Category Archives: Bed Bound
November is Caregiver Awareness Month, when we honor the people in our support system. Three years ago, on this blog, @aBodyofHope named November 13th, Caregiver Appreciation Day, otherwise known as Supporter Appreciation Day!
On this day, we can reflect on the ways people around us make life a little bit brighter!
It’s rare to find those who care, even after tragedy strikes. In crisis, our circles tend to thin out, and only the very special remain in our lives, trying to fight along with us. We try to convey how much we care as often as we can, but words can feel inadequate at times to express what their presence means. A sweet little reminder always helps to drive the point home! 🙂
Your support system may include a friend, your spouse, a family member, a physician, a home care nurse, a neighbor, an online support group, or people from your church. How touched they’ll be when they’re sent this surprise from you!
Consider the small and big ways they bring light into your world. Share one of these specially made images to convey your gratitude.
Because of my personal losses in the last couple years, I didn’t know if I could continue doing this campaign each November. In time however, the people who remained in my life cheering me forward, reminding me of my strength, now appear sweeter and stronger than ever. More than anything, I wish I didn’t need any help at all because giving is simply easier than recieving… It’s such a learning curve, but I try to be more grateful than guilty as much as possible. Any way to inject more kindness and smiles into this world is something I want to fight for. I hope you will help spread the word!
If you are a caregiver to someone with a chronic or terminal illness, if you’re in the support system of a loved one with mental illness, or if you are supporting someone going through a major crisis, this is a reminder how much you matter. We can’t run away from the hands we’ve been dealt. You might have that choice, yet you’ve chosen to stay and fight along side your loved one. You lend your own emotional, physical, or mental strength at times. Someone like you is so very rare. Thank you for being you!
This collection was created as a collaboration between charcoal artist, CRPS and Mast Cell Activation Syndrome sufferer, Robyn Triscari and myself as a gift to you! Robyn wanted to give the chronic illness community a way to thank our supporters and “champions” so we worked together on this year’s Supporter Appreciation Day! Thank you, Robyn for your generous idea, and for sharing your artistic talents!
To my readers: It’s so meaningful to me that you follow this page, leave such encouraging comments, and share these messages with your friends. I treasure your readership and continue to pray for you. You challenge yourselves to learn all you possibly can from your lives, and your comments continue to challenge me. You make my world so much brighter, and bigger! I want to thank you on this supporter appreciation day for your impact on my life!
You may save these images to your phone or computer, share them with your loved ones on social media, and we would love for you to print them if you’d like to frame one as a gift or send as a special card.
We encourage you to include your own personal message of thanks along with it.
If you have a “champion” in your life, someone cheering you forward, this is the perfect occasion to say, you’re the best.
We hope you will help us pass on the Caregiver Appreciation Day message!
For your convenience, I have also made these images available to share individually from the Facebook page, https://www.facebook.com/groups/chronically.inspired
Please share in comments who you are appreciating today!
More poetry, Quotes for Caregivers, and what it means to have a Home Health Aid here
This is my first attempt at linking downloadable printables here, so your feedback is appreciated.
This time last year, I published my first and only post detailing life with POTS and my recovery process, My Toothbrush, My Trophy. One hour after hitting the publish button: BOOM, I was back in the hospital for more POTS shenanigans. It felt like some kind of blog jinx! October is POTS Awareness month, and last year my body threw a parade in honor of it.
For me, the thing about POTS is that I didn’t know there was an illness I couldn’t fight my way through. With chronic pain, I had forced my body into submission for so many years- all of my adult life in fact. Whether I needed to utilize walking aids, medications, treatments, or therapies, my crippling pain hadn’t kept me from working, going to school, or being there for my husband and family. So, when my autonomic nervous system kicked it (and it really crapped out on me), I was (and still am) shocked that my willpower has not been enough to overcome.
Last October, the ER doctors thought I was having a heart attack because my chest pains were so intense, like electric jolts piercing my heart. I had experienced chest pains, palpitations, and a racing heart (tachycardia) regularly for years with the onset of POTS, however nothing as intense as the pain that began that morning. The ER had never heard of Postural Orthostatic Tachycardia Syndrome or Dysautonomia before (go figure). They didn’t know what my other conditions were either (of course) but I wasn’t as concerned about those at the time. We explained how once upright, my blood pressure drops and heart races, and my autonomic nervous system shuts down. “Oh, almost everyone has that,” the ER doctor said under his breath, chuckling. “Well doctor, everyone doesn’t almost pass out every time they try to sit or stand up,” I whispered through my head pain, angry that he would assume I am confined to lie flat in a bed for years shrouded with earplugs, a headset, and an eye mask- all over a little dizziness upon standing. (Sure, everyone has that). Keep in mind, this is tucked into a tiny dimmed closet-size room in the ER, as my hypersensitivity to light and sound exacerbates my ongoing migraine disorder too much to be around noise. I lucked out with a sweet nurse who knew what RSD was, and she was the only reason I was given special accommodations. They did multiple tests at the hospital, then through the week, I had several rounds of tests at my Cardiologist’s office. You know, the usual fun…
Verdict? They couldn’t find any reason for my heart to experience the additional pain. That was excellent news. POTS is a nervous system condition which effects the way the heart behaves; it isn’t a cardiac condition effecting the way the body behaves. No heart condition- score!
Conclusion: Since they couldn’t find any cause for the pain and onset of increased symptoms, the next 5 months thereafter were out of the doctor’s hands. (Thanks doc!) My fatigue and brain fog were unwavering. Just trying to move my fingers across the keyboard, holding my phone to text, or forming complete thoughts enough to compile a short blog post became so trying…so overwhelming…so frustrating… my short-lived recovery progress had taken a step in the wrong direction. For the first 2 years after the POTS began, I was in stasis mode. Pancake body, syrup brain. I was so ill and no one knew how to help me. After the spinal procedures in 2011 which threw my body into this tangle of illness, I was basically a lump of pain and un-moving frustrated flesh. Having finally made my first bit of progress last year, working so hard to use the restroom on my own and do some of my own personal hygiene from bed, falling backward again was not in my recovery plan! By last Christmas, I became depressed that my body was no longer moving forward and I was still stuck in the same bed going on 4 years after all of the doctors, hospitals, medications and hard work. (If you follow my blog, my posts reflected my disposition.)
Many with autonomic nervous system dysfunction (dysautonomia) carry on normally, dealing with bouts of dizziness or feeling lightheaded periodically. About a quarter of those with POTS are too disabled to work a job. And a small percentage have symptoms which are so severe, they are confined to a bed and may be hospitalized regularly. I fall into the last category, though I haven’t been hospitalized for a whole year- take that chronic illness! (Let’s not count the times I’ve ignored my doctor’s recommendations to go to the ER). A very large number of those with POTS are teen girls. Awareness and treatment options are lacking for the estimated 70 million individuals living with Dysautonomia worldwide. [Dysautonomia International] Conditions like EDS, Fibromyalgia, CRPS/RSD, heart attack, Chronic Fatigue Syndrome/ME/SEID, Chiari Malformation, stroke, Intracranial Hypertension, Traumatic Brain Injury, Spinal Cord Injury and Parkinson’s can cause Dysautonomia and POTS. To find out if you or a loved one have POTS, see a cardiologist for a “tilt table test” and cardiac monitoring.
Symptomatically, POTS is compared to Congestive Heart Failure, COPD, and massive blood loss. I’ve learned that everyone with Dysautonomia experiences it a little differently, but the most prominent symptoms for me have been low blood pressure, fatigue, confusion, trouble concentrating (brain fog), extreme hypersensitivity to sound and light, brain fog, head pain, trouble breathing, syncope/pre-syncope (fainting or almost fainting), vertigo, brain fog, muscle shaking, weakness, trouble digesting and absorbing food (gastroparesis), bladder dysfunction, chest pain, heart palpitations, brain fog, weak pulse laying down, heart racing when upright, orthostatic intolerance, brain fog, and temperature change intolerance…did I remember brain fog?
It took 2 years for me to get properly diagnosed with POTS and Dysautonomia because pain management doctors and primary care doctors don’t know what it is, what the symptoms are, or how to treat it. Just yesterday, my pain management doctor tried to argue that I developed it from “laying around too much” when the immediate onset was actually damage to my spinal cord. For individuals with POTS, the opposite is true. Pushing yourself to do more than your body allows can send your blood pressure plummeting for weeks or months putting you into an almost comatose state, can cause fevers, flu-like symptoms, severe fatigue, wide-spread physical pain, swelling or “blood pooling”, and a long list of intensified symptoms (see all Dysautonomia symptoms here). Last October, for instance, I believe my trip to the ER and subsequent 5 month puddle-of-me was the result of pushing myself to climb a flight of stairs.
Thankfully, this past spring, my body let up enough to allow me back on my journey toward recovery. (Que happy music.) I’m currently doing home physical therapy from bed with a knowledgeable cardiac rehab therapist, I have new goals for my life, and when I am faced with my body’s set-backs, I’ll try not to allow my frustrations to defeat me.
I’m honored to share this from poet, writer, author Mary Jane Gonzales’s new blog: MyInvisibleLife.net
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 leading up to that point. 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.
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.
Find her books here available on BarnesandNoble
I’ve started with a home health aid for the first time after considering it for a while now. Many people have asked me how it has been to have a home health care professional, so I will share a little bit about what the past two weeks with a professional caregiver have been like for me.
Nearly all of my doctors have suggested I hire professional help over the past four years of being bed bound from chronic illness, but both you and your family must be comfortable with that arrangement. Also, with my hypersensitivity to sound, light and worsening pain with speaking and movement, it might not have been conducive for minimizing pain when these problems were at their worst. Now that I can tolerate visitors at times and I am doing better with short, quiet conversations, I was curious to see how I would do with a professional aid. Also, I have needed more help recently, so I am very grateful to have an aid to assist me.
I have scheduled the aid to come in short shifts and she allows me to take lots of breaks, though I still end up sleeping for the rest of the day. I may start making lists for her the day before she comes so I don’t wear myself out or in case I wake up feeling too bad to communicate. I am still getting used to having someone who isn’t a loved one do things for me, but so far she has helped with things that I might not have asked for otherwise.
I was pleasantly surprised that my new caregiver walked into my room on her first day knowing all of my health concerns, special needs and requests. Even though I had been evaluated by a nurse prior to making arrangements, I assumed it would be a bumpy start- it wasn’t. She is certainly a professional! She is so sweet, kind, gentle, and very attentive. I liked her from the moment I saw her, and my family also likes her, which I was very happy to hear.
A professional caregiver can prepare meals, do light housework, laundry, help with bathing, dressing, run errands for you, take you to your doctor appointments, make phone calls on your behalf, or help you with special health needs you have arranged with them. If you are more mobile, they might act as a companion, going different places with you to make sure you are comfortable and have your special health concerns cared for.
Because this is a professional caregiver, I feel I have more independence and I am making more of my own choices again. For anyone who is being cared for by family or a spouse, you understand how important that is for your sense of self. With family members, my chronic illness issues and episodes can be distressing for them at times, and while I am so grateful for their willingness to help me, I hope that having an aid to help will also give them a bit of a break.
On the first day she arrived, she organized my room in a way that would suit me better, and moved a few things around for me (she is as quiet as a mouse). On the second day, she helped me with a sponge bath, put lotion on, and helped me change my clothes. Earlier today, she gave me a bath for the first time, changed my sheets and cleaned up my room. I was very anxious about the bath since that is one of the most difficult things I have to do apart from going the doctor, however she was such a great help. Aside from my usual after-bath fainting spell (which she handled like a pro), we both managed pretty well and got me clean! I have a lot more confidence going forward after today, and I feel she and I can conquer more difficult tasks together. The next time she comes, I’ve arranged for her to ride along with me and my father to my doctor’s appointment so she can see how he transports me from the bed to the car, then from the car into the Dr’s office- just in case she ever needs to take me anywhere.
I have big plans to get much stronger this year, so I’m hoping my new caregiver and I will be doing more and more things together. She is a lovely and compassionate woman, and I look forward to making her into a new friend!
It washes over you like the song that makes your heart pound. Like the goose bumps your body forgets to have any more. It’s like a constant shiver, and then sometimes, all at once- like being startled. Then, it shatters so loudly into a million pieces all over you and you think your insides might have been shredded along with it.
If you have grieved a sudden loss, you know this feeling.
If you have lived through multiple crises, traumas, or losses, you know this feeling all too well. And if this is a very familiar feeling to you, I am sorry for all of the pain and shock you have endured throughout your life.
Good news: my body has had its first good days in 4 years! The past year, I could feel improvement, however every inch of progress has come with a setback in another area of my health. So, it has been a slow year of trade offs and feeling as though my head, body and brain have been fighting against one another. Since I couldn’t make physical progress, I took advantage of the slow return to clarity of my mind. I have been focusing on improving my brain functioning, my speech, fine motor skills, trying to regain memory, and making strong connections with others again online. In four years time, that seems like minor recovery, but when you can’t wait around for your body, you do whatever you can with the tools you do have. I know everyone reading with a disability, in recovery after stroke or an accident, or with a chronic illness understands that sentiment.
I’m not new to chronic illness as I’ve had severe chronic pain for 10 years, however dealing with multiple chronic illnesses in such a debilitating way started in 2011. Actually, last week was the 4 year anniversary of the procedures that caused all of the major issues that have so changed my body, mind, and the lives of my husband and our families. No matter what, I feel as though a part of me will always be left back in May, 2011. And a huge piece of my subconscious is still 22 when the problems first began. I think losing health stops time in a way- or changes the way time moves and how we move through it.
I thought I was done grieving for my loss of health, but after becoming bed bound at 28, the grief process started all over again. Every time something else is lost to my body, I have to mourn first before I can accept it. Several years into my journey with chronic pain, I decided to celebrate the “Spooniversary” that began in 2004. It was no longer a melancholy day of loss; instead I decided to celebrate the endurance, support, and faith it took to traverse it. Ten years was a milestone. But all of my newer illness acquisitions are a different ballgame. Maybe next May I will be ready to also celebrate how much this body and mind have endured since 2011. For now, I think I’m just now beginning to come to terms with much of what has taken place over the past 4 years.
Last week was also the anniversary of the passing of my best friend. Every year at this time, I reflect on all of the ways she changed my life, all of the soulful years we spent learning and growing together. The way we became each other’s family at a time when we both were desperate for a safe space to call home. We became each other’s peaceful place in the world. The time has finally come, so many years later that I can look back on her life and our years spent together and feel more joy than sorrow. Her life continues to affect mine. Her spirit echoes into me every day. I think of her words, her soul, her love, and I cannot help but feel love still flowing like a river from her memory. Because of her, I know that a person can have more than one soul mate- and those rare relationships can save you from life’s ugliness in the most beautiful way. These unique connections can ground us to the world so we don’t float away when the earth seems to have lost its gravity. I remember her every day as she is part of me, and always will be. But as you know, there are those days, those celebrations, those dates marked on your personal calendar which tug at your heart just a bit more. The week of Mother’s Day is always that for me.
And the same week, without warning, like a loud crashing vessel falling from the sky and onto our roof. Gravity was lost on the earth again. Another confusing life circumstance. So many unanswered questions. Shattered pieces all around- you don’t know where to begin the pickup. For now, I don’t even have the words to express what I am feeling or what just happened in our family. This new current issue is certainly unexpected. I think May is definitely NOT my month!
I will look forward to a time when my needs aren’t in the hands of others, and I can be the one helping once again. I am always very thankful to have those in my life willing to do the things I no longer can for myself. Having better health days lately makes me feel like that time might be closer within my reach.
When I look back on this past year, and how my body has been swapping one good thing for another big setback, the past couple weeks feel very similar to that. My body is giving me a green light to move forward in recovery, while life is ripping the rug out in another way. If I were not grieving, I would be so excited about progress. It does help soften the blow, so I’m very grateful to have the added strength at this time especially. That is life, isn’t it? The universe is always balancing itself.
Since May is Mental Health Awareness Month, bloggers and those on social networking have been doing awesome work sharing and advocating about equal care, I wanted to add something as well. People who are bed bound or home bound do not have the same access to mental health care. Whether you have expensive private insurance or Medicare/Medicaid, it is nearly impossible in most areas to find a “Home Mental Health Professional”. Most psychologists and counselors are not covered or willing to do home visits, nor are they trained in distance therapy (online counseling). There is an abundance of web therapy now, however much of it is not covered under insurance and does not always adhere to guidelines for keeping records and evaluating. For those who are incapacitated from chronic, progressive or mental illness, there are a myriad of psychological implications and we do not have the same treatment options as those who can drive to an office, sit in a waiting room, and then sit and talk aloud with a counselor in person. We know we are losing desperate brothers and sisters who have severe chronic pain, chronic illness and mental illness conditions. In the near future, home therapy options NEED to become more easily available and covered by providers.
Take the Stigma Free Pledge for Mental Health Awareness Month 2015
My toothbrush is relatively small and lightweight. My father would say, it’s “smaller than a breadbox.” It is inexpensive and is of no real value, but my toothbrush is a measuring stick for my ability recently. Independent tooth brushing is a high goal I set long ago, and I have finally reached it!
Just one year ago I was unable to brush my teeth without assistance. Whoever was caring for me (usually my husband) would help me to brush my teeth from a horizontal position in bed. This is how I have done just about everything for the past 3 years. With help, lying down. This past year, however, I have been working hard toward more independence and “going vertical.”
I have a condition called Postural Orthostatic Tachycardia Syndrome (Whew! That’s a mouthful!). P.O.T.S. causes my heart to race like crazy whenever I stand or sit and then my blood pressure drops so quickly and sharply that I pass out or nearly pass out. It’s like you are running a marathon for a moment and then you suddenly get very familiar with the floor. It’s quite a riot, let me tell you. It comes along with other problems like vertigo, chest pains, fatigue, head pain, labored breathing, dehydration, and sometimes I feel like I’m having a full-on panic attack all day. But the most disabling part is the passing out disorder (obviously, being unconscious is pretty disabling).
So, my fight with gravity began by quite literally crawling slowly with lots of rest stops- and only to the restroom. Then, for a couple of years, I was walking slowly to the restroom, held up by a caregiver, bent over with my body in an upside down “L” position so my head was down, keeping my blood pressure up. Now, on my good days, I am working on being fully upright, without help, for (drumroll) about ONE MINUTE altogether. It’s very exciting!
Brushing my teeth means trying to get out of bed, walk about 10 feet to the bathroom, and balancing to brush my teeth without passing out or falling down (P.S., I’m a tumbling expert).
Even though I’m not able to stand or walk vertical throughout, this is HUGE progress in my recovery. A minute upright gained in three years sounds very small, but for someone with an Autonomic Nervous System disorder (Dysautonomia) like POTS, it’s such a big step. Getting to the restroom on my own, and now doing my own dental hygiene on MY terms feels amazing! And guess who has given a stand-up hug? That’s right! THIS GIRL.
I have other neurological chronic pain and chronic illnesses, which many of those with this disorder do. But I am not alone, as so many young women and teen girls have POTS as well. Just know that people with POTS can range on a broad spectrum. There are those who have some mild heart and blood pressure symptoms once in a while, but are functioning normally otherwise, then there are those like myself who are in/out of hospitals for care and are bed-bound for years from the disorder (though hopefully not for much longer…). I’m coming for you POTS!
If you liked any of my images today, they are all original and you may share them, along with my POTS Awareness Plaque.
Great article on Dysautonomia from Elle and the Auto Gnome