posted
Hi Gang, How many of us live alone? How do you manage your care? I am having an incredibly difficult time managing all my affairs on my own. I reached out for help from my family and have not heard a peep from any of them. I am beyond hurt. I knew they were in denial about how devastating this illness is. I know I put up a good front. I allowed myself to be humiliated by begging for help from my family you would think one of them would respond. I am mostly house bound. I work from home, thank God, but that is about all I can do. Everything has suffered as a result of this illness. My Dr. wants me back on IV and he thinks the ins. co. will deny it. I don't know what to do. Any feedback is greatly appreciated. Blessings, Just Jan
-------------------- I used to be marblenose but my lymebrain could not remember what email account I used to sign in so now I am just jan... bit in 1994 diagnosed in 2004 I have tried every anbx and alternative known to personkind.
NICENESS COUNTS!! Posts: 61 | From orange county new york | Registered: Jul 2008
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BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
wow- i just wrote almost the same post
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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posted
I also humbled myself to ask my family for help, and heard nothing back from them for more than a week.
This was after they had already previously offered help, or I would not even have asked.
Then I had to bring it up again to get them to discuss it with me.
Then they said they understood, and agreed to help, but they still didn't do anything.
I had to bring it up with them again, feeling horrible by now thinking they didn't want to help me or didn't believe I really needed it.
Then they asked me to give them more information, which I thought I had already thoroughly covered, but I gave it to them again.
I also asked them to watch the video of Under Our Skin with me and to read Cure Unknown, which they did.
Then after about a month, they finally started helping me.
I have a wonderful family who have always been supportive of me my entire life, and have never hesitated to help me when I needed it, if they were able to.
In their case, they just really did not grasp how serious it was. They still don't, but now they understand a lot better.
I went through so much anxiety and solitary tears during the weeks when I thought they didn't believe me about Lyme or thought I was asking for too much.
I recently wrote to a good friend who I had previously told about my Lyme diagnosis a few months ago. I told her the whole story and the health and money problems I am having, and my worries about the future.
She wrote back and said she guessed she remembered me mentioning it, but she had no idea things were so bad for me or that it could even be that serious.
I know there are some family and friends who are mean or selfish and just refuse to help, but sometimes they mean well and they just need a lot more information and understanding.
It is possible they will come around if you keep talking to them. Try to resist the temptation to hold the rejection against them, even though that is really, really hard.
Regarding humiliation, I am still trying to find the peace I hope to have once I accept that this disease is going to take away from me whatever it wants, which could be a little or everything, and I have no control over that.
But I think it would be a lot easier to cope with the further humiliation of having to keep asking for help if I recognized that much of my dignity is as good as gone already, and it is not up to me whether I get to keep it.
There is a deeper kind of human dignity that we can keep even in humiliating circumstances. Refusing to lose your cool and rage against or write off your family can be part of that.
Good luck to you both! You're not alone.
Well, okay, you are--that's why you posted, haha, but you're not the only ones in the same situation.
-------------------- 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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posted
Hi Light at the end, Yup, You wrote what I have experienced. They have read the books and have seen the movie. I send them updates on what is going on legally and medically. I remember when my father first was diagnosed with cancer people would cross the street rather than speak to him. That is how I am feeling. Regardless of the information I give them they refuse to accept how ill I really am. There is no dignity with this illness. I never know from day to day what will happen to me. I just prayed I could get a respite from my family for a little while. Blessings, Just Jan
-------------------- I used to be marblenose but my lymebrain could not remember what email account I used to sign in so now I am just jan... bit in 1994 diagnosed in 2004 I have tried every anbx and alternative known to personkind.
NICENESS COUNTS!! Posts: 61 | From orange county new york | Registered: Jul 2008
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posted
Could you ask for specific things that you know they can do and on a schedule that will fit with their own? Maybe it is too nebulous at this point.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
I think you hit the nail on the head when you said no one knows how BAD it is. And they won't unless they've been there. It's heartbreaking that you say people crossed the street to avoid your Dad when he had cancer. God, awful. I've experienced the avoidance thing people do--mostly by email or they won't respond to calls etc--it hurts. This is when you REALLY find who your friends are and who you can count on.
I often worry about those of you who are alone. (I'm lucky for now). I've often said, "I don't know how they do it." So you all deserve A LOT of credit (not that that really helps).
I think lou has the right idea about specificity. Pinning people down with a time, a task, and a place is best even when you're not sick and in need. And spread it around. I've had to try not to over depend on the same few people.
Is there a support group in orange county, where you live? Maybe they have some local ideas like car services etc. or maybe someone in the group is less sick and could help you a little?
Maybe visiting some of these family members they could SEE your symptoms and limitations in action.
Anyway lots of hugs! Try not to skip ahead into the future and get overwhelmed with the what-ifs.
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
we've been dealing with lyme about the same amount of time and in the same place. (except 5 yrs ago i coudn;t wrk anymore so i have mov to nh where i came from a long time ago)
i got bit in dutchess cty ny and was first sick in early 80s but not dx til 97 or 98
i remember ppl saying "are you too sick to work?" and i remember thinking..well if i drive an hour to work each way and work 8 hrs and then every other minute i am in bed guess i can still work...this from a mom of 4. i don't know how i did it.
then after 5 injuries at work in the last 16 months the last one made it impossible for me to work.
since then my whole life revolves around taking care of myself. i tried to do some vounteer stuff - but had to cancle too much. so it is just me taking care me. the house is a mess. i am overwheled by bills and paperwork and meds and supps
i tried to get someone from the brain injury ppl to help me set up a filing system for papers cuz the stress of paying bills and doing taxes is really bad for me. but the person was gonna cost 85. and hour so forget that.
i think my kids - for years didn't realize how bad it was. they say lyme isn't real---but i think they realize the last head injury at work did something to me. they mosly think i am throwing $ away on supplements and bad docs(llmds)
i try really hard to not ask for help. a few imes did---once after bilateral knee replacement for a few days and recently help reading contracts etc while trying to buy a handicap accessible house---i was living the only pace i could afford for years but it is in steep mts and has cold winters and was very bad for me---also poor medical. this house is better but requires driving farther for stuff...hope i can figure that out.
i know this isn't really helpful. just want you to know you are not alone.
my motivation is to take care of myself as long as i can and leave them alone... cuz i know what the end is going to be lie.
the thing is 3 of them have been dx and are in remission...and think they are cured. if i can figure out what works for me then maybe when they get sick again they will know how to get well
posted
I am really sorry for your case. I have active lyme disase for 16 years and I have suffered a lot because of this disease. And it still goes on too. I have suffered from countless depression attacks, I have had panic attack, I have lived dense anxiety. I have had lots of despair emotions. I sometimes have too. I have been taking combined ab treatment at high dose for 7,5 months. Although there is some improvement, I sometimes feel as if I have never started ab and I sometimes have some despair emotions as if I have never made any progress. Bad and black thoughts sometimes cover my mind and I think that I will never be recovered from this disease. But I sometimes think that I have made some progress and I make myself relief too. I do not think that I will manage an important improvment before 2 years pass. There is a turkish proverb: ` The one who falls from donkey understands the situation of the other who falls from donkey too.' Believe me, only one who lives the things you live can understand you. Sometimes it is not possible to tell something our friends or families about this case.
I understand your case very well. Despair and hopelessness are really difficult emotions to be overcomed in this burden of the disease. But how could not you make any progress although which antibiotics you take and at which dose you take them? Did you use combined ab? Have you gotten abs at enough high dose? Do you have addition infections? Have you ever tried pulse treatment? Plese do not lose your hope. Ahmet
Posts: 182 | From turkey | Registered: Jan 2008
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posted
"Maybe visiting some of these family members they could SEE your symptoms and limitations in action."
I live alone, and when I feel bad, I go home. Nobody ever sees me when I am having my worst symptoms, usually because I am home alone in bed asleep.
But when I wake up and feel better, then I get cleaned up and go out and do normal things again. So the evidence they have of my illness is mainly my absences. They really don't know.
Also, I agree with Ahmet. We all have to hang onto hope and optimism. As long as we do, we can make it through everything else, and keep trying things to get better, and eventually something will work.
Giving up is the only thing that is guaranteed NOT to help.
"i remember ppl saying "are you too sick to work?" and i remember thinking..well if i drive an hour to work each way and work 8 hrs and then every other minute i am in bed guess i can still work."
I am near that point sometimes. I get so dismayed that I have to give up everything else except working. But I cherish my independence enough to decide to hang on to my independence if I can.
It makes it easier if you make the choice about what your priorities are, whether that's keeping your independence as long as you can at the expense of everything else, or letting someone help you so you can stay home and concentrate on your recovery.
If you choose or at least accept it as your responsibility at this point in your life, you will feel better than if you think it is being forced on you, and feeling powerless to change it.
Jan, it's great that you can work at home. I don't know whether that would be a possibility for me or not, if I needed the option. There are days already when it would be really nice if I could.
-------------------- 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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posted
Thanks for the feedback, I wrote a long letter to my family asking for
specifics. It included financial help, physical help, emotional help. It was very detailed. I
wrote it so that everyone I sent it to could offer up at least something to help me out.
NOTHING!!!!! I have heard nothing from anyone. My friend who drives me to the LLMD every month
says I am officially an orphan! It is so sad to think these people have no idea what I am going
through and what's worse, don't seem to care.
I will survive!! We all will!
Blessings, Just Jan
-------------------- I used to be marblenose but my lymebrain could not remember what email account I used to sign in so now I am just jan... bit in 1994 diagnosed in 2004 I have tried every anbx and alternative known to personkind.
NICENESS COUNTS!! Posts: 61 | From orange county new york | Registered: Jul 2008
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posted
"I wrote a long letter to my family asking for specifics. It included financial help, physical help, emotional help. It was very detailed. I wrote it so that everyone I sent it to could offer up at least something to help me out."
i'm sure you were more specific, like "help me get a bath next tuesday, $100 for tax bill." maybe asking a particular person.
i live alone after my husband checked out after 11 years. i can't even get on the toilet myself. so i really feel the vulnerability and humiliation you all are feeling.
some people [many people] can not be a caregiver. they may be well meaning, but are just incapable. my husband was in this category. if you can NOT take it personally, that is the best thing.
please post how you are doing. aliyah
Posts: 830 | From Colorado | Registered: Mar 2005
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ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
quote:Originally posted by ahmet ozbek: ...There is a turkish proverb: ` The one who falls from donkey understands the situation of the other who falls from donkey too.' ...
ahmet, you are so right, as is this wonderfully visual proverb!!! Thank you for this! What wisdom!
As I've learned and have written a number of times on these kinds of posts - "Everyone will get their turn". "Nobody gets out of life alive" and 95% of the population suffers a life of decline and pain; only 5% have a sudden death.
Pain and illness isn't something that should be wished on anyone, but all of us here now know that "experience is the best teacher". So when you struggle with others' lack of understanding, just remember, their time will come; and don't be wishful about it, just be sure about it, then, let it go...And walk away, if you're able.
BTW - I live alone and thank God for it! Esp. after diagnosis, when people clearly didn't want to get involved and refused to accept TBD as the cause, I walked away from them first. Saved time and energy, which I couldn't afford to waste. Even during treatment and now, in remission, there are still limitations and after a few attempts to make others understand, when it's obvious that they don't and won't, I walk.
It was tough to lose so-called friends, but it made things much easier for me. There's not the constant struggle and negativity that expends your energy and prevents you from getting well. Yes, I've had some friends that I thought wouldn't turn on me who surely did run when the going got tough, but...."Everyone will get their turn." One way, or another, "Nobody gets out of life alive."
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
I LOVE THE TURKISH PROVERB!:
The one who falls from donkey understands the situation of the other who falls from donkey too.
HERE WE SAY;
"YOU DON'T GET IT UNTIL YOU HAVE IT" (LYME)
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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