I've seen a few people do this on Facebook - copy the 30 things from below and fill in your own answers. It's quite an interesting way of learning more about people and the way that they deal with their illness.
1. The illness I live with is:
2. I was diagnosed with it in the year:
3. But I had symptoms since:
4. The biggest adjustment I’ve had to make is:
5. Most people assume:
6. The hardest part about mornings are:
7. My favorite medical TV show is:
8. A gadget I couldn’t live without is:
9. The hardest part about nights are:
10. Each day I take __ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I:
12. If I had to choose between an invisible illness or visible I would choose:
13. Regarding working and career:
14. People would be surprised to know:
15. The hardest thing to accept about my new reality has been:
16. Something I never thought I could do with my illness that I did was:
17. The commercials about my illness:
18. Something I really miss doing since I was diagnosed is:
19. It was really hard to have to give up:
20. A new hobby I have taken up since my diagnosis is:
21. If I could have one day of feeling normal again I would:
22. My illness has taught me:
23. Want to know a secret? One thing people say that gets under my skin is:
24. But I love it when people:
25. My favorite motto, scripture, quote that gets me through tough times is:
26. When someone is diagnosed I’d like to tell them:
27. Something that has surprised me about living with an illness is:
28. The nicest thing someone did for me when I wasn’t feeling well was:
29. I’m involved with Invisible Illness Week because:
30. The fact that you read this list makes me feel:
1. The illnesses I live with are: Asthma, Ehlers-Danlos syndrome (with secondary gastroparesis, intestinal dysmotility, and autonomic dysfunction)
2. I was diagnosed with it in the year: 1988 (asthma), 2008 (EDS)
3. But I had symptoms since: I was born
4. The biggest adjustment I’ve had to make is: accepting that there isn’t a pill or surgery that will make things better, but that this is just how things are and I need to learn to live with it
5. Most people assume: that I’m perfectly healthy
6. The hardest part about mornings is: trying to get everything done (get up, shower, take lots of medications + 30 minutes of nebs, do physio exercises, get dressed, style my hair and put on make-up) and still have the energy to go to whatever appointment I have that day
7. My favorite medical TV show is: 24 hours in A&E
8. A gadget I couldn’t live without is: my iPhone – I have so many apps that help me get through the day – sudoku for boring moments, guided imagery for when the pain is bad, music, calendar to track my medical appointments, peak flow diary, food diary, emails, facebook, etc. All in one handy, pocket-sized gadget! Oh, and it makes telephone calls too!
9. The hardest part about nights is: the feeling of being alone. Pain and wheeziness always seem to be worse at night, and it can be very lonely and very scary to be lying awake at 3 am fighting for breath and/or crying with pain
10. Each day I take 43 tablets, 1 inhaler, 2 gels, 1 cream and 15 nebs
11. Regarding alternative treatments I: have had reflexology (lovely!), use aromatherapy oils, am inseparable from my TENS machine, and am thinking about trying acupuncture
12. If I had to choose between an invisible illness or visible I would choose: invisible. Though people find it hard to accept that I’m unwell because I am young, I like to have the choice about whether to share details of my medical conditions or not.
13. Regarding working and career: I have been off work for a number of months while I’ve been in and out of hospital with asthma. I find it frustrating that I can’t even hold down a basic, 9-5, secretarial job because my body isn’t up to it.
14. People would be surprised to know: that I used to waterski competitively
15. The hardest thing to accept about my new reality has been: learning that I can’t be entirely self-sufficient anymore, and that I have to ask for help
16. Something I never thought I could do with my illness that I did was: lots of travellling!
17. The commercials about my illness: are pretty much non-existent
18. Something I really miss doing since I was diagnosed is: being spontaneous – even just going out for the afternoon is like organising a military operation
19. It was really hard to have to give up: wearing heels
20. A new hobby I have taken up since my diagnosis is: knitting
21. If I could have one day of feeling normal again I would: run and jump and dance and take a dog for a long walk along the beach, through fields full of flowers, through shady woods...
22. My illness has taught me: to be gentle with myself and others
23. Want to know a secret? One thing people say that gets under my skin is: “mind over matter – you shouldn’t give in so easily, but should push through the pain/wheezing/etcâ€
24. But I love it when people: accept me just as I am
25. My favorite motto, scripture, quote that gets me through tough times is: “You don’t drown by falling in the water; you drown by staying thereâ€
26. When someone is diagnosed I’d like to tell them: to find out everything they can about their diagnosis and treatment so that they can advocate for themselves, and to ask for help and support when they need it
27. Something that has surprised me about living with an illness is: that I’m not alone – there are so many other young adults out there living with chronic illnesses
28. The nicest thing someone did for me when I wasn’t feeling well was: to remember me, even though I couldn’t go out. The people who brought picnics to be eaten on my bed, who lay on the sofa next to me watching films, who taught me to play backgammon, bridge and cribbage, made jigsaws with me, taught me the rules of cricket (because I was bedbound through the whole of the Ashes 2005, and they thought it would be good for me to get excited about something!), visited me in hospital with card games and fresh food, who sent long chatty emails when I wasn’t well enough to talk on the telephone, and who brought the world inside to me when I couldn’t go out to experience it.
29. I’m involved with Invisible Illness Week because: I want to challenge the notion that people who are diagnosed with a chronic illness can’t live happily ever after
30. The fact that you read this list makes me feel: grateful
2. I was diagnosed with it in the year: 1st time - 1999 2nd and current time - 2009
3. But I had symptoms since: i was born - now with gaps of no need for medication
4. The biggest adjustment I’ve had to make is: dealing with it
5. Most people assume: i am healthy and that there is nothing wrong with me
6. The hardest part about mornings are: getting out of bed
7. My favorite medical TV show is: house m.d
8. A gadget I couldn’t live without is: my phone
9. The hardest part about nights are: getting to sleep
10. Each day I take 2 puffs of seretide 250 morning and night and whatever ventolin is required
11. Regarding alternative treatments I: ?
12. If I had to choose between an invisible illness or visible I would choose: invisible
13. Regarding working and career: i volunteer with disabled children
14. People would be surprised to know: that i have special needs
15. The hardest thing to accept about my new reality has been: i cannot always swim as much as i used to
16. Something I never thought I could do with my illness that I did was: learn to live with it
17. The commercials about my illness: ?
18. Something I really miss doing since I was diagnosed is: being able to swim a lot more
19. It was really hard to have to give up: ?
20. A new hobby I have taken up since my diagnosis is: ?
21. If I could have one day of feeling normal again I would: ?
22. My illness has taught me: that everyone has barriers in life
23. Want to know a secret? One thing people say that gets under my skin is: ?
24. But I love it when people: accept me for who i am and not who they want me to be
25. My favorite motto, scripture, quote that gets me through tough times is: ?
26. When someone is diagnosed I’d like to tell them: dont give up its not worth it
27. Something that has surprised me about living with an illness is: you can still get on with life the way you want to and you know when to stop
28. The nicest thing someone did for me when I wasn’t feeling well was: just help me with what i needed help with
29. I’m involved with Invisible Illness Week because: i want to be
30. The fact that you read this list makes me feel: happy
1. The illness I live with is: Asthma
2. I was diagnosed with it in the year: 1989
3. But I had symptoms since: I was born
4. The biggest adjustment I’ve had to make is: Learning to say no, and stop, when really I just want to keep going like everyone else
5. Most people assume: Asthma does not affect my life!
6. The hardest part about mornings are: Getting out of bed after having slept badly because you woke up in the night wheezing, took your inhaler and then set about shaking for 3 hours
7. My favorite medical TV show is: Grey's Anatomy
8. A gadget I couldn’t live without is: My iPhone. I realise this sounds pathetic, but when I am in bed because I can't go out anywhere, I still feel connected to my friends and family, and the outside world.
9. The hardest part about nights are: getting nowhere near enough sleep because my asthma is bad
10. Each day I take __ pills & vitamins: 2 pills, 2 inhalers and 3 vitamins
11. Regarding alternative treatments I: wish I believed that they work. Genuine belief in something is a placebo in itself.
12. If I had to choose between an invisible illness or visible I would choose: I don't honestly know. I hate it that people assume that asthma isn't a part of my life, but when people see me having an attack I just feel mortified. I could imagine that visible illness probably feels a bit like that all the time.
13. Regarding working and career: I am about to start a PhD, so hope I have chosen a profession that accepts me. And that isn't too strenuous, particularly physically!
14. People would be surprised to know: that when you are an asthmatic, you can only use certain products. I can only use one type of washing liquid, one deoderant etc as others make me wheeze.
15. The hardest thing to accept about my new reality has been: What is a new reality? I've always had asthma, and grown through several different stages.
16. Something I never thought I could do with my illness that I did was: travel as far and as widely as I want to.
17. The commercials about my illness: ?
18. Something I really miss doing since I was diagnosed is: Again, not really applicable - but one thing I wish I could do is exercise and run around more. I never took part in sports, and never even learned to swim - I'm starting to learn now, though, so I suppose late is better than never.
19. It was really hard to have to give up: See above.
20. A new hobby I have taken up since my diagnosis is: I have always been an inside person - reading is my favourite hobby, which has definitely fed into my education and career plans. But I've recently got really into cake making and decorating, and am starting my own business. It's a great thing to do and really takes my mind off everything else.
21. If I could have one day of feeling normal again I would: run, jump and play around with my nephew without having to use my inhaler once.
22. My illness has taught me: that patience is a virtue. It takes a long time to build yourself up, and that can be brought down in less than a minute. Take things slow and don't undo the good work.
23. Want to know a secret? One thing people say that gets under my skin is: That asthma and smoking induced COPD are the same thing. We can't help having asthma - but you have a choice whether you smoke or not. Having had asthma since I was born, I find it hard to accept that I have to wait for treatment because someone who has smoked 40 a day and developed a cough is getting seen as a priority that day.
24. But I love it when people: enjoy my company. and my cakes!
25. My favorite motto, scripture, quote that gets me through tough times is: ""tell me who loves you, and I'll tell you who you are"" - Antoine de Saint-Exupery. I can always count on the people who love me, and if I'm a reflection of them, then I'm amazing.
26. When someone is diagnosed I’d like to tell them: allow yourself time to rest. It's hard, physically and emotionally, to deal with having asthma. Oh, and always appreciate those who love you. You need them.
27. Something that has surprised me about living with an illness is: how strong and resilient you become. Half the crap we deal with on a daily basis would push someone over the edge - and that's excluding all of the normal life issues we have to deal with.
28. The nicest thing someone did for me when I wasn’t feeling well was: sat with me quietly.
29. I’m involved with Invisible Illness Week because: LET'S GET VISIBLE! We can be seen even if our asthma can't.
30. The fact that you read this list makes me feel: proud. well done!
1. The illness I live with is: Asthma and acid reflux
2. I was diagnosed with it in the year: 2010 (asthma) 2005 (reflux)
3. But I had symptoms since: childhood (asthma) 2000 (reflux)
4. The biggest adjustment I’ve had to make is: remembering what sets me off on an attack of either illness
5. Most people assume: The drugs make it all better
6. The hardest part about mornings are: getting up after a disturbed night and remembering to take my drugs when I am half asleep.
7. My favorite medical TV show is: Emergency Bikers, (The Hotel Inspector, not medical but it makes me laugh)
8. A gadget I couldn’t live without is: the camera on my mobile phone
9. The hardest part about nights are: getting to sleep in under an hour
10. Each day I take __ pills & vitamins. 1 gastric inhibitor, varying amounts of anitihistamine, 2 x inhalers twice a day (was reliever and brown preventer, now just changed to purple preventer - Seretide)
11. Regarding alternative treatments I: haven't tried any yet
12. If I had to choose between an invisible illness or visible I would choose: neither
13. Regarding working and career: OK at the moment
14. People would be surprised to know: that I always feel I should be able to do more physically but I am always tired
15. The hardest thing to accept about my new reality has been: my limitations in exercise and food
16. Something I never thought I could do with my illness that I did was: keep on horse riding
17. The commercials about my illness: haven't seen any apart from for Gaviscon which doesn't help at all
18. Something I really miss doing since I was diagnosed is: eating whatever I want and doing whatever I want
19. It was really hard to have to give up: thinking I would ever be able to be fit enough to run
20. A new hobby I have taken up since my diagnosis is: Gentle exercise on the Wii Fit
21. If I could have one day of feeling normal again I would: Go on a really long walk up a big hill
22. My illness has taught me: to accept my limitations
23. Want to know a secret? One thing people say that gets under my skin is: complaining without being prepared to take action
24. But I love it when people: are polite, considerate and friendly
25. My favorite motto, scripture, quote that gets me through tough times is: Growing old is compulsory, growing up isn't
26. When someone is diagnosed I’d like to tell them: to stay strong
27. Something that has surprised me about living with an illness is: I can sometimes do more than I think
28. The nicest thing someone did for me when I wasn’t feeling well was: Buy me a bunch of flowers and send a card to cheer me up
29. I’m involved with Invisible Illness Week because: its the right thing to do
30. The fact that you read this list makes me feel: happy that you have taken the time to read about me
1. The illness I live with is: Asthma
2. I was diagnosed with it in the year: 1987
3. But I had symptoms since: All my life
4. The biggest adjustment I’ve had to make is: Knowing my limitations
5. Most people assume: I am just unfit
6. The hardest part about mornings are: Getting up at 5am to go to work after a bad night
7. My favorite medical TV show is: Scrubs
8. A gadget I couldn’t live without is: Iphone 4 & Ipad 2
9. The hardest part about nights are: Sleeping
10. Each day I take __ pills & vitamins. (No comments, please): Too Many
11. Regarding alternative treatments I: Flutter pipe
12. If I had to choose between an invisible illness or visible I would choose: Neither
13. Regarding working and career: Problems due to my attendance record
14. People would be surprised to know: I know my asthma better than them
15. The hardest thing to accept about my new reality has been: Planning ahead is not easy
16. Something I never thought I could do with my illness that I did was: Make so many new mates
17. The commercials about my illness: What commercials ?
18. Something I really miss doing since I was diagnosed is: Not always being able to keep up with my mates
19. It was really hard to have to give up: I have tried to not give anything up
20. A new hobby I have taken up since my diagnosis is: Twitter
21. If I could have one day of feeling normal again I would: Play football
22. My illness has taught me: My Employers don't care less about me
23. Want to know a secret? One thing people say that gets under my skin is: Other people thinking that they know more about my asthma and my limitations than what I do
24. But I love it when people: Treat me normally
25. My favorite motto, scripture, quote that gets me through tough times is: Sleep is for wimps
26. When someone is diagnosed I’d like to tell them: Its not the end of the world
27. Something that has surprised me about living with an illness is:
28. The nicest thing someone did for me when I wasn’t feeling well was: Somebody that I had never met taking time out to speak to me and my family offering support and advice.
29. I’m involved with Invisible Illness Week because:
30. The fact that you read this list makes me feel: It was worth writing it
1. The illness I live with is: Brittle Asthma, Chronic Reflux and Osteoporosis
2. I was diagnosed with it in the year: Asthma - 2005, Reflux and Osteo - 2010
3. But I had symptoms since: Asthma - 10.
4. The biggest adjustment I’ve had to make is: Taking a year out of school and giving up my uni course of nursing before I even started
5. Most people assume: I'll grow out of asthma/it is cured by a blue inhaler and I'm fat because I'm lazy
6. The hardest part about mornings are: Getting out of bed and breathing.
7. My favorite medical TV show is: ER or House.
8. A gadget I couldn’t live without is: My iPhone and neb
9. The hardest part about nights are: staying asleep
10. Each day I take 36 pills, 8 nebulisers, 3 liquid medicines, a nasal spray and 15mins of physio twice a day.
11. Regarding alternative treatments I: Have tried a few and am sceptic as to how well they work
12. If I had to choose between an invisible illness or visible I would choose: Invisible.
13. Regarding working and career: I hope one day I can hold down a full time job, but until then I'm going to keep on trying!
14. People would be surprised to know: I'm a qualified SCUBA instructor
15. The hardest thing to accept about my new reality has been: I've had to give up so much of what I love doing, i.e sports
16. Something I never thought I could do with my illness that I did was: Speak at the Houses of Parliament
17. The commercials about my illness: Are all directed towards old people. Young people get osteoporosis too!
18. Something I really miss doing since I was diagnosed is: SCUBA diving
19. It was really hard to have to give up: Sports
20. A new hobby I have taken up since my diagnosis is: Public Speaking
21. If I could have one day of feeling normal again I would: go scuba diving and take my boyfriend
22. My illness has taught me: That I can't just give up and let things get me down.
23. Want to know a secret? One thing people say that gets under my skin is: ""Mind over matter, you'll get better if you think you will""
24. But I love it when people: Realise that I can't always keep up with them but don't make a big deal out of it
25. My favorite motto, scripture, quote that gets me through tough times is: ""I've got to keep breathing, it will be my worst business mistake if I don't."" Steve Martin
26. When someone is diagnosed I’d like to tell them: Keep your chin up, Asthma isn't a death sentance.
27. Something that has surprised me about living with an illness is: How many friends I've made and that there is always someone there to talk to
28. The nicest thing someone did for me when I wasn’t feeling well was: Sat with me through the night and kept me smiling.
29. I’m involved with Invisible Illness Week because: I know how it feels to have people look at you differently because you're different.
30. The fact that you read this list makes me feel: Curious as to how you feel about your condition
.
1. The illness I live with is:asthma
2. I was diagnosed with it in the year:aged 3,became difficult in2009
3. But I had symptoms since:always
4. The biggest adjustment I’ve had to make is:accepting my limitations
5. Most people assume:that its easily treated,and temporary
6. The hardest part about mornings are:any kind of rushing
7. My favorite medical TV show is:can't bear them!
8. A gadget I couldn’t live without is:computer
9. The hardest part about nights are:not being able to sleep,usually down to medication
10. Each day I take __ pills & vitamins)7 pills,2 inhalers,nebuliser,monthly injections,and vitamins
11. Regarding alternative treatments I:i love reiki and tai chi-have tried accupuncture
12. If I had to choose between an invisible illness or visible I would choose:invisble
13. Regarding working and career:i am foster parent
14. People would be surprised to know:i feel angry and resentful about my health most of the time
15. The hardest thing to accept about my new reality has been:losing the freedom to do what i want when i want,it affects everything,and the way it affects my family
16. Something I never thought I could do with my illness that I did was:climb to the top of st michaels mount in cornwall,neb in bag!
17. The commercials about my illness:
18. Something I really miss doing since I was diagnosed is:going for really long walks
19. It was really hard to have to give up:trying hard not to give up freedom and controll of my life
20. A new hobby I have taken up since my diagnosis is:the computer-looking for something creative
21. If I could have one day of feeling normal again I would:fill every moment-with energy and enthusiasm
22. My illness has taught me:to value the simple things in life,even more
23. Want to know a secret? One thing people say that gets under my skin is:are you under stress?,not being able to breathe does that!
24. But I love it when people:show that they care
25. My favorite motto, scripture, quote that gets me through tough times is:prayer
26. When someone is diagnosed I’d like to tell them:take it esy on yourself
27. Something that has surprised me about living with an illness is:how lonely it is
28. The nicest thing someone did for me when I wasn’t feeling well was:a dear freind came to stay after i came out of hospital,not to tke care of house or kids,just to be supportive and company
29. I’m involved with Invisible Illness Week because:I have been interested to read other peoples experiances
30. The fact that you read this list makes me feel: )
Thanks to everyone who's replied so far. I've been really interested by how many similarities (and yet also how many differences) there are in the way that we all live with our illness(es)...
1. The illness I live with is: Asthma
2. I was diagnosed with it in the year: Can’t remember 1999 maybe?
3. But I had symptoms since: I can remember... not sure
4. The biggest adjustment I’ve had to make is: Accepting that I am unwell, agreeing to rest and take time off to get better and letting people support me
5. Most people assume: that GP’s are Ventolin happy and prescribe inhalers to everyone, that asthma is a fake illness and it’s not a big deal, that I’m just unfit and ‘obviously have a smokers cough’ and more annoyingly that I’m obviously just anxious/stressed and having a panic attack so if I ‘just breathe’ I will be okay > <
6. The hardest part about mornings are: Getting out of bed after a bad night’s sleep, feeling exhausted and never rested, often coughing, wheezy and breathless and then smiling and trying to look well when I turn up to work
7. My favorite medical TV show is: Scrubs
8. A gadget I couldn’t live without is: Laptop/Internet
9. The hardest part about nights are: Poor sleep, coughing
10. Each day I take pills & vitamins: Inhalers, Antihistamines, Nasal Spray, eye drops Eczema creams blah blah blah
11. Regarding alternative treatments I: have a slight addiction to the hydrotherapy pool, I am a fan of natural medicines and also use a lot of aromatherapy oils (that don’t trigger me of course) –I also love Reiki and other complimentary therapies
12. If I had to choose between an invisible illness or visible I would choose: Neither
13. Regarding working and career: I work in Mental Health/Psychology and I love helping people
14. People would be surprised to know: that I believe in reincarnation
15. The hardest thing to accept about my new reality has been: Making sacrifices, giving up things that are important
16. Something I never thought I could do with my illness that I did was: pass my degree after a constant string of chest infections
17. The commercials about my illness: What commercials?
18. Something I really miss doing since I was diagnosed is: playing football and other sports without struggling
19. It was really hard to have to give up: My pride
20. A new hobby I have taken up since my diagnosis is: Campaigning/Raising Awareness
21. If I could have one day of feeling normal again I would: Run a marathon/Compete in a Triathalon
22. My illness has taught me: To live a life of gratitude, to appreciate everyone and everything I have
23. Want to know a secret? One thing people say that gets under my skin is: Telling me what my asthma triggers are and how it affects me when they know so little about me and what makes me unwell... When I get told my asthma is bad because I am stressed (as opposed to the chest infection or allergic reaction I have just had)
24. But I love it when people: Just accept me for who I am and that living with asthma is not always easy and that maybe I’m having a bad day and need to do less, or go slower or get more help and that’s okay
25. My favorite motto, scripture, quote that gets me through tough times is: To love. To be loved. To never forget your own insignificance. To never get used to the unspeakable violence and the vulgar disparity of life around you. To seek joy in the saddest places. To pursue beauty to its lair. To never simplify what is complicated or complicate what is simple. To respect strength, never power. Above all, to watch. To try and understand. To never look away. And never, never, to forget. Arundhati Roy
26. When someone is diagnosed I’d like to tell them: That the sky is blue, the grass is green and the sun will still shine tomorrow... It’s okay – You are not alone, It’s okay to be scared and it is possible to manage asthma. Don’t be scared to make sacrifices, don’t cling too tightly to your pride; sometimes this is best given to the people who care about you most. Tell people how much you love them, practice gratitude and smile.
27. Something that has surprised me about living with an illness is: how resilient we are as humans
28. The nicest thing someone did for me when I wasn’t feeling well was: Travel a long way to pick me up and take me home to look after me. Thanks Mom and Dad x
29. I’m involved with Invisible Illness Week because: If we all understood a little more about each other then surely there is no other option but for the world to become a better place
30. The fact that you read this list makes me feel: Heard, Valued and Respected
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Does anyone have any advice about helping someone to come to terms with an asthma diagnosis?
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Living with severe asthma
