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Message started by Mattrf AKA BigMatt on Jan 11th, 2010 at 2:10pm

Title: My own little pity party.
Post by Mattrf AKA BigMatt on Jan 11th, 2010 at 2:10pm
I just feel the need to vent a little, so this (SUNCT) cycle started last January so I am at the one year mark right now, my first cycle lasted about a year but since it was the first cycle and I was not correctly diagnosed I cannot say for certain exactly how many months it really lasted but it was about a year. I had about a year off with no pain or symptoms after the first cycle before my second cycle started. The second cycle lasted about two years but at least I got correctly diagnosed but found out that there are no treatments for me other than pain medication to help me be able to function and keep my job, at the end of the second cycle I was once again rewarded with 14 months of PF time but that ended in January of 09. So here I am at the one year mark wondering if this will be a one year cycle and I am close to the end (I hope) or am I only half way through or worse, could this one last three years or could I be going chronic?
I try hard to look at the good things I have to help me keep my sanity, I do have a great woman that I love and who even though she has not known me without pain has stuck with me and loves me, not sure how I go so lucky but glad I did. I would recommend EHarmony to anyone that is thinking of looking for someone, it sure worked for me and on the first shot.
I get really bummed out when the pain keeps me from doing what I want to do, I wanted to get out this weekend but was just to wiped out from the constant pain I have to endure, we did go to a party and I survived it but I want to enjoy these things not just survive them. I really feel like my girlfriend is getting short changed, I try really hard to take good care of her and do things for her but I know if I was not in pain she would get much more from me than I am now capable of giving. OK I know I am having my own little pity party here but just can’t help it right now. I just want to wake up in the morning and not have the first thing I do to be to reach for a pill bottle just so I can start my day, I want to have energy at the end of the work day instead of only being able to think of how nice it will be to get home and become a coach-potato just so I can recoup and get ready to do it again the next day.
I guess it all boils down to fear, I am afraid that this will not end and give me the break I so desperately need right now, I am also afraid that the woman I love may get to the point that she decides she would rather be with someone without such a problem and the bottom line is I would not blame her one bit if she did, I am not sure I would be able to sign on for such a relationship, I just hope she can.
I know it is what it is and I have to deal and have no other choice in the matter but I know that the pain effects me in a negative way sometimes, I may have even damaged my relationship with my best friend due to snapping at someone without even knowing I was snapping at him. He is still pissed at me, I apologized and tried to explain to him it was not on purpose and I would never do something like that on purpose and really do value his friendship. I am just waiting and hoping he cools off and still wants to be my friend, I know most of you can talk about relationships you no longer have because of this crap we have to deal with and yes maybe if a friend cannot deal with us then they are not that good of a friend in the first place but I do not have a lot of people in my life I call close friends and he is one of them and one I do not want to lose.
Thanks for listening I wish you all some PF time and hope you have people close to you that understand what you are going through.
  :-/

Title: Re: My own little pity party.
Post by Iddy on Jan 11th, 2010 at 7:54pm
Thinking of you Big Matt

Stay strong

Wishing you all the best :)

Iddy

Title: Re: My own little pity party.
Post by Callico on Jan 11th, 2010 at 8:19pm
I've been where you are, and I know the fear it can bring.  I'm not that familiar with SUNCT, but pain is pain, and when you are dealing with it it can totally sap all of your energy and your drive.  The fear it brings is another totally debilitating issue as well.  It brings you to the point you are afraid to do anything, and you find yourself retreating into a shell that no one can break into.  I know it is easy for me to say, but you have to find a way to overcome the fear.  Take one day at a time.  Live it to the fullest, and determine that you will LIVE until you die.  When you can come to that you can deal with the other issues. 

As to your friend, you've tried to receive his forgiveness.  Yes, you hurt him, and the hurt will remain, but if he is truly a friend he will overcome the hurt.  Do all you can to repair the friendship, but don't let that rule your life either.

Jerry

Title: Re: My own little pity party.
Post by Mattrf AKA BigMatt on Jan 12th, 2010 at 11:13am
Thanks Jerry, I have sent him a couple emails now that I remember more and told him yet again I am sorry but he does not read his email very often so not sure if he has ready them yet. It does suck he has seen me in a lot of pain and has heard me talk about what I am going through hundreds of times yet does not seem to be able to understand. I guess the only people that can truly understand are those that have suffered the pain and I would not wish that on him even if it means losing his friendship.
I do try to live for the moment and not let this rule my life but it is hard sometimes but I keep trying it’s all I can do.

Title: Re: My own little pity party.
Post by Jackie on Jan 12th, 2010 at 5:52pm
I'm really sorry you're having such a hard time.
I understand the process having lived with a clusterhead for years.  Pain makes people tired, depressed and a bit angry.....it gets hard on one's nerves.  Just continue to do your best and maybe count to 10 before you speak....if it's a touchy situation.

Good Luck to you and wishing you better days....they'll come.

Title: Re: My own little pity party.
Post by Charlotte on Jan 13th, 2010 at 10:23am
hi Matt. long time no see.

SUNCT is on my plate too, & one thing that has helped is botox treatments.  The SUNCT & PH respond to it immediately, for me, and the CH takes about 2 weeks.

It might buy you a little relief if your neuro wants to try it.  It does wear off & needs to be repeated.

My neuro is using it for CH, but it also helped the other short headaches.

it doesn't make you pf, just better.

Charlotte

Title: Re: My own little pity party.
Post by Mattrf AKA BigMatt on Jan 13th, 2010 at 11:27am
Thanks, things have gotten a little better, my friend called me last night and excepted my apology and promised if I did something like this again he would call me on it right away instead of just getting pissed off at me and not saying anything. I think he understands that I can’t help it sometimes and that it is not on purpose, I told him it is OK to call me on it and that I won’t get pissed at him since I know I do it but can’t tell sometimes. Sure made me feel a lot better after talking to him, this crap has done way to much damage to me already and I just don’t want it to do more and costing me a best friend is just not acceptable they are way too hard to find.  ;)

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