Catch Up Mondays – Dealing with the Isolation of Illness – revisited

This was originally posted on May 29, 2012.  Chronic Illness brings with it an isolation that is so difficult to describe to others who go about their day-to-day lives without thinking about how lucky they truly are.  I felt the need to write about the difficulty of dealing with isolation.  I hope you find it helpful.

I wrote a few days ago about how the mold exposure and chemical sensitivities that I developed because of it caused such loneliness and isolation.  I was sad all the time.  I felt an ache deep inside because I had lost contact with so many as well as the inability to visit friends or do  many of my “old” activities.  I would be awake early in the morning and cry as I wrote in my journal.  The crying sometimes was more like screaming or keening not just crying.  My heart was just broken.

My therapist first reminded me that I needed to write in my journal daily.  Writing is cathartic.  It helps release emotions that are kept bottled up inside.  This writing frequently included crying and screaming as I released the pent-up emotions.

My therapist also asked what can you do?  What do you like to do?  My first response to these questions was that I didn’t know what I could do or what I liked to do.  It had been so long since I attempted anything.  I had tried sewing in the beginning of this illness and it just made me anxious and it was something that used to relax me.  I remembered that I used to like to embroider.  I  went online and bought dish towels, a transfer pattern and some thread.  I soon discovered that this was relaxing and filled some of the void I was feeling and before too long everyone had embroidered dish towels.

I began reading again.  I read things that weren’t related to illness.  I read books that took me away from my isolation and into a world of suspense, drama and sometimes comedy.  Having always loved old movies, I began to search out old movies that I could purchase on DVD.  On those nights that I couldn’t sleep, I would pop one into the DVD player and take myself out of my world and into another.

I also began to find ways to meet friends on neutral territory by meeting in my back yard or theirs when the weather was cooperative.  I began to enjoy packing a lunch, making the long drive to the ocean and sitting on the beach and watching the waves for a few hours before the long drive back home.

It didn’t seem like others truly understood what I had been through or how it felt dealing with all the medical and emotional crises I was going through.  The thought came to me that I should write a book.  I had recently bought a new computer and so I began to tell my story.  This story, my book, has taken nine years to complete.  Reliving all the trauma and emotional stress I have gone through is not easy.  While it is good to write and get through it, I found that I would start typing and suddenly have to stop.  Reliving the pain was too much and I would develop a panic attack.  Weeks and sometimes months would pass before I could pick up again.  After the initial writing was done I pulled out the journals and went through them to finalize my story.  This was the hardest part for me; reading what I had felt.  I knew I was sad but after reading my journals as a person who is learning to deal with what my life has become, my heart ached for the person I was then.

For me to overcome some of the isolation I felt I just had to write, find things that took me away from the feeling, find creative ways to fill the void, have a good therapist with whom I could talk and realize that I had to allow myself to grieve for the life I had lost and to celebrate the life that I still had.  I am not saying that I don’t still grieve for my old life or suffer bouts of depression accompanied by severe crying fits.  I am saying that by finding outlets, they are less severe.

I am curious how others have dealt with the isolation caused by multiple chemical sensitivity and other allergies.

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13 responses to “Catch Up Mondays – Dealing with the Isolation of Illness – revisited

  1. I’m still learning to deal with it. I’m only three years in right now. My friends don’t really get it, and why should they? They aren’t living it. Honestly, I think the isolation is the hardest part for me. I’ve finally (most days) gotten past the being angry part, and I’ve started to pick up doing things I used to love. I’ve started doing water colors again, and I’ve also developed a love of urban foraging. The best way I’ve found to cope is to take everyday one at a time. If I need to scream and cry that day and be angry, that’s what I do then I journal about it and move on to the next day.

    Thank you so much for posting this. I really think most people don’t understand how hard it it so be isolated with something like MCS. You’re right-you do have to grieve for the life you once had. It’s like someone comes in and erases every detail about your life and makes you start over from scratch.

    • Alison – Thank you so much for taking the time to read my post and more importantly to leave a comment. I have tried to leave the anger behind too because it is so detrimental to both my emotional self and my immune system. I still have my days where I want to scream and cry and be angry over my situation and I have to allow myself those days without feeling guilty for them. My journal has been my best friend through all this. I can cry into it, write things that I wouldn’t tell anyone else (although I am now telling them in this blog and in my book), and learn to let go. Grief is a big part of dealing with illness and we have to go through it. Just like grieving the death of a loved one, there will be days that something triggers a memory of days gone by where we could go to the movies or spend the day at the mall and the sadness washes over us. We just have to learn that it is just a part of grieving of our past life.

      I am so glad that you are finding some things that give you pleasure again. Finding something that brings joy goes a long way to healing the heart.

  2. Kathryn— you are braver then I am— I have boxes & boxes of journals that I wrote to stay sane when I was so sick & all the doctors told me to go home & get ready to die– & could not eat & my body was feeding on it’s self– & having water toxicity as that was all I could keep in my body for weeks– & panic attacks– so bad I begged to die— I put it all in journals & kept the journals– BUT I HAVE NEVER REREAD THEM- EVER!!!! LET ALONE THINK ABOUT WRITTING A BOOK—YOU ARE BRAVE– REALLY BRAVE SISTER!!!!!! 🙂 I am anxious for your book- & for you to be published- but I am not sure I can read those experiences either–that you went through– I have hundreds of e-mails a week from MCS sisters going through so many different paths with their journey with MCS—& sometimes I am beyond drained– & used up -trying to support them— & just listen to them– when they have no one else– they say who cares!!!
    I think when we retired & moved to a different state where we knew no one– & had no friends in the area– & no family— it was almost easier–then staying where we were & having to deal with family & friends who had no clue about MCS— or seemed to give a rat’s butt!!! When we moved– it was totally starting over from scratch– new area– new home– new friends– no family– not saying it isn’t isolation also– as it is— but I don’t have the DRAMA — THE DAILY DRAMA!!!! — I was the “care giver” to all of our family & friends– & it was expected of me–as that was my role in life for ever– taking care of everyone else– & doing what no one else wanted to do–& picking up the bill for eveyone else!!! And working many different jobs at the same time– it was expected of me & I did it!!! When we moved– away from EVERYONE– I started taking care of ME!!! BUT for “my addiction of taking care of others”– it is the hundreds of MCS sisters who e-mail me–with their stories & lives & troubles & the MCS blog I do— that way I keep up my addiction for caring for everyone else!!!! 🙂 But by long distance!!!!! 🙂 hee hee

    • While it was difficult reading what I wrote in the journals, it was also healing for me. To see where I was then and to see how far I have come in accepting myself and my illness made the read worth it. I hope others who are able to read my story will see that despite the difficulties I have been dealt and what I have gone through, I have survived! I have found the courage and hope to keep pushing forward not only for myself and my family but for others as well. That is why my subtitle is so important to me. It has been my battle for survival, courage, and hope.

  3. I started journaling then began writing poems which turned into a book of poems and short stories. Revisiting everything is very hard, it took me almost ten years to write it… the isolation can be heartbreaking! I lost all my friends and my family just doesn’t understand. My only solace comes from my daughter who does understand because she too is fighting the same battle. Thanks for your posts and sharing your story! …and ps. listening to music always helps, it’s healing.

  4. Pingback: Catch Up Mondays – Dealing with the Isolation of Illness – revisited | allergictolifemybattle | sondasmcschatter

  5. Ive been isolated from being sick from mold and I live in a bubble. Have not found outlets yet except some exercise/Maybe I will try writing. I am on depression meds and have cognitive problems, MCS,PTSD and more. Thanks for writing some things to help. I hate where I am/

    • Janet – Thank you so much for commenting on the topic of isolation. My cognition was much worse than it is now. I would read and put the book away. The next night I would have to re-read a few pages to know what had happened so I could continue to book. I still can’t start a book if I am tired because I won’t remember anything when I pick up where I left off. Writing/journaling helped me a lot. I did crossword puzzles when I could and even read the technical books that came with a VCR, camera, etc. trying to learn and retain information. I have read some of the directions for my camera and still don’t remember how to use certain functions unless I read about them again and again. I know you hate where you are, it is not a comfortable place to be in. I still sometimes look around my home and it reminds me of a doctor’s waiting room. It is not warm and inviting like where I used to live. As much as I try, I still don’t get that feeling. Hang in there.

  6. I’m just beginning to deal with the isolation. I wrote a blog post here:
    http://www.dunebythesea.com/2013/04/isolation.html
    For me, it is really even more difficult to deal with my kids’ issues than my own. It is hard to see your child lose coordination in the pool and know that pools are now not safe for your kids. To see rashes after a gymnastics class and quit. To see eyes glaze and confusion set in because of a friend’s laundry detergent. Ah well. I usually get hit first, so by the time they are reacting, I’m usually brain dead. But the times when they were hit first, oh it is so hard to watch.

    • This has got to be extremely difficult for you. I know how hard it is for me but cannot imagine what you must go through as a parent with chemical sensitivity watching the same in your children. You have my utmost respect.

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