Multiple training I have had in the past, before Lyme, say 80% of our communication is non-verbal. Body language, gestures, tones...not the words being said.
My wife very often sighs when I ask for help when Im "down". I get rolled eyes, an immediate how busy she is response.
Lately she keeps reminding me of the unfinished hallway downstairs....I just cant do physically now. I dont think she believes me.
When I have approached her to point out how this is making me feel her response is even worse...
she says things that turn it back to me, like the disease is affecting my brian and Im over reacting, seeing things that arent there etc.
She has this look on her face, a particular look when she thinks Im "Lyming out". This is the way she looks at me when I confront her about just about anything lately.
I think she, while denying it, is using my illness and specifically cognitive issues to avoid the truth.
I feel hurt and this only exasperates my symptoms and leaves me even more exhausted.
I sometimes feel like this is the only place I can come where Im understood and still respected. My experience adds value to peoples lives, I hope, here.
I dont like feeling this way, My wife should be my closest and most supportive person in my life, yet Im incresingly dreading her voice and drama, while I wait eagerly for a PM or see a positive comment to one of my posts here.
Im fatigued, I cant drive anymore, activity worsens my symptoms, and just feel like I need more help and emotional support here at home.
Were going on 3-4 years dealing with this...I guess Im just tired and having a weak moment...dont know, maybe shes right, maybe I just cant tell anymore due to the damage to my brain and cognitive issues.
BJK
-------------------- BJK
Nothing I write here is medical advice...I'm just another lymie sharing how this disease has affected me personally Posts: 175 | From Central Maine | Registered: Sep 2007
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I just posted something about this topic..... under General support.....
understanding life with lyme... read that thread it is really good..... people responded very nicely.....
sorry you are going through this especially with your wife......
we have been going through this for hhhhmmm I think it is 17years now....geez thats long....
at the beginning..... through out the first 5 years we did see a councelor...
..seperatly and together....its not that things were bad in our marriage
it just was that the ......"sickness and in health ..." part of our vows came sooner then we thought
and we both werent prepared for it......
But,we the ill ones did not want this.....did not see it coming.....couldn't do anything differently....
my husband and I have always been able to communicate......but Lyme just took that away...
..it was hard for us to talk about our disappoinments......our dreams... our fears....
..we didn't want to burden each other.....its still hard....
but I truly beleive if you don't communicate with each other........
one of you will go else where for that connection.
I'm not saying that communicating with others is wrong...this website is awsome......chatting with people here is helpful.
Maybe have your wife go on this website.....read some posts...maybe she will see how hard it is for others......
I know that it is hard for our spouses too.
come here for support when you need it........but also communicate your feelings to your wife....
thats my 2 cents......
but......... i do know how you are feeling inside and out.... i do know the pain and suffering and sacrifises you go through everyday..... i do know that you want your ....self.....back.... and .....
i do know that you will get better......
hope your having a better night.... mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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I just broke up with my boyfriend of seven years for a lot of reasons. One of the reasons was that I felt like he was always looking down on me.
He was acting like I wasn't contributing to the relationship.
Or like I was exaggerating how I felt.
I don't know if that was really the case at all anymore, or if I just felt like everything was out of balance.
I do know one thing. Don't assume you have psychic powers or that your wife does either. As well as you know her, you don't really know what's going on in her head. You have to talk about it.
I'm trying to imagine what it would be like to be married to a chronicly ill person. I think maybe people can't have just one feeling all the time. on any given day week or whatever they'll be happy sad thinking about the future distracted or whatever
Your not gonna be in the same place in your head at the same time.
She obviously loves you or she wouldn't be around. Cut her a little slack.
How much time do you spend each month wondering what pms is like and what you can do to help?
Posts: 102 | From ny | Registered: Feb 2008
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Prior to being diagnosed, I was doing some research on Lyme.
No doctor could find anything wrong with me and wanted to diagnose me with
Post Traumatic Stress Disorder.
My husband said to me that I was going to convince myself I had Lyme
If I continued to look at it.
Finally found someone to do a Western Blot, was diagnosed
And through Lymetoo, found my LLMD.
He has no tolerance for sick people. Especially if you don't look sick.
But wait....about 5-6 months later he started feeling bad.
Mind you in between my neighbor tested positive for Lyme as did her child.
He insisted it was his testosterone leve.
Nope....Normal. Had a local duck pull an Elisa.
Guess what? Positive.
I then contacted my LLMD, had him tested through Igenex and
He was also diagnosed with Lyme.
It was real for him when he felt ill.
You would think as we are basically in the same boat,
Except I was also diagnosed with babesia and bartonella,
That isn't the case. Still no patience when I am suffering.
Of course I don't have the luxury of coming home and napping....
Staying on the couch all day.
Since then, both children have also tested positive and diagnosed.
He feels since we have to push through so should our young ones.
Ummmm.....Not.
I guess I should add he is a former Marine.
I come here or speak to my neighbor when I need support.
My Mom is pretty suportive too.....now.
My husband never has looked at Lyme info.
He relies on me.
Hang in there. You are going to make it.
Maybe your wife would benefit from reading Lymedad's post about his daughter.
You are doing the best you can.....even if she can't recognize it yet,
I do. Hang in there. Come here for support.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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I'm a parent of a child with Lyme Disease. My 29 year old daughter has been sick for almost 7 years. She wasn't properly diagnosed until October 2005.
I'm not trying to find excuses for the way others perceive you all who have Lyme or how they treat you; however, for the first three years of my daughter's illness I was the worse father an ill child could have had.
She just didn't look sick, you know? She complained about fatigue, joint pain, migraines, etc. but she just didn't look sick.
I grew up in an era where if you weren't bleeding or puking, you just couldn't be that sick - get to work, you're just lazy.
Basically I was a fool.
It wasn't until we found a doctor who could really explain to us the reason our daughter felt the way she did that I started to have the compassion that she truly deserved.
Our daughter's LLMD has Lyme Disease. He has been able to really help us understand the causes for the pain, the neurological symptoms, the flu-like feelings and all the other crep you all go through.
I'm rattling I know; but I just wanted you to know that the disease you have is extremely hard to understand for those of us who don't actually suffer the way you do.
Now that we know what is wrong, my little girl and I have been fighting this thing together for almost 2 1/2 years. I've been to every single doctor's appointment with her. I've been to every single ER visit. I've been to every single night of her hugging the toilet all night long.
We've exhausted our savings and my wife and I work multiple jobs to pay the doctor's bills. And to be truthful we've all aged tremendously these past 7 years.
I'll never be able to make-up for the way I first treated her when she became so sick, but we're going to beat this thing together.
Try to be patient with your loved-ones. We're just ignorant of what you're going through. One day they'll come around.
There is hope. There are people out here who have the compassion you need. There are people out here who suffer just like you do. There's a power greater than all of us who has a reason for putting you through this ordeal.
You hang in there, get strong, get well.
LymeDad
Posts: 681 | From California | Registered: Oct 2005
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posted
I hear you. I have this too w/ my DH. Great guy, very supportive in almost every way-oh except the way where I have to be on the couch, can't get up, can't drive, can barely parent, etc.
He comes home and asks how I am, I feel I can't say. He thinks it's boring for me to "only talk about being sick." And I swear I am trying my best to diversify. But, hello, I am trying to get better and pretty much my every effort is in that direction: taking heaps of drugs and herbals, eating totally healthy, no sugar, no alcohol, no smoking, doing yoga, etc.
I am also researching to find out what else I should be doing. I know it's boring, but I am trying to get my life back. He asks if I want to go out on a date. Yes, I WANT to but I CAN'T. Somehow, it's chalked up to being a choice and it's not.
Also, I get the "maybe you're imagining" this relapse or lyme. Except, hello, I have + bloods and babs tests. Somehow, I should just push through. The annoying thing is that I AM the kind of person who pushes through, but I can't push through this lead suit I'm wearing and the I can't push through the dense fog swirling around me.
I was just saying to my best friend today that I think I need a medical therapist, someone I can really complain to who isn't my family. I know it's hard on them. Especially the neuro stuff. I can't STAND the sounds of my kids playing. I can't STAND when my DH whistles--it feels like knives cutting my brain. I am unable to make decisions without crying. And I DEFINATELY cannot take any criticism.
What I can do, is on good days, I can cook. So I try to do that. And I can pick up the house, so I try to do that, even if it's only the 5 minutes before he gets home.
Are there a few things you can do that you can focus your energies on that will be well received? Forget finishing the hall, I think exposure to construction materials, paint, wood dust, etc will exacerbate your symptoms.
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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posted
Thanks everyone, this has helped a great deal. BJK
-------------------- BJK
Nothing I write here is medical advice...I'm just another lymie sharing how this disease has affected me personally Posts: 175 | From Central Maine | Registered: Sep 2007
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bettyg
Unregistered
posted
bj, so sorry to read this!!
i've been very blessed! we have been married 33.5 years; and he married me SICK not knowing anything what i do have .... chronic lyme NOR did i know it back in 74 !!
he's never seen me HEALTHY! it's my goal to get into remission so he can get to KNOW THE REAL ME HIDING DEEP INSIDE MYSELF!
is she willing to read a lyme book to understand,
watch one of the good LYME VIDEOS on internet that are accumulating like crazy?
watch UNDER OUR SKIN 15 min. with you?
best wishes; come and talk to us; we ARE walking in this narrow shoes of yours; they rather PINCH today, don't you think? lol
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She had read most of "Coping with Lyme" but it was scaring her back then and making her anxious so I asked her to put it away.
How do you get the Under Our Skin video? Im on a dail-up connection so online videos are out.
BJK
-------------------- BJK
Nothing I write here is medical advice...I'm just another lymie sharing how this disease has affected me personally Posts: 175 | From Central Maine | Registered: Sep 2007
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posted
BJK, I am so blessed with a husband who never once questioned me on a day I just didn't feel like doing anything even though I couldn't really pinpoint what was wrong. I denied my illness more than he ever did.
On the other hand, he did get overwhelmed with carrying the whole load around here. We have six kids (one with Lyme), so he was working, then stopping at the grocery on the way home, cooking dinner, etc.
So, he didn't always have this look in his eye like he felt sorry for me or was having empathy on how I felt .... on the other hand, was I having empathy for how he felt?
That might go a long way with your wife ..... tell her you know how hard this must be on her especially after all these years of dealing with it. When you start showing her more empathy, you might also start seeing more from her.
And, you are probably more sensitive to things that aren't a problem ... I got a little paranoid when I'd have a flare .... the first sure sign of a herx was when I felt the world was out to get me and no one cared.
Just because she's overwhelmed doesn't mean she doesn't care.
Have you seen any improvement in the past few years of treatment? Have you been on the MP the whole time?
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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We have 5 kids (8-15 yrs old)and have been married for 18 years, she has stood by me through many trials.
I went undiagnosed for several years. Ive been in treatment for almost a year, and yes I have improved in many aspects. I can walk without my body twisting and throwing me around, my mind, while still having trouble is improving- I can read and speak now fairly well
I have less confusion, less joint pain, and some other bizzare symptoms ar gone.
My LLMD and LD specialist want to try me on a trial treatment for babs due to persisting symptoms, I started with Malarone this week.
My persisting symptoms could be Lyme, babs or bart...I think I may have both bart and babs and havent been treated for either, we'll see.
I appreciate your reminding me of her side of this ongoing saga, its been really tough on her. When I started to really go down hill in winter of 05' she lost her mother to cancer at the same time.
She has alot to carry, and due to a ligering disability appeal we basiclly have no income.
This topic inspired me to write something that may help those having difficulty understanding. Particularly the cases of strong denial.
I havent felt like writing for a while, so I suppose thats a good sign.
Nothing I write here is medical advice...I'm just another lymie sharing how this disease has affected me personally Posts: 175 | From Central Maine | Registered: Sep 2007
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bettyg
Unregistered
posted
bg,
here you go; this is the YOU TUBE version of 5 minutes; should work on your dialup as that is what i had until 5 wks. ago for 8 years!!
if it doesn't work right away, let it download, and when it's done, hit PLAY and it will pay continuous; that's what i had to do for things i really wanted to watch as i read the lyme board and replied back to others!
BOOKMARK THIS FOLKS; you'll come back to it again and again or send it to others you want them to see it too for 5 minutes!! --------------------------------------
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posted
Sorry, I had you confused with someone else who goes by three capital letter initials starting with B who uses the Marshall Protocol. I thought this sounded quite a bit different than his other posts, maybe it's because it is a different person, LOL.
I hope the babs treatment helps. I just started back on Malarone yesterday ... I was on babs treatment for over a year, and when we tried to lower to a maintenance dose, it came back .... I had forgotten what a babs herx feels like.
Oh, and my starting on Malarone seems to have made my husband the biggest jerk in the whole world, LOL.
I hope you see even more improvement soon.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
That really sucks. I was lucky, shortly after I got sick, I took my boyfriend to a great Lyme conference (believe it or not, in Manchester, VT), so he knew from the start what we'd be going through. He still doesn't completely get it, but he is at least sympathetic, never gives me a hard time, and does most of the housework.
So, take your wife to a Lyme conference if you can, and in the meantime, show her this, which was posted on lymenet before:
Take care.
Posts: 449 | From Vermont | Registered: Nov 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
The info. below has good stuff about the fatigued brain and heart and some good suggestions for treatment.
It would be helpful for others to read this to gain an understanding of fatigue, regardless of cause.
However, if all this is caused by underlying infection(s), it is vital to treat infection . . . along with these other practical suggestions, that seems the best plan if the cardiac impedance is an issue. Also addressed are key elements of detox ability.
Sarah Myhill Limited :: Registered in England and Wales
Excerpts:
CFS is Low Output Heart Failure Secondary to Mitochondrial Failure
Low cardiac output explains the symptoms of CFS
Related Test[s] MITOCHONDRIAL FUNCTION PROFILE
Related articles Mitochondrial Function Profile test - practical information for non-UK residents
July 2007
_From the feedback I have had from the many doctors and patients doing the MFP, there is no doubt that this is a centrally important part of diagnosing and managing patients with chronic fatigue syndrome.
What the test does is to identify the biochemical lesions that are causing the fatigue.
It is thanks to Dr John McLaren Howard that we have this test and he is always coming up with further refinements. This, therefore, allows us to be more effective at diagnosing where the problem lies.
There are two new tests which we wish to be part of the profile, namely extracellular superoxide dismutase (SODase) together with routine measurement of glutathione levels.
As a result of these two extra tests, the cost of the Mitochondrial Function Profile, which will now include the mitochondrial function studies (ATP profiles), levels of Co-enzyme Q10, glutathione peroxidase, zinc copper SODase, manganese SODase and extracellular SODase together with NAD levels and cell-free DNA will increase by �20 to �195.
. . . currently looking at specialist equipment to refine these tests further, particularly in respect of oxidative phosphorylation. This will allow us to further refine the necessary package of supplements.
This is important because some people simply do not have the physical, mental, emotional or financial resources to put in place all the necessary interventions and it will allow us to concentrate on a few important ones for that individual patient instead. So watch this space!
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
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