Supporters Means?

05 Aug, 2010 - 5:37 pm

To all the wonderful supporters out there,
Living with cluster headache pain has to be one of the most difficult things one must deal with and for a supporter its a different pain, It's so hard to watch our loved ones going through this without being able to help. A supporter is vital to a sufferer and you're just being there for them is very important. It's not easy being a supporter, and we need each other to stay strong and in the right frame of mind.

This is what supporters means to me:
S. omeone who is loving, compassionate, caring & empathetic
U. nderstanding of the sufferers condition and sympathetic to the
P. ain being experienced, even when they cant help.
P. utting the sufferer first, even when exhausted themselves,
O. rganising medications and Doctor's appointments when the sufferer cannot,
R. emembering that the little things are important and
T. rying their best especially when frustrated & feeling useless.
E. xplaining to and educating others about cluster headaches,
R. ealising that there is hope, together we are strong and can
S. mile with the ones we love when the clusters gone!

But being a good supporter isn't just about understanding what your clusterhead is going through and figuring out how to be there for them. It's also about understanding what you need - and making sure you get it. Lots of sleep. A night out with the girls. A bubble bath. Going out for a walk. Whatever your thing is. Being happy, upbeat, and emotionally stable is probably the best gift we can give to our cluster sufferer. And if you're unhappy it doesn't work. So don't forget to look after yourselves and remember communication is really important! Bless your hearts for your dedication.....you're doing a good job!
Just offering support and cyber hugs. I know the frustration and how you feel. Feel free to post. Feel free to ask. Feel free to rant here when you need to - sometimes it helps.

My best wishes to you all,
Regards Shell

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21 Dec, 2011 - 6:40 am

My daughter's CH has been so much less intrusive since she started on Indecid that she was able to leave home to live with friends. However, if she does get hit with a headache (surely the wrong word - "ache" is definitely not what it is) I get a desperate phone call asking me to come over to her place.

Mostly she does not want me to do anything in particular, maybe fetch some water or something that anyone else could do just as easily, but what she seems to want is to have someone near at hand who actually understands what she is going through. I check that she has what she needs for the moment (usually getting screamed at for my trouble!) and that she also has ready what she will need when she wakes up later, then I just hang around until she eventually goes to sleep.

The fact that she seeks my presence even when there is nothing I can "do" is an indication I think of the appropriateness of the word "supporter". Be there. Stay nearby even when being screamed at. Keep being there for every episode.

Penelope

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21 Dec, 2011 - 9:41 am

Penelope,

With what you have just told us i think that you would be a true supporter, i think that it would be hard to try and explain to her friends what she is going through. So being able to contact her mother and to have you drop everything and go to her is a true testament of the word supporter. I would just say to keep on doing what you do for your daughter.

Matt

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21 Dec, 2011 - 10:49 am

Hi Penelope
For you to understand that an "ache" aint what it is--truly means that you have the real picture of what CHs are all about. Pain--pure and simple. The fact that your daughter turns to you during these times is indicative of how much she needs you as her support, for her support or for whatever reason. It is indeed a long road we CH people face. Along with us goes our family, friends and colleagues. Your daughter is indeed fortunate to have you to turn to. Trying to explain to others what "we go through" falls at times on deaf ears--people do not understand for many reasons--not all unkind reasons--they themselves just are unable to cope with others in pain and withdraw. We often see this or make this to be as "they don't care" when in reality they just can't cope with it. Our support base can thin out as we continue along our road.
Your daughter is indeed fortunate. Stay patient. You are a Mum. My heart goes out to you--I know you must want to take the pain from her.
Heather

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