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I feel guilty (Read 2119 times)

Eva

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I Love CH.com!

Posts: 4
Montreal
Gender: female

I feel guilty
Jul 4^th, 2008 at 12:43pm

Hello everyone,

I just found this site and have been reading a lot of the messages on this board, including those that explain how to be a good supporter. My boyfriend (with whom I now live) has had CH for over a year now, but it seems to be getting worse as the months go by. He has yet to see a neurologist (next week), but is taking medication.

Anyway, I am writing because I feel like the lousiest supporter ever. When he has his daily crisis, my boyfriend often needs me there, but I feel... mmostly aggravated by his words and behaviour in those times. He will ask me to talk to him -- as though I could pretend nothing is happening, or as though I could talk by myself for over half an hour --, or he recalls arguments we've had, or, when I try to leave him alone, he blames me for leaving the room. When he tries to speak, he usually says things like “this is ruining my life”, “it will never end”, etc. Or he screams.

I do love him, but I do not feel I am supporting him adequately. I have tried to talk to him about it a few times, but he gets very defensive and says he can't control what happens when he has an episode. It's as though whatever these headaches make me feel, and whatever way they affect my life, will never be important compared to the Pain he is feeling.

But mostly, I feel pissed off that every evening is lost, that I now dread to either be home or to ask him to join me when I go out. I have had to drag him home (walking, yes) in this zombie-like state pretty often, as well as explain to other people what the matter was with him. All this has made me both fearful and angry. And I feel... so, so guilty about my feelings.

If anyone has any advice, I will gladly take it. How can we get over this? How can I stop feeling angry/guilty and be more sensitive/supportive? Thank you.

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Charlotte

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Posts: 2385
Patterson,California
Gender: female

Re: I feel guilty
Reply #1 - Jul 4^th, 2008 at 2:36pm

I don't know how to explain it, but thanks for being there.

My friend Jacki from work often explains things to people about me. I'm usually busy dealing with my own little world, and she calmly says "reb bull is like medicine" when I slam a can and toss the empty in a few seconds.

I just know you guys make our lives easier.

Charlotte

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Cathi_Pierce

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Re: I feel guilty
Reply #2 - Jul 5^th, 2008 at 8:09am

Eva, From what I can see, you guys are pretty normal...........guilt, aggravation, pain.these are all things the Beast loves to load onto you....of course, that is IF you allow it! GUilt is a waste of time and energy, so, please, let thst go. For starters, your boyffriend really DOES suffer a huge amount of pain during a hit. Beleive that. As sufferer, he could very well say things, out of pain, that he really doesn't mean. YOU are there, obvoisly, to help him. Every sufferer has a different way of dealing. Give him time and space to deal, and, when things are mellow, ask him how you can best help him during a hit..then, do it. You can help him by bringing him here, to chat with other Ch'ers, or, if he doesn't care for the Internet, read for yourself.educate yourself enough to add more to his arsenal. There are preventive meds and abortive meds for your BF. There are also simple helps, like Red Bull, as Charlotte mentioned..........even 02 is a HUGE help to many, in keeping the beast at bay.
Take care of yourself, Eva. Remember to take time out to relax and recharge....also, you ned to know, life iswhat you live when the beast is NOT on your backs-make the most of it.
Get this man to a Neuro, get the DX, and then, everyone here can help you both work together to keep the beast at bay.
Good for you, for being there, Eva!
The light's always on here!
Cathi Kiss

Life is not measured by the number of breaths we take, but by the moments that take our breath away.

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DonnaH_again

Ex Member

Re: I feel guilty
Reply #3 - Jul 5^th, 2008 at 9:55am

Living with cluster headache pain has to be one of the most difficult things one must deal with.

I've been a sufferer and am now a supporter for my adult son. When he still lived at home (and which he also did for several years with his little son), I could see the hit coming on and I knew it was time to distance myself from him.........not too far but out of sight. His temper would just let go and he wanted and needed to be left alone.

It sounds like, from what you said, that your BF wants you next to him when he gets a hit. When he is not in pain, talk to him about how you feel. His actions are not unusual, but it might be best for you both if you were not in the same room at this time. If he needs something, he can call you, but unless he really needs you right there, see if you can arrange to be in another room. Just remember that what he does say shouldn't be held against him as he doesn't mean it. The pain really is unbearable and lashing out is about all he can do...yes, and screaming too.

As far as quilt is concerned......we all have felt this way. We feel helpless, a little scared, some feel angry, and we don't know what to do. None of what you are feeling is new to us.

Educate yourself with the wonderful information on this site. That will be your greatest weapon against the Beast. This supporters section has a lot of really good info for people seeking answers. The medical information is a must. Many sufferers have put their experiences together and have come up with a pretty good list of things that work for most people.

Before your BF goes to the doc, he should also educate himself so that he understands what he is dealing with. This is of the utmost importance, or he may not receive the medication that he needs.

You are now considered part of our family...welcome home. Cool

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Eva

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Posts: 4
Montreal
Gender: female

Re: I feel guilty
Reply #4 - Jul 8^th, 2008 at 10:12am

Thank you for your kind responses.

It seems I had a breakthrough of some kind after I posted and read your responses last week, and I tried to communicate as best as I could with M., my boyfriend.

Reading through this site, as well as other documentation, I realized that we had both been living... as though it would just go away by itself. We were unprepared for the attacks, even though we could both have written the script of how and when they would happen.

One part of the problem was that my self-definition had never involved being a “care-taker”: I am a young professional with no children, and I am happy that way. Just like M.'s self-definition had never involved “being sick” or “having an illness”. The pill was hard to swallow, if I might say so, when I began to realize that I had a choice to make.

And I made it: to the best of my abilities and energy, I will stick with this man, and try to help whenever I can.

After I posted last week, I went out and bought energy drinks (we did not even know about that!). And well, they helped. I encourage M. to drink a lot of water.

I also told M. about my difficulty to talk by myself while he's suffering. And we came to a compromise: I read to him from a book. In fact, I love reading aloud, and he says it's something that soothes him.

I think we still have a lot of ground to cover before we are truly prepared for the attacks -- but we'll be working on that, and I plan to follow all the good advice given here.

Thank you so much, Charlotte, Cathi and DonnaH, for your friendliness and your support... it means the world to me.

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seasonalboomer

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CH messes with my isness

Posts: 2517
Charlotte, NC
Gender: male

Re: I feel guilty
Reply #5 - Jul 8^th, 2008 at 1:34pm

Don't feel guilty. You've done nothing wrong and none of the feelings you have are wrong.

As for your BF.... We all grow up differently I guess. I can't stand to have anyone around when I'm getting hit. I completely withdraw and go hide. Don't talk to me. Don't try and help me just let me get through this... pretty much summarizes the situation for me (and many others).
It works for my wife and I and while she has seen my CH and is affected by the changes it presents to my mood and some of our activities, I make a special point of trying to minimize the affect on her.

I'd say that BF needs to suck it up a little and understand the effect he is having on those around him by being so needy. It's not your fault he has this condition. It's not his either, but it is his condition to manage.

So absolve yourself.

Scott

Scott

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Eva CH.com Newbie Offline I Love CH.com! Posts: 4 Montreal Gender:	Re: I feel guilty Reply #6 - Jul 12^th, 2008 at 10:54am Thanks, Scott, I'll keep that in mind! There are, indeed, times when there is simply nothing I can do. I think it needs to be accepted. Eva
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sandie99

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it - inspite the pain!

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Finland
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Re: I feel guilty
Reply #7 - Jul 13^th, 2008 at 4:13am

Eva,

welcome and thank you for being there for M.

I'm a sufferer myself and you supporters mean the world to us.

I'm so glad to see that you and your BF have created your "cluster kit" - what do when the devil arrives. That's wonderful.

Energy drinks are big part of my ch treatment, so I'm glad that they help M as well.

And do recall to take care of yourself, too.

All the best & PF days to M,
Sanna

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thebbz

Ex Member

Re: I feel guilty
Reply #8 - Jul 14^th, 2008 at 12:47pm

Dont feel bad in any way.
Quote:

says he can't control what happens when he has an episode.

This is total bullshit. He just doesn't have the knowledge, and the tools to beat the demons ass.
You can control the beast, but you need the knowledge, a treatment plan, and a good doc. You can work through it and live your life somewhat normal.
I am sure he, feels he cannot control the beast. Get him on here. Get the proper treatment and a plan.
The Lord helps those who help themselves.
all the best
thebb Wink

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