Category Archives: Recovery

Is it Still working for you?

I’m a pretty tough customer in physical therapy. But, the other day my physical therapist said something very poignant that gave me pause. I’d like to share it with you.

He said, because I’ve had chronic illness for so long, I’ve adopted so many coping strategies to help me through. So many techniques and methods I call my own to get me from one day to the next. (And here he is teaching this old dog new tricks.) However, he was right when he asked me, “Is all of this still working for you?”

Is it still working for you

You start collecting techniques from the very first moment you hear the word, “permanent” or “chronic.” Our doctors don’t help as quickly as our own shifts and wriggles take effect. Soon enough, you’ve built a pattern for yourself that is keeping you going. Over so many years, and multiple conditions, you better believe I have some modalities and some definite patterns! Are they still working for me?

Could they be holding me back?

Adaptation is paramount with chronic illness. You have to be able to rebuild in order to find purpose again, to find yourself again amid your ever-changing body. But as your body changes, does the structure that you built change with it?

For instance, if all you were once able to do is use the computer or your smart phone, maybe you grew a strong online network which gave you purpose. You could have done nothing instead, but you were brave and reached out to others online. It was incredible how much your work online distracted from your illness and impacted your life and the lives of others! It may have even saved your life. But as your body changes, you realize you can do more tactile work like crafting. Is spending as much time on the computer still working for you? Or, could it even be holding you back from moving more?

I have to go over so many of the coping tools I use- all of the amazing methods which have helped me to this point and ask this question. It’s spring after all; time for a spring cleaning of sorts. Is it STILL working? It may have saved my life last year, but will it take me to my next goal this year?

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Gear for POTS & Chronic Migraine Pain

Because of my chronic monsters, the upcoming “Miracle Day”(aka wedding) will require some special technology. I’ve been prepping for about a year, and have done some research to quiet my critters. Would you like to see some of the gear I’ve found?

Even though I am still uncertain how my body will react at the wedding and how long all of my issues (see my about page for specifics) will allow me to stay at the ceremony, having this “armor” makes me feel more ready to attempt this ‘impossible’ feat. I know everything will be in the red zone, but my sister is counting on putting eyes on me when she is at the alter. She needs me there, so these little gadgets are going to add minutes to my miracle- and some extra minutes are all we need, baby! A good friend of mine thesickdiva blog said she’s praying my endorphin’s will kick in and I’ll be there for an hour instead. That would be amazing! Thank you, Jenny!

Ear plugs– I have so many different kinds. I usually use the soft foam kind for comfort. PS, these come in many sound-blocking capacities. But for this special occasion, I’ve purchased Decubulz which have the highest NRR available. I have yet to mold and fit them, which will take help, and boiling water, so we’ll see if they work as well as advertised. I’ll let you know how they work out.

HeadgearBose wireless sound canceling headset has been on my wishlist for a long time. They have been such a blessing since the holidays! (Thank you Aunt Darlene.) I don’t know how I ever lived without them. Before, I was using gunrange type headgear, and they were not only very tight and painful, but they didn’t offer much sound protection. The Bose are the best sound protection available, and much more comfortable resting on my neuropathic head and face. I like that I can wear them as needed, and then I can flip the switch on the side for the sound blocking feature before my head explodes. It helps turn down the pain and some of the fight or flight sensory overload symptoms. I wish it blocked out all sound, but they are a big improvement over any other headset I’ve tried.

Theraspecs Sunglasses– I did a great deal of research on migraine reducing shades before deciding. Many of my friends have prescription eye wear for light sensitivity, but a physically wearing trip to a new doctor plus lights being shone in my eyes for new specs was off the table for myself, though if you are reading this with headache disorders triggered by light, prescription shades is one of the options. I was relieved to find there are many kinds of shades to choose from. My friends said to look into Serengeti shades, sporting eyewear, and rose tinted lenses. I did. I soon found this company, Theraspecs, which was started by a woman whose severe migraines are brought on by light. She and her husband make lenses with several kinds of filters, (including FL41) and will even custom make your shades if you send in your favorite frames (winning!). Since getting mine from Theraspecs, I notice a big difference in screen brightness from my laptop, Kindle and phone. I’ve yet to try them outdoors, but I’ll be giving them a spin in a couple of evenings! My Aunt also got a pair of theraspecs custom made, so we will give you an update on head pain reduction. We were both very impressed with the level of communication from the company, and customer service.

Bride’s Maid Dress– We were told to pick our own dresses (with criteria). I absolutely love the one I found. As you can imagine, I have not purchased any (non-pajama) clothing for a very long time. I’m so excited to wear it! I haven’t worn makeup in quite a while, either and found some fab red lipstick that I hope will accentuate my pale…ehem porcelain complexion. (The sale price is not what I paid.) ASOS is one of my favorite online clothing shops for gifts and “lounge wear.” Here are one of my accessories that I’m excited about wearing as well; it’s both functional and fabulous. If anything else, I will be put-together on the outside! (wink)

Reclining Wheelchair– Such exciting news!!! Even though last week was one of the worst in a long time (that’s saying something folks!), this wheelchair was such an amazing gift to my life! I’m so stoked about this! Thank you for celebrating its arrival with me, and allowing me to share it with you all!!! My reclining wheelchair was not only approved by insurance, it was already delivered! Isn’t she pretty? We usually have to rent one, and now, we have one for keepsies. As I’ve shared here before, my Postural Othostatic Tachycardia Syndrome (POTS) only allows me to sit or stand upright for a couple short minutes before going into Pre-syncope (starting to get sick and pass out). But if I’m in a reclining position, my POTS will stay in check. That is a huge relief! If I am forced to be upright for more than I can tolerate, my health can go into a setback for a while. I know this wheelchair will be an awesome step forward on my journey, and hope it leads to great progression for my life! (If your insurance has not approved your chair, try Invacare on Ebay for new, inexpensive, high quality chairs with free shipping.)

Invacare-recliner

Hopes and Dreams on Wheels

Nurse/ home health aid– I’ve had a home health aid come every week for the last several months (game-changer), and she will be assisting me at the wedding. Because of her help, no one in my family will be distracted by me, and they can focus on my sister and the wonderful event! A great relief to both me and my sister. When I told my sister my aid would bring me to her wedding, I could tell it lifted a weight off of her shoulders. This newer aid has never taken me out of the house, so I admit that I am anxious about that. My ex-husband is really the only person who was fully aware of all of my transport issues and needs when we would attempt to go to doctor’s appointments. I’m putting a lot of trust in her professional ability and experience with other patients. She hasn’t failed me yet!

Blood pressure cuff– This is just my boring reliable old blood pressure cuff from Walgreens. We got it way back in 2011 when my one monster (RSD) invited a whole crew of critters to the party. I don’t sit around measuring my BP for kicks, but we’ll bring it along in the car just in case.

Though I wish I had a temperature controlled, sound-proof bubble I could participate in the wedding through, I can only prepare so much. We’ve been planning for over a year, I’ve been in physical therapy for months, and I have every item to make my body as cooperative as it will get. If I had not gone through all I did this past year, I don’t know if I would be ready for this day. That is a ray of sunshine coming through these clouds because I love my sister more than anything.

Just as my sister is planning all of the details to make the day as beautiful and memorable as possible, I’m planning for a smooth event as well. We can’t approach it with fear. No day is perfect, but how we enter into it mentally can change the memory completely. For me, the truth is that it will be painful and frightening. I will have to recover for a while afterward. If I can go to be present for their vows between 10-20 minutes, that would be so incredible! It will be a triumph and so precious to be there supporting my sister, her soon to be wife and our families.

I’m so honored and privileged to be her maid of honor. It has been a joy to contribute to her wedding in my own ways. I have some little surprises for her and her bride for the day of, which I’m getting excited for. It has been very difficult, sometimes heartbreaking (for both of us) not to be involved like I would be, like I SHOULD be. That river runs deep for us both, but more importantly, so does our relationship. For the ceremony, I don’t know if anything could stop me from being there in any way I could be. She is my heart. Of everything that has gone on in my own life in the last few years, wedding planning has been such a bright light I am so grateful to be included in. See you on the flip side! Thank you for rolling along with me.

Multiple Sensitivities…of the Heart

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Breathe. Don’t pass out. Keep moving forward. One foot in front of the other. Pay no attention to your pain. Focus on your breathing. Focus on your legs not giving out. Don’t fall down! Ok, throwing up would be the worst right now. Here come the shakes… Breath girl! The light? Do we have to do the light? Oh no, there goes your head. I can’t see, I can’t see… This hurts too much. I can’t do this. I have to do it. Okay, let’s do it.

*****

This was this morning in physical therapy. My physical therapist comes by once each week. Some days are good, some days are bad. Today was a great day, so we decided to do something I’ve never done before… at least not for almost 5 years: go outside.

When I go to doctor’s appointments, I’m usually taken out from my bed in a wheelchair. I have a face mask on, ear plugs, a head set, and I keep my head down between my knees to keep my blood pressure from plummeting, so I don’t faint. If I’m in the seated position too long, over with my head down, I have to get out of the chair and lay down on the ground with my knees tucked to regulate my blood pressure, breathing, and head pain. (Laying in an elevator or doctor’s office waiting room hasn’t made me any friends-yet.) When I get to the car, I lay in the backseat under pillows and blankets for arduous the drive.

Today, I wasn’t going anywhere but the porch. It was a warm overcast day, and happened to be very quiet on our road. What better day than this to do an “exposure” to sound and light? I don’t have OCD or an anxiety disorder and I’m not in Cognitive Behavioral Therapy, but desensitizing your body and brain to stressors and pain are very similar in traditional Physical Therapy. My PT uses Cardiac Rehab Therapy and Pain Rehab Therapy with me to get me stronger and moving… and it IS working. My fatigue is lessening, I’m stronger, I can tolerate more sound and light than I used to, I don’t pass out like before, and I’m progressing in general.

But today, there was another sensitivity I didn’t expect to encounter…

I bent over my brand new walker, slowly moving out toward the door for the first time, swapping my eye-mask for dark tinted sunglasses. Because I was pretty much blinded by the daylight, I was trying to maneuver awkwardly out the front door. My brother had joined in with my physical therapist to help me on my pilgrimage. I was so focused on all of the physical aspects written in the first paragraph that it caught me so off guard when my physical therapist wrapped his hand around my waste and grabbed my hand to help me out. That’s the moment I choked back tears. That’s the pain that hurt the worst.

It wasn’t the horrible pain in my head, the ringing in my ears, the screaming sound of birds chirping, or my heart racing from trying to be on my feet for too long, it was the caring touch of another person that reminded me so much of my ex-spouse… that almost took me down.

Maybe that sounds creepy to you, but if you have a condition like CRPS/RSD in which people around you are unsure where and how they can touch you, so much that they decide it’s best not to at all, you understand the touch aspect of this. Or, if you are no longer with your once-significant other, you will understand missing supportive touch, like a pat on the back, or an outreached hand when they notice you need help down a step.

Today was 2 firsts. I went out onto the porch successfully. I knocked out another goal! Wahoo! I turned my low pain day into a triumph. It was also a day I realized how much I miss supportive touch. I really want to find ways to incorporate touch back into my life, however physically painful, so it isn’t this emotionally painful to be without.

“Touch has a memory.”
John Keats

Chronic Resilience and Learned Optimism

Learning Resilience and Optimism. Coping with chronic illness.

My sister manages a student property center near one of the best universities in the country. It is known that more students from that school will withdraw due to psychological breakdowns and will have more suicide attempts than any other area college. She has already had several incidents this year at her property alone that ended with students being checked into the hospital for said reasons. They are all the most elite academics, but now, they are in competition with one another. Once the valedictorian of his high school is currently struggling to pass his college courses. So why are even the best and brightest failing to cope with the pressures of life?

I’ve been reading the book Learned Optimism by Martin Seligman. There was an entire revolution in psychological treatment called “Positive Psychology” which began after he wrote this breakthrough book in 1990. Before that, psychological practices were geared toward treating mental illness. Seligman asks the question, why aren’t people fulfilled and thriving when we know more about human behavior than ever before? Now, psychologists and counselors help people to become more than just not-sick, but actually thrive.

In his book, Learned Optimism, he theorizes why there is more depression, anxiety, suicide, and drug addiction than ever before when we live in a happiness-driven society. He believes it is much, much more than public awareness of mental health driving diagnoses. Children were once taught how to overcome obstacles and persevere, but teaching practices have shifted to the current focus of boosting self-confidence regardless of efforts. He proposes that individuals of prior generations were raised to believe they were surrounded by various types of support, and that sense of community has been lost today. In the past, people realized that their support system shared responsibility for every success, failure, and overall person they became. Because there was an awareness that outside forces contributed to their lives, when their hard work paid off, they were sharing their triumphs; when they failed, they wouldn’t fall too far or stay down too long as they had a safety net.

In the past, Americans valued country, faith in government and patriotism. People were raised connected to a personal faith in God, organized religion provided a community, connection with family was the cornerstone of society, and people were inclined to make close connections inside of their local communities. Just the sheer idea that others believe in you can be the difference between a devastating pitfall that derails your life and a curve ball which you can bounce back from. Today, we don’t grow up ingrained with the same surrounding support system, lasting connections, or faith in God and country.

Society teaches that your successes are your own to take pride in and celebrate. You are paving your own way in this world. There is a great focus on self-determination, but the tools for coping with inevitable life failures are incredibly lacking. We are taught that personal responsibility and success is everything, but when we fail (as we all do), the personal fallout can be devastating.

I was already planning to write this piece on Learned Optimism when I happened to read an article on Resilience and was surprised to find that the number one quality suggested in becoming more resilient is to create the same types of support that past generations grew up with (as in Learned Optimism). Surrounding yourself with close connections, friends, family members, becoming more connected to faith, plugging into community, and making permanent, lasting relationships with “people who affirm you, recognize your strengths, natural, innate abilities, and provide the support and acceptance you need” will increase your resilience [Mary J. Yerkes].

Other ways to become more resilient: accept good enough, focus on what you can control, find meaning in life, accept advice from your loved ones, take care of yourself, ask for/accept help, don’t be surprised when life changes suddenly, expect things to eventually get better, set goals you can achieve, laugh. Being resilient isn’t about silencing yourself through turmoil or ignoring your emotions, but resiliency is a method of utilizing multiple positive coping strategies along with a mindset that is postured to “roll with the punches.”

The author of Learned Optimism says, “If we habitually believe, as does the pessimist, that failure is our fault, it will undermine everything we do.” Pessimists feel personally responsible in all success and failure, and helpless to make changes. This thinking leads to tendencies for depression, anxiety, and chronic pessimists are more likely to have health troubles later in life. Does this mean that society’s focus on self-reliance and self-esteem is creating generations of pessimists?  The good news is, both resilience and optimism can be learned!

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Learned Optimism by Martin E.P. Seligman, Ph.D.

Chronic Resilience: An Interview with Danea Horn by Toni Bernhard

10 Tips for Building Resilience in the Face of Chronic Illness by Mary J. Yerkes

Do Higher Levels of Resilience Buffer the Deleterious Impact of Chronic Illness on Disability in Later Life?

Grief, Relief and May Showers

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.

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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.

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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

Awakening: Brain meet Body

After many years of pain I then came on a time of suffering so unforgiving, it appeared my body would not make it out alive. But finally, I feel an awakening is upon me. In some ways, I believe my brain is renewing itself.

The putrid smell and taste of physical rottenness dissipated. The illness and ongoing pain have not left me by any means whatsoever, yet over this past year I have felt a change occurring inside of my mind. Maybe a transformation.

I did not realize how large a gap I had put between myself and my body these past years. I suppose the traumas experienced under medical care contributed to my drifting. My complete and sudden loss of physical independence surely didn’t help. However, there was no crueler attacker than my own body. To endure this unending physical pain and other debilitating maladies, I must have cut so many ties between me and my lump of person. To live under a physical betrayal so strong you realize no sense of personal willpower can guide the outcome- was an enormous blow. The only way to survive it was to drift beyond my physical self.

~Free My Self~

After the damage to my brain.

After disengaging from my great betrayer: my body.

After the pain went from unspeakable to so immeasurable,

I could no longer speak.

After there were doctors who were unafraid

to use uninvited hands on my body in its weakened state.

After family members had to dress and clean my flesh.

Yes, “my self” liberated from “my body.”

It had to, you see?

This recent awakening began with feeling present again. And new creative thoughts and senses followed. More than my only thoughts, “just breathe, drink, eat.” After years of survival alone, something new surfaced, like a tiny green sprout pushing its way through heavy concrete.

For the past few years, eating has been an uncomfortable challenge and chore. Although I have little appetite, I notice the smell of foods with a new curiosity. And my tastes have changed. I favor different foods and savor scents, flavors and textures I never enjoyed before.

All of my life I have been a sort of “Tom Boy.” Collecting bugs and rocks as a child, preferring to play outside with boys, spending far less time thinking of my appearance than most girls and women it has seemed. The only lotions or perfumes I own have been gifts. But coming into this renewal of myself, I have become acutely aware of my skin. For so long I didn’t have any connection to my flesh-I have even detested it in some ways. The betrayal, the dying, stinking body I could feel slipping away from this world. But it fought. It held onto life! And now, I dab a scented lotion onto my living body in appreciation. I inhale the mild fragrance all day knowing I am the bearer of this pleasant lingering smell.

When did my eyes become attracted to jewel tones like fuchsia and purple? I long to shop for clothes and home decor some day. What!? This is unlike me altogether. Then, as I practice my handwriting, it appears much more feminine than before (my scribble used to be a family joke). Reuniting with my body has brought about a womanly change in me. And I do feel different. Aware of new things. So much has occurred; I don’t think I can go ever back to being that person I used to be. I may as well transform into someone new.

My brain is making connections and is attempting to make friends with my flesh once again. Obviously, there are some new connections, as well. It is challenging to make friends with a body that constantly bites back, but some friendships are difficult yet still rewarding, right? I’m learning a lot about Neuroplasticity and how much the brain renews itself. I hope in time I will be making even more transformations. Who knows what other discoveries I will make along the way and what new connections I might find.

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Magical Fairy by Peggy Wolf Designs Etsy | Awakening: Brain meet Body #Spoonie #TBI

Magical Fairy | Peggy Wolf

Thank you to Peggy Wolf Designs for allowing her Magical Fairy Image to be featured.

Please visit her enchanting shops of original prints and leather goods to purchase something beautiful for your home or gifts!

www.peggywolf.com

www.etsy.com/shop/peggywolfdesign

This entry has been included in The Spoonie Daily online magazine!

My Toothbrush, My Trophy #pots

Keep Calm and Go Vertical. "My Toothbrush, My Trophy" an article about baby steps with POTS and Dysautonomia Awareness month. POTS Meme. abodyofhope.wordpress.com

Keep Calm Go Vertical POTS

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).

POTS Meme | My Toothbrush, My Trophy #POTS

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).

POTS Memes | Weebles Wobbles

Weebles Wobbles Poster

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!

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Defying Gravity Wicked POTS Awareness Month Plaque

Defying Gravity Wicked POTS Awareness

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

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Living life with a chronic illness is definitely not easy. But I do my best to push through all the barriers this illness puts in front of me! In my heart and mind, I believe maintaining a positive outlook on all situations in life will carry us through to much better times! I hope you find the information that I provide both helpful and inspirational!

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