posted
I am hoping some people will be willing to be candid and honest about my question. No judgement here. How have you handled being sick? We all know the toll that Lyme and other chronic illnesses take on our feeling of self worth, and the toll it takes on the relationships we have with those we love. I know that everyone here has varying degrees of support, from incredibly supportive spouses and loved ones, to being completely shunned by the ones closest.
We also all know how damned difficult it is to get out of bed each day. I like to think that it is nothing short of triumphant if I get myself up and dressed, even if it is for an hour of the day. I have kids, and am the stay at home mom, as I have told you all before. Parenting is hard. Stepparenting is even harder. Doing it while you are sick is the hardest thing I have ever had to do. And then to try and make my life meaningful, and to find joy in it, is almost impossible.
When I look at my journey with Lyme, and how far I have come in the last 2 years, I am so proud of myself. I know I am a good mom. I struggle though, with being angry. I have Lyme Rage and depression, as I think we ALL do. I think that is a given with any chronic illness, but especially an infection in your brain. My family is very complicated, from a stepson who hates me just because that is what stepkids do, to a birth mom who is very dysfunctional and not really around, but not really gone either, and a very energetic four year old. We have been struggling, to say the least. But haven't we all?
I really feel like I have held my head high, tried to embrace my illness as a gift, given to me, to allow me to realize my own strength. But I have a lot of bad days too. I yell, scream, cry, get mad, feel hopeless, snap at people that do not deserve it, and I hate this about myself. But this is me with a raging brain infection. It is not me. I was NEVER this way before I got sick. I rarely got mad, I never fought with people I know. I try to do my best everyday, but there are a lot of days when my best is nowhere near my true best.
And it seems like most of the people in my life think I should be handling things differently. They judge, and criticize, all behind my back. Never, ever, have they offered to help. Not one has offered to take my kids for an afternoon. But then they call me horrid names when I am unable to behave at this, in my mind, very unrealistic standard, all the while, leaving my illness out of the equation.
I am one who is always willing to look at myself and my actions, and take responsibility for them. I am more than willing to work to change. At the same time, I just don't know how it is that I am supposed to act, when I am so sick. How do you act? Are you able to live with your illness and treatment with grace and dignity, or do you loose control? And if you can hold yourself to the highest of standards, how do you do it? I know I shouldn't listen to the judgements of people who are clueless, but I don't know how to do anything about it, besides treat, treat, treat. I am not an angry person, but I do get mad when I am so sick, overworked, and underappreciated. Do you feel the same way? Do you struggle with it too?
I was told yesterday that I need to be happy. That I need to be out and doing things, and living my life. I would give anything for that, but when you are bedbound, and housebound, that isn't really an option. It is so hard to leave when I get random, debilitating panic attacks. Am I being unreasonable to feel this way? How do you find happiness when you feel like you want to die? Sorry this was so long, and please, be honest in your responses. I could really use some honesty.
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
Boy, I sure can relate.
I am foggy so can't go into a lot of detail.
But what it boiled down to, was me distancing myself from those who criticize, who were arrogant and condescending to me. I stopped the phone calls and emails.
But I only did this after numerous attempts to help them understand Lyme (and CFS before that) with articles, internet links, books, and the movie "Under Our Skin".
But when they refused to read and watch those things and continued to judge or said something like "Gee, I hope you do something about those rashes", I realized I didn't have friends or family, I had a bunch of bullies.
A good lesson for me.
I now have two good friends - one a former supervisor, and one I met on the internet who lives nearby. My significant other has done his best to understand, and he has stuck with me and supports me and he is a sweetheart.
You can't please people who simply want to judge rather than understand your illness. . Let them go and take care of youself.
That's as honest as I can get.
Posts: 1358 | From Midwest | Registered: Apr 2009
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
Dear Searching,
Your post touched me....
I'm one of those who didn't have much support.
I had to separate from my spouse during treatment and work part-time.
Also have one of those stepkids....
Let me answer your questions.....
How do you handle being sick?
I try not to beat myself up along with everyone else. And those that jump on that band wagon I avoid.
How do you act?
Like a crazy person at times. Especially before and during treatment.
Do you lose control?
Yep!
Standards?
Nope. Too sick!
Feel the same way? Struggle with it too?
Yes! Yes!
Unreasonable to feel this way?
Absolutely not!
Find happiness?
I tried to remember that I was battling for my life and was very, very ill. So, getting out of bed and making it to the couch....touchdown!!! Eating something......touchdown!!!
Also I'd try to distract myself to find happiness. Lost the ability to read for awhile but would watch movies that I enjoyed and would sit outside in the sun with my dog. Also any chance I could I'd talk with supportive friends.
P.S. I had panic attacks too. Could be Bart and also try not to beat yourself up about those. I'd try and fight mine but the way I learned to deal with those was to say 'so what, hey, I'm out of bed and able to walk and talk'. So I'd focus on the positive.
And BTW you really, really should be proud of yourself for hanging in there.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6145 | From Columbus, GA | Registered: Jul 2004
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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
I really hope the day comes when Chronic Lyme is understood by the medical community.
Then, there will be a better chance for the average person to understand what Lyme can do - the rages, depression, anxiety, cognitive dysfunction, even psychosis.
That would make it so much easier for family and friends to understand.
Like I said, I had to learn to let people go and focus on getting well.
I found that beating myself up was not helping. Besides others were beating me up enough already.
Some of those people have tried to reach out to me socially recently. They seem kinder, and I am in a little better mental state because of the antibiotics and herbs. I'm trying to forgive and forget.
But, the lesson learned for me was that people are not necessarily going to be there for you when you are down. People want to be uplifted. It is selfish, but that seems to be true for so many people.
Now, I am learning not to expect much from people, and to know who my true friends are.
Posts: 1358 | From Midwest | Registered: Apr 2009
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posted
[QUOTE]Originally posted by searching4truth: [QB] I am hoping some people will be willing to be candid and honest about my question. No judgement here. How have you handled being sick?
We all know the toll that Lyme and other chronic illnesses take on our feeling of self worth, and the toll it takes on the relationships we have with those we love.
I know that everyone here has varying degrees of support, from incredibly supportive spouses and loved ones, to being completely shunned by the ones closest.
We also all know how damned difficult it is to get out of bed each day. I like to think that it is nothing short of triumphant if I get myself up and dressed, even if it is for an hour of the day.
I have kids, and am the stay at home mom, as I have told you all before. Parenting is hard. Stepparenting is even harder.
Doing it while you are sick is the hardest thing I have ever had to do.
And then to try and make my life meaningful, and to find joy in it, is almost impossible.
When I look at my journey with Lyme, and how far I have come in the last 2 years, I am so proud of myself. I know I am a good mom.
I struggle though, with being angry. I have Lyme Rage and depression, as I think we ALL do. I think that is a given with any chronic illness, but especially an infection in your brain.
My family is very complicated, from a stepson who hates me just because that is what stepkids do,
to a birth mom who is very dysfunctional and not really around, but not really gone either, and a very energetic four year old. We have been struggling, to say the least. But haven't we all?
I really feel like I have held my head high, tried to embrace my illness as a gift, given to me, to allow me to realize my own strength.
But I have a lot of bad days too. I yell, scream, cry, get mad, feel hopeless, snap at people that do not deserve it, and I hate this about myself.
But this is me with a raging brain infection. It is not me. I was NEVER this way before I got sick. I rarely got mad, I never fought with people I know.
I try to do my best everyday, but there are a lot of days when my best is nowhere near my true best.
And it seems like most of the people in my life think I should be handling things differently. They judge, and criticize, all behind my back.
Never, ever, have they offered to help. Not one has offered to take my kids for an afternoon.
But then they call me horrid names when I am unable to behave at this, in my mind, very unrealistic standard, all the while, leaving my illness out of the equation.
I am one who is always willing to look at myself and my actions, and take responsibility for them. I am more than willing to work to change.
At the same time, I just don't know how it is that I am supposed to act, when I am so sick.
How do you act? Are you able to live with your illness and treatment with grace and dignity, or do you loose control? And if you can hold yourself to the highest of standards, how do you do it?
I know I shouldn't listen to the judgements of people who are clueless, but I don't know how to do anything about it, besides treat, treat, treat.
I am not an angry person, but I do get mad when I am so sick, overworked, and underappreciated. Do you feel the same way? Do you struggle with it too?
I was told yesterday that I need to be happy. That I need to be out and doing things, and living my life.
I would give anything for that, but when you are bedbound, and housebound, that isn't really an option.
It is so hard to leave when I get random, debilitating panic attacks. Am I being unreasonable to feel this way? How do you find happiness when you feel like you want to die?
Sorry this was so long, and please, be honest in your responses. I could really use some honesty.
.................................................
Breaking this up for easier reading for many here.
Your post touches me - I went 25 years undiagnosed, dealing with similar questions myself, but not dealing with all the family you're dealing with.
When I found out what I had, I started explaining it to people, because they didn't understand what Lyme is and what it can do to people. Same for co-infections, if you have any. I also have Lyme brochures that I literally give to people to look at and read.
I have learned to explain in soundbites - two words, ten words, twenty words, more - whatever it takes to explain what's happening, very quickly.
Then if they're interested, I talk further. If not, I don't bother. A lot of the time people calm down if they have an explanation from me.
Example: Me: I have Lyme disease. Do you know what that is?
If no, I say it's a bacterial infection - it gets into the brain early on and inflames the nerves and spinal cord. It can burrow into and inflame tissue anywhere. I am managing its symptoms and have to be flexible with my living arrangements. We can talk about it some more if you'd like.
If they say they sort of know something, I listen to what they know and see if it's accurate info. Then I follow up with statements about my need to manage it.
If they say yes, I usually like to engage them in a discussion, because then we can have a dialogue about the whole situation that everyone's having to manage, and that also leads them to have a greater understanding of my situation.
And even still, I have to communicate to others when I'm not able to do something that they're able to do.
Re their not wanting to help, they don't sound like very nice friends. Friends help each other. Many people aren't up to what's needed here.
How do we do it? Everything you're saying here sounds perfectly normal to me, dealing with the amount stress we're dealing with.
We're not the same as well people. We have to live differently, according to what we can handle, and that can vary day by day.
I think you are the best judge of what you can handle or not handle, and you have the right to set some boundaries with others, as in, "I'd love to be able to do that, but I don't feel well today," etc.
It sounds like you're a very responsible person. Being sick does mean letting go of normal expectations and learning to adopt some new ones, which include also taking care of your needs, which are now different due to being ill.
It's first of all an inside job - it's us who need to come to understand and accept that what we can do/offer/be in the world is different than everyone's expectations, which we also for the most part grew up also believing.
We literally have to operate with a new set of expectations - that we will do the best we can, but that we have to manage an illness or illnesses.
One aspect of that management is the variance in what we can do. That can be very confusing to others, as in "you seemed fine yesterday," etc. So I just tell people that - that I will do as I can, and let you know if I can't.
If people are not up to respecting such a dialogue, then dropping them from relational interactions is the most destressing thing to do, I think.
Re happiness, I try to do things that bring me some, however modified the activity. Just to have some stuff in our lives that we enjoy.
When this first started for me, and I was in bed, I surrounded myself with a lot of beautiful pictures and "went travelling" in them, so to speak. That's what I call very modified access.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
at first (my husband and i both have Lyme) we wanted to end the pain (suicide) but we have children and found God, and now i handle being sick by being grateful for everyday i have.
Posts: 16 | From Michigan | Registered: Oct 2008
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
Searching, your words have touched me. You deserve to be very proud.
I'm still kinda new at this, just been treating a year this May. But although better than I was, May kinda hit me like a ton of bricks. I had 3 really good weeks in April, with short 4 day herxes that gave me hope I was nearing an end. But when I herxed at the end of April, and it just kept going and going... I got very blue. My poor husband is changing jobs and all I can think of is myself. But then I get mad cause he wouldn't even read Cure Unknown to try and understand. He is very supportive, but sometimes, for the first time in 10 years I feel we are moving in different orbits.
Those 3 weeks I was able to work really well (felt smart and efficient) do chores, and still have energy to something else, go out with friends, a bit of gardening, or do tricks with the dogs. Little bits of joy! Not talking fireworks... But enough to make me feel human. Too much, I would pay for it the next day- but recovered the next day.
This month has made me very sad. I am doing all I can to do my job (and not cry there). I have a lot of pain, and don't know if I am depressed cause of the pain or in pain because I'm depressed. There are no extra activities. And I feel both me and my husband are especially deflated after 3 great weeks to be here again.
My mother, sisters and brothers, say "aren't you rid of that yet?". "maybe you can just choose to be happy". And the coded message "should you be taking all those antibiotics". Or. " do you really have Lyme?". This is of course only when I call them.
And then I begin to 2nd guess my treatment. Maybe I am just overweight and perimenapausal. So why am I on all these meds and spending a fortune on llmd's
And then I get a good spell. And I realize I am following a pattern and I am so much better than a year ago. When I was losing words, got lost a few times, and was so totally exhausted I started looking into disability.
And I feel guilty a lot too. There are a lot of people at work who have gone through things a lot worse than me. cancer. Heart issues. Etc. and they are troopers. And I just don't have it in me to do the 25% extra I used to do.
And I feel whiney. So many of you, like you Searching, Have so much more to deal with. I know I am one of the lucky ones with this hateful disease. But still I feel self absorbed.
And I feel stupid. I don't know how you all know all the things you know. I have the hardest time keeping everything we need to know straight, to try and take control of my treatment. So, so many options.
So no, I don't think I am handling it well. But I am doing the best I can.
Hugs to you Searching4truth.
Posts: 1728 | From USA | Registered: May 2011
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posted
I really think we live in a very different universe than those who are well, and that we have to give ourself a lot of internal support, as in doing the best we can, taking a rest, being the judge of how much we can or cannot do, that it's an inside job first.
After that, managing everyone else. Some will get it and some won't.
Once in a while I try asking someone who doesn't get it if they've ever had an experience of something wrong with them that others couldn't see,
or that they couldn't figure out for awhile, or that wouldn't heal like they wanted to heal,
or maybe I try the angle of when they go into a hospital, they can't see what's wrong with others there -
I probe to see whether they're capable of any humility regarding health. Because that's the position we've been forced into. If they can't, I let them go. They'll face their own suffering some day.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Wow, you all are amazing! I knew I could count on you to give me both support, and something to chew on. Some new perspective. So thank you all for that!
I think it takes so much more strength to admit that you are weak, than it does to pretend you are something other than you truly are.
Kudzuslipper, I want to tell you that there are NO "lucky ones with this hateful disease". I am not able to work, and I admire you for trying to, even if it is less than you do while healthy. It takes a ton of courage to navigate the healthy world day in and day out, when all you want to do is crawl into a cave and not come out for months. You can be proud of yourself for that.
I often think that, despite how much work it is to care for children, I am so thankful for them, because killing myself is not an option. Neither is slipping away into a deep depression. My kids, and my daughter especially, are the only reason I get up each day and try to get better.
I want to respond to each of you more, but I just set up my piccline, and I really try to use this time to just lie very quiet and still, and be mindful of the powerful medications running through my veins. So it will have to wait until tomorrow. I just wanted to thank you. You all have helped me in ways I cannot express.
Posts: 427 | From Pacific Northwest | Registered: Oct 2010
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
The only advise I can give is decide what in life is important and try your best to do those things.
Some times it feels like I'm just taking the steps in body but not in spirit. Then I'm able to dig down in my being and pull out my spirit for the needed time.
Now....these are not good for me the next day or the next several days. For years, what I found important has effected my health, but I must participate in life as much as I can.
Oh yeah, I stay on the other side of the room or area from those people that I know effect me the most. The stressors(listen to your body, they will tell you who these humans are)will zap you.
I've learned not to share any of my health issues unless I'm asked. Then I only give short replies and move on. Waste of time and energy to tell the truth about how I feel.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
Reading these posts make me feel more normal. I have all the emotions, challenges, and sadness mention here.
I have been sick fo 3 1/2 years and just finally worked through the stages and now am at the acceptance stage. That makes me even sadder.
I use to have such great spirit and fight. In the past 6 months I have lost some of that.
The ironic things is I am better for the most part.
I just want it all over so I can be normal and want to shop again, go to baseball games, have my stomach behave so I can eat out again, and I want to wake up knowing I will have a good day and not get sick half way through the day.
I always have hope though, that they are going to find the right combo for treating us and we will all be well in the future.
Posts: 620 | From Ks | Registered: Oct 2011
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posted
Reading these posts make me feel more normal. I have all the emotions, challenges, and sadness mention here.
I have been sick fo 3 1/2 years and just finally worked through the stages and now am at the acceptance stage. That makes me even sadder.
I use to have such great spirit and fight. In the past 6 months I have lost some of that.
The ironic things is I am better for the most part.
I just want it all over so I can be normal and want to shop again, go to baseball games, have my stomach behave so I can eat out again, and I want to wake up knowing I will have a good day and not get sick half way through the day.
I always have hope though, that they are going to find the right combo for treating us and we will all be well in the future.
Posts: 620 | From Ks | Registered: Oct 2011
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Searching, you said something about it taking more strength to admit weakness.
From a healthy person's point of view, it would be crazy to say you couldn't do something.
That was me, for as long as I could hold out. Then, the unknown pain caused me to physically collapse. I was forced to surrender, many many times, and I didn't even know why.
That's why we have to give normal people some room, because that's all they've known, until they're forced out of competence. We truly have gone on a different journey.
May I say, on the brighter side, that I also beat back some of the unknown difficulties. For instance, I actually fixed my frozen pelvis doing stretches in the swimming pool over 9 months time, after I had flunked physical therapy. And that happened two years before I found out about Lyme.
I think a lot of the time, when I beat back something, it was due to thinking outside the box. Like I had gone to PT every year to get better, as well as doing bodywork.
So for me to finally see all that wasn't going to work was when I started thinking about the problem.
Realizing I could hardly move anymore, I reasoned that I could put myself in the swimming pool and gradually get myself to stretch. I took pain med for the first month to make it possible to start.
I want to encourage personal thinking, personal ideating to come up with ideas that might work for us. That one did for me. I just do maintenance stretching and swimming now.
So, how about all our strengths and accomplishments too? Anyone getting through this has those too. I am proud of my survival accomplishments!
Posts: 13116 | From San Francisco | Registered: May 2006
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