Morningside Drive

26 May 11

[Post-a-Week] What Invention Do I Need Right Now?

Filed under: Memes,Pain — by turtlemom3 @ 10:17 pm
Regions of the cerebral cortex associated with...

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The question of the day is: What invention, as in something not yet invented (jetpack, teleportation ring, time machine) do you most need right now?

My answer: A bionic body that would work better and without pain than my current body does. I’d like to be able to exercise without pain so I could lose weight. I’d like to be able to go places with my grandchildren – without pain! I’d like to be able to go to the mall – without pain!

A bionic body would take care of the joint and back problems. Maybe it would also take care of the muscle problems.

That’s what I (and Himself) need – right NOW!!

30 March 10

54 Ways to Respond to “You Look Good”

Filed under: Chronic Illness,Chronic Pain,Invisible Illness Week,Pain — by turtlemom3 @ 8:03 am

* This list can be reprinted. Please see the attribution instructions at the end:

1. I am hangin’ in there…

2. I am so blessed. God is so good.

3. Drugs are a wonderful thing.

4. I have my good days and I have my bad days.

5. I clean up well.

6. I have my ‘good’ days….but this isn’t one of them!

7. Thanks, I wish I felt better.

8. That’s a perfect example of how you can never judge a book by it’s cover.

9. Thanks, but there are many aspects of MS (or RA, or fibromyalgia, or …) which you don’t see … would you like to know more about it?

10. That’s what most people think since pain can’t be seen most of the time. Have you heard about Invisible Illness Week? It’s really helpful to let people know that most illness is invisible.

11. I’m trying to appreciate that fact. I know the day may come when I have to use a wheelchair or a cane, and my illness will be more visible.

12. You should be on the inside.

13. Thanks. I have more to be grateful for than I have to complain about – which means I have a LOT to be grateful for!

14. Well I guess I did good job on my makeup, because I am having a hard time to tell the truth.

15. …And that’s all that really matters, isn’t it?

16. Powder and paint, make you what you ain’t!

17. It took a lot of work to look like this.

18. It’s God shinning through me.

19. It’s nice of you to think so, but you’re missing the pain and agony that I really am in.

20. And you look so wise. Looks can be deceiving though, huh?

21. I’m having a “good face” day.

22. Yeah. My kid thinks it’s cool I’m an ill person working under-cover!

23. I do a great job hiding how I really feel.My life is still very challenging and probably will always be, but I am hanging in there, keeping a positive faith, and gratitude as THE attitude. Thanks for their concern.

24. I’m trying my best to do well OVER my circumstances instead of being under them!

25. It’s up and down.

26. I’m still struggling, but it IS nice to have a day when I am able to pull myself together and make it out of the house!

27. I’m not complaining about my looks.

28. I’m very good at pretending.

29. Good, because if I looked like I feel it would scare you to death.

30. Actually, I still am really hurting…

31. I am 36 years old outside but 85 inside.

32. Thank you. I’m on my way to the Oscars.

33. Thanks, I’m grateful for this good day.

34. Things aren’t always what they seem.

35. Praise God, I’m glad that he enables me to look so much better than I feel.

36. Thanks, that’s God’s joy shining through!

37. Have you ever heard of the spoon theory?

38. I am upright which is better the alternative.

39. Thanks, want to swap bodies for a few days?

40. Thanks, I guess I am fortunate that I have an illness that can’t be seen.

41. Thanks. I like good days.

42. Want to step inside my skin?

43. It’s amazing what a shower can do. I guess I am all cried out for now.

44. Thanks…I wish I felt it!

45. I’m not complaining about my looks.

46. I’m very good at pretending.

47. Looks can be deceiving (and smile)

48. Thank God for makeup!

49. Thank you for caring. I try to act like I feel better than I really do.

50. Thanks, I am trying to even though it will never go away. i just try to remember things could be worse.

51. I’d be great if it wasn’t for the pain.

52. I’d complain but who wants to listen.

53. If I can’t feel good, at least I am determined to look good!

54. I’m in good shape for the shape I am in!

What do you say? Or what would you say if you could say anything (keep it clean!)

* This list can be reprinted. Please add the following at the end:
This list is compliments of National Invisible Chronic Illness Awareness Week at www.invisbleillnessweek.com, based on a survey of over 1200 respondents. Get involved in Invisible Illness Week each year during September, including our 5-day virtual conference online.

20 September 09

Tips for Dealing With Someone With Chronic Pain

Filed under: Chronic Illness,Chronic Pain,Invisible Illness Week,Pain — by turtlemom3 @ 1:53 pm

NOTE: I have been trying to reach the author of this wonderful set of tips for permission to publish. My attempts have been in vain. The author is in England, and I would love to hear from her!!

In the meantime, however, I just need to go ahead an publish it. Please take these to heart!

1. People with chronic pain seem unreliable (we can’t even count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up. Pain people need the “rubber time” (flexible) found in South Pacific countries and many aboriginal cultures.

2. An action or situation may result in pain several hours – or even days – later. Delayed pain is confusing to people who have never experienced it.

3. Pain can inhibit listening and other communication skills. It’s like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don’t take it personally, or think that they are stupid.

4. The senses can overload while in pain. For example, noises that wouldn’t normally bother you, seem too much.

5. Patience may seem short. We can’t wait in a long line; can’t wait for a long drawn out conversation.

6. Don’t always ask “how are you” unless you are genuinely prepared to listen – it just points attention inward.

7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like changing the laundry from the washer to the dryer, can seem like a huge wall too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.

8. Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably.

9. Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g. no place to sit or lie down).

10. Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.

11. Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited compared to the body’s ability to feel varieties of discomfort.

12. We may not have a good “reason” for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized disease. That does not reduce the pain, – it only reduces our ability to give it a label, and to have you believe us.

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