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Title: Supporting is the toughest job.............. Post by Leesa on Sep 13th, 2004, 2:02pm youll ever love. The reason I say this is due to the fact we support the CHer in our life and we love them with all our hearts. Its never easy to sit by and watch the person you love hurt so bad. Its never easy to just sit by as they rock back and forth as they yell and scream due to the pain, or claw at their eyes. It hard but we are fighters and will fight to the end. We take a deep breath and keep rollin along. We fight because we love our clusterhead and we want the pain to stop. We yell, scream and cry. But we are not alone. We have folks who REALLY do know what we have to deal with. I AM AN ARMY OF 1! I WILL not let my clusterhead give up or give in. Not on my watch. Supporters have nerves of steel and hearts of gold. Its what we do! We ARE the supporters. The few and the strong! Fighting the good fight, Leesa |
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Title: Re: Supporting is the toughest job.............. Post by Ree on Sep 13th, 2004, 9:23pm You are so right...........ree |
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Title: Re: Supporting is the toughest job.............. Post by YYZBlonde on Sep 15th, 2004, 10:26am Hi! I'm new to the site --well posting anyway. I don't feel so wonderful or strong or anything and I'm feeling really bad about it. I don't deserve to be called a supporter since I can't seem to keep it together.... My hubby has had clusters for 19yrs. We've been married 5yrs together 7 almost 8 now. I've been through cycles and the last one before this was just pure hell. This one(he's in cycle now) is shapping up to be the same. Nothing is working---nerve blocks, triptans, pred, ice, O2....nothing. We are waiting on sansert now....another week to 10 days off since the US doesn't make it anymore. Anyway, the screaming and yelling to wake me up in the middle of the night is aweful. The hateful phrases or names he uses at me hurt really bad---I know it's the beast talking but trying to remind myself that gets harder. I feel helpless and run down. I'm afraind to go to sleep wondering if he's gonna scream at me in an hour or 2. We've only been through 1 month with 3 more to go in this cycle. How do I hang on??? He says today he leans on me for strength since I am always so strong --his rock always--and I have to hang on. How? I'm exhausted and emotionally worn out. Working, fighting his ex-wife, shuttling the kids to practice and games, running for ice, running for O2 mask, getting meds, going to the pharmacy, keeping the house semi decent, sitting there helpless.....how do I do it. I know I sound so selfish...which is not at all ike me...but again...I'm afraid this will be like the last cycle. A virtual nightmare. I know it will end at XMas time but in the meantime...how do I stay strong and stay my always chipper and always caring and compassionate self? How do I get to the numb state to carry me through? I am so sorry to dump on you all!! I really am. I just am in a bad spot right now and I need someone to kick my butt into gear and help move me forward. Again....so sorry!!!!! I am not the supporter I should be........ |
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Title: Re: Supporting is the toughest job.............. Post by Margi on Sep 15th, 2004, 11:07am Hi YYZ - you from Toronto originally? (Sorry, it's the travel agent in me recognizing the airport acronym) Well, first of all - you need to talk to hubby between hits. He does NOT need to call you names - that's abuse. Sounds like he needs to learn some relaxation techniques. My hubby has been a clusterhead for twenty (mumblemumble) years now and, trust me - he's learned the hard way that his pain reaches a MUCH higher level if he allows himself to freak out. He forces himself to stay calm and sits there with his O2 mask on, breathing evenly. Seriously, that's been his biggest defense against the beast - teaching himself serenity. It is VERY difficult for them to achieve this but so much worth the effort it takes. You say O2's not working for him? Non-rebreather mask? High flow rate (at least 10 lpm)? Without those two conditions - it probably won't work. What about trying melatonin for him? That can help him get through the night, unattacked. Or Dramamine. Or Benadryl. The middle of the night attacks are the ones that rob all of us of quality of life. Somehow it's easier to deal with the daytime attacks if we can build up our sleep bank. As for you - make sure you MAKE time for yourself. Even if it's just a bubble bath behind closed (locked) doors for 20 minutes. Meditation. Solitude walking. Aerobics. Anything to distract and recharge yourself. It's real easy to lose yourself in the process of being a cluster supporter. Do NOT try to do everything yourself though - I'm back to talking about the name calling again. THIS one, you gotta step on. We can forgive them for not being able to keep up with the household chores when they're in cycle - but we do have to draw limits. He does NOT have the right to hurl insults at you - let him know that loud and clear, ok? Let him kick the hell out of a pillow if he has to vent, but make sure he knows it's not ok to direct ANY of his anger towards his "rock". Sorry, I get on my soapbox when I see this happening and, believe me, you're not the first supporter to report this. Big hugs - always here if you need us. I'm at moxie_miss@hotmail.com if you'd like to talk off the board as well. Hang in there lady - you're one of many now. |
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Title: Re: Supporting is the toughest job.............. Post by YYZBlonde on Sep 15th, 2004, 11:52am Hey Margi! Thanks for your kind words! I just felt so selfish and rundown. Am better for now....it's a rollercoaster as you well know!!! In an hour I maybe crying...who knows. I'm a huge Rush fan(Canadian rock group hence YYZ reference---it's one of their infamous songs among fans). Anyway, the O2 was working at 10-12ls but for some reason it hasn't the past couple of really bad attacks. He has a face mask but I don't understand what rebreather means (sorry)..... He regrets his out bursts later but if I even exhibit a hurtful look during a headache....forget it. I will mention the trying to remain calm idea.....he's not like that even out of cycle. But we shall try. I am willing to try anything. I will also try for myself. I was really upset by his attitude if you will during an attack. I wasn't sure if it was common and I should just over look it....didn't seem fair but again....the beast isn't fair. I would really like my husband back..... Thanks again!!!!! I really appreciate knowing there are others there to help methrough the really rough spots. |
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Title: Re: Supporting is the toughest job.............. Post by Margi on Sep 15th, 2004, 12:00pm You're not being selfish at all, YYZ. Rundown - hell yeah - we all get there. Sadly, this is more common that most folks care to admit. I chair the Family Services Team and I've counselled hundreds of supporters on this very issue. You're certainly not alone in this! But supporters do have to set rules too. Have a chat with him and explain to him that name calling crosses the line. That you will do anything else he needs while he is under attack but that you will NOT allow yourself to be degraded or bullied. My heart aches for you having to mask your reaction to hurtful words during an attack. I'm sure there isn't a supporter out here who can't relate to that. But there are also a lot of us who are living proof that it doesn't have to be like that. OK? Hear me? Also, have him visit here. It will help him IMMENSELY to know he is not alone with what he goes through. These clusterheads here will drop everything to help each other and are extremely patient at teaching patience. The non-rebreather mask is detailed in the Oxygen button to the left here - there's a picture of one in the link. It's also very important that he gets on the oxygen at the first sign of attack - sometimes that's impossible for the attacks that wake him up during the night, since they usually are still able to sleep through that phase. Melatonin might be a really good option for you both. |
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Title: Re: Supporting is the toughest job.............. Post by YYZBlonde on Sep 15th, 2004, 1:15pm ok...I see what you mean on the mask. His doesn't have the bag. I'll call the comapny who delivered it to us. I will discuss boundary issues hopefully tonight before any attack insues. I am finding new strength here. Thank you Margi! I am forever in your debt. He does visit the message board but I'm not completely certain he understands how to use it. I will teach him and he can log on on his own. Now Melatonin can help both he and I or just him??? What is the best dosage??? Again, a million and one thanks for talking me through this one. I will be on the board and hope to help others too.....even when we get out of this cycle. For now though, I must work really hard to be strong. And I get migrainse and chronic daily headaches. We are quite the pair. Again, thanks!!!!! |
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Title: Re: Supporting is the toughest job.............. Post by synergy on Sep 15th, 2004, 1:19pm Hi guys - us surpporters are really tough cookies aint we! Your not being selfish or cruel in anyway way hun - but i agree with margi, he does not need to name call no matter how bad the pain is. Marc has only been verbally abusive in one attack, i walked out the bathroom and let him get on with it on his own. It hurt really bad to just sit in the other room hearing him in pain, but he never got aggressive with me again. Hang in there girl, you are not alone in this. We are all going through the same i was in the same place you are now. Marc is now on O2 therapy and doing well with it. Make sure you check that he has the right mask and using a high flow regulator to achieve the right results. If you have any probs then let us know! love sarah xx :-* |
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Title: Re: Supporting is the toughest job.............. Post by FZfan on Sep 15th, 2004, 1:24pm margi has given you some great advice. I really can't add much to it except to back up what she says about the name calling. I am not a supporter, I am a clusterhead. Even during a raging kip-10 attack I have NEVER hurled an insult at a supporter. As a sufferer I can see NO excuse for this behaviour. Oh, I will scream my head off and flop around and otherwise look or act crazy, but even in the grips of an attack the only thing I am hurling insults and curses at is the beast itself. I actually prefer to be left alone during an attack and my supporter knows this. But she knows this because we have talked about it. Talk to your husband. Maybe all he really wants is to be left alone during an attack. If he can't control the name calling, then maybe he is better off left alone during an attack. Otherwise, it sounds like abuse to me. Also can't stress enough the importance of a non-rebreather mask with high-flow rate o2. Anything other than a non-rebreather mask WILL be less effective. Hang in there. Even if he doesn't show it, your support is extremely important. |
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Title: Re: Supporting is the toughest job.............. Post by Margi on Sep 15th, 2004, 1:43pm on 09/15/04 at 13:15:43, YYZBlonde wrote:
no, he should take the Melatonin. If he sleeps, YOU sleep, right? There has been quite a lot discussed here about Melatonin. Type it into the search engine above or go to the medications area and check for dosages. I believe it starts at 3 mg and ramps up to 6 mgs but you should check first. If you can't find it, post a message over there - there is bigger readership on that area than there is here at the supporters' sections. And...by all means - let hubby be alone during attack if that's what he wants. My husband MUCH prefers that. In fact, I think, the only time he has gotten grouchy with me during an attack has been when I tried sitting with him and firing questions at him about what I could do to help. ::) Stupid supporter mistake on my part. Most sufferers DO prefer to be alone as FZFan says here. Sounds like maybe you man might fall into that category? In my house, when an attack hits, Mike goes to his O2 tank in our computer room and I stay in the living room. Always within earshot but never in his face. It works much better for us that way. I know he'll call me if he needs me - but that does take time to learn that trust. It's hard to not be there, but you have to let your sufferer make this particular choice. |
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Title: Re: Supporting is the toughest job.............. Post by YYZBlonde on Sep 15th, 2004, 2:47pm Again....the support is fabulous! I feel better just hearing your words of wisdom. I will discuss what he wants to do. The O2 is in our bedroom so if he has an attack....I get startled awake by him yelling for more ice or why I didn't know he needed ice or whatever. Hmm......will work on communication. I don't say a word. I have learned that the hard way too. I keep the big mouth shut unless spoken to. I will work on that mask. We just have a plain face mask. I'll bet I can get the bag at the pharmacy. He is up to 10-12litres or psi thingies or whatever that is. I'll check into melatonin. Anything..... I am sleeping if and when he does. At least he can try and nap at homein the afternoon.....I'm stuck at work from 7am-6pm...considering travel time. Well, I've gotten terrific feedback and much support. i am very tired but willing to try another night. I'm scared but it's what we need to do. A million thanks!!!!!! I can't express it enough. |
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Title: Re: Supporting is the toughest job.............. Post by Margi on Sep 15th, 2004, 5:11pm Please don't forget to let us know how it goes, YYZ - if you try the right mask and/or the melatonin. I'm thinkin' you probably won't be able to get the right mask at the drugstore, more probably you'll have to go to the O2 supplier directly. At least that's the way it is here in Canada. You truly are a great cluster supporter - and that's evident just by the fact that you care enough to come here and ask for advice. Keep up the great work and please do keep in touch! |
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Title: Re: Supporting is the toughest job.............. Post by FZfan on Sep 16th, 2004, 8:17am on 09/15/04 at 13:43:34, Margi wrote:
Sometimes I am amazed at how similar some things can be. That is the exact description of what goes on in our house. I'm on the o2 tank in the computer room, my wife is in the living room. For those few attacks when o2 fails, I bolt to the basement to fight it out. Non-rebreather masks are available at med-supply shops in the US. I bought mine for 5 bucks last February. Before I got the non-rebreather I used a regular mask and the results were disappointing. After coming to this site and learning I had the wrong mask (and the wrong lpm) I got a high pressure regulator and the non-rebreather mask and the difference was startling. With a non-rebreather mask I am able to abort over 80% of my attacks with nothing but o2. As has been said on here many times, it truly is liquid gold. Best of luck, let us know how it's going. |
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Title: Re: Supporting is the toughest job.............. Post by YYZBlonde on Sep 16th, 2004, 9:58am Ok, I did chat with him on what he wants me to do during an attack and he wants me right there with him--I can do it and remain strong ---self talk will help. We had another attack last night and he was decent to me. Though I have to admit, after we awoke after only 1 hour of sleep, staying up for another 2.5 was more than my body could do and I had to go to sleep. I think he's mad now cuz his attitude is aweful today. He fell asleep right after me so I guess it wasn't so bad. Called dr this am and he is now going to use Lithium and go off of pred since it's just not working and neither did the triptans. We are desperately awaiting sansert but the Canadian pharmacy is taking forever to get it to us---the US doesn't manufacture it anymore. UGH! Anyway, I am going to call around and get that mask! Also gonna check out success rates for Lithium. I pray today isn't going to be an ugly day--though hearing his attitude...I'm a bit scared...... This rollercoaster ride is exhausting. My emotions are all over the board. Thanks guys!! I can't say it enough. I'm just a mess...... |
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Title: Re: Supporting is the toughest job.............. Post by E-Double on Sep 16th, 2004, 10:30am You are all AMAZING!!! HUGS and THANKS :) Eric |
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Title: Re: Supporting is the toughest job.............. Post by Margi on Sep 16th, 2004, 11:14am oh, ok - I didn't catch that he was on pred. Nasty, horrible stuff. It does help break a cluster cycle, but it really can mess with their moodswings. I bet things improve drastically for you both once he's off that stuff. Make SURE he does a taper though - NEVER quit it cold turkey!! As to the sleep guilt - know it well. Mike never gets upset when I fall asleep but I feel so damn guilty if I do. There comes a time though that we do have to recharge our batteries and your body just takes over. Nothing you can do about it. Did you try melatonin? It, from my limited knowledge of it, can take a few days to kick in. But I think that #2 on your list of Things That Suck right now is both of your sleep deprivation. (#1 is the Pred, honey - trust me). Sleep deprivation magnifies everything. Even if he won't take it, you should try to get a good night's sleep right now. That really does make you stronger to deal with things the next day. I know it's hard but self-preservation has got to kick in at some point. You'll be bigger support to him if you can concentrate and not falter because you're too tired to think. What about moving the O2 tank OUT of the bedroom? Would that work for you? You need your sleep. |
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Title: Re: Supporting is the toughest job.............. Post by Jackie on Sep 16th, 2004, 1:02pm Hi YYZ..... You are doing a great job, Sweetie. Supporting can be a tough job sometimes but well worth the effort. Hang in there and like Margi tells us.....take a bit of time for yourself....even if it's just one of Margi's suggested bubble baths.... :) I'm hoping that once your hubby is off the prednisone some of the 'bad attitude' goes away. My hubby was on it for years and it didn't do much for his disposition. Keep us posted, please. Good Luck, Jacks 8) |
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Title: Re: Supporting is the toughest job.............. Post by YYZBlonde on Sep 16th, 2004, 1:16pm Good...I am hoping the reduction of prednisone is going to help our attitude(yes we are tapering per dr request). Hey, do you think the Lithium will kep him even? Any thoughts on that one? I am going to attempt something for myself tonight...shopping. Phew...am tired though. Margi....didn't try melitonin but I did tell him about it. For some reason he didn't want to take anything during the attack last night except O2 that really didn't help?? I think it's the exhaustion. I will keep mentioning it. I'm glad to know I shouldn't feel guilty for wanting sleep. I just couldn't even stand up at one point. Now we are suppose to go to a reunion and wedding(my sister's) this weekend. I am so nervous and scared. I am calling the caterer today to make sure I can leave the ice packs in a freezer while at reception. They events are 2hrs from home so if I rest up enough and we need to bolt home, I can drive it. Ahhh...but I just need some rest. Ok, I'm off to work again for now. You are the very best!!! Especially you Margi. I feel better equipped now. Lots of love!!!!! YYZ |
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Title: Re: Supporting is the toughest job.............. Post by Leesa on Sep 17th, 2004, 2:30pm YYZ, listen to Margi and Jackie hun they have had to deal with this alot longer then most of us here and they know the name of the game. We are here for you when ever you need us. Let us know if we can help. Thats what we do round here. Margi is SOOOOO right about the Perd so be very careful. As for you young lady, do what ya have to relax. And rem. your not alone gal!!! PF wishes, Leesa ;;D |
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Title: Re: Supporting is the toughest job.............. Post by Sean_C on Sep 20th, 2004, 10:33pm on 09/13/04 at 14:02:09, Leesa wrote:
Leesa, you are a doll. You are everything. You must make him so happy that your there for him like that. I have to let my wife read this thread. I know she goes through hell the same as you guys do. She gets up in the middle of the night with me, she stands by the open window with me in the frigid air even though she's freezing herself. She assures me I'm not gonna die even though I tell her she doesn't know what she's talkin about. I love you guys, supporting a clusterhead is tough.................loving one must be hell. Thanks for all the giving you guys do for real Sean........................ ;;D |
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Title: Re: Supporting is the toughest job.............. Post by Leesa on Sep 21st, 2004, 3:03pm Sean, thanks but ya know its what we do and why we do the things we do. Its only out of pure 110% LOVE. Cuz lord knows with out CHer in our lives we wouldnt be the supporters we are and besides WE LOVE OUR CHer's!! Leeas ;;D |
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Title: Re: Supporting is the toughest job.............. Post by Ree on Sep 27th, 2004, 8:14am Wow I am so proud of the support you guys are giving here. Margi. You are an expert honey... and all of the others here in this thread you should be proud... Sean C. You are a lucky guy to have such a beautiful loving wife. It is extremely difficult to watch someone go through this, as Leesa says especially when you love them so much. I can't add anything you guys haven't said. Jackie you are right about the prednisone. I hate that drug because of the side effects and it does make you edgy. But there is NO EXCUSE for ABUSE!!! Hopefully this thread will help YYZ... Great work all................. love ree |
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