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How are we dealing with our angry/confused/missing family?

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Posted 3/1/2017 5:28 PM (GMT 0)
  • Mom: Is treating me like I'm ignoring her when I'm just too sick to call. She hasn't come to visit in weeks and stopped calling a week ago - she used to call every day. Promised to cook for me, hasn't done it.
  • Sister: Stopped calling, texting, coming over. Hardly talks anymore when I do talk to her on the phone. I think she's mad at me for not doing past life regression.
  • Brothers: Never hear from them.
  • Rest of family: Previous family rift - they're out of the picture
  • Friends: Meh. Never had a strong circle of friends.
  • Husband: Doesn't know how to do anything. Won't take out the trash or clean litter box unless I harp on him. Can only help when I am able to articulate, without emotion, EXACTLY what needs to be done. I do my best. Even then, it's only half done. I'm still running the house despite not being able to climb the stairs some days. He's also coming home later and later and finding lame excuses to leave on the weekends for dumb errands.


I'm losing it over here. I know it's hard for them too, but I kind of feel like: Come on, Kristen needs help right now.

How do you handle your friends and family not getting it? I know a lot of you are going through similar things. I'm really trying to be my own support system and making friends online, but Lyme is so darned lonely. Thank god for my cats.
Posted 3/1/2017 5:36 PM (GMT 0)
I have to limit how much I vent to my husband about Lyme. I think he feels like our lives revolve around it now.
I have shared the link to Under our Skin with my family to help them understand. My brothers will not watch it I am certain. My mom wants to but she's scared.
For household chores having a list that your husband can tick off rather than coming to you for "orders" may be better. Maybe sit down and discuss together what needs to be done daily/weekly and you can check off what you can do or get done and when he comes home he can see what's left.
If you are close to your mom or sister, reach out to them. Be honest and let them know you are struggling without their support. Ask why they've dropped out of the picture. There may be things going on in their lives that they don't want to stress you with. Or it could be that they don't know how to help. Let them know that your hubby needs their support too.
Posted 3/1/2017 5:40 PM (GMT 0)

ChickNorris said...
I have to limit how much I vent to my husband about Lyme. I think he feels like our lives revolve around it now.

For household chores having a list that your husband can tick off rather than coming to you for "orders" may be better.

I limit it too. If I'm sick about venting about lyme...I can assume he's sick of hearing about it.
After 3 years...it gets old. And our lives DO revolve around it...unfortunately.

I don't even give him a list...he is working full time and is thinking of picking up some more work on the side...and I just feel guilty putting anything more on him.
I shouldn't feel this way, but I do.
Posted 3/1/2017 5:43 PM (GMT 0)
friends and family?

Mom and Dad are no long with us.

Don't have any contact with sis and bro.

My Aunt is very supportive...so I have good relationship with her.

Most of my friends are good, too...some better than others'.

Just keep telling myself - that this is temporary...and it will one day be in the past.
Posted 3/1/2017 5:46 PM (GMT 0)
ChickNorris He doesn't do lists. He loses them or forgets. I've tried being honest, talking, etc. He wants to help, but ends up getting frustrated and walking away. I'm pretty over it. He's not Mr. Helpful around the house and never was. I do need to be more honest with my sister. She might be able to handle it. My mom, on the other hand, is in a constant state of defense at what she perceives are personal insults. Constantly, my whole life.

Girlie I got my husband to watch (finally) and he was optimistic. I think he gets that it's hard for me, but I'm not actually asking to be served hand and foot, but he's treating me like I am. So frustrating.
Posted 3/1/2017 5:48 PM (GMT 0)
Make them watch Under Our Skin, I think a lot of people don't get it because it's a hidden disease and has a negative societal stigma. It's almost innate in the carnal mind to stray from a sick person.
Posted 3/1/2017 5:52 PM (GMT 0)
husband wanted a divorce. he claims he gets it but he honestly has no idea what it's like to struggle with invisbile disease, and to go day to day wasting hours going to doctors only to give you a normal clean bill of health, or hours going to get your infrared sauna, chelation treatment, ozone, IV meyers cocktail, salt therapy, etc.
he just goes to work, comes home and does it all over again. it is the most lonely journey in my life.
i wouldn't wish this on anyone.
he thinks he has it bad. he can't even handle a night of not sleeping. Im going on 3 years of not sleeping. he's always the victim
Posted 3/1/2017 5:53 PM (GMT 0)

birthdaysuit said...
Make them watch Under Our Skin, I think a lot of people don't get it because it's a hidden disease and has a negative societal stigma. It's almost innate in the carnal mind to stray from a sick person.

We've watched it - and the sequel.

My husband does sort of 'get it'. (in fact he has LD - but hasn't started treating yet)
He's just not good at taking the 'helm'. He's a big procrastinator...and not very well organized.
When my son was born, I was a stay at home mom...so took care of everything...and he worked .
You know what they say about 'old dogs'..... tongue

I know he's trying - he does a lot of the grocery shopping - sometimes on his way home from work - which is a 10 hour shift...and I know he's tired.
He does do some laundry...and will vacuum when I ask him to.
But, he doesn't quite 'get' how I'm feeling...and how could he? He won't really understand until he starts treatment - but then...who knows what his experiences will be?
Posted 3/1/2017 5:54 PM (GMT 0)
It is hard on friends and family too - but that usually is because they don't understand. We can help those that wish to understand more to understand more, but some have no desire to and you just have to let them be. You can't change that you have these infections right away, and you can't force them to change their minds about the whole thing either. I've struggled with this for my entire life.

Here are some things you can try though:
Watching "Under Our Skin" with them
My link for this is suddenly no longer working, so I'm looking for a good link now.
I've not used this site before, so use caution, but the movie seems to be the real one, although you do have to register for a free account.
picamov.com/play.php?movie=tt1202579

Or, do a search for the movie.

So you know someone with Chronic Lyme disease:
​​http://www.tiredoflyme.com/so-you-have-a-friend-or-family-member-with-chronic-lyme-disease.html#.U3dTc3bbS1t​​​

" Dear Family of a Lyme Disease patient ​​"
/www.lymedisease.org/lymedad/?print=print

Top Ten Things you can do for someone with Lyme
/pghlyme.org/2008/10/21/top-ten-things-you-can-do-for-someone-with-lyme/

10 Things To Know When Someone In Your Life Has Lyme Disease
/www.linkedin.com/pulse/10-things-know-when-someone-your-life-has-lyme-disease-annie-dance

I do hope this helps. Anyone with a chronic health condition will generally loose friends, particularly when it lasts and lasts, but any that stick with you, are really incredible people usually. Most all of my friends have or have had these infections, as they are the only ones that are accepting of my "here now, gone in a minute" routines that I simply can't help.
Posted 3/1/2017 5:56 PM (GMT 0)

lymehater said...
husband wanted a divorce. he claims he gets it but he honestly has no idea what it's like to struggle with invisbile disease, and to go day to day wasting hours going to doctors only to give you a normal clean bill of health, or hours going to get your infrared sauna, chelation treatment, ozone, IV meyers cocktail, salt therapy, etc.
he just goes to work, comes home and does it all over again. it is the most lonely journey in my life.
i wouldn't wish this on anyone.
he thinks he has it bad. he can't even handle a night of not sleeping. Im going on 3 years of not sleeping. he's always the victim

I'm so sorry, lymehater...so did he change his mind about the divorce?
Posted 3/1/2017 6:12 PM (GMT 0)
Family, all I have is my grown daughter. She's been sick too, but not too sick to want to come with her husband every weekend for a home cooked meal. I'm speaking mainly from the end of 2015 while I was trying to take Flagyl. I just needed to be left alone to cocoon. They even saw what meal prep did to me when I forced myself.

She got angry with me, talked about "might as well move away".
I was in constant fights with my male friend, while though he was helping me out here cleaning and stuff (and getting paid for it), was always pushing my buttons, unconcerned what the stress was doing to me.

My anger towards everything got scary for me, I think due to the Flagyl itself, and I gave up and stopped treatment to make everyone happy. And it did. I will never forget the big smiley face my daughter sent me when I told her I'd stopped taking it because of all the pressure, I was giving in.

My male friend finally feels sorry for me and tries to make me happy, but I think because they are both sick that they don't care if they stress me or not sometimes. They let themselves get in the way.

Anyway, I have these wonderful friends I've made from this group, and other supportive people on line, it's perfect. All I have to do is walk away from the computer and it doesn't scream at me!
Posted 3/1/2017 6:57 PM (GMT 0)
I will just add i clean my cats litterbox and feed it , play string chase with it, and it still avoids me afterwards. Loves my wife though, sits on her lap. They must sense illness or something.
Posted 3/1/2017 7:08 PM (GMT 0)

Serfr said...
I will just add i clean my cats litterbox and feed it , play string chase with it, and it still avoids me afterwards. Loves my wife though, sits on her lap. They must sense illness or something.

My cat loves me more than my husband.

She was my son's cat for about 10 years until he moved out of the house...
My husband says it's because I 'smell' like my son. (that sounds kind of strange....) I don't mean like B.O. - but hubby says our skin smells the same...I know sounds weird.

I think it's partly because I am home more.
Posted 3/1/2017 7:23 PM (GMT 0)
If i pet my cat just once, it will stop and proceed to clean itself for ten minutes. So I stopped because it would swallow too much fur and then hurl later. Im not dirty, shower every day.
Posted 3/1/2017 8:32 PM (GMT 0)

Serfr said...
If i pet my cat just once, it will stop and proceed to clean itself for ten minutes. So I stopped because it would swallow too much fur and then hurl later. Im not dirty, shower every day.

lol! I believe you (about not being dirty) - cats are just funny like that.

The other thing my cat does - when my son comes home...she'll jump on his lap and reach up and lick his ears - the inside of them..only him though...doesn't like mine. (and definitely not my husbands')
Posted 3/2/2017 12:59 AM (GMT 0)
You guys have weird cats.

My favorite has been called "Dr. Fuzz" for her healing tendencies. Actually we pay this back and forward, her and I. I really noticed it after my upper arm/should reconstruction she would stretch out her front legs up to my shoulder while lying against the front of me and she would purr like crazy. As if she sensed issues there that she could heal with her warmth and running motor.

When she's not feeling well I rub her lower jaw. Supposedly that releases feel good cat hormones-like they do when they rub their face on everything.
Posted 3/2/2017 1:14 AM (GMT 0)
My mother is my main chauffeur and a great support. We've gotten much closer since I've been sick. She stayed with me in Florida when I was at the clinic.

My hubby's mother and dad are good people. My mother in law stayed 3 weeks in Florida with me. They always call to see how we are all fairing. In fact we visited with them on Saturday.

My kids are young so I try not to be too down with them around, but they know that I'm not optimal. They enjoyed Florida when they came with my mother.

I'm actually treating the kids with herbs (just in case....especially my youngest).

My husband is very supportive even though I know it gets to him. Us not doing all the things we used to do. Just not being spontaneous with things is a bummer. He actually drove me to Fl and flew back when it was time to come home and drove from there.

My brothers and I communicate as much as we ever have. Text with my middle brother quite a bit.

I have very supportive friends and co-workers. They don't know the extent of what's wrong, but they know I'm not up to par to work in the office.

So I do consider myself very blessed.
Posted 3/2/2017 1:28 AM (GMT 0)

julymorning said...
You guys have weird cats.

They're all kinda weird, aren't they? Weird and wonderful smilewinkgrin
Posted 3/2/2017 2:28 AM (GMT 0)
Daisies, just another jog in the road of our lives that brings in a whole new language all our own. I bet you can think of other things you've done that consisted of terminology only a select group would have a clue what you're talking about.

I know I can. This one tends to get fairly technical, which makes this even more remarkable that while we can't remember what we are doing for more than a few seconds, or few feet, which ever comes first, and yet we know what a Cytokine Storm is, and how to prevent it!
Posted 3/2/2017 2:44 AM (GMT 0)
Cats carry bartonella and toxoplasmosis....no wonder theyre weird
Posted 3/2/2017 5:03 AM (GMT 0)
I'm so thankful for you all.
I wish I wasn't so out of it and exhausted so I could tell you more.
I'll just say this tho I wish I wasn't so raging angry about the ones who don't get it
Posted 3/2/2017 4:15 PM (GMT 0)
My first bout with lyme was the toughest in regards to friends and family. I found that a lot of people (friends and family) didn't know how to react to lyme. People "understand" things like cancer. They know someone who has it and are familiar with the terms that go along with it- chemo, radiation, ect. Yet the most people know about lyme is that we got bit by a tick. They don't understand how tough it can be to deal with. So they don't understand why today we have a smaller number of spoons than yesterday. Family and friends tend to forget that you can not eat a lot of things so it makes holidays and get togethers difficult. My mom has been my biggest supporter through my ordeal, but even she has a hard time grasping that on the outside I look fine while on the inside I'm doing my best just to remaining standing. My dad never understood how bad things got (my 1st bout I was misdiagnosed for so long I was told by the doctors that they would make me comfortable in my remaining time) and he still to this day things I was just making up how bad I felt because outwardly I looked fine. A lot of friends treated me like I was already a ghost. It was easier for them to hang out with people who weren't sick. So the few friends that stayed have become a tighter knit group. I have recently relapsed and I've been very thankful for the friends who have stuck with me through the good and bad. One of those friends is now my husband. Im trying to find a balance of keeping him up to date on how I'm doing and not freaking him out. He is awesome at helping me around the house- but he won't touch the litterbox with a 10 foot pole. lol. I agree with the list suggestion. We have a to-do list on the fridge. Whoever checks off more boxes gets their pick for date night (or whatever new gadget or gismo). The thing is just to be open and honest with each other. Somedays that means I need to take a 4 hour bath and stay in bed all day- while for him that means he needs to go golf with the guys while we both take a break from pills and doctor visits and a lack of spoons.
Posted 3/2/2017 5:44 PM (GMT 0)
I love the spoons! I'm going to buy a box of plastic spoons and put them on the kitchen counter, throw one in a drawer during the day or week so my husband will have a non verbal way of telling where I'm at. He's been an understanding helpful loving supporter but he really doesn't understand it all and after a recent raging meltdown he has decided he should go to my next LLMD appt. thank goodness.

My dogs, they're the best. We have two blue Heelers that love me and take care of me and are like glue, they must know I'm sick.

My mom is my biggest supporter, she has Lyme and is treating all naturally. Every time we see each other she has a load of new stuff for me to add to my healing.

Friends have dwindled to just a handful and that's ok with me. They may not understand it all but they don't need to they just support and help. Plus I just don't have the energy to deal with the now distant friends. AND I still don't know how to explain it to people who do ask??? Is there a short version?


My daughters and their husbands have been wonderful in every way but then I raised em lol. They bring help, food, hangout and laugh and talk over each other and we're all exhausted when they leave.
The three grand babies under 4 make me laugh and that's my favorite thing to do!
I'm thankful that they all live minutes away.

So how come I still get so freaking angry and lose it ? Why is it so hard to accept this stuff? I a little ticked at my LLMD , he told me at my initial visit in October that he could have me back on my motorcycle in a year then at my last visit when I asked if that was true still he says "well sure on a trike" wth

See here's comes the gritching hag
Posted 3/2/2017 6:01 PM (GMT 0)
No one can predict how long it will take for a person to heal - not even LLMD's. Any time they do, they do a great disservice to themselves and the patient.

Family that understands you need their help and are there, even if it is just for a quick visit, are much needed!!!
Posted 3/2/2017 8:09 PM (GMT 0)
I emailed my husband 4 documentaries but he only watched two about 30min long interviews. He didn’t watch Under our skin and Emergence. I asked a few times why not then he just said he had watched the other two. Great…I guess Under our skin and Emergence are ‘too long’.

He is a good guy but I believe he has no idea how hard it is for me. I guess he is afraid to find out that’s why he stopped watching the documentaries. I don’t know. What I do know is that I’m sick of this disease and complaining. I’m scared to look into treatment because probably I would start feeling even worse, herx etc. I don’t think I could handle that and he couldn’t either. However, I know that without treatment I will never get better.
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