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Posted by on Jan 15, 2019 in CRPS / RSD | 0 comments

Sushi splint (15.01.2019)

Sushi splint (15.01.2019)

When I took this photo earlier tonight, at the start of a supper with friends, I’d planned to write something funny. To maybe blog that I should build a chopstick attachment for my dynamic splint, or about trying to use chopsticks with my left (wrong!) hand.

When I got home, I spent some time with my husband. I told him a bit about our supper, and we talked about the comedy show we’re going to see tomorrow. I reminded him that I’d be meeting another friend for coffee or tea, on Thursday.

At that moment, I was (again!) reminded how lucky I am. That I have a husband who’s also a friend; and that we’re still ‘in love’ after 25 years. That I have family, and friends; loved ones to whom I’m not genetically related.

So much of what I’ve read about my rare disease, considered to be a chronic pain condition, is about loss. Loss of function, loss of limb, loss of life. Not because the disease is terminal; research has shown that the suicidal ideation rate for its patients is almost 75%.(1)

That means almost three quarters of patients – 3 out of every 4 of us! – with CRPS consider suicide.(1) I’ve heard that there’s a saying about this disease; that the other 25% of patients just don’t admit to thinking about it!

This isn’t the actual percentage of CRPS patients who take their lives, but this research was considered something of a wake-up call in 2013. That such a high proportion of people suffering from this disease had considered no longer living with it.

The types of loss I’ve read about, due to CRPS, aren’t only physical. Patient narrative – individual stories & patient journeys, even social media posts – often tell of social isolation.

Of people who’re diagnosed with this rare disease, living with severe pain. Who are also alone, whether geographically isolated or out of touch with family & friends.

In that instant, telling my husband about a supper with friends tonight, a show tomorrow, and seeing another friend the next day, I felt so thankful.

Yes, I’ve had a horrid and painful disease for well over 2 years now; Complex Regional Pain Syndrome (CRPS), formerly called Reflex Sympathetic Dystrophy (RSD). Yes, it’s had – is still having – a truly negative impact on my life.

As an example, I’ve been on medical leave for almost a month now despite promising myself- when I was first diagnosed – that this wouldn’t happen.

Yes, I’m struggling to accept that my CRPS is now permanent and not expected to improve; although it might worsen. Yes, this disease has negatively impacted almost all of my life.

But… and this is important beyond words… I still consider myself lucky. I have love, I have family, and friendships. Even if some are in other parts of the world! I can still appreciate the beauty of nature, the ‘rush’ of exercise. Humour, and laughter.

This social support has been a large part of what’s kept me going; when I was first ill but didn’t yet have a diagnosis. After I was diagnosed, and faced with difficult – very rushed! – treatment decisions.

And now, confronted with new symptoms after more than 2 years of adapting to CRPS. This is why my planned funny story, about trying to use chopsticks with my left hand, somehow didn’t seem appropriate for the moment.

a woman wearing a dynamic splint, reaching for a pair of chopsticks

Photo: Sandra Woods

So I’m being serious. If you’re suffering from chronic pain, or any other condition, and you’re thinking about ending your life, please please please reach out to a helpline or a helpchat!

I’m not a doctor, and this isn’t medical advice. But please know that you’re not alone. If you’re reading this and are thinking about taking your life, or you know someone who is, PLEASE call a helpline!!!

Here are some places you can call, for yourself or others:

Canada
Canada Suicide Prevention Service (CSPS) for crisis support, by phone, text or chat – in English or French:
– Phone: toll-free 1-833-456-4566
– Text: 45645
– Chat: crisisservicescanada
And there are specific phone lines for:
~ People under 20; KidsHelpPhone = 1-800-668-6868
~ First Nations & Inuit; Hope for Wellness 24/7 Help Line = 1-855-242-3310
~ Canadian Indian Residential Schools Crisis Line = 1-866-925-4419
~ Trans LifeLine = 1-877-330-6366
And this Canadian website has links to local helplines: Canadian Association for Suicide Prevention.

United States
This wiki (website) has a list of suicide hotlines, including some specialized service (e.g. for veterans):
http://suicideprevention.wikia.com/wiki/USA

As always, feel free to comment; if you don’t want me to publicly post your words, just let me know!

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(1) Lee, Do-Hyeong et al. “Risk Factors for Suicidal Ideation among Patients with Complex Regional Pain Syndrome” Psychiatry investigation vol. 11,1 (2013): 32-8. Accessed 15 Jan 2019. Web:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3942549/

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