posted
After years of doctors and being told I was depressed (which I told them each time that I wasn't but I started to believe it), I was finally diagnosed with Lyme's.
My bloodwork was positive for it. I am really feeling badly, my joints and muscles hurt so bad and will get so stiff I have to pop them to get them to bend.
I feel like I am going crazy, I can't think straight and my anger level is really elevated (which is terrible because I have three children).
I am so exhausted in the evenings I can barely move.
Here is what I am upset about, people just don't understand. I have friends just dismiss it, family members who try to be nice but I can tell they don't believe me, and co-workers who do the same thing.
How do I explain to my husband and kids that I am going crazy but it is the disease not me?
Is there anyone else who feels so alone during this?
Finding the site has been the first good thing I have come across.
posted
Can I get an administrator to move this to the General questions, I am new at this!
Posts: 14 | From Houston, Texas | Registered: Sep 2006
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I had the same experience with this illness. You will find many others here who are going through or have gone through the same thing.
This is a horridly isolating illness, and people don't understand a physical condition that can also affect a person's mind and their behavior.
It is also deeply disturbing feeling as if you can't be yourself.
I felt like a freaky fun house mirror version of myself when I was very ill. Nothing came out right.
Anyway, stay strong. You are not alone. You will find a lot of support on this bulleting board. As you receive the proper treatment and care and steadily get better, a lot of the neuropsychiatric symptoms will get better and disappear.
Have faith, and try not to let the opinions and attitudes of others close to you get you down. Their attitudes and opinions and treatment of you are based on ignorance.
Some of these people will come around, many won't, but you have to stay strong and be persistent about getting treatment and getting better, for yourself and for your children.
Farah
Posts: 208 | From New Mexico | Registered: Dec 2005
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Greetings from Louisiana. I recently have been diagnosed with Lyme's disease after two specialist MD's sent me home on anti-anxiety and anti-depression medicine. I have felt like I am in a perpetual state of SEVERE PMS!!!!!!! I have a 5 yr old and a 3 yr old as well. My husband didn' t and doesn't understand how I feel...physically, mentally or emotionally. He thought that I was creating a medical problem by worrying about what was happening in my body. My mom says that if I would wake up with a positive attitude, I would feel better. I really understand how you feel and that no one else does. I pray a great deal and this helps. Also sharing with others who feel exactly like I do helps too. Will pray for your journey towards feeling better. Hang in there...You are a Mom....you know you don't get any time off to be unwell. (I know I don't in my house)
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
POOEY....the links aren't working....here's the real deal:
========================================== 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 person's 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 relative's 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 don't 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 don't want to hear the truth" or "your losses don't 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 you're 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 don't believe you, because you look fine to me." Instead try, "I am so glad to see you," "wow, I can't 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.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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I am a newbie to this board, too. The frustration is just awful, ins't it? Some days you wonder where your "tru self" as gone.
I have had lyme for over a year, but forunately got bit again in June, so was finally treated.
I will tell you what really helped me. I read through as much info as I could from this site, took lots of notes, and made lots of reminders on how I was going to beat this disease. And these last two weeks have been so much better.
There was a quote from I think Betty G that helped me a lot:
"Cut yourself some slack. Remember that you are ill and just because you didn't do whatever, you are not lazy, dumb, etc. Don't define yourself by the illness."
And (I know this is hard) REST, REST, REST. I tried to push myself all summer and since I have begun taking regular naps, I have been giving my body time to fight the bugs and am doing better and my days are getting a little longer.
All the best to you. Hang in there.
Posts: 15 | From Rhode Island | Registered: Oct 2006
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posted
Thanks a bunch for the info!!! The article is really great.
I am still so ignorant to all of this, I do have a doctor who seems to really be supportive of the disease, after talking with her for only 10 minutes she was sure I had LYME and sent me bloodwork that day to IGeneX.
So all in all I am lucky to have found a doctor who listened and didn't just write a prescription for an antidepressant like the rest of them.
But now I have to start researching, to figure out what all I need to be doing to get well.
The rest thing is the hardest, with three kids and a husband who travels, and I work full-time.... needless to say, I don't get enough rest and I can feel the effects of it.
I am still in the denial stage I think, I keep telling myself that I should be able to handle this and there are sicker people than me.
I know I need to really give myself a break, I am trying.
Like I said, I am happy I found this site, hearing other people talk about stuff I can totally relate to is so nice.
It is nice to know I am not alone! Thanks to everyone!
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