Friday, October 8, 2010

Sometimes it's a Struggle

Right now, I am in a very low place with my illness and its process. In fact, this is the worst condition I have ever experienced since my initial collapse in 1979. I have developed a complication that, according to medical journals, is found only in post operative complications, or in the dying. There is no treatment, and everyday is a struggle with this life threatening complication.  For those who wonder what it is : paralytic illeus. My doctor believes it's neurological. This is not something I was prepared for... I didn't know it existed. It's taken over 1 year to determine that it is neurological. An administrator at the clinic where mt doctor works asked me, "How does it feel to be at the cutting edge of a new disease?" The question shocked me. My immediate response was to her was "Like hell."
New disease???? I've had it over 30 years!

Things have been made  more nightmarish by a type of insomnia that seems to be neurological. No amount of medication has allowed me to sleep. Part of the problem here may is that my reactions to chemicals (ingested and airborne) &  foods has changed suddenly, so I have to learn all over again how to deal with everything. Some examples: sedatives make me hyper. Yogurt gives me a migraine. Perfume closes off my airway. I have always had Multiple Chemical Sensitivities, but it's gone to a whole new level.

I have hesitated to share any of this, because I wanted the blog to be honest, but somewhat uplifting.

Toni Bernhard's new book, How to Be Sick is sitting beside me everyday.
I am reminded to be empty of expectations.
But, sometimes it's a struggle.




*Note: Toni's book is not just for Dharma students. It is helpful for anyone chronically ill, or those who love someone chronically ill.

6 comments:

  1. Sending only good thoughts and intentions your way. What a weird question for a medical person to ask a patient.

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  2. I'm so happy to hear that you're finding my book to be helpful. I keep it by my side too and refer to it often. My husband jokes that I'm being helped by my own book.

    It sounds like we're on a similar journey -- using Buddhist practices to help us live better with ME/CFS. By the way, I've read all the books on your recommended reading list.

    I hope with all my heart that my book continues to be helpful. I'm depending on word of mouth for people to find out about it so I greatly appreciate that you mentioned it.

    Warmest good wishes,
    Toni

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  3. I am so sorry, d!!! Gosh, I am glad I scrolled through my list and found your blog, as I haven't seen it appear in my dashboard. My heart and thoughts are with you. I will look for your blog more often! I don't know what to say. In a newsletter I receive was a memoriam list of seven pwc's. Some pwc's die from other illnesses that cfids leads to like lung disease or heart disease or God/Goddess only knows what else. It's so sad. It's so unfair. And too many die by suicide. We are so lucky just to be alive and to reap every ounce of beauty and joy that is all around us.

    Judy

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  4. Wow-what do you do for a paralytic ileus? It sounds incredibly uncomfortable.

    I always find it refreshing when people are honest in their blogging. I think its vital when living with this disease.

    I'm dealing with some sort of problem with my terminal ileum (I think). I'm trying to get the courage up to see a GI doctor about it.

    Hang in there d...

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  5. I enjoy your blog and come back to it because it seems like an honest journaling. I have found it very uplifting and helpful. Illness is a hard knock and maybe it's human nature to just feel peace in knowing you're not alone in it. I feel that way.
    I am so sorry to read about your latest "diagnosis". I hope that you can find some peace and some form of comfort while they determine how they will tackle this.
    I just had to post a comment because I found myself whispering, "No expectations" as I tried to struggle through my day. It is a hard practice but I have found it to be very helpful. I had totally fogotten how powerful a method it can be until I read your blog.
    I enjoy your blog. I do hope you feel better.

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