posted
I try to get out on the weekends for the sake of my sanity...
But it completely wears me out, so afterwards I'm back in bed until the next weekend rolls around.
Nothing exciting really happens in my life, since I'm stuck resting most of the time, so I try to post positive statuses on facebook about my weekend..
But then it's really frustrating, because people say things like ``I'm glad you're feeling so good!''
They have no idea how hard it was for me to leave in the first place, and then how much I will end up suffering from it.
I can never do anything enjoyable without being punished by my body later.
Leaving the house once a week, and then getting sicker from it is far from feeling good.
I can't even remember what "feeling good" feels like!
I either feel absolutely terrible, or just not AS terrible as I usually feel.
I'm not asking people to say ``I'm sorry you're feeling terrible.'' ...
It just really frustrates me when they say ``I'm glad you're feeling good'' when instead I feel terrible!
It's like me telling someone who is vomiting blood, but goes to the store to buy medicine:
``I'm glad you got out of the house! You must feel great!''
I have to get out once in a while for my mental health, and for my husband's.
I know this disease can be draining for him too.
I don't even know what to say to people anymore...
If I tell them how terrible I really feel all the time, I come across negative.
If I try to be positive about the one day of the week I actually leave the house, then I seem perfectly fine, and have people talking about how good I must feel..
It's so frustrating!
Just thought this would be a post everyone here can relate to...
Feel free to share your own frustrations Posts: 442 | From usa | Registered: Oct 2010
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posted
How true is that? I try not to complain because I know that nobody wants to hear how bad I feel all the time, but if I push myself to "act normal" ( well as close to it as possible) then everybody thinks I'm cured! We just can't win, can we?
-------------------- 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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after i posted this, someone left this comment on my wall:
"hey katie! i'm so glad you've been feeling better lately!"
i have NO idea why anyone would think that? i have been more miserable than ever!
i tried to use some things i wrote in this post to explain myself it never seems to get through to people though!
Posts: 442 | From usa | Registered: Oct 2010
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James1979
Unregistered
posted
I think we have to remember that usually they are meaning well, and they are trying to be helpful.
The problem is - they have no idea that instead of being helpful, they are being harmful! I think a lot of it is due to ignorance of our disease.
For example, if we told them that we had cancer or AIDS, would they take our illnesses so lightly?
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i always ask myself if their intentions were good, and if so then i don't hold it against them.
it doesn't make it less frustrating though.
and that is very true, they are completely ignorant. i feel like yo have to die from this disease to be to be taken seriously..
Posts: 442 | From usa | Registered: Oct 2010
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posted
I went through this a lot too, when I was more bedridden - people not getting it when I was up, that I wasn't in good shape.
Finally, one day, I just wrote down everything that I wanted from people. Everything that I wanted them to understand and how I wanted them to respond to me.
Then I asked a friend I trusted if I could read my list to them. They were very moved and started crying, and then they were a lot nicer to me after that.
I began to practice asking others for what I wanted, even if it was just one step on my list.
I suggest this as an experiment. First I had to be clear about what I wanted from others before I could do it.
Posts: 13116 | From San Francisco | Registered: May 2006
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Do you still have that list somewhere Robin??
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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payne
Frequent Contributor (1K+ posts)
Member # 26248
posted
words i hate...
HOW ARE YOU DOING ? HOW ARE YOU FEELING ? HOW WAS YOUR DAY? HOW LONG BEFORE YOU ARE CURED ?
tick tick tick tick... I got throu to one of my friends, I told him when I feel better, I sing it out. have patience's with me, thats all i ask be patient... and Ask God, to Help Us !
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
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HOW ARE YOU DOING ? HOW ARE YOU FEELING ? HOW WAS YOUR DAY? HOW LONG BEFORE YOU ARE CURED ?
OMG. This is my typical conversation wife my sister and mother. Glad I am not alone! Hang in there.
Posts: 199 | From Let's Go Pens! | Registered: Apr 2010
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scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
I think most people are not exposed to long term illness so they can't even imagine what it would be like. It doesn't help when most Lyme patients "LOOK" fine even though they are extremely sick! When one has cancer it's fairly obvious... but with Lyme if I get dressed up and do my hair no one can tell the amount of pain and suffering I live with daily! So it's hard for people to A. don't think we're faking it and B. give us the compassion.
I have some wonderful friends and even they at times "forget" that I'm sick just because I look so good!
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Katie, I totally understand what you mean about Facebook. I agree completely.
I'm confused though by some of the others' comments. I guess we're all different. I'm offended or feel ignored if people DON'T ask how I'm feeling, or how I'm doing. I'm used to my family ignoring the fact that I'm sick, so to be asked how I'm feeling would mean the WORLD to me!
And as far as how I look, the other day I made it out to a church function, which I ended up paying for big time, but that's another issue. A woman I hadn't met before but who had known about me from the prayer requests approached me and said, "I would never know you were sick from the outside, you look perfectly normal. I can't believe how good you look for having so many medical issues! Wow!"
I said, "Thankfully it's all on the inside. It would really suck to feel so awful and be so incapacitated and look like crap all the time, too. At least I can be thankful that I look normal!"
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
[QUOTE]Originally posted by kam: [QB] Do you still have that list somewhere Robin??
You know, my list was kind of similar to the spoons theory person - Christine, I think, is the one who came up with that -
someone could not understand her limited amount of energy, so she grabbed up several spoons in the cafeteria and said:
"this one's for getting out of bed, this one's for getting here, this one's for getting home, and now I only have a couple spoons left" -
that analogy helped someone understand that Christine was there, but with limited energy.
So that was the first one on my list - we can only do what we can do, we have limited energy, and to be understood and appreciated for showing up at all!
Maybe others can add other ones here - what we'd like people to know, so we can all function socially to the best of our abilities - ..................................................
And I think Scorpiogirl and Tracy said it, about people not realizing we're not well because we look ok.
For that one, I usually say I have Lyme disease, it's a bacterial infection, it goes throughout our body wrecking havoc, and you may not see the damage it does, but, but, but, it's here now
and then I go quickly into my spiel about infection reports in the area and what they need to need to protect themselves and pets.
I think when people say something that does not match what we're going through at all, it's a communication opportunity, whether we want to discuss our own situation, or warn them so they don't have to get it too.
That's if I'm up for doing all that at the time. .................................................
Payne and fatherguido - I will actually answer those question, if I'm up for it. Depends on how closely I know the person and what I know of their ability to hear the truth.
If solid in that regard, I tell them the truth. If not a close acquaintance, or someone who can't hear, I say something that we can talk about, that includes them too in the conversation. Maybe I did hear about something interesting that day...
Re when will you be cured, I give them info - that often we can catch it in the early weeks, but after that, it may be a matter of maintenance, because
and then I find out if they can hear about the relapsing nature of it or not, If they can, fine. If not, I drop it.
Posts: 13116 | From San Francisco | Registered: May 2006
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Katie,
have you tested your home for mold ? What have you done for parasite treatment? I am doing better, so my treatment worked. Pm me if you need more details.
Posts: 1834 | From US | Registered: Oct 2008
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
My siblings and I are dealing with the issue if 24/7 care for our elderly father so that he can stay where he wants to be - at home, rather than a nursing home.
After 8 years of severe debilitation by Lyme disease, some of them still wonder if I can do some overnight care for Daddy (when I'm sickest).
I have to keep reminding them that my condition prevents me from helping Dad as much as everyone else is.
My family rarely helped me at all for the many years I was bedridden with 3 young boys, one with severe special needs
It just seems like the ups and downs of the disease, and the "looking good" part of the disease, keeps it from being taken very seriously. It doesn't evoke the sympathy/fear reaction like cancer does. I guess I can't fault people when the official word from the powers-that-be is that Lyme is no big deal.
Still, it hurts to this day to know my family wasn't there for me during the worst times of my life. They didn't offer to help in any way when my children's lives were endangered because I couldn't tend to them At ALL. My husband looked like death at the time he was so overwhelmed.
We put the children into daycare and preschool programs to keep them safe, but they ended up alone with me a lot, anyway, because of my husband's work hours.
I don't know how many times I collapsed in public while trying to pick up my boys from their programs.Petiole would help us get into the van and send us on our way. Gosh, we were all so vulnerable.
Many times after a collapse I would drive and drive for hours trying to kill time before my husband could come home and help wheelchair me into the house. It was the only way to keep my kids safe while I was alone with them.
My whole point is that my husband and I went through some truly desperate times while those around us - strangers, acquaintances, neighbors, friends, relatives - you name it - seemed oblivious to our incredible need for help.
Despite all evidence of our terrible situation, because it was Lyme disease causing our troubles, and not something like cancer, we were not taken seriously.
The only reason things are some better today is because my special-needs child now lives in a home and my other 2 kids take care of themselves more now. I'm still really sick but "look so good"!
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
Maybe I need to write this to get some of my feelings out also.
I've had chronic Lyme for over 20 years. My family has given my very little support and help throughout the years. My daughter was born with it and has suffered ever since also.
A lyme friend told me her LLMD said lyme disease is a disease of abandonment and isolation.
I'm sure many of you can read the above statement and relate to those words, sadly.
Even though trying to make new friends that will try to understand, something is wrong when family doesn't try. These are people I love and I thought love me.
If they love me, aren't they supposed to respect me enough to believe me? Apparently not, and this is the part that hurts. How do you have a relationship with someone who doesn't even respect you? When I needed them the most, time and time again they turned their backs on me.
Denial runs deep in my family. it's easier for them to see their lives as fine rather than have to change what isn't fine. So, i can see the struggles they have with their own lives despite the front they would like to portrait. Perhaps this is part of the reason life all around is 'fine"
Needless to say, their denial has caused me alot of pain. I try to understand where it's coming from. Maybe knowing they are in denial all around helps a bit? I don't know. Yes and no. They are stuck. They continue to choose to not feel. In the process they have hurt me and my family.
I guess , for me, limiting my exposure to them is just easier since i usually just get disappointed. Deep down I do still hope to get a better response from them, and it still hurts, but I'll try to rely on the healthier people in my life more.
Sorry if i hijacked your post. It did feel good to vent.
Posts: 140 | From Phoenix AZ | Registered: Jan 2011
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posted
You haven't hijacked the post - it's all the same discussion.
I think we will not win with some people - they're closed to thinking, knowing, feeling with us.
But others, we have a chance to educate, so I always say try with them - try explaining it - see if they're willing to listen.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
OMG! I get this all the time. Unfortunately for me, I laugh when I'm nervous, and people make me nervous, so they think I'm always happy and fine all the time. And then question when I can't drag myself in to work the next day. ugh.
-------------------- 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
What helped me was confiding in one good friend. When I do make it to some function, it's only with people she has already instructed to not make such comments, that I will be making a big effort to be there and they should just enjoy my company and talk about normal things. Maybe it's not the healthiest thing to do, but I otherwise avoid events requiring meeting new people.
-------------------- ------------ It took 20 years to find out I'm not crazy. New bite in 2010 pushed my body over the edge. Positive for lyme, babs, bart, and myco. I am not a doctor and happily offer only my own opinions. Posts: 357 | From The Beach | Registered: Feb 2011
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posted
I am totally with you guys. I've stopped posting fun stuff on facebook bc then everyone thinks I am normal and doing well when the opposite is true!
I feel like I have to live a double life. At home with my husband, he knows how much I suffer, how much pain I am in every day.
In public, I put on my happy face and tell everyone I am "fine" or OK- lies, lies and more lies!
People don't understand and won't be able to unless they go through it.
I don't think we all know how incredibly strong we are just to wake up and fight this illness everyday. Each one of you is a warrior.
Posts: 233 | From Hudson Valley | Registered: Jun 2010
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posted
mbdq - thank you for saying this - "I don't think we all know how incredibly strong we are just to wake up and fight this illness everyday. Each one of you is a warrior."
This is the kind of self talk that I know saves every one of us. Yes, we are very strong people, and warriors.
I can have a party, laugh, look pretty, all the while feeling severe pain (except if I'm really that bad, of course) only to have to recouperate for 2 days. Is it worth it? You bet!
When I am having a period where I am not as bad as other times I live life to the fullest.I probably come off as being extra happy and extra excited. People around me think I'm all better.What they don't realize is, I'm just so happy to have a tiny break from misery.
I will continue to do this because it feels oh so good. i look forward to these times. If they don't understand that, so be it. Does it hurt? yea. But it would hurt me more to stop having that good time.
So I say there are some empathetic people and some not. To me it doesn't matter if they haven't gone through something, they can still take the time to have empathy and compassion and if they don't this is a cold flaw that they have.
These are the people that suck the life out of you and we certainly don't need that.
I know we are all far away from each other but i do value the strength, empathy and compassion I receive from all of you, and I thank you for that.
As far as the lies and more lies - I am allowing less people into my life that i have to lie to. I just need to protect myself more.
Posts: 140 | From Phoenix AZ | Registered: Jan 2011
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We just made two new friends who have committed to come and visit us every week.
They are there to support and help us through this. It is part of the charity that they have started.
I was abandoned for 2 years. We had no one that understood, except for this forum.
We could not have done it without this forum.
Now we have been sent two absolute angels who just listen to us all night long. They also tell us many stories about their own pain and struggles. They have both sufferred through extreme physical pain and can really relate to us.
One of the guys even just got a tattoo last weekend with their charity motto on it.
I wonder if he wanted to go through the sufferring with me.
They have all sat and watched me writhe all night in pain.
I don't have to hide. It is the most wonderful gift I have ever gotten.
My husband is also recovered from Bartonella so all the rage and strange and nearly violent behavior has left! I am so happy.
The passion in our marriage has returned.
There is hope everyone.
Make sure that your LLMD treats you for the co-infections.
Bartonella is sneaky and the lab tests are not always positive.
I gave Bartonella to my husband, and if I hadn't been married to him for over 20 years, we would have been divorced by now.
I knew that something had taken over his mind.
Now he is as gentle as a lamb. Back to his normal self, except for Lyme disease, and now he is starting to have the same all over pain that I have.
Now, I went a little off topic. sorry
-------------------- I am not a doctor. I have no clue. Posts: 606 | From somewhere out there | Registered: Sep 2009
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
One quick way to fix "looking so good" is to wear a summer shirt that reveals your accessed chest port. Pretty much ANY summer shirt will do!
If you have a PICC line, go for the the uncovered look. No matter how much of a hottie you are, your illness will be LOUD and CLEAR.
And if you happen to be going to a school meeting with a bunch of people who don't understand why your kid has been late or hasn't gotten his haircut, my favorite trick is to get a little blood return going in the ole PICC line before you leave the house to go to the meeting. Arrive for meeting with uncovered PICC line fully displayed, full of visible blood.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
tracy you are so mean......lol
i've gotten to where i don't wear any make up, baggy shorts, flipflops, etc. he's almost embarrassed to be seen with me.
but i'm going "wth...you want jlo? i don't feel good, get a grip..."
this illness has turned me into a major *****....
you get in my face and you're going to get bitten!!
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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payne
Frequent Contributor (1K+ posts)
Member # 26248
posted
you are all beautifull... may you find the will power to care for yourself and your families... friends I ain't got much words for them, need'n to boast when we are toast. really beautifull... i mean it. Myself I use to clean up pretty good for a plow boy, but, anymore i am just plain hard to look at... couch slippers, my favorite sweatshorts, and a shirt that don't show the sweat. I would take a whole house full off ya, compared to my old friends and their fake smiles. love ya
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
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posted
Tracy, that made me laugh - first time I ever experienced some PICC line action envy...
Posts: 13116 | From San Francisco | Registered: May 2006
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penguingirl
Frequent Contributor (1K+ posts)
Member # 28688
posted
What I hate about the PICC line is strangers on the street staring at it like I a freak- even though it's covered still can see some tubing etc under it. As if I have to feel less normal already. I wish it were winter time and I could conceal it! I was thinking of putting an Ace bandage over my PICC line cover so that it looks like I have some sports injury, haha.
But for people that know me and know that I am sick, yes I agree- the PICC line is a great way of showing them that this is no joke.
-------------------- Posts: 1204 | From USA | Registered: Oct 2010
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
hey payne, some of those old "plow boys" and cowboys clean up pretty dang good.
i mean look at george strait...OMG...
talk about hot....there's nothing better looking than a cowboy with boots, jeans and cowboy shirt.
whew.....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
I get frustrated with these issues as well. I see people in town that I used to work with, or from church or whatever. They look at me and say, "You look so good, are you well now?" Then I usually say, "well, I have my good days and my bad days" and leave it at that. I may be struggling to put one foot in front of the other..I mean literally. I have lots of symptoms of MS, like my feet not going where my brain tells them to, and having to think, okay, this foot goes here, etc..I may be so dizzy that walking seems like a rollercoaster, or my head pounding like a bass drum, but I just look at them and say "thanks" and "good to see you".. If I talk to a stranger and they see my cane, or ankle supports, whatever, I just tell them I have multiple infections that are chronic and ruin my immune system. Like on a plane going to see llmd, they ask "why do you travel so far to see a doc? can't they treat that it tx?" I'm just like, no, they can't and won't, so I have to travel so I don't have to wear my leg braces to walk. They seem to get it when you refer to medical hardware, they can see. Otherwise, it feels like they think you're making it up. More than regular people not believing me, what gets me the most is doctors who just dismiss symptoms that I find very disturbing and have difficulty dealing with on a daily basis. If nothing shows on my bloodwork, which is mainly "perfect" then I'm fine, period. What is it about bloodwork that says "everything" about you? It's not right. Bloodwork can't tell the whole story. They admit to you that the blood tests for many things aren't accurate, but then if you don't test positive, no treatment. It just sucks! Yeah, I'm a little cranky with all this right now.
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
it's ok, hon, crank away... we all feel that way.
i really went downhill after loosing my doc in denton. i don't think there's one doc in texas that treats lyme.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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James1979
Unregistered
posted
Randi - I know of a good LLMD in Houston.
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
really? pm me please. wish there was somebody a little closer but beggers can't be choosers...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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James1979
Unregistered
posted
Randi - I sent a PM. Hope it helps.
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scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
I wrap my Picc in the coban wrap so it too looks like a sport injury. I got to try to let it hang out w/ blood in the line next time we have a party! I should also expose my Hickman line scar on my chest from the infection too while I'm at it. LOL
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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everyone always comments on how great i look when i feel like death.
they only take me seriously when they see me having convulsions. it's so frustrating!
they also say the same things like "why don't you just see a doctor who takes insurance,"
and "there has to be someone closer."
if only they were right!!!
now everyone is telling me how blessed i am to have a good doctors appointment, and i must be so happy, but i'm up worring about the money it cost us all night long. nobody gets it!
tracy, i can't wait to get IV treatment one day for that reason! then maybe people would realize something is actually wrong with me, because telling them how terrible i feel doesn't phase them!
Posts: 442 | From usa | Registered: Oct 2010
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posted
My favorite (one of them) is when my mom says "oh, is this a "tired" day?". I have come to despise the word "tired", I am not tired, I don't nap, I only sleep 6 or 7 hours a night, but I spend 16- 20 hours a day in bed.
Maybe instead of turning down invitations I could just invite people to come over and lay in bed with me. I wonder if they would "get it" as I am curled into a ball and crying from pain?
-------------------- 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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James1979
Unregistered
posted
quote:Originally posted by mom2kids: My favorite (one of them) is when my mom says "oh, is this a "tired" day?".
That's messed up. I can't imagine how annoying that must be.
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they think our exhaustion is the same as them just being tired.
there are clearly different levels of tiredness though, and they have never experienced or level
i wish people could see me at home as well... they have no idea what my life is really like!
Posts: 442 | From usa | Registered: Oct 2010
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Thanks, but I don't usually even bother getting out of bed - I usually just bring my bed with me, but tonite couldn't manage to do so, so I'm here without it, for once...
To be said with a straight face...
Posts: 13116 | From San Francisco | Registered: May 2006
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Yeah, my friend also thinks it's just "tired," and said maybe you should take a nap when you need it? She meant well, but naps and sleep doesn't do all that much for this industrial grade fatigue, and for not being able to be upright without passing out. It's so beyond most people's comprehension.
darwinsdream, you said it beautifully, talking about your family being in denial all around. Mine, too. And they don't want to deal with me, because they know that I'm not. I won't get with the denial program. Not just about Lyme or illness, about our family, what we grew up with, and the consequences of it all.
Posts: 3771 | From around | Registered: Mar 2008
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quote:Originally posted by katiebobatie: I try to get out on the weekends for the sake of my sanity...
But it completely wears me out, so afterwards I'm back in bed until the next weekend rolls around.
But then it's really frustrating, because people say things like ``I'm glad you're feeling so good!''
I can't even remember what "feeling good" feels like!
I have to get out once in a while for my mental health, and for my husband's.
Feel free to share your own frustrations
I totally relate to your post. My husband has Lyme, they think, and he is spending sometimes 20 hours at a time in bed. We did go out of town thank God, but he spent a lot of time in the hotel room bed.
When he did get up and go out to eat for example, (then right back to bed) he would post on Facebook.
So then his sister would tell other family members that he could not "be that sick" because he was so active. OMG Made me furious.
If I told people how much time my husband spent in bed, in pain, extreme fatigue they would not believe me. We have gradually stopped having friends.
I took him to a lab for blood draws yesterday, including a few vials which will go to IGX. We brought the dog, and while the blood was spinning in the centrifuge we went out to some lawn and trees behind the building w our dog. It was sort of like a date.......on the lawn, past the dumpsters. The dog at least was happy.
I hope that lab comes up with some answers. His quality of life is gone, he is just wiped out. I am glad I found Lyme.net.
Posts: 47 | From Pacific Northwest | Registered: Jul 2011
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quote:Originally posted by katiebobatie: I try to get out on the weekends for the sake of my sanity...
But it completely wears me out, so afterwards I'm back in bed until the next weekend rolls around.
But then it's really frustrating, because people say things like ``I'm glad you're feeling so good!''
I can't even remember what "feeling good" feels like!
I have to get out once in a while for my mental health, and for my husband's.
Feel free to share your own frustrations
I totally relate to your post. My husband has Lyme, they think, and he is spending sometimes 20 hours at a time in bed. We did go out of town thank God, but he spent a lot of time in the hotel room bed.
When he did get up and go out to eat for example, (then right back to bed) he would post on Facebook.
So then his sister would tell other family members that he could not "be that sick" because he was so active. OMG Made me furious.
If I told people how much time my husband spent in bed, in pain, extreme fatigue they would not believe me. We have gradually stopped having friends.
I took him to a lab for blood draws yesterday, including a few vials which will go to IGX. We brought the dog, and while the blood was spinning in the centrifuge we went out to some lawn and trees behind the building w our dog. It was sort of like a date.......on the lawn, past the dumpsters. The dog at least was happy.
I hope that lab comes up with some answers. His quality of life is gone, he is just wiped out. I am glad I found Lyme.net.
Posts: 47 | From Pacific Northwest | Registered: Jul 2011
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posted
not quite sure what that little blue figure i put in my post is doing.....
Posts: 47 | From Pacific Northwest | Registered: Jul 2011
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James1979
Unregistered
posted
quote:Originally posted by Robin123: I just thought of a good response tonite:
Thanks, but I don't usually even bother getting out of bed - I usually just bring my bed with me, but tonite couldn't manage to do so, so I'm here without it, for once...
to be honest, we just bought a motorhome so my husband can literally drive my bed around with us, LOL
Posts: 442 | From usa | Registered: Oct 2010
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i know what you mean. i am sleeping 15 hours a day now, but i still don't feel rested.
BP-Ladybug,
your poor husband people think the same thing about me... that i must not be that sick.
if your husband and i posted statuses about how awful we feel all the time, everyone would tell us to look on the bright side and stop being so negative.
there's no way to win!
i hope your husband is able to get the help he so desperately needs soon!
james,
haha! that's hilarious!
i've noticed there's a lot of funny people here. at least lyme can't kill our sense of humor!
i tell people that my funny bone is my favorite bone, because it's the only bone that doesn't hurt!
Posts: 442 | From usa | Registered: Oct 2010
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posted
[QUOTE]Originally posted by katiebobatie: [QB] haha robin! that's awesome!!!
to be honest, we just bought a motorhome so my husband can literally drive my bed around with us, LOL ...................................................
Wow, Katie - you mean what I wrote is actually now true? Now the joke's on me - have bed, will travel!
Posts: 13116 | From San Francisco | Registered: May 2006
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James1979
Unregistered
posted
Here's an excellent article about how the suffering of Lyme is ignored: http://ow.ly/5VF5L
When the Lyme patient broke a bone and had a cast, she was shocked at how compassionate people were. But they never gave a crap about her Lyme disease.
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James, I had the same experience when I was on crutches for an obviously sprained ankle. Everyone instantly got up and gave me a seat on the bus. It was very relaxing for the time that it lasted.
I was sooo jealous of my ankle for receiving that understanding, and it showed me it was all about the common awareness of a health condition.
Posts: 13116 | From San Francisco | Registered: May 2006
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