It’s hard to believe that it’s been a year – today – since this roller-coaster rare disease journey began. Even harder to believe is the fact that this whole saga was triggered by a broken arm (a Colles’ fracture, or snapped radius).
After a full year I still have limited use of my right hand and wrist, and I’m right-handed. The affected area is very painful, and also extremely sensitive to the touch; fabric rubbing against the skin can cause a pain ‘flare’ that feels as though a blowtorch is being held to my hand and arm. That specific type of pain is called allodynia, and it can last for hours. And hours.
The impact of this rare disease isn’t only on my hand and arm, though. CRPS is an autoimmune and neuro-inflammatory condition, which causes changes in the body’s “central and peripheral nervous system” and “sympathetic nervous system”.(1) In a car, it would mess up the entire electrical system.
If that weren’t enough, it can also affect brain plasticity: “Neuroimaging studies of patients with CRPS have demonstrated a decrease in area representing the CRPS-affected limb in the somatosensory cortex” of the brain, when the affected and unaffected limbs are compared.(1) CRPS impacts my entire life, so I’m really hoping it goes away – and soon!!!
Complex regional pain syndrome (CRPS) is a chronic neurological condition involving the limbs that is characterised by severe pain along with sensory, autonomic, motor and trophic impairment.
This condition may be induced by surgery, trauma or minor injury and has a varying course, ranging from mild and self-limiting, to chronic disease, which impairs activities of daily living and health-related quality of life.”(1)
To mark the 6-month point in this rare disease journey, last September I wrote a list of the Top 10 ‘little things’ that I missed most about not being able to really use my hand and wrist. Since then I’ve gained a bit more use of my hand, but still can’t do many regular day-to-day activities (like handwriting).
So to mark the passage of a full year, I’m writing another Top 10 list of things I miss because of this rare disease. I don’t usually like to think about the things I can’t do – I prefer to focus on the positive, on what I can do – but am making an exception for this non-celebratory anniversary:
10. Wearing jewelry on my right hand and wrist; I haven’t been able to wear any of my rings or bracelets on that hand for over a year. That seems like such a trivial thing, but most of these items were gifts and have sentimental value
9. Cooking home-made food by myself, without help; I can’t chop fruit or vegetables, grate or shred food, use a can-opener, or do anything in the kitchen that requires both hands
8. Making things; crafts like sewing, scrapbooking, and creating hand-made greeting cards
7. Baking cakes, cookies and particularly cupcakes – and then decorating them with fancy icing and designs
6. Lifting weights, and doing other weight training exercises (like tricep dips and wall presses); I’ve been doing low-level – for fun, not competition! – weight training for over 25 years. I get up at 0500 to train at a gym several times a week, before work; except during cycling season, when I’m out on my bike instead. Weight training’s like meditation for me; it relaxes me, and helps me deal with adversity and stress. It’s frustrating that now, dealing with disease adversity, I can barely do any weight training
5. Doing the outdoor activities and sports that I love – properly – with both hands (I put cycling in a different category, as it’s something I’d normally do every day except in winter); canoeing; cross-country skiing; mountain hiking and snowshoeing (using trekking poles with both hands, like in this photo just before CRPS!); skating (I can’t lace up my figure skates with only one hand)
4. Cycling. I’m able to do some limited riding, but really miss… a) riding a road bike; b) being able to brake properly on my commuter bike, which would allow me to bike-commute to work; c) doing proper descents (i.e. go down hills quickly), which I can’t do because I can’t brake properly; and d) go for rides longer than 20 km; any longer than that and my entire hand swells up and feels like it’s being blowtorched
3. Being able to sleep, without being woken up by pain flares several times a night; sometimes for hours
2. Not being almost constantly in severe pain; not only neuropathic pain, but also joint pain, skin pain (allodynia)…
1. Not having to deal with the almost-constant fear that this disease will once again start to spread, and that my medical team will once again ask me to consider amputation of my arm – from about halfway between the wrist and the elbow – to prevent it from spreading any further up my arm…
Yesterday I ran into an old friend, who had heard about my Complex Regional Pain Syndrome (CRPS) from another friend. We chatted for a bit, and then she told me: “You have a really good attitude about your disease”. I laughed off her comment, saying that I have a good attitude about almost everything ‘-)
She insisted on her point, asking how I keep such a positive outlook despite horrible – and constant – pain. The truth is that I simply don’t know how to reply to that question. If I could explain it, maybe the doctors at the hospital pain management unit could do something with that information; to help other patients living with chronic pain.
One thing that keeps me grounded is knowing this: It could be worse. The situation could be much worse, so I consider myself to be lucky. There’s a French expression, “chanceux dans sa malchance”, which means “Lucky in your bad luck”. That’s part of my outlook.
This is what I replied to my friend: “It’s not terminal, I’m not dying. It’s not dementia or Alzheimer’s Disease, or another neuro-degenerative condition. Or cancer. And, even with CRPS, I’m lucky. It’s not in my legs, so I’m mobile. I can walk, ride my bike, drive, get around by myself. I can’t imagine how difficult it is for people with this in their legs…”
That’s really how I think. If I drop a cup, and it breaks, I don’t get super-upset that I dropped it. Instead, I think to myself that it’s a good thing that we have other cups! It’s not the end of the world, you know? That’s just how things go; nothing ever stays the same, or lasts forever.
Have a fantastic day, wherever you are! If something doesn’t go right for you today, try to figure out how you react. Do you get upset or angry, and focus on that? Or do you brush it off, accepting it as part of life? Feel free to let me know what you find out, about yourself! ‘-)
Reference:
(1) Goh EL, Chidambaram S, Ma D. Complex regional pain syndrome: a recent update. Burns Trauma. 2017;5:2. Published 2017 Jan 19. doi:10.1186/s41038-016-0066-4. Accessed 07 Mar 2017. Web:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5244710/