Hello there! Welcome back to Thankful Thursdays, my gratitude series running until Thanksgiving 2016 in which I lament on the good in life through the challenges presented by living with Ehlers-Danlos Syndrome, POTS and several other associated chronic illnesses. This week’s post is a day late due to several factors adding up to Chronic Illness Life with Ehlers-Danlos Syndrome.
I always say, better late than never!
I am excited about this week’s topic because I hope to better other’s understanding of why my wheelchair is a totally awesome thing even though it results from negative circumstances. Too often our society regards wheelchair use as a symbol of giving up rather than a beneficial adaptation. Moreover, too few understand all wheelchair users are not paralyzed. When I was provided a wheelchair in February 2016 for my official diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS) I was more than grateful, I was relieved! It was the beginning of relief after a very long journey! Since then, I dedicate my creative energy to raising awareness on the many facets of my own chronically ill, disabled experience as I adapt my life to best accommodate my disabilities.
For the previous 9 months, I struggled walking. If I didn’t lose my vision and black out, I was out of breath from my tachycardic heart and hypoxia. My activity tolerance continued to drastically decline despite my commitment to physical activity. I recollect my last standing yoga practice when I biffed it onto the floor due to syncope from the postural change of my sun salutation. I checked my pulse to find it dropped out to 35 beats per minute and my oxygen saturation to the mid 80s!
For those not medically inclined a normal heart rate is 60-100 BPM and oxygen saturation between 95-100%.
I rolled my Yoga mat up and haven’t done a standing routine since.
Over the last 7-10 years, my neck, back, and hips caused increasingly worse issues in day to day life. It started with aches and pains and moved on to days where my back and neck would stiffen so badly after activity there was no other choice but to rest. I suffered many strains, sprains, and spasms under normal stress in usual EDS fashion. All these things seemed routine because I grew up in a family with chronic back problems. Only a few times would I seek medical treatment, for which straightening in my thoracic spine, reversal of the normal curvature in my cervical spine and slight scoliosis was uncovered with x-ray.
I never received treatment beyond symptomatic management, chiropractic treatments and physical therapy for these problems. I used to see this as unfair and wondered why I could get “fixed” with surgery. With Ehlers-Danlos Syndrome now diagnosed in my case I can regard this as a blessing since the outcome were likely to result in further complications and more surgeries.
Life’s little ways of whispering opportunities of gratitude diminishes the sting of my twenty-year mystery diagnostic battle for vascular EDS a little less salty. Still, the tale of how my back fell to pieces is an interesting one I want to share.
In 2011, after several grueling weeks on a busy nursing floor, I strained my neck, shoulder and back badly one short staffed night shift.
I never went back.
It wasn’t the first time I injured myself in such a way and wouldn’t be the last but it was the first time a medical professional ever encouraged me to ditch any sort of job involving physically straining activity.
I took the advice and decided it best to seek out positions in nursing with as little direct patient care as possible to avoid any more damage to add to whatever was going on in my back.
It didn’t matter. The problems continued even with the changes. Eventually, my issues exacerbated not only in my neck, shoulders, and back but also my hips, wrists, knees and ankles. I managed much of my pain and disability holistically for many years with an intensive yoga and meditation practice. Yet, the damage expounded over the years. My musculoskeletal system started giving my trouble from a young age but these increased issues included signs of serious damage such as numbness and tingling, and painful neuropathic type pain as well as further mobility impairments.
After 2-3 years, I reached my limit being an always on-call, nurse case manager. I switched jobs and my routines changed from primarily daylight hours to the midnight grind.
The new gig also entailed direct patient care but I thought I was up to the challenge what with the benefit gained from my health practices since the injury in 2011. I underestimated the problem and long story short, another injury ended my employment as a floor nurse once and for all.
Workman’s compensation denied my claim due to suspicion of an “undiagnosed connective tissue disease.” I declined further from changes to my routines and added stress. Within less than a year, I was officially diagnosed with Ehlers-Danlos Syndrome and POTS along with some other things. The years of painful damage to my joints were easy to tune out until it all caught up with me again! All I can say to encapsulate the experience is please listen to the body’s messages! These important warnings need attention!
All I can say to encapsulate the experience is please listen to the body’s messages! These important warnings need attention!
Both EDS and POTS work against me in my attempts at unassisted mobility.
Not only do I have a case of dysautonomic syncope and hypoxia which keeps me from standing but I also aggravate my musculoskeletal issues doing more damage than good often times because of my difficulties with proprioception (the sense of the relative position of neighboring parts of the body and strength of effort being employed in movement). Over the years these issues coupled together to make life a painful experience which required disassociation to endure all too often. If I thought too hard on it I found it inconceivable others were in as much pain as I was because others were able to keep going. I could persevere for awhile but every time I push beyond my limits I end up with a crashed out system and worse off than before.
If I thought too hard on it I found it inconceivable others were in as much pain as I was because others were able to keep going. I could persevere for awhile but every time I push beyond my limits I end up with a crashed out system and worse off than before and this was just with normal everyday stuff people do!
After the injury, I couldn’t walk without severe pain and needed to modify my walk to avoid dislocating my hip. There were other times in life when my hip caused me to limp but only for a few days, here and there. This time was different. Not only was the pain constant and worsened with activity but the limp lasting 6 months only got worse the more I tried to work it out.
It was at this point I bought a cane to better tolerate the processes at work.
The cane provided great stability when walking but the POTS symptoms worsening kept me in bed most days. I began losing more muscle tone and strength. Every time I tried to work through it, matters were made worse. It was like every time I tried to get up and dust my symptoms off like I’d done so many times in the past, my symptoms flared worse and threatened to take even more of my life away. I began to bow with conditioned revere to my illness.
I began to bow with conditioned revere to my illness.
On days I stayed in bed, I wasn’t tortured by an evolved form of painfully restless legs at nighttime like I was experiencing during the nights of the days I was up to activity. This small observation strikes me powerfully as I’ve not experienced restless legs since I was granted my wheelchair 8 months ago as I author this post!
You can only power through so many blackouts, dislocations, and severe pain before making a deal with your disease process to avoid further complications.
Accepting the wheelchair recommendation from the physical therapist was me making an agreement with my chronic disease process. I promised not to push past the threshold of symptoms anymore. I promised my body I would stop pushing it to the limit and practice self-love when it comes to honoring my disease processes with the care deserved to preserve my function.
The grave realization all those generalizations meant to motivate actually worked against me over the years was a sour berry. For me, surpassing limits did permanent damage to my musculoskeletal system. My diagnosis of Vascular Ehlers-Danlos Syndrome disqualifies me from any benefit from surgical intervention. Therefore, my wheelchair and the other noninvasive, supportive measures are my life line to any sort of quality in life.
So, my friends and family who would be sad for me being dependent on my wheelchair, please don’t!
Rejoice with me on the fact my decades-long battle with my health finally has a name qualifying my case for the supportive management and therapy needed to survive and thrive!
Because of my wheelchair, I’m able to get out of the house! My wheelchair helps me hurt less! In many ways, it is a new lease on life for what life looked like just a year ago.
Surprisingly, my insurance didn’t put up a fight to provide coverage for the chair. I cannot express the level of relief and gratitude I have in my heart for this blessing. Even though I’m far from “well,” I have hope my wheelchair, bracing my joints, supplementing my nutrition, and all the other supportive measures getting official diagnoses opened up will help me to focus less on my pain and more on the beauty of experience.
Being a new wheelchair user is a surreal experience, indeed!
I’m amazed and terrified at how people stare at my legs. I can almost see them wondering if my legs are going to move.
Suddenly, I’m regarded different because of this wheelchair for reasons I can only speculate.
If looks could kill, I would be dead from some of the expressions I’ve encountered since becoming a wheelchair user. I opt to avoid eye contact when out and about. The experience of being treated like a child and being completely ignored while in my wheelchair opens my eyes to an underlying problem ingrained within the foundation of culture.
Some react as though this is the worst thing in the world. Still, others act as if this is some sort of farce based on the fact I can move my legs and walk a few feet before passing out. I worked with people with disabilities most all of my career before I became disabled. I always considered myself especially sensitive to the cases I served on because I’ve always lived with physical and mental challenges, mostly successfully. With becoming dependent upon my wheelchair I see my lessons are far from over. Each day is another learning experience as I adapt to life sitting down rather than racing around breathlessly trying to be “normal.”
There are others, like me, who resent ableist remarks for the lack of sensitivity to the reality of experience. When I say I’m grateful for my wheelchair, what I mean to say is I’m grateful I no longer feel the need to live up to ableist definitions of success. This is a great blessing because, in all honesty, I suck at cultural expectations and norms! I’m happy to have a wheelchair even though the circumstances creating the need are unfortunate, my life is still valuable and worthy of any experience I want.
As a disabled person who spent years with the silent mantra playing inside my head: “just do it,” I realize the harm done in tuning out the lessons my body attempted to teach.
After graduation dinner featuring these 3 beautiful grads! I can't believe it's already this time. Could it just freeze in time just like these photos before it's all over too quickly again? So proud of these young women and so grateful to my soulmate for standing with me to raise them into adulthood. Little did I realize at 16 when I first started up this mothering gig that living to see them graduate would be so challenging. My health took a major decline over the last year due to Vascular Ehlers-Danlos Syndrome. I now use a wheelchair because walking is not a viable option. I've lost 40 pounds in the last year or so due to not being able to absorb nutrients from my food. My entire GI system takes naps when it should be working creates a situation in which I am unable to eat as often or as much as I should AND want. Fluids get in my lungs and food gets stuck in my throat. So before you ask, just know I'd love to eat a sandwich, but it's just not always possible when dealing with a gut essentially shutting down in preparation for death… or a feeding tube… These are my realities to face these days. To be able to see my baby girls graduate was one of the happiest, most bittersweet moments of my life as yet. Beautiful and gifted, each with amazing strengths to share with the world… These girls make me smile everyday. These girls go out of their way to spend hours with me laying in bed, watching Youtube videos and just talking about life since most days it takes all my strength to even sit up in bed. These lovelies are for me in my time of need. Just being able to spend the quality time with them is some of the best medicine to relieve the incurable pains of this condition. And. This. Man. He takes care of me now when I cannot independently care myself. Even in the saddnes of illness, we grow our bond even stronger, becoming more cosmicly connected with each level with suceed. The losses this past year were big, but I feel so grateful for all the gains. If it weren't for these people pictured (and some not: my son, folks/siblings, ma-in-law) I would be so lost in the despair of all the physical losses this illness causes! #EDS #Family #grad
Nowadays, if I refuse to listen, I might end up with a month long flare of chronic symptoms, admitted to the hospital or even worse with the risk vEDS hanging over my experience. I have a chronic, disabling condition only proven to worsen in presentation and severity with each decline I encounter. Pushing myself beyond my limits could result in an early death and ignoring my body’s warnings only caused me complicated hospitalizations over the years. I never gained anything but more pain, debility and lost time by foregoing my limits. From now on, no more! I have kids, a soulmate and family I want to live my life for and I will not give up any more of it for the sake of “not letting my disabilities define who I am.”
My wheelchair empowers me to honor my limits with the reverence deserved.
Instead of aggravating my problems and pushing my limits, my reserves are allotted to spending quality time with my family. I’m not as fearful for what I will feel like in another ten years because my diagnoses justify the support of a wheelchair, braces, and all the other treatments in place to improve the quality of my chronic illness life. Validation and supportive treatment is a crucial aspect to improving the prognosis of chronic disabling conditions. It’s doing wonders for my own case.
Chronic illness life gives me countless opportunities to ascertain wisdom and strength. If I could get rid of it I would but instead, I feel an intrinsic call to share my story so some other soul might find the strength to continue advocating for themselves. My duty doesn’t include making others feel more comfortable with my disabilities rather it is my duty to make myself as comfortable as possible to live a good life with respect towards my limitations. I don’t have to deny my pain, distress or limitations and I won’t live in denial of my body’s needs. That road only leads to a miserable existence and I choose to hold on to the good in life! This takes some practice and finesse, just like I am doing with these weekly gratitude exercises!
The days I feel confident in my treatment plan and progress, I realize it is because of my wheelchair I am able to successfully incorporate most of these treatments into my life. There is never a moment when things feel settled or complete but that’s life with chronic disease.
While I am never far from the grips of a chronic flare and subsequent decline, with the right supports I am having better days even though I’m never completely well. My wheelchair is the key to having those better days. It is not a sign of my defeat but rather a sign of the strength it took to hold myself together for as long as I did before accepting the benefits a wheelchair provides to improve my quality of life.
Thankful Thursdays is a series dedicated to taking life’s lemons and making the best, most refreshing lemonade possible!
In other words, chronic illness life is tough but with the right attitude, coping skills and supports I’m adapting.
My gratitude for all the goodness available to my experiences gives me joy whereas sinking in the sad realities of the diagnoses and prognoses might kill my spirit. I choose to transmute my pain into something productive. My wheelchair gives back my life and then some. As I expand my understanding of the social injustices and challenges facing those with disabilities from a first person perspective so am I enabled to raise awareness on this multifaceted life experience.
My wheelchair is a life saver, not life stopper!
Thanks so much for visiting Only in this Head: Chronic Illness Life with Ehlers-Danlos Syndrome‘s series Thankful Thursdays!
This series continually helps me re-frame my experience into something motivating beyond the suffering embedded within my disease process.
In sharing my story, I hope others find motivation to tell their own chronic illness tales.
Sharing raises awareness helps to tear down false ideas about people living with disabilities.
Please join me next week for Thankful Thursdays Volume VII: The Blessing of a Good Support System. I will exclaim my gratitude for the support provided by family, friends and the online chronic illness communities while lamenting the importance of a good support system when living with chronic illness and progressive disability.
Until we meet again, I hope your drawers are full of spoons!