Sustenance

I remember a point in my life of "Invisible Illness", when I felt that something needed to change. I was living with chronic pain from a back/hip injury and, despite my prayers, I was not healed. So i changed my prayer. I remember saying to God "If you're not going to heal me, would you please strengthen my frame?" And I continued that prayer for years. I still prayed for healing, but strengthening my frame had become my focus. And He answered my prayer! Then, as the years passed, my RSD spread to all four limbs and multiple joints. Yet, I can tell you (with a grin) that He still strengthened my frame. During those years of worsening, when pain was unbearable and the healing I had long pleaded for had not occurred, I changed my prayer again. I prayed that He would sustain me, because I knew I couldn't make it, otherwise. And, now, I can attest that He has sustained me all these years!

So, tonight,while reading a devotional, I was blessed by the following scripture in Isaiah 46:4:

"Even to your old age and gray hairs
I am he, I am he who will sustain you.
I have made you and I will carry you;
I will sustain you and I will rescue you."

He HAS sustained me... even to my old age and gray hairs!
And, for that, I am truly grateful!!

by Jane Gonzales

A Lonely Life

Once upon a time, in my real life, I had lots and lots of friends. Despite being handicapped, life was full. Even when handicaps grew to the point of disabilities and everything was more of a challenge, there was still an abundance of events to attend and activities to do. But over the years, an alternate life set in. And, strange as it seems, there were levels to (or within) that life. Starting off normal, becoming handicapped, becoming disabled, becoming homebound, then becoming bedbound.

Though I’m very grateful this alternate life occurred over time, rather than all at once, the fact remains it takes a lot of adjusting. And, in that journey, you’re very much alone. No-one is walking in your shoes – and, even those walking alongside you, who likewise grieve your loss, cannot relate to what you experience. And, sadly, the not understanding often leads to abandonment. Not that it’s intentional, but we live in a microwave society that expects quick results. They can’t comprehend (or tolerate) unresolved issues. Chronic pain or lingering illness is unfathomable to most; and would be to us if we weren’t living it. And loss of health is not the only reason for them (or us) to retreat.

Other reasons could be depression that accompanies chronic illness, maybe making us less positive, not seeing the glass half full as much as we had before. Or us not calling them as much as before because there’s nothing new or good to report. Unfortunately, that can be translated to them as a loss of interest. And them not calling us anymore feels like rejection or abandonment. So, for me and countless others, the new reality is lacking someone to visit us or someone to call for a favor. Instead, there’s a host of virtual friends who truly understand what you’re going through and may become treasured friends. Yet, the loss of longtime friendships is painful and the loss of visitors is lonely. I know that everyone’s at a different place in life, and some may not be here yet, just as I was not here yet. But, though it’s taken much time for me to get to this point, I have arrived!

Thankfully, I’m very blessed in so many ways. I have my family, my faith and a couple of friends who, though not nearby, love and support me. I keep myself busy with various projects and enjoy life as much as possible, considering the circumstance. I can’t deny that an invisible life is a lonely life. Lonely being a relative term, you could be at the beginning stage where you can no longer work and are no longer in the mainstream of life. Or, you could be acclimated to being at home and still be receiving visitors. Or, perhaps, you seldom have visitors.

Whatever point each of us is at, we need to be able to entertain or occupy ourselves, rather than expecting others to meet that need. So much is learned from chronic illness, with self-discovery being one of them. Though I would not have chosen this life of illness, neither could I have known that good could come from it. Despite the hardship or trauma of disease, in the end, I suspect that most of us have been made better by what we’ve been through.


by Mary Jane Gonzales

A NOT SO GOOD PLACE

I started noticing, in the last couple of weeks, that I was not my usual self. I couldn’t put my finger on it, but I knew I was “off” somehow. What began as a feeling of heaviness, and grew to the point of anxiety, didn’t make sense to a normally calm person. Not that I never feel “heavy”, but there would have to be a reason for it. And, at the time, the reason eluded me.

As the days passed, and the symptoms grew more pronounced, it became clear to me what was happening. The cause had snuck up on me and caught me off-guard. And then it hit, and everything made sense! I am approaching the five year anniversary of being bed bound!! Just a couple months away, it is coming fast!

In my day to day life, I think I handle it gracefully; meaning “full of (God’s) grace”. Yes, there’s been heaviness at times (especially anniversaries), but not anxiety! And five years is a milestone, monumental to me! Obviously, this is heart wrenching and tears have been shed this week. 

Though I believe in miracles and still hope for healing, truth be told, I consider God sustaining me through RSD/CRPS to be as much a miracle as healing would be. That being said, chronic illness and/or confinement of any kind /the loss of life as you know it, is very traumatic. Depression and tears are inevitable. It’s ok to visit there, but not to live there. ~ For me, "not living there" requires discipline, a balancing act, and a lot of prayer!!

 

by Mary Jane Gonzales 

My Story of Chronic Pain

My life changed years ago, when I got injured from a fall. Then, with ensuing injuries, it changed more and more, as something about my body was suddenly different. The injuries weren't healing properly, the pain was disproportionate to the actual injury and, unlike before, my body had become frail – making me susceptible to more injuries, resulting in more disabilities. All normalcy was lost and that began a downward spiral. Because the injuries weren't healing properly, I was in constant pain, I moved slower, and my movement was limited. I needed assistive devices for walking, for reaching, and pretty much everything.

Bear in mind, throughout this whole ordeal, I did not know what was wrong with me. The doctors had no clue; hence, no diagnosis. To my surprise (and dismay), without a label, there’s no credibility! Many people thought I was faking and, even those who believed me, thought I was exaggerating the pain. One friend, who had committed to driving me to work, suddenly decided after two weeks that she was enabling me. And one family member, who thought I was faking, made my life miserable for years. I know no one can understand the disease or what it’s like, without experiencing it. But understanding it is one thing and believing it is another. Or, more precisely, believing YOU. I now have a good support system among my family and friends, albeit smaller than years past.

Finally, after eighteen years, I was diagnosed with RSDS (Reflex Sympathetic Dystrophy Syndrome), now called CRPS (Chronic Regional Pain Syndrome). There is no cure, as of yet; but research is ongoing and strides are being made every day. Over time, my injuries rendered me unable to work. And, having had this now for 30 years, my life is very confining. I appreciate the abilities I do have and keep very busy. Along with writing books and advocating for awareness of RSDS/CRPS, I enjoy crafting and other hobbies, along with the friendships and support of other Chronic Pain patients I’ve met online.

by Jane Gonzales

Inability

Pain and limitation

Aren’t the things that I detest.

It’s the absence of a life

That I hate most, I confess.

I can reach things with a reacher.

I can even drive a car.

But without accessibility

I can’t get very far.

Like doorsteps with a ridge

That stop me in my tracks.

And public buildings without ramps,

I consider lax.

I know the world has come so far,

Technology and all;

But insight still is needed,

Even at the mall.

 

They make you walk a distance

To their office for wheelchairs.

Don’t they know, if you could walk that far

You wouldn’t need the chair!

And have you seen that escalators

In the mall abound?

But needed elevators

Aren’t easy to be found.

The absence of a livelihood

And inability

To still be self supporting

So distresses me.

 

God, you see within my heart

And you know I’m wearing thin.

Would you strengthen me in spirit

Till a miracle comes in?

Copyright 2002 Mary Jane Gonzales

10 Ways To Support Someone With Chronic Pain

10 Ways To Support Someone With Chronic Pain

What are the most effective ways to help someone you love who lives with Chronic Pain?

Adjusting to an alternate life is challenging, at best, and support is needed in many, different ways. Below are 10 ways to support someone with Chronic Pain:

• First and foremost, believe that their pain and symptoms are real. Be understanding if plans must be canceled at the last minute due to pain.

• Encourage without pushing - While it’s important for them to keep moving, be mindful that they know their body better than anyone and will be cautious of risks.

• Trust their judgment if they say they need to go to the ER (even if they were just there 2 nights ago).

• Attend doctor visits with them to take notes or offer input. Ask questions to learn what you can about their condition, in order to be knowledgeable and helpful.

• Take them places if driving is difficult for them.

• If standing is hard for them, help with grocery shopping. Help with the cooking or have food delivered. Be willing to use paper plates and cups to eliminate dish washing.

• Help them discover new hobbies or forms of entertainment that are within their limited abilities, as this will keep them busy (distracted from pain) and upbeat.

• Build confidence - Don’t let their disabilities overshadow their abilities. As in any relationship, you should focus on someone’s good points, not their bad. The more you esteem them, the better they will feel about themselves.

• Keep stress at a minimum to help prevent flares.

• Pitch in - Donate to research, have fundraisers, participate in events that raise awareness.

September is “National Chronic Pain Awareness Month”. Please join with the Chronic Pain community in raising awareness of their/our condition(s). .