Invisible Illness Week


I’m being a copycat, I have come across Invisible Illness Week blog entries this week and decided to do my own too. I’ve had asthma since I was about 3 years old, for 17 years I have lived with the condition which has so many misconceptions, some of which could cost someone with asthma their life in an extreme circumstance.

For example, asthma attacks are not panic attacks, they are not interchangeable terms, yes some people with asthma do have panic attacks, but they are not the same thing, giving someone who is having an asthma attack a brown paper bag will not make them better infact it could make them a lot worse; this is because when a severe asthma attack takes place

the carbon dioxide levels rise so by giving someone who is having an asthma attack a paper bag this could make them worse as they are breathing in more Carbon Dioxide whereas when a person is having a panic attack their carbon dioxide levels decrease so a paper bag helps them. Sorry for that little rant there, when I was enrolling for college a few weeks back the student support services staff seemed to think that asthma and panic attacks are the same thing and told me to use my nebuliser whenever I feel ‘panicky’. This was a bit annoying, as I don’t have panic attacks and a nebuliser isn’t for panic attacks.

Having an invisible condition can be hard sometimes especially when people don’t understand the reason why it might take you longer to do some things, one of the biggest being the stopping/starting of my A Levels and beginning university after everyone else my age. A lot of people think an asthma attack can be fixed with the infamous magic blue inhaler, unfortunately it is doesn’t always work and people don’t understand why someone with asthma might need to be on various intravenous treatments (indeed when I was on a children’s ward a few years back a little boy’s mum had a slight dispute with me stating that her son has asthma and he got better with a blue inhaler why did I need all the IVs, oxygen etc? and I said it was severe asthma attack and she said that it couldn’t be because asthma isn’t serious its just a childhood annoyance). When I’m feeling bad all I want to do is hide away and neb so that I can feel better and be like everyone else, so that I can get on with the things I want to do. I don’t want asthma to stop me.

30 Things About My Invisible Illness that you May Not Know:

1. The illness I live with is: Asthma

2. I was diagnosed with it: hospitalised with an asthma attack at the age of 3 therefore I count it from then on so -1992.
3. But I had symptoms since: ‘infancy’ according to my hospital notes, I don’t really remember before the age of 3.

4. The biggest adjustment I’ve had to make is: accepting my asthma has become more severe and being on more medication including home nebs.
5. Most people assume: As I posted above asthma and panic attacks are the same thing or that the magic blue inhaler will make any asthma attack better.
6. The hardest part about mornings are: Being short of breath and wheezy when I wake up.

7. My favorite medical TV show is: I like several; Scrubs, Casualty and Holby City.
8. A gadget I couldn’t live without is: Nebuliser.

9. The hardest part about nights are: Waking up repeatedly because of being symptomatic and then trying to go back to sleep after having inhaler/nebs.
10. Each day I take 14 pills (on average), 6+ nebs, 2 inhalers and 1 spray for my invisible condition, not including my ‘visible’ condition – eczema.
11. Regarding alternative treatments: I don’t think they work, however if they work for you that is brilliant.

12. If I had to choose between an invisible illness or visible I would choose: Definitely invisible.
13. Regarding working and career: I am determined to finish my A Levels and hopefully study Medicine to work as a doctor whatever asthma or anything else throws my way.
14. People would be surprised to know: I get through at least 4 blue inhalers alone per month.

15. The hardest thing to accept about my new reality has been: Most people don’t understand how it feels, either people expect you not to be able to do things or they don’t accommodate for what you can do.
16. Something I never thought I could do with my illness that I did was: I do anything I want to do, asthma is not a reason to not do something, there are ways around it if needs be.
17. The TV shows about my illness: are funny, annoying and sometimes slightly infuriating.

18. Something I really miss doing since I was diagnosed is: I don’t know any different, this is how things have always been.
19. It was really hard to have to give up: my A Levels the first time around.

20. A new hobby I have taken up since my diagnosis is: Being a member of Asthma UK’s Youth Forum.

21. If I could have one day of feeling normal again I would: Run around lots and do star jumps!

22. My illness has taught me: You don’t know what you can or can’t do unless you try.
23. Want to know a secret? I have met some amazing people through my condition, if it was the difference between having asthma + these friends and the opposite, I would keep my friends and asthma. Friendship is one of the most important things in the world.

24. But I love it when people: wonder where *that* whistling sound is coming from.

25. My favorite motto, scripture, quote that gets me through tough times is: Look for the rainbow in every storm

26. When someone is diagnosed I’d like to tell them: It won’t always be like this, for most people it can improve with the right treatment.

.27. Something that has surprised me about living with an illness is: that people can be dismissive of a condition if it is common, just because an illness is common it doesn’t make it any less debilitating.
28. The nicest thing someone did for me when I wasn’t feeling well was: Being there for me.
29. I’m involved with Invisible Illness Week because: invisible illnesses need more awareness and I hope doing this might help towards that.
30. The fact that you read this list makes me feel: happy/content.

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at

http://invisibleillness.com/

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