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BARNEY
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Posted: Sat Mar 28th, 2009 04:55 |
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Tell us how your doing with your mate on MP.
HANG IN THERE, WE WILL MAKE IT!!!Barney
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Alayne
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Posted: Sat Mar 28th, 2009 10:22 |
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Can we call this forum something like "Significant Others, Family and Friends"? Or something like that? Just saying Spouses takes away from others who are involved and might like to share.
Also, I think it would be nice for the "others" to be able to share anonymously if they'd like - in case they're uncomfortable speaking candidly. Some of us are not only more accustomed to "talking" on a computer, but also also more used to being candid about certain subjects. It should be a matter of choice, I would think.
A thought for reluctant writers...maybe the MP person could open up an account for the other(s) - making the start a bit easier. Naturally, only doing this with the others' approval.
Another thought for reluctant writers...maybe the MP person could take dictation for the other, thus starting the process.
Anyhow, like I said, these are just thoughts...late at night...
Cheers!
Alayne
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CFS/FM Sick 30+yrs. NoIRs/Zinc oxide. 6/05:25D-34, 1,25D-69; 11/07:25D-8 1,25-37. 11/17/05-Ph1, 5/06-MPh2, 12/06-MPh2#2, 6/07-MPh2#3,1/08-Ph2, 4/08-Ph3. 4/09-10/09 weaned off abx. Benicar q4-6h. Heavy metal chelation as recent adjunctive therapy.
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neuro-lymie
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Posted: Tue Mar 31st, 2009 05:21 |
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Barney asks "How are we doing with our mate?"
My mate has been on the MP for a few years. He still has severe neurological symptoms that would challenge the most patient being in the world. He is a lovely man who has extreme rages, mood swings, sometimes violent behavior, and nastiness. This is accompanied by confusion, a continuing ability to get much done and a continuing lack of short term memory, along with general bodily weakness.
Again, I will say that he is a lovely person - which is why I'm with him in the first place. However, being with him is like being with a ticking time bomb and it's terribly difficult and stressful to be around. No matter how rationally I think (I know he is ill), it's tough not to let some of the insults, rages, and general meanness sink in. I feel battered.
I have promised that I'm in this for the long haul, but I never see anyone else talking about how difficult it is to be in this kind of relationship. I also never see anyone posting that he or she has such extreme behavior. I can understand that no one would really want to explain the true extent of what they might have done, but it certainly would be helpful to hear from others what they TRULY are dealing with - without softening the edges.
It would help make me feel like I'm not completely insane for continuing with this experience, and also give me some hope for improvement. A few others who know me wonder if I actually like being abused or if I'm blind. That just drives me crazy.
Part of the difficulty is not knowing what's personality, what's adversely affecting the personality, what's "simply' the illness, and so on. I know they're all intertwined.
Thanks,
B
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Neuro-lyme or Neuro-Th1 Disease. Avoids all D and sunlight.25D 30, 1,25D 62. Wears Noirs. Phase 3. Benicar 40mg Q4-6H.
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Liopluridon
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Posted: Sat Apr 4th, 2009 17:14 |
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neuro-lymie wrote: Barney asks "How are we doing with our mate?"
He is a lovely man who has extreme rages, mood swings, sometimes violent behavior, and nastiness.
However, being with him is like being with a ticking time bomb and it's terribly difficult and stressful to be around. I feel battered.
Thanks,
B
I just grabbed those snippets. It tells me maybe he should continue on his own and when he recovers, you can reunite. You have to think about your own health too.
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Juanita
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Posted: Wed Jun 3rd, 2009 21:26 |
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For us, (all five of this family are on the MP) we've grown deep respect for how keenly our brain health determine our emotional states. Neuro IPs are truly rough sometimes. We have become committed to taking responsibility for our behaviours. It's rule number one.
So, sure... a rage IP or an irritability IP or a paranoid IP or a manic IP or looping thoughts IP or an irrationality IP.... you can't choose which ones you will have. And while you learn how to play with your meds and wait for the benicar to kick in, it is still the individual's responsibility to be clear about what's going on and to take ownership of behaviour.
Being clear with others with what's going sometimes comes out with a scream, "I'm filled with rage but it's an IP so ignore me!!!" But at least then everyone in the house knows that you need extra kindness or at least space and tolerance.
As the treatment takes so many years before we're well, we can't use the excuse 'be patient with me as I do this'. Not as if it were a free pass. Because Life is a journey and it doesn't stop just because we are sick or on the MP.
I feel it is an art form to be in relationship with ANYBODY while doing the MP. More so when you are crammed into a house, all on meds, like lab rats in a small barrel.
It takes commitment to forgiveness, to laughter, to emotional growth, to learning how to love well, in how to create safety for yourself and your family, friends, partners through honest communication and boundaries. A commitment to manners. A commitment to self care.
Basically, there is a WHOLE other road going on while we are taking our meds and doing our IPs. We are growing as people. But only if we make that choice. My largest fear is that I'll complete the MP, but not taken my growth path and I'll be a total jerk.
'Cause heaven knows... I've learned how to speak my mind.
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D/ On MP 27 months
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eClaire
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Posted: Thu Jun 4th, 2009 03:25 |
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Juanita wrote: It takes commitment to forgiveness, to laughter, to emotional growth, to learning how to love well, in how to create safety for yourself and your family, friends, partners through honest communication and boundaries. A commitment to manners. A commitment to self care.... But only if we make that choice.
I'm glad you mentioned choice here...even for the partner (etc.) who is not on the MP, as I certainly am right there with you. Wish my partner had made those choices as well. Not just for the sake of our relationship either, but for her own sake.
Claire
P.S. Have you noticed that right smack in the middle of the word choice are the letters "O I C". "Oh I see"...if only most people could see that they have a choice in how they handle life's ups and downs.
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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marion villa
Member
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Posted: Thu Jun 4th, 2009 18:27 |
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well, eventhough we manage well almost always, or at least that was what I thought, these days have been tough, because I have been very low energy leveled all this year and a half, and I think he is bored.... I catched him looking for other women in the tagged and so,I think he is not having serious relationships, but it hurts a lot to know that he sees other women which are healthy and flexible and quick and I am like a little old lady.....may be not ugly, but I feel ugly, you know what I mean???   disabled=disadvantaged
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Lupus, RA, erythema nosodum, skin ulcers, MP 11/07, voltaren, paracetamol advil, almagato,Tylex w/codeine, NoIRs, limited outings covered up,Ph 2 started 20 april 2008, 25D<4ng
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eClaire
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Posted: Thu Jun 4th, 2009 18:37 |
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Oh Marion do I know what you mean!!! Invalid = in-valid. I think I became an object in my partner's eyes. Someone who was definitely holding her back from life. What she did not realize is that THIS IS LIFE and it can be a grand life full of all sorts of self discovery and peace and happiness. There are no guarantees and if you love someone, you commit to be there for better and for worse. I guess far too many people would prefer to have the clause "but not for disability."
Claire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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marion villa
Member
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Posted: Thu Jun 4th, 2009 18:45 |
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he is still here, but I am angry and jealous,and I wish I could have a lot of boyfriends to chat and to dance ( and really dance I mean, I cant )
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Lupus, RA, erythema nosodum, skin ulcers, MP 11/07, voltaren, paracetamol advil, almagato,Tylex w/codeine, NoIRs, limited outings covered up,Ph 2 started 20 april 2008, 25D<4ng
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Juanita
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Posted: Thu Jun 4th, 2009 22:26 |
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I understand, Marion. It is difficult to be sick and it challenges our relationships. I am so sad that you aren't feeling secure with your man right now. Or happy with being tired all the time.
I think that one of the worst parts of being sick is growing patience with the healing process. I like to run. Chronic fatigue is so discouraging to have to deal with. And yet, by the time we are each well again, just think of how calm and patient we will be! Ha!!
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D/ On MP 27 months
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Juanita
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Posted: Thu Jun 11th, 2009 22:03 |
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If I hear one more time from my MIL that I just need to get right with Jesus instead of taking my pills........
I won't even finish that sentence in case I incriminate myself in potential future criminal proceedings. 
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D/ On MP 27 months
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marion villa
Member
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Posted: Thu Jun 11th, 2009 22:10 |
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Jesus Jesus!
If I were a faithful person maybe it would help, but I don´t, and I can´t help it.
Juanita when I feel ok I will visit you in alberta and we will go running, oK?
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Lupus, RA, erythema nosodum, skin ulcers, MP 11/07, voltaren, paracetamol advil, almagato,Tylex w/codeine, NoIRs, limited outings covered up,Ph 2 started 20 april 2008, 25D<4ng
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Juanita
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Posted: Thu Jun 11th, 2009 22:37 |
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And the nice thing is.... keep taking your pills and healing will happen. Religious, spiritual, or atheist, eh?
Maybe when we are well, and you can come up here.... we'll go visit my MIL and show her our miracles.
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D/ On MP 27 months
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marion villa
Member
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Posted: Fri Jun 12th, 2009 18:54 |
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| Yes!! and then you come here and we go to model our healthy selves to my former rheumi, who refused to support me in the MP
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Lupus, RA, erythema nosodum, skin ulcers, MP 11/07, voltaren, paracetamol advil, almagato,Tylex w/codeine, NoIRs, limited outings covered up,Ph 2 started 20 april 2008, 25D<4ng
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Joyful
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Posted: Sat Jun 13th, 2009 11:42 |
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Juanita I am so glad you have your 'MP family' here where it is safe to 'rant' if you need to. Your MIL probably has no idea how unappealing and hurtful her faulty representation of her beliefs is. Maybe someday you can have the chance to ask her, "how can I see your Jesus when you keep standing in between us and blocking the view?" That might quiet her down a little. She probably has more faith in her pushy confrontational approach than in her prayers. And sadly, she probably has more pride in the 'rightness' of her opinions than she has genuine love and compassion for you.
Marion, I want to cry when I think of how your husband's 'window shopping' must crush your already fragile heart. This disease gets to us already with what I've seen Juanita call self-loathing. It's so real. I never had it before I started healing on the MP. You can post here for support, but I know it doesn't really bring comfort the way having your close family understanding and affirming you would. But every little bit helps.
Claire, I am so amazed at your resiliency in recovering from your experience of 'in-valid-a-tion'. The traditional words, 'for better or worse' are part of something our culture has no concept of... it's called vows or covenant... you know, where you give your word and you'll die keeping it. Arabic Bedouins could teach us a thing or two on that topic. Our culture thinks in terms of contracts and what's in it for me. Sigh. When I read your posts I can see that you at not stuck in your grief. You may feel a pang from time to time, but your attitude to embrace life shines through.
You (all) aren't really looking for answers, but I mostly wanted to let you know I see the pain and the frustration and feel some of it with you.
Do you remember the poem: "Anyway"? It has the line...
...People are often unreasonable, illogical and self centered...
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MP Stories | Bacteriality | MP Search | MP Knowledge Base
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eClaire
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Posted: Sat Jun 13th, 2009 14:19 |
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Thank you for your kind words Joyful.
I very much believe when you have once come to love someone enough to commit to them for life, and where there is no physical and emotional abuse, then sticking to the commitment makes for a very powerful spiritual journey. One that two people can share. It takes two people being willing to take the journey together to make it happen.
It seems to me that far too few people know the difference between romantic love and the sort of mature love that can grow out of that. We live in a throw away culture where everything is "supposed" to come easy, and at the same time we frustrate easily (e.g., the microwave takes too long, our computers take to long to boot up or surf the web). Well, there are a number of truths about life (in my estimation): life is hard, life is not fair, and suffering is inescapable. (It seems to me that once you accept that life becomes much, much easier.) Searching continually for the easy route leads one to a harder road with more suffering IMHO. And it does little for character building. Each of us has blind spots, and yet it seems to me that this particular blindspot is running rampant in our culture (the U.S. culture).
I'm a pretty happy camper most days (have been since about 7 months after the break up). I'm still hurt by my ex's actions (and working through stuff), however, I have bounced back from the betrayal I experienced with my ex with a surprising swiftness (surprising to me). I think being disabled and coming to terms with that has helped me learn to return to what is important no matter the circumstance: enjoying the opportunity for life and the life that I have to the extent that I am able. And I'm capable of loads of joy regardless of my circumstances.
The best revenge is to go on loving life.
Claire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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marion villa
Member
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Posted: Sat Jun 13th, 2009 19:40 |
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Joyful:
You are just so kind reading my post, I appreciate you support and your words too. Yes I am self loathing but before MP wen I felt ill, to see mu friends youg and flexible and to feel like and old lady snce I was 20 has been a tough experience, because althoug intellectualy I know I am not ugly, but I do feel ugly, old and not worth to look at.This accentuates when I have a herx, or a crisis Before MP. I know my husband loves me in his way, he has never left me alone and helps a lot, but noticing that he want to see the shop merchandise
gives me this old feeling about being ugly and unnatractive.
thank you again
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Lupus, RA, erythema nosodum, skin ulcers, MP 11/07, voltaren, paracetamol advil, almagato,Tylex w/codeine, NoIRs, limited outings covered up,Ph 2 started 20 april 2008, 25D<4ng
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Deb Grabetz
Moderator
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Posted: Sun Jun 14th, 2009 11:56 |
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Reading through this last discussion...I'm thinking (now that's scary in itself) that we really need companionship from our significant others, our family, our friends and yet when we are going through Neuro IP or other IP...the last place we sometimes care to be is around anyone! ...and why? Because they are too challenging for us, or for me anyway!
I used to find when I was flat on my back, my Yorkie and my blanket brought me the most comfort. My daughter would also bring her Yorkie to stay with me...and the two of them (who BTW, do not get along mainly because my Chloe is older and snubbish to the baby pup) would lay by me on different corners of the bed and watch me. They sensed I wasn't well, so they didn't put any demands on me, they were just there to comfort...their warm and caring eyes told me that they were concerned...and my daughters puppy would just lick my hand endlessly trying to get me well...
Ahhhhhh, if only people could be a bit more like our pets. People expect us to be bright and cheery and tell them how well we feel...when we feel like crap!....and no matter how hard some try....they will never understand what it is like to have symptoms wax and wane with such inconsistency that even I was unable to make sense of it. I know people, some are family members, who if they woke up feeling the way I have in the past 20 years, would carry on as if they were taking their last breaths and yet have zero compassion for others.
This disease process is very lonely....and I think my greatest blessing is that I've had a place here on the MP to come and post for the last two years...where I know each and every person here understands when I say I'm fatigued, or lacking spunk...or happy...or sad...silly...or angry... because guess what, we've all felt this way...and the loneliness can really get to you and open up a box of emotions...when there is no one who understands!
I know that my path to getting well was much brighter because of all of YOU!
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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eClaire
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Posted: Sun Jun 14th, 2009 14:09 |
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Deb, You were right on the money.
I think I would have gone insane from the isolation and lack of understanding if not for the friends I've met on the MP and not all of them post here.
Thank God for each and everyone of you! Claire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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marion villa
Member
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Posted: Mon Jun 15th, 2009 00:25 |
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| You are full of reason: and also something that paralizes me to take choices is that whith this up adn downs on the herxing, (body and neuro) I don´t feel I am reliable enough to take my life enterely in my hands, you know? I am afraid of not could do it , (language hole!) I depend on others, happen to be my son, husband and my employee. My parents died both about 3 years ago, and my sister doesnt have the patience to help me. Friends also have things to do on their own. I am a boring case.
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Lupus, RA, erythema nosodum, skin ulcers, MP 11/07, voltaren, paracetamol advil, almagato,Tylex w/codeine, NoIRs, limited outings covered up,Ph 2 started 20 april 2008, 25D<4ng
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