Saturday, 7 September 2013

Thirty things you may not know about my invisible illness

I am taking part in the thirty things meme for invisible illness awareness week. So, here's mine:

1. The illness I live with is: hypermobility syndrome, otherwise known as joint hypermobility syndrome or Ehlers-Danlos (EDS) hypermobility type

2. I was diagnosed with it in the year: 2012

3. But I had symptoms since: Birth?!

4. The biggest adjustment I’ve had to make is: That's hard to say, because it's something I've had all my life and the symptoms have crept up on me gradually, so there was no sudden big change to deal with

5. Most people assume:That if you appear basically normal on the school run, around town etc, that really there's not much wrong with you

6. The hardest part about mornings are: Waking up feeling exhausted and knowing I have to get up and keep myself going through another day of relentless fatigue

7. My favorite medical TV show is: I used to love the old school ER

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

9. The hardest part about nights are: Not being able to sleep due to joint pain, muscle aches, stomach trouble and excessive adrenalin

10. Each day I take __ pills & vitamins: A multivitamin/ mineral especially for people with unstable blood sugar, vit D, B12 (can be poorly absorbed in people who are gluten intolerant like me), vit C (used in collagen repair), Mg (reduces muscle aches), horse chestnut tincture for varicose vein pain, probiotics

11. Regarding alternative treatments I: Wish I could afford them!

12. If I had to choose between an invisible illness or visible I would choose: That's a weird question. I'd rather be well. Otherwise- who can pick a disease?

13. Regarding working and career: I am sad that I will probably never get to have a career, and maybe not be able to work at all, and feel constantly guilty about the financial consequences for my family

14. People would be surprised to know: You tell me? LOL

15. The hardest thing to accept about my new reality has been: There are two- one is just the constant physical reality of living with aches and pains and fatigue and the other is the restrictions it places on my life in terms of what I can do for others and all the hope and dreams I have had to let go of

16. Something I never thought I could do with my illness that I did was: Hmm, nothing yet

17. The commercials about my illness: Eh? No one has even heard of it

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

19. It was really hard to have to give up: My plans for studying and work

20. A new hobby I have taken up since my diagnosis is: Pilates. Not really a hobby. I don't really enjoy it but it does help

21. If I could have one day of feeling normal again I would: Go for a massive family day out with lots of walking and then out for pizza and cheesecake (gluten!)

22. My illness has taught me: That I have to find value in being rather than doing. I can't say I am any good at that yet though!

23. Want to know a secret? One thing people say that gets under my skin is: Can't really think of anything, well, I suppose it would be when people downplay it as if it is just a minor annoyance

24. But I love it when people: Listen when I talk about it and show that they accept what I say

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

26. When someone is diagnosed I’d like to tell them: Come over to the HMSA forum.And beware NHS physios!

27. Something that has surprised me about living with an illness is: I don't think there has been anything surprising. Well, except my surprise at finding out that many doctors and specialists don't even believe in my illness and are woefully ill-informed about it. After years of battling for a diagnosis I thought I had finally made it, but I have not found any useful help via medical professionals as yet.

28. The nicest thing someone did for me when I wasn’t feeling well was: Listened to me whining and gave me gentle sympathy

 29. I’m involved with Invisible Illness Week because: There are so many people suffering with invisible illnesses and people often don't really seem to understand what it is like and how hard it can be to be chronically ill in this way

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