posted
Hi everybody, its been a while since I've posted, --unfortunately that means I'm doing much worse instead of otherwise.
My dilemma is, being so disabled by illness, I'm trapped in a very difficult situation (or so it seems for the life of me).
Since coming down with full blown symptoms of Lyme, Babesia, Bartonella, and whatever else, at age sixteen I've been unable to work, and now can only go to school on a very limited basis. What makes this relevant to mention is that being too ill to work means I have basically no money and am forced to be totally dependant on my parents.
Unluckily, one of my parents is really emotionally ``unstable'' and has anger outbursts all the time that are almost-totally random (I think this is probably the worst kind, since you can't prepare yourself, and can avoid it so little you are always fearful and on the edge) which torment me and (at least) agitate everybody else. They almost never are directed personally at me but they are so loud and nervewracking and our house is small.
As awful as it is to say a lot of times I feel very much anger and hate against this parent, because after (& during) these outbursts my heart rate always goes through the roof and afterwards I feel even worse and exhausted.
It feels like this illness makes me so much more susceptable to stress and I am also the most incompacitated by the stress and the anxiety of always being on edge, though everyone else is too (though I'm not sure to what degree)somewhat. My parents always tell me: don't worry, you'll get better, but its really hard for me to believe I can take all this stress and anxiety and still recover, since stress impairs the immune system and I feel magnitudes worse after going through this type of situation. Now I'm having what I think are panic attacks all the time and know (for me) this is not a disease symptom per se since I've had many times where I was more exhausted but not under so much stress and never got them.
This isn't something which can be made to disappear or to change just by talking about it with my parents, even in the most serious way, it's Far beyond that. Everyone knows what is happening, but nobody knows how to stop, or lessen, my one parent's anger outbursts. Solutions like that person moving out etc. aren't possible because they are also chronically ill (in a different way) and very emotionally fragile-- so probably would be devestated if the rest of us firmly demanded this. None of this is going to change.
Because of this illness I can't work anywhere near enough to live on my own so I'm trapped here. I don't have any friends who can step in and offer advice or temporary solutions because all my friends forgot about me a long time ago in the aftermath of becoming sick. I guess I'm not enough of a person to inspire any reciprocal caring (at least not anymore). Do anyone happen to have any advice or suggestions that I've somehow passed over?
I know many or most or all of the people here have endured worse, but just for me, I'm afraid all together this is too much to endure. Every (conscious) moment of peace and rest feels stolen away. I'm so weary from it all and my will is worn to nothing. I'm so tired of trying to believe in something that makes it worth enduring.
It feels like whatever that was has already been destroyed or lost, and maybe it is just a vanity to keep on grasping for that something to believe in?
Thank-you for reading,
P.S. Sorry if this letter doesn't make sense; I somehow lost the first version and it was tough rewriting it from scratch.
Posts: 122 | From San Diego, CA, California, United States | Registered: Mar 2005
| IP: Logged |
MagicAcorn
Frequent Contributor (1K+ posts)
Member # 8786
posted
Wow!! Sunnyslumber I am so sorry for you. I wish you the best in coping with your very tough situation.
Has this parent been tested for lyme also? Since family members live and visit the same areas it is likely they may also have been bit.
Uncontrollable and random outbursts can be a very scary lyme symptom.
I'm sending you a big healing group hug.
Acorn
-------------------- Posts: 1279 | From In hiding | Registered: Feb 2006
| IP: Logged |
I'm sorry for your situation, and I'm glad you can write about it. I'm sure there are others in similar situations who haven't been as impowered as you. Good for you for finding a voice!
As for resources, while you can't change the behavior of your less than healthy parent, it is possible that you may be able to get some help with how their behavior effects you.
Just having lyme, etc and being 16 and lossing friendships is enough stress for one, and reason enough to seek the assistance of a counselor or therapist.
I can tell you are resourceful since you posted here. Places to look for a therapist or good counsel include your church, school guidance dept, local social service agency, your LLMD, your primary care dr., and any trusted family or friends.
Sometimes it's really nice to have someone to help you develop coping skills who you have never known before, and who makes their living doing such, but it's best for you to feel it out.
I wish you health and wellness!
Posts: 663 | From NH USA | Registered: Sep 2004
| IP: Logged |
hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
You are in my prayers. Hiker
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8890 | From Illinois | Registered: Aug 2004
| IP: Logged |
My background is a bit similar to the one you're dealing with, having one parent who broke out in fits of rage for no reason.
This is a hard thing to deal with, and has to be doubly hard with one or more in the family affected by lyme.
I can't give you any coping tips with the parental rage that you probably don't already have, other than to remove yourself physically if possible....even if only to another room.
I am confused as to whether you are 16...or older? I get the feeling you are saying you are older?
Would it be possible to get to a support meeting where others with lyme could be a support for you? You could find others your age in the same situation.
Don't give up hope Sunny, keep reading here. Many, many lymies get well and go on to lead active lives! I'll be praying for your situation, your temporary situation that is.
posted
Sweet Heart, I am thinking good thoughts for you. That a solution will come your way. I am sorry you are having to endure this.
Have you talked to your LLMD? Maybe they have some ideas for you. Some way to eleviate the stress it causes you. I wish I could be of some help.
Head phones maybe so you don't have to deal with it.
A good mental health professonal for your parent. Maybe talk to your other family memebers. You shouldn't have to live with this and neither does your other parent. I hope you can find a solution. I'll send good energy your way.
Love & Light Posts: 188 | From NM | Registered: Feb 2006
| IP: Logged |
posted
Wow, I'm so sorry, Sunny! That has got to be really rough! CAn you get this parent checked out for Lyme and bartonella??
I would also chime in with the other posters who mentioned counseling through a church or community organization. It can help more than you might think.
Just having someone listen to you is a great source of help.
I too, will be praying for you.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
I would contact community social services to see what programs , stipends, resources you are eligible for/ qualify. Perhaps, a lyme support group can also direct you for help.
Hang in there. You will find a solution . Prayers are with you. --------------------------------------------------" The absence of proof is not proof of absence."
Posts: 719 | From Delaware | Registered: Jan 2006
| IP: Logged |
bettyg
Unregistered
posted
Breaking this up for us neuro lymies to read.
Sunny, please use the enter key more often and double space between each paragraph please for us neuro lymies to be able to read. We thank you!
quote:Originally posted by sunnyslumber:
Hi everybody, its been a while since I've posted, --unfortunately that means I'm doing much worse instead of otherwise.
My dilemma is, being so disabled by illness, I'm trapped in a very difficult situation (or so it seems for the life of me).
Since coming down with full blown symptoms of Lyme, Babesia, Bartonella, and whatever else, at age sixteen, I've been unable to work, and now can only go to school on a very limited basis.
What makes this relevant to mention is that being too ill to work means I have basically no money and am forced to be totally dependant on my parents.
Unluckily, one of my parents is really emotionally ``unstable'' and has anger outbursts all the time that are almost-totally random
(I think this is probably the worst kind, since you can't prepare yourself, and can avoid it so little you are always fearful and on the edge) which torment me and (at least) agitate everybody else.
They almost never are directed personally at me but they are so loud and nervewracking and our house is small.
As awful as it is to say a lot of times I feel very much anger and hate against this parent, because after (& during) these outbursts my heart rate always goes through the roof and afterwards I feel even worse and exhausted.
It feels like this illness makes me so much more susceptable to stress and I am also the most incompacitated by the stress and the anxiety of always being on edge, though everyone else is too (though I'm not sure to what degree) somewhat.
My parents always tell me: don't worry, you'll get better, but its really hard for me to believe I can take all this stress and anxiety and still recover, since stress impairs the immune system and I feel magnitudes worse after going through this type of situation.
Now I'm having what I think are panic attacks all the time and know (for me) this is not a disease symptom per se since I've had many times where I was more exhausted but not under so much stress and never got them.
This isn't something which can be made to disappear or to change just by talking about it with my parents, even in the most serious way, it's Far beyond that.
Everyone knows what is happening, but nobody knows how to stop, or lessen, my one parent's anger outbursts.
Solutions like that person moving out etc. aren't possible because they are also chronically ill (in a different way) and very emotionally fragile-- so probably would be devestated if the rest of us firmly demanded this. None of this is going to change.
Because of this illness, I can't work anywhere near enough to live on my own so I'm trapped here.
I don't have any friends who can step in and offer advice or temporary solutions because all my friends forgot about me a long time ago in the aftermath of becoming sick.
I guess I'm not enough of a person to inspire any reciprocal caring (at least not anymore).
Do anyone happen to have any advice or suggestions that I've somehow passed over?
I know many or most or all of the people here have endured worse, but just for me, I'm afraid all together this is too much to endure.
Every (conscious) moment of peace and rest feels stolen away. I'm so weary from it all and my will is worn to nothing. I'm so tired of trying to believe in something that makes it worth enduring.
It feels like whatever that was has already been destroyed or lost, and maybe it is just a vanity to keep on grasping for that something to believe in? Thank-you for reading,
P.S. Sorry if this letter doesn't make sense; I somehow lost the first version and it was tough rewriting it from scratch.
Sunny, do either of your parents work for someone who has educational programs: anger management, etc. or employee assistance program where they go to a psychologist and talk for 30-60 minutes. The state of Iowa offers 3 FREE sessions to an employee. Very helpful.
Your parent could be coming down with Alzheimer's disease or dementia. A MRI of brain would help to determine this.
IP: Logged |
posted
Thanks Acorn, Achey, Kiker, Meg, Yemaya, Lymetoo, Iceskater & Bettyg for your advice and support. It's much appreciated. Sorry to take days to get back to you sll; I'm taking a tough drug, and it has felt recently like the part of my brain that connects feelings to language got "deleted." In other words, a really bad case of writer's block.
Also I didn't mean to imply I was sixteen -- I'm 21 so that was 5 years ago. It probably would have been better to use college in place of "school."
I'm going to try hard to follow up on your suggestions. Don't think my parent's employer has any kind of psychological support system since it's pretty small. Anyways my parent doesn't like to use counseling (we've discussed that) since they view it as trivializing; I think they view it as if by going to counseling people are suggesting your problem is psychological.
Acorn: They actually did go to my llmd after I kept bugging them about it a while back. The llmd thought they might have a coinfection but probably not Borrelia. Unfortunately their WB from Igenex was negative for IgM and equivocal for IgG I think. In both cases most of the bands were (-) but they did test (+/-) for a few of the bands I believe I've read to be specific to lyme or to spirochetes (I think 29 or 31 but I don't know where the test results are).
They tested high positive on the Babesia antibody test (done by Sonoma County) also and were taking medication for that for about 3 weeks but didn't notice any changes and stopped.
Since their anxiety and sudden outbursts seem to me a lot like "lyme rage" I've tried to mention lyme disease/coinfections many, many times and have written descriptions (referencing LymeInfo, Pubmed etc. ) trying to clarify why I think it could be a factor.
Nevertheless I can't force someone to do something, and so far my reasons and intuitions can't be presented (by me) as a strong enough argument for this parent (scientist) to accept as evidence.
I think ultimately the only adequate solution would be to get out of this place and somehow maintain a degree of financial and therefore of social freedom. How this would be possible I have no idea. I wish I could live alone and have therefore a measure of control over my immediate surroundings. Perhaps to wish so is only making the "grass is greener" mistake, but I believe it would provide a degree of peace, and less stresses and problems forced into my attention.
Directing nearly all my energy toward securing really basic things (like peacefulness of surroundings) at the cost of purposeful things feels so wasteful and despairing.
Obviously we need basic things, which will provide us with health of mind and body and thereafter those which will make these things secure once we have them, for it is difficult to pursue (or even find a way to pursue) what one believes are worthy purposes without them. Since our society is complicated, and even in the best of cases maintenance of health would require a constant attention, it isn't possible to devote attention to simply the "Ends" and disregard the "means" for any length of time. However, when your whole attention is forced to simple, "animal", needs, or to actions that are not meaningful within themselves then I think one will lose purpose... soon you will have no attention to devote to the original point of it. That is why I think this situation makes me feel my dreams are dying through neglect.
They say if you devote too much attention to the means you forget the end. It seems to me my life is sort of a means to a means to a means to means to the end. I fear pretty soon all of this effort will cause me to forget the end.
When it becomes a great burden to live, how can one still dream? Who can preside unmoved over the death of their dreams? To save one's dreams must be worth great risks --I wish I knew what risk to take, or what to risk.
Thanks much for all the great suggestions!
-------------------- "...reading the Meditations for long periods can be conducive of melancholy." --qtd. in intro to Meditations Posts: 122 | From San Diego, CA, California, United States | Registered: Mar 2005
| IP: Logged |
bettyg
Unregistered
posted
Glad you came back and posted again.
My 16 year old niece moved out of her Dad's house 2 years ago; now 18 and graduating hopefully next month. Her Mom/my late sister died from breast cancer in the liver.
Her Dad was a workaholic before her death & continued to be. She was 11 and son was 14 when she died 7 yrs. ago this Aug.
She hated being home alone so moved in with a HS friend. They recently weren't getting along, and so she moved in with her brother who bought their late uncle/aunt's home on acreage.
So anything is possible; check with friends, etc. who can't afford much either, and pool your resources together. You don't need this ON TOP of your lyme disease/treatments.
A scientist; go figure; you can't tell or show them anything.
You're in my thoughts/prayers; best wishes to you. Open up to close friends too; we're here for you too, but speaking the words OUT LOUD mean a lot too.
IP: Logged |
Linda LD
Frequent Contributor (1K+ posts)
Member # 6663
posted
I would look for a church.
If you find one you like then someone there will pick you up and take you hime.
this will open new windows and doors for you!
On Wednesday nights and sundays "shop' around. If you can't drive call the church office and ask for someone to pick you up.
There is a window for you womewhere--we just gotta find it!
God bless, linda
Posts: 1171 | From Knoxville, TN US | Registered: Dec 2004
| IP: Logged |
hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
sunny,
i grew up in a house like yours. it can be done. you can wrap yourself in as much peace as the universe can muster...and then take it one day at a time.
i agree with the suggestions to get involved in a church. the other possibility is to find out if there is an ACOA group in your area. Adult Children of Alcoholics. my situation was not caused by alcohol, however i was accepted at ACOA because the feelings and the problems were the same.
it has been many, many years since i lived in that house you describe. it still haunts me sometimes, but mostly i think about how strong i must have been to survive. how lucky i am to be making my own decisions.
sunny, it will take lots of time and patience. lots of successes along the way, mixed with some bad days, too.
it can be done. you can heal.
best, hopeful123
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
| IP: Logged |
I hope you can find a way to get out of that house. You need to be in a better place so you can heal both mentally and physically. You are right, the stress is affecting you physically.
Maybe I am just cynical from 40 years of life experiences, but I have learned that toxic people don't change, or admit they have a problem, even when it affects those closest to them. I do not speak to my toxic parents because it is the only way I can be happy. I can't imagine having them in my life right now, being sick, it would be so awful.
Another option you may have is low-income housing, which is a government program, including SRO's (single room occupancy housing). Both base your rent on your income.
You live in a big city so hopefully there are social services that can help you. I also like other posters' ideas of looking to local support groups and religious groups.
Best wishes to you, P
Posts: 449 | From Vermont | Registered: Nov 2004
| IP: Logged |
Linda LD
Frequent Contributor (1K+ posts)
Member # 6663
posted
Any changes?
L
Posts: 1171 | From Knoxville, TN US | Registered: Dec 2004
| IP: Logged |
posted
We haven't heard from you- how are you? Remember, the most important person is yourself and to take care of yourself. Tom Weiling on the WB is superman: not you, not me. Translation: No red cape, can't save the world. Save yourself ( Not being sacastic). We need you to take care of yourself: please post soon. Thoughts and prayers and many good wishes with you.
Posts: 719 | From Delaware | Registered: Jan 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)
![[confused]](graemlins/confused.gif)
Printer-friendly view of this topic