22 Things You May Not Know About Me

22 Things About My Invisible Illness You May Not Know

1. The illness I live with is:  Permanent Severe S1 Nerve Pain, Failed Back Syndrome and intermittent flares of (suspected) Central Pain Syndrome.  Have an implanted Spinal Cord Stimulator.

2. I was diagnosed with it in the year: 2008

3. But I had symptoms since: 2005 (Had 3 surgeries at L5-S1 in 12 months.)

4. The biggest adjustment I’ve had to make is: Learning to function/think/talk with a constant pain override - like a train whistle constantly blaring in your ear, never stopping.   To understand, put a tack in each buttock, both legs and both calves and tape them down.  Imagine occasionally stepping on a tack (to mimic the shooting/lightning strike fire pain that comes intermittently). Now function.  Ignore that pain as best you can.

5. Most people assume: I am fine because I'm always smiling.

6. The hardest part about mornings are: Waking up crying in pain.

7. My favorite medical TV show is: House, but I don't watch it anymore.  House suffers from horrible nerve pain as I do, but the way they portray him is somewhat unrealistic.  I understand why he is cranky.

8. A gadget I couldn’t live without is: Computer.  Distraction is my greatest weapon against the pain.

9. The hardest part about nights are: Besides actually falling asleep unless delirious, it is knowing that despite my best efforts, I will still wake up wanting to cry or actually crying.

10. Each day I take 20 -25 pills, supplements & vitamins. (No comments, please)  Vitamin D greatly helps my pain, for example.

11. Regarding alternative treatments I: have tried acupuncture, acupressure, EFT, CBT therapy, Massage, and more.  I actually never stop looking for something to help.

12. If I had to choose between an invisible illness or visible I would choose: Visible.  Less to explain.

13. Regarding working and career:  Never again.  Ironically, if I hadn't gotten 3 jobs during a time of uncertainty, this might never have happened to me. 

14. People would be surprised to know: that I am not exaggerating when I say that the nerve pain is 24/7 burning, SEARING pain.  They see me smile and think, "It can't be that bad".  Only my husband sees my tears, anguish and suffering.

15. The hardest thing to accept about my new reality has been: That the pain will really really REALLY never go away.

16. Something I never thought I could do with my illness that I did was:  travel again in a vehicle over 30 minutes.

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

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

19. It was really hard to have to give up: the ability to drive and go where I wanted.  

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:  Walk barefoot and enjoy the sensations of NORMAL feet touching the ground, grass, pavement, carpet.......

22. My illness has taught me:  You never know what is going on with someone, especially those with "invisible illness".

I missed "National Invisible Illness Week" but wanted to share.