Self-image With Undiagnosed Illness? How To Rebuild Image When You Can't Do Anything?

Self image with undiagnosed illness? 

How to rebuild image when you can't do anything?

Last week I asked the members of our Periodic Paralysis Network Support Group to name a few ideas that they would like to have me write some new blog articles about, related to Periodic Paralysis (PP). One member asked me to write about ‘self-image with undiagnosed illness' and ‘how to rebuild self-image when one cannot do anything?’ I needed to think about this for a while, because I myself have struggled with these issues, especially as my own condition continues to decline. I also continue to struggle, even now, with my own self-image nearly a decade after receiving my diagnosis for Andersen-Tawil Syndrome (ATS). The timing on this was more than coincidental, however, because I just finished reading a book that was given to me as a gift that holds some answers to these questions and I will discuss it in this article. I have done some research on this as well and hope the ideas I have come up with may be helpful to my fellow Periodic Paralysis sufferers and myself.

The Oxford Dictionary describes ‘self-image' as “the idea one has of one's abilities, appearance, and personality." The example it uses for how to use the term is: "Sickness is an affront to one's self-image and dignity." Those words are very true for anyone who is sick with any illness, medical disease or condition, but they are especially poignant for those of us with Periodic Paralysis. PP is an especially cruel and rare mineral metabolic disorder that is difficult to diagnose and understand and most often mistaken for mental illness (It is the “all in your head syndrome”). Diagnosing is not straightforward. It can take an average of 20 years (my own took over 50 years) because diagnosing PP is exclusionary; which means it is arrived at after all else is ruled out by testing for other conditions. Testing will always come back negative. If someone does not know they have PP and doctors do not recognize it, this is especially difficult to deal with.

PP is not a neurological condition but we are sent to neurologists because the symptoms look neurological. They give us drugs to treat our symptoms. The drugs, in turn, cause new or worse symptoms. Then we receive diagnoses for things we do not have and cycle of 'diagnosing insanity’ continues until they harm or kill us or we are lucky enough to find a doctor who understands. Many of us have had to diagnose our self and then set out to get a diagnosis. At this point we look even more mentally ill to the arrogant doctors who do not understand or care enough to try to figure it out with and for us.

Through all of this we get sicker, weaker, our muscle weakness progresses, we develop exercise intolerance and much more...all with no diagnosis. Our family members do not believe us they think we are faking. (If the doctors do not believe us why should anyone else?) We lose friends, some of us lose our marriages, employment or an education becomes more difficult and some of us must give up our careers…all with no real answers and no diagnoses. Who would not have a poor self-image of themselves while they are going through decades of illness, not being believed and tremendous loss???

A large majority of us who then finally do get a diagnosis are classified as to whether the diagnosis is ‘clinical,' which is based on the symptoms or ‘genetic’ based on DNA testing results. This is a new set of problems that really takes us even lower. We are discriminated against in the PP community. Just 9 years ago, I was looked down on for not having a diagnosis and then actually scoffed at me when I finally got my clinical diagnosis because I had ‘only' a clinical diagnosis for ATS based on my symptoms. Those with genetic diagnoses and the support group that was available at that time only allowed those with a diagnosis to join their group, but believe me, they wanted it to be a genetic diagnosis. I got no help and could get no answers for my serious questions. (This is why PPN now exists. We are here for everyone and especially to help with getting diagnoses and helping everyone naturally, not pushing the drugs, which are harmful to many of us.)

Many, regardless of a diagnosis or not, are still shunned by family members who do not understand, medical professionals who have never heard of Periodic Paralysis, co-workers, teachers, friends, neighbors. We are mistreated by doctors who do not understand and so much more. All that being said, it is not difficult to understand that those of us with symptoms of Periodic Paralysis whether diagnosed or not, have issues with our self-image or how we see ourselves. I am one of those people!

While I was researching this subject I found a really simple but informative article written in Psychology Today by Katie Willard Virant MSW, JD, LCSW published on August 10, 2018. It is entitled Self-compassion in Chronic Illness: A Dose of kindness for improved health. The author discusses three important components that make up ‘self-compassion,' which can be used to help us rebuild a positive self-view of ourselves.

They are: self-kindness, common humanity and mindfulness.

The three components of self-compassion:

Self-kindness

When we are chronically ill, we tend to be negative and use self-blame and self-criticism often. We did not make ourselves sick nor is it our fault that we cannot do things that others can or that others think we should be able to do. We may even think of ourselves as ‘stupid’ or lazy at times. Instead we need to change the self-dialog and treat ourselves with acceptance and understanding. It will not come easily, but with practice we can begin to feel better about ourselves.

Common Humanity

We need to remember that we are not alone in our suffering. Others are going through the same things we are experiencing. Others also have Periodic Paralysis. Our journeys are much the same. Painful experiences are a part of everyone’s lives.

Mindfulness
We need to take a balanced look at our emotional negative states, rather than becoming caught up in them. However, we should not ignore or deny the feelings, instead we need to notice and look at them, but not get immersed in them. For instance if we feel sad or angry, we can feel it and recognize it and then let it go. We should not feel guilty for having the feelings.

You can read more details in the article below.

From Psychology Today

Self-compassion in Chronic Illness

https://www.psychologytoday.com/us/blog/chronically-me/201808/self-compassion-in-chronic-illness

Seeking advice on this subject from my daughter who is a therapist, she suggested a self-help workbook that may be helpful. It is titled, Get Out of Your Mind & Into Your Life by Steven C Hayes, PHD. The cover explains “You can learn step-by-step how mindfulness and acceptance can help you: overcome depression, transform emotional pain, free yourself from negative thinking and self-judgment, commit to what you care about and live a life you value.” It teaches how to use the new Acceptance and Commitment Therapy; how to repair our mind after it has turned on us.

As I mentioned in the opening paragraph I received a truly remarkable book for Christmas and just finished reading it last night as I was contemplating writing this article. I want to mention it here because I think it may be helpful in rebuilding ones self-image. It is Man’s Search For Meaning written by Viktor E, Frankl, a Holocaust survivor and the creator of Lgotherapy.  It has helped me tremendously in how I look at my life with chronic illness, which has caused me great loss. It is one man’s story about how he found meaning in every moment of his life despite losing everything including every member of his family and suffering in unimaginable and heartbreaking ways. It was inspiring and filled with ideas of how to change our way of thinking about, and looking at, our life. One of his important quotes in the book is “suffering is not necessary to find meaning, only that meaning is possible in spite of suffering.”

Another thing we must have in order to re-build and maintain our own self-image is to awaken each day with HOPE. That can be very understandably difficult for us.

What is hope? According to Longman Dictionary of Contemporary English ¹ hope is “a feeling of wanting something to happen or be true and believing that it is possible or likely.” Another dictionary states hope is a "feel[ing] that something desired may happen". Hope is a sense or desire that things will turn out for the best. The word hope may be used as a noun or a verb. ²

In terms of my life with Periodic Paralysis, many doctors, including the specialists, have told me that there is nothing they can do for me. I can take no medications, have no surgeries and I am in a gradually declining physical state. I would be dead now if it were not for my husband, Calvin’s research and fight for the things that now keep me alive and were giving me a better quality of life. He found that preparing and feeding me a pH balanced diet with needed supplements, providing me with oxygen therapy, helping me to discover and avoid my triggers, sheltering me from stress, keeping me hydrated, monitoring my vitals and remaining optimistic brought me back from the brink of death and reduced my paralytic episodes from four or five full body attacks a day lasting several hours at a time to one or two less severe episodes a year!

He had hope. He had a desire that things would turn out for the best. He was correct in what he did and how he did it and was optimistic that I would get better. He maintained hope that I would improve in all ways and the truth is that I did. Since that time, because of his hope and optimism, which I now share, we wrote and published, four books about Periodic Paralysis and maintain our PPNI Forum and our Blog. We share all that we have learned to help others with PP.

I post something about HOPE each day in the Support Group as a reminder to each of us. Please do not give up HOPE.

The final ingredient I have chosen to discuss, which I believe can help us to rebuild and maintain our self-image is about having something to look forward to. No matter how large or small it may be, we must look to the future. I have little to look forward to each day as I sit in my recliner, but I find little things. For instance right now, as I look out my windows I see our beautiful but bare forest. Although it is slightly above freezing, the sun is shining. I am hopeful that spring will soon be here with warmer temperatures and blossoms and leaves on the trees and bushes. It will be warmer and I am looking forward to getting in my power wheelchair and going for a “walk“ down our road. We have no family that lives near us so I am also looking forward to some of my family members possibly visiting later this year.

I hope I have presented some ideas that may be helpful for each of us to rebuild or repair our self-image and enjoy each day.

Until later…

References:

Oxford Dictionary

the idea one has of one's abilities, appearance, and personality.

"sickness is an affront to one's self-image and dignity"

Wikipedia
Self-image is the mental picture, generally of a kind that is quite resistant to change, that depicts not only details that are potentially available to objective investigation by others (height, weight, hair color, etc.), but also items that have been learned by persons about themselves, either from personal experiences or by internalizing the judgments of others.

Self-image may consist of four types:

1.    Self-image resulting from how an individual sees oneself.

2.    Self-image resulting from how others see the individual.

3.    Self-image resulting from how the individual perceives others see them.

4.    Self-image resulting from how the individual perceives the individual sees oneself.

These four types may or may not be an accurate representation of the person. All, some, or none of them may be true.

https://en.wikipedia.org/wiki/Self-image

What is Self-image and How Do We Improve It?

https://positivepsychology.com/self-image/

From Psychology Today

Self-compassion in Chronic Illness

https://www.psychologytoday.com/us/blog/chronically-me/201808/self-compassion-in-chronic-illness

Finding or Holding Down a Job With Periodic Paralysis??

Finding or Holding Down a Job With Periodic Paralysis??

I was asked to write a blog article about jobs suitable for those of us with Periodic Paralysis (PP). As I contemplate this issue, I know that there is more than one answer and many things to consider. 

Periodic Paralysis is a mineral metabolic disorder with varying degrees of symptoms depending upon the form of PP that one has and the stage of PP that one is in at any given time and any other medical conditions that may be coexisting with PP. Important to also consider is the degree with which one’s symptoms are being controlled.  Periodic Paralysis is a progressive disease, so most people will get worse or at least weaker over time and this must be factored in as well.

The symptoms of PP are not stable; they change over time depending on the trigger or triggers we may be exposed to in any situation. The triggers can and do change. For instance, sometimes a food we eat may send us into full-body paralysis, but at other times it may not. There can be a delayed reaction to a trigger, so we may be fine today after exercising, but when we wake up the following morning we may not be able to move. We may have eaten a high carbohydrate dinner the night before and it may cause symptoms the next afternoon.

Periodic Paralysis is unpredictable and must be factored into any type of job or career we may be planning on seeking or studying for in the future.

Our age must be considered as well. Some of us do not develop severe symptoms until we are older, but some of us have symptoms beginning as children. This being said, are we able to attend college or a trade school? Maybe we can do that now, as any other normal people can, but will we be able to hold down a job or a career that we are seeking when we finally compete our studies? Will a trade we want to learn, like mechanics, be something we can do in five years?

Will you be able to find a company with management that will be able to work with you to accommodate your needs such as, coming in to work late some days or the need to leave early, or maybe resting in the middle of the day? Missing several days in a row? Will they allow you to work from home?

There is so much to consider.

In my case, I had symptoms very early in life, but did not know I had Periodic Paralysis until I was 60, much later in life, but I was deemed totally disabled at the age of 50 for other reasons which we now know were the PP. I had four children and raised them without much difficulty, though there was always a medical issue or problem with keeping up, etc. My symptoms got worse with each passing year. However, I did push my way through college (started at 34) and working and raising my family until I graduated with two degrees, Special Education and Psychology, a month after turning 40!

I was able to teach for nearly 10 years, but each year got harder and more difficult. I got weaker and more and more symptoms developed. I was given drugs for the symptoms, which made me worse. I finally had to retire half way through my 9^th year of teaching. I had to fight for disability, which I did not get for three more years. They finally approved my date of disability as the last day I was able to teach, three years earlier.

I continued to go downhill in all ways… I first needed a cane, then a self-propelling wheelchair and then finally a power wheelchair. I was put on oxygen and spent, and still spend, most all of my time in a recliner due to permanent muscle weakness (PMW) and exercise intolerance.

However, all of that being said, I have been able to do many things right from my recliner. I have the world at my fingertips. I created the Periodic Paralysis Network Forum. I have written and published six books. In the early years of PPN, I was spending most of my waking hours on-line in real time working on the support group and writing.

Another story I can tell you is about one of my daughters. She started college late like I did and has been sick like I was as she worked full time and went to school. It took her 16 years. Some of her work was done on the computer from home. By the time she finally graduated with two Masters Degrees (Psychology) and a Bachelors Degree, she has become even more ill. She tried working full-time jobs as a therapist for a few companies but had a great deal of difficulty keeping up. She missed many days and finally gave up. She has, however, found that she can work from home, as a therapist for a company that does all of their therapy on-line. She can make her own hours; rest as much as she needs, eat better, does not have to drive anywhere and much more. She is thriving now and making nearly the same as her salaried jobs.

Why did I tell you these stories? I wanted to let you know that there are things you can do for employment, despite having Periodic Paralysis. However, there are many things to consider before you move ahead with your plans, because there are many things you may not be able to do, at least in the way others do or what you may want to do.

I wanted to be a teacher working with special needs children. I was able to do it but for only a few years. As disappointing as that was for me I realize that I am still a teacher and still working with individuals with special needs. I am still able to use my psychology and writing skills. As small as the impact may be, I am making a difference in other people’s lives and I feel satisfaction in that.

So, considering all of the things discussed above; what do you want to do? What are you good at? What special skills do you have? What are your limitations or what might they be in the future? Will you need to go to college, trade school or obtain special training? Will you be able to manage the training? Can you create a plan to look for the job you think you can do or find the training you need to do it? Is there help available? Can you do the college work or training on-line?

More and more jobs are being done at home. My son-in-law works from home everyday in IT. He must stay home to help my other daughter who has severe medical issues from PP. My son works some days at the office and some days at home in communications.

All is not lost when it comes to employment and working if we have Periodic Paralysis. We must think outside of the box, however. Our desire and new technology in today’s world are making it easier to make a living from home, where we can arrange our own hours. Colleges offer degrees that can be earned from home as well. Laws are also in place to assure accommodations for individuals with disabilities.

You must decide what will work for you based on what you want to do and with the understanding of your limitations and possible limitations in the future.

Until later…..

Now over 975 Members!!

Family Dynamics and Periodic Paralysis: An overview

Family Dynamics and Periodic Paralysis: An overview

I have a family with many members who do not believe that I have a rare, hereditary, mineral metabolic disorder called Periodic Paralysis. They believe I am faking and making it up. I am severely affected by the disease and it has reduced the quality of my life, however I am more affected by having doubting family members who should be there to provide help and support to and for me. There is a huge division in my family, between the believers and the nonbelievers. I am in contact with many people who also have Periodic Paralysis whose family is much like mine.

Periodic Paralysis is a cruel disease. It is one that is difficult to diagnose, though it does not need to be. Doctors, for the most part, who do not understand it, look at patients with it as hypochondriacs, malingerers or faking it. If the doctors treat us that way, is it any wonder our families may feel the same?

Some family members stay away or are very limited in their interaction with you, because they cannot face watching your decline. They may feel helpless. Some just do not know what to do or say. Some do not care or are in denial.

Others may not understand, for whatever reason. They may not have read about it. They may misunderstand. They may be stubborn about issues such as hereditary. They may not want to know. They may not care.

Many family members are living in fear that it may begin to manifest in themselves or their children. Others actually have the symptoms but are afraid to face them. They will have to sooner or later. I will be there for them or my website with all the information they may need.

I thought perhaps when I finally got my diagnosis that I had become vindicated and validated to my family. I thought they would believe me and thank me. Except for a few members who already believed me and supported me, I was wrong. The silence remains disheartening and deafening.

The way I handle it is to provide as much information as I can to them. I have the papers with my diagnosis and am happy to share them with those that are trying to get diagnosed. I have developed a website for them and others to refer to as they have questions. I have also written four books about it mainly for them. I try to maintain communication with them, however strained it may be. I am here for them and let them know. Beyond that, I can do no more.

The loss of our families seems to be another cruel reality of Periodic Paralysis, and as one of my brothers says, “It’s just that simple!!”

(This was taken directly from my book Living With Periodic Paralysis: The Mystery Unraveled)



Until later.......

Happy 9th Anniversary PPN Feb 2, 2020

Happy 9th Anniversary 
Periodic Paralysis Network!

How I got my diagnosis 

and 

created the Periodic Paralysis Network

I am 71 years old and was diagnosed with an extremely rare, hereditary, debilitating, genetic disorder called Periodic Paralysis on February 7, 2011 at the age of 62. The form I have is a variant of Andersen-Tawil Syndrome (ATS). I was misdiagnosed for over 50 years. How could such a thing happen in today’s world with all of the modern medicine and technology? The following is my story, information about this cruel disease and how and why I control the symptoms.

I have had episodes of partial and total full-body paralysis for much of my life. Due to a series of misdiagnoses and mistreatment with improper and inappropriate medications and treatments, I have become totally and permanently disabled with weak muscles throughout my body including those involved with my vision, digestion, breathing and my heart. I must be on oxygen constantly and cannot exert myself in any way. I have had a heart loop monitor inserted in my chest to monitor the tachycardia and arrhythmia, which include life-threatening long QT interval heartbeats. I sit in a recliner for most of my day and can walk (with a walker) only from one room to another or stay on my feet only short periods of time to do simple tasks like brushing my teeth. I must use a motorized wheelchair if I leave home or need to go any distance. If I did not have the help of my husband, I would have to live in an assisted living program.

Through the past years of my physical decline, I have had to give up my career as a special education teacher, my hobbies to include hiking, walking, swimming, exercising, fishing, camping, traveling, shopping, cooking and baking. I had to sell, and move away from, a beautiful home in the mountains of Utah.  I can no longer drive. I have lost many friends, because I could not keep up with them or entertain any longer. I have lost contact with family members who did not understand or did not want to watch my decline or who thought I was a hypochondriac. I have lost the connection I once had with my grandchildren because I can no longer keep up with them or continue a meaningful relationship with them. The relationship with my husband has changed from husband and wife to caregiver and patient. Most of the over 30 doctors I had seen in those 6 years have treated me poorly and as if I were mentally ill.

I have spent several years working diligently to get a diagnosis and treatment for the ailment that cruelly stole the quality of my life. The most difficult part of this, for me, is knowing that I may not have became this seriously ill if just one of the over 30 doctors I have seen in the last 6 years in Oregon and the many years before, would have taken me seriously.

One Sunday morning after recovering from yet another full body paralytic episode, I searched once again on my computer for “periods of paralysis”. I was shocked and dismayed to read about a disease, which actually had all of the components many of my family members and I had been experiencing for so many years. Once I realized what I actually had, the struggle became even more difficult trying to convince my doctors. By this point, everything else had been ruled out, but no one wanted to diagnose me. I heard I was “too old” to have it. I was ignored. I was dismissed and told to go have a “good time” as long as I was in Portland, after driving 250 miles for the results of a muscle biopsy (The test did show myopathy (muscle disease), change in shape and size of muscle fiber but I was told it was normal). I was given lidocaine after telling my primary care physician (PCP) I could not have it during a mole biopsy. It caused an episode of paralysis but I was treated as if I were a naughty child behaving badly. I was left alone in the room in paralysis. I was in metabolic acidosis, twice in front of my PCP and sent home rather than to the hospital. My heart was in tachycardia and I could not breathe. After discovering that I was having long QT interval heartbeats on a Holter monitor (a marker for ATS), this was dismissed by my PCP, even after being told it meant I could go into cardiac arrest at any given moment. After two months, I had to request a referral to an electrocardiologist. The referral took two more weeks to get from my PCP and the insurance company.

During this time, I continued to decline as I had more and more severe total paralytic episodes. I had tachycardia and palpitations of my heart and I was having difficulty breathing. Sometimes my breathing would actually stop for a few seconds at a time. It felt like an elephant sitting on my chest. It was very frightening. Soon the difficulty of taking breaths in and out began to happen when I was not in paralysis. I found it more and more difficult to breathe. Every time I stood up, ate a meal or exerted myself in anyway, the breathing got worse and my heart would speed up until it was beating 130 to 140 beats per minute, even while I was eating.

 My husband became so concerned with the lack of caring being displayed by my PCP and our insurance company, that he walked into a medical supply company and told them what was happening and asked if they could help me to get oxygen because I could not breath. After speaking with him for a few minutes, the manager told my husband that she would give all of the information he had carried in with him, to one of the technicians and that they would see what they could do for us. She told my husband that they find it is best to get all the information together and then, “Hit them (doctors) between the eyes with the facts”.

They hooked me up with a recording oximeter. It was discovered that my oxygen saturation levels were dropping dangerously low during my episodes of paralysis and it was apparent that they were low every time I exerted myself in any way. The technician took the information to my PCP and she had no choice but to sign a referral for me to get oxygen. At that point, we began to look for another PCP and decided to change insurance companies to avoid the need for referrals.

A month or two before this point, I was in despair over trying to find a doctor who knew about Periodic Paralysis. Then on the evening news, I saw their weekly feature of offering direct calls to doctors with any medical question. I quickly picked up the phone. After a wait of only a few minutes, I was speaking with one of the physicians. I asked her if she had heard of PP or knew of any doctors who might know about it. As luck would have it, she herself had a patient with it. She gave me the name of the neurologist the patient sees.

I went to my PCP with this information and talked her into giving me yet another referral. The neurologist eventually diagnosed me with “probable” Periodic Paralysis. He wrote a letter telling my PCP that I needed to see an electrocardiologist right away. It was several months before I got the referral. He described my heart condition, by that point, as serious with no treatment, but insisted I needed to have a heart monitor implanted. He also set up a renal specialist to help diagnose what he believed was Andersen-Tawil Syndrome based on all the information being presented to him by my PCP, the neurologist and me. I did get the diagnosis while in the hospital for the implant after going into paralysis and being observed by the doctors. The paralytic episode was caused by a mistake. They gave me a saline drip and lidocaine during the procedure. My diagnosis was actually based on an accident.

Since my diagnosis nine years ago, my husband and I have created and now manage the Periodic Paralysis Network. We are an organization with an online community of nearly 1,000 people who are affected by Periodic Paralysis. The Periodic Paralysis Network provides a hands-on approach to understanding the disease, getting a proper diagnosis, managing the symptoms, and assisting caregivers and family members. Our focus is on educational resources and self-reliance. Our approach to treatment focuses on the self-monitoring of vitals and the management of symptoms through all natural methods. We continue to do research and provide the latest information to our members. Everyone is welcome. Members will receive encouragement, support, sympathy, empathy and validation. Members will also gain information and knowledge about all aspects of Periodic Paralysis. Members ask questions and share ideas. We are usually on in real time, answering questions and providing support as needed for our members.

We have also  written and published the books, Living With Periodic Paralysis: The Mystery Unraveled, The Periodic Paralysis Guide and Workbook: Be All You Can Be Naturally, A Bill Of Rights For Periodic Paralysis Patients and What Is Periodic Paralysis?: A Disease Like No Other. If you wish to know more about Periodic Paralysis, you may visit the Periodic Paralysis  Network.        ( periodicparalysisnetwork.com )

 ***** I have now been diagnosed genetically with Andersen-Tawil Syndrome (ATS) KCNJ5 and Hyperkalemic Periodic Paralysis (HyperKPP)/Paramyotonia Congenita (PMC) SCN4A  *********

Until Later...