30 Things About My Invisible Illness You May Not Know – Invisible Illness Awarness Week (Day1)

Today marks the beginning of invisible illness awareness week (8-14th September) and to raise awareness I am going to post a blog a day whether that be in my new personal updates section or even a recipe.

To start the week off I am going to participate by sharing with you the “30 Things About My Invisible Illness You May Not Know” if you would like to participate or find more about invisible awareness week click here.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is:
ME/CFS

2. I was diagnosed with it in the year:
January 2014

3. But I had symptoms since:
September 2013

4. The biggest adjustment I’ve had to make is:
Going juggling full time work, study, chairing a charity and an active social life to going to nothing and having to slowly build my activity levels up. Instead of being able to be spontaneous I have to carefully think of the consequences and preparation of everything I do.

5. Most people assume:
That because I look fine and act fine most of the time when I am out and about that I should push myself further than I am currently doing.

6. The hardest part about mornings are:
Everything! I have never been a morning person but things are so much worse now I have CFS.

I have gone from wanting that extra few minutes in bed (and having them!) and being able to get from bed to car in 10 minutes; to something every different, it usually takes me 30-45 minutes to get out of bed as my bones feel like they are made of lead and everything hurts.

7. My favorite medical TV show is:
I recon that would probably have to be Greys Anatomy 🙂

8. A gadget I couldn’t live without is:
My iPhone it keeps me from falling back asleep in my 30mins or so before I can get out of bed, as well as keeping unto date on Facebook and emails. It really is a life line for me.

9. The hardest part about nights are:
Getting comfortable and cool enough to sleep.

10. Each day I take __ pills & vitamins:
Various lol!

11. Regarding alternative treatments:
I have a massage every 4-6weeks.

12. If I had to choose between an invisible illness or visible I would choose:
I would choose neither! But I think a visible one would be easier as people wouldn’t think you look ok so you must be ok.

13. Regarding working and career:
I went from working FT at a top accounting firm to going of on sick leave, I am now on a phased return to work, where I started off just 2hrs p/w and am now on 7hrs p/w and working up slowly but surely and hopefully within a year to a year and a half I will be back to FT hours.

I wrote a post on advise I have been given on phased return (Link)

14. People would be surprised to know:
That despite everything I am still optimistic that I will recover from this illness.

15. The hardest thing to accept about my new reality has been:
How I have had to completely change my life. It was/is really hard to stop comparing myself to what I used to be able to do.

16. Something I never thought I could do with my illness that I did was:
Pass my final chartered accounting exams and managed to complete a learn to ski day.

17. The commercials about my illness:
There are none, I am excited to watch the feature documentary Canary in a Coal Mine which is due out at the end of next year (Link)

18. Something I really miss doing since I was diagnosed is:
Being spontaneous and juggling doing lots of things at once.

19. It was really hard to have to give up:
Working full time and traveling

20. A new hobby I have taken up since my diagnosis is:
Blogging 🙂

21. If I could have one day of feeling normal again I would:
It would be a Friday, I would go to work for the day (I know sad right!) and then go for drinks and dinner after work and maybe hit a few bars after.

22. My illness has taught me:
Patience

23. Want to know a secret? One thing people say that gets under my skin is:
If you are able to do X, you can do XYZ!

24. But I love it when people:
Friends get in touch to see how I am or invite me to things like lunch or a coffee to catch up.

25. My favorite motto, scripture, quote that gets me through tough times is: 
It is a toss up between: Slow and steady wins the race & Take one day at a time.

26. When someone is diagnosed I’d like to tell them:
Firstly trust your body and to allow yourself to rest and to take it slow.

Secondly accept where you are right now and try not to compare yourself to what you used to or what other people are doing.

27. Something that has surprised me about living with an illness is:
How much peer to peer support there is online, through various Facebook groups, blogs and youtube videos.

28. The nicest thing someone did for me when I wasn’t feeling well was:
My boyfriend for helping me from things like helping me sit up when I couldn’t myself, to taking on more around the house (especially when we moved house) and for continually telling me to take rests when I don’t want to.

29. I’m involved with Invisible Illness Week because:
I feel it is important to raise awareness so that more can gain an understanding that just because you look ok doesn’t mean you are ok.

30. The fact that you read this list makes me feel:
Inspired that people want to learnt more about illnesses like mine.

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s