Posts Tagged ‘family and fibromyalgia’

Fibromyalgia, family and a funky chicken?

invisible pain and fatigue is a long hard row to hoeWe don’t talk too often and sometimes I simply don’t know how to communicate with my relatives.

I recently received an email from one and the subject line read: ” You must do this!!!”

I think I thought there was some type of national emergency or something.

It was an email asking people to pray for people with cancer and then to forward it on to others.

Well, I thought, who would I send it to?

Most people I email to are really busy.  I feel like I’m asking too much of their time if I send them emails asking them to forward a message, although, now that I think about it, people do that with me for causes they believe in all the time.

I didn’t think much about not sending it on as requested and then I saw a note at the end of the email — 93% won’t forward.

I knew I’d be one of the 93%, which kind of didn’t feel too good.  I felt like I would be in a group of people who didn’t care.

Maybe it was the subject line of the email–You must do this!!! —  along with the three exclamation marks that touched on my one fragile nerve I had left by mid-day.

I realized quickly that the email bothered me.  I was taking it personal, or at least in a way it was not intended, I don’t think.  It had nothing to do with my level of care about people who have cancer, along with their loved ones who are grieving too.  I’m sure I care and I did take a moment to say a prayer.

My mother has survived breast cancer and I’m grateful to modern medicine for this because she had about seven or eight aunts who all had breast cancer.  They were not as fortunate to have the treatment that my mother had.

My father died after a long bout of severe pain from cancer.  My grandmother died two years ago, also in severe pain, with a type of bone cancer.

My beloved Free girl, my canine companion, had to go due to bone cancer in her leg or from all the pain pills, the latter of which made her sick.

My friend Sonny, who passed away one week ago today, had throat cancer.  They were able to remove the tumor but the radiation left his throat too dry to swallow, leading to his having to use a feeding tube, subsequent weight loss and weakness, all of which shortened his life.

I am no stranger to loss as a result of cancer.

I care.  I care about people in general.  I hurt when someone I care about and or love is hurting or sad.

I feel sad for people who are suffering.  People with terminal illnesses.  People living in a war or are watching family members being abused or killed.  I feel sad for people who are starving or sick without access to medical care.

I feel sad for all the broken hearts in the world.

My adult son who has a huge place in the center of my heart has suffered many times and he is a young man.   My heart has broken many times for him and for the other young men and women I’ve met through him who I’ve seen suffer.

I feel sad for the lesser injustices, such as my ten-year old friend who wishes for things, such as an end of the school year celebration, but who graciously accepts that her family doesn’t have enough money to celebrate in a way that  a young person might dream about.

Sometimes I care so much it hurts and I don’t even know how to feel such strong feelings.

I felt selfish by the way I was experiencing the particular email from my sister.  The three exclamation marks felt like — well hell, I don’t know what it felt like, but it wasn’t a nice happy feeling.

Maybe I wish family members would take a small interest in  learning a little about Fibromyalgia and Chronic Fatigue Syndrome.  I wish they were able to understand the seriousness of the illness and acknowledge it.

Sometimes I think they are afraid of acknowledging how serious my illness is because if they did, then they might feel some sort of obligation.

I’ve been what you can safely call sick since 2005.  Many of my symptoms were magnified over the past year.   Two accidents and a narcissist had a strong impact on me, my health, and my life.

If folks don’t believe much in fibromyalgia and think the term Chronic Fatigue Syndrome is nothing more than the way they feel after a long day at work, then it isn’t logical to expect these same people to take the term narcissist very seriously either. 

People who don’t believe you are sick when you are, or who may believe it, only they think it’s because of something else, not what you have been diagnosed with and what you know is true, are not showing respect.

Basically, if you don’t have cancer and haven’t been told you’re dying, or if it isn’t an illness people are familiar with or can see, then I believe many people write it off to being psychological.

When I read the email of what I “must do!!!” — I felt a surge of emotions.

What about me I thought? I am aware, as I think many of us with fibromyalgia are, especially since other people will often remind us, that it is not a terminal illness and for this I am certainly grateful.   Should I be more grateful than a healthy person should be?  Aren’t all us who don’t have a terminal illness grateful for that?

Knowing I don’t have a terminal illness indeed offers me a sense of gratitude and feeling gratitude is a healing experience.

There are plenty of days when I feel like this illness is killing me.  I get scared of the future too.  There are days when I’m so tired, so incredibly fatigued, that I feel like the walking dead.

Brain fog and physical fatigue together, plus pain all over my body, even with strong medication, gets me feeling a bit… depressed.

This illness has taken my career and any confidence I  had about future earning potential.  I can’t do a great deal many things that most people take for granted.

My friend, Rose, who has a health blog, Seeking Equilibrium, is too cool.  I shared with her my feelings and she re-wrote the text in the email asking for prayers for people with fibromyalgia.

I wasn’t brave enough to send the revised email, until I got the same email from a cousin, and then saw that the original one came from my other cousin.  I was struck with courage, opened my email, added some recipients and clicked send.

I doubt very seriously if anyone forwarded an email asking for prayers for people with fibromyalgia.  Maybe, but my gut feeling tells me probably not.

My mother came to visit a week or so ago.  She came to help me out a little.  I know she wished I’d had more free time, but I didn’t.   I told her I was trying hard to finish a project and she understands it was important to me.

My mother wanted to have time with me that I simply didn’t have that week.   She wanted us to have a fire outside, but I did not have the energy at the end of the days.  I too wanted this.  I wanted to sit around the fire and see my mother happy, which would have made me feel happy.

“We didn’t get to spend any time together,” she told me after five days of being here.  “I wanted to go to the thrift shop(s).”

I felt guilty.  First of all we had spent time together.  I told her she would be walking into my life as it goes during the week.  I have many ongoing obligations and people don’t realize how much of my time and energy is spent on fulfilling them.

Then too, going to one thrift shop in a day is my limit and even then I can’t stay long.   I can’t walk around a store for more than a few minutes before pain sets in.

Now, I just say I’m sorry to my mother when she wants to go shopping and I’m too tired.   It’s time like this when I feel like a disappointment.

The disappointment isn’t only about her though.  One of my favorite things to do is thrift shopping.   I miss it too.

In pain, fatigue, sadness, grief and loss, I’ve found a few ways to live my life the best way I can — with the knowledge, tools and abilities that I have in this moment.

I recently decided to try a little harder to actually live my life.  I may only get moments in time, but I’m getting them.  I hope those moments will turn into days and weeks.

I’m finding laughter again, which is excellent medicine.  I heard myself laugh today.  The sound of it lingered in my mind for a minute or so.  I liked it.

I’ve gotten several pictures of my son now, smiling again, which seemed lost to the lens of a camera for a long time.  I’m enjoying music again.   I’ve made some new friends.

dancing like a funky chicken is good medicine

funky chicken

I’ve even learned a new dance that my ten-year old friend and I came up with, “The chicken dance,” she calls it, which is easy because when I do it, she and her sister laugh so hard they quickly fall down on the sofa, so it only lasts a second or two at each go.

I’m still tired though.

Click on image for a little history of the chicken, from IconDoIt, the blog.

Image of Gardenlady by, “The Graphics Fairy”.

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Related posts from Dogkisses’s blog:

Without the label of fibromyalgia

Fibromyalgia Misunderstood