she’s got a chronic illness’ and that is why this week, September 13-20 many people worldwide are joining together to speak out and speak up for those of us who suffer form a Chronic and Invisible Illness. Just because we don’t necessarily look sick, that doesn’t mean to say we aren’t sick.

The number of times I’ve been asked to show the photo on my blue badge makes me in itself, sick! Why do so many people assume that you have to look disabled to be disabled. Going back to my February blog post, how should a disabled person look?

Here is something else that you might or might not know about my invisible illness:

This is a photo of  one month’s supply of my drugs and food items. So every 4-5 weeks this lot arrives in multiple bags and I get the chore of piling it all into my kitchen larder!

Not that much room for basic staple house hold foods now, is there?! And this is a small example of what having a chronic Invisible Illness can be like. How many people, for instance would know that about me, if I didn’t blog that photo?!

So whatever your illness, just remember, there really shouldn’t be a difference in who you are, how you feel, and how much you can bring to the world through your life. My world has become so different because of my illness, but I truly believe it not only makes me a better person in the long run: more tolerant, more understanding, more sincere, more genuine, and one that possibly has even more to offer than before. I definitely live a richer, fuller, deeper life now, with my chronic invisible illness. Plus I have the closest of relationships with my Partner, my Family and my Friends.

And importantly, I have learned one major thing in all my illness and suffering…..

….I have learned the true meaning of compassion….

12 of 12: September

September 12, 2010

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

1) I picked our first mini pumpkin, and peeled, deseeded and roasted it with olive oil, black pepper and salt. A lovely mid morning snack!

2) Julian was having a morning of DIY-ing. First he was rewiring one of the time modules for our lounge lights, which operate on a dawn to dusk automation system.

3) I was happy to see my vine tomatoes are really beginning to ripen now as we had a sunny week last week.

4) Julian’s other DIY task was to fix the letter box. The postman had rammed it was a large package that had pulled the rubber seal off the inside. All glued and fully operational again!

5) Meanwhile, I checked on my new grass seed which has been in 2 weeks and, as you can see is growing beautifully, patch repairing the front lawn after the summer.

6) We both rushed inside to catch the end of the Italian Grand Prix-Alonso won (boo-hoo! : poor Hamilton, alas, a spot of driver error, but at least Button came second!)

7) In the afternoon, we nipped off to Waitrose, and grabbed our Quick Check scanner…

8 )…Because we needed ICE!

9) And hilariously, they were practically giving away bananas. We got this bag for 5p (about 8 cents!) Apparently they’d ordered far too many boxes and needed to get rid of them-lucky us!

10) Then we had a cup of tea at his Mum’s house, late afternoon, and Julian was playing ball with Poppy in the garden.

11) After all the activity of the day, I sunk into a really bubbly bath. Ginseng and Rosemary. Very soothing for aching muscles and sore, tired lungs. BTW: the tea lights are battery operated ones! Can’t put candles near my lungs!

12) So our day finished with a pizza supper. This is a photo of Julian’s, because, quite honestly, my GF version ended up looking like Poppy the dog’s dinner, and my egg broke, which put me in a really moody mood for as long as it took to scoff those pizzas, and as you may know, I am a pizza addict!

And that marks the end of my 12 of 12 for September, 2010. Hope you enjoyed my day!

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

Watch Out-They’re About!

September 5, 2010

….It’s that time of the Seasonal Shift again!….

The time of year when the Summer gives way to the Autumn and the EPPs (Evil Pollen Particles) disappear in favour of their cousins, the EMSs (Evil Mould Spores).

Watch Out! They’e About and they got me last night!

There are thousands of types of mould, however, only a few of them are currently available for allergy testing. It is estimated that 60% of the population may be allergic to pollens and about 20% of those may have mould sensitivity issues. If you have been tested and you know what affects you then you’ll hopefully have an action plan from your Doctors. Even if you don’t have asthma issues, these are some of the possible effects of mould irritation:
I know I need to step up my steroid tablets, (Prednisolone), and double the dose of my nasal spray, (Nasonex). The worst lung infection I have ever had was from a colony of Aspergillus which can cause pneumonia type symptoms. It thrives in damp soil-And I love to potter in my garden-this is another reason why people with a ‘wet’ lung disease, such as some types of asthma and CF, shouldn’t keep house plants. They are a breeding ground for moulds.

See these two factors below for more information and clickable links:

So if like me, you are mould sensitive and are having symptoms; (I had a full blown asthma attack that required 4 nebs to recover from at 8.30pm last night, simply because I went out into the garden to check on something random-well, my grass seed!), then see your Doctors. You may need to step up Protector/Preventer and/or Reliever type treatments or take a course of Prednisone to get you through this month.
Autumn is a time when, because the weather is changing, we may not be needing so many windows wide open, and so by shutting them, particularly, (like you should do for pollen), in the evening, you may find you can keep the EMSs out! Wash net curtains, damp dust, invest in a de-humidifier if your house is really damp. (I lived in the country, in a very old stone cottage in the mid 90s and Boy!, was I sick in the Autumn, every year-that place was dripping water from the walls it was so damp).
Oh, and if you live in the UK-listen to the Sky News weather forecast as they are giving out mould spore readings, much like the forecasters do for pollen.
….I was not at all surprised to find out that the current reading for London and the South East, is Very High for EMSs!….