30 Questions about my illness.

1. The illness I live with is:

I have severe steroid dependant asthma, with lots of allergies which cause problems all over my body, not just in my lungs, such as eczema, rhinitis and all those annoying hay fever symptoms! My lung function is also effected by the early signs of Bronchiectisis, caused by frequent chest infects and lots of bad attacks. Because of my breathing problems I am on steroids long term which have caused a whole host of other illnesses such as diabetes, cushing's syndrome, muscular atrophy, anaemia, GORD and osteopenia. I also have depression, which kind of isn't much of a surprise, but I do my best not to let it get to me and to make the most of everything I have :)

2. I was diagnosed with it in the year:

I've had asthma since I was 8, so about 1999, but it started to get a lot worse when I hit my teens. By 2010 I was in and out of hospital, and over the next few years my admissions gradually increased until I had reached the point that I was in hospital for the majority of the time. By 2011 most of the problems with steroid related side effects had begun, and I was diagnosed with diabetes - others have gradually developed and been diagnosed since.

3. But I had symptoms since:

I was diagnosed with asthma pretty soon after the symptoms first began, but when I started to become severe it took a while for them to formally diagnose it as severe or brittle. I struggled a lot with some out patient consultants who couldn't believe that my condition had got worse quite so rapidly - which led to some saying I wasn't taking my medicines properly and trying to make out that I was a loon! Thankfully the inpatient consultants have never doubted me, as they have seen me unwell and have been the ones that have dealt with me when I was on my way to ITU - is it even possible to be that good an actress?! The only one that there was a big gap between onset and diagnosis was the muscular atrophy as they were unsure of what was causing it and if the pain was caused by something like fibromyalgia.

4. The biggest adjustment I’ve had to make is:

Learning to accept that not everything can be fixed, and that although I don't have to give up I do have to accept my limitations. I guess I've also had to learn to pace myself and to be kind to myself when I can't do all the things I want to or think I should do. I have also had to adjust to what other people may think of me - there is such a resentment towards those who have what others class as a minor illness and live on disability allowances... People don't get that asthma can be so bad that it can make you unable to work. Their has also been a massive change in my physical appearance due to the steroids, which has been very hard to deal with.

5. Most people assume:

That there's not much wrong with me because its 'only' asthma after all, and that I am just lazy and making a big deal out of nothing. People also assume that because I can do things one day, I can always do them, without taking into account how much it takes out of me and how much I will pay for it later. Just because they can't see what's going on they assume its not there... I guess I'm partly to blame though, cause I do often push myself for a few days or so and then end up crashing in a big wheezy puddle! You get judged for not trying to do enough, yet when you do try they say you can do it so there is nothing wrong with you!

6. The hardest part about mornings are:

Just waking up and sitting up can be hard, cause my muscles hurt a lot and are generally worse in the morning as I have been laying still all night. I also struggle because over night mucus develops in my airways, and then I have to clear it so that I can breathe properly! I could easily stay in bed all day and go back to sleep - but have to get up and do my best to eat (because of my diabetes) and get washed and dressed. I also have to do all my medications and treatments which can easily take an hour if I don't rush them. Sometimes I can go a fair few days without doing them regularly, but I normally end up 'paying for it' pretty badly quite soon after.

7. My favourite medical TV show is:

Greys Anatomy - I know, what a looser. I think its all the sordid affairs, crazy patients and random giggles.

8. A gadget I couldn’t live without is:

I love my iPhone. It keeps me sane and gives me something to do if I am bored and trying to pass time! I also have lots of apps which I can use to keep track of my life and health - its like carrying around books, diary's, calculators, peak flow diary's, medical schedules and the like all in one!

9. The hardest part about nights are:

The drop in my lung function and worsening of my asthma. Whenever I'm admitted its always at night, which is generally when I have very severe attacks.

10. Everyday I take...?

Between 40-50 tablets if I'm well, more if I'm unwell. I also have four types of nebuliser which I have four times a day, as well as insulin, physio and various inhalers. 

11. Regarding alternative treatments I?

If it works for you and gives you some comfort then go for it, just remember it isn't for everyone and they deserve the right to their own opinion. I personally don't see how eating crushed fennel seeds and sitting naked in a bath of newts during a full moon will help.

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

Invisible. I like the fact that I can choose who knows about my illness, it stops me from seen as 'The sick girl' and let's me be seen as 'Kirsty'. It's not because I don't want people to know, but because I want to be able to tell them on my own terms and in my own way. I expect that if I had a visible illness I would develop a different way of thinking about it though and I do not believe that anyone should ever feel like they should be ashamed of a visible illness.

13. Regarding working and career:

I know that because of my health holding down a full time job will be very hard. I don't want to just sit around though, so I'm doing a degree and trying to create a better future for myself. I hope that one day I will be able to work, I haven't always been this sick and i wont always, so I need to prepare myself so that I have a chance to have the job I want when I can.

14. People would be surprised to know:

I used to be a very active person, before all of this started. I was a brown belt in shotokan karate, and even won some trophies for freestyle and Kata! I was also really into horses and horse riding, and would love to get back to that most of all, and one day own my own horse! I love swimming too and could spend hours in the pool, as its so relaxing and you can either have a great work out (without getting hot and sweaty) or a relaxing swim. Then came Ballet and Tap! I was actually okay at it, studying for vocational examinations in both which would have given me a level three qualification - something that is pretty hard to get in dance!

15. The hardest thing to accept about my new reality has been:

I may never get any better than this, I could remain sick or get sicker for the rest of my life. I could die young from the side effects of the steroids, or have an attack any day that kills me. People say that you should live every day as if its your last - when every day could be your last that's a hard thing to do. So instead, I make the point of living without regrets, so that I know I could die content.

16. Something I never thought I could do with my illness that I did was:

Go camping! I didn't think that my allergies would be able to cope with it, but i managed my medication well and changed it slightly to cope with the extra strain on my body. I know that it isn't an option all the time, as in the long run walking around like a drugged up zombie would do more damage than good, but knowing I can occasionally is great.

17. The commercials about my illness:
Are non existent....?

18. Something I really miss doing since I was diagnosed is:
Being impulsive and reckless! The freedom that comes with being able to wake up in the morning and decide that your going to get on a bus and go shopping, not having to worry about running out of energy or reserves to get through the week and most of all being able to just have fun without thinking about the consequences.

19. It was really hard to have to give up:
Volunteering with SJA - it was something that I loved and would never have given up if I had a choice. Sadly the commitment that I showed to SJA was not reciprocated and when I needed support and commitment to allow me to continue in that organisation I was shoved out through the back door. If I was in an employment contract the DDA would have kicked in,but as a volunteer i had no rights to having reasonable adjustments made to my role.

20. A new hobby I have taken up since my diagnosis is:
Crafting. All sorts of crafts have made their way into mu life! I have been very into embroidery and scrap booking for a while now, and I have really enjoyed sewing a few things. One thing I haven't done for a very, very long time is attempted to make an item of clothing, so I have brought some fabric and will be making a skirt for my niece! Fingers crossed she likes it and it doesn't look too terrible!

21. If I could have one day of feeling normal again I would:
Run, dance, sing, laugh. All those little things that people take doing for granted, I would do and I would enjoy every minute of it and cherish it forever. I would take the time to appreciate taking a deep breath and not having to spend hours on treatments - but most of all I would remind myself how lucky I am that although this day of feeling 'normal' has to end my life is rich in so many more ways.

22. My illness has taught me:
Who I can trust, rely on - who will be there through thick and thin. You learn who your real friends are when you get sick, the people that will happily come sit in a smelly hospital and hold your hand, or play stupid games to make you laugh, are the ones that matter. Its also taught me how little people appreciate what they have. They moan about having a cold or a bit of hay fever, spend hours whining about how terrible they feel, when in reality so many people would give anything to feel as they do eben for just a few hours.

23. Want to know a secret? One thing people say that gets under my skin is:
It's only asthma, you just need to take your inhalers.

24. But I love it when people:
Appreciate that I am struggling, and that I am doing my best - but I just need a bit of patience.

25. My favourite motto, scripture, quote that gets me through tough times is:
And just when the caterpillar thiught the world was over, it became a butterfly.

26. When someone is diagnosed I’d like to tell them:
It will be okay. It will be so bloody hard, but it will also be okay. Enjoy the good days when you have them, and make the most of whatever good is in the bad ones. Take time to figure out what you want from life, whats really important - and go for it, becuase you never know which day is going to be your last.

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. The reason I choose to make my illness public:

30. In my hospital bag I have...