Airless Indian Summer

September 30, 2011

…..Its currently hotter here than in Hawaii!…..

And whilst it isn’t hot by some people’s standards, namely my friends in Palm Springs, where it is still in triple digits, our 84F is certainly out of the ordinary-about 18F above average.

We are currently having a really hot Indian Summer spell. They’re even talking  about it reaching 90F later in October! But of course, I keep getting AirTexts about the moderate air pollution levels that are also hanging around.

It has certainly hit my lungs at school, particularly yesterday. I had to indicate to my classroom assistant to instruct my class to clear up after lunch and she had to dismiss them for me as I simply couldn’t breathe. I always teach with the door open, but with no fresh air coming in it was like sauna meets steam room, and apparently we have air con? My lungs love dry desert heat but hate England’s almost Flordian humidity. I wouldn’t go as far as saying I have an invisible illness anymore, it’s rather obvious I clearly can’t breathe at the moment. The guy who came to fix the blind yesterday tea time commented on my asthma “are you really ok?” “that’s the worst I’ve heard anybody?” He must have asked me 5 times if I was ok. But I really was gasping and had just pulled out the sofa bed so he could get to the window easily. Shucks!

Thank the Lord we forked out for our full house air con system this summer. Julian is on Nights and has his bedroom set to 20C which is perfect for him sleeping in the south facing brick front of the house. He has had no idea of the melting pot going on outside all day.

So after multiple extra nebs, a bit of added physio as I was really inflamed and producing more mucous yesterday afternoon (sorry), and a bolus dose of Pred last night, I am ready, I hope, to face a long hot gruelling airless and no doubt very breathless day at school.

All I can do is dose up, and take it very slowly. And keep as many doors open as I can in the educational greenhouse I teach in.

…..Going to be a hot airless weekend out there too…..


Advertisements

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!….


My Post Was Published (Invisible Illness week 2011)

September 16, 2011

Dear Susannah

Thank you so much for your lovely blog. it will post 9/16 at invisibleillnessweek.com

Lisa Copen
Founder and Director
Rest Ministries, Inc – Joyfully serving the chronically ill
http://restministries.com
http://RestMinistriesOnFacebook.com

And here it is!

What Does Invisible Illness Look Like?

Apology if you’ve read it on here a few days ago. I’m really chuffed

…..And my head is going to explode with pride!…..


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….


12 of 12: September 2011

September 12, 2011

…. So here follows my series of 12 photographs taken throughout today, the 12th of September, 2011….

So here I am, back at school, and really enjoying it! Today is my Sister’s Birthday, so Happy Birthday, Sarah-Jane. We had a good end of the summer and were really happy to learn Anna-Bell has passed her Rabies Titration blood test and gets her Pet Passport. What a clever little doglet she is. We have finished our two sessions with the Trainer and have switched her to a different food which she is adoring. I have almost harvested all the vegetables now. Just the remainder of the beans, tomatoes and chillis left. It has not been much of a summer vegetable crop this year due to it being below average temperatures and above average rainfall. We were supposed to be getting the tail end of Hurricane Katia today-it is certainly very very windy out!

Anyway, this is my diary of today.

Enjoy!

1  ) 7.25am Out in the garden with AB. Well it’s drizzling and wet out here but the hurricane we were supposed to be getting never came last night!

2  ) 7.50am  It is mild-The kitchen seemed so stuffy, so I flung open the window to do some cooking.

3  ) 8.00am I prepared the vegetables (picked from our garden yesterday), and steamed them ready to make J’s meal which he has to take to work with him later.

4  ) 8.15am I went to see if Julian was awake and wanted a cup of tea-it appeared not! And AB was not in the mood to budge either!

5  ) 8.20am So I did the little bit of ironing there was to do……

6  )….8.30am And performed surgery on Moo Moo’s face and Duckie’s back!

7  )….8.50am And tidied her toys up, putting her little bit of foraging kibble down there too.

Then I had some ‘me’ time-washed my hair, pottered a bit, had some breakfast and watched a couple of episodes of the Dog Whisperer. At which point the sun started coming out-lovely!

8   ) 11.10am Anna-Bell wandered downstairs, found her chewy bone and jumped up to her favourite place in the sun in the lounge window.

9  ) 12.40pm Plonked my swimming bag in the boot of R2 and went to the club for a dip and a sauna, dropping Julian off at the station on the way as he was working a late shift today.

10  ) 2pm Sat outside in the gusty sunshine at the Club, staring at the empty tennis courts,  and ate my sandwich lunch and drink in peace after my swim. It was really warm today-just so windy!

Then during the afternoon I took AB out  in the car and we went for a mini walk in the park in Ickenham which has lots of nice seats for me to stop and rest on! We saw lots of dogs today, all of which she met and greeted calmly and happily. I am so proud of her new manners that Jo the dog trainer has taught her. The sun was still shining but boy! was it blustery!

11 ) 7.00pm Whilst my dinner was cooking, I quickly watered the vegetables and patio pots. Pointless running the irrigation as everything is pretty wet out there, but my  various tomatoes and beans were wilting!

12  ) 7.25pm A little later than I’d hoped, but still earlier than usual, I had my dinner. It tasted better than it looks-Fish pie, baked beans and a bit of garden in the form of some lettuce leaves.

Hope you’ve enjoyed my diary day, 12 pictures taken on the 12th of the month.

Night, night from us here, and see you next month!

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


Our Wiff Waff Day!

September 5, 2011

…..Do you Wiff Waff, or should I say, Ping Pong?…..

On Saturday we had a fun Family Day to celebrate my Sister’s husband, David’s birthday, and the arrival of their new outdoor Table Tennis Table.

It was a great afternoon, the sun shone and Oliver arranged a proper tournament that Alexander won, and everybody had a go at playing Wiff Waff, well, that is, except AB and Tiger. It seems hilarious that in my Father’s photo collage, AB seems to have appeared on everybody’s laps, except the cats.

Tiger is huge-more Maine Coon than Cat. She slept all afternoon and it was AB who spotted the mouse trotting across the patio and up the grape vine!

I was so stiff the next day-I need paracetamol to get my legs going again. Mum did her back in and Dad was, well, rather wiff-waffed out!

…..In my dear old Grandparents traditional of Family Fun Days, it looks like the Wiff Waff tournament is going to become an annual event!…..