posted
I am struggling with some family members who do not understand how debilitating, painful, scary, and confusing this disease can be - as well as how it effects your overall wellbeing - does anyone know of any links I can share with them to help them understand? I am having a hard time finding ones that aren't PURELY medical that they would understand. I have two older brothers, and my mother (she is very understanding but does not understand a lot of the medical terms) and a completely abscent father (he is in my life about 4 times a year.) - but I want my family to know what is going on with me. Sometimes my brother asks me to drive down to Kentucky to babysit - I live in Cleveland - that is a 6 hour drive for me - (FOR ONE NIGHT) - and I have to tell him I am not feeling well, he does not understand. They also scough sometimes and say "you're ALWAYS sick" -- but YES I AM until I get fully treated I WILL BE and it hurts that because they are not in my situation will they EVER understand? I lost vision in my right eye when I was 18. People got over it in a few days - it was no longer a big deal to them.. but I couldn't even watch a movie at HOME, learn how to DRIVE, and I struggled VERY MUCH with graduating high school - I missed my own prom - I couldn't see ANYTHING straight - it was all a blur, and worse I had vertigo and was very depressed after since I was so young and scared. They told me I was going to be in a wheelchair within the next 5 years. (I DO NOT HAVE MS SO THEY CAN KISS MY YOU KNOW WHAT HA HA) - but at the time I felt like my life was OVER. Now that I am having the same symptom in my left eye (the one I can see out of) I am EXTREMELY scared to GO BLIND - and I want my family to understand or at least be AROUND to support me. I am older now, and I am in better control of myself and if I have to walk it alone, then I will - but if anyone has any advice please share with me. Thank you for reading. -Laurajeanne
PS: if someone will PM me how to make this easier for others to read who have vision problems, please send me the CODE to break this up into better fragment. thank you. I understand some have vision problem like me.
-------------------- I'll make the most of it, I'm an extraordinary machine Posts: 43 | From Cleveland | Registered: Dec 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- LauraJeanne,
You asked how to make this easier for reading. When you write, just use the RETURN BAR bar every couple of lines or to separate a particular question or point. Something like this will help more be able to read it and you'll get more replies.
I'll read over it later but I was able to interject some white space at what seemed to be logical places. Hope that helps.
Good luck.
=================
LauraJeanne's original post:
I am struggling with some family members who do not understand how debilitating, painful, scary, and confusing this disease can be - as well as how it effects your overall wellbeing
- does anyone know of any links I can share with them to help them understand?
I am having a hard time finding ones that aren't PURELY medical that they would understand.
I have two older brothers, and my mother (she is very understanding but does not understand a lot of the medical terms) and a completely abscent father (he is in my life about 4 times a year.)
- but I want my family to know what is going on with me. Sometimes my brother asks me to drive down to Kentucky to babysit
- I live in Cleveland - that is a 6 hour drive for me - (FOR ONE NIGHT) - and I have to tell him I am not feeling well, he does not understand. They also scough sometimes and say "you're ALWAYS sick"
-- but YES I AM until I get fully treated I WILL BE and it hurts that because they are not in my situation will they EVER understand?
I lost vision in my right eye when I was 18. People got over it in a few days - it was no longer a big deal to them..
but I couldn't even watch a movie at HOME, learn how to DRIVE, and I struggled VERY MUCH with graduating high school - I missed my own prom -
I couldn't see ANYTHING straight - it was all a blur, and worse I had vertigo and was very depressed after since I was so young and scared.
They told me I was going to be in a wheelchair within the next 5 years. (I DO NOT HAVE MS SO THEY CAN KISS MY YOU KNOW WHAT HA HA) - but at the time I felt like my life was OVER.
Now that I am having the same symptom in my left eye (the one I can see out of) I am EXTREMELY scared to GO BLIND -
and I want my family to understand or at least be AROUND to support me.
I am older now, and I am in better control of myself and if I have to walk it alone, then I will - but if anyone has any advice please share with me. Thank you for reading.
-Laurajeanne -
Posts: 48021 | From Tree House | Registered: Jul 2007
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Hopefully your family will be supportive, but unless they actually have Lyme Disease themselves, they will never fully understand.
Its pretty normal not to understand what someone else is going through if you have not walked in their shoes.
Just having them stand by you will be the main thing. Don't expect them to ever totally get it.
The good thing, is we are all here and we all understand!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- First,
Be very clear with both yourself and them whether:
1) you asking them for understanding and money to help with treatment;
2) if you are asking just for them to just understand - to learn more; or
3) to understand and help you locate resources within your means. This means they become more educated and make some calls, help you research various paths - without judging.
If just to understand, you will have a far easier task but it's still a surprisingly steep uphill journey for most lyme patients regarding this issue.
-----
If they have money to help and you ask them, I see no problem (well, that depends on a lot of other issues, though).
But if they don't have money to help you and you just want them to understand, I would handle that differently so they don't feel guilty.
Still, even if they can't help financially (directly) they could help you find ways to obtain the best that you could with your resources.
And you may not want them in the money part of this if their judgement would be tied to every decision you make.
Now, if they do have money and could help, most parents of even grown children would be very happy to help. But lyme changes everything, thanks mostly to the IDSA doctors saying lyme is really no big deal when we know otherwise.
But the truth is that lyme takes away a lot and family tops that list. It amounts to being buried alive in an invisible lie constructed by the IDSA. And we have to fight hard for our breath - for our right to be among the living.
If there is anyway that your family members can be open to truth, that is the best. No one should loose family and friends over this if there is anyway to prevent it.
Education and communication can open the doors.
Still, since much depends on the life philosophy of each member of your family - and the influence each has on the other - consider how each person SEES the world. Not just how they see you, how do they see the world?
You might also get some advice from a LL counselor.
Denial also runs deep. For parents who love, it's very hard to see even adult children hurting and they'd rather block it out. It may be easier for them to attribute your situation to mistakes than to a devastating and frightening disease process.
And guilt over not being able to help financially can also cut them down where they stand.
Family dynamics are very much involved and if this is approached in the "wrong" way - that can change your relationship on all levels. It sure did for me.
So, please know that you are worthy of understanding and all the support you need. They just may not be able to give it - for whatever reason.
If you know they can't help financially, be very clear at all times to NEVER say anything that might have them feel guilty about at what is MOST important is simply their understanding and acceptance of you doing the very best that you can to take care of yourself.
Still, even without asking for financial help, that is very difficult for most lyme patients.
I suggest first, these few sources:
Get this DVD and this book. Both can be obtained from your library or they can order by interlibrary loan - or your local lyme support group may have them to loan.
I am trying to type like you said to help others so they can read this better.
I do not ask for help financially from other family members, my Mom sometimes gives me (well she often times gives me) support financially but she is also there for emotional support.
My brothers and my father I would like just their emotional support. I do not need their money.
My father has only really given money in my life. He is recently married to a very NASTY woman. And my old stepmom of (25) years. He left her, like she meant nothing. I adored her. I still have communication with her.
Your situation with your father sounds a lot like what is happening to ME right NOW with this new woman he has married. That makes me sad for you.
Thank you for your words, they are very sobering and written well. As well as the links.
Thank you
suthrn, I understand what you are saying, but I am a graduate of Science in Psychology, and plan to go to get my PhD... I have always thought I have a very compassionate heart. It has always confused me when people turn the cold shoulder. Thank you for your words. Sorry if I am not wording myself well.
I am just so afraid of my loss of vision which is occurring. This is so hard to do alone. I don't like to talk with a therapist. I have seen one in the past, actually a few different ones. And since my area of study is psychology I often am jaded towards approaches.
I think maybe I will start yoga though, I have heard a lot about that.
I am just so fearful of losing my vision. And currently, I am just dating a new guy. I am blind in my right eye and he does not know this.
I do not tell him because I do not want him to think I am sickly. (ha ha).
I know I should tell him because honesty is so important... but I carry some things on my own. I do not want to scare him. He wants to see the new Avatar movie in 3d. I cannot see in 3d! So I hope it is not too hard on the eyes... I will be sitting there for 2 hours not being able to see the movie I would be able to see it in 2d though. Ha Ha.
-Laura
-------------------- I'll make the most of it, I'm an extraordinary machine Posts: 43 | From Cleveland | Registered: Dec 2009
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posted
Hi - I have no idea to the extent that this product could help with your eye situation - I drink mangosteen juice and it stops all inflammatory Lyme eye symptoms for me. We have another long post on the topic, Mangosteen, if you want to read up on it.
Posts: 13116 | From San Francisco | Registered: May 2006
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I am sorry about your eye problems. I don't have that from Lyme, and I'm new here, so I don't have advice for you about that.
From what I've been reading, it does seem like many people report that the various strange things caused by Lyme, like vision or hearing loss or brain issues, can completely clear up with treatment, so it's entirely possible that your vision issues will not be permanent.
I hope your new guy turns out to be understanding and supportive enough that you can talk to him.
Regarding family emotional support, I asked my family to watch the DVD of Under Our Skin with me. They still don't understand, but they were more supportive after that.
I am single, in my 40s, living alone, and I have parents and a brother who I'm close to, and some very supportive friends. It helps if you have somebody who loves you anyway, even when they think you're an oddball and they don't understand.
I told my parents, if only I had gotten cancer or something better known instead of Lyme, they would have understood and supported me a lot more.
They still don't think of Lyme as a serious disease, they don't grasp that it can't be completely eradicated (so future relapse is always a risk), and they don't understand my anxiety about the future. My mom sometimes says I am being melodramatic, and making myself sick from worrying unnecessarily. I think she is wrong about that.
I got my dad to read the book Cure Unknown. My mom read the first part of it. Then they understood more about the disease and the politics, so I was able to talk to them more about my symptoms, worries, problems finding a doctor, and problems paying for treatment.
Good luck to you!
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Laura,
With vertigo as you experience,
I seriously caution you NOT to go see AVATAR. Seriously. With the kind of visual stuff you have going on - and all the other sensory sensitivities from lyme, I'd hate to see you find that this was the straw to break the camel's back.
Such movies are very powerful on all the senses - and the adrenal system - and the heart. All of that is on the line with lyme.
I also urge you to have an honest talk with your new friend. He can go to the movie with his buddies.
He will either be understanding or he won't. You cannot be putting yourself in danger's way to try to be someone you are not. And you need to find out if he's someone who can be flexible.
There are still plenty of ways for the two of you to enjoy time together at events or in environments that will work for both of you.
If he chooses to stick around for your personality and company (and if you still like his), the two of you can watch AVATAR on DVD in a couple months and he can then share his favorite parts - and caution you when to close your eyes or turn down the volume.
** edited to add: As you are just beginning to date this guy, and not about your vision, but before you start any kind of kissing, he has a right to know about you and lyme and where you are in your treatment for that.
So, as hard as it is, I hope you can have a nice talk about what matters most: how two people in this world can enjoy each other's company in an honest relationship that is healthy for them both.
Give him a chance. Don't expect a particular outcome. Just be yourself. Even if this does not work out as you like, you still have a good chance for a strong future.
Good luck.
===============
Hints for how to survive a movie:
* Select one set before 1980 so there is likely to be less music with heavy bass pounding
* "Chick flicks" (that hopefully also have a good script and good acting) really are safer for the senses than the Hollywood action packed events.
But, even a soft movie can be surprising. For instance, in "Marley and Me" I had a seizure from a dog bark. Now, of course, I knew there would be barking and I was prepared. But if the dog is not on screen when the bark is sounding, that is the big startle. I was not expecting a bark with no dog in the frame.
This technique is used dozens of times in most movies. The sound precedes the visual bringing your attention around to it. It's mostly used in action movies, though, so I let my guard down.
I also was not expecting the bark to be the vibration equal to an explosion from mid-earth but the new sound techniques are just so much fun for directors. That was no normal dog bark.
* Avoid the previews. Go in, put a jacket on your seat and then wait out the commercials and previews in the hallway.
* Take both ear plugs AND muffs. Construction ear muffs or something like the new BOSE QC 15 (their best). you can check out their site. They have a $25.00 month plan.
To be clear, ear protection will still not shield you from the deep, intense vibrations as those travel through your skin, bones and through your nose. The vibrations can be unsettling so use all your biofeedback calming techniques and other ways to avoid nausea (GINGER capsules beforehand).
You should know that no matter how much you plead with a theater employee to turn down the volume, they will NOT do this. They say they will, and they will say they did. But, in my own personal poll, only one time in ten does anyone adjust the volume.
Some even say there is no way to do so. In some movies, I am not the only one bothered by this - and even at my worst I have the best manners in the world - but once, even with 7 others asking with me, the employee said they are not allowed to touch the volume or even ask. It's pre-set according to the movie contract to be at a certain decibel level.
- Ear protection is also vital in the rest room where the cacaphony of flushing and hand dryers can bring down the best of us.
* Take sunglasses in case of explosive visuals, etc.
* Sit in the back, on an aisle so you can bolt fast if you have to. By sitting closer to a center section, you can be farther from the walls that often shake from the movie next door.
Look around and try not to be right up against any speaker on a wall or over head (if there is a balcony of any sort).
* When you feel the room shake from movie's next door, take your feet off the floor so you get less vibration.
* Keep a bag handy in case vertigo causes vomiting. Ginger capsules can help prevent that to a degree.
* Know where the emergency/back exit is as and park near that and exit out of that door to avoid the crowds and loud/flashy lobby afterward.
* Pace yourself. Plan to be carried out and taken home immediately afterward. You may be fine, and if the adrenal is pumping (as Hollywood intends) just let your body settle down a bit before agreeing to go roller blading right away.
You may be okay walking on your own but you also may need someone to walk right next to you, supporting your arm. This helps to keep from falling if vertigo is acting up.
* You can get some vestibular therapy to learn more survival skills.
* Try for time of the day / week when the theater is less busy. Even though more expensive, the early evening hours are less of a mad rush, hence a bit safer for those with sensory challenges.
* If you know someone who has seen the movie you plan to see, ask them beforehand what you might need to be careful about.
* Keep a great sense of humor at all times. Really.
I was actually able to pull off seeing some movies if I took all the steps above. However, the people who make movies, apparently LOVE to make people jump. For some lyme patients who have seizures from startles (or even just have adrenal exhaustion), this sensory assault can just be too much.
With treatment, though, most find this gets better.
My path seems to be taking a while so, I got a nice TV and invite friends over for a movie now and then. My friends often enjoy that better than in the theaters. Even many "normal" people find the sensory toll of most movies to be too much.
I don't mean to spoil your fun but going to a movie can be harrowing experience for many with health concerns. Your body will appreciate not being asked to give more than its got.
Still, if you have to decline one fun event, be certain to give yourself another enriching experience - or a raincheck.
This is not about deprivation but, rather, about giving ourselves the gift of some methods to best enjoy life while healing. -
[ 01-16-2010, 07:23 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
LIghtatheend - I really think we should chat. I have read your other post and we have many of the same experiences and symptoms to a T. I also forgot I went camping in Ohio Pyle as well. These are all near the areas you got bit by your tick. The fever was incredible - I keep getting it. The aches horrible and especially in my knees and my hand sometimes as well. Vertigo that was like spinning up and down not around and around. Neck stiffness and could not move head. Heart palpitations, Bell's palsy at times Comes and goes like rubber band Headache... I think maybe you may have had a meningitis (aseptic) with the first bite of your tick like I did as well.
KEEBLER Thank you for ALL YOUR HELP I APPRECIATE IT SO VERY VERY MUCH.
All of you thank you for welcoming me to your community.
-------------------- I'll make the most of it, I'm an extraordinary machine Posts: 43 | From Cleveland | Registered: Dec 2009
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