Posted by Margi (207.228.64.77) on December 02, 1999 at 12:49:11:
In Reply to: Things That HELP in addition to drugs - VERY long article posted by gary (have been CH patient for 30 years) on December 02, 1999 at 00:24:56:
Excellent as always, Gary, but may I just add to your "Coping with the Cluster Lifestyle" from a Supporter's point of view?
Supporters, when your sufferer is BETWEEN ATTACKS, ask them how they want you to help them. Do NOT be offended if they tell you they want you to leave them alone. Ask them if they want you to bring them ice bags, pain pills, cold cloths, etc. Do they want you to turn down the lights, noise, etc.? Do you need to get the kids/dogs/in-laws outta there? (the answer to the in-laws is most usually 'yes' LOL..)
I stress BETWEEN ATTACKS - cannot stress it enough. The LAST thing a sufferer needs (my sufferer anyways) is to have questions fired at them while they are trying to focus on the pain and stay calm while under attack.
Now maybe it's just me, being the "mom" that I am, but try to protect your sufferer from the outside world....if you have to leave an event because an attack is coming on, don't make a big deal of it. That will only add to the guilt your sufferer is already feeling and therefore make the ensuing attack worse. If you are out in public and can't get into a private setting, try to shield him/her as much as you can from questions during the attack. This may sound really over-protective and anal, but you will probably get a big thank you once the attack has passed.
Lastly, develop an armour. Do NOT be offended by words used during an attack, consider it almost a devil-like possession if you have to - the sufferer really can't help the anger that boils up inside them when they are withstanding yet another barrage of pain. Remember that the attack WILL pass and your loved one WILL return to normal. The person that they become during an attack is NOT the person they normally are. Would YOU be?
It's so hard to imagine this pain - we simply CANNOT comprehend it. But we can try to understand and sympathize with it. Our sufferers canNOT help their emotions during an attack and we need to offer them the strength that they lose with CH.
It is a totally helpless feeling to be a supporter sometimes and CH has a completely invasive quality to it. Our best defense is to fight it as a team and lean on each other when we need to.
As always, please feel free to email me directly if I can help.
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Margi