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New Supporter.... so heartbroken. (Read 145 times)
Ciminosgirl
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New Supporter.... so heartbroken.
Feb 1st, 2017 at 12:08pm
 
Cry
My boyfriend (pfunk as he's known here) has had clusters for over 40 years. We dated as teenagers back in the late eighties. He went off to boarding school and eventually we Married other people and had children. In July 2015 we ended up reconnecting after learning that both of our marriages had failed. I had been in an abusive marriage for 27 years. I never stopped loving him and thinking about him and where he was ect. I told him about the feelings I had held onto for all these years. He voiced he too had held feelings for me. So we decided to give US another chance. Pfunk had been cluster free since December 25, 2013. He was very up front about them and what he goes through when having them. Even though he hadn't had them in sometime he wanted to be upfront about them. As everyone knows they care happen again at anytime even after long breaks. When we talked about them and all that he had been through with them it was evident that the thought of having them again scared him to death. We decided to move in together and he wanted me to understand what was happening if it occurred again. Everything has been great. Together with our blended families we have created a comfortable home for our children and granddaughter. Approximately two weeks ago the devil reared his ugly head and crashed down on Pfunk. No matter how well he explained and how much we talked about it. (and we did often) NOTHING prepares you for seeing someone you LOVE go through such pain. I feel completely helpless. I want to take all his pain away. I want to comfort him. I have a caregiver personality. I want to fix things. Its in my nature to want to make things better. I have never seen someone in so much pain before. It is literally ripping my heart out. He keeps apologizing that I am having to go through this. I'm not the one in pain Sad I told him don't apologize he doesn't have anything to be sorry for. He didn't do anything to cause this to happen. This is one of the hardest things I've ever gone through in my life, however I am committed to being by his side. He told me about being a member of this site a while back. He just started posting again when his clusters returned. I welcome any suggestions as to how I can comfort him or help him get through this. PLEASE. I want to help in some way. He hasn't had the support he deserves in the past from his significant others. So he is happy I am interested in helping in any way I can. I love him beyond words and this scares me to death.  No one deserves to go through this at all.
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AussieBrian
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40yrs of CH and I'm still
no bloody good at it.


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Cairns, Qld, Australia
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Re: New Supporter.... so heartbroken.
Reply #1 - Feb 1st, 2017 at 11:57pm
 
G'day, welcome, and please understand that we love our Supporters. Goodness knows I wouldn't last moments in your shoes and I truly don't know how you do it.

A really important way to help your mate is to sit down with him when he's completely pain-free, hold hands, and ask how you can best help when he's getting hit. I beg you not be offended if he says he just wants to be left completely alone because that accounts for so many of us. ("Touch me, I keel you!!!"). If that's his feelings you'll be giving the world's greatest service by simply running block for him and keeping others away while he wrestles his monster.

Ensure the coffee is ready, Red Bull in the fridge, ice-packs in the freezer, his medications are stocked and used appropriately, and that you love him.

Just as important is you look after yourself because despair, helplessness and hopelessness will serve only to make things worse. Take time out for your own good self to have coffee with friends, go to a movie, get your hair done, and I reckon he'll be the first one to insist life must just go on.

There are many of us here who truly care about our ClusterMates and their Supporters so please jump in an time you please.

Full steam ahead and damn the torpedoes!

Brian down under.
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My name is Brian. I'm a ClusterHead and I'm here to help. Email meanytime at briandinkum@yahoo.com
 
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Mike NZ
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Re: New Supporter.... so heartbroken.
Reply #2 - Feb 2nd, 2017 at 1:30am
 
Hi and welcome as an amazing supporter.

I'd fully echo everything Brian wrote about talking to him when he isn't having a CH about what he would like you to do and not do. We're all different and the right thing can change, so communication is the key.

And what he would like to happen is probably different between when at home and when out in public.

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zanychef
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Re: New Supporter.... so heartbroken.
Reply #3 - Feb 2nd, 2017 at 7:28am
 
Hi Cimino
nothing greater you can do and more helpful than to do what you just did.......ask for help from those who understand Smiley
Lovely how you both after all the years got together again ...heartwarming:)
the condition is isolating encourage pfunk not to forget there's a world out there still and lots of folks who will share the load
zany
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plenty of time to sleep now me headaches aint too bad:)
Ian Howard  
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Ciminosgirl
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Re: New Supporter.... so heartbroken.
Reply #4 - Feb 3rd, 2017 at 2:12pm
 
Brian,
Thanks so much for the great advise. I am definitely learning along the way. At this time I try to grab what I have seen him grab himself and I bring it to him. I am just so concerned about him right now. He does want life to be as normal as possible. I can tell that you all truly care and its very appreciated.
Thanks again,
ciminosgirl
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Ciminosgirl
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Re: New Supporter.... so heartbroken.
Reply #5 - Feb 3rd, 2017 at 2:14pm
 
Thanks so much Mike NZ. All the kind words and advise have been so helpful. I can't thank you all enough for all the support.

Thanks again,
ciminosgirl
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Ciminosgirl
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Re: New Supporter.... so heartbroken.
Reply #6 - Feb 3rd, 2017 at 2:20pm
 
Zany,
Thank you! I try.
He means everything to me and I want to help in anyway I can. We think so too. We really feel like we are finally where we are meant to be. Together! I have wanted this for so many years. It means more than we could ever explain that so many people care.

Thanks again,
ciminosgirl
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eczimmerman
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Re: New Supporter.... so heartbroken.
Reply #7 - Feb 7th, 2017 at 1:43pm
 
I'm sorry to hear what you're going through. I am going through a very similar thing as my husband of 2 years just started a cycle. This is all new to me and I just want to be able to help! It's so heartbreaking to watch. Wishing you all the best!
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Ciminosgirl
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Re: New Supporter.... so heartbroken.
Reply #8 - Feb 14th, 2017 at 11:48am
 
Thank you so much! I am sorry to hear what you are going through as well. This site has been very helpful, supportive and informative. Its hard to explain to people who have never seen it just how bad it is. I'm sorry I'm just getting back to you, but it's been a rough few weeks. Unfortunately it continues. ;('''

ciminosgirl
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Mike NZ
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Re: New Supporter.... so heartbroken.
Reply #9 - Feb 14th, 2017 at 11:51pm
 
Ciminosgirl wrote on Feb 14th, 2017 at 11:48am:
Its hard to explain to people who have never seen it just how bad it is.


Remember that most people who have CH have never really seen anyone else with a CH to see what it is like from the outside.

Whilst there are multiple videos on Youtube and similar, I (and others) find them painful to watch and almost impossible to see all the way through. I've no idea how supporters do what they do, time after time.
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jon019
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Re: New Supporter.... so heartbroken.
Reply #10 - Feb 15th, 2017 at 1:00am
 
Mike NZ wrote on Feb 14th, 2017 at 11:51pm:
Ciminosgirl wrote on Feb 14th, 2017 at 11:48am:
Its hard to explain to people who have never seen it just how bad it is.


Remember that most people who have CH have never really seen anyone else with a CH to see what it is like from the outside.

Whilst there are multiple videos on Youtube and similar, I (and others) find them painful to watch and almost impossible to see all the way through. I've no idea how supporters do what they do, time after time.



Ummmm....YEAH...that pretty much sums it up!  Watched Chuck video once...can't handle anymore. I've had thousands of hits...they recede in my memory to "jeez, that was bad" and kinda blur together....but the very few times I was caught witnessed...DAMN...those are burned in my brain
in a detail that surprises and amazes me...

YOU GO GIRL...I couldn't do what you are doing....the LIGHT at the end of the tunnel...yup...THANK YOU!

Best

Jon

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I had the blues, so bad one time it put my face in a permanent frown. You know I'm feeling so much better, I could cakewalk into town.      Taj Mahal
 
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