Hello everyone! Sorry I haven't written in a long time! A lot has been going on though since I last posted.
Both of my sons are schooling at home now with on line schools. My youngest son was the first one who started this past school year. My older son just started mid year a few weeks ago. I am sorry to say that this is because they are not well enough to attend school all day every day. I am sad that they miss out of some things at the regular school but we do our best to keep them social still. Unfortunately this was our only option. So it's not like we had much of a choice. We did try a school tutor with my older son for a few months. His grades were dropping and the teachers were not sending home work on a regular basis. So we had to pull him out :(
Since July of 2009 we have been traveling from Ohio to Wisconsin to see a Lyme doctor. Myself and my younger son have seen some improvements but we are stuck right now and can't seem to improve any longer. I believe there are other issues going on like thyroid, adrenal issues, yeast, etc. My oldest son has not really been improving. His main symptoms is chronic fatigue. I feel like the way he has not progressed that there is something more going on that needs to be found.
With all that being said we have found another doctor to try. This will be our 3rd Lyme doctor in 2 1/2 yrs. My theory is if you are no longer improving that you move on. We will now be traveling to North Carolina. We actually have our 1st appt on March 11th. So we leave next Wednesday to go down there. I really hope she is able to help us! I had a few other doctors that I really wanted to go to but they were not affordable. If you all remember I said in the past that many of these doctors can't take insurance. So we have to pay and then we can submit it to our insurance and if we are lucky we might be some of it back. Or maybe not? It is very expensive. First initial appointments can range from $400 a person to $1000 a person. That doesn't include any blood work that may need done with a lab that may not take insurance either. Some of the really good doctors wanted to see us monthly so there would be no way we could afford them!
As far as life in general goes these days I don't get out much. (my house is my safe haven!) Other then basic things I need to do I don't really socialize much anymore. Many reasons for that. But one big reason is that I have pulled away from most of the people in my life who have never taken the time to discuss our illness with me. (to my surprise this is mostly family btw) People just don't understand how it makes me feel that they have never said anything to me. It leaves me to wonder in my head what they really think? Do they care? Do they even believe me? Do they take it seriously or do they think it's no big deal? Many will say they say nothing because they don't know what to say. I can assure you this is the absolute worst way to handle it! Saying nothing is the worst feeling ever :( This illness has changed our lives totally! People just have no idea what we have lost because of it. Especially the things the kids have had to give up. We have had to endure the loss and devestation of this all on our own. Many nights of crying and many days of not knowing what to do or where to turn. This has made us closer as a family but has also caused us to push away others who are not there for us. If I am distant from you then this is why.
So tell me this...Why would we want to do this on purpose? I mean who would want to fake being sick and have to give up so many things in their lives? That is just crazy!! It sucks having an illness that noone understands! It sucks having an illness that noone wants to treat! It sucks having to watch your kids give up so much of their precious childhood! I would never wish this on anyone!
Another thing some people have done is they will talk to me a little about it but then they act like they don't believe me when I talk about it to them. This also bothers me! Yes I get that it seems unreal that we all have Lyme disease. It isn't normal that multiple people in the same house or family have the same disabling illness. But guess what it is normal with Lyme disease. Whether or not you know that is not the point. Thousands of entire families have this illness. Many even have both parents with it and noone can work. Many can't afford to get treatment because they can't work. Many are going to lose their homes or have already lost their homes. But all have lost so much from that tiny little tick that most people don't take seriously!
For the few people in my life that have taken the time to sit with me and talk and get a general understanding of what is going on I would like to thank you! From the bottom of my heart...it means more to me then I can say!!
Wednesday, March 2, 2011
Sunday, May 30, 2010
Bartonella treatment & Dysautonomia...both are the DEVIL!
I haven't blogged in some time! A lot going on lately though. I have been attempting to home school Brandon because we are all currently treating Bartonella. I have decided today that the co-infection Bartonella is the DEVIL!! Screw Lyme..this one takes the cake! So we are all attempting to treat this nasty infection. It tends to cause a lot of psychological/neurological symptoms. (Moody, irritability, depression, etc)
So I am taking Flagyl and Clindamycin. Flagyl is a cyst buster so it kills the bugs that hide in cyst form. The boys are taking Cefdinir and Rifampin (the evil med!) When I tried to take that one it caused me to be severely moody!
Brandon is still having troubles with insomnia. Most of his symptoms come out at night time also. Then we deal with fatigue during the day. So we do school work in the late afternoon/early evening. Both of us are up all night and sleep all day. Yes this is the fun that our life has become!
Adam on the other hand sleeps too much. He has a lot of fatigue and leg weakness. Some days he will go to school; come home and go right to sleep again from 3pm to 9pm; get up and eat, take meds and shower; then go back to bed until 7am to go to school again. He can do this at any time and for days at a time. Sometimes all week!
Adam seems to tolerate the meds pretty well. Brandon has a lot of troubles with his stomach and can't tolerate meds as well.
So how am I? Well most days I don't know how I am because I am too busy taking care of sick kids to worry about me. I am on the back burner. Then it catches up with me and I fall apart.
Today was a bad day. Seems to be many lately where I am a mess. Moody, mean, irritable, and severely depressed! I think it's from the Bartonella treatment. Happens every time I try to treat this bacteria. I already normally have mood swings and severe anxiety. So when I try to treat this it gets 100 time worse. Sometimes even feeling like taking a whole bottle of sleeping pills and going to sleep! (don't worry I most likely won't do that...since taking care of the kids is my main priority that would be horribly selfish of me!) Though these feelings of not being able to control your moods are so horrible! You know you feel so bad and can not do anything about it. Then you treat others badly too :( I try all day to "cheer myself up"...as if it were that easy...sigh...
Anyways, I am rambling on this blog. Usually I post more info for everyone but just not feeling up to it lately. Though I do want to share a few links to a problem that I have with lyme that causes me to be severely fatigued. It is also why I have a severe heat intolerance and stay in the AC all summer instead of outside!
Many people with lyme (and some without) have what's called Dysautonomia or POTS (postural tachycardia syndrome).
The below information explains a lot of the problems that I have with heat intolerance, fatigue and anxiety. Brandon also has these same problems. Adam has some of them.
Check this site out...(just copy and paste it into your web browser)
http://www.potsplace.com/
(Below is a paragraph from the site above)
Dysautonomia literally means dysregulation of the autonomic nervous system. The autonomic nervous system is the master regulator of organ function throughout the body. It is involved in the control of heart rate, blood pressure, temperature, respiration, digestion and other vital functions. Dysregulation of the autonomic nervous system can produce the apparent malfunction of the organs it regulates. For this reason, dysautonomia patients often present with numerous, seemingly unrelated maladies.
Here is another link...(just copy and paste it into your web browser)
http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome#Symptoms
Here is a list of the symptoms that I have (more are listed in the links above)
(These symptoms can be random but note that heat, exercise and eating can exacerbate symptoms)
~ lightheadedness, sometimes called pre-syncope (pre-fainting)
~ dizziness (but not vertigo, which is also called dizziness)
~ exercise intolerance
~ extreme fatigue
~ generalized weakness
~ excessive thirst (polydipsia)
~ cold extremities
~ disorientation
~ dyspnea (shortness of breath)
~ headache
~ muscle weakness & tremors
~ visual disturbances
~ heart palpitations
~ excessive sweating
~ intolerance to heat
~ numbness or tingling sensations
~ noise & light sensitivity
Autonomic dysfunction is thought to cause additional gastrointestinal symptoms:
~ abdominal pain or discomfort
~ bloating after meals
~ feeling full quickly
~ constipation & diarrhea
~ nausea
~ bladder dysfunction (excessive urination)
Can also cause cognitive difficulties like:
~ brain fog
~ decreased mental stamina
~ depression
~ difficulty finding the right word
~ impaired concentration
~ sleep disorders
Inappropriate levels of epinephrine (adrenaline) and norepinephrine (stress hormone) lead to anxiety-like symptoms:
~ chills
~ feelings of fear
~ flushing
~ overheating
~ nervousness
~ over-stimulation
~ Chemical sensitivities (May have multiple chemical sensitivity and can be very sensitive to medications - may only need small doses) This is a big one for me! I have a low or zero tolerance for the following: alcohol, caffiene, many prescription medications, 2nd hand smoke (yes it's a chemical, actually many!), strong perfumes or other strong smells (again chemicals). I am sure I am missing some but you get the point...
Symptoms of POTS overlap considerably with those of generalized anxiety disorder, and a misdiagnosis of an anxiety disorder is not uncommon.
This link actually lists Lyme disease as a cause of Dysautonomia!
http://en.wikipedia.org/wiki/Dysautonomia#Causes
So I am taking Flagyl and Clindamycin. Flagyl is a cyst buster so it kills the bugs that hide in cyst form. The boys are taking Cefdinir and Rifampin (the evil med!) When I tried to take that one it caused me to be severely moody!
Brandon is still having troubles with insomnia. Most of his symptoms come out at night time also. Then we deal with fatigue during the day. So we do school work in the late afternoon/early evening. Both of us are up all night and sleep all day. Yes this is the fun that our life has become!
Adam on the other hand sleeps too much. He has a lot of fatigue and leg weakness. Some days he will go to school; come home and go right to sleep again from 3pm to 9pm; get up and eat, take meds and shower; then go back to bed until 7am to go to school again. He can do this at any time and for days at a time. Sometimes all week!
Adam seems to tolerate the meds pretty well. Brandon has a lot of troubles with his stomach and can't tolerate meds as well.
So how am I? Well most days I don't know how I am because I am too busy taking care of sick kids to worry about me. I am on the back burner. Then it catches up with me and I fall apart.
Today was a bad day. Seems to be many lately where I am a mess. Moody, mean, irritable, and severely depressed! I think it's from the Bartonella treatment. Happens every time I try to treat this bacteria. I already normally have mood swings and severe anxiety. So when I try to treat this it gets 100 time worse. Sometimes even feeling like taking a whole bottle of sleeping pills and going to sleep! (don't worry I most likely won't do that...since taking care of the kids is my main priority that would be horribly selfish of me!) Though these feelings of not being able to control your moods are so horrible! You know you feel so bad and can not do anything about it. Then you treat others badly too :( I try all day to "cheer myself up"...as if it were that easy...sigh...
Anyways, I am rambling on this blog. Usually I post more info for everyone but just not feeling up to it lately. Though I do want to share a few links to a problem that I have with lyme that causes me to be severely fatigued. It is also why I have a severe heat intolerance and stay in the AC all summer instead of outside!
Many people with lyme (and some without) have what's called Dysautonomia or POTS (postural tachycardia syndrome).
The below information explains a lot of the problems that I have with heat intolerance, fatigue and anxiety. Brandon also has these same problems. Adam has some of them.
Check this site out...(just copy and paste it into your web browser)
http://www.potsplace.com/
(Below is a paragraph from the site above)
Dysautonomia literally means dysregulation of the autonomic nervous system. The autonomic nervous system is the master regulator of organ function throughout the body. It is involved in the control of heart rate, blood pressure, temperature, respiration, digestion and other vital functions. Dysregulation of the autonomic nervous system can produce the apparent malfunction of the organs it regulates. For this reason, dysautonomia patients often present with numerous, seemingly unrelated maladies.
Here is another link...(just copy and paste it into your web browser)
http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome#Symptoms
Here is a list of the symptoms that I have (more are listed in the links above)
(These symptoms can be random but note that heat, exercise and eating can exacerbate symptoms)
~ lightheadedness, sometimes called pre-syncope (pre-fainting)
~ dizziness (but not vertigo, which is also called dizziness)
~ exercise intolerance
~ extreme fatigue
~ generalized weakness
~ excessive thirst (polydipsia)
~ cold extremities
~ disorientation
~ dyspnea (shortness of breath)
~ headache
~ muscle weakness & tremors
~ visual disturbances
~ heart palpitations
~ excessive sweating
~ intolerance to heat
~ numbness or tingling sensations
~ noise & light sensitivity
Autonomic dysfunction is thought to cause additional gastrointestinal symptoms:
~ abdominal pain or discomfort
~ bloating after meals
~ feeling full quickly
~ constipation & diarrhea
~ nausea
~ bladder dysfunction (excessive urination)
Can also cause cognitive difficulties like:
~ brain fog
~ decreased mental stamina
~ depression
~ difficulty finding the right word
~ impaired concentration
~ sleep disorders
Inappropriate levels of epinephrine (adrenaline) and norepinephrine (stress hormone) lead to anxiety-like symptoms:
~ chills
~ feelings of fear
~ flushing
~ overheating
~ nervousness
~ over-stimulation
~ Chemical sensitivities (May have multiple chemical sensitivity and can be very sensitive to medications - may only need small doses) This is a big one for me! I have a low or zero tolerance for the following: alcohol, caffiene, many prescription medications, 2nd hand smoke (yes it's a chemical, actually many!), strong perfumes or other strong smells (again chemicals). I am sure I am missing some but you get the point...
Symptoms of POTS overlap considerably with those of generalized anxiety disorder, and a misdiagnosis of an anxiety disorder is not uncommon.
This link actually lists Lyme disease as a cause of Dysautonomia!
http://en.wikipedia.org/wiki/Dysautonomia#Causes
Wednesday, March 31, 2010
No Known Cause??
So I haven't blogged in awhile...mostly because I have alot going on in my mind and can't really stop to focus on one thought long enough to put it into words.
Thank goodness it's Spring Break and Summer can't come soon enough. And not for the same reasons most people want them to come. But because my kids are struggling so bad lately with their illness and being well enough to get to school. We are all tired and really need a break. But I will save that for another blog....
I have been thinking of something lately and would like others input. If you have an opinion on why this might be please do share. Feel free to comment on any of my blogs. Pretty sure I set it so anyone can comment.
But anyways...I have been thinking about all of the current illnesses and syndromes that have "no known cause". It's interesting because it seems to me like when the medical community doesn't know what is wrong with you, instead of saying they don't know, they bind a bunch of symptoms together, give it a name, create a drug to help mask the symptoms and then say it has "no known cause"...
More interesting then that is the fact that many people are ok with this "no known cause" instead of wanting to find a cause. I guess I don't get it? Maybe it's because I read so much about viruses and bacteria and how so many of them can trigger illnesses or autoimmune diseases. Or maybe because I am the type of person that always askes why or has to get to the root of the problem to solve it. I guess it's all of the above...
So I have to ask for those of you who don't agree with me...why wouldn't you want to test for these viruses or bacteria? Then you can treat the cause. Is it because your doctor never suggested it? Why is it ok for us to just suffer and take the drugs so that the drug companies and doctors can make more money? Does anyone else think this is messed up or is it just me?? You know there is no money in it for them if it's just simply a bacteria or a virus. Do you know how many natural herbs there are that kill bacteria and viruses?? They don't make money off of herbs...
Why does this bother me so much? Well probably because I know many people who have some of these very same "no known cause" illnesses and I hate to see people have to live like that if they don't have to. Especially kids!!
If you have Fibromyalgia, Chronic Fatigue Syndrome, ALS (Lou Gehrig's Disease) Rheumatoid Arthritis or other autoimmune diseases please do some research on your own. Don't take what a doctor says just because he is a doctor. He is human too. He also doesn't specialize in everything. A good doctor will admit when he just doesn't know what is wrong with you. Unfortunately, I haven't run into many of those kinds.
If I had not done my own research I am afraid to think of where I would be right now. I diagnosed myself (it was confirmed by a specialist and testing) but I made the diagnosis. My arthritis, neurological symptoms and chronic fatigue were so bad I barely left the couch for years. So I used my laptop to researched day and night. I was determined to find the cause. Why? Because I was not living anymore and I was slowly dying if not physically for sure mentally!
During my many years of research I learned so much about the human body and organs and how it all works. I took time to learned a little about every disease that I could find in hopes that one of them would be my answer. If I had not done that my doctor may still be running me here and there for test after test. Next thing you know I'd have 5 diagnosis's for each set of problems. Would be taking drugs to mask the symptoms. When all along the lyme bacteria would have done more and more damage to my body. I might even be in a wheel chair by now! Or worse yet in the ground!
So again I ask why are we ok with this? Maybe its because it's just easier to take the doctors word for it? Maybe it's fear of the unknown? Maybe we just think our doctor knows all there is to know? This is your health people! It's more important then most things in life. If you don't have your health then you really don't have much of a life. If you don't think that is true then I can assure you once you don't have your health anymore you will know it is true! Please don't leave your health solely in the hands of a doctor. Become your own advocate. Educate yourself and inform yourself. This also goes for vaccines (yes another blog topic someday). But inform yourself because you have choices that you may not even know you have.
I can assure you as someone with a chronic health condition that you don't want to live like this if you don't have to. Or worse yet if your child is sick you need to do all you can to help them. I mean move heaven and earth if you have to! Their lives and futures are in our hands and as parents it is our duty!
Please know that I am not judging those that don't think like me. I am simply trying to open the minds of those who don't and will maybe say "hmm I never thought of that!"
I will leave you with this...As I was typing this a commercial came on for Lyrica. A drug to treat Fibromyalgia. So I find it interesting that they can create a drug to treat an illness that has "no known cause". Food for thought....
Thank goodness it's Spring Break and Summer can't come soon enough. And not for the same reasons most people want them to come. But because my kids are struggling so bad lately with their illness and being well enough to get to school. We are all tired and really need a break. But I will save that for another blog....
I have been thinking of something lately and would like others input. If you have an opinion on why this might be please do share. Feel free to comment on any of my blogs. Pretty sure I set it so anyone can comment.
But anyways...I have been thinking about all of the current illnesses and syndromes that have "no known cause". It's interesting because it seems to me like when the medical community doesn't know what is wrong with you, instead of saying they don't know, they bind a bunch of symptoms together, give it a name, create a drug to help mask the symptoms and then say it has "no known cause"...
More interesting then that is the fact that many people are ok with this "no known cause" instead of wanting to find a cause. I guess I don't get it? Maybe it's because I read so much about viruses and bacteria and how so many of them can trigger illnesses or autoimmune diseases. Or maybe because I am the type of person that always askes why or has to get to the root of the problem to solve it. I guess it's all of the above...
So I have to ask for those of you who don't agree with me...why wouldn't you want to test for these viruses or bacteria? Then you can treat the cause. Is it because your doctor never suggested it? Why is it ok for us to just suffer and take the drugs so that the drug companies and doctors can make more money? Does anyone else think this is messed up or is it just me?? You know there is no money in it for them if it's just simply a bacteria or a virus. Do you know how many natural herbs there are that kill bacteria and viruses?? They don't make money off of herbs...
Why does this bother me so much? Well probably because I know many people who have some of these very same "no known cause" illnesses and I hate to see people have to live like that if they don't have to. Especially kids!!
If you have Fibromyalgia, Chronic Fatigue Syndrome, ALS (Lou Gehrig's Disease) Rheumatoid Arthritis or other autoimmune diseases please do some research on your own. Don't take what a doctor says just because he is a doctor. He is human too. He also doesn't specialize in everything. A good doctor will admit when he just doesn't know what is wrong with you. Unfortunately, I haven't run into many of those kinds.
If I had not done my own research I am afraid to think of where I would be right now. I diagnosed myself (it was confirmed by a specialist and testing) but I made the diagnosis. My arthritis, neurological symptoms and chronic fatigue were so bad I barely left the couch for years. So I used my laptop to researched day and night. I was determined to find the cause. Why? Because I was not living anymore and I was slowly dying if not physically for sure mentally!
During my many years of research I learned so much about the human body and organs and how it all works. I took time to learned a little about every disease that I could find in hopes that one of them would be my answer. If I had not done that my doctor may still be running me here and there for test after test. Next thing you know I'd have 5 diagnosis's for each set of problems. Would be taking drugs to mask the symptoms. When all along the lyme bacteria would have done more and more damage to my body. I might even be in a wheel chair by now! Or worse yet in the ground!
So again I ask why are we ok with this? Maybe its because it's just easier to take the doctors word for it? Maybe it's fear of the unknown? Maybe we just think our doctor knows all there is to know? This is your health people! It's more important then most things in life. If you don't have your health then you really don't have much of a life. If you don't think that is true then I can assure you once you don't have your health anymore you will know it is true! Please don't leave your health solely in the hands of a doctor. Become your own advocate. Educate yourself and inform yourself. This also goes for vaccines (yes another blog topic someday). But inform yourself because you have choices that you may not even know you have.
I can assure you as someone with a chronic health condition that you don't want to live like this if you don't have to. Or worse yet if your child is sick you need to do all you can to help them. I mean move heaven and earth if you have to! Their lives and futures are in our hands and as parents it is our duty!
Please know that I am not judging those that don't think like me. I am simply trying to open the minds of those who don't and will maybe say "hmm I never thought of that!"
I will leave you with this...As I was typing this a commercial came on for Lyrica. A drug to treat Fibromyalgia. So I find it interesting that they can create a drug to treat an illness that has "no known cause". Food for thought....
Thursday, March 4, 2010
The mask is coming off!
Some may be wondering what is up with my recent status updates on facebook. Or some just maybe don't care and are rolling their eyes at me or just simply not reading what I say...(Below are the status's that I am talking about)
1st one.. "Just wants to say to anyone who thinks we are faking being sick or our illness isn't serious or who rolls their eyes when I post info about lyme...feel free to come over on a day like today when my child can't walk down the steps due to leg weakness and pain..and while you are at it stick around to take care of him cause I can't go up & down the steps myself!"
2nd one.. "has learned that when you have a chronic illness that many people don't know much about they tend to run the other direction...people who I barely know or haven't talk to since high school have helped me more then some of my own family...wow what you find out when this happens to your family...interesting!!"
Comment from Kathy.. "Can I repost this on my profile... gee. I have had a small heard of people gradually vanish from my life since Lyme hit our family. Almost no one calls to check in, no one comes to help and then a few add injury to insult and question if I have actually been sick and wonder if I have been making it up. Yeah, you learn a lot about people thru trials like this"
My reply.. "Kathy, this is what we are going through too. Some family not believing us either. Or some not thinking it's that bad. Well most don't know what goes on behind our closed doors because they simply don't ask. So I just pretend all is peachy when I see them. Oh how I enjoy that! Not! Some never even said one word to me about it since I told them. It bothers me a lot but I don't say anything. Well I am tired of putting my fake face on and going to parties..."
I actually had about 20 to 30 replied comments on each of these. Probably because I have several hundred friends that also have lyme disease. So if we are faking it then I guess they are too?? Hmmm..that's interesting!
It is sad to me that so many people are sick and I hear over and over again that their family and friends have abandon them or don't believe them or treat them badly or just plain ignore them as if they are crazy! Oddly enough I have never heard of a person who had cancer say that this has happened to them! If this isn't true then please do share with me...
Since I have found out my boys, my mom and I have lyme disease over a year ago it has been shocking that some of our family has abandon us, doesn't believe us, or just ignores us and acts like nothing is wrong. I guess you really learn who people are when this happens to you!
I have tried to put on my happy face when I go to events and parties...But inside I am hurt and very angry and I try not to show it. Well lately it is getting to me and I can not hold it in any longer. I have decided that I need to get it out and what people do with it is not my problem. If people never speak to me again I just can't care anymore!
I can understand that people don't really know anything about lyme disease so maybe for them it is awkward to talk to me about it or to know the seriousness that we are going through. Unlike cancer because if you say to someone that you have cancer they look at you like you are about to die. But I have tried to reach out to people. I have tried to send them information and links to my blogs for over a year. I never get any responses so I just stopped doing it.
Do I expect people to understand what I am going through...NO
Do I expect people to learn everything under the sun about my disease...NO
What I do expect from family and friends is some ACKNOWLEDGEMENT, belief, kindness and compassion! I mean if you were sick I can tell you I'd be the 1st one saying "Hey I read what you sent me and I am very sorry to hear you are going through this! I hope everything will be ok and if you need anything let me know."
IS THAT REALLY SO HARD PEOPLE??? What ever happened to empathy in this world?? I guess I just can't understand because I am so not like that!!
You can't know the feeling that someone with an invisible chronic illness that noone understands has when they have to be around people who have never acknowledged their illness...it is unexplainably uncomfortable! All I can do is smile and make small talk and hope I can make it through the event without having any major symptoms. It feels like an elephant is in the room and noone has noticed it!
So if it seems as if I walk around with a chip on my shoulder now you know why!
1st one.. "Just wants to say to anyone who thinks we are faking being sick or our illness isn't serious or who rolls their eyes when I post info about lyme...feel free to come over on a day like today when my child can't walk down the steps due to leg weakness and pain..and while you are at it stick around to take care of him cause I can't go up & down the steps myself!"
2nd one.. "has learned that when you have a chronic illness that many people don't know much about they tend to run the other direction...people who I barely know or haven't talk to since high school have helped me more then some of my own family...wow what you find out when this happens to your family...interesting!!"
Comment from Kathy.. "Can I repost this on my profile... gee. I have had a small heard of people gradually vanish from my life since Lyme hit our family. Almost no one calls to check in, no one comes to help and then a few add injury to insult and question if I have actually been sick and wonder if I have been making it up. Yeah, you learn a lot about people thru trials like this"
My reply.. "Kathy, this is what we are going through too. Some family not believing us either. Or some not thinking it's that bad. Well most don't know what goes on behind our closed doors because they simply don't ask. So I just pretend all is peachy when I see them. Oh how I enjoy that! Not! Some never even said one word to me about it since I told them. It bothers me a lot but I don't say anything. Well I am tired of putting my fake face on and going to parties..."
I actually had about 20 to 30 replied comments on each of these. Probably because I have several hundred friends that also have lyme disease. So if we are faking it then I guess they are too?? Hmmm..that's interesting!
It is sad to me that so many people are sick and I hear over and over again that their family and friends have abandon them or don't believe them or treat them badly or just plain ignore them as if they are crazy! Oddly enough I have never heard of a person who had cancer say that this has happened to them! If this isn't true then please do share with me...
Since I have found out my boys, my mom and I have lyme disease over a year ago it has been shocking that some of our family has abandon us, doesn't believe us, or just ignores us and acts like nothing is wrong. I guess you really learn who people are when this happens to you!
I have tried to put on my happy face when I go to events and parties...But inside I am hurt and very angry and I try not to show it. Well lately it is getting to me and I can not hold it in any longer. I have decided that I need to get it out and what people do with it is not my problem. If people never speak to me again I just can't care anymore!
I can understand that people don't really know anything about lyme disease so maybe for them it is awkward to talk to me about it or to know the seriousness that we are going through. Unlike cancer because if you say to someone that you have cancer they look at you like you are about to die. But I have tried to reach out to people. I have tried to send them information and links to my blogs for over a year. I never get any responses so I just stopped doing it.
Do I expect people to understand what I am going through...NO
Do I expect people to learn everything under the sun about my disease...NO
What I do expect from family and friends is some ACKNOWLEDGEMENT, belief, kindness and compassion! I mean if you were sick I can tell you I'd be the 1st one saying "Hey I read what you sent me and I am very sorry to hear you are going through this! I hope everything will be ok and if you need anything let me know."
IS THAT REALLY SO HARD PEOPLE??? What ever happened to empathy in this world?? I guess I just can't understand because I am so not like that!!
You can't know the feeling that someone with an invisible chronic illness that noone understands has when they have to be around people who have never acknowledged their illness...it is unexplainably uncomfortable! All I can do is smile and make small talk and hope I can make it through the event without having any major symptoms. It feels like an elephant is in the room and noone has noticed it!
So if it seems as if I walk around with a chip on my shoulder now you know why!
Thursday, February 25, 2010
Psychiatric side of Lyme
Thank you in advance for anyone who reads this! I am going to try to not only blog sometimes about daily life but I will try to educate and raise awareness about lyme disease also.
Today is my youngest sons 11th birthday. Wow, how time flies! We had a nice dinner with family at Olive Garden and I made a yummy chocolate cake. I think he had a great day and was in a very good mood.
Yeah cause lately he has been very moody! I am not sure if this is lyme, his aspergers or early puberty. Or yikes for me if it's all 3 at once!!
I am going to find some good information to post here about the Psychiatric part of Lyme disease. I find it quit interesting and I think most people don't even know there is a link. I will also post some info about the cognitive problems it causes.
********************************************************************
Copy and past the below links into your internet browser to read more....I will post a paragraph from each link...
This is a really good brochure explaining the psychiatric side of lyme. I gave a copy to my own therapist before.
http://www.ilads.org/lyme_disease/Psychiatric_Brochure_08_08.pdf
"At any time after a tick bite, patients may also exhibit cognitive symptoms such as memory and concentration impairments and word-finding difficulties, ADHD-like symptoms, learning disabilities, OCD, crying spells, rages, depression/bipolar disorder, panic/anxiety disorders and psychosis - all may be caused or exacerbated by Lyme disease."
http://www.publichealthalert.org/Articles/pjlanghoff/psychiatric%20lyme%20disease.htm
"Psychosis, hallucinations, dementia, delusions, paranoia, rage, aggression, suicidal thinking, anxiety attacks, ADD, ADHD, OCD? words that would make any patient, physician, family member or researcher recoil when reading about the possibility that Lyme disease can cause one or more of these or other psychiatric issues."
http://www.lymeinfo.net/Shea-Leventhal.pdf
The cognitive problems associated with Lyme disease and other tick-borne illnesses include difficulty with:
1) attention and concentration,
2) speed and efficiency of processing information,
3) learning and memory,
4) auditory processing and language expression,
5) planning and organization and
6) multitasking.
These cognitive symptoms have a significant impact on learning and school performance.
There are also a lot of neurological problems associated with lyme disease. Once it gets into your brain and your nervous system it can cause a whole list of problems. I will post some of this information into future blogs so check back again.
Today is my youngest sons 11th birthday. Wow, how time flies! We had a nice dinner with family at Olive Garden and I made a yummy chocolate cake. I think he had a great day and was in a very good mood.
Yeah cause lately he has been very moody! I am not sure if this is lyme, his aspergers or early puberty. Or yikes for me if it's all 3 at once!!
I am going to find some good information to post here about the Psychiatric part of Lyme disease. I find it quit interesting and I think most people don't even know there is a link. I will also post some info about the cognitive problems it causes.
********************************************************************
Copy and past the below links into your internet browser to read more....I will post a paragraph from each link...
This is a really good brochure explaining the psychiatric side of lyme. I gave a copy to my own therapist before.
http://www.ilads.org/lyme_disease/Psychiatric_Brochure_08_08.pdf
"At any time after a tick bite, patients may also exhibit cognitive symptoms such as memory and concentration impairments and word-finding difficulties, ADHD-like symptoms, learning disabilities, OCD, crying spells, rages, depression/bipolar disorder, panic/anxiety disorders and psychosis - all may be caused or exacerbated by Lyme disease."
http://www.publichealthalert.org/Articles/pjlanghoff/psychiatric%20lyme%20disease.htm
"Psychosis, hallucinations, dementia, delusions, paranoia, rage, aggression, suicidal thinking, anxiety attacks, ADD, ADHD, OCD? words that would make any patient, physician, family member or researcher recoil when reading about the possibility that Lyme disease can cause one or more of these or other psychiatric issues."
http://www.lymeinfo.net/Shea-Leventhal.pdf
The cognitive problems associated with Lyme disease and other tick-borne illnesses include difficulty with:
1) attention and concentration,
2) speed and efficiency of processing information,
3) learning and memory,
4) auditory processing and language expression,
5) planning and organization and
6) multitasking.
These cognitive symptoms have a significant impact on learning and school performance.
There are also a lot of neurological problems associated with lyme disease. Once it gets into your brain and your nervous system it can cause a whole list of problems. I will post some of this information into future blogs so check back again.
Wednesday, February 24, 2010
Lyme Disease Awareness and why I am blogging
I used to blog on my myspace page when I was first diagnosed late 2008 and early 2009. I have copied my blogs from myspace and posted them into this new blog that I am starting.
Read the "About Me" section about why I am doing this blog.
I also want to raise awareness about lyme disease and assure you that it DOES exist in the state of Ohio. No matter what doctors are telling you.
Lyme Disease is not heard of in the public enough so many people either don't know what it is or think it is rare. It is not rare at all! Ticks are everywhere and can even be in your own back yard. Yes even in the state of Ohio. Ticks don't know where the borders ends and are very common in PA.
First discovered as Juvenile Rheumatoid Arthritis in 1975 in Lyme, Connecticut.
It is being misdiagnosed as Rheumatoid Arthritis, Multiple Sclerosis, Lou Gherig's Disease(ALS), Lupus, Chronic Fatigue Syndrome, Fibromyalgia, Autism and others.
You can get bit and not even know it. They can be a small as a poppy seed and they numb the area of the bite. Less then 50% of people even remember a bite.
There are 100+ symptoms because the bacteria can be anywhere in your body. It can go deep into your tissues and organs and effect your nervous system, your brain and memory, your muscles.
Some people are so sick they are in wheelchairs & some are dying! This disease can be treated with antibiotics if it it caught early. If it is caught late then it needs many months or years of treatment and could stay with you forever. The Lyme bacteria can hide deep in the tissue, muscle, organs and bones so that antibiotics can not kill it.
It is underdiagnosed because many doctors do not know enough to test for it. Or they are using the an outdated test by a lab that doesn't specialize in testing for lyme disease. There is a lab called Igenex that does a more accurate test but doctors are not using it or are not aware.
In the mean time many people are sick and don't know why! Then when they finally find a Lyme doctor they are denied long term treatment. Why? Because doctors are following treatment guidelines that say chronic lyme doesn't exist. Well I am proof that it does!
Please watch the lyme documentary called "Under Our Skin". I have a copy if anyone would like to see it to understand more about the seriousness of the illness. Also to understand why we have troubles finding a diagnosis, getting treated, finding doctors and getting insurance to pay!
Read the "About Me" section about why I am doing this blog.
I also want to raise awareness about lyme disease and assure you that it DOES exist in the state of Ohio. No matter what doctors are telling you.
Lyme Disease is not heard of in the public enough so many people either don't know what it is or think it is rare. It is not rare at all! Ticks are everywhere and can even be in your own back yard. Yes even in the state of Ohio. Ticks don't know where the borders ends and are very common in PA.
First discovered as Juvenile Rheumatoid Arthritis in 1975 in Lyme, Connecticut.
It is being misdiagnosed as Rheumatoid Arthritis, Multiple Sclerosis, Lou Gherig's Disease(ALS), Lupus, Chronic Fatigue Syndrome, Fibromyalgia, Autism and others.
You can get bit and not even know it. They can be a small as a poppy seed and they numb the area of the bite. Less then 50% of people even remember a bite.
There are 100+ symptoms because the bacteria can be anywhere in your body. It can go deep into your tissues and organs and effect your nervous system, your brain and memory, your muscles.
Some people are so sick they are in wheelchairs & some are dying! This disease can be treated with antibiotics if it it caught early. If it is caught late then it needs many months or years of treatment and could stay with you forever. The Lyme bacteria can hide deep in the tissue, muscle, organs and bones so that antibiotics can not kill it.
It is underdiagnosed because many doctors do not know enough to test for it. Or they are using the an outdated test by a lab that doesn't specialize in testing for lyme disease. There is a lab called Igenex that does a more accurate test but doctors are not using it or are not aware.
In the mean time many people are sick and don't know why! Then when they finally find a Lyme doctor they are denied long term treatment. Why? Because doctors are following treatment guidelines that say chronic lyme doesn't exist. Well I am proof that it does!
Please watch the lyme documentary called "Under Our Skin". I have a copy if anyone would like to see it to understand more about the seriousness of the illness. Also to understand why we have troubles finding a diagnosis, getting treated, finding doctors and getting insurance to pay!
Understanding Chronic Illness (posted 04/28/09)
Tuesday, April 28, 2009
Understanding Chronic Illness
(Reposted from a friend... edited a little)
This made me cry! If I could have come with such great words, this is actually what I would say to my friends and family!
Amy
****************************************************************
But You "LOOK" Good! The wrong thing to say to someone with a chronic illness.
What Is A Chronic Illness, Anyway?
A chronic illness is a disease or disorder that a person has to cope with on a continuous basis. Many people become so ill, they are unable to work and are forced to give up activities they have always enjoyed. Often their illness goes undiagnosed for years, leaving thousands of people frustrated, depressed and without answers to why their bodies will not cooperate with their desires.
But, They "LOOK" Fine! How Can They Be Ill?
Many chronic illnesses such as: Arthritis, Chemical Depression, Crohn's Disease, CFIDS, Cystic Fibrosis, Diabetes, Fibromyalgia, Heart Disorders, Hypothyroidism, IBS, Lyme Disease, Lupus, Multiple Sclerosis, Neurological Disorders, Osteoporosis, Parkinson�s, RSD, Women's Chronic Disorders and many, many others cannot be seen with the naked eye, but are nevertheless persistently keeping the person from enjoying life the way they once knew (this is only a sample of the dozens of illnesses which can be debilitating and not intended to be a complete list)!
Unfortunately, their families and friends are rarely supportive and understanding, because they do not see a broken bone or bleeding head to confirm the complaints. However, do not expect to see a disease that lives below the skin, because most illnesses are invisible until the person has had chemo or organ failure! Your friend or family member needs you to believe what they are saying is true, without judgment or question.
So, They Have "Good" & "Bad" Days, Right?
Actually, not everyone with a chronic illness has the same symptoms or degree of symptoms; yet, there are basically three stages in any chronic illness:
1) THE EARLY STAGE: This person may notice occasional symptoms or lack of energy. They start experiencing setbacks from activities which previously never took a thought. If diagnosed in this stage, which is rare, many can get help from their doctors and proper nutrition to cure or prevent further progression of the disease. This person has mostly "good" days with occasional "bad" days.
2) THE MIDDLE STAGE (or the Relapsing/Remitting Stage): This person may have frequent bouts of symptoms and is forced to make limitations for themselves in order to avoid extreme fatigue and relapse of illness. They reluctantly begin discovering that the simple things they used to enjoy, now must be done with care or sacrificed completely. In this stage, some can lower the frequency of relapse and progression of the disease with help from their doctors and proper nutrition. This person has both "good" and "bad" days, depending on activity and stress.
3) THE LATE STAGE (or the Chronic/Progressive Stage): This persons disease has progressed to the point where it does not remit. They live each and every day with symptoms that feel much like having the stomach flu, complete with extreme to unimaginable fatigue, muscle aches, weakness, nausea, cognitive difficulties, dizziness and/or pain.
When they push themselves to do what used to be easy, like dusting a piece of furniture, going to a relatives house or doing a load of laundry, they pay a high price, because their symptoms worsen to an unbearable level for days and even months. In cases like Multiple Sclerosis, the treating drugs available are affective only for persons in stages 1 and 2. This person does not have "good" days, only "bad" days and "horrific" days.
But, What If They "Give In" To The Illness?
When a young ice skater named Nancy Karrigan was assaulted and suffered a leg injury, she faced the possibility of losing all of which she had dreamed; the whole world cried with Nancy, because it could have meant the end of her skating career! Yet, when a person loses their job or is forced to give up their career due to illness, for some reason, people often treat them like they are choosing to do so; and, they are often insensitive to the fact that the sufferer has lost all for which they have worked, planned and hoped for their future.
Most people do not "give in" to illness; in fact, it is ingrained in our nature to fight to survive as hard and as long as humanly possibly. If you believe that your loved one is "giving in" to the illness, because they have given up their usual activities, this is just your perception of how they are handling their limitations.
When a person first experiences the effects of a chronic illness, they have a fantastic attitude about conquering it; they feel strong and invincible to its grip. Even if the disease progresses, they will continue to fight for their right to live the way they planned their lives to be; and, they will stay persistent in the battle until their bodies force them to make limitations.
Creating limitations for oneself is one of the hardest things a person can do. It goes against everything we are and everything we ever hoped to be. No one wants to be sick and no one ever chooses to give up those things in life which bring such joy. Yet, these limitations are mandatory in managing a chronic illness; so, respect their new boundaries by acknowledging their losses and supporting their need to say, "No."
We, as chronic illness sufferers, do not want to give up; we want to laugh, smile, look our best and enjoy life; after all, it is our incredible courage, perseverance and persistence to fight for our lives which make our painful disabilities seem invisible to the naked eye.
Well, I Still Don't Understand!
At least once in your life, you have probably experienced having to stay home from work or school, because you were too sick to go; incidently, I have yet to meet someone who has a cold or the flu tell me they are having the time of their lives and enjoying every minute of it! Or, you may have been hurt in an accident and were forced to give up activities you loved for weeks or even months; so, you know how stressful, depressing and frustrating being unable to do what you want to do can be!
Now, when I refer to being sick, I am not talking about feeling just a little "under the weather" or just not "up to" going to work that day. I am talking about being so sick you can barely sit up or talk, having a fever that makes every muscle ache and your bones feel like they are being crushed. Then, when you try to get up to go to the bathroom, your head pounds, your body feels like it weighs a ton and you become dizzy and nauseous.
Just imagine feeling that way every single day, week after week and year after year.
True, some chronic illness sufferers have a few "good days" in between, but many do not have any at all! So, if you see them out and smiling, does that mean they are having a "good day?" Not necessarily! Many times they cannot wait for a "good day" to get out, because they do not have them; thus, they make the sacrifice, sitting there in horrible agony and knowing they will pay dearly for it later!
No human being can be at peace with being sick day in and day out! In fact, most people become very frustrated and impatient after just a few hours; then, if it lasts a few days, they become panicked and angry about missing work, school or other activities; next, they become depressed and act like a week out of their busy lives is the end of the world! Yet, they often treat their loved ones like losing months and years out of their lives is no big deal! So, why would you expect your loved one to be happy with losing years of their lives, when you cannot stand to even lose a few days?
It is true, you will never fully comprehend what it is like to be chronically ill, with all of the loss and pain it poses. You will never know what it is like to feel horrible every day and you will never have a grasp at what it is like to watch your lifetime dreams come crashing down forever.
So, stop using the excuse that you do not have understanding and start focusing on whether or not you have compassion!
In all, your loved one just wants you see their courage in enduring a life of feeling sick, achy and exhausted all of the time; and, you have the capacity to know you would not want to feel this way every day yourself! You know how horrible it is to be sick and forced to put your life on hold for a while, so why dont you tell them how amazed you are at their strength and perseverance!
It Seems like I Am Always Saying The Wrong Thing!
What can sometimes be even harder to bear than the illness itself, is feeling alone in the daily struggle and mourning of lifelong dreams. As pieces of oneself die off bit by bit, isolation consumes them when others refuse to affirm their pain. By repeatedly trying to "cheer them up" and make them see the "bright side" you are not validating their pain, but instead saying, "I dont want to hear the truth" or "your losses dont matter." On the other hand, if you acknowledge their losses, they will no longer be compelled to gain your belief by having to explain their situation over and over again.
Resist the temptation to make a visual diagnosis by saying, "gee, you look like youre feeling good today" or "hey, you must be doing well." They may look like they are feeling well, because there is joy in their face from seeing you; however, your comment will only make them realize they are alone in their battle, since you are evidently unaware of their insurmountable hurdles.
In other words, by rebutting their answers with, "But you LOOK good," your friend really hears, "But, I dont believe you, because you look fine to me.
" Instead try, "I am so glad to see you," "wow, I cant imagine what you go through, you are amazing!" "you look nice today," or "how can I pray for you?"
Encourage your loved one by affirming your trust in them, loving them and showing them that they are still just as valuable to you even if they can no longer do the things they used to do; your willingness to acknowledge their losses will give them the strength and positive attitude they need to fight the illness, instead of wasting their energy fighting with you to believe. They are not seeking your pity or sympathy, they simply want your compassion; some will need your help, just listen, they will tell you how.
We, as chronic illness sufferers, do not want to give up; we want to laugh, smile, look our best and enjoy life; after all, it is our incredible courage, perseverance and persistence to fight for our lives which make our painful disabilities seem invisible to the naked eye.
"Learn To See With Your Ears!"
http://flash.lymenet.org/ubb/Forum3/HTML/008886.html
Understanding Chronic Illness
(Reposted from a friend... edited a little)
This made me cry! If I could have come with such great words, this is actually what I would say to my friends and family!
Amy
****************************************************************
But You "LOOK" Good! The wrong thing to say to someone with a chronic illness.
What Is A Chronic Illness, Anyway?
A chronic illness is a disease or disorder that a person has to cope with on a continuous basis. Many people become so ill, they are unable to work and are forced to give up activities they have always enjoyed. Often their illness goes undiagnosed for years, leaving thousands of people frustrated, depressed and without answers to why their bodies will not cooperate with their desires.
But, They "LOOK" Fine! How Can They Be Ill?
Many chronic illnesses such as: Arthritis, Chemical Depression, Crohn's Disease, CFIDS, Cystic Fibrosis, Diabetes, Fibromyalgia, Heart Disorders, Hypothyroidism, IBS, Lyme Disease, Lupus, Multiple Sclerosis, Neurological Disorders, Osteoporosis, Parkinson�s, RSD, Women's Chronic Disorders and many, many others cannot be seen with the naked eye, but are nevertheless persistently keeping the person from enjoying life the way they once knew (this is only a sample of the dozens of illnesses which can be debilitating and not intended to be a complete list)!
Unfortunately, their families and friends are rarely supportive and understanding, because they do not see a broken bone or bleeding head to confirm the complaints. However, do not expect to see a disease that lives below the skin, because most illnesses are invisible until the person has had chemo or organ failure! Your friend or family member needs you to believe what they are saying is true, without judgment or question.
So, They Have "Good" & "Bad" Days, Right?
Actually, not everyone with a chronic illness has the same symptoms or degree of symptoms; yet, there are basically three stages in any chronic illness:
1) THE EARLY STAGE: This person may notice occasional symptoms or lack of energy. They start experiencing setbacks from activities which previously never took a thought. If diagnosed in this stage, which is rare, many can get help from their doctors and proper nutrition to cure or prevent further progression of the disease. This person has mostly "good" days with occasional "bad" days.
2) THE MIDDLE STAGE (or the Relapsing/Remitting Stage): This person may have frequent bouts of symptoms and is forced to make limitations for themselves in order to avoid extreme fatigue and relapse of illness. They reluctantly begin discovering that the simple things they used to enjoy, now must be done with care or sacrificed completely. In this stage, some can lower the frequency of relapse and progression of the disease with help from their doctors and proper nutrition. This person has both "good" and "bad" days, depending on activity and stress.
3) THE LATE STAGE (or the Chronic/Progressive Stage): This persons disease has progressed to the point where it does not remit. They live each and every day with symptoms that feel much like having the stomach flu, complete with extreme to unimaginable fatigue, muscle aches, weakness, nausea, cognitive difficulties, dizziness and/or pain.
When they push themselves to do what used to be easy, like dusting a piece of furniture, going to a relatives house or doing a load of laundry, they pay a high price, because their symptoms worsen to an unbearable level for days and even months. In cases like Multiple Sclerosis, the treating drugs available are affective only for persons in stages 1 and 2. This person does not have "good" days, only "bad" days and "horrific" days.
But, What If They "Give In" To The Illness?
When a young ice skater named Nancy Karrigan was assaulted and suffered a leg injury, she faced the possibility of losing all of which she had dreamed; the whole world cried with Nancy, because it could have meant the end of her skating career! Yet, when a person loses their job or is forced to give up their career due to illness, for some reason, people often treat them like they are choosing to do so; and, they are often insensitive to the fact that the sufferer has lost all for which they have worked, planned and hoped for their future.
Most people do not "give in" to illness; in fact, it is ingrained in our nature to fight to survive as hard and as long as humanly possibly. If you believe that your loved one is "giving in" to the illness, because they have given up their usual activities, this is just your perception of how they are handling their limitations.
When a person first experiences the effects of a chronic illness, they have a fantastic attitude about conquering it; they feel strong and invincible to its grip. Even if the disease progresses, they will continue to fight for their right to live the way they planned their lives to be; and, they will stay persistent in the battle until their bodies force them to make limitations.
Creating limitations for oneself is one of the hardest things a person can do. It goes against everything we are and everything we ever hoped to be. No one wants to be sick and no one ever chooses to give up those things in life which bring such joy. Yet, these limitations are mandatory in managing a chronic illness; so, respect their new boundaries by acknowledging their losses and supporting their need to say, "No."
We, as chronic illness sufferers, do not want to give up; we want to laugh, smile, look our best and enjoy life; after all, it is our incredible courage, perseverance and persistence to fight for our lives which make our painful disabilities seem invisible to the naked eye.
Well, I Still Don't Understand!
At least once in your life, you have probably experienced having to stay home from work or school, because you were too sick to go; incidently, I have yet to meet someone who has a cold or the flu tell me they are having the time of their lives and enjoying every minute of it! Or, you may have been hurt in an accident and were forced to give up activities you loved for weeks or even months; so, you know how stressful, depressing and frustrating being unable to do what you want to do can be!
Now, when I refer to being sick, I am not talking about feeling just a little "under the weather" or just not "up to" going to work that day. I am talking about being so sick you can barely sit up or talk, having a fever that makes every muscle ache and your bones feel like they are being crushed. Then, when you try to get up to go to the bathroom, your head pounds, your body feels like it weighs a ton and you become dizzy and nauseous.
Just imagine feeling that way every single day, week after week and year after year.
True, some chronic illness sufferers have a few "good days" in between, but many do not have any at all! So, if you see them out and smiling, does that mean they are having a "good day?" Not necessarily! Many times they cannot wait for a "good day" to get out, because they do not have them; thus, they make the sacrifice, sitting there in horrible agony and knowing they will pay dearly for it later!
No human being can be at peace with being sick day in and day out! In fact, most people become very frustrated and impatient after just a few hours; then, if it lasts a few days, they become panicked and angry about missing work, school or other activities; next, they become depressed and act like a week out of their busy lives is the end of the world! Yet, they often treat their loved ones like losing months and years out of their lives is no big deal! So, why would you expect your loved one to be happy with losing years of their lives, when you cannot stand to even lose a few days?
It is true, you will never fully comprehend what it is like to be chronically ill, with all of the loss and pain it poses. You will never know what it is like to feel horrible every day and you will never have a grasp at what it is like to watch your lifetime dreams come crashing down forever.
So, stop using the excuse that you do not have understanding and start focusing on whether or not you have compassion!
In all, your loved one just wants you see their courage in enduring a life of feeling sick, achy and exhausted all of the time; and, you have the capacity to know you would not want to feel this way every day yourself! You know how horrible it is to be sick and forced to put your life on hold for a while, so why dont you tell them how amazed you are at their strength and perseverance!
It Seems like I Am Always Saying The Wrong Thing!
What can sometimes be even harder to bear than the illness itself, is feeling alone in the daily struggle and mourning of lifelong dreams. As pieces of oneself die off bit by bit, isolation consumes them when others refuse to affirm their pain. By repeatedly trying to "cheer them up" and make them see the "bright side" you are not validating their pain, but instead saying, "I dont want to hear the truth" or "your losses dont matter." On the other hand, if you acknowledge their losses, they will no longer be compelled to gain your belief by having to explain their situation over and over again.
Resist the temptation to make a visual diagnosis by saying, "gee, you look like youre feeling good today" or "hey, you must be doing well." They may look like they are feeling well, because there is joy in their face from seeing you; however, your comment will only make them realize they are alone in their battle, since you are evidently unaware of their insurmountable hurdles.
In other words, by rebutting their answers with, "But you LOOK good," your friend really hears, "But, I dont believe you, because you look fine to me.
" Instead try, "I am so glad to see you," "wow, I cant imagine what you go through, you are amazing!" "you look nice today," or "how can I pray for you?"
Encourage your loved one by affirming your trust in them, loving them and showing them that they are still just as valuable to you even if they can no longer do the things they used to do; your willingness to acknowledge their losses will give them the strength and positive attitude they need to fight the illness, instead of wasting their energy fighting with you to believe. They are not seeking your pity or sympathy, they simply want your compassion; some will need your help, just listen, they will tell you how.
We, as chronic illness sufferers, do not want to give up; we want to laugh, smile, look our best and enjoy life; after all, it is our incredible courage, perseverance and persistence to fight for our lives which make our painful disabilities seem invisible to the naked eye.
"Learn To See With Your Ears!"
http://flash.lymenet.org/ubb/Forum3/HTML/008886.html
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