Invisible Ilness Awareness Week ( 8th - 14th September 2014 )
To mark this, I've below answered 30 questions on my condition to hopefully help raise awareness and better understanding. Asthma kills.
1. The illness I live with is: Asthma - Asthma is a condition that affects the airways - the small tubes that carry air in and out of the lungs. When a person with asthma comes into contact with an asthma trigger, the muscles around the walls of the airways tighten and the airways become narrower. The lining of the airways becomes red and swollen and often sticky mucus or phlegm is produced. All these reactions cause the airways to become narrower and irritated - leading to the symptoms of asthma.
2. I was diagnosed with it in the year: 1998 (aged 6)
3. But I had symptoms since: 1994 (aged 2)
4. The biggest adjustment I’ve had to make is: Learning to accept what I can and can't do, when enough is enough. Sometimes I've the fight but no strength.
5. Most people assume: "That it's just Asthma" - Asthma kills 3 people everyday. Many of these deaths could of been prevented, see my previous post on the NRAD.
6. The hardest part about mornings are: Getting up, when you've been up all night symptomatic, you just want to sleeps and breathe. Not much to ask surely!
7. My favorite medical TV show is: Casualty!!!
8. A gadget I couldn’t live without is: I'm not a massive techno gadget person, I could live without them but that said my kindle is amazing I can read anywhere and everywhere, always got a book to hand. Apps I can download to help with managing my condition and medication.
9. The hardest part about nights are: Lying down increases my Shortness Of Breath (SOB) so even getting in bed creates problems when I'm having a flareup. There's also being woken by symptoms and not getting deserved sleep. -I love sleep!
10. Each day I take : Inhalers and tablets. ( I won't turn this into a Med essay)
11. Regarding alternative treatments I: Haven't really tried any, theres so much conflicting opinion and no proven results as far as I'm aware.
12. If I had to choose between an invisible illness or visible I would choose: Invisible.
13. Regarding working and career: I had to make adjustments in my last job as I was quite physical, my current job doesn't affect my condition. There are careers out there if I wanted to peruse I wouldn't be able to because of the effects of my condition, there are also jobs who simply won't allow someone with my condition.
14. People would be surprised to know: Not everyone with asthma wheezes -yes it's true! Sometimes it can be very dangerous doctors who don't hear a wheeze can assume your not in danger yet there can be so little air entry there is no sound and others just don't wheeze.
15. The hardest thing to accept about my illness is: Accepting what someone people see as normal simple life tasks can I fact be very difficult. On a bad day stairs can be a nightmare.
16. Something I never thought I could do with my illness that I did was: Tricky one I'm not sure I've ever thought about this I have the attitude that I will do everything I can, that I want to do and it's safe to do, it might just take me longer and need adapting.
17. The commercials/adverts about my illness: There isn't any, I feel this lack of awareness leads to a negative stereotype.
18. Something I really miss doing since I was diagnosed is: I've had it so long I've not had a chance to miss anything really, but if i had the chance to be a normal kid I'd love to run round the playground and take part in games & PE etc properly without people judging me for always sitting out in class. I'd also love to go back in time and tell the bully's that it's not my fault, and what happened as a result of there bullying was dangerous and could of been the end.
19. It was really hard to have to give up; Dairy , this really upsets my chest but as you will know from my posts chocolate Its my nemesis , I also love ice cream but it hates me. Still the world of free from and substitutes has come a long way. Only real chocolate solves cravings for chocolate though!
20. A new hobby I have taken up since my diagnosis is: As I've previously mentioned I've lived with asthma most of my life , so I guess here where I say if I wasn't me I wouldn't do the things in life I've done.
21. If I could have one day of feeling normal again I would: Love to run, seriously what I'd give to be able to run! Crazy right??!!
22. My illness has taught me: To grab life by the the horns and enjoy every minute, life is precious and no one can't anticipate where it's going, make memories and do everything you can, you want.
23. Want to know a secret? It's not secret by now but It makes me very cross when people say it's just asthma, this is what I thought some many years ago , ITS NOT.
24. But I love it when people: Are considerate, take my condition seriously remember my triggers and make me smile when I'm down.
25. My favorite motto, scripture, quote that gets me through tough times is: "What doesn't kill you makes you stronger" (song , Kelly Clarkson) meaning everyday you fight more for the next.
26. When someone is diagnosed I’d like to tell them: It will be hard, but it will be ok. I tell them that they know their bodies best, they need to be their own advocate fight for what you need, fight for what you deserve.
27. Something that has surprised me about living with an illness is: Other peoples ignorance.
28. The nicest thing someone did for me when I wasn’t feeling well was: To supply me with a goody bag of feel good items! Very sweet!
29. I’m involved with Invisible Illness Awarness week because: it promotes awareness and support for people living with illness. Considering there are 5.4 million people in the UK with asthma, it is not portrayed well, there as so many different degrees of severity, yet "It's just Asthma"
30. The fact that you read this list makes me feel: like I've achieved something, and hopefully you'll go away knowing something you didn't about asthma when you started.