30 Things About My Invisible Illnesses (You May Not Know!)

….As part of  Invisible Illness Awareness Week 2011, here are my 30 Things About My Invisible Illnesses that you may not know about me!

1. The illnesses I live with areChronic Severe Difficult to Control Asthma, Gluten/Wheat allergy and Migraine.

2. I was diagnosed with them in: 2005 (Adult onset version of severe difficult Asthma), 2006, Wheat Allergy and since childhood, aged 6 (Migraine).

3. But I had symptoms since: Mostly throughout my life on and off for all illnesses.

4. The biggest adjustment I’ve had to make is: Not being able to plan things so easily-not knowing what is around the corner.

5. Most people assume that ‘asthma’ is just a blue inhaler and migraine is just a really bad headache! And people who can’t eat wheat are just fussy!

6. The hardest part about mornings are: My lungs are very congested and I need to cough a lot, do physio and require many medications. It takes me so much longer to get ready in the early morning than mid morning!

7. My favourite medical TV show is: Embarrassing Illnesses (Dr Christian Jessen)

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

9. The hardest part about nights are: Constantly waking up in the small hours, feeling like I am suffocating and not being able to breathe, and often with a terrible migraine

10. Each day I take 17 different pills.

11. Regarding alternative treatments I have tried several types of homeopathy both for my lungs and headaches, physiotherapy, reflexology and Chinese Herbs.

12. If I had to choose between an invisible illness or visible I would Probably still choose to have an invisible one.

13. Regarding working and career: I used to teach  full time before I became this ill in 2005. I had a lengthy period off sick in 2005-6 and fought tooth and nail to return to work in some capacity in my old job. I had a phased return and then settled on 2.5 days and have managed to increase to 3 days. I work in the same school, and with many of the same people who knew me before I became this disabled by illness. It has been a hard adjustment for myself and them.

14. People would be surprised to know: That I used to run regular half marathons and was very strong and super fit!

15. The hardest thing to accept about my new reality has been: Not being able to play sports/run anymore, although I started doing daily gentle swimming in Jan 2008, and this year, 2011, I have been working at improving my walking with our little Chihuahua, Anna-Bell.

16. Something I never thought I could do with my illness that I did was: Enjoy swimming so much-even in the cold and wet of the winter months! And become an all weather dog walker/owner!

17. The commercials about my illness are mainly on TV in the USA and involve happy people with lovely happy lifestyles, taking a daily dose of an inhaler and always feeling better. Magazine articles usually show the sufferers as being older people, or children, seldom people my age, (early 40s), trying to battle on with  a severe form of the illness.

18. Some things I really miss doing since I was diagnosed are: Playing my Oboe and riding my bike, and the freedom to do things, spontaneously, as I always have to plan days out and weekends away so meticulously, remembering  all my drugs, nebs, oxygen, and food supplements.

19. It was really hard to have to give up the life I had: fun, carefree, never thinking twice about going out, not worrying about the future.

20. A new hobby I have taken up since my diagnosis is swimming (Jan 2008) and this blog (Jan 2010), and being a dog owner, (Jan 2011).

21. If I could have one day of feeling normal again I would  pile Julian and Anna-Bell into the car and drive out into the country for a wonderful out door type of day and a pub lunch somewhere. Not having to worry about allergies in the air, pollen, or wheat flour and gluten in the food in the pub. And not having to think about nebs, and O2 and physio and drug routines.

22. My illness has taught me: to live every moment to the full, but to always be compassionate and understanding of others less fortunate in their lives and with their invisible illnesses.

23. Want to know a secret? One thing people say that gets under my skin is: “But she doesn’t look ill”.

24. But I love it when people: talk to me like I am a completely normal person. Because, really, I am!

25. My favorite motto, scripture, quote that gets me through tough times is: “Unstoppable at Achieving the Unthinkable: This is really my mantra.

26. When someone is diagnosed I’d like to tell them: To be hungry for information. Learn everything there is to learn about your illness, and never settle for one opinion. Do as the doctors say and find your own routines that work for you. Keep as active as you can, work through the breathlessness and try to keep yourself as ‘in condition’ as you possibly can. Not every person’s version of the illness will be the same. Accept some treatments may not work for you. Investigate all others and all avenues. Read and Learn and above all, Live!

27. Something that has surprised me about living with an illness is: How many people can really empathise with me, how many friends I have made, both in real life and online, and how many things we have all learned from each other, through sharing our illness experiences.

28. The nicest thing someone did for me when I wasn’t feeling well was: to come and sit by my hospital bed for hours when I was truly feeling my worst. She kept watch over me and truly understood what I was going through. She prayed for me. She is now one of my closest friends.

29. I’m involved with Invisible Illness Week because: as somebody who suffers from invisible illness, I feel it is my duty to share my experiences in the hope that others may learn and gain some strength from my experience.

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


2 Responses to 30 Things About My Invisible Illnesses (You May Not Know!)

  1. ls says:

    Hello Susannah!

    Your blog is refreshing, I am currently on Foulis Ward – I am sure you know it well!

    Unlike you I have had asthma all of my life and it does not get easier. I have recently applied to be medically retired – I am a Chartered Surveyor and it has not been an easy decision. Well done you for keeping your job – I hope that I have not thrown in the towel too early!

    I got two retired greyhounds three years ago after a stint in hospital and they are fantastic – I would be lost without them.

    Sure Asthma is an invisible illness but we are fortunate in that we have met such wonderful people.

    Take care and keep well

    • Hi, sorry to learn you are on Foulis again! I really hope you get over this bout quickly. Thanks for stopping by and sharing some of your story-greyhounds are indeed beautiful loving and gentle dogs-it is a myth they need so much exercising-probably no more than our chihuahua really-so perfect for you with your asthma! That’s too bad you are having to give up your career. This is always round the corner in my mind. Like you I am determined to keep going as long as I can-but everyday is a battle. I’ve just had 3 good days in a row-bliss, but am bad again this morning.
      Heal quickly and thanks so much for stopping by.

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