*This post was first published on februarystars.co.uk
Table of Contents
A Day in the Life of Chronic Pain
My partner massaged shampoo into my hair as I hunched over in the bathtub, shivering with pain. His finger movements were awkward but gentle, which made it all the more endearing. The pain was unbearable, yet I had insisted on a shower as feeling clean grants me a sense of wellness. I wept my eyes red and whined without inhibition, before he tucked me into bed like a child. This isn’t an unusual event for many of us who live with chronic pain.
Happiness and Pain Can Co-exist
I suffer from a number of chronic illnesses whose names sound like tongue twisters. Antiphospholipid Syndrome. Systemic Lupus Erythomatosus. Sjögren’s Syndrome. Paroxysmal Supraventricular Tachycardia. I have an annuloplasty band for a heart valve, and epilepsy is the easiest, except that it isn’t. This excludes surgeries I’ve had such as Tenosynovectomy and for Cervical Squamous Intraepithelial Neoplasia 3 (yes I had to Google that as well).
The worst part about living with them for me is their unpredictable nature. I could be having a great day, only to be in immense pain the next. It is difficult to find joy in this union that I didn’t ask for, and which I’m unable to divorce. Your body becomes a filthy jail cell, and you can’t go very far. It feels like a life sentence for an innocent victim. But if this is for the rest of my life, then I have no choice but to search for joy within it. Happiness and pain can co-exist, although such a concept confuses our rigid society. We like for things to be black and white, because it is easier that way.
The Joy that Writing Brings
One of the activities that brings me joy is writing. On certain days it can be a struggle, as brain fog shields access to the complete repository of my thoughts. It takes ten times the amount of effort to think. Vocabulary and theories that I know become a mystery, an answer without a bridge. It makes me feel stupid.
But I sit and write, because writing is my personal panacea for all ills. While the pain isn’t diminished, it helps me to untangle the conglomerated strands wrapped around my thoughts. Every little bit counts. It not only relieves some of the psychological pressure, but I experience a shot of delight whenever I discover a silver strand. Writing is cathartic and nourishing at the same time, which is yet another paradox. It is a well of inspiration without external stimulation, filtered over my lifetime.
The Inspiration from Travelling
Travelling is another activity that brings me joy by refreshing my perspective of life. Observing the normal, everyday lives of people in other cultures is a wonderful reminder that there’s more than one way to live. The beauty of our planet awakens my soul, and the kindness of strangers melts my heart. The grandness and resilience of nature leaves me in awe, and makes me realise that life is amazing despite it all.
The Epitome of Meaningful Friendships
The friends I have choose to hang out with me of their own accord. I have no material things to offer them – no wealth, power nor career connections. I’m not very fun either; I often leave parties early, and need lots of rest during full day events or trips overseas. Those who remain are genuine, and I’d rank them in the top tier of humanity. Their kindness, generosity, empathy and depth is what being human is all about. I am fortunate to be able to experience this on a frequent basis.
Enduring the Difficult Days
Then there are those terrible days where all I’m doing is clinging onto the edge, as I wait for my next dose of painkillers. I don’t want company in a time like this, although visitations do make me smile. We converse away some of pain’s despair, and chocolate becomes a sacred object that brings brief relief.
All of these moments in life are gems covered in dirt. Buried truths left to rot, but germinate and blossom instead with a sprinkle of love and kindness. The surroundings may be drab and rain may be a constant, but flowers grow regardless. It is still possible to admire their beauty, then.
For years I have been escaping, fighting, denying and begging with pain. They worked out for some time, even decades, but they aren’t long-term solutions. Recently I’ve come to realise that I need to accept that pain will always be a part of my life. Part of me as a person, inhabiting a portion of my body.
Positivity Through Acceptance, Not in Denial
But I’d like to make a careful distinction here. It isn’t about positivity that ventures into the realms of denial. Like I said, it doesn’t work out in the long run. It’s about positivity through acceptance. An awareness that yes I’m in pain and the situation sucks, but it can’t stop me from thinking good thoughts. It is extra difficult when depression enters the mix, but being aware that I am depressed can make a difference. I know that what I’m feeling isn’t the whole story, and that it’s okay to try and lift my spirits and relax, despite the deception being sold to my brain.
Don’t let fear prevent you from growth; allow your mind to expand past that thick, sticky veil. There is beauty on the other side, the sort that provides meaning which transcends even happiness.
Read More: Chronic Illness is Unpredictable, but You Don’t Always Have to Fear the Unknown
For More Insight:
- 17 Tips From 17 Years Sick (psychologytoday.com): http://bit.ly/2x0X3ZS
- Finding A “Peaceful Kind of Happiness” In A Chronic Illness Life (mymedmusings.com): http://bit.ly/2JHME79
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Love this. Hope your journey is continuing to have its bright moments ?
Thank you Mairead 🙂 Life is up and down but we’ll all get there! 😉
Sheryl it’s so strange how you’re not supposed to be happy – it doesn’t go with the “look” or the “style” of being in pain, yet it’s these moments of happiness that help.
O’ and when you speak of travelling – hotel room beds where the sheets are clean, white and tightly tucked in – makes me so happy!! 😀
Haha I know right…hotels can be happy places, too (as long as we have all our comfort tools and meds lol). And yes, people do expect a certain ‘look’ but there really is none, and shouldn’t need to be one, either.
great post. i have not been able to travel yet due to my illness and pain but i cannot wait until i do again. thanks for the inspiration.
You’re most welcome, Joy 🙂 I too can’t wait to travel again, when my finances and pain levels (and COVID situation!) are in order. Hope you can soon, too!
I love the idea of positivity through acceptance, not denial. So often we get pushed into denial in the name of having a good attitude.
Hi Shelley, yes I truly hate positivity for the sake of positivity, or in denial. It in fact, depresses me and even angers me. Acceptance really is key for me 🙂
Reading this made me think of a birthday a few years ago. I went out with family on lovely summer’s day to some gardens and it was really nice to see the kids running around and so relaxing for the adults. Yet I was still in pain. Happiness and pain definitely co-exist, not just on ‘special’ days but also on the more mundane too.
Hi Claire, that’s a lovely example 🙂 I suppose that’s how flowers or treats at the hospital do cheer people up indeed 🙂 With chronic pain there’s no other way I suppose, but to find joy in the little things, too!
Thank you for writing such a meaningful and touching blog post. It was refreshing to read through this with your experience of finding happiness through pain. I try and focus on this myself, as hard as it may be, with as many chronic conditions and chronic pains we have throughout our bodies, it’s still possible for us to have happiness, and we shouldn’t let that be taken away. Thank you for sharing this with us, x
Hi Jess, and thank you for taking some time to share your kind words 🙂 Wishing you all the best with your life x
Great post! It gives an insight to what life is for people like us. I have fibromyalgia and chronic fatigue syndrome, and like you said everyday is different. Thanks for sharing this with us.
Most welcome, Raina! Yes every day is different for everyone, but with chronic illness it can really be pretty hardcore haha. Sending hugs!
Love this post and you bring like you leave parties early ? I really can relate to this how you can have joy and have so much pain ! Sounds like you have your partner well trained and you are good at writing so happy it brings you joy x.
Hi Morgan! Haha am glad you like it. And I didn’t train him, he’s just that way 😉 Strangely, pain can really make you grow closer to someone. Wishing you a great weekend ahead! x
Like everyone here, I live with 31 medical conditions i will not bore you with today! But i share the joy in finding like minded folk in this world happy for those moments of bliss in the 5 pain free minutes or the true love stories whose partners help us in and out of showers, beds, toilets and clinics, clinics, clinics while we chase cures that never come and each day get worse they hold onto the scraps of us that remain. Others tell me i am lucky and i am but he is lucky, too, because we bring things to this land we call 37 years of marriage or he wouldn’t be fighting so hard to save the scraps. I remind the ableists of this. Together my husband and I try to help anybody around us who might be forgotten- people who might need advocacy or practical help. We got kind of good at it. But without him it would be impossible to do any of it. We write policy papers and fill out forms for folks and help out in several organizations. I find focussing on other people takes me out of myself and I don’t find myself focussed so much on pain. Some days – though- bed and Netflix are the only way through! In any case though the key way is through. Each person here is precious keep going!
Thank you for reading and sharing your upbeat thoughts! You seem like a very well rounded and level headed person, thriving despite illness. And I’m glad you have a rock solid life partner to double that power 😉 Wishing both you all the best, may you find lots more joy to come in life x
I too live with , I call the multiples.
That was so well said. The fog makes my eyes go in and out. With that said I write on Twitter some. Passing the k owldge that over 20 years with this has given me. For some it may help. But it helps me forget for a moment, sometimes as brief as it is.
Thank you very much for sharing. I have many writings that I may share. At a later date.
May peace warmth and consideration fill your days and nights this year , my Dear. Having others understand the anger that comes out at times . Is not meant at or for them . But at my our type conditions.
May blessed be , Ty
Thank you for reading, and thank you for sharing a bit more about how chronic illness has affected your life. I believe it’s important for us to be heard collectively 🙂 Wishing you all the best as well, maybe you have a peace-filled, joyful new year ahead.
I am delighted to read an article that is about more than merely coping. Happiness! Yes! There is a profound difference between “living” and merely “existing”, the latter being in the category of “coping”. For years I merely “coped”, suffering infinitely more than necessary because I could not tear my eyes away from Forever…the image of my suffering Forever, something I couldn’t accept and could not stop imagining. When I finally ‘hit bottom’, barely survived a period of being suicidal, I learned to look at Today, which is something I CAN cope with AND feel happiness in, enjoying friends, reading, making art, delightful foods, and some travelling now and then which fills me with excitement and true joy at how generally decent, welcoming, and helpful people are wherever I go. Travelling is so reaffirming. It soothes my spirit to know that I am at home in the world, not just my neighbourhood.
Being ill and weak, exhausted and in great pain so much of the time easily twists my mind into thinking that I am “different”…”other than” the average person in my neighbourhood, in society, and so anything that brings me back to the reality that I belong, that I am privileged to belong in a place where I can walk out my front door and travel so very many places and find myself welcomed, that truly is an outstanding blessing.
I believe we need to read more of this. I have epilepsy too. It does not go well with the herniated disc in my neck. The two simply don’t mix. The seizures prevent the disc from healing so the only option is pain management I live with it and the ceaseless pain caused by the nerves it is pinching on both sides of my neck leaving my shoulders and arms in agony, the right arm partially paralyzed. Instead of being angry I can’t help but feel incredible relief that I live in a country where I am cared for medically. What pain I feel now is nothing compared to what fresh hell I would exist in if I lived just about anywhere except where I do. How can I not be infinitely grateful? That isn’t “positive thinking” so much as “realistic awareness”.
One last thing…I used to think of myself as a compassionate person. I suppose that to some small degree I was, but now I feel I have become profoundly compassionate as only a person who suffers deeply and relentlessly can be. It is, in this paradoxical way, a very great human gift. Knowing great pain, lasting pain, makes a person, any person, more valuable because they are able to empathize and assist others who are also in pain. And what else are we here for except to assist our fellow beings? What greater purpose could we have?
Thank you for sharing your story. I wish you peace and ease as much as possible, sweetheart. Namaste…Steph
Apologies for the late reply, am currently travelling for the holiday season, and wanted to take some time to respond to you properly! Thank you so much for reading this post, and also for sharing your insightful thoughts. Definitely have to agree with the compassionate bit, and also the part on realistic awareness. As I was discussing with someone yesterday, it’s literally impossible to comprehend what extreme pain can be like. It’s really impossible, and not even an exaggeration at that. And like you said, is a ‘gift’ in some sense.
Wishing you a peaceful, and calmer new year ahead, with plenty of love and joy x
Beautiful article Sheryl. I’m amazed by how much you achieve, despite living with so many debilitating conditions. I love your description of travelling. It really does capture what it’s all about 🙂 I have also found a therapy in writing, but like you I find it so much harder with brain fog and fatigue. I have to try not to give myself a hard time when things don’t come to me as easily as they should! xx
Thank you for reading and leaving such lovely comments as always 🙂 I’m not sure I ‘achieve’ that much haha. Right now I do feel a bit aimless because I’m not really working…but health is definitely a bit better because of that too. A day at a time, for sure! x
This is written beautifully. thank you for writing this and publishing it. It is so affirming to read and know that I am not alone in this life.
Thank you for taking the time to read and comment – I appreciate the support 🙂 Yes, you are definitely not alone in this journey. Even if no one else around you understands it, many of us around the world do x Hope you have a Merry Christmas and good new year ahead!