Invisible illness week – 30 questions

This week is INVISIBLE ILLNESS WEEK. I’ve always read people’s 30 questions about their invisible illness/illnesses and since I’ve got a blog I thought I’d join in this year.

1. The illness I live with is:
Asthma, chlorine allergy, chronic costochondritis and some sort of undiagnosed conditions that is attacking my joints, my doctors think it may be autoimmune hence my seeing a rheumatologist. I also have a left multicystic dysplastic kidney (my kidney is missing because of this condition)

2. I was diagnosed with it in the year:
2012, 2013, 2011, as of yet no diagnosis for the joint issues and birth.

3. But I had symptoms since:
Asthma issues since 2008, chlorine allergy causing allergic reactions since 2011/12, costochondritis problems since 2011, joint issues since 2007/08 and I’ve never had symptoms because of my kidney issue unless you count some pretty bad kidney infections.

4. The biggest adjustment I’ve had to make is:
I realise that there are things I can’t do right at that moment especially when I am flaring, it’s just something you have to accept BUT I can usually do things eventually, it’s just a waiting game.

5. Most people assume:
Kids DON’T get arthritis (the doctors an physios think I may have Juvenile arthritis). Asthma is JUST a blue inhaler, not a medical conditions that can be life threatening. And nobody has really heard of someone being allergic to chlorine – I’m just that unusual. Oh I almost forgot, a lot of people think I smoke because of my “smokers” cough which is actually an asthma cough.

6. The hardest part about mornings are:
Getting up! That must be one of the hardest things I do every day! Especially when your joints don’t want to cooperate.

7. My favorite medical TV show is:
Greys Anatomy although I don’t get to watch it that often.

8. A gadget I couldn’t live without is:
The microwave – I live on heat packs and I use a microwave to heat them up

9. The hardest part about nights are:
Getting to sleep. I am tired all day but when I do get into bed I really struggle to get to sleep, especially because I really start to notice my joints more when it is quiet.

10. Each day I take __ pills & vitamins:
I take 2 inhalers every day, well some days I can get away without any ventolin but to keep it simple I’ll say I take 2 inhalers a day. I am also supposed to take an slow release NSAID every evening and 2 vitamin tablets a day both of which I don’t take. And over the counter antihistamines when I need it, since I haven’t gotten around to asking my nurse about a prescription antihistamine.

11. Regarding alternative treatments:
I don’t really believe that alternative treatments can treat the underlying cause for symptoms, yes they may be beneficial in treating the symptoms but I would really prefer to go with conventional treatments.

12. If I had to choose between an invisible illness or visible I would choose:

13. Regarding working and career:
Most people at work don’t know very much about my medical conditions. Working at a swimming pool with asthma and a chlorine allergy is difficult, a few of my colleagues know about the asthma, I try to keep quiet about the allergy side of things despite the lovely rash I come out in. And nobody knows about the one kidney issue or the joint problems or the costochondritis.

14. People would be surprised to know:
I am in pain the majority of the time and I am very good at hiding it. The fact that I have these medical conditions. And that I have a pretty high pain tolerance?

15. The hardest thing to accept about my new reality has been:
The possibility of a diagnosis for my joint condition and subsequent treatment… The treatment of JA actually terrifies me.

16. Something I never thought I could do with my illness that I did was:
Teach swimming, and although it is hard and I have to pump myself full of ventolin and antihistamines, and deal with the asthma/allergic reactions, I still teach.

17. The commercials about my illness:
I’ve never seen any, perks of living in the UK with the NHS.

18. Something I really miss doing since I was diagnosed is:
Not worrying about where my inhaler is or how bad my attack/allergic reaction will be when I go to work.

19. It was really hard to have to give up:
I haven’t really given up anything, I can’t go swimming recreationally now, it’s hard enough to deal with my body when I am teaching and I don’t see the point of putting my body under extra pressure to get into a swimming pool more often. My asthma nurse would prefer me not to swim at all but we have conflicting opinions about that.

20. A new hobby I have taken up since my diagnosis is:
Blogging! Twitter (may be more of an addiction) and meeting/speaking to people all over the world about chronic illnesses!

21. If I could have one day of feeling normal again I would:
Haha, don’t make me laugh, everyone who knows me will agree that I have never been normal.

22. My illness has taught me:
To accept when I can’t do something. I am also very aware of other people’s medical conditions, when they tell me about them, and I always learn what I should do for them in an emergency, just in case.

23. Want to know a secret? One thing people say that gets under my skin is:
“Kids don’t get arthritis” really annoys me but also when people say that “it’s JUST asthma”

24. But I love it when people:
Ask me questions about medical conditions, even if i don’t have that condition, because it shows they are willing to learn! Feel free to ask me why this and what’s that 🙂

25. My favourite motto, scripture, quote that gets me through tough times is:
“We are the strong ones” that applies to anyone with any sort of illness.

26. When someone is diagnosed I’d like to tell them:
Don’t get hung up about your diagnosis! Just get on with life! Blog your feeling out, that’s what I do. But if you are really struggling to come to terms with your condition please speak to someone about it! Even feel free to contact me if you want (all the details are on the Contact MyLungsMyLife page). Also reach out to the chronic illness community, there are loads of us and we are all very nice 🙂

27. Something that has surprised me about living with an illness is:
How many people are out there to support you through the illness and to give you advice on coping has surprised me so much! It’s great!

28. The nicest thing someone did for me when I wasn’t feeling well was:
(This is not entirely related to any of the conditions I have listed above but from time to time i have issues with my blood pressure and this is something my friend did for me during one of these times). My friend went a mile out of her way to buy me the biggest bar of chocolate I had ever seen after I had an issue with my blood pressure dropping to the point of me not being able to walk a few feet into college and having to sit on a wall outside till the bus came to take me home.

29. I’m involved with Invisible Illness Week because:
Not many people know about invisible illnesses because they are invisible, so this might help some of my invisible illnesses get a little more awareness so they are a little less ignored.

30. The fact that you read this list makes me feel:
Happy that you would like to read how I feel about certain issues. Thank you readers! I hope that you have learnt something from reading this list!


3 thoughts on “Invisible illness week – 30 questions

  1. Thank you! I’m 68, already suffering with psoriatic arthritis and asthma. Three months ago I took Levaquin and got Fluoride poisoning which ramped up the circus of miscellaneous new ailments including Costochondritis. I sympathize with your invisible ailments and wish you well.

    1. Sorry that your PsA and Asthma are bothering you, and I’m sorry that the medications caused fluoride poisoning! I hope you feel better 🙂

  2. Hey not sure if you’ve seen the rhumatologist, hopefully they thought what I did after reading your symptoms! Have you looked up Elhers -Danlos a not very well known invisible illness that effects joints and any connective tissue/ soft tissue. There are 7 varieties so varying symptoms across the boards. Looks at hypermobile eds and classical. The chest problems most inflammation of the chest ligaments(connective) arthritis , but also osteoarthritis are signs. Any dislocation or subluxation of the joints. I take naproxen , codeine, amitryptaline for the pain. Iron, and now also an blue inhaler …

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