posted
I have 3 daughters, 2 of which are bilogical, and 1 step daughter. My older girls are in their early 30's and my Lymie is just turning 18.
My ex-husband and I had a nasty custody battle, and he had primary custody of my oldest daughter. My husband of 18 years and I have raised our oldest daughter's on weekends and summer only. They are very close.
My youngest has Lyme and is severly disabled by it. She's been out of school for 2 years and is 18 months into treatment. She is fairly disabled due to to fatigue, POTS and pain. In the last year I can count on 2 hands hwo many times she's been out of the house for something fun besides a Dr Visit. She's getting better, slowly but surely. Her blood pressure is really low and because of the POTS she feels much better laying down than she does standing up.
At first her big sister's were really supportive. They watched Under our Skin and went to a couple of LLMD appointment's. They researched Lyme and asked lots of questions.
Fast forward 20 months, and the older sister's are withdrawn and pretty upset. They ignore their little sister and think she is a drama queen, faking it and think that she is being treated so differently than they were. Of course she is!
Some days my youngest needs to lay down where she's at because if she doesn't, she'll fall down or feels like she's going to pass out. Some days she's so week that she can't carry a glass of water or brush her teeth. So I do it for her. We laugh that it likes she 2 again. But even at 2 she was more independent than she is now.
The big sister's do try and do nice things. But they don't understand that what she really needs is just their company and some phone calls/texts. They bought her a Salon Gift Certificate for a hair cut, color, facial and waxing at a nice salon in our city. It's not where my youngest likes to go, but it's nice. She hasn't used it yet, and it expires soon, so I am going to use it. Who can't use something like that? Anyway, they are upset. My youngest is chemically sensitive and has a person who she's gone to and knows her situation. She loves the way her hair looks (and boy does she need to love something about herself right now). The big sister's see it as being spoiled and can't believe that she wouldn't use this wonderful gift certificate. They put alot of thought into it.
My youngest doesn't want to use it because she is afraid that her hair won't look good, and that it will take too much out of her to spend a day getting pretty. With drive time and beauty time, it will be 6 hours.
The last time the girls were all here, my youngest was laying on the floor, and basically her big sister's just ignored her and didn't ask how she was doing, or if they could help her.
The big sister's complain because little sister doesn't respond to texts/emails. When I've talked with little sister, she said she's just too weak and that she can't. I encourage her to at least respond by saying something like 'feeling sick today, but I love you'. As it is, she ignores the texts/emails.
Anytime they ask her to do something it's for a big ordeal. Like get our photo's taken together. Sounds good. Oh, but at the last minute, let's have breakfast and spend the afternoon shopping and walking all over downtown first, then do pictures.
Anyway, this whole thing is a mess! I am so upset with both of my older daughters, I want to scream. They are so upset, that they don't call or come by anymore. My youngest is feeling sad, lonely and resentful.
I am meeting one of them today for brunch. I am going to try and just listen, and not get defensive. I just need some support and understanding from my Lymenet friends....
Ideas?
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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posted
Let me first say how sorry I am that your family is having to negotiate all of this. I know how hard it is for everyone involved when a loved one is chronically ill. I am the sick one in my family, and even though my husband and I love each other very much, we still have all the same problems with communication and understanding. I honestly do not think I would believe him all the time if the tables were turned. How could you possibly understand if you did not live it yourself?
Have you ever read the "Spoon Theory"? It was written by a chronically ill woman who was trying to explain to a friend what it was like to manage daily life with a chronic illness. It has been so helpful to me, in my understanding of living with a chronic illness for myself.
Sometimes it helps to just be open and honest about what your needs are. Put simply, when I ask directly for exactly what I need, it becomes easier for those around me to help. I have friends who, as we were very close before I got sick, have never once asked me a single question about my health. Or even a simple "how are you feeling today?"
I try to remind myself that it is very hard to see someone you love be so sick, especially if that person might not survive. I try to tell myself that it is probably more of a coping mechanism for them, instead of it being a lack of concern for me.
A lunch with you and the two healthy daughters might be a perfect time to speak with them candidly about what you need from them. Maybe you have already done this, or maybe you are more like my family, and avoid these conversations altogether. Have you tried telling them how their behavior hurts your youngest daughter? In my family, we are getting much better at talking through our stuff. I have learned the more I communicate with my children/husband, the better they understand me.
I hope your family can find compassion and understanding. Te beautiful thing about families is that we are bound to each other so tightly that with a little time and patience, most of these things work themselves out. Good luck. I can only imagine how much more difficult it is to be stuck in the middle of it all.
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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I can sympathize with your youngest daughter. My older sister doesn't believe how sick I am. She is a nurse who helped diagnose me years ago but that is where her concern ended. She has never come with me to a doctor's visit or even visited me at home. She thinks that after I got the two weeks of abx, I should have been good to go.
Now she is all angry that I can no longer help with my disabled mom. She calls me selfish all the time. My mom lived with me 10 months before my sister even took her to her house at all. And I am the one who is selfish.
I do feel bad for you as I do for my mother because you are stuck in the middle. I think your youngest would have to be a very forgiving person for their relationships to work. I am struggling with that now.
Posts: 472 | From New Jersey | Registered: Dec 2007
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Sorry about the situation you are in! I think one of the hardest things about this illness is not having the understanding/support of those around you. Sometimes I even catch myself thinking "Why can't you do...." Don't know what to suggest.
It makes me think of the book about the five languages of love. I can get you the name if you want. Anyway, according to the author's theory we all speak a different language. This is how we receive and give love. Your older daughters are giving gifts, but it just isn't speaking to your younger daughter who probably needs some quality time. Until they speak each other's language better, it won't work. Make sense? They need to try to put themselves into her situation.
By the way, we spoke a few months ago and have seen Dr. M. twice now. My daughter is doing a tiny bit better. I have really appreciated the thorough testing done and like Dr. M.
Thanks and good luck!
Lori
Posts: 312 | From Utah | Registered: Nov 2010
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posted
I am so sorry we and all of our families have to go through this. If our own family members don't believe us why would anybody else? I am lucky that my hubby stands behind me 100%, but his patience wears thin at times and he cops a little attitude.
In this day and age everybody thinks you get sick, go to the doctor, they give you a magic potion and you are all better. Most people cannot grasp chronic illness or the fact that there isn't a magic pill for everything.
You can't force your daughters to "get it", I think if you do it won't create an "honest" relationship. Personally I would take 1 honest relationship than 10 "forced" ones.
As far as the "spoon theory", I use quarters for my theory, I never grasped the spoon thing (probably lyme brain). I ask people if they remember going to the arcade to play video games and tell them they can only have 20 quarters. Each "game" is equal to daily tasks and some cost more than others. Laundry=2 quarters, shower=1, vacumning=2, etc...and when you run out of quarters you are all done.
As for as the gift certificate goes, they gave it to your youngest and she is giving it to you, IMO you don't need to ok it with them. You could let them know that she is giving it you, but you don't need their permission. I would also give them the name of her hairdresser/salon or her card and let them know that she would be more comfortable going there.
I was a hairdresser for 20 years and women are more comfortable changing gynecologists than hairdressers.
I hope it all works out in the end for you all...
-------------------- Down on her knees, she wept on the floor. This hopeless life, she wanted no more. Dead in the mind and cold to the bone, She opened her eyes and saw she was alone. ~Seether Posts: 427 | From Rhode Island | Registered: May 2011
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posted
Plus, I've found that the Lyme makes me dread any change in my routine. Stresses me out something terrible. So, I completely understand your daughter not wanting to go to a different salon. I would rather have a not-so-great hair style then deal with the stress of changing my routine.
Oh, and hair stylists are notorious for trying to converse with you. If you're already stressed out, the stress of having to carry on a conversation with a stranger will take away all of your "spoons" pretty darn quick.
I typically just let my hair grow long and throw it into a ponytail so that I don't have to deal with a salon and such.
Oh, and if it includes a pedicure? Then she'll have to leave the salon with flipflops on so that she doesn't mess up the polish. Already unsteady on her feet? Flipflops would be a nightmare.
-------------------- IgM: [18++,31+++,34++,41++,83-93+] [39 IND] IgG: [41 IND] Positive according to IGeneX. Negative according to CDC. Negative for co-infections. Currently treating for Lyme, Bartonella, Babesia Posts: 225 | From Minnesota | Registered: May 2011
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posted
Seems to me they don't understand anything about the science, the medical aspects of the illness. What about understanding more about what it does to someone?
That it inflames the brain, messes up every function in the body, fatigues us, corkscrews into tissues anywhere and colonizes and inflames, that the body becomes overwhelmed by the inflammation and toxins and the liver can no longer handle chemicals normally, including beauty salon visits!
It's not about that THEY thought the salon gift would be a nice gift - it's about the recipient - does it work for the recipient. Seems to me your daughters need to learn it's not about them, it's about the recipient.
That's the big change in thinking that needs to happen. Service is not about serving your own needs, but someone else's needs. They will grow as people if they can learn this.
I guess you know your kids better than anyone. I know it's easy to be at an impasse with people, but I have found when I can make something more fun for others, we get further. Like when we can make another activity happen out of the situation.
In this case, I would give everyone in the family an assignment - at the next family meeting, everyone bring in a list of 50 ways Lyme disease interferes with physical functioning. That they can find from the internet.
And a minimum of explanation for why that interference happens.
Example: 1) interferes with brain functioning. Why? Inflames the brain. etc.
Next list, maybe 25 on the list - how it can interfere with our social functioning, like 1) can't go to school, etc. That's what everyone's getting caught up in. But you can't understand this level unless you do the first exercise.
Then, 3rd list time: modifications. I'd say the first person to make the modifications list needs to be your youngest daughter - this is the list of what I need to function, and this is the list of what I can't handle.
That list then goes to everyone else, for everyone to discuss how they can modify their expectations and behavior to match that list.
It's going to be an adjustment process for everyone. Normal expectations are going to have to go by the wayside.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Gawd it was hard to read your post without getting disgusted. But you know, until your older daughters or someone they love has to go through a debilitating illness, they are going to think they know better than the patient.
I have to say, there was a time in my early 30s (before I had my baby, before my husband went paralyzed in 2 weeks with Guillain -Barre) when I was the SAME way. I had a little cousin who almost died from kidney failure when she was 2. I was very critical of how my aunt and uncle were handling it. (Seems so pathetic now when I look back how supportive I thought I was being!) They were just trying to get through one day at a time. I thought they should be feeding her a raw food diet (hahah!!) and rehabilitating her that way. Basically, I was an uppity health freak *******. THank God I kept my mouth shut!
I think if I were in your shoes, I would get all Mama bear on your older girls and explain in no uncertain terms that you love them, but you're not putting up with them insinuating that the younger one isn't sick. I'd tell them that I was disgusted with how little they actually care about her and I'd call them out on the presents that have no value to your daughter, but is really about what THEY would like to receive. I'd insist that they acknowledge her true level of illness or BUTT out. Might sound cruel but they'll get over it, especially after they have their own kids. In fact they'll probably come begging your (and her) forgiveness if they ever come down to reality. As a health care provider, you need to set clear boundaries as to what you will and will not put up with for your own sanity. Good luck!
Posts: 42 | From Virginia | Registered: Aug 2011
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I agree with JessJoy - I think you need to set the boundaries of what's appropriate with respect to your youngest daughter. To take the cues from her needs and not the other way around. Once people are listened to and heard, it can get easier. People can learn to work with limitations, not against them.
Posts: 13116 | From San Francisco | Registered: May 2006
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kam
Honored Contributor (10K+ posts)
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posted
I am just able to read the subject line. I have often wondered how to have others experience what it is like to have this.
My first thought was to have them carry a backpack around with about 60 or 100 pounds in it for a couple of days.
Then have them put on glasses that made it more difficult to see.
The sick to my stomach feeling I couldn't figure out. Telling someone to recall what it was like last time they had the flu doesn't seem to work.
The difficulty with the brain is another tricky one.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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