30 Things About My Invisible Illness You May Not Know

I am what a person with an invisible illness looks like
Meme – Invisible Chronic Illness Awareness
This week is “National Invisible Chronic Illness Awareness Week“.

Most people have done this for only one illness if they happen to have more than one. To me, this makes the ones you don’t talk about even more invisible. So I’ll be covering the lot for me.

==30 Things About My Invisible Illness You May Not Know==


1. The (invisible) illness(es) I live with are:

T2 diabetes, osteoarthritis, osteoporosis, lymphedema , ADD and sjogren’s syndrome. Sometimes the OA (osteoarthritis) is visible such as when I need to use a cane but other times it’s not something you can see.

2. I was diagnosed with it in the year:
1976 for T2 diabetes, then declared ‘cured’ in 1978. Rediagnosed 2006.
2004 (?) OA, 2008 (osteoporosis) 2009 (sjogren’s)

3. But I had symptoms since:

Hard to put a date or year to, so will skip this.

4. The biggest adjustment I’ve had to make is:
Learning to live with adjustments.  Exercise is essential as are to-do lists for the simplest of things.

5. Most people assume:
That I’m much better than I really am.

6. The hardest part about mornings are:
Getting out of bed, being stiff. Having to eat breakfast in order to take 9 pills in the morning. Having an extremely dry eyes, nose, throat and mouth due to Sjogren’s.

7. My favorite medical TV show is:
A toss up between House and Scrubs for different reasons.

8. A gadget I couldn’t live without is:
My glucose meter and my mobile phone (which does step counting and has a wellness diary I use daily).

9. The hardest part about nights are:
Getting comfortable and turning off my brain so I can sleep.

10. Each day I take __ pills & vitamins:
26 plus additional pain meds and tissue salts as needed

11. Regarding alternative treatments:
I use tissue salts because they help make up the gap in pain medication. If they didn’t work for me, I wouldn’t bother.

You have to be very careful. Before I started oral meds for diabetes I used green tea to help keep my glucose lower. Recent studies show that green tea can cause mice to lose bone and bone density, which with osteoporosis can make it a lot worse.

12. If I had to choose between an invisible illness or visible I would choose:
I would choose none of the above!

13. Regarding working and career:
I’m on disability now so no longer have to worry about this and I’m glad I don’t have to try to work in the 9-5 rat race. I would find it extremely difficult.

14. People would be surprised to know:
If it weren’t for daily to-do lists, I probably wouldn’t remember to do basic things if my routine gets disrupted.

That exercise isn’t a choice for me it’s a requirement for more reasons than just fitness as it affect my diabetes glucose results, keeps my body from turning completely stiff, helps build up bone that is slowly wearing away, and improves my mental functions.

That when I talk about getting things done, it often has nothing to do with ‘projects’ and lots more to do with just the day to day things most people take for granted and don’t even think about.

15. The hardest thing to accept about my new reality has been:
That there are times when doing anything is pretty much not going to happen and I have to learn to only do what I’m able to on the day.

16. Something I never thought I could do with my illness that I did was:
The year I had no teeth. They were pulled because they were falling apart and I was to have dentures 3 months afterwards but due to slow healing diabetes and the dry mouth problems of Sjogren’s Syndrome that 3 months got pushed to over a year. During that year I went to see my family in the USA. Being out in public without any teeth had been a big hang up of mine, but the need to see and be with family took precedence. I survived.

Yes this is a visible thing (like when smiling, eating or talking), but the REASON’s for it were invisible.

17. The commercials about my illness:

For most of my illnesses there are no commercials. Otherwise they all show geriatric patients. I am by no means geriatric even though I feel like it a lot of the time.

18. Something I really miss doing since I was diagnosed is:
Riding on the back of our motorcycle with Rod.  Not a very good idea when you have brittle bones.

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

Junk food.

20. A new hobby I have taken up since my diagnosis is:
Spending even more time on the computer…  being owned by a cat, digital photography. Does Twittering count??

21. If I could have one day of feeling normal again I would:

Eat Reeces PB cups all day and shop.

22. My illness has taught me:
To be content with what I can do and what I have right now.

23. One thing people say that gets under my skin is:

When diabetics say ‘People don’t blame cancer patients for their cancer’.  UGH. Breast cancer patients (I’m an 8yr survivor) deal with that all the time. You had too much dairy, you used deoderant, you lived in the wrong place etc.

When people tell me not to worry so much about what I want to accomplish for each day. I NEED to do these things as it makes me feel better.

24. But I love it when people:

Give me permission to have a ‘do nothing’ day.  Although, it really is counter to what I physically need, it’s nice to have that ‘permission’.

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

‘This too shall pass’.
‘Just put one foot in front of the other.’

26. When someone is diagnosed I’d like to tell them:
You need to take things one day – one hour – one minute – one second at a time.

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

That I can find new ways of doing things that work for me. It’s amazing how inventive we can be.

28. The nicest thing someone did for me when I wasn’t feeling well was:
Send me a big box of Reeces Peanut Butter Cups for no reason at all.

29. I’m involved with Invisible Illness Week because:
If we don’t talk about it, people will never understand what we go through.

30. The fact that you read this list makes me feel:
Good. It’s nice to be heard.  Thank you!

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