Tag Archives: depression

Not-To-Do List

How many times have I talked about my to-do list or lists in general?  Probably more times than you wanted to hear about.  Today I am going to talk about a Not-To-Do List.  Author Toni Bernhard (How to Be Sick and How to Wake Up) writes a blog post titled Turning Straw into Gold for Psychology Today.  Earlier this month she wrote a post titled “A Not-To-Do List for the Chronically Ill“.  The post offers eight tips on what not to do when you are chronically ill.

Toni has lived with chronic illness for over ten years and her insight about dealing with chronic illness and how we often treat ourselves when we are chronically sick has provided a great deal of help to others. 

I think you will enjoy Toni’s Not-To-Do List as much as I did.

 

 

 

Catch Up Mondays – Comparing this illness with cancer – revisited

This was originally posted on July 12, 2012.  Again, I stress that I am not minimizing anyone’s battle with cancer.   I was lost and no one seemed to truly understand what I was going through because what I was going through was not accepted or understood like cancer.

Back in the middle of this illness as I was losing friendships, losing my self and realizing not very many people really understood what I was going through, I began comparing my illness to someone with cancer.  What I wrote was in no way meant to minimize cancer (I have had my fair share of cancer scares.).

Not it’s not cancer

            Cancer patients take treatments and either

                        are cured or die at the end of so many months

            I don’t want to have cancer

            I don’t want the treatments but am not

                        afraid to die

            I will not die but how much

                        better will I get – there is

                        no answer

            No, it’s not cancer

            It is mold and chemical sensitivity

            Cancer patients, at least in the beginning,

                        can go out to the mall, to movies, to visit a friend

                        go on trips and stay in hotels

            I cannot go do all these things

                        and when I finish treatment

                        my limitations will not change

            It is not cancer

            Cancer patients are understood

                        because their disease is understood

            My disease is not understood by

                        many

            Few can fathom the world I have

                        been forced to live in.

            Few can understand that mere mold

                        can be so devastating

            It is not cancer

            My body is not ravaged by it

            My body has been ravaged

                        by mycotoxins – which

                        ironically can cause cancer

            I will not die and leave

                        this world for a spiritual one

            I will leave this world for a world of

                        shelter, loneliness, and isolation

            I will give up my “things” for ones

                        less beautiful and comfortable

            I will give up my pictures and

                        collections in trade

                        for their memories

            I will give up my lunches out with the girls

                        for a bowl of beans at home

                        by myself

            No it is not cancer

            But a different sort of cancer has taken

                        my life away and left me

                        caged and feeling very alone

A friend who also has suffered with the ravages of mold exposure and the loss of friendships, dealt with the isolation, and fought back recently sent me the following link.  While the link deals with what to expect when you are diagnosed with cancer, a lot of the same things apply to having this illness.  I was truly moved by what the author wrote.

http://www.huffingtonpost.com/jeff-tomczek/cancer-advice_b_1628266.html

How not to treat yourself with chronic illness

Toni Bernhard writes for Psychology Today in a blog called Turning Straw into Gold.  Toni lives with chronic illness.  In fact she spends most of her days in bed with flu like symptoms that began over ten years ago.

I have read Toni’s book How to Be Seek:  A Buddhist Inspired Guide For The Chronically Ill And Their Caregivers.  This is a wonderful book about dealing with chronic illness and can be used by anyone.  Toni has written a second book, How to Wake Up:  A Buddhist Inspired Guide To Navigating Joy and Sorrow.  In a recent post on How Not To Treat Yourself With Chronic Illness , she talks about how she treated herself when first diagnosed with chronic illness and states that this topic is expanded more in her new book.  I have Toni’s book in my list of books to be purchased and read soon.

Catch Up Mondays – Are we really who we think we are? – revisited

I first posted this on June 21, 2013.  I quoted an excerpt from my book (in bold) where I said I had another of my emotional meltdowns.  I was always having emotional meltdowns.  I was over a thousand miles from home by myself and had been there for months already when I wrote this.  I had also in that short time gone through a complete hysterectomy and my sixth sinus surgery.

I had another of my emotional meltdowns. I commented in my journal that “everything I do is really someone else or their perception of what I would want or need. The cards I send out are picked out by my daughter. The fabric for the dress I am wearing was picked out by someone else. It is nice but I am not sure it is something I would necessarily pick out for myself. It is just that this is supposed to be a special occasion and I don’t really have control over it.” This note started a long writing about how I was feeling (May 14, 2003):

I am not me anymore

The me that existed before this illness does not exist anymore

I am now bits and pieces of others and their perception of what I would buy, wear, or send

You see I must rely on others to purchase cards, clothes, shoes, and my food

The card you receive may have my signature and a short note – but it was chosen by someone else

The sewing or craft project I should like to do may be my craftsmanship – but the fabric, trim, and buttons are of someone else’s choosing based on their perception of me

I am not me anymore

What is there for me to do? It is no longer fun to create new craft ideas with materials I have not taken time to pick out piece by piece

I am not me anymore

I am lost and trapped in a world of emptiness and uncertainty

Who am I?  I don’t know anymore;  of one thing I am certain; the me I once knew is lost and may never return again

Who am I?

Somewhere deep within this body there has got to be a somebody that can care again

Somewhere deep in this soul there has to be something to want to get up in the morning and do

Somewhere deep within me there has to be found a hope for a better life

I feel as if I am slowly wasting away and disappearing all together

I don’t think the me I have known for many years will ever be back again. Too many changes physically and emotionally have taken place

I have to try and find out who I am now and learn to love and accept this new person as much as the old one

I must figure out a way to get what I need on my own

I need to figure out how to fill my empty days with something that makes me excited

My body is frail and thin. I need to build it back up so it can help me fight

I have got to find the strength to do this within or I will soon disappear deeper into the shadows

I am trying desperately to fight the battle

But at times it feels like it is a losing battle

This was taken from my journal when I was feeling so depressed at not being able to choose things for myself and I felt like I had truly lost myself.

A few days ago I had a phone conversation with my therapist.  The conversation came around to clothes and style (not knowing what mine was) and wove itself back around to who I am.  The conversation was about in the beginning of this illness everything including clothing was purchased for me because I was unable to venture into stores to do my own shopping.  My style became whatever was purchased for me or what someone else thought I would like.  What prompted this conversation was because recently I attempted a short trip into a store with my daughter wearing my mask to find myself some shirts.  After a few minutes my daughter mentioned all the nice things there were and did I find anything.  I told her that I had not.  She then came to me with things to try on; things I would never have picked out.  I ended up with one shirt.  The dilemma I have is that I really don’t know what my style is any more.  What do I like, what do I not like, what is just so so for me?

I don’t need clothes for work because I don’t work outside the home.  I don’t need fancy clothes for parties because I don’t go anywhere requiring such fancy clothes.  I do, however, want to look nice and feel good when I go to a friend’s even if we are only sitting in their backyard playing cards.  Yet I don’t know what I want.

As my therapist and I continued our talk she talked about how she had clothes for her counseling work, clothes for her volunteer work, for her gardening, etc.  Those were all different styles.  I needed to think what I do and then try to find a style that fits what I do.  I understand the concept but still don’t know what I like or don’t like.  I don’t have any idea of what really fits me well because I don’t go out, try clothes on and buy them like I did before being ill.

Maybe we really aren’t who we think we are?  Because at any moment a tragedy or life changing event happens and we are no longer the same person because of these life-changing experiences.  We also talked about how we are all constantly evolving and changing either through our careers or in my case through my illness.    Then it dawned on me!  Back in the day before I became ill I was constantly changing curtains, pillows and decorations in my home as I changed and my likes and dislikes changed.  Even back then I was changing and evolving. The same thing was happening with my clothes.  While I get the idea, I am still struggling with what my style is.  Maybe some day I will know but then again maybe I won’t.  I am going to have to surrender to the fact that I may never clearly know what I like or don’t like.  This may be a direct relationship to my illness and my now very apparent difficulty making decisions of any kind. 

My questions to you readers are:  Do you know your style?  Do you truly know who you are in terms of determining a clothing style?  Do those of you with this illness have the same struggles?  Do those of you who are not struggling with multiple chemical sensitivity or other illnesses have this battle?

In May I placed a post entitled, Who Are We?  In that post I included a snippet of a poem I wrote about identity loss.  Today, a little over a year after this post, I still can say that I don’t truly know what style I am in terms of clothes and I still struggle with making decisions.

Open Letter Regarding Chronic Pain

Not too long ago I posted a letter from a doctor.  The letter was an open letter to patients with chronic disease from the perspective of a doctor.  There have been many posts and discussions on my blog and on the blogs of others who suffer from chronic and often “invisible” illnesses.

Recently I came upon this Open Letter From A Person With Chronic Pain featured on spine-health.  The letter could be adapted easily to any of a number of chronic illnesses.  The content of this open letter is something I am sure many of us have said to ourselves, openly to someone else, in a poem reflecting our pain or loss, or in a blog post.  I am passing it along to be included with the other letters and thoughts that many of us have shared as a result of becoming chronically ill.

Catch Up Mondays: Why did my face feel like it was being pulled apart? – revisited

This was originally posted on June 13, 2012.  Surprisingly when I have looked at the search engine terms that have led others to my blog, this has been a question posed more than once.  I guess I am not the only one who has felt like this.  — A side note is that at the end I talked about my cover photos – – the cover is done and everything has been submitted.  Hooray!

Valentine’s Day 2001 was anything but romantic. I had been on the IV for a few days and the antifungal drug and oral antibiotic for close to a week. I had gone to work as usual…..Shortly around noon, my throat began to feel restricted. I tried to wait it out. Finally I phoned Dr. D. He suggested that I go to the emergency room. I drove myself to the hospital, which, I realize now, was probably not the smartest thing to do.  While waiting to be seen, I phoned Sarah. I asked her to pick up her father as soon as he got in from school and to drive him to meet me at the hospital emergency room.

The constriction in my throat began to get worse and I was beginning to have tremors. My face felt like it was being pulled apart. The ER doctor came in. I told him—in between spasms in my throat and face—that I was having an allergic reaction to one or more of the medications that I was taking. He asked what medications I was taking and why I had an IV line…..

The ER doctor had the gall to tell me that my reactions were not typical of allergic reactions. I was just having an anxiety attack.

Later the next day while Sarah was visiting and helping me make soup, I began having problems again.  In my book I continue to write:

Some of the same symptoms began while we were working on the soup. My throat began to get tight and feel constricted. We phoned Dr. D, and he told me to come to his office. Unfortunately, he was not in his local office. Sarah drove me about six miles to see him at his other office.

By the time we reached Dr. D’s office, I was beginning to have tremors. He ordered an EKG and had my blood sugar tested. My EKG was normal, as was my blood sugar level.

The tremors and spasms in my face and neck continued to get worse. This time, however, I also began to have tremors on the right side of my body. My right hand and leg would shake. During the spasms in my neck, I had difficulty breathing. The doctor’s staff would ask me questions. I would not answer right away so they would ask them again. I had no control over my body. I had to wait for the tremors and spasms to stop to answer questions. It was if I were riding a wave. I would have a spasm and tremors and then it would stop, only to start up again within seconds. It was almost like a seizure.

I was so frightened, and I hated that my Sarah had to see me in this state. I didn’t want to die here, not like this!

Dr. D ordered an ambulance to take me to the hospital. The tremors and spasms were getting out of control and I needed to be in a hospital setting. I remember hearing his nurse asking if he wanted lights and sirens. He responded yes! He wanted the ambulance there as soon as possible. Hearing the urgency in his voice only made me more terrified.       

I became increasingly sicker and had a fourth sinus surgery while in the hospital and developed so many problems that we had to stop most of my medications to see what was causing what.  I was on an oral antifungal, oral antibiotic and IV antibiotic.   After all this, I thought the worst was over and my journey towards wellness would begin.  I had no idea what was to come.   The tremors and the pulling apart feeling in my face (as if someone was taking my skin and stretching it over facial bones that were too big for it) soon came to be a common occurrence when I reacted to chemicals and molds.

It is because of the skeptics like the doctor in the ER on my first visit and those who know I have been sick but not really known what I have gone through that I have written my book.  There are still so many out there who do not believe mold can make you chronically ill and that there is such a thing as multiple chemical sensitivity.   I hope to have the final edits soon so that I can get my cover photos done and submit it.       

Pain and Friends

Princess and the Pea, a loyal follower to this blog posted a wonderfully written piece on Pain and Friends:  How Chronic Pain Affects Your Relationships.  I have written recently on isolation and dealing with isolation.  This is yet another wonderful piece on how chronic illness whether invisible or not affects our relationships.  I hope you enjoy it as much as I did.

Letter to Patients with Chronic Disease

First I need to apologize to the person whose blog directed me to the blog “Musings of a Distractable Mind”.  I have searched and searched and can’t still can’t figure it out.

In his blog, Dr. Rob wrote a Letter to Patients with Chronic Disease.  I found the letter insightful and he received nearly 200 comments to this blog post.  Please check it out and I would love to hear your feedback.

Vets’ PTSD, heart disease risk linked

In yesterday’s newspaper I read an article from the Los Angeles Times taken from research published in the Journal of the American College of Cardiology.  The article talked about PTSD among veterans.  According to a three-decade-old research project among twins, it was discovered that vets with PTSD were twice as likely to also develop heart disease.

I wonder if the same statistics apply to others suffering from PTSD.  I know many of my fellow environmental illness friends suffer from PTSD.  Who wouldn’t suffer from post traumatic stress at seeing their lives disappear?  Who wouldn’t suffer from post traumatic stress dealing daily with physical illness or exposures or losing their personal belongings because of mold exposure?

Recently I learned more startling news with regard to those serving in the military.  One morning I was sitting in the kitchen eating breakfast with the news on.  It was a human interest type story relating to ALS (commonly known as Lou Gehrig’s Disease).  The host was asking the husband of a woman about her illness and how long she had been diagnosed with the illness.  Surprisingly most people diagnosed with ALS are given a life expectancy of one to five years.  This woman’s amazing journey has last thirteen years, something unheard of by most ALS sufferers.  The host discussed if there was a known cause and the husband said they didn’t really have one.  There was only one FDA approved drug to possibly extend one’s life by 25%.  The most shocking thing I heard was that military veterans were twice as likely to develop ALS as the general public.  My question was why?  What makes those in the military different?  A few things came to my mind.  They often travel around the country and the world.   They are very possibly exposed to more toxic environments than the normal person.  Could chemicals and other toxins be a cause?  I don’t have the answer and apparently no one else does at the present time.  It just seems very strange that being a veteran could double your chances.

Catch Up Mondays: Isolation – revisited

This post was first posted on May 26, 2012.  Isolation affects not only those of us with chemical sensitivity or other environmental illnesses.  It affects anyone who suffers from chronic illness.  We can’t go where others go, can’t eat what others do, don’t have the energy to do what everyone else is doing, and find it hard to explain this to those going about life like we used to be able to do.  I have written other posts on isolation here, here, and here.

“I pray to God for answers. I ask for His support and encouragement. If I have to live in this pain, in this bubble, in this life of isolation and loneliness the rest of my life, I don’t know what I will do.

Recently I was in contact with a friend who is also a mold survivor.  We talked about this blog and topics that should be covered other than excerpts from my book.  She asked if I was going to talk about Isolation.  I said that I had considered it as one of my topics.  In fact isolation seems to be a general topic and matter of woe among fellow mold sufferers and those suffering from Multiple Chemical Sensitivity (MCS).

I soon began to realize that once my life had changed and I was no longer able to attend indoor functions, be among large crowds, go shopping or out to lunch, I also wasn’t being called or visited.  A majority of my treatment took me far away from home to Dallas, TX.  The longer I was there, the less I heard from others.  It was hard going through all that I went through by myself.  I thought when I finally came home, I would be totally well and everything would be the same as it always was.  I soon began to realize what it must feel like for a soldier to return after many months away at battle.  In my book I write:

I also began realizing what soldiers must feel like after returning from an extended tour of duty. How do you assimilate back into your life? Things keep going on and moving forward but you aren’t there to participate in the moving forward. People carry on conversations but you feel like you were dropped in the middle of a story without access to the beginning. So you just sit there, and you listen but don’t speak.

Things were different when I returned home.  I was still sick and still not able to visit in the homes of friends or go out.  So much had happened after being gone for almost a year (2003) that I felt lost in conversations.  Someone would talk about something that had happened and I wouldn’t have the faintest idea what they were talking about because I hadn’t been there, hadn’t been involved in life at home and hadn’t witnessed changes that took place.  In this depressed state I wrote:

Life Passes Her By

She sits and stares out the window and she doesn’t recognize anything

Life has passed her by and nothing is the same

Where was she when all this happened? She was here but

 Life passed her by

Buildings were built and buildings were torn down

    People arrived and left;

 People were born and people died

Life passed her by

People divorced and others married;

People found new jobs and new hobbies

Where was she—she was there

but she did not participate in life

It passed her by

She reaches out but touches nothing;

 Life is just past her grasp

She stretches and bends and tries again

But life passes her by

She talks to people but it is a jumble to understand what they say

The life she missed is just out of her reach

Life passed her by

I learned through a lot of therapy that there were things I could do to try to lift myself up from the loneliness and desperation.  In another post I will talk about things I and others have done.