Saturday, January 05, 2013

Windlost: More Deep Thoughts


As a follow up to my previous post (about my health), I wanted to thank all the kind, lovely, gracious, thoughtful and generous people who commented and emailed me.  I was flooded with support, encouragement (which I sorely needed) and a whole lot of new ideas.  I will follow up and share my health plans and some of these new ideas in the days to come!

I included the quote above because it's always reflected my outlook on life.  It is really the essence of Windlost.  

Without sharing details, I had both a hard and also a beautiful childhood.  There was not much economic opportunity where I lived, so I started to study very hard at a young age.  I did the best I could with what I had where I was.  I nurtured my brain.  While other girls were smoking in cars with boys in high school, I was at home studying (to get to heck out of there).

I didn't feel I had the luxury to choose a fun or pretty career.  In fact, with no exposure to fun or pretty careers, I don't think such things really even occurred to me.  I chose engineering because I was good at math and science, liked it, and knew it would give me a decent livelihood.  I guess I was doing the best I could with what I had.  (My only regret is that I didn't study medicine - it pays better, is no harder than engineering IMHO, and you get to help people instead of sitting alone in front of a computer all day!).

As a sensitive aesthete (I didn't know this at the time), all I knew was that I wanted to buy a nice house, have lovely things, and travel.  I knew this required money (and that engineers always had jobs). 

I enjoyed other things more (who doesn't?) like reading, decorating, photography, and the arts, but I intentionally chose a practical career that would always be in demand.  I am sure many, if not most, people are in the same boat (otherwise there would be no dentists, lawyers, accountants, etc. as everyone would rather be playing piano, painting or baking cookies!).

So then you end up somewhere in life, making the best you can out of your circumstances, trying to pay off student loans, get a job, save a little money.  I was just getting on my feet at age 27, two years after finishing grad school, when my headaches started.

The headaches and the pain began to absorb my life.  
In keeping with my mantra, I did the best I could with what I had.  I tried to find help.  I went to many doctors and therapists.  I had to keep working (very tough but what choice is there?  At the time, my mother, who lived far away and was working herself, was caregiver for my father who was battling a 17-year degenerative neurological disease of his own).  I forged ahead.  The timing sucked, since early in your career you really need to put in a lot of extra effort.  I kept long hours at work and slept much of the time at home.  Seven years later, I was blessed to find an amazing person with whom to share my life.  Since then, life has been good.  And also so difficult.  

Chronic pain sucks.

I have learned that sometimes you ask for help and it isn't given. And that it is work to not hate people who are unsympathetic or oblivious/unconscious (I have family members who fit in this category, who provide NO support or interest despite knowing about my daily struggles).  I don't talk much about my health with others, but when I do, for once it might be nice to get more than a glazed look in reply.  Even "I'm sorry" or "that sucks" would be helpful.  

Pain and illness can be ARE very lonely, isolating and frightening.  Trying to obtain a diagnosis and treatment plan can be frustrating at best.  Doctors appear to know very little.  If I had a dollar for every doctor who has asked me "have you tried yoga?" I would be rich!  On the other hand, I've had some excellent paramedical practitioners (chiropractors, physios, massage therapists) who have greeted me with compassion and interest.

I work each day to be a softer, gentler person and not a hard and angry one despite my situation.  Some days, this takes a great huge amount of work.  Other days I am full of gratitude that my health is not worse, that I can get out of bed.

I have a disabled friend, and my health struggles pale in comparison to what he deals with each day...difficulty getting dressed, eating, getting to appointments.  My life is easy in comparison even though my brain and back aches all the time.

Perspective.

With all that in mind, and all your kind words, I feel much more hopeful.

From the stories I have heard I know:

I am not alone.  I am humbled to hear what many of you are going through (your own illness, that of loved ones, and your losses).

I have to keep trying.

Having a cat is the best thing ever (okay, second only to a wonderful caregiver who should really get top billing).

I have to do the best I can where I am with what I have.

I also know that I have to keep writing.  This blog has been a creative and emotional outlet and a place of great catharsis and community (I have found all of you, after all).

I will continue to write about decorating and the lovely things that make me happy. 

But I will also talk more about the my chronic headaches and myofascial pain, as they are at the center of my life
every. single. day. 

I have also learned that MANY readers are here because they also have headaches or chronic pain and found me when I wrote about those things.  So for now, I will maintain one blog! 

(I invite healthy readers to skip the more serious posts)

I don't know if this is the right direction, or how it will feel in a month.  Since I am still smitten with decorating, I will probably do a blend.  And there are long periods of time when I get sick of thinking and writing about headaches and want to avoid the topic altogether.  So the only change you see will be a little more headache stuff, but I'll try not to overload you...!

And in my opinion,all you have to do in 2013 is the best you can, where you are, with what you have.

And remember, whether you are sick or not, if some days all you can do is sit on the couch in your pajamas, you are a success to me and you are not alone.  I do it often.

20 comments:

  1. Anonymous6:40 am

    I was diagnosed with cancer last month. Out of the blue at my regular annual physical. With each scan and biopsy the news got worse. I am 67 years old and live alone. I have no family in the world. Friends and neighbors in my retirement community have been good about pitching in to accompany me to appointments and procedures, but I am left alone the rest of the time, because they have their own spouses and activities to attend to. In the dark of night the panic assaults me, and I fear for my sanity. Your blog has let me know there are others who understand what living with chronic illness is like.

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    Replies
    1. Anonymous, I am so sorry to hear this. You must be so scared! And being alone makes it all the harder. Are there online support groups you can find? That might help a little. There is a good book called "How to Be Sick". it is about chronic fatigue, not cancer, but it has a helpful view on illness from a buddhist perspective. If you are not keen on Buddhism, you can still read and get the various mental help points she shares, how to control the panic and worry, etc. It is quite helpful in the middle of the night!
      Please email me if you would like to talk: pricet at telus dot net.
      Hugs, Terri

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    2. Anonymous3:09 pm

      I will take you up on your offer soon, Terri. You are so kind to extend it. In the meantime, I forgot to say how much I enjoy and look forward to the photos of Biscuit. He is such a striking cat. Please keep them coming. Lynne

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  2. Well said, my friend. Oh and I couldn't agree more that having a pet is such an important part if ones life! Funny you commented about being an md vs p. eng. my hubby often thinks that dentistry would have been a nice career. In fact, he took quite an interest to veterinary dentistry while I owned my practice.

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  3. This is a beautiful post, Terri. You have an amazing attitude. I'm glad you're feeling more hopeful, and I pray that you find a solution to your headaches and pain very soon.

    To the very first anonymous commenter who was recently diagnosed with cancer, I will keep you in my prayers also. Try not to be afraid. I know it's easier said than done, but many people fight cancer successfully. Stay positive!
    Claudia

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  4. Hi, Terri - Thank you for this lovely follow-up post! I think we can all relate to what you've said here. And I want to add that having a positive outlook enables you to cope better with stress, health problems, etc.

    Perhaps your career will change in the future? I didn't discover antiques and decorating (professionally) until about 10 years ago. I went to school and studied finance and accounting, and work successfully in those fields for over 10 years.
    Hugs,
    Loi
    PS: I believe having a pet is the best therapy!

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  5. I am thinking of you and anonymous! My own health took a turn for the worse in October, so I am very sympathetic to what you are dealing with. I came home from work, put my pajamas on and was in bed by 5:00o'clock. This is not as fun as it sounds because I like being an active person. I continue on my journey back to wellness, and hope that it is achievable for all of us.
    Much love and prayers!
    Karen

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    Replies
    1. Hi Karen, I am so sorry to hear of this turn of health for you. Crap! I hope your journey takes you to back to health or at least peace. xo Terri

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  6. You are a beautiful soul. I read this post this morning just before I had to zip out the door and then again just now. I am glad that you will write here about whatever you wish to. One blog is so much work. Two would be even more. Three? How do gals do it?! Let us know what helps as far as treatment and response from those around you. For example, I so appreciated the concrete advice to "say something" rather than to look dazed. Sometimes I am dazed because I can not imagine another's pain or another's sorrow. My own cousin, who suffered so long with scleroderma, did not get the support from me that I might otherwise have been able to provide. Sometimes, it was all I could do not to cry just to see her so afflicted. Sigh. All too often people who are suffering hide their pain to protect the rest of us who don't know how to respond adequately. Learning. Teach me.

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    Replies
    1. Yes, that is a good point. Some people don't know what to say but they are kind and feeling people. But I know others who don't say anything because they just want to talk about themselves and have nothing to say when I talk about my health! They are too absorbed in their own egos. I am letting these people go from my life. :)

      With regards to having something to say, I think honesty is the best policy, whether it is "my heart is breaking for you" or "is there anything I can do" or "that must be so scary" or "do you have anyone to help you" or "I feel so sad for you". If it is someone you don't know well, you can say "I am sorry to hear that" or "how are you managing?".

      I met my disabled friend at a medical appointment. He is clearly very disabled and reminded me of my father's condition. I just said to him "how are you doing?" and within minutes, I asked him about his condition (politely). I didn't pretend like everything was normal, because clearly it isn't! He was SO happy to talk about it. Illness can be very isolating and it is so nice to have someone interested in us!

      You are a lovely and kind person. Reach out to someone who is unwell. They would LOVE to have a visit or hear your voice on the phone.

      xo Terri

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  7. HI Terri, So glad you are going to keep it lal together. It's all good honey. The bad and the good, we all have are junk our baggage our ailments, our pain but they create who we are and as we grow older and mature we realize that those who accept the entire package are the ones we should rely invest our time with, the others, well, perhaps they have not matured yet or come to that point.
    So love your cat. I can't imagine my life without my pains in the bum dogs that I truly love and give me moments of pure joy. Terri, it's all about sifting through and finding pure moments that bring us joy.
    Peace my sweet blogging friend
    xoxo
    Lisa
    Leeshideaway.blogspot.com

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  8. Hello Terri,
    I think many of us chose careers that were practical and would guarantee a good income because it was the thing to do. I think creativity and science/math can live together well - you bring an exacting perspective to your decorating which is so elegant.
    I'm glad you are continuing with one blog - it's one of my favourites. I hope that you soon find relief for your headaches. Your motto for moving ahead (which has been yours in the past as well) is a good one. Do what you can...
    It's good to hear how to respond to people in pain. I think I'm learning, as I go through life, that a kind word, and a willingness to put myself, however imaginary, in someone else' shoes contributes to my understanding and ability to show compassion.

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  9. Oh, Terri, I am so, so sorry about your headaches. I knew they were bad, but I didn't know how bad. I'm glad you've decided to keep on talking about them in your current blog. You sound like such a kind, thoughtful person - you don't deserve any of this! I am currently caring for my mother, who has dementia. She's always been a very mean, cruel, self-centered person and has become even more so with the onset of dementia. Between that and losing my job a week before Christmas, I'm trying hard not to succumb to the depression that seems to have enveloped me. But, compared to your chronic headaches, I feel lucky that depression is the only thing I have to deal with.

    I think about you quite frequently since you started telling us about your headaches. I hope, with all my heart, that the doctors are able to find a cure for you. But in the meantime, as you say, just do the best you can, where you are, with what you have.

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  10. Hi Terri, I think you have a very good perspective on life and I am glad you are keep the single blog going. The blog is not just about decorating but about you as a whole - and that is why we are here!
    xo,
    Phyllis

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  11. Denise9:49 pm

    Hi Terri, I have followed your blog for quite some time, we share many things - I'm Canadian, I love design as I am an Interior Designer by profession and I was also diagnosed with Myofascial Pain Syndrome. I am compelled to write to you because I know what it's like to live with chronic pain, but I also wanted to share with you that I have been able to overcome it and now live my life pain free. It happened 16 years ago I was involved in a serious car accident-hit head on by a drunk driver. Long story short, besides some cuts and bruises I didn't show any other visible trauma at the time of the accident. A few weeks later I started getting pain in my chest (where the seatbelt would have crossed it) months later the pain moved to my neck and back. I went to numerous doctors, specialits, I was even hospitalized - you name it. Finally a rhumotologist diagonosed my condition after a year of depiliting pain. That year I had been on numerous pain medications, given shots of demerol at the emergency many times, MRI's CT scan nothing showed...no one knew how to help, the only thing I was offered was pain medication that progressively got stronger and stronger. Finally I decided I was going to change my path, I had a two year old son at the time and was unable to care for him, being on such strong pain relief. I decided that I would do everything in my power to help myself - take charge of my pain. I started researching how to boost my immune system. I started eating organically. I went to an accupunturist and a naturopath who specialized in chranio sacril theraphy (probably not spelt correctly)I'm not sure if you have tried this but it really helped me. I took vitamins and minerals. I also started to meditate. But I think the most important thing that i did was I surrendered to the pain. I stopped trying to control it. Pain has a life of its own and it is exhausting, it is overwhelming and it is brutal. I trained my mind to focus on the positive, help my body overcome the pain, all I can say is our minds are incredibly powerful and can help our body's heal. It took several months but I was persistant to live without pain. I also kept a gratitude journel and wrote down everything I was grateful for. I know this sounds crazy but I can honetly say that was 14 years ago and I am pain free today. I have since had many trials and tribulations in my life that I was worried would set off the pain again, but I still practice positive thinking and mediation and I still focus on my eating, exercising and getting proper sleep. The pain has not returned and I am able to function exactly like my life before chronic pain. I truely know how you feel. As I read your posts I started to get tears in my eyes - I know what its like to have people look at you and say you look fine from the outside, you don't look like you're in pain! I know the frustration of dealing with employers who don't understand and expect you to perform and be productive. I think you are very smart to take time, only work three days a week so you can focus on your recovery. I believe you will be able to overcome your pain, because I was able to over come mine. Think positively, be kind to yourself and your body will respond.....

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    1. Thanks for your comment! What a terrible journey you went through. Sadly, positive thinking has not worked for me. I eat a healthy diet, exercise as much as I can, practice excellent sleep hygiene, meditate and think positive. It does not help. I am not sure what magical combination of things I am supposed to try.

      Pain is a real illness in itself - when the brain's pain management system does not work properly. Perhaps positive thinking, and all its attendant good behaviors, helps some but it does not help everyone any more than positive thinking helps people with MS or cancer or rheumatoid arthritis. Putting the onus on the sufferer to "think positive" and "do all the right things" is unfair. This is exactly the reason people do not take people with chronic pain seriously. They think we can control it. They think it is psychosomatic, created by our psyches and controllable if we could just stop being so emotional or doing the wrong things. That is incorrect. Pain is an organic illness like any other. Trying hard does not work for everyone! I am a positive and optimistic person and have been a good girl for 15 years. It is not helping.

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  12. michele6:55 pm

    Dear Terri, yes as many of us know, you are SO not alone. I am nearing 50 and had near-fatal injuries several years ago, with the subsequent inability to function and illnesses, which has ended my life, career, dreams, hopes, the whole nine yards. I spent so many years and thousands of dollars seeing doctors/specialists/practitioners/healers/therapists/etc all over the states and ended up with no consistent diagnosis or healing approach. I finally gave up realizing health crisis have become beyond our understanding. It was quite ironic with severe cachexia due to the body shutting down and people tell me how "great" I look because I am so "thin" - when it is all I can do to get myself out of bed. I feel like I could be 150 years old. And you are right, unfortunately even family and close friends disappear because it becomes "too uncomfortable" or something. I don't know.

    Now that Life has kicked my ass, It has me here isolated and alone (with my cat) waiting to die, which is hopefully very soon. It sounds amazing and awesome that you still have interest and fight left in you, which is probably due to the support of your husband, but I honestly could care less anymore. And I fully agree with your comment above. While I am glad many seem to get relief through nutrition or meditation or various "therapies", it does NOT work for everyone. In fact, it definitely has seemed that every approach I have tried (and I faithfully tried just about all of them) set me further back than if I had not done anything.

    Anyway. It seems we all have our stories. I do hope you find some relief soon so you can truly enjoy those things you still enjoy before you lose all hope and end up like me. I suppose one thing we could hope for is that life is completely meaningless and when we die it is like waking up from a really bad nightmare. Take heart and sending good thoughts.

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  13. Hi, just scrolling through and noticed your comment about myofascial pain. I'm a licensed massage therapist, though I haven't practiced in years, and wondered if you've checked into myofascial release or, maybe even a better option, rolfing. Both are wonderful options to help you get some relief and often are covered by insurance providers. Best of luck, it's so difficult living with chronic pain.

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