2011 in review

January 2, 2012

The WordPress.com stats helper monkeys prepared a 2011 annual report for this blog.

Here’s an excerpt:

The concert hall at the Syndey Opera House holds 2,700 people. This blog was viewed about 19,000 times in 2011. If it were a concert at Sydney Opera House, it would take about 7 sold-out performances for that many people to see it.

Click here to see the complete report.

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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….

Important ID for Invisible Illnesses (IIW 2011)

September 19, 2011

…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 2011, 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 Illnesses (You May Not Know!)

September 14, 2011

….As part of  Invisible Illness Awareness Week 2011, here are my 30 Things About My Invisible Illnesses that you may not know about me!

1. The illnesses I live with areChronic Severe Difficult to Control Asthma, Gluten/Wheat allergy and Migraine.


2. I was diagnosed with them in: 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 all 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! And people who can’t eat wheat are just fussy!


6. The hardest part about mornings are: My lungs are very congested and I need to cough a lot, do physio 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 17 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, and this year, 2011, I have been working at improving my walking with our little Chihuahua, Anna-Bell.


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! And become an all weather dog walker/owner!


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), and being a dog owner, (Jan 2011).


21. If I could have one day of feeling normal again I would  pile Julian and Anna-Bell into the car and drive out into the country for a wonderful out door type of day and a pub lunch somewhere. Not having to worry about allergies in the air, pollen, or wheat flour and gluten in the food in the pub. And not having to think about nebs, and O2 and physio and drug routines.

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 2011

September 13, 2011

….I’m displaying a really cool badge in my RH sidebar which says….

I am blogging this for Invisible Illness Awareness Week 2011.

This year’s slogan is “DEEP BREATH START FRESH” That’s kind of what you do when you have asthma. You hope every breath will be a fresh and a better one. And those of you who know me, know I suffer from a severe form of difficult to control chronic asthma, plus I have  a diagnosed wheat gluten allergy and suffer from rotten migraines.

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 2010, 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 12th-19th 2011, 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 2010 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….


Tribute to Red 4(Jon Egging) RIP

August 22, 2011

…..In the light of the sad event of Saturday, this has now been put on You Tube…..

I felt it fitting to share it here as I had 365’d the event yesterday.

 

 

If, like my Family, you love your planes, this is quite hard to watch with the music, so I hit the mute button and was able to just enjoy the beauty of their flight.

Thoughts and prayers to all who knew him personally.

In true British spirit, the Bournemouth Air Festival did go on and was a triumph, albeit minus the Red Arrows, yesterday.

…..Such a sad loss to a brave and super young pilot…..


A Survey on Pred Dosage

June 25, 2011

…..In response to so many of us on Twitter discussing this recently, I’ve created a simple Poll….

Here are some facts about Drs and Pred in the UK (((in my experience of my Drs!)))

  1. 40mg at 5 -7 days is the norm but often up to 2 weeks may be necessary.
  2. Drs do not usually taper you if you have only been on a short burst as in 1. above.
  3. Consultants would rather you were on a constant low dose (oh hello!) to stem the need for multiple emergency bursts as in 1. above.
  4. Consultants do not think that there is any point in being on 50mg or even 60mg as it has not been proven to work any quicker, it is just that your adrenals may require it due to insufficiency.
  5. GPs often disagree with Consultants over 4. above!
  6. Consultants will tell you to bolus dose before starting a burst course but GPs have little knowledge of this.
  7. All Drs will tell you to take your Pred in the morning, as that is when your body needs it the most due to the natural drop in cortisol being around 3am.
  8. If you find you really are wired and cannot sleep, split the dose taking half am and pm .
  9. It is really best not to take it at night as your body’s needs for it are highest in the morning.
  10. Pred pills do not contain calories. They do not make you put on weight by themselves-although your thirst may be increased.
Also, if like me you have stomach issues, ask to be prescribed the enteric coated ones, then you wont have any sore tummy troubles.
Oh, and always take it with a little bit of light food, yoghurt, small piece of toast etc. (Cupcakes and Nutella sandwiches are of course the exception here!)
Julian Says: Does your Husband, Wife, Partner, Best Friend, Significant Other etc, have to hide the kitchen knives when you are on a Pred overload. Apparently I am now a fire breathing dragon. Hmmmm!

…..Feel free to add any other dosage info in the comments below….