Wednesday, March 23, 2011

30 Things About Living With Endometriosis You May Not Know

1. The illness I live with is:
Endometriosis. Endometriosis is when the endometrial tissue abnormally grows outside the uterus. Normally during menstruation, the lining sheds and is discharged from the body, however, the blood from the endometrial tissue growth outside the uterus has no where to go which builds up, and as a result produces inflammation and scar tissue.


2. I was diagnosed with it in the year:
2007

3. But has symptoms since:
2004

4. The biggest adjustment I've had to make is:
Learning to cope with the pain and fatigue and adapting to new limitations.

5. Most people assume:
Endometriosis is just period pain that can be helped by popping a couple of ponstan pills and then be on your merry way. Due to adhesions I experience pain almost on a daily basis and when bad period pain hits I need a lot more than ponstan to get me through- try panadeine forte six hourly. Endometriosis is an invisible disease but just because I look "well" doesn't mean that I'm not in pain and that I'd rather be curled up in bed. Most people assume that because I'm out and about that I must be feeling better, when in fact I feel terrible and everything that I need to do for the day is a struggle sometimes.

6. The hardest part about mornings are:
Going to the toilet first thing in the morning. Bladder pain from adhesions is nasty.

7. My favourite medical tv show is:
Greys Anatomy

8. A gadget I couldn't live without is:
My laptop. Hands down. It keeps me in touch with my friends and blogging helps me to express myself and get me through the tough times. Social networking support forums help me feel less alone and encouraged.

9. The hardest part about nights are:
Finding a comfortable position to sleep. I'm a stomach sleeper which is really difficult when the pain and bloating are a problem, especially after surgery.

10. Each day I take 0-6 pills and vitamins (no comments, please):
Some days I don't require pain killers, others I may need over the counter or prescription drugs. I take evening primrose oil capsules daily for pre-menstrual tension.

11. Regarding alternative treatment I:
Had a bad experience with acupuncture so I am very hesitant and skeptical about alternative treatment.

12. If I had to choose between an invisible or visible illness I would choose:
Invisible. As much as I hate the frustration and the isolation of an invisible illness at least I look good because if I looked the way I feel, I would scare you.

13. Regarding working and career:
I had to quit my studies to become an early childhood teacher due to not only endometriosis but fibromyalgia, inflammatory/rheumatoid arthritis and CFS. I am currently work disabled on disability. I am looking at starting a craft business selling handmade gifts, baked treats and cupcakes so I can work from home around the pain, fatigue and side effects.

14. People would be surprised to know:
This disease is so much more than just physical pain. There have been various hormonal treatments that I have tried which have cause shocking depression and various other side effects which impacts not only physically, but mentally and emotionally also and because of this, I have lost the will to live at times. It's a dark place that I wouldn't wish anyone to experience.

15. The hardest thing I've had to accept about my new reality has been:
Having to live spontaneously and go with the flow, making the most of the good days and accepting defeat on the bad days. Learning to deal with the unpredictability and uncertainty of the disease is very difficult.

16. Something I never thought I could do with my illness that I did was:
Write about it. Endometriosis is a very personal and difficult disease to talk about.

17. The commercials about my illness:
There aren't any.

18. Something I really miss doing since I was diagnosed:
Going for long runs.

19. It was really hard to have to give up:
Time. Spending days curled up with a heat pack really sucks sometimes.

20. A new hobby I have taken up since my diagnosis is:
Blogging, scrapbooking, card making and nail art.

21. If I could have one day of feeling normal I would:
Go for a run along the beach.

22. My illness has taught me:
To slow down and take things one day at a time.

23. Want to know a secret? One thing that gets under my skin is:
"You look well, you must be feeling better!" I'll let you know when I'm feeling better.

24. But I love it when people say:
"I really admire you. You are doing such a great job. Is there anything I can do that will help and encourage you?"

25. My favourite motto, scripture, quote that gets me through the tough times is:
"Those who hope in the Lord will renew their strength. They will soar on wings like eagles, they will run and not grow weary, they will walk and not be faint."- Isaiah 40:31

26. When someone is diagnosed I'd like to tell them:
When considering treatment options do your own research, doctors don't tell you everything and they certainly don't know everything. You have to be your on advocate and do what feels right for you. Join support forums and connect with other women who can encourage you and help you make informed decisions and provide advice on the pros and cons of certain treatment options.

27. Something that has surprised me about living with illness is:
How ignorant and insensitive some people can really be.

28. The nicest thing someone did for me when I wasn't feeling well was:
Send me flowers.

29. I'm involved in Endometriosis awareness month because:
I have endometriosis but it doesn't have me! I want a voice and I wish to spread awareness. Endometriosis can be extremely painful and debilitating at times and affects more than millions worldwide. We need a cure.

30. The fact that you read this makes me feel:
Encouraged. The fact that you took time out to read this and care enough to be informed is appreciated- thankyou!




This is a meme from the invisible illness awareness week website

All answers written by Emily Ruth
© 2011 chronicallycreative.net








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4 comments:

Woman Warrior said...

Really love this! I will answer these and post this on my website as well. The more experiences we can put out there the more likely "new diagnosees" can feel supported, understood and less alone!

Krissy said...

i liked reading this... its interesting to hear your perspective of endometriosis :)
anddd i also like the fact that you wanna start your own business... i think you would be so fab at it :D

phylor said...

This is a great "text" on endometriosis. I deal with the after effects of years of endometriosis tissue build up. So, I know a bit about how you feel, and how the condition impacts on your life.
Hopefully with folks drawing attention to endometriosis like you have been, will raise the awareness of this health issue.
Thanks for posting this.

Emily Ruth said...

Thanks everyone :)

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