Wednesday, 16 May 2018

30 things about my chronic illnesses

1. The illnesses I live with are:
  • Brittle asthma
  • Multiple allergies
  • Anaphylaxis
  • Essential tremor 
  • Non-epileptic seizures 
  • Dissociative attacks (hallucinations, disorientation and confusion)
  • Acute urinary retention 
  • Secondary adrenal insufficiency 
  • Functional vomiting 

2. I was diagnosed with them in the year:
  • Brittle asthma (aged 15)
  • Multiple allergies (aged 15)
  • Anaphylaxis (aged 16)
  • Essential tremor (aged 14)
  • Non-epileptic seizures (aged 23)
  • Dissociative attacks (aged 23) 
  • Acute urinary retention (aged 19)
  • Secondary adrenal insufficiency (aged 21)
  • Functional vomiting (aged 22)
  • Hypoglycemia (aged 23)
3. But I have had symptoms since:

  • Brittle asthma (aged 14)
  • Multiple allergies (aged 5)
  • Anaphylaxis (aged 16)
  • Essential tremor (aged 8)
  • Non-epileptic seizures (aged 19)
  • Dissociative attacks (aged 22)
  • Acute urinary retention (aged 18)
  • Secondary adrenal insufficiency (aged 18)
  • Functional vomiting (aged 20)
  • Hypoglycemia (aged 23)
4. The biggest adjustment I’ve had to make is:

  • Being aware of my asthma triggers 
  • Reading the labels on every item of food to check it doesn't contain my allergens 
  • Using a feeding tube 
  • Taking daily medications 
  • Carrying emergency medications around with me 

5. Most people assume:

  • All asthma is, is taking a blue inhaler and then you'll be okay. However, for me and so many others it is so much more than that. 
  • People assume that anaphylaxis is just a food allergy and taking a tablet will make things better. The reality is anaphylaxis can kill if not treated properly. It is never just avoiding foods as it is not just foods that may contain your allergen. Many cosmetic products can also contain it. People assume depression is like having a bad day, things always get better in the morning. Sometimes it can be that way but other times you feel so low that you feel like there is no point anymore. 
  • As I use a feeding tube I don't eat or drink things normally. I still have to attempt to eat and drink normally as how will I know if I'm better if I don't try? 
  • People tend to think I'm either drunk or under the influence of drugs if I have a seizure or dissociative episode, this can sometimes deter people away from attempting to help me if this happens in public.

6. The hardest part about mornings are:

Waking up early. If I have been taking steroids to counteract inflammation then sometimes it causes steroid related insomnia which causes me to be awake for hours on end at night without being able to sleep even if I am tired. Some of my normal daily medications carry the side effect of drowsiness and it can be difficult to wake up if you are extremely drowsy.

7. My favorite medical TV show is:

Casualty! I cannot go without my weekly fix of Casualty. February 2013 I was granted a wish from the charity Dreams Come True. I chose to visit the set of Casualty (ironic that is haha).

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

My mobile phone! Need I say anymore?

9. The hardest part about nights are:

Trying hard not to over think and get myself really stressed and worked up about nothing. 

10. Each day I take __ pills & vitamins. 

Morning: 6 medications (2 tablets and 4 liquids) and 2 inhalers 

Middle of the day: 4 medications (2 tablets and 2 liquids) 
Night time: 5 medications (2 tablets and 2 liquids) and 1 inhaler 

11. Regarding alternative treatments I:

Believe some work while others are just either people trying to make money out of people. I have personally tried something called The Salt Caves. I find it really helps to open up my airways, keep me out of hospital and stop any bacteria from causing me problems. It's been a complete life changer for me and has drastically improved my asthma symptoms as well as allowed me to decrease the amount of medication I am using.

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

On my bad days I would chose to have a visible illness because even on bad days people still have something judgemental to say. I've been accused of over-exaggerating, had people tell me to "just get over it" as well as people trying to claim that I'm making things up. I think if people can see an illness they treat you differently to if they cannot see one. 

13. Regarding working and career:

Education and work have been really difficult for me with chronic illnesses. I had to take a lot of time out of education due to being ill. However, it has not affected me dreams. It makes me a lot more determined to achieve the things I desire. The biggest example of this is when I strived to get to University and through a lot of hard-work and determination, I got there. 

14. People would be surprised to know:

I do not constantly put everything about my illness over social media. I don't always let people know when I have been admitted to hospital.

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

Giving up some of the things I used to love, taking medications daily to keep me alive and as okay as possible, the horrible side-effects of steroid medication and having to stop eating foods I once enjoyed. 

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

Get to University. Despite struggling, I got there in the end.

17. The commercials about my illness:

Help raise awareness of my reality and everything I go through on a daily basis.

18. Something I really miss doing since I was diagnosed is:

Going on holiday, I haven't been abroad in a number of years (8 years), it's something I'd love to do again.

19. It was really hard to have to give up:

Nuts and peanuts.

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:

Enjoy eating whatever I like without having to worry about what the food contains and whether or not it's safe for me.
22. My illness has taught me:

Who truly matters in life. The people who never judge you no matter what and have been there the whole way through without walking away or treating you differently are the ones who deserve to be in your life. 

23. Want to know a secret? One thing people say that gets under my skin is:

"It's just a cold" someone with a normal immune system a cold is a slight sniffle, maybe at worse you need to take a day or two off work to stay in bed...however to someone with severe asthma a cold is not just that. A cold is like the flu 100 times over. It's a potential chest infection, a large chance of ending up staying in hospital and maybe even a stay in intensive care or high dependency. 

24. But I love it when people:

Treat me the same as any other person my age. 

25. My favorite motto, scripture, quote that gets me through tough times is:

"You were given this life because you are strong enough to live it"

26. When someone is diagnosed I’d like to tell them:

Even though it is going to be hard things do get easier.

27. Something that has surprised me about living with an illness is:

You value the little things (such as: getting dressed, going to University, managing a week healthy) so much. Even though to others they are not big things, for you and others with chronic health issues...they are everything. 

28. The nicest thing someone did for me when I wasn't feeling well was: 

Held my hand, hugged me, told me everything would be okay in the end. 

29. I’m involved with Invisible Illness Week because:

96% of chronic illnesses are invisible...more awareness needs to be raised. 

30. The fact that you read this list makes me feel:

Maybe you finally understand somewhat of what I go through.

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