“Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.”  Leo Buscaglia

I am disgustingly healthy!  I do not get headaches, toe-aches, tummy aches, ear aches or any aches or pains.  Every five years or so I get the flu and am totally unable to deal with the discomfort or pain of flu…I will stay in bed and when I hear Danie walking up the stairs to our room I will actually start groaning.  It is involuntary.  I am a ninny.  My family joke with my non-existant pain threshold.  Yet I see the doctor once a year for an annual check-up as I did last week.

Liver, lungs, kidneys perfect according to my blood tests.  Slightly elevated cholesterol count.  Doctor says I am in near perfect health.  So how do I understand my child’s pain and discomfort?  I don’t!  If you were born blind how could you ever understand or appreciate color?

There is a very brave young lady called Katie Mitchell, who suffers from Marfan’s Syndromehttp://connectivetissuedisorders.wordpress.com  Katie gives me an insight into pain… She articulates her feelings beautifully.  Katie lives, breathes and understands pain… Katie has become my window into Vic’s painful journey…Katie re-posted a blog on pain and I found it so enlightening.  I will actually print the document and discuss it with the family.

Katie writes in red and my comments are in black:

Tips for dealing with people in pain:

1. People with chronic pain seem unreliable (we can’t count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up. Vic is always trying to go to breakfast with Angela, lunch with Mrs Cramp and coffee with Tracey.  Vic very seldom is able to stick to a commitment.  It fills her with remorse.  She desperately wants some normality in her life.  Some semblance of a social life.  Pain and ill-health prevent it!

2. An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.  Oh this I truly relate to…Vic sitting in the sun and crashing later, Vic trying to participate in a family barbecue and spending a week in bed to recover… Every action has a painful consequence!  As a family we dread Vic’s brave (but stupid as far as we are concerned) attempts of participating in life.  As a family we become angry, frustrated and scared when Vic tries to “live”!

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.  I never realized or appreciated this aspect of pain.  I often thought to myself Vic must be doped up, disinterested… As a family we were not aware of this aspect of pain.  Vic at times seems totally disinterested in the boys, the family, in life…

4. The senses can overload while in pain. For example, noises that wouldn’t normally bother you, seem too much.  Vic battles with too much movement or noise.  She becomes very irritated.

 5. Patience may seem short. We can’t wait in a long line; can’t wait for a long drawn out conversation.  Absolutely!!  If Vic wants something she wants it now

 6. Don’t always ask “how are you” unless you are genuinely prepared to listen it just points attention inward.  Sometimes I am too scared to ask.  Some day’s I say “Oh, you are looking so great today” and Vic will reply “Oh good…” and I know that she is thinking “Tell my body!  I am feeling like death”

7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, 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.  Tonight Vic could not rub the hand cream into her little hands.  She could not pull a brush through her hair…

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 to othersI think Vic is past this stage.  Her pain is debilitating relentless and never-ending!

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).  We are past the visiting stage.

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.  Every small action elicits a “Thank you Mommy”  Reuben actually remarked that in the past Vic took everything that I did for her for granted.  At this stage of her life Vic drives me absolutely mad with all the “Thank-You’s”

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.  Vic’s pain is well-defined but at times she has referred pain.

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.  We do not understand pain.  I never have pain.  I cannot imagine not being able to walk, run, work, function, drive, live due to debilitating pain.  I groan from flu-pain…I don’t know how it feels to have a frozen abdomen, fractured vertebrae, migraines from skeletal collapse, chronic and unrelenting tissue pain…. There are times that I think surely it cannot be that bad?  I don’t understand Vic screaming with pain but I KNOW her pain is real!!!

Author Unknown” http://connectivetissuedisorders.wordpress.com/2011/05/20/tips-for-dealing-with-people-in-pain/

 In addition to the above I would like to add some of my own observations…

13.  Pain makes people emotionally over-sensitive.  Vic often misinterprets what we say.  She takes things very personally!  She is almost jealous of the boys and my relationship.  She feels excluded from so many aspects of our lives.  Last week Vic said “You are the fun-Oumie.  I don’t make my boys laugh”… She is very sensitive as to who the boys ask permission to do things or go places…   It is okay because she is scared of losing everything that is precious and dear to her.

14.  Pain makes people selfish.  This is a harsh statement.  When your body is engulfed in pain it must be very difficult to see reason and to wait.  It must be difficult not to lash out at the world.  To not stop and think of the effect that your illness has on your family and friends.

15.  Chronic pain and depression are closely linked. Chronic pain almost always leads to depression:  Why?  Just imagine a life consisting of dreadful, mind-blowing, unrelenting pain?  Imagine not having anything to look forward to…  We try to set little goals for Vic.

16.  Fatigue is a definite factor.

23.2.2012

Whether it is the pain medication or the emotional strain of coping with the pain, Vic is chronically and permanently tired.   We leave her to sleep.  We are far happier seeing her in bed than seeing her battle to walk, sit or participate…It stresses us that she gets up when she is so tired.  Vic falls asleep in a chair, the bath, the car, on her feet… We are at loggerheads with Vic in this regard… We want what is best for her…

17.  Addiction:-  Patients often fear addiction. Patients with chronic pain do not and cannot get addicted to morphine. This is proved clinically by seeing patients whose pain is abolished (with a nerve block, for example) when even high doses of morphine used for several months can be stopped immediately with no withdrawal effects. Patients who are terminally ill still often fear that they may become addicted to morphine. They and their families can be reassured. This cannot happen when morphine is correctly used to control their pain. http://www.hospiceworld.org/book/morphine.htm

The amount of medication that Vic takes is a source of great embarrassment to her.  Her biggest fear is that people will think of her as a “drug addict”.  This often prevents her from taking adequate medication. Do not even jokingly call someone who is chronically ill a drug addict…You have no idea what you are talking about!   Quite frankly I don’t care whether Vic is an addict or not…as long as she has some quality of breathing or life as she now knows it.

I wish I could research exotic vacation spots rather than “Tip’s for dealing with people with pain”  But this is part of our journey…