On Chronic Illness

Tuesday, 25 April 2017

On Chronic Illness.


“[W]e cease to be soldiers in the army of the upright; we become deserters. They march to battle. We float with the sticks on the stream; helter-skelter with the dead leaves on the lawn, irresponsible and disinterested and able, perhaps for the first time for years, to look round, to look up—to look, for example, at the sky.” ―Virginia Woolf, On Being Ill

Me 'n' my silly face enjoying a cloudy day in Deep Cove
Photo by Vivienne McMaster

I've touched on this topic a little bit in public places, I wrote a piece for a book called Stay Solid about my discovery of the affects of my own chronic pain on my mental health, and I've posted a few times publicly talking about my “chronic illness” but I wanted to talk about it a little bit more in depth on here, for those who are interested, or for folks who may be in a similar boat to me and who may, like me, find comfort in the words of others sharing a similar journey.

I'm 27 and I've had chronic pain since I was 4 years old.

We didn't know what it was for the vast marjoirty of my life. Doctor's visits and family's sympethetic ears didn't do much to help me get a diagnosis or to help manage my pain. I suffered silently with disabiling bladder pain my whole life, until I was in my early twenties and finally found a urologist who didn't manhandle, belittle or abuse me like the other ones did. Instead I found a urologist who listened and diagnosed me on the spot with a small physical test. He said “I'm sure of it, you have Interstitial Cystits”. He stood by me while I cried huge sobs of tears, and he was incredibly kind. I met with him a total of two times and I can credit him with a big chunk of my current state of wellness.

He had the power to understand what was happening with me, and he used it to make me feel seen, truly seen. Someone who looked at me and saw what I had been through, the affect of the pain for 20 years, he saw how hard my life had been. But he didn't pity me and almost immediately he handed me words of hope, stories of recovery and wellness.

--

So, what does interstitial cystitis do? What's it mean? Well, it means your bladder hurts. Like a lot. I've read articles where they liken IC flare ups to late stage renal failure. Wheee! People are often completely disabled by this disease, (for example, one of the methods of treatment is to completely remove the bladder!). I was lucky and my treatment has been almost entirely successful at managing it with diet changes and physiotherapy.

I am other types of sick too I've had Fibromyalgia symptoms since I was 16 years old, Depression diagnosed since I was 15... IBS started around that time too, and a whole other pile of generic body complaints, rotator cuff injury, thoracic nerve outlet syndrome, plantar fasciitis, some sort of 
sciatica-related tendon messup, and a completely fucked up right knee... (the list is long and so I'll stop there).

A lot happens to your brain when you're in chronic pain. You sort of age quicker than those who are pain-free. There are all sorts of physiological and psychological affects. My life has looked a lot different than those who have grown up pain-free.

I have never been pain-free.

Why am I writing so publically about this? Well, I am still sick, and it feels important that I don't hide that part of me. Honestly, I don't need to talk about it often (I have such an incredible crew of kin who take care of me needing to talk about this kind of stuff when it comes up) but the complete lack of sharing this information about myself feels like lying about who I am. This is such an important part of my identity.

I always wish for a world where people with chronic illnesses get treated with respect and dignity, that they are welcomed in to the world as they are and that they grow deep bonds within their community. One of my very deepest most core values is Friendship, and I believe that friendship for someone with chronic illness (for this person with chronic illness at least) is essential and vital. And I'm grateful for my few people in my life who see me as I am (all messy and swollen and sick) and are solidly still by my side. My kin who have my back in this good hard world.

And after all of that I want to say that although I'll likely never be able-bodied, I am well! I live my life making sure I am living as closely aligned with my beliefs as I can be, and I take good care of myself. Although I often have a lot less hours in the day compared to able-bodied people, and I work a lot slower, but I am happy in my struggles, happy with the wholehearted life I have carved out (with help of friends and family!) of the trauma and pain I was given.

So consider that a short, heavy part of my story, visible to those who are curious.

Sending much love from my garden-suite in East Vancouver! With Bean-cat all curled up in between my arms as I write this.

Signing off,

~ Sylvia McFadden








9 comments:

  1. Thank you so much for sharing your story. I too suffer with a few things, a couple being anxiety and fibromyalgia symptoms, and feel like there are very few people in my life who understand. And you are right..A good friend can make a world of difference. ☺

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  2. I am grateful for your openness. I have high-functioning anxiety...although most days I'm not sure how I'm functioning at all. It can be so lonely, so thank you for this post. It's nice to not feel so alone.

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  3. I too have chronic illness (Multiple Sclerosis and Fibromyalgia add depression too!) For many years I was told I need a psychiatrist and the pain was all in my head. It was a relief when there was a diagnosis because I knew I wasn't crazy! I never wanted what I have but the validation that I truly was in pain helped. Thank you for sharing because I hid behind my pain for many years until I met wonderful people like yourself here on IG and in the fiber (crafting) world. I'll never be pain free but having friends and those who understands helps a whole lot. Take care and thank you for opening up to the world. You are very brave. ❤️

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  4. Thank you! Your courage both in living your life and in sharing this as an important piece of who you are and have become is inspiring.

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  5. I really appreciate your heart to share. It helped me to read this today. I have chronic illness due to black mold poisoning. I have fibromyalgia like symptoms all the time. Doctors I have spoke with are not familiar with this illness and offer no help at all. Essential oils are one of my tools to functioning and helping my immune system. Thank you for reminding me that what we eat is important to our health. My husband and children are helpful and supportive, but outside them, I feel very lonely. I have been suffering from undiagnosed depression since early childhood. My mother would never accept it and once I created a management to my depression, I chose never to seek help. Many days I suffer inside, alone. It is too hard on my family to hear about my feelings. They are troopers enough to deal with my physical issues. Thank you for sharing! And for inspiring me!

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  6. Oh I so understand this!
    I wish physical (and mental too) pain was more visible from the outside somehow, Like people could see who else suffers. I had a back injury/unexplained pain that i went to several chiro & masseuse and was never relieved - no med or therapy touched it, and i thought i would live like i'm trapped in an old person's body for my entire life. Until ONE DAY, magically (mysteriously) it went away... at least a handful of years after giving up on having any medical professional help. There's hope, but I understand part of your struggle! Hang in there, I think you're awesome.

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  7. Has anyone tried prolotherapy? I have undergone a series of injections for lax ligaments and pain, it has changed my life. Going from not being able to move to back exercising.
    Prolotherapy is used for pain, fibromyalgia etc.
    If u want further info contact me. Life saver!

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  8. Mind blown. I have been drawn to your designs, which I expect embody your spirit and mind in a way, right? and to find out that you've suffered with chronic pain, well. Kindred spirits. Much appreciation for your way of connecting and expressing yourself in the world. Much admiration for your forthright sharing, which I know sometimes feel like being quite vulnerable. And, surprise! There is such strength in vulnerability. Many thanks and blessings to you.
    (Ravelry: happycamper - just finished Authenticity. Love it!)

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  9. You mentioned the effects of long duration of darkness. I wonder what it would feel like if 1. a long series of led lights were strung (installed), 2. a dimmer switch was used with a timer, and 3. the timer coincided with normal daylight. I LOVE light too. At almost 70 yrs old my eyes don't see as well. I use leds in rooms and have 5 light unit in bedroom which adjusts from a few to all the lights on. Makes a world of diff and is economical. Of course, where you are, regular light bulbs (incandescent) give off extra heat which may help to warm room up when colder outside. Just a thought. Love the patterns. Going to get a grouping next month. Thanks!!

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