Invisible illness awareness week tag

It's INVISIBLE ILLNESS AWARENESS WEEK! And because my Invisible Illnesses happen to be keeping me awake, I decided to do my 30 Things tag! If you have an invisible illness or five, I TAG YOU!
I stole this from the wonder Shay Batte.

30 Things About My Invisible Illness You May Not Know – 30 Things Meme

1. The illness I live with is:
Fibromyalgia syndrome, chrondomalacia patellae, polycystic ovarian syndrome, panic anxiety disorder, generalised anxiety disorder, depression, tempromandibular joint disorder, a genetic hip socket malformation that I can't name, hypermobility syndrome (under investigation as to whether this is EDS or just HMS),  multiple food, medication and other allergies, 'sticky' blood, undiagnosed heart palpitations...I THINK that's all...

2. I was diagnosed with it in the year:
Several different years of course, mostly beginning in 2010 though some from birth.

3. But I had symptoms since:
Looking back it seems my symptoms of fibromyalgia have been around since I was a young child, however I was 18 when they ramped up enough for an investigation. That was the worst period of time in my life.

4. The biggest adjustment I’ve had to make is:
Adjusting my goals and dreams. I don't think I'm quite there yet but I'm trying.

5. Most people assume:
That I'm faking or exaggerating, because I come across as bubbly and smiley. I've become a good actress.

6. The hardest part about mornings are:
Lethargy, fatigue, muscle and joint pain, headaches and the feeling that I didn't sleep at all (I probably slept very little)

7. My favorite medical TV show is:
 I like House, I quite liked The Red Band Society but I don't watch any others at all.

8. A gadget I couldn’t live without is:
My phone, having a connection to the outside world and a means to call for help is vital.

9. The hardest part about nights are:
Pain and insomnia (painsomnia), nightmares when I do sleep.

10. Each day I take:
Medication to keep my pain at a bearable level, it doesn't always work. Extra pain meds of varying strengths. Meds to keep anxiety at bay, which doesn't always work. Meds to counteract the side affects of the other meds.
- A deep breath and thank Him that I have another day here.

11. Regarding alternative treatments I:
Am sceptical. I've tried a fair few and only had bad experiences. Unless you have a truck load of medical experience, specialist knowledge and infallible research don't peddle your wares here. I'm currently out of medication options, what I'm on now is ruining my body but I have no choice.

12. If I had to choose between an invisible illness or visible I would choose:
I want to say visible because being invisible is so hard. But then I think, and feel grateful that some days I can pass for 'normal' whatever that is.

13. Regarding working and career:
 I would love to, I love the career I studied for but I can't do the hours the employers want. I had to realise that my career goal would likely end up crippling me physically, mentally and financially so I still haven't really adjusted to that.

14. People would be surprised to know:
98% of my friends are online and are sick too, because able-bodied friends don't seem to stick around much. (this is Shay's answer...I don't need to change it)

15. The hardest thing to accept about my new reality has been:
I lost a lot of what I thought defined me, finding a new identity was and still is hard. I'm not good at accepting my limitations, not being what I think I should be is incredibly hard to manage.

16. Something I never thought I could do with my illness that I did was:
At a few points I thought just living wasn't a possibility, now I strive to thrive instead of survive.

17. The commercials about my illness:
Don't exist.

18. Something I really miss doing since I was diagnosed is:
Being spontaneous, living IN the moment and not contemplating every moment.

19. It was really hard to have to give up:
My self imposed expectations of what my life would be. To be honest I don't remember life before...I miss denim I think.

20. A new hobby I have taken up since my diagnosis is:
Blogging, book tube, embroidery, colouring...anything I can do whilst at rest really.

21. If I could have one day of feeling normal again I would:
This is my normal, waking up in pain is normal to me. I don't remember not feeling that way.
If I could wake up free of all symptoms? I would run, I would cry, I would go to the beach, I would eat so much cheesy pasta and garlic bread, I would probably actually just lay silently crying.

22. My illness has taught me:
That it's okay to not be perfect (which I'm working in accepting)

23. Want to know a secret? One thing people say that gets under my skin is:
'You just need...'
NO

24. But I love it when people:
Take me into account when planning or being around me in a sensitive way. I love, love, love how kids are when they ask questions and make comments.

25. My favorite motto, scripture, quote that gets me through tough times is:
'Wherefore, be not weary in well-doing, for ye are laying the foundation of a great work. And out of small things proceedeth that which is great.' D&C 64:33 (fun fact, this was my favourite saying for years before I even knew what D&Cs were)

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

27. Something that has surprised me about living with an illness is:
The community, I felt so alone until I found the utterly amazing community of sick people around me.

28. The nicest thing someone did for me when I wasn’t feeling well was:
Stayed with me, six years and counting, after I begged them to leave and find someone better.

29. I’m involved with Invisible Illness Week because:
If we don't shout about it, who will?

30. The fact that you read this list makes me feel:
Like there may be hope.