Last Modified 10/29/2011 04:36:07 PM ET
Table of Contents
- The TBI Patient Experience
- The LymeSpouse Experience
- LymeSpouse Guidance Considerations
- Change Log
- Contribute to the LymeSpouse Protocol
This is not a medical protocol. It's not written by a medical professional, a professional psychologist, or a social worker. It's a document based on the experience of the website creator, combined with the insights of many people tasked with caring for a loved one with a TBI.
This is a "living document," and if you are a LymeSpouse, then you should return on a regular basis to see if anything has changed. The Change Log for this document will be updated each time there are modifications, to summarize and help you find the new material.
If you are experiencing feelings of extreme hopelessness, to the point where you are considering hurting yourself or others, do not rely on this document alone; seek help from a professional or contact 911 immediately. You absolutely are NOT alone, and you need only make your voice heard to get the help you need!
What Is A Protocol?
In the medical community, a protocol is a set of guidelines for making decisions and establishing criteria regarding diagnosis, management, and treatment. This protocol document is meant to offer some guidelines towards the wellbeing of a LymeSpouse. Just as there are many different protocols for the treatment of TBIs (some good, and some very, very bad), I have proposed that it is essential to create a protocol, or set of guidelines, for use by LymeSpouses to help them in their daily struggles to help their infected loved ones. In short, how to care for the caregiver and the family as a whole.
The TBI Patient Experience
There is scarcely anything more frustrating and varied than the symptoms that a TBI sufferer must bear. The variety and severity of these symptoms make the overall experience for the sufferer incredibly debilitating and soul-crushing. Every TBI-sufferer has a different experience, and it would be impossible to describe each and every possible symptom or result of infection in this document. However, because our goal is to guide a LymeSpouse towards better understanding of what TBIs are all about, we'll outline as many different aspects of TBI infection here.
Physical and Cognitive Symptoms
The list of symptoms can vary depending on what "stage" the infection is currently being experienced. "Early Localized Disease" usually presents with flu-like symptoms and sometimes (and ONLY sometimes!!) an expanding bulls-eye rash. Chances are, if you're reading this, the infected person has moved on to the much-disputed "chronic" stages of infection, either "Early Disseminated Disease" or "Late Disease". These are by far the most challenging stages, and the symptoms may include, but are certainly not limited to:
- General Pain. Generally speaking, this is the same kind of pain that leads ignorant doctors to presume "Fibromyalgia" or "MS" or "Lupus." The pain can be anywhere, literally anywhere, and of varying degrees of severity. This includes headaches as well. It is very generalized, and can actually change or migrate each and every day, sometimes by the hour. This pain may or may not resolve with various pain medications.
- Acute Pain. These are specific pain sensations, often described as "ice picks" in the joints or muscles, are short- or long-lived, and again, of varying degrees of severity. Like the General Pain, this type of pain can move around, disappear and reappear, and may or may not resolve with various pain medications.
- Parasthesias. Strange sensations, anywhere in the body. Some have described it as always feeling like an electric current is running through the body; others, as if something is crawling on the skin. Some may feel as though something is "stuck" to their skin. The descriptions can go on forever; the point is, these are odd, unusual, distracting and often very frustrating sensations caused by something that "isn't really there."
- Paralysis. This is a fairly acute symptom, most often presenting as Bell's Palsy. Some TBI sufferers actually long for this symptom, as it would validate their infection for them. However, like all the other symptoms, this one is very much optional.
- Sleep Disturbances. Night sweating, chills, interrupted sleep. No matter how quiet the room, no matter how tired one is. May also present as vivid dreams.
- Fatigue. We're not talking about the "I stayed up late, and had to get up early for work" type of fatigue. Nor is this even the "I'm sick and need to stay in bed" type of fatigue. This is numbing, debilitating, persistent, if-I-move-I-get-even-more-tired complete energy drain from the body. All one can think about is how soon they can get back into their bed and sleep. Yet this fatigue is not necessarily caused by the sleep disturbances mentioned prior.
- Brain "Fog" or Confusion. A loss for words; the constant sense that you are disconnected from the world around you (depersonalization); experiences of forgetting why you walked into a room, or forgetting what your point was, mid-sentence.
- Anxiety and/or Depression. Experienced by even the most positive personalities; may be the result of the infection itself OR a reaction to the symptoms one must bear as someone infected with a TBI.
The Effects Of TBI Symptoms
Because of the physical and cognitive symptoms of their TBI, your loved one may now be fighting a battle on several fronts:
- Physical. The symptom list above is changing, growing, and never ending. Each day that a TBI sufferer wakes up, it's likely that the first thing on their mind is "Well... What's it going to be today?" They physically cannot do the things they used to do, for work OR for pleasure. Sexual encounters are painful and unfulfilling, often out of the question altogether,and even just a gentle embrace from a loved one causes discomfort. No matter how rested they may be, their body is working very much against them. Willpower and desire cannot always overcome this type of physical pain, no matter how much "encouragement" a sufferer is offered. Small tasks often seem incredibly overwhelming. The unknown and unpredictable nature of the symptoms leave the sufferer stranded in their own body, with no immediate hope for relief.
Emotional. Because of the physical manifestation of the disease, and the unpredictability of it all, the
TBI sufferer slowly begins to suffer a true roller-coaster of emotional issues:
- Loss of Self. They can no longer do the things that made them "who they are." A mother can no longer care for her children the way she desperately wants. An avid gardener's plot becomes overgrown with weeds. A musician's instrument gathers dust in the corner.
Loss of Self-Esteem. Feelings of uselessness permeate their thoughts. A TBI sufferer feels they are a burden
on their family; they are a "downer" to their friends and unable to participate in society. Life goes on around them,
and they can no longer participate. They are merely a distant, exhausted, pain-riddled observer.
Further, the disease may be taking a toll on their physical appearance. Hair loss, weight gain, skin conditions and even just the inability to groom oneself as in the past, all a result of the disease, can erode feelings of worth and confidence over a surprisingly short period of time.
- Anger. A long-term sufferer of a TBI is at times simply very angry. Angry that so much has been taken away. Angry that nobody understands. Angry because they've heard, so many times, "But You Don't Look Sick." Angry because someone left some crumbs on the kitchen counter. Angry for any number of other things, reasonable and rational, or otherwise. Sometimes this anger may be induced directly by the disease; other times, it's the result of endless frustration with the entire experience. Holding in the anger that they themselves know is not always rational, and certainly not the fault of those around them, drains energy from the TBI patient.
- Guilt. Feelings of guilt because they cannot do for others what they used to be able to do, especially in caring for the family. A mother feels guilt when she cannot attend a child's school function; a husband feels guilt that he cannot help is wife with the housework, or even keep a regular job because of the debilitating physical symptoms. One will feel guilt for not having the energy to even show appreciation to those around them, that may be helping them, because the ONLY thing on their minds is "how am I going to survive this?" or "how soon can I go back to bed?" or just "what is wrong with me?"
- Numbness. Simply going through the motions of daily life; emotionally distant from others, and so tired of the emotional roller-coaster, and needing as much energy as possible just to fight the physical symptoms, that the emotions simply "turn off," sometimes for days or more at a time.
- Loneliness. Being bedridden, or simply being alone in the house while the world has continued on, can quickly cause the TBI sufferer to feel lonely, even abandoned. If the LymeSpouse has not received care and guidance, they may have begun to distance themselves from their loved-one, as an unintended reaction to the overall illness, or as a result of the actions of the sufferer.
- Loss of Mental Stability. Because of what their body is experiencing, a TBI sufferer is scared. They are worried about what is to become of them, about whether the rest of their lives (which may span many decades) will be spent dealing with the physical and emotional issues they are experiencing. The brain-fog that is often associated with TBIs alone can make one feel as though they are going insane, let alone all the other emotions covered here. It is not unusual for one in this condition to consider "ending it all" -- not for attention, not to act out, but merely to find relief.
- Medical. The war against the medical community takes as much an emotional toll as the physical symptoms. The present condition of Lyme- and TBI-related care is a complete disgrace. (You may wish to read more about the war within the TBI medical community.) The myriad doctors appointments -- and the feelings of hope that are dashed with each visit, as the patient is told "this is all in your head" or "the tests show there's nothing wrong" or "let's refer you to yet another specialist" -- wear the patient down even further. The very community that your loved one is supposed to rely upon to make them well is very quick to turn them away with misdiagnoses, cold and uncaring comments, and matter-of-fact dismissal. It is the medical community's job to recognize and sustain the TBI patient with a goal of curing the disease, and unfortunately, right now, they are failing miserably.
The above is truly a core component of this document; these effects take their toll not only on the patient, but on their LymeSpouse and their entire family and network of friends, who are neither prepared for them, nor even fully aware of what is happening.
The LymeSpouse Experience
Your experience as a LymeSpouse will vary based on your actual role. Much of this document assumes that you are in fact the husband or wife of the infected person, but of course that's not always the case. Our hope is that this document will cover as much ground as possible, for as many people as possible.
Summing up the experience as a LymeSpouse is almost as difficult as summarizing the experience of the infected person. There are many variables, not the least of which is the LymeSpouses own personality. But if you review the Effects of TBI Symptoms section above -- surprise! -- you may find that many of those effects also apply to YOU as a LymeSpouse:
- Physical. No, you're not feeling the actual pain associated with your loved one's TBI. Rather, you may become physically drained from trying to provide care; your physical being may be suffering as a result of poor diet (fast food decisions due to time constraints) or lack of exercise (loss of will, time, or energy). You may even be feeling the physical frustration of the complete and abrupt absence of the sexual relationship with your loved one that you once had (this may be especially true for men). While not as pronounced as what your loved one is going through, the physical toll upon you must be acknowledged.
Emotional. As an LymeSpouse, you too are on an emotional roller-coaster:
- Loss of Self. Over time, you too have lost the ability to do the things that make you "who you are." You are busy and focused on taking care of your loved one, and your own interests may have quickly become a much lower priority.
Loss of Self-Esteem. Feelings of helplessness permeate your thoughts. A LymeSpouse sometimes feels they are a burden
on their infected loved one; they are a "downer" to their friends and perhaps unable to participate in society.
Life goes on around them, and they may no longer participate, due to obligations towards the infected loved one.
Further, if the physical effects mentioned earlier have become realty for the LymeSpouse this can erode feelings of worth and confidence over a surprisingly short period of time.
- Anger. The LymeSpouse is certainly angry at times. Angry at their loved one because they are no longer the person they used to be. Angry perhaps because they do not even fully understand the condition their sick loved one is in. Angry because it seems the car is always on empty, the batteries are always low in the cell phones, the kitchen is always a mess, and nobody, nobody seems willing to help. Nobody even seems to understand. Angry because no matter how much physical or emotional pain they may be experiencing, the pain their loved one is experiencing always seem to trump them. And angry because it seems the situation is always getting worse, with no hope in sight.
- Guilt. The LymeSpouse will feel guilty because they got angry; because they decided to go to that party alone, leaving their sick loved one behind; because they couldn't find the energy to take on the additional household tasks that their loved one used to do; because even when they are with their children, all they can do is think about the desperation and dismal hopelessness of their situation; because they have so much trouble remaining positive when everything just seems to be falling apart. You may be feeling guilty for momentarily entertaining thoughts of having an affair, to satisfy your physical and emotional needs, which are no longer being met. You may be feeling guilty because you simply doubt your loved ones symptoms; you doubt how sick they really are; or, you have that one fleeting thought that screams "Will You Please Just Get Up, Stop Being Lazy, And Do SOMETHING." It's not just simple guilt, it's a type of guilt that causes tremendous heartache when it is recognized. "How could I feel such horrible things about someone I love?"
- Numbness. Simply going through the motions of daily life; emotionally distant from others, and so tired of the emotional roller-coaster, and needing as much energy as possible just to try and do everything for themselves, their sick loved one, and their children, that the emotions simply "turn off," sometimes for days or more at a time, making them seem distant and very, very apathetic.
- Loneliness. This may be the strongest and yet least recognized emotion of all in a LymeSpouse. They don't see, or are unwilling to admit, that they miss the person that their sick loved one used to be. They miss the physical relationship, the emotional and cerebral interaction. A LymeSpouse may even wallow in this loneliness, going out in public to eat alone, in the hopes that someone, anyone will talk to them and ask them how they are doing, and really want to talk about the actual answer to that question.
- Loss of Mental Stability. The gamut of emotions, the hopelessness of the situation, and the daily struggle to try and "hold it all together" take their toll. It becomes more difficult to make even the simplest of decisions, which furthers the feelings of anger, frustration, guilt, and numbness. It is not unusual for one in this condition to consider "ending it all" -- not for attention, not to act out, but merely to find relief. In this case, "ending it all" may mean the relationship, or it may very well mean ending their very lives.
Medical. If the LymeSpouse is active in the medical care and experience of their loved one (which is highly
recommended), the war against the medical community takes as much an emotional toll as all the other issues. Because of
the medical community's "treatment" (or lack thereof) of TBI patients, the LymeSpouse is left feeling VERY hopeless, always
struggling to try and do more, learn more, and even left hoping to stumble upon that one doctor, that one "Gregory House, MD",
that will take a true interest in their loved one, do all they can, and administer that magic treatment protocol that ""gives
everyone their lives back."
When the LymeSpouse discovers there's a difference between a "regular doctor" and one that is "Lyme Literate," the frustration and energy expended to try and get their loved one the help they need, and the out-of-pocket expenses that go with such endeavors, grows almost exponentially. With each and every brick wall that is encountered, it can feel like another failure, another way in which the LymeSpouse is simply helpless. The pressure to find a "cure" is immense, as soon as the LymeSpouse discovers that the longer the loved one goes without treatment, the harder they become to treat.
The LymeSpouse experience can be a vicious cycle of emotions, where guilt, loneliness, and loss of self cause you to be angry, which makes you feel more guilt, the cycle of which causes you to grow more numb, more distant. You suddenly realize one day that this is "Not Who You Are," or your loved one lashes out because you've become a different person, and you become angry all over again that you didn't recognize the situation for what it is, or you lash out right back. Later, this causes even more guilt, more confusion, and more feelings of helplessness and hopelessness. And so it goes.
LymeSpouse Guidance Considerations
Our goal is to establish some helpful guidelines based on the issues being experienced by both the sick loved one and the LymeSpouse -- guidelines meant to recognize and sustain the LymeSpouse, so as to help the sick loved one, and preserve the relationships, the family unit, and the network of friends.
Why Guidance "Considerations?" Because just like any good protocol, it is important to remember that not all methods within this protocol apply to each individual case. These are all items for you as a LymeSpouse to consider, if they do in fact apply to you.
Go back and re-read the entire "TBI Patient Experience" section of this document.
If this is the section you've been waiting to read, or if you jumped right to this section without reading the rest of this protocol, you may be somewhat disappointed by this first guideline. Why? Because you're being asked to go back over previous sections, material you probably believe you already "know," and that's not necessarily fun. But in order to write guidelines to help recognize and sustain the LymeSpouse, the LymeSpouse must first fully recognize the condition of their loved one.
So, go back and read about your loved one's condition. You must do this. But this time, when you read it, force yourself to imagine that it were you going through what your loved one is going through. Substitute yourself as you read each and every symptom.
Often we may read, or even hear to our loved ones try to describe, the symptoms of their TBI. We hear, but we don't really listen. We don't internalize, we don't substitute ourselves into the same situation. We might not even truly believe what we are hearing. After all, it doesn't seem POSSIBLE that your loved one could sleep all night, spend the entire day on the couch (if they made it that far), only to tell you how completely exhausted they are. During your second read-through, consider the true nature of the disease, and how you would feel and react were it you in that condition. Recognize the condition your loved one is in, so that you can find ways to sustain them through their difficult experiences.
Believe what your loved one is telling you.
You've followed the first guideline, and perhaps dried a few tears taking it all in from your new perspective. Based on this, you must now recognize how much your loved one needs your absolute trust.
Believe every word they use to describe their experience. Believe that these experiences are real, that they are not trying to "put one over on you" (or the world), that they are not lazy, they are not crazy. Trust in them, and do not doubt them again. Do this no matter how difficult the LymeSpouse experience becomes.
"Believe in your loved one." This sounds rather easy taken as a simple statement, but it's not. Not with Lyme Disease. Why? Because Lyme Disease itself in an exercise in faith:
There are no accurate tests. Consider you and your loved one lucky if you in fact did receive a positive test. Consider
yourselves luckier if the physician takes a positive result and actually acts accordingly. Consider yourself a lottery
winner if your physician is Lyme Literate and understands what "treatment" for TBIs actually means. But consider this most
of all: Many many people have tested negative for TBIs, until well after they started a proper treatment protocol.
Some never test positive at all, yet their conditions are recongnized and fully resolved through proper treatment by a
Lyme Literate MD.
You must believe your loved one's condition is real, because the tests do not.
There are no hard and fast cures. The medical, pharmaceutical and insurance communities would have you
believe that a magic 21-day dose of an antibiotic, no matter WHAT stage of the disease you are in, is the cure. They practically
demand that you believe this, even though clinical and laboratory research have suggested that the spirochete is polymorphic,
capable of becoming a "cyst" and surviving an initial course of antibiotcs only to present and further infect the host later.
You must believe your loved one's condition is real, because the medical boards, insurance companies, and drug companies do not.
Among the "medical professionals" there is denial that a chronic condition is possible.
The medical community wants you to believe THEM, not your loved one, not even yourself. They will insist
that "Lyme Disease doesn't exist in your geographic area", that there is "no such thing as 'Chronic Lyme'", that when your
loved one was given their magic 21-days of antibiotic, they were "cured," that nothing can survive a course of antibiotics.
They will present you with the negative results from admittedly inaccurate tests; they will treat the tests and not the
patient. They will then "highly recommend" that your loved one consider seeing a psychologist to determine why they are
still feeling so much pain, why they are so "depressed", and will prescribe medications for depression accordingly. They
will assign incurable, unverifiable diseases like "Fibromyalgia" or "Chronic Fatigue Syndrome" to the condition, and send
you to rheumatologists to confirm, or send you home to "get some rest." Because they are the professionals with the degrees
and perhaps a vast amount of experience in their field, you will be tempted to believe them.
You must believe your loved one's condition is real, because the physicians do not.
In summary, believing your loved one has a TBI means believing in something that according to all current diagnostics, is simply "not there" or "can't be possible" most of the time. If the medical community, the pharmaceutical industry, and the insurance industry all refuse to believe in your loved one, who will?
There is actually an immediate benefit to the LymeSpouse in resigning to this faith in the untreated/mistreated TBI-infected loved one, in believing that yes, they really ARE suffering, there really IS something very wrong. That benefit is simple: You no longer have to have this dark question of uncertaintly clouding your judgement. You can move forward, with confidence, and no longer lose focus. You can invest time helping your loved one, knowing that you are not "enabling" certain abberant behavior, that you are not being "scammed," that you both are experiencing something very real - something which can bind you together in a way you never imagined. And if nothing else, you no longer have to feel guilty about questioning your loved one -- because you believe, truly believe, that they are ill and in need of real help.
You may find yourself surprised that you didn't believe in your loved one's condition like you thought you did.
If you've gotten this far, you may feel a tremendous amount of guilt, for some of your behavior as a LymeSpouse. You may be starting to realize that you haven't full understood how serious your situation is, how sick your loved one is, or the battle that lies ahead. You may be starting to realize that your gut reactions and your attitude towards your loved one, your family, and your friends is not at all what you would have wanted.
Remember, TBI does not come with an instruction manual, for anyone. If you've made some mistakes during this experience, it's time to make note of them (you may want to refer back to them later), forgive yourself for them, and prepare to move forward. Reacting poorly to something you don't fully understand is a very human thing, and does not make you a bad person. Where you go from here is what matters most.
Talk to your sick loved one.
Now would be a good time to discuss this protocol with your sick loved one; let them know how you feel, and that you are willing to work towards being a better LymeSpouse and share this experience together. Whether you were brought here as a result of a relationship breakdown with your loved one already, or if you were simply looking for support from others in your situation, your loved one may feel reassured that you are working to be "on their team" and that your relationship is important to you. Be willing to discuss any area of this protocol with them, communicate what you both need. Brainstorm way to make this experience easier for you both and your family. If this one page can open up communications in a new way, and allow you to move forward together, take advantage of that possibility as soon as possible.
Protect your children at all costs.
When going through the emotional roller-coaster as a LymeSpouse, it's easy to get so wrapped up in the experience that you begin taking it out on the people that frustrate you the most, and understand the least: Your children. Take stock, right now, of your experience with your children. How are you talking to them? What are they being exposed to, if/when they see you at your worst? When they've misbehaved, are you acting disproportionately angry? Are you saying or doing things to your children that you never dreamed you'd be saying or doing? That, as an outside observer, you'd say "That just isn't ME..."
If they are younger, shield them as much as possible from the emotional pain that you and your loved one are going through. If they are older, talk with them as much as possible about the experience -- they'll have their own list, just as you do, above -- and work together to ensure that everyone feels supported and loved. Make clear what help you need from them, and seek help for your children if necessary.
Start treating your LymeSpouse symptoms.
With most diseases, the goal is to treat the patient and cure the disease, not simply treat the symptoms. In the case of the LymeSpouse, the only thing you can do is treat your symptoms, because an actual "cure" involves the proper treatment and cure of your loved one, not you. You won't be able to stabilize your relationship and help your loved one if you are suffering all of the symptoms of an "untreated" LymeSpouse; rather, you'll be unable to think clearly, and unable to act in the best interests of your loved one and your family.
[A point by point "treatment" plan for the "symptoms" a LymeSpouse experiences will be created here shortly.]
As mentioned before, this is not a medical protocol. It is a living document, that we hope will continue to grow, become more accurate and useful over time, and be the source of assistance for many people who care for those with a TBI.
10/29/2011 - 12:48pm: Initial LymeSpouse Protocol Document Published Online.
Contribute to the LymeSpouse Protocol
The LymeSpouse Protocol was originally created through one person's experience as a LymeSpouse. We expect the protocol to be expanded and modified by the LymeSpouse community. This can be accomplished via the LymeSpouse Protocol Discussion Forum or through independent, private suggestions made via our LymeSpouse Contact Form. Whether you are a LymeSpouse, a TBI sufferer, or simply someone with experience with the suffering, treatment and emotional dynamics associated with tick-borne disease, we welcome your suggestions, corrections and insight.