posted
For quite some time now my wife his been sick, and for quite some time I really haven't been much help. We have very different personalities and I get frustrated because I deal with being sick differently. My frustration bottled up and I became pretty insensitive to say the least. To make a long story short, I am looking to help my wife and be the caring husband that I should have been. I want to learn more about what I can do to support her. We are going to beat this thing - together. Any suggestions from anyone as to how a loved one can help would be appreciated.
Posts: 39 | From NJ | Registered: Feb 2008
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lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
I'm sorry to hear about your wifes issues. I'm glad your now taking the steps to find ways to help her. I'll start off with some areas you can consider and I'm sure others will provide you with better advice then I.
First find a good LLMD to assess her situation and make an appointment, that in itself will take some time. Get all your records together trying to make a list of symptoms when they occurred, blood tests, doctor visits prescriptions.
Assess any dental issues, mercury amalgams, root canals and the like with a biological dentist. Dental issues can retard the immune response.
Some of these appointments may take awhile. So the areas you can start on right away is quite simply diet. A good multi-vitamin, I use "alive" which I purchase online. Look into raw foods instead of cooked, cooking removes the enzymes needed for digestion. Do some research on digestive and proteolytic enzymes. If you have the means seek help from a nutritionist.
Lymenet is great at providing information so you'll need to dedicate time to weed through it all.
My prayers are with you.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
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It's great that you're working to get some support. You need it, too. I hope there is a friend or relative that you can talk to about how much pressure this puts on you.
I am the wife who's sick, and let me tell you it's the pitts. Before this, I was a go-getter: Three kids, legal career, volunteer chairperson of numerous charitable and government bodies, cook, gardener, caregiver to rest of family including 97 year old grandmother, etc.
Even though DH and I have a wonderful relationship, this illness has really put a strain on it. First of all, I still "look" fine so he never knows if its a good day or bad.
Second, the fatigue is OVERWHELMING. He comes home from work and finds me on the couch, or if I'm up, so grumpy just trying to cook the meals, keep the house. I can't explain to him what the fatigue is like. It's not like being tired, because sleeping doesn't help. It's more like wearing a lead uniform, all the time.
Third, my symptoms are neuro, so "maybe" it's all in my head. Both DH and my best friend have asked me if my symptoms of relapse since going off meds could be in my head. Well, yeah, they COULD be, but I've never had psychosomatic illness before. I've never been depressed before. I've never taken to my bed because I was upset. I'm sick, and they just have to believe me on that.
Of course this is all helped by uncertain test results and uncertain treatment. My test results are 4 positive bands on an Igenex IGG and a CD57 of 18 (extremely low). Still--they doubt. Don't get me wrong, I doubt too and I question whether it's in my head, but it's not helpful if they do.
What is helpful to hear from DH is that he loves me; that he believes me about my symtpons even if he can't see them; that he can confirm that I've never been a malingerer before; that he will help me find treatment (and fight for it and pay for it); that he understands that I am terrified of becoming incapacitated and of the bugs living in my head; that it's ok and we'll get through it together.
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Well said mamala. Great "sick wife" perspective.
It certainly does not make trying to live with these awful tick-borne diseases any easier to have an unsupportive, uncaring and at times downright cruel spouse seemingly working against your efforts.
I think it is quite noble that you are willing to try to change your ways to be more supportive. I hope that you will be successful because I'm sure that your spouse could really use some help.
I would "second" mamala's post from the "sick wife" point of view, (especially the "lead suit" description of the fatigue) and I hope that you are able to get some more input from other supporting spouses, who may be able to offer you some coping strategies.
Good luck in your endeavor. I'll keep you in my prayers,
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
You sound like a great husband!!! My advice: Unless she has pain/touch sensitivity issues, make sure you don't back off physically- hold her, hug her, hold her hand if she has medical procedures- BE there bodily. And just hang in there WITH her, even if you are sick to death of hearing about it, do your best to BE present with her, don't abandon her to do it all alone- Take care- Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Thanks for all your advice and prayers. Catskillmamala, You explain it a lot better than I can.
I'm not sure I would call myself a great husband CaliforniaLyme. But I intend to try to be the best I can.
My best and prayers to all of you.
Posts: 39 | From NJ | Registered: Feb 2008
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bettyg
Unregistered
posted
welcome! I'm sending you a private message of my lengthy NEWBIE package newbie links, advise, symptoms, tests, disability.
symptoms long list, testing, disability, and much more including treepatrol's archive of over 1000 links of good lyme info!
SKIM my info first to determine what it is you are most interested in learning also just sent you my newbie package of links, advise, about FIRST to help you ok! now it's reading time!
you can find it on left side under HELLO by flashing light and in my profile.
glad you found us; if you/she needs support, go to that area and post; we'll help you both thru this journey of hell.
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
You are taking an excellent first step, coming here and asking HOW to take care of her and learning from others how she might feel.
It is a difficult illness because on the one hand you look fine. On the other, the fatigue (and the word fatigue doesn't come close to describing what it really is ... think of how you feel after having a bout with the flu, the time you are not sick anymore, but can't seem to walk across the room to get a glass of water ... that is getting close to how Lyme fatigue feels) is debilitating.
It is important that you never question whether she really feels this bad.
I USED to deal with being sick differently ... I don't know exactly what you mean, how you deal with it differently, but I know for me, I used to just suck it up and go on. Maybe I'd go to bed early, but I'd push myself even though I wasn't feeling up to par.
With Lyme this is impossible! I was so physically debilitated that at my worst after my daughter had helped me to the bathroom because I was too weak to get there on my own, I just lied down on the bathroom floor for a couple hours instead of going back to my bed. Again, I looked fine.
Now that I'm getting better, our whole family had a head cold .... I was just as "sick" as everyone else, but the cold didn't get me down like it did the others. You never would have guessed that I would have reacted this way to being "sick" if you had seen me when I was sicker with Lyme and lied down all day some days never getting out of bed. You would have thought that this cold would have sent me to bed until I got better.
So, even though you react differently to being sick, unless you've had Lyme, you really don't know how you would act with this illness. It is completely physically debilitating.
Even now, I'm mostly doing better, but some days I'm just tired. No one in the house questions whether I really feel this way, or whether I'm exaggerating, they just ask if there's anything they can do for me.
The second aspect of the illness is the pyschological. First, most of the tests come out negative, so you appear like an nut case. Then most doctors say there is no such thing as chronic Lyme, you're not really this sick ... you have the same symptoms as normal people have, you just are unable to handle them as a normal person does ... you are somehow weaker than others ... "lower threshold of pain".
So, you REALLY need your husband there for support and even protection .... to stand up to these doctors and insensitive relatives. Besides taking her to the doctor, believing her, taking care of her when she needs it, she needs you to stand up for her to whomever is causing her trouble ... be it her mother, siblings, doctors, etc.
You need to be her rock. I honestly can't believe how great my husband was through this whole thing. He never once questioned whether I was really sick, even when I was in the deepest stages of denial. And, my husband isn't the most sensitive guy on earth! He's the type to say, "What do you need NOW???" like he's really being put out .... but the fact was, he was always there, always standing up for me, taking me to the doctor, or coming home to make me lunch because I wouldn't eat.
He had the right balance of "get your lazy @$$ out of bed and get to the gym (for a pathetic workout, LOL)" and "You seem too tired today, just stay in bed and rest." He knew when I needed to hear which.
Just be there for her, in whatever way she needs you, and don't think about how you would be if it were you who were ill, because you really don't know unless you've had Lyme before.
Also, you can't "fix" this .... you're needed for support. You're off to a good start.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Thanks for setting me straight. I have a lot to learn.
Posts: 39 | From NJ | Registered: Feb 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I was hoping to not come across like I was trying to set you straight, LOL! It's difficult in this medium.
I think you're doing the right thing being here and trying to understand where she's coming from. She needs you right now. This is the most difficult thing I have ever gone through, and in the midst of it, I just wanted to die .... it's that bad, I am not exaggerating.
But I fought and won with my hubby and kids right by my side for support. I couldn't have made it without them.
Now I'm trying to rebuild my health, and my life.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I think the fact that you are interested and asking says a lot!
Prior to my diagnosis, my husband told me that if I didn't
Keep researching Lyme that I was going to convince myself that I have it.
I was dying. I didn't look like it....but I knew.
Since then my husband and two children have been diagnosed.
I think everyone gave you great advice, but I have to mention
A couple of things.....
Lyme rage. No rhyme no reason and no stopping it the moment it hits.
Do not take it personally.
Learning her routine for meds and helping her keep track of them.
I sometimes forget if I have or have not taken this or that....
My husband does too.
Fortunately, I never mess up on my children's meds.
Read and learn about Lyme. That may help you a little to understand
The complexity of this disease and treatment.
At least now my husband knows what a herx is....because he has them too.
He is definitely more supportive since he got really ill.
Keep negative people and situations away from her if you can.
Added stress and negative energy are not good for us.
I think you are great for really putting yourself out there with us
For her. I bet she thinks so too.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
quote:Originally posted by Geneal: Lyme rage. No rhyme no reason and no stopping it the moment it hits.
Do not take it personally.
Oh yeah! Forgot about that! And, whatever you do, don't try to argue about whatever's got her mad!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Not everyone gets lyme "rage" - I've never had that and I've had lyme & co. for over a decade, mostly untreated.
I just think the term might not mean the same here.
Confusion, frustration, fear, exhaustion and yes, anger as well as lots of other emotions . . . but I think the word "rage" can really scare someone and put a misleading label on everyone with lyme.
Rage, to me, is what makes the "News at 11" -
I would call the cops - or 911 - if someone near me had true rage. By definition, rage is thought of as being totally out of control and a danger to self or others.
I know several people with lyme and I find them to be very sensitive and thoughtful people. None of them has ever described "rage" as an experience. Most people I know with lyme are extraordinary in their ability to read themselves and have learned lots of ways to work with emotions that swell up.
If little things trigger an outburst, as they certainly can for anyone who has an infection and is dealing with a toxic overload, it still may not be what most think of as rage.
(Or it can be, especially with neuro- psychiatric symptoms. That requires expert advice and expert medical care.)
Perhaps some here use this term with a slightly different meaning for themselves. I think the use of the term has taken on a different meaning here.
Nevertheless, having a counselor who is very familiar with lyme might be a good idea so the two of you can discuss communication strategies if you feel that might be of help in both practical and emotional situations.
posted
I know what stress does do her, and I am trying to take on whatever I can for her to alleviate some of it. She doesn't feel comfortable having me go to the doctor with her even though I would like to. She obviously has memory problems, but she also absorbs more info on her problems than I ever could. My biggest fear is she spends so much time reading and researching that she doesn't "live". She has a bit of OCD, maybe more than a bit. Don't you need a break from it? Can it be sometimes she forgets things because her focus is on what she is engrossed in? I suggested she try to have a daily routine, so that certain things become automatic. I realize that will depend on how you feel, but it at least is a focus outside of being sick. I work a ton of hours and I am trying my best to cut back and help. We have one child and I worry because she said more than once to me that all mommy does is sit on the computer. It's hard for a young child to understand the magnitude of this. Don't get me wrong, my wife doesn't neglect her. I suggested we join the Y together. I'm not sure how much exercise she is capable of but it's an outlet. I pretty much cut out my gym visit before work to help, but at some point I need it for my physical and mental well being. But her physical and mental well being are far more important right now. I guess I'm babbling a bit here....
Posts: 39 | From NJ | Registered: Feb 2008
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Geneal
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Member # 10375
posted
OCD can be a symptom of Lyme.
Your wife is probably trying to glean as much info as she can
So she can help herself get better.
BTW, for me Lyme Rage is having an abnormal reaction (usually involving
Being so mad I could spit) over something that doesn't warrant it.
I hear myself yell.....I know I am not acting rationally, but can't help/stop myself.
My children have that too but mostly as a "herx" reaction.
Thing is that I have to stop and leave the room and "gather" myself again.
I have had frustration/aggravation, etc. one way or another since Katrina
And our quest to "rebuild" our lives and house and having Lyme disease.
It isn't that.
Thank God I can recognize it now.
That too has gotten better with antibiotics.
I don't think it is a bad thing to want to continue to work out or
Do something for yourself....Maybe a good outlet for you too.
My husband worked out 5 days a week prior to his getting ill.
I never felt that he was doing that to spite me or anything,
Although there was more than one morning, I could have used the extra help.
Because I had to, I did. Now I think that has been more beneficial
To me and my children (Mommy still takes care of them).
Hoping that things get better for all of you.
Sending positive thoughts and prayers.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
quote:Originally posted by hubernacker:
I deal with being sick differently. My frustration bottled up and I became pretty insensitive to say the least
quote:Originally posted by hubernacker:
the caring husband that I should have been
quote:Originally posted by hubernacker:
I know what stress does do her, and I am trying to take on whatever I can for her to alleviate some of it. She doesn't feel comfortable having me go to the doctor with her even though I would like to.
She obviously has memory problems, but she also absorbs more info on her problems than I ever could.
My biggest fear is she spends so much time reading and researching that she doesn't "live". She has a bit of OCD, maybe more than a bit. Don't you need a break from it?
Can it be sometimes she forgets things because her focus is on what she is engrossed in? I suggested she try to have a daily routine, so that certain things become automatic. I realize that will depend on how you feel, but it at least is a focus outside of being sick.
I work a ton of hours and I am trying my best to cut back and help.
We have one child and I worry because she said more than once to me that all mommy does is sit on the computer. It's hard for a young child to understand the magnitude of this. Don't get me wrong, my wife doesn't neglect her.
I suggested we join the Y together. I'm not sure how much exercise she is capable of but it's an outlet.
I pretty much cut out my gym visit before work to help, but at some point I need it for my physical and mental well being. But her physical and mental well being are far more important right now. I guess I'm babbling a bit here....
I know that I must have some input to offer you that could hopefully help you understand why something like this would happen and why it might be difficult for her to just drop all of the people who have been supporting her while you were not.
I am just at a loss for words at the moment & will try to get back to you at a later time.
I also think that she would feel terrible about you having to give up your gym time and possibly sacrificing your own well-being on her account.
[ 03. February 2008, 10:45 AM: Message edited by: AliG ]
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Almost all I did for the better part of six months was sit at the computer. Sometimes I was on lymenet, sometimes reading research on lyme treatment, sometimes just being catatonic.
Mostly I was disassociating myself from the intense pain, fatigue and hopeless feelings. And I have a young child who needed me, but that was the best I could do for a while.
My advice is to learn as much as you can about the disease and treatment options. People seem to get well most quickly when they follow an antibiotic regimen from a good LLMD and also a serious holistic wellness protocol.
That includes healthy diet, light exercise esp weights, herbs, supplements, detox, and possibly hormone therapy.
You can help her by going to the gym yourself, and getting your own needs met as much as possible! The recovery time here is way too long for you to give up on your own needs.
Encourage play dates for your child. Allow friends and neighbors to know that your wife has an illness that will take a long time to resolve, that you need the support, and that you will not be able to reciprocate right away.
We explain this disease as "an antibiotic resistant bacterial infection of the brain and central nervous system." People respect that kind of description.
The best thing you are doing for her is believing her. We don't look very sick when we have lyme, and it's easy to misunderstand how incapacitated we are. It's easy to take it personally too, when you feel like you are being ignored.
This will be a marathon for your family, and perhaps the hardest thing you have been through. But you can come out of it stronger and better for it in the end. We did. She is lucky to have you.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Almost all I did for the better part of six months was sit at the computer. Sometimes I was on lymenet, sometimes reading research on lyme treatment, sometimes just being catatonic.
Mostly I was disassociating myself from the intense pain, fatigue and hopeless feelings. And I have a young child who needed me, but that was the best I could do for a while.
My advice is to learn as much as you can about the disease and treatment options. People seem to get well most quickly when they follow an antibiotic regimen from a good LLMD and also a serious holistic wellness protocol.
That includes healthy diet, light exercise esp weights, herbs, supplements, detox, and possibly hormone therapy.
You can help her by going to the gym yourself, and getting your own needs met as much as possible! The recovery time here is way too long for you to give up on your own needs.
Encourage play dates for your child. Allow friends and neighbors to know that your wife has an illness that will take a long time to resolve, that you need the support, and that you will not be able to reciprocate right away.
We explain this disease as "an antibiotic resistant bacterial infection of the brain and central nervous system." People respect that kind of description.
The best thing you are doing for her is believing her. We don't look very sick when we have lyme, and it's easy to misunderstand how incapacitated we are. It's easy to take it personally too, when you feel like you are being ignored.
This will be a marathon for your family, and perhaps the hardest thing you have been through. But you can come out of it stronger and better for it in the end. We did. She is lucky to have you.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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posted
Please don't misunderstand me. I don't mind giving up my gym time to help her. Things have gotten pretty out of control in our house with her being sick and me working so much. I know this is a long term illness, but I think if I can get the house under control it will be a more stress free place for her.
AliG,
I know she needed support, and continues to from people other than just me. I guess as you all say, I should just support her however she needs to deal with it. And I don't see me sacrificing my own well being. I try to exercise a bit anyway, and maybe we can exercise together at some point.
Thanks again everyone.
Posts: 39 | From NJ | Registered: Feb 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Exercising together is an excellent idea. My husband used to drag me to the gym to lift weights. In the beginning, she won't want to do cardio as that energy is needed for healing.
Read Dr. B's guidelines for treatment and diagnosis at www.ilads.org. He has specific recommendations for exercise. It will help her to get better. You could even show them to her when you suggest it.
A schedule would have thrown me for a loop in the beginning. It would have stressed me out that I wasn't getting done what needed to, even if there was only one thing on the list .... I really needed to move at my own pace, and my pace varied from day to day.
The thing about the internet is that it's easy to communicate here when the brain isn't functioning properly. I had a lot of trouble talking, but I had no trouble typing.
OCD, as previously mentioned, is a symptom. Mine has gotten better.
I know it doesn't seem like she's "living", but the internet and reading about it helps, a lot. That will change as she improves.
I want to suggest that you break up your posts like most of us here do. If someone is really sick with neuro-lyme, they can't read the blocks (paragraphs). So, you will get more responses if you break up the paragraphs.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
If she has any sort of vertigo or sound sensitivity, the gym could be a place of torture. Ear plugs can make vertigo worse. Even if not outright vertigo, if vision seems overwhelmed, finding places with subdued lighting and a calm atmospere might be best.
If you take her - or rather "go with her" (word choice really matters) to a gym, it can be very intimidating both to see others in great shape and having you see her struggle or judge or in anyway "grade" her. It's about how you both enjoy the time, not the grade.
First, I'd be careful not to become her coach as that can set up a parental sort of dynamic that will affect the other aspects of your relationship.
Still, couples usually enjoy getting out and doing things together. I'd suggest letting her guide you as to what sort of movement she might like . . . some choose walking, or STROLLING through cleared paths in a park (of course you want to stay clear of brush).
If you go out together, let her set the pace and I'd say don't make it or think of it as exercise but rather just an activity . . . moving about doing something enjoyable. Sometimes, that might be just slowing strolling a short distance and still on a bench for a while. At first, the key is to get out of the house if you can.
Just some thoughts. I've given up going to the park for walks with anyone. I just can't stand their reactions to my condition. Although they've known me for years and sort of get it, there is the constant comparison. I can't find nausea and their comments, even they are well meaning. It is just too embarrassing.
So, just a head's up about that. The level of endurance possible can be a very intimate thing for a person in this condition. Let her tell guide you regarding any involvement in that for both of you together.
You might also just need the gym time as time to yourself.
The key with any of our suggestions, is that the two of you communicate and figure out your own style.
Again, best of luck as you both find your way to what matters most to you and your family.
-
[ 03. February 2008, 05:25 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Well there is obviously a lot of your experiences that I can learn from. I appreciate your sharing them.
Posts: 39 | From NJ | Registered: Feb 2008
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
hi Hubernacker-
here are some thoughts, for what they're worth:
Living with a chronic dehabilitating disease is awful, BUT neither you or your wife are helpless victims or powerless, and both of you are still responsible for your actions and how you treat each other.
For instance. My husband has been very supportive of me during the going on 6 years of my experience with Lyme.
A very important part of his ability to be there for me is that he has had personal experience with serious illness (he almost died from leukemia as an adult, and was in heavy duty tx for nearly a year).
So, he is not personally threatened or disturbed by physical disability, which is NOT the norm for most people, and which helps pave the way for his being supportive.
He is also a genuinely and generally nice guy who believes in doing the right thing, and who loves me. Thankfully, before Lyme struck we had already worked out the biggest kinks in our marriage and had pretty much come to accept and forgive in each other the incompatibilities that most of us mere mortals bring into our marriages.
All that said, he has had a VERY tough time of it, and there have been plenty of occasions when he was angry with me, even furious.
Problem for him was, and still is-- just who does he get to be angry with?
I know it must feel worse than lousy to be angry with someone who is driving you nuts, but doesn't WANT to be doing that, who ISN'T doing it on purpose, and worse, most of the time doesn't even KNOW you're angry, and worset of all, who doesn't understand a word you're saying when you're trying to explain WHY you are angry.
Is any of that fair or "rational" in the way you wnt it to be? Of course not. But YOU have the responsibility of allowing yourself to feel anger AND of expressing it constructively.
She has the responsibility of understanding that you are entitled to your feelings, and that your expression of them to her is not an indictment or criticism of her and what she in fact cannot control.
The bottom line to this incredibly difficult balancing act is that you need to know all the way down to your core that while she is the one with Lyme, the TWO of you share the problem, and only the TWO of you working together as partners can hope to come up with a way of living with the hand you've been dealt.
The last part of that thought is that even when you pull off the balancing act, the problem is unlikely to stay feeling resolved for longer than a day or a week or two at a stretch.
Lyme has a insidious way of constantly changing how it manifests itself anyway, and since your wife has neuroLyme, the resulting brain inflammation means symptoms can change by the hour,even.
Not to mention, even when you have resolved one quarrel, the Lyme has not been vanquished, just the bad feelings about one episode of an epic with no predictable ending in sight.
my own neuro brain has led me deep into the rambling weeds for the moment- hope what i'm saying makes some kind of sense to you anyway.
take care- dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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bettyg
Unregistered
posted
dilly, very beautifully and heart-felt said of personal experiences that you too have gone thru and overcome! best wishes to all!
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posted
"Is any of that fair or "rational" in the way you wnt it to be? Of course not. But YOU have the responsibility of allowing yourself to feel anger AND of expressing it constructively."
My biggest problem has been not expressing it constructively. I think I can now, since we are communicating with each other like we never have before.
It is very nice of you to share your personal story Dilly.
Thank you.
Posts: 39 | From NJ | Registered: Feb 2008
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posted
Sounds like you're doing a wonderful job. As a partner, here's my general short list on how to be supportive:
1. Believe her. 2. Let her sleep. 3. Provide healthy food. 4. Take over as much of the disease management as you can (fight with the insurance company; track the symptoms; order the supplements, etc.). 5. Remember that no matter how hard it is to be a lyme partner, it's not as hard as being a lyme patient.
Good luck.
Posts: 204 | From ma | Registered: May 2007
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I guess better late than never. I just wish I could make up for the past.
"1. Believe her. 2. Let her sleep. 3. Provide healthy food. 4. Take over as much of the disease management as you can (fight with the insurance company; track the symptoms; order the supplements, etc.). 5. Remember that no matter how hard it is to be a lyme partner, it's not as hard as being a lyme patient."
good short list! Thanks for the input.
Posts: 39 | From NJ | Registered: Feb 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
quote:Originally posted by hubernacker: I just wish I could make up for the past.
You are.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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bettyg
Unregistered
posted
also, be sure to read LYMEDAD'S LETTER TO FAMILY/FRIENDS; it's in the newbie package I sent you.
to find it quickly; make sure you copy entire package to your wordprocessing software.
then use EDIT, FIND, and type LYMEDAD and it will stop on this 4-6 page letter!! You'll learn a lot from it ok! -----------------------------
posted
I hope I can get my hubby to read this thread. It is so me. Right down to the can't talk, but can type bit.
I think right now that is one thing I'm most scared of. I have the Igenex kit sitting beside me...waiting.
I have not called a dr yet. At all. I haven't been to a dr for me since we first got together 12yr ago and only then because he made the appt and practically carried me out.
I'm so scared the dr will just look at me and shoot me down because I KNOW I won't be able to communicate anything worth a flip verbally.
I don't LOOK sick, and whatever I say will likely come off sounding like I'm a flake. At least, that's what I'm scared of.
And yet I have or have had 60+ symptoms on some list I have (can't remember which one) that only lists like 75.
I've been debating seeking a dr and testing for months now. Finally ordered the kit last week. Now I'm too scared to move forward again.
Posts: 155 | From Texas | Registered: Oct 2007
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bettyg
Unregistered
posted
smurfmom, do you have a good UNDERSTANDING PRIMARY DR? go to them if you do..
who else is supportive if not this person; get them to sign the form.
CHECK YOUR PRIVATE MESSAGES; i thought of someone for you!!!
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posted
hubnacker boy am I impressed by you!!! I was married for 22 years and had lyme for 47. To make it short, he left me for a much younger woman. Said it was all in my head. That was before I found out what I had wrong with me. Geez I would have liked to left me too! I was never hard to get along with -- just sick.
My eyes are bad so forgive my if I missed it but if I may ask what changed your atitude?
I am sure she will be ok with someone like you to support her.
I have been limping along with little to no support and rasied the kids by myself. I had to make the income by myself also but it finished me as I am not able to work any more. I think that is what I miss the most--being able to work at a job.
As for her being on the computer I am sure she is looking for answers and help as I still do it constantly.
I am sending you a pat on the back for helping her. I know she appreciates it.
posted
Don't be too impressed, I never should have let it get that far...
I think the biggest problem was we didn't communicate very well, even before my wife got sick. Honestly, the thing that gave me the wakeup call was lymenet!
I didn't know how to approach my wife, afraid she would be too sensitive to anything I had to say.
I started reading things on lymenet, both what my wife wrote and what other people were going through (eerily similar to her)...it was a painful reality check when I saw how unhappy my wife was with me...
Since then (about 4 months ago), we have grown so much as partners. We talk all the time now, even if it is a tough conversation...it doesn't fester now...
Some people think a person can't change...that to me is horse ****...you have to care enough to change...
I am here for her...always will be...our marriage will be stronger for this...
I know a lot of the people on lymenet know who my wife is, and I thank you for supporting her, even when I didn't...and even against me!
She is a wonderful person...I am not too good at expressing myself, but I love her and I thank God I have her...lyme and all! Posts: 39 | From NJ | Registered: Feb 2008
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
dear Hubernacker-
i do know who your wife is, and yes, everyone who knows her here agrees she is a wonderful person- caring and compassionate and kind and patient as all get out.
I'm glad for both of you that things are heading in the right direction.
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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quote:caring and compassionate and kind and patient as all get out
pretty good assessment
thanks dilly
Posts: 39 | From NJ | Registered: Feb 2008
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
You're a great guy for hanging in there for your wife. Even though you may not have done everything right along the way, you are coming around for her now.
One suggestion I have has to do with you saying that you and she handle being sick differently. Well let me tell you that nothing compares to Lyme. My husband has made the same comment as you and in not so many words has told me to "suck it up" and keep going b/c he has to go to work when he is sick.
I know that I can't compare any other illness I've been through to this so don't assume you'd handle having Lyme better than your wife does. Hopefully you'll never find out.
Posts: 2541 | From Northeast | Registered: Jan 2008
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quote:You're a great guy for hanging in there for your wife. Even though you may not have done everything right along the way, you are coming around for her now.
thanks, but isn't that what a spouse SHOULD do? I know my wife would be there for me...
And you are right about lyme being different...I know that now..tell your husband to get on lymenet. He needs to understand that there is no "sucking it up" when it come to this disease Posts: 39 | From NJ | Registered: Feb 2008
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Hey Hubernacker -
A "little birdie" told me you were handing out flyers and sign toting at the protest. NICE JOB!!!!
Thanks for lending your efforts to this MOST WORTHY cause!
Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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