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2020 Gift Guide for Chronic Illness and Disabilities
Happy Holidays! I hope this finds you feeling well and looking forward to many healthy tomorrows 🧡
That’s a common greeting between those of us in the chronic illness community, but after the year the world has experienced, I’m happy to share the same well wishes with every single one of you, with a chronic disease and without.
If you’re shopping for a loved one with a chronic illness this year, long-term illness, or disability, you may feel unsure of their needs, wants and unique daily circumstances. Here are a variety of gift ideas at every price point, with images and links to help you find the perfect gift for your loved one.
These suggestions are appropriate for someone who is mostly confined to their home or uses a walking aid, if applicable. Here are several gift ideas along with advice to help you shop!
*Content is NOT SPONSORED. No affiliate links. These are my unpaid personal opinions and mini reviews, as well as suggestions from our amazing readers.
*Updated for 2020
*Most items are available to be delivered by Christmas
*If you prefer not to read this article in its entirety, then find all gift suggestions are highlighted in blue.
*Also see:
100 Spoonie Gifts: pinterest board
Internet Subscriptions
Streaming video allows your chronic friend to watch movies and television series’ any time, instantly, from anywhere. Especially on those bad days when doing nothing but resting is the best and only option. Distraction therapy like settling in to watch movies and television is the gift of entertainment which they will certainly thank you for. Netflix, Amazon Prime, or Hulu Plus are a few of the most popular video streaming services, and they all cost around $100-$125 per year.
Amazon Prime and Hulu plus subscriptions also allow you access to their new Watch Party features, which allow you to stream movies simultaneously with your friends!
The Amazon Prime subscription also allows access to a wide variety of ebooks, and music, alongside the streaming video service. Amazon Prime’s included 2-day shipping feature is a blessing for anyone who has trouble getting out to the shops. Now that Covid-19 demands that high risk individuals like us stay indoors, Amazon’s fast online delivery is a convenient alternative. In certain areas, Amazon has rolled out Fresh, a grocery delivery service which is a fabulous gift option.
Audible is another of Amazon’s subscription services, and quite a thoughtful gift. If your loved one is like so many of us with chronic illnesses, then reading books becomes a tricky task due to blurry eyes, migraine headaches, brain fog, memory decline, trouble concentrating due to pain, etc. Audio books can make reading enjoyable once again. Actually, Audible is also on my Christmas list!
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My Caregiver Left
Yesterday was my nurse/caregiver’s last day. She’s moving out of state, and is beginning her new life in semi retirement. I’m a bit anxious to find someone to fill her very large shoes, but truly excited for her and her new journey ahead. She has more than earned it after a lifetime of looking after people.
She began her nursing career by working in every single unit in the hospital, but in more recent years, she’s done the highly specialized job of a home healthcare worker. She will take on a patient if her church has been contacted with a special need in the community, but more often, she works in home hospice care. She has a calling for it.
You wouldn’t believe the stories she has told me over the last 2 years!
Like the one about the old man who she realized was in his final moments, so she ran upstairs to get his wife. She encouraged his wife to crawl into the bed with him, and tell him everything she wanted to say to him. His last breath was taken in the arms of the woman he spent his life with, as she whispered her love into his ear.
Another story is the not-so-old man who was fighting so hard to hang on. Finally, she asked his family to gather around his bed and tell him out loud that they were all there, and one by one they told him how much they each loved him. He hadn’t been conscious for some time, but he must have heard them because he let go that night, surrounded by his family.
(She says sometimes at the end, people wait to hear from a particular loved one before they can let go.)
Or the one about the woman who was rushed into the ER after a terrible car accident. Later, she was finally stabilized and unconscious when my nurse was cleaning her up.
Then suddenly the woman sat straight up, with her eyes looking wide in front of her, and said out loud, “Jesus, you’re here!”
Then she fell backward and flat lined.
This is how I see her. There are nurses and birthing coaches whose job is to help give birth to babies, but on the opposite end of life, she is there to help ease terminal individuals out of this world in their own natural time. Kind of beautiful, isn’t it?
She played a very different role in my life, however. She came in to assist me with errands and personal hygeine tasks. For me, it eases some of the stress on me and on my relationships to have a professional who I feel comfortable asking for personal assistance, as well as for the additional things I wouldn’t be inclined to burden someone else with. For example, if I’m feeling nauseous, on a rare occasion, I might ask her for a cup of herbal tea. I wouldn’t ever bother someone else to make me hot tea (literally never), but yesterday, the tea kept me from having to take my anti-nausea medications which sedate me, and it enabled me to eat something.
It might be a small favor from her perspective, but it’s a luxury most people in my position simply do without. I tend to ask for necessities like food, drink, and clothing, and have learned to let most other extras fall to the wayside. If you have someone in your life, whether it’s a spouse, parent, friend, or professional carer who is happy to do the extras on occasion, then you know how special those people are, and how much they care.
I can’t tell you how positive it is for a person’s mental health and well being to be given some options and control back… especially if they’ve had many of their personal freedoms taken, such as by disability or illness.
When she came into my life as a part time carer/helper, she understood what it’s like to be in that “in-between” stage after a divorce, and she also had the benefit of knowing me as a healthy headstrong teenager. When I told her my secret– that I was hoping to move into a nearby apartment/ shared house, she was one of the few people who responded with excitement!
Amazingly, she didn’t ask if I was able, instead she saw it as a matter of making it possible. And then she helped me make it possible!
Together, we spent this entire last year planning, packing, moving, and then finding the right assistive devices to make the apartment accessible and safe. She was far from the only one, of course, but her belief and encouragement have been an incredible driving force and confidence builder.
This year has been such a positive growing time. I’m very glad that I took the leap toward independence, regardless of the obstacles. Looking back on the last 2 years with her, I believe that her timing in my life has been purposeful.
I’m going to miss her friendship the most, but as her friend, I’m so happy she’s having her own big life adventure. Maybe it’s silly but any sadness is being drowned out by the excitement I feel for her.
Now I’m praying for someone new- the right someone to come and lend me a gentle hand.
It can be a daunting prospect, but I’m choosing to trust that whoever it is will be the right person once again.
Thank you for visiting.
Take good and gentle care of yourself,
💙Mary🦋
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A Day in the Life of a CRPS/RSD Sufferer
“In Her Skin”
She hasn’t slept for days. The pain in her leg is like ten million tiny coal miners chipping away at her bone marrow with their axes, sledge hammers and sharp picks.
“When do these little guys ever take a lunch?” she wonders.
They set off fire bombs from the inside of her, destroying chunks of tissue, muscle, and shards of bone. They light the fuses and her nerves shoot like electricity from one end of her leg to the next, causing her to gasp for air.
Her entire leg has become pain. It is no longer a leg. It is no longer her leg. It belongs to a monster. To a disease she does not yet understand.
The limb is only pain and fire and crushing, sawing icicle bone. When she closes her eyes, she cannot picture what the leg looks like. She can only see purple and ice blue with burning fire red. Like a force-field that radiates around the limb, the colors have replaced flesh.
She waits for the sun to rise for her doctor appointment. All night, she recalled her list of symptoms over and over again. She can’t leave anything out this time.
“He has to help me. I have to make him realize what is happening to me. I cannot live like this. I will make him understand.”
***
Five hours later, back in her bed, she is barely conscious now. Sleep still will not come, but her mind is groggy from the pain that drains everything.
Her heart races, body shakes, face tingles and room spins. Ever-present nausea sits like a rock in her belly, and fatigue pulls her limbs down with gravity. But all that she registers is pain.
She feels herself floating away, but the pain in her leg keeps pulling her back. It holds her captive.
She can’t keep her eyes open. Slow tears stream down her face. Flashes of today’s appointment and the last few appointments cut through the fog.
Orthopedic: “I’m sorry to tell you, Complex Regional Pain Syndrome is the most painful condition I’ve ever seen. You are too young to be in this much pain.”
Physical Therapist: “You have to let me touch you. Stop exaggerating so much. You have to try harder…No pain, no gain!”
Neurologist: “I know the spinal injections are painful, but there aren’t many other options.”
General Practitioner: “Pain medication is too hard to prescribe these days. Try this prescription strength Ibuprofen instead.”
***
It’s the middle of the night, and she is in the emergency room screaming and writhing around in agony. Her fiancé rushed her there when he saw her blackened leg, three times the size of the other, and his beautiful, 20-year-old love barely able to form words.
Even in her state, the doctors and nurses look at her with suspicion.
“She has CRPS,” says the fiancé with an obviousness in his voice. He assumes they will understand.
No, CRPS is a condition that the doctors and nurses do not recognize. Her swollen, blackened limb with sores developing around the foot do not remove the look of doubt from the physician’s face.
“She can see someone else for pain medication,” the doctor says, never looking at the girl’s face.
From across the Emergency Room, a nurse rushes over and pulls the doctor aside. After their private discussion, that angel nurse is lead on the team and the shrieking girl is administered medications.
“Don’t stick her with any needles and keep away from this girl’s leg!” directs the angel nurse. She tapes a sign to the bed saying “No sticks. Don’t touch legs.”
After the girl calmed down, the doctor sends her home with a prescription for pain medication and anti-inflammatories. An antibiotic cream was given to address her sores.
***
She finally had some hope. The medication wasn’t helping the pain completely, but she did get a few hours of sleep, finally. She felt more like herself than she had in God knows how long.
Knowing there was a medical professional out there who knew about her condition and cared enough to try to help her was like a window had been opened, and she could breathe again.
Maybe in time she would find a doctor like that nurse. Maybe if someone could help her, maybe she could actually do this.
Then, her mother stormed into her room.
“Your Dad and I have decided we want you out by tomorrow.”
“What’s going on, mom?”
“We know you have been going around trying to get drugs from doctors. After your trip to the ER last night, we know you got a big bottle of pills and we want you out. We won’t have an addict living in our home.”
****
This short story was originally published in 2014 after I was inspired by an amazing young woman I connected with in an online support group. Tragically, this young woman passed away recently due to CRPS, and lack of appropriate medical care. I’m sharing this again to honor her fight, and all of those battling intractable pain. For some of us, humane pain management is life and death.
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Imaginative magic…..
I’m so pleased to share a favorite blog from a friend and fellow chronic pain warrior, “Pain in the Beck.” In the below post, she did me the honor of writing about how we first “met” online ♡ To me, she has been a butterfly emerging from the shell that illness couldn’t hold her in.
Follow PainintheBeck blog as she writes about her life in NYC as an artist, a student, a chronic illness warrior, and shares her adventures with family. You will be rooting for her, and you’ll be inspired to root more and more for yourself because of her.(Read article in full at the link below.) Thank you for reading and following.
Every day is is Hope Day here at a Body of Hope blog, but every Wednesday is #HopeDay all around the web. Spread that good stuff around 🙂
Hello friends!
I’ve been busy these last few days, trying to help my daughter get ready for her high school prom. Although I still can’t believe that she’s done with this chapter, I’m very excited to see what’s next.
We attended her final high school concert last Friday evening. It was fantastic. The students performed music, danced, sang. It was a fun night. And I got some costume ideas out of it. The best, however, was seeing our gal, on the stage singing “Rebel Rebel,” with her class band as backup. This, while playing the electric ukulele.
My husband has been a musician for most of his life. Our daughter, however, never played an instrument until high school. In a mandatory freshman class, she started with guitar. The expression, “like a fish to water” comes to mind. After exceeding the complexity of the class, she taught herself advanced skills…
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Discussing Chronic Illness & Disability Globally
Are you in a heat wave? It seems the entire country is encountering record high’s this week. Our AC has been pushing so hard that it shut down! It got ugly in here, but thankfully, it wasn’t out for long.
Just the short spell of overheating, and increased pain gave me a better appreciation for the privilege of air conditioning. Things which are so commonplace to us in this part of the world, are luxuries to others who don’t have the same amenities.
That’s something I’ve been considering more and more in regard to health.
Not that we should compare ourselves to anyone else, but it can be valuable to approach your life from a different lens now and then.
So, I share my own perspectives with you in the hope it encourages you in your life as so many of you have encouraged me.
So many are dying globally from diseases that can be managed, even treated successfully. I can’t even imagine living the life I’ve been handed in an area where water is miles away, let alone a doctor. But there are children, teens, women, and men who do these same battles each day armed with so much less.
It breaks my heart to think about how people go on living in the same unimaginable pain, and try to accept these very same conditions without the hope of treatment so many of us have here. But, I imagine their lives aren’t built around doctors, medications, and treatments, but instead, seeking to find more meaning behind the curtain of life.
In my reality, it’s easy to fall into depression over the people and life opportunities that I’ve lost in the wake of illness.
Grief is an important part of processing major life changes. There’s nothing wrong with sadness and sorrow. Self loathing and hating my life, however would be.
Still, I struggle with feelings of hopelessness, as is common for all of us fighting chronic pain and rare diseases. As if our bodies aren’t suffering enough, we can suffer just as much in mind and spirit.
I suppose that’s why the mission of seeking out hope is so meaningful to me. I know we don’t always have the strength to find hope for ourselves; our lives at times appear devoid of all light. That’s why I wanted this to be a place anyone could reach out and find it when needed.
A short online course on the history of disability last month had quite an impact on me. Individuals from India, Japan, China, Africa, Australia and the UK shared their personal experiences living with various impairments.
Around the world, people like myself are viewed as cursed, and are disowned by society. Many believe their conditions were brought on by sins from their past lives, or they believe they are being punished for wrongs done by their ancestors. In many parts of the world, society sees disability as contagious- even demonic. It’s not uncommon for disabled children to live on the street, or to be “put away” in facilities for life. We have a shameful history of treating our disabled brethren in a less than dignified manner here in the states as well.
I think of my own faith and how it has shaped my experience through this journey. Jesus was never afraid of being seen around sickness, disability, poverty, or with the people who had been most marginalized. He put a spotlight on the parts of society which had been ignored. He didn’t run away, He ran toward people who were suffering.
I’m not the young woman I was 13 years ago- I’ve been changed by this journey.
There’s always a new version of us that emerges from the flames of adversity; we have to get to know ourselves again and what each new chapter of life will bring next.
I know having multiple rare diseases isn’t a life anyone anywhere would wish for.
Yet, this is my one life, and I’m tasked with finding a way to make the most of the days I have. That challenge to myself can seem impossible, but I’ve become convinced that the fight is worth it. My life is worth fighting for.
And so is yours.
*******
Below is more information about our disabled brothers and sisters around the globe.
-Today in the United States, chronic pain patients are often denied treatment, especially if their condition responds best to opioid pain medication.
-In Japan, women were forced to terminate their pregnancies if the baby was found to have an abnormality. (This law was abolished as recently as 1995.)
-In China, disabled individuals are depicted on tv like side shows which doesn’t translate easily for disabled individuals living in society.
Concerning statistics.
- 70 million people need a wheelchair, but only 10% have access to one
- 360 million people have significant hearing loss, but less than 10% of people who need hearing aids have access to them.
- 93 million children worldwide have moderate or severe disability
Mental Illnesses are on the rise worldwide.
- Depression: 300 million people
- Bipolar affective disorder: 60 million
- Schizophrenia & other psychotic disorders: 21 million
Chronic Illness has become a worldwide epidemic.
- 300 million people live with Rare Diseases (1/2 are children).
- Chronic Pain effects 1.5 Billion people around the world.
- It’s estimated that 60% of the world’s population has at least one chronic illness (highest percentages in developing countries).
See World Health Organization and NORD (National Organization for Rare Diseases) to read more.
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To Survivors of Depression, Chronic Illness, Mental Illness, & Trauma
*trigger warning*
If you’ve been hit hard by suicides in the news this week, you are not alone. It’s crushing to learn that these two incredible artists have chosen to end their lives.
I don’t doubt that Anthony Bourdain was influenced by the passing of Kate Spade’s suicide just days prior. Kade Spade was influenced by Robin William’s death, according to Kate’s sister. Now, while it’s a common topic of conversation, address these issues with your friends and family so that together we can help end this pattern, spread awareness, shed light on issues that most often stay buried in darkness, and forever stop people from calling suicide “selfish” ever again.
Sharing our prayers and thoughts for their families and loved ones now.
Sometimes life feels impossible to carry on. Sometimes you feel there are NO OTHER logical options. Sometimes suffering is our only reality, and there appears to be no end in sight.
In depression or in suffering, your feelings lie to you until your own inner compass is off course. When your own thoughts and emotions are steering you into a storm, lean on facts as your anchor instead, or the lies of depression and pain can sweep you away.
Facts:
-Things will change even when your mind tells you that nothing will ever be different.
-YOU MATTER, even if your thoughts tell you that you’re worthless right now.
-The world is BETTER OFF because you’re in it .
-Your life has purpose, even if you can’t always clearly see what that meaning is.
-You are lovable.
-You are loving.
-You are an important influence on people’s lives even if that doesn’t feel real to you today.
-You are MEANT TO BE here.
Depression can decieve you until you can’t even trust your own emotions. What might make sense to you one day, can be like the thoughts of a stranger on another day.
Depression isn’t only caused by mental illness, it can be caused by grief, by loss, by chronic pain, by trauma, by changes in your health, by a vitamin deficiency, by evironmental changes, or even small changes in your diet.
It can be a slow spiral, and sometimes you may not realize you’re living with depression until your brain has been lying to you for so long that one day you look around and feel trapped in your own story.
If you believe you might be losing control of your life, and worthlessness is heavy on your shoulders, please make an appointment to talk to your doctor asap.
Together you can create a plan to help you get on a path BACK TO YOURSELF.
*Your life is worth fighting for.
To talk to someone immediately, call your state’s Behavioral Health Department hotline to speak with a professional therapist day or night.
There is always hope, that’s a fact ❤
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“Shape me Yet Anew” Poem by Mary Jane Gonzales
SHAPE ME YET ANEW
Father God, I pray
That you would shape me yet anew,
As this pot is cracked and broken
And un-beautiful to you.
Lord, I feel as if you’ve started
With a fresh supply of clay
And I’m spinning on the wheel
And my life’s begun to sway.
When you’ve shaped me in your image
And you put me in the kiln,
In the furnace of affliction
To be set and processed still,
Let the outcome be for glory,
Let on-lookers stop and gasp.
“How did He make this from nothing?”
Let the people stop and ask.
Let the beauty draw attention
To the artist and His work.
Give me beauty and a purpose, Lord,
Of which I would not shirk.
As it is with real life pottery,
A pitcher or a vase,
Make me useful to the Master
In the setting where I’m placed.
-Mary Jane Gonzales
JEREMIAH 18:4 (NIV)
But the pot he was shaping from the clay was marred in his hands; so the potter formed it into another pot, shaping it as seemed best to him.
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A Voice Unheard: Author Interview with Chronic Pain advocate, Jane Gonzales
I am so happy to welcome, author, poet, blogger, and advocate for the chronic pain community, Mary Jane Gonzales!
I was given the great honor of being asked to contribute a piece for her book, A Voice Unheard. After reading it in its entirety, I immediately asked Ms. Gonzales for an interview! I know it will impact every reader, disabled and abled alike.
Congratulations on publishing your 10th book, A Voice Unheard.
You have very generously allowed your powerful poetry to be shared here on a Body of Hope in the past, but this is your first interview here. I’m excited! Shall we begin?
1. Did you do anything special to celebrate your 10th book release? or Do you have a traditional book completion ritual?
Well, it’s funny you would ask, because you had asked me that previously and my answer was no (I wasn’t planning anything special). But it started me thinking that this is a special time that will never come again. So, with your inspiration, I decided to have an event on Facebook. As to a “traditional book completion ritual”, my response would be “breathe”!
2. How long have you been living with chronic illness? Would you mind sharing a little about your diagnosis?
This summer will be thirty-one years that I’ve had RSD, but it was undiagnosed for eighteen years.
3. Aside from writing, what do you enjoy doing in your free time?
My pastimes would be reading, writing and crafting (especially, card making and scrap booking).
4. It’s clear you have a talent for soul stirring, magnetic writing, but why are you passionate to write for the chronic illness audience?
Because that’s where I live; in a community with others like me, who understand me and don’t see me as “different” or “weird”. Plus, I want them/ others to know they are not alone and they are not crazy, which is how this syndrome can make you feel.
5. How was compiling A Voice Unheard different from writing a book like In the Blink of an Eye?
Well In the Blink of An Eye was a personal memoir written about me, and A Voice Unheard was written about a community/ involving members of the community. I found that to be a bit scary, actually.
Another difference between the two is that, when I wrote In the Blink of An Eye, I had already dealt with the issues and was reconciled to the situation. But that was not the case for where I was at when I wrote A Voice Unheard. And, for that reason, I couldn’t do it justice. I had the inspiration but I couldn’t write it in a way that would honor God. Therefore, it took me a year to write it, which is ironic because it’s one of my shortest books. Compiling the stories was easy and exciting because every story fit perfectly with what I myself had written. When that happens, you know it was meant to be!
Another difference would be that every book I had written prior had the stories first; then, the chapter titles later. With A Voice Unheard, all the chapter titles were inspired first and the stories came later.
6. How would you describe your personal writing process?
(For example, are you research driven, logistic, intuitive, spiritually moved, or other. Please explain.)
I think I’m all of these things to a degree, but, above all, spiritually moved. I can’t just pick a topic to write about. I have to be inspired, in order to write.
7. What is your favorite part of being an author?
My favorite part of being an author is the feeling I get when the inspiration is flowing. I also enjoy editing, which is probably an understatement, since I’m drawn/gravitate to it.
What is your least favorite part of being an author?
My least favorite part is marketing i.e. self promotion.
8. In your new book, you described the world we live in today as “a microwave society.” This is a great terminology! For those who haven’t yet read your book, can you explain your meaning, and how this current mentality effects chronic illness survivors and our loved ones?
What I meant was, in our society, we want everything quick. We don’t want to wait for anything. So if someone gets sick or injured, and it continues, there’s no patience or tolerance for a lack of healing.
9. In A Voice Unheard, you share very personal accounts from fellow chronic illness sufferers. Why did you go out of your way to bring these stories into the light?
Because they need to be told!
10. In your new book, you cover practical but serious topics such as the importance of quality care giving, which you are always a strong advocate for, and you discuss hot-button subjects like pain management. Why did you feel this book was important to write now?
Because I feel the issues are critical and what’s happening is wrong. It’s one thing to have a problem, it’s another thing to have no voice, no say in the situation.
I wrote it now because I couldn’t be silent anymore.
11. Other than those who live with chronic pain and chronic illness, who else do you hope reads A Voice Unheard, and why?
I hope it is read by all. The disabled, to feel supported. The abled, to be made aware. Ultimately, to make a difference.
A Voice Unheard is available for your Nook, tablet, or download as PDF ebook at Smashwords.
Interview was first published April, 2016
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Life Reimagined: Four Years after RSD/ CRPS, by Rikki Lynn
Four Years After RSD/CRPS
Guest Post by Rikki Lynn
So, Life has become this thing that I now bargain with on a constant basis. Most people do that, I believe. We all say, “Well, if I go to the gym today I won’t have to feel guilty about the ice cream I had after dinner last night”, or “If I take the kids to pizza tonight, I can feel okay leaving them with the sitter tomorrow while I’m at the baby shower for the new co-worker I’m trying to befriend.” So it goes, one long life of never ending compromises. Only mine looks a little different.
If I grocery shop today, then tomorrow I can rest and the following day I can go to lunch with a friend, stop and get those few things from the store, and maybe get a case of water from Costco if my feet don’t hurt. Then, if by the end of the week, I’m feeling okay, I can try to accomplish the other errands I might still need to get done.
A full day out running a few errands can quickly end any future plans for the week if I don’t take a rest day between, or make time for healing foot soaks, and be very strict on making sure I’m taking my supplements.
Far gone are the long days of running around accomplishing an entire list of things and still preparing a hot meal and going strong until bed time and still getting up to do it all again the next day, and the next, and the next. That is no longer my life. I miss that life. So many friends think, “Oh, what I wouldn’t give to not have to work” …… I promise if you are one of my friends who thinks that, you would not give what I have given to not work. The cost is way too high a price to pay. I’d gladly work in exchange for a life I can enjoy and one I can dictate my daily routine and plans for.
Alas, things are what they are, and life is what it is, and so the story goes…make the best of it. We hear that often, don’t we? But what does that look like, in practice, in real life, played out?
What can that look like in your life?
Suffering doesn’t always have to be ugly. You can make it sparkly, and it can have its days where it even feels pretty. You don’t believe me, I know. I didn’t believe me either when I told myself I didn’t have to suffer the way I was. I have a knack for proving people wrong though, including myself. I’m stubborn like that.
It’s definitely a forced different way to look at life now. Since nothing is the same, nothing’s the same…. so I’m trying to adapt so that not everything is stolen away. I’m trying to find ways to be flexible in the life I’m left with and rearranging things to fit my new life.
I’m adjusting, and instead of saying ‘no’ to everything …I’m trying my darndest to find new ways to say “maybe” and get creative because “maybe”, just maybe, I can say yes to a few of those things. I’m so dang tired of saying no to everything I once said yes to. Before you think I’m suggesting everyone or anyone can just ‘do’ all the things we once could, or that any given day we can accomplish these triumphs, I’m not… but once in a while finding creative solutions to things that are bothersome can become things that are fun!!
So here are a few thoughts to share, just to give you an idea of what I’ve been talking to myself about recently.
I do some things already on a regular basis like curling my hair or putting makeup on about once a week before my Mister comes home from work so he is greeted with a ‘done up’ woman who looks nice for him. I enjoy that feeling. I am so keenly aware that many of us can not always do this type of thing by ourselves however, and would need help to do our own hair or makeup because of the location of our injury/damage. Well, let’s think creatively…
How about a girl’s night with girlfriends- one of them could host a ‘make up party’ giving each other facials or doing nails and toes (or whatever you prefer). Someone else can bring treats, ask one to do the arranging and invites, then all you have to do is be present. There are so many types of get-togethers for men and women alike. Party games or activities can be planned, it can be in a house as low-key or action packed as you would want. Everyone can be included to whatever degree fits for them. Often a great source of ideas is Pinterest or Google search baby shower, bridal shower, and party games for adults.
I truly believe this is an important thing that we should try to do on a regular basis. And I’ve always had that one friend who absolutely loves to entertain, don’t you? It really goes way beyond that.
It’s good to let friends feel like there is something they can do to help, because they often feel like you suffer, but they can’t fix it, or offer any solutions. Involving them in something positive they can do for you actually allows them how to add a meaningful gesture, and that means more to everyone involved. You see, so many of us with chronic pain get stuck being left out of outside activities and eventually left out altogether because people don’t think we can or want to do things and often they are right. We’d say ‘no’ anyhow even if they asked. So, they quit asking us. Our friends feel like they can’t fix our pain, so they feel a sense of ‘helplessness’ that leaves them feeling bad when they are around us. That isn’t our fault obviously, but really it isn’t their fault either. It is human nature to want to solve problems or avoid them. Let’s face it, chronic pain is a problem. At least it feels like one to most people who have to live with it in their life in any capacity at all, even at a distance. People tend to avoid what they don’t know how to fix. We tend to feel neglected, and then rejected, and then hurt, and then angry. The whole thing is more of a misunderstanding than it is an actual problem that can not be solved. We can give our friends tools to be involved and active in our new lives, but WE have to be the ones to say what we need from them, exactly how it should look, and we should not expect it all to be ‘a pain in the butt’ as it were. WE, as chronic pain patients, need to (yes I know I hate it too) do one more thing to add to our never ending list of ways we have to change our lives, but we must make a mental note to give our friends and family the opportunity to create fun and memorable moments in our lives. We can do that. Even if we can not get out of bed, they can come and sing for us, read poetry, paint for us, show us pictures of things outside they saw during the week, tell us about their week…but not the boring stuff…ask about random things! Have them do a mental note to seek out certain things for you while they are out- like how many times did they see something with an elephant on it? (Or whatever your favorite animal might be.) Maybe ask them to try to notice if they see it and keep track of where they were and how many times and to snap pics if they have the chance to…. it becomes a way for them to connect to you from where they are and for them to remember that they have the chance to bring you into their day and to bring their day to you at the chance when you get together they can share those moments and hopefully share what they thought about at the moment. Maybe you set out certain goals for certain friends that you know will help them do something fun for themselves that you know they might not do otherwise but you push them to do because you can’t do it…so you become their reason and you live vicariously through them…not as fun I know, but how great to be an inspiration to another human. Maybe you just sit on a blanket in your back yard with your pet and you talk about the things you wish you had done with your life while you had your health, and you figure out if there is an alternative way to do something similar to any of those things from a different vantage point-or in a different capacity than you once had imagined.
Life is all about the art of being flexible and adapting to whatever comes our way. We surely got dealt a hand that doesn’t look the way we wanted it to, some of us can’t even use our hands anymore at all….mine are much more painful than they once were but still useful to a degree at least for now. My attitude, my will, my mind, my nerve, my grit, my relentless pursuit of life, those are all things that this pain can not take from me without my consent. I will not give it. I will continue to find ways to bring life to my door, to barter with my body for one more day and find a way to love this life despite the pain. For me, life is about living it with my arms wide open. Some days I can hardly lift my arms and every great once in a while I can dance …. I choose to celebrate the days I can dance and to plan for the next one that comes along, hoping I can wear heels 😉 I choose to be that kinda’ girl. We can do this- together, we can find ways to cope, to manage, to lift each other up, to share a smile across the miles, to learn from one another, to gain new tools that help us manage better, to be there for each other in the hardest, darkest moments.
WE can do this because WE ARE WARRIORS and we will not go down without a fight!
Part of that fight might be a pajama party with a pillow fight and ‘The Notebook’ on the tv, and it may even be in the middle of the day if it needs to be- only one other friend there if that’s what it takes. We have to find those moments.
Make life come to you if you can’t go to it.
Don’t feel like you have to lose your life because you have to say no to things. Find things to say YES to…and create things you can get your friends to say YES to as well ❤
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This is the 3rd year Rikki has shared her experience with us. Read her thoughts in her first year after diagnosis here in “Broken things can be Fixed”. As her life changed due to CRPS/RSD, you can read how she changed with it in her second submission here in “Flow like Water”. Rikki has been so generous to share her heart with us, allowing us insight into her ever-evolving life as she learns and grows through CRPS/RSD. Each post is insightful on its own, but I encourage you to take the time to read all three as a trilogy. Thank you so much for sharing your beautiful soul with us, Rikki! It is always my privilege to feature your work!
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Going Dim by Cammie LaValle, A CRPS Story, Part 1
Going Dim
Part I of II- By guest writer Cammie LaValle, 2016
(trigger warning)
- Photos of Cammie taken on the same day.
Remember that light inside of you that used to shine? We reminisce about it in our heads; back to that person we used to be. That silent yet screaming conversation in our minds we have on a daily basis. For some, it’s the majority of the actual conversing we do and sadly, it’s only with ourselves. We are feeling ourselves; our internal light- the fire that once helped us accomplish so many things in life, is now reduced to less than a flame, more like a sad, almost non-existent spark which could barely keep a match lit.
Sure, there are flickers of hope and tiny little fires at times; but personally, they are getting few and far between. I have not given up all hope, but I am struggling to keep the grasp.
One of my motto’s is “Let Your Soul Shine” taken from a song. How hypocritical of me to tell others to do just that when I am watching, feeling and experiencing my own go darker and darker every day. I don’t mean dark as in evil, although I will admit I’ve had some pretty evil scenarios which I wish would play out in the lives of some of the doctors I have encountered in the last few years. No, I would not harm anyone; but as you read that, I am certain you can recall one of those thoughts that has played out in your mind so detailed as though you were actually plotting a dismemberment. I for one thought a log-splitter would suffice.
As I am writing this, I have backspaced hundreds of times thinking what I have to say or what I feel is not ready to be heard or will be perceived as seeking pity, over reacting, not being thankful for what I do have or God forbid, the “It could be worse” reaction we often get. Yes, we all comprehend that, but more often than not, it is far from a supportive statement as we perceive it. Minimizing our hell is what most of us feel; even though we know most of you mean well when it’s said. But I realized the words I put down, if were written by someone else and read by me, are exactly the words I would need to hear; and yearn to hear.
So without a hesitant mind, and the pain jolting through my body and hands, I shall spill the complete ugly truth that I am not shining by any means. I’ve gone dim. This is not news to some; as they know me too well to believe the crap that spews out of my mouth when I say “I’m fine.”
I ask myself daily, how much more can I handle? Do I even want to for that matter? Yes, those thoughts are there when in my dimmest hours. Will I say it out loud? Probably not. Will I say it here, when I know others just like me are reading this; yes, yes I will. I can’t say I am proud of my thoughts, but I can say I am not about to blow sunshine up anyone’s ass; especially knowing the people reading this are struggling right along with me. That’s not what we need and I may very well do it to others so they don’t have to worry about me, but I will not do it to you. I know that sounds terrible as I have more than likely never met or ever will meet 99.999 % of you. Why be truthful to people I don’t know and hide and lie to my own family and friends? I have no clue the rationale behind this and won’t pretend I do either. What I do know is that there is a greater chance those reading this, understand it to their core and need no explanation of the words, the thoughts, the expressions, the pain, the isolation, the self-doubt, and the meaning behind “Going Dim”. I fully understand all humans go through struggles in life and I am not discounting any of that; anyone or any struggle of any kind. I am addressing our struggle.
I am opening up my broken spirit and soul, my tired mind, and using my pain riddled body, to let YOU know, you are far from alone in this battle. And I may be writing what you can’t dare to say out loud, but feel it as if it has taken over your entire being. I know I have read some stories which after the first sentence I felt the lump in my throat. I certainly am not sharing to cause distress or any tears, but if anyone reading this has that lump, let yourself feel the emotion and release some of that internal pain that is eating you alive and has taken over a portion of your soul.
More than likely you have caught on that I have not begun to describe the pain. If you are reading this, you already know how it will read. However, for those friends or family that are reading this who have a loved one suffering, I will follow this with a brutal truth that the one you know, who is suffering, is too damn scared to tell you. Whether it be pride, or wanting the world to believe we can handle this, or the complete farce we muster up in order to appear stronger than we actually feel. Your loved one has gone dim. And you might have as well; attempting to care for them. Addressing the other side of this is just as important as addressing ourselves.
The ME I once was, is still seen by my husband and some family and friends; however, I don’t see her. I feel as if she’s gone for good. I talk with her in my mind and actually pray she will come back, somehow, some way. She could light up a room (from what I was told). She was vibrant, funny, witty, intelligent, strong, hard-working, worthy, helpful, selfless, and although some deep down pain existed as we all have and hide; she was happy. She helped raise 2 children, who she loves. She was a good wife, a good friend, a reliable sister and had worked since a very young age; worked her ass off. Now, the relentless quest for her to return has come up empty. She was me. I was her. We’ve both gone dim.
Where did she go? CRPS (full body), Fibromyalgia in addition about a dozen other health issues; some quite severe, has held her captive and the ransom demand at this time cannot be met. The hope and flicker of light is diminishing. Sure, I say I am hopeful and staying positive, but who am I kidding? It’s gradually becoming such a farce, I can barely hold back the tears when I say I am still positive. It’s a blatant lie. I feel as if I am getting a very real glimpse of Hell.
Ice pick, razor blade, vice, hammer, pins, needles, knife, match, truck, salt, gasoline, fire, electric shock and flames; all of which I feel has been used during this captivity. A scene from a mysterious attempted murder movie in which we wait in the trunk to be rescued. Someone on the outside may not comprehend that comparison, but I, along with so many others; truly feel this. And the trunk is our lives at times. That dim, cold, dark, isolated place, we don’t willingly go to, but find ourselves there, stuck; more often than not. The tools used is what we compare our pain to; as CRPS/RSD plays out such a brutal attack on our bodies daily. As we wait for the ransom, which in our lives is a doctor, a treatment, a cure, we succumb to this attack and 24/7 try to prepare ourselves for the next dreadful blow. I try to hold it in as to not be a burden; not wanting people to see how bad it is. There are times it just comes out, screaming, howling, paralyzing pain to the point I can barely breathe. Arms, legs, feet, back, hips, face, ears, chest pain where it feels like I am having a heart attack, but I know I am not. Then I think, what if I do have a heart attack? If I feel like that daily, if I have one, will I even know? And my hypertension gets so out of control, my neck feels like I am being stabbed, my vision gets blurry, I lose minutes and have lost recollection of hours of time. I get scared to be alone in my own home. This scares the sh*t out of me! On nights the blood pressure is too high and the chest pain is severe, I am too damn scared to go to sleep as I honestly wonder if I will wake up. Yes, that is how my mind works. I pray I wake up. I won’t go into the thoughts and prayers that go on, when I honestly question if my life, as I know it, is actually ending that evening. This is brutally honest and I know it sounds far-fetched to some. But, many reading this feel the same way or have felt the same way. I am saying it now, to give you some peace of mind that you are far from alone. It is not by any means a healthy way of thinking, but it is where one’s mind tends to go at times. I am not proud of these thoughts, but they are true.
Pain changes people. It’s relentless. The beast wins in those moments and all I can do is wait for it to let go of its ever so tight grip of my body. I think to myself during these times, how the hell am I to live this way? How is my husband to live this way, with his wife being consumed by pain, lost herself and her feeling of self-worth? I am not the woman he married. Far, far from it. He is my biggest advocate and has not left my side, although I wouldn’t blame him. His wife is gone. The anxiety, stress and depression that goes along with this beast leads my mind to wonder “when” he will have had enough; not “if”. For better or worse, sickness and in health, meant something to him, just as it did and does to me. How lucky am I to have such a man who took his vows so serious, that as he watches his wife diminish and change into someone he didn’t marry, he continues to assure me we are in this together and he will never leave my side. He is the only one who can make these demons stop in my head. He is the only one who has seen it all and still has faith I will come out of it; come back as the woman he married; come back from “Going Dim”.
What has brought you to this page, is why many of you will understand what I am about to say next. You are dim yourself from disease and pain or you are caring for someone and are desperately trying to find a way to understand and help that person; your loved one. (For those seeking help to care for another – THANK YOU! Sadly enough, you may be the only one doing so for that lost screaming soul).
Too many are left alone and instead of having support in waiting for that ransom, they remain in the trunk; dim, isolated, begging for relief, kicking and screaming to get out; get help and for someone to actually listen. When there is never a response, those broken souls take it upon themselves to put an end to their private mysterious movie which is their life. They don’t think they can handle the next blow, they have been disregarded by doctors, family, friends and in their mind; the world.
Pain messes with your mind. Even those who truly have support; at times feel like an overwhelming burden to everyone, isolated and alone (even if the room is filled with 20 people) and misunderstood, they would rather not be on this earth for one more second of pain or one more feeling of being dismissed by a friend or loved one. That emotional pain alone when one’s suffering is dismissed; as if we are over-reacting to a common cold; could and has triggered people in pain to start planning their demise, as it is too much for them in their broken mind and body to fight anymore. Death, in their mind, however wrong one deems that thought process; is what they are contemplating. If you think this is reaching; just read through posts in some of your or your loved one’s support groups.
Daily, I see people tell people they never met, that they “can’t handle it anymore”, “I just want to end it”. Keep in mind, if you look at their FB page, or Twitter, or recall a recent phone call, most would have just said or posted on how great their day was. “I am fine.” It’s a farce, which most of us continue to do; as to not upset our family or friends with our true feelings and pain, or to not be honest with people we actually know because we’ve been dismissed too many times and are broken to the point that some knowingly make a decision to NEVER again speak to a loved one, hug a family member; and even their own children; as their mind has told them it’s easier to die than live.
How sad is that? Are they selfish? When people take their lives due to pain, any type of pain; they cannot comprehend the ramifications other than they no longer will have pain. So completely torn down, the thought their child will lose their parent, is not strong enough to stop them. How in the hell is our society missing this? How are family and friends missing this? How are people in pain getting to this point? Whether it be lack of treatment, lack of cure, lack of support or the mind games played out in your head when your pain takes over your life; it must, meaning right now, start being addressed.
Are you thinking your life is not worth it anymore? Well, it is. You don’t see it, but others do. And I beg anyone reading this, to reach out to someone. I can almost guarantee these thoughts have gradually entered the minds of your loved one who experiences 24/7 pain; not remembering a day without it. And if someone asks you, be honest. I have uttered the words I’m fine for the majority of my life; over half of which has been in chronic pain. I hid so many things from even my family; out of pride and factors which stem from my childhood, some of my own family do not believe I am in such a state of despair and pain; broken down with a tired soul and body that feels useless. I hid for too long. Yes, it’s my fault for putting on the mask. I was and at times still very good at it. A habit very hard to break.
It’s natural for me to pretend I am okay; for I’ve done it all my life in one way or another just like most of humanity in some aspect. However, I am removing it now and so should you. This does not give us the right to become an un-consolable hot mess of a person; but it does give us power to deal with what is behind the mask; our true selves. It certainly will not be easy, but how worn out are you right now reading this? My soul is tired and there is no amount of sleep in which can awaken it.
“Live without living?” What does that mean? If you ask that question, you have yet to comprehend how our minds work; how we feel & what this has done to us. Or better said, what it has done with the person we once were. The reason I; we’ve gone dim. We strive to live better and we do anything and everything to get there. Find relief, find a new normal, find peace, find understanding, find faith, find God, find a way; find ourselves. I am trying and I have resorted to begging at times just to get a doctor to listen to me. Most ignore it; but I’ve been lucky to find one that listened; one who upheld his oath. One who has promised to help me find a way, a new normal, and a treatment in which I can maybe, just maybe, have a chance at finding myself again. I don’t trust many, but trusted him and have for over 10 years. Due to this trust and mutual respect between a doctor and a patient, I have a chance; a slight flicker of light in my dim world which I am grasping onto so tight, if I were to let go I feel as if I would crumble; again.
You see, although I’ve gone dim like many of you reading this, I also found HOPE and it was due to raising some hell and advocating for myself and not shutting up when I was told NO. I kept going, I kept calling, I kept writing; I kept fighting. I am still dim, but I have seen the flicker of light; that same light which could let “My Soul Shine”. I don’t know if it will, but I’ll be damned if I’m not going to try. I deserve it; as do you.
I started writing this 8 months ago. When I started, I was in my darkest times. I thought about deleting those parts; but that would be me lying to you, and again, as life has taught me, continue to pretend I am okay when I am not. So I hope when you started reading, you felt you were no longer alone in the pain, the dark thoughts, the hopelessness, sadness and you knew, in your heart and soul, there are others like you. And as you read on, you found understanding, a bond with someone you probably will never meet. A bond due to pain, no one wants, but one everyone needs so they don’t feel alone and don’t ever think tomorrow is not worth waking up to.
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I’m honored to share this project by chronic illness activist, guest writer Cammie LaValle, featured for CRPS/RSD Awareness Month. She’s not only a personal friend I met in the chronic pain community, but she’s a personal inspiration to me as well as so many others. She leads the charge in fighting campaigns for chronic pain and rare disease causes with the tenacity like none I’ve seen before, whilst attacking her disease with the same vigor. I’m proud to be in the same warrior club with a woman like Cammie, as I have learned much from her. Read more RSD/CRPS articles, see art projects, poems, and survival stories here. Talk to others with CRPS/RSD here. Article originally published in 2016.
Thank you for visiting and sharing, -Mary
aBodyofHope 