Aging Painfully

Aging Painfully

By Cynthia Toussaint.

People have always told me that I look youthful for my age. For the last decade, those comments have comforted me – because somehow I thought that looking young meant aging would be easier than for most. After all, I’ve had high-impact pain and fatigue for nearly forty years. If aging isn’t for sissies, it sure as hell isn’t for this woman in pain.

On New Year’s Eve I turned 58. I’ve never had an issue with age. In fact, when I fill out forms or do interviews, I often accidentally indicate that I’m older than I am. But this year I’m not making that mistake. I’m seeing clearly that I’m much closer to the end of my life than the beginning – and I’ve got a lot to figure out due to significant illness and disability. Long story short, I’ve come to realize that I may be here for the long haul.

Cynthia Toussaint

But it wasn’t always that way.

When I turned 30 and had been living with body-wide, undiagnosed CRPS for nearly a decade, I vowed to myself that if I was still being tortured without answers five years later, I’d take my life. That gave me an odd comfort because I knew my suffering would end before I got decrepit. Someone somewhere must have heard me because I was diagnosed just before my 35th revolution around the sun.

So, granted, I had more years of life, but I was still certain I wouldn’t live long due to my illness. In my mind, something was going to end me from within long before old age hit. But, lo and behold, here I am still standing (ok, mostly sitting) on the brink of 60.

Looks like I might live to be as old as the hills – and in some ways I find this to be an inconvenient truth. I can relate with those early AIDS folk who planned for a death sentence and lived their lives accordingly. Then when AZT and its like began extending lives, some of these people were devastated because they were psychologically and financially ready for their exit.

Like them, this sticking-around thing is new and I’m trying to figure out what I need to have in place for quality of life going forward. A couple of things come to mind. Best possible mental and physical health leading into old age and loved ones that will offer care and companionship. Right now, I’m short on both. My ace in the hole is my longtime partner and caregiver, John, and I have a circle of close, loving friends. But like them, John will get old – and while he double-swears he’ll outlive me, I’m often told that caregivers die before their care recipients. Losing the love of my life is unthinkable.

Another challenge I see is that getting old would eventually mean losing my nonprofit work which gives my life meaning. That in turn would lead to depression and isolation while still being plagued with high-impact pain. This picture terrorizes me. I’m often labeled fearless, but that’s not my vibe these days. Truth be told, nearly forty years of catastrophic living has hardly provided a solid foundation for my “golden years.” Sure, like everyone, I’d like to live well to a ripe old age – pursuing my passions, spending quality time with grand kids and being surrounded by loved ones when the end comes. Sadly, that scenario is off the table.

That being said, starting today, I’m going to stack the deck for the best possible years ahead. Hell, maybe even the best ever. I’m already on my way – and it starts with attitude.

A dozen years back a friend, who’s been a paraplegic most of his life, warned me that when we’re disabled long-term our bodies fall apart at 50. His words spooked me silly, but the threshold came and went and in many ways I’m healthier than ever. I don’t get caught up in the drama of western doctors telling me that my eye floaters, optical flashes and receding gums are “just another unfortunate sign of aging.” One recently advised that I go off clonazepam because at my age I could take a tumble. When I share with close ones that I’m slammed and fatigued from fibromyalgia and CFS, they dismissively remind me that I’m not as young as I used to be. I wink and move on.

Even the wisdom shared by many woman that menopause would bring me to my knees was dead wrong. On the contrary, it was a breeze. I swore to myself that I wouldn’t take hormones or put on weight. Sure, I have some hot-flashes, but they’re nothing compared to what I’ve dealt with forever. Like each of us, this woman in pain knows how to adapt.

And I’m stepping up my physical and mental wellness. I exercise six days a week, eat a plant-based diet, meditate and practice gratitude daily, live my creative passions and involve myself with meaningful, stimulating endeavors. I work with a therapist to re-frame my thinking about toxic people and to let them go. I’m finally finding balance in my life by taking time off and “un-plugging.” And I’m face-to-face connecting with more people who are special to me. I’ve become a one-stop, hold-no-prisoners diva to quality days ahead.

A few years ago I didn’t think I’d be here to write these words, but here I am prepping for my third act. I don’t know what the future holds for this girl, but I’m guessing… golden.

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Cynthia you need to inform all your friends and associates on how the CDC,Andrew kolondy and prop his gang of thugs are dening disabled cpp patients and all americians adiquit pain care and life saving pain medicine and creating hell on Earth period

Jill

Well, I did pretty well too, until I hit my seventies. With 30 yrs of pain behind me I was happy at my coping skills, but went in to an unbelievable 5 yr downward spiral and still going. And its a different world when you’re alone. So enjoy every day the best you can. Aging is not for sissies. ElizabethR, you have my admiration!

susan

well said. I am 62 and a woman with secondary multiple sclerosis. Disabled and receive SSDI. I struggle with pain every day. Like they say what doesn’t kill us makes us stronger. (I hope)

LoriAnn Locke

I’ve always been told I look younger too. I wonder if it has to do with the great amount if sleep I need and the part time work I can only do. Life is a huge challenge but I am grateful for my husband and the meaningful work that I do. I am a music therapist.

Cynthia your story is one all of us think about that have chronic pain. Then it makes me think of the movie The Greene mile. At the end Tom Hanks wonders how long he has to walk on the Greene mile if a mouse could last so long. Basically he was tired of walking it & wondering what all else he would have to endure till the end. Your cheerfulness is amazing, your ambition to control what you can is good motivation for all of us. I take my motivation Moment by moment because I have been suffering for 27 years with multiple issues. Yet I’m very grateful that I’m not as bad as some cuz I know it could be worse and then it is worse for some people. I pray daily that are United States what get some common sense and stop torturing its own people. I am grateful I have a voice when there are some that cannot even speak about their pain. When I heard the president talking about the border wall and the people that were murdered. he use the very words that many of us have written & called & said what if this was your family member what would you want done for them. I wonder if he got that phrase from The Chronic pain people. We have beg for mercy , and we received none. There’s tragedy all around us but some of it can be helped instead we are being denied help. Even stigmatized for being in pain. I wonder if Medicare is now going to deny disability on having chronic pain?

Linda N Coffman

Thank you for sharing your story! I turn 57 tomorrow, just had a wonderful dinner with two of my sons and a future daughter in law. I needed to hear your words! I did not think I would still be here. Each extra day is a gift, so I thank you for reminding me!

Nancy L

Thank you for such a positive post. I needed to hear this as I have had such a bad week. Never thought having worked in healthcare for my entire career I would end up like this! Had a great day last week overdid and have been paying dearly for it. But I would do it over again just to feel almost normal for a couple hours. God bless you!

Cameon Keeley

All I can say is I am you and you are me..ditto, ditto, ditto. You speak of my terrors and I can’t help but reply. I have been alone before but this will be different and its coming up sooner than later. It’s good to know I’m not alone. Thank you.

George

Nice piece. Thanks for sharing your story.

Maureen M.

Hi Cynthia, Happy Belated Birthday!
as always, great Writings! Thank you. I relate to everything you wrote here. I turned 64 in Sept and am forever telling others ‘but my spirit is 44!’ and so I’m always struggling with acceptance of my illnesses. Although, I’m getting there! Lol
Oh, and I laugh when friends my age tell me it ‘all has to get with aging’! They have no idea that I have felt 90 for many years already!
I have practiced much of what you wrote, including staying away from toxic people, a difficult one for my codependent self.
But, it sure does make a difference in my pain levels and emotional state. It leaves me more alone with my self and easier to focus on my modalities toward better health.
Aside from 26 yrs of chronic spine related pain I was told about 8 yrs ago that I had Fibromyalgia due to my complaint of chronic fatigue.
Two years ago I began to believe it was really CFS but after being very sick for 10wks I was finally and properly diagnosed with Systemic Lupus Erythematosus in July. Wow…that’s a whole other can of worms! But one that I now can connect the dots of many years of symptoms.
With all that said, this New Year I plan to vow to a more regular exercise program, meditation and getting back into mild yoga….which is easier to do when my Lupus gets into remission (hopefully very soon), I’m tired of being tired!
The one thing I’ve always been so admirable about you is the tenacity and strength that you have with your exercise regimen and/or swimming!
I know that having John is very helpful for you. You are very blessed.
I live alone and without any close friends where I live and my family support is nil. So, I have to fight with myself all the time to ‘just do it’! My motto ‘things could be worse soooo just do it’! Once I am in remission I hope that will be easier…:-)
Peace and joy, Maureen M.

chuck darrah

Nice post !You have a great outlook on life and handling your pain.I have been in horrible pain for 19 years now with back conditions that can not be fixed and continue to get worse especially now at age 67.I was always willing to accept my pain as long as my doctors kept me comfortable enough to have some kind of quality of life. Since this insanity set in my pain is unbearable after the only thing that worked for me; opiod pain medicine has been cut so low I am now housebound, crawling up and down my stairs if I need to go down to the first floor.We have spent our life savings and a second mortgage trying all the so called “alternative to opiod pain relief.”Society has branded chronic pain patients as addicts and doctors have turned their back on us .My wife is stuck here with me crying and depressed because she can do nothing to help my pain and angry at how unfair this whole insane situation is.We really have no hope that anything will change anytime soon and certainly not enough to give us our lives back.Suicide is certainly no option for either one of us so we sit prisoners in our home as time ticks by.I get angry when people who have no idea how bad my pain is offer suggestions that border on insulting.Maybe the pain is in your head, my back hurts when I lift heavy loads, try a topical creme, stretch,get a new bed,exercise ( I was once a 2 time Professional World Champion ), get rid of your canes,it is your shoes ,. get off those pain pills they will kill you, go get professional help for your addiction etc.I know some of them may mean well but most are brain washed by the media who refuse to tell the truth.Keep your wonderful attitude and hang in there !

Rhyothemis

Wow. I’ve done the ‘If I don’t get this fixed in x number of months I will off myself’ thing also.
I’ve had recurring and remitting neurogenic pain in the urogenital area since I was 7. Over the years, I learned what triggers to avoid (second-hand smoke, coffee – both regular and decaf) and what lifestyle habits are beneficial (mostly plant based diet and exercise).

Unfortunately, aging (I’m 50) takes its toll and the condition has become more difficult to manage. Recently, I’ve had symptoms of autonomic failure (orthostatic hypotension and nausea) and other symptoms similar to what my father experienced. He was diagnosed with Multiple System Atrophy, which is not supposed to be hereditary. The orthostatc hypotension went away after I started taking MitoQ (a CoQ10 derivative).

I’ve been using estradiol (Estrace) since my mid-20s, but only as much as needed; it has been the single most effective drug therapy for me. I dread menopause and will go on full HRT if necessary, since I know the loss of estrogen will be detrimental. I’m trying to delay menopause by eating lots of fresh legumes (e.g. English peas) [1].

Now I am looking into ways to improve my parasympathetic nervous system function, something I think could help with many types of pain syndromes. I bought a heart rate variability monitor and use it with the Elite HRV app; my HRV is pretty low for someone who exercises a good amount. I intend to try things like auricular vagal nerve stimulation [2], yoga, and eating (even more) leafy greens [3].

1 – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6204950/
2 – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5807379/
3 – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5882295/

ElizabethR

Oh, to be 58, 65 or even 75 again! With all due respect, it’s sometimes just not possible to be Ms. Positivity at 80+, especially given the current approach to NOT treating pain. I’m doing the best I can to stay reasonably active and carry on. Frankly, though,if it weren’t for my husband and 2 senior cats I would have little enthusiasm for continued longevity.

Janelle abbott

Im 60 and falling apart emotionally and physically. All because of the cdc. The cdc is going to be held responsible for what they have lied to the country about!! Their secret meeting making up those ridiculous guidelines. I hurt everyday.!!!!!! And there are worse people out there!!!!! People are committing suicide right here in our country why isnt anyone doing anything!??????? Why isnt making headline news. The illegal drugs do and all of the overdoses why not who were forgotten????? I was in shock when this country is now treating its citizens wit a government shutdown and people who struggle with pain everyday are either looking for drugs on the street or killing themselves!!! When will it change??????

Sharon Ingraham

Good for you

Teresa Kenny

I have 10 years on you, Cynthia, and have been on this pain cycle for 16.Somedays are better than others. Some years are better than others. I am thrilled and empowered by these articles, and happy that chronic pain is finally being recognized for what it is, and the suffering associated with it.

I struggle with polymyalgia, which has never gone away, fibro, CFS, RH arthritis, and several other things that come and go. Still, after all these years, often enough, my doctors dismiss the symptoms of my illnesses. But I have moved beyond needing their validation, and do what I have to for ME!

I do the best I can everyday, surround myself with wonderful friends as often as I can,
Focus on staying positive, and offer the world the best I can.
I think staying connected is an important element in living with chronic pain.
But that means many different things to different people.Find what it means to you and Hold On Tight!
Our life is not over, our journey is not done, we are still here, pain and all.
We are the strongest people I know, cause without strength, we would never have survived what we all have survived.
Stay strong and carry the message that there is life after the onset of these debilitating diseases. It is just redefined.
Thanks, Cynthia!

Dawn Rodriguez

I’ve also worried about aging alone, But sense workmen’s comp making me go off all my pain meds I now have one foot in the grave!!!!! I know I can’t deal with this pain without help. Being on SSI very low income I can’t afford to live or die, lol , it cost a ton of money for both. I haven’t slept for almost 2 months, Constant tingling on the left side of my body. I’m trying the plant base eating, just started so see how that goes. Haven’t been able to do much been in bed the most of 2 years , started stretching Some exercising but very light ! I’m happy for you feeling and looking so good!!!!! Love reading your stories!
Thank you
Dawn,

Judie Plumley

I am 62 at the end of the month. I believe we both have come to the frame of mind you speak of.
For years I have been so angry at the reason for my pain and I have been a strong advocate for chronic pain patients.
The thing is, though I still feel as strongly about our rights, I cannot allow the powers that be to take any more of my life than they already have. This year, I am concentrating on myself and how I want the last 20 years of my life to be. And I want to be as happy as possible.
Everyone is in a different place in this journey. Our job is to encourage each other, and help others along the way. I really pray we find peace.

CathyM

Thanks for your story. I’m also having to restructure my old age (60’s) due to pain and disability. I want to share an IMPORTANT NOTE: Social Security is looking for comments – they are about to change how they look at pain in their Disability evaluations!! This is important to anyone who’s worried about aging painfully!! Deadline is Feb 15th, but do it soon! Here’s the link:

https://www.federalregister.gov/documents/2018/12/17/2018-27169/consideration-of-pain-in-the-disability-determination-process

JoDawn

Thankful for your timely words!!
❤️❤️❤️❤️❤️❤️❤️❤️❤️
Jo

Bren Deliantoni

My story is similar to yours. In fact, I am just 1 year and 2 weeks shy of your age. I too have concerns of ending up alone with my pain. Recently, due to a report here, I found that in addition to Fibro, or perhaps instead of, I have EDS. I only offer this to you, because you, like I were diagnosed at a time when it was a relatively new diagnosis, and EDS has been under diagnosed. A lot of the symptoms align with Fibro and CFS, but here is a list of strange symptoms, a couple of which you already have: have or had unusual flexable joints, (I was actualy unaware that I did, until I took the test, turns out, I’m practicaly Gumby), youthful appearance, very soft skin, easily bruised, sharp pain in ears, poping in ears, tinnitus, Terry’s nails, facial pain, tooth pain, receding gums, and oh so many more! Anyway, for me, finding out I have EDS was actually a relief. I finally had an explanation for all the weird things happening in my body that did not conform to my other diagnosises. If you do have it, nothing would change, treatment is the same, it’s just you would know what the “weirdness” is about. Not that I wish it on you! I just wanted to alert you to the possibility, as finding out was helpful to me.
EDS is an acronym for Ehlers-Danlos Syndrom, a genetic condition that is currently believed to occur in 1 in 5000 to 1 in 2500.

Sandy

Cynthia, I love reading your posts. I always leave with something important. The piece about not taking in what people tell you about aging really resonates. My daughter has chronic pain associated with EDS, starting in her 20’s and now has MS as well.

Debbie Nickels Heck, MD

What a positive outlook. I particularly like the idea of riding yourself of toxic people. I don’t agree with the idea of avoiding hormones as they have benefits far beyond preventing hot flashes and you can’t treat mine away from me until I’m in my grave. I’ve gone thru similar emotional cycles over the years when I thought pain would consume me, got better, other illnesses struck due to bad treatment by a Dr I’d trusted which then resolved with treatment. I even resolved the PTSD I’d developed due to bad treatment by Drs over the years because I don’t listen to them when I know they’re wrong, allow them to bully me and refuse to pay them if they treat me disrespectfully. I’m now better than I’ve been in years.