Today is a tough day. Actually, let me rephrase. It wasn’t a tough day until about 10 minutes ago. It started in my hand, like it always does, the place where the pain is like an ever present black cloud that is always just there. This is not new to me, not at all.
I live with CRPS, something I’ve talked about but not sure if I’ve ever really explained.
CRPS, or Complex Regional Pain Syndrome, is a rare condition that almost always occurs after an injury, and affects the sympathetic and peripheral nervous systems, more or less causing them to “short circuit” or malfunction. It is different for everyone, but in my case it causes burning and/or throbbing pain, as though someone lit a fire under my skin. Sometimes it feels as though someone has inserted a white hot poker into my palm, or wrist or arm. It causes allodynia, which is extreme sensitivity to any kind of touch or contact. I can’t wash my hands or take a shower without causing myself excruciating pain. If my hand so much as brushes up again my purse, a piece of clothing or another person, that is pretty much it. Imagine, especially anyone who took chemistry in school, how bad acid can and does burn on your skin. I often feel as though someone has taken a giant gauge needle, filled it with acid, and injected it into my arm. I get colour and temperature changes in my hand and arm, and have had as many as 5-6 visibly differently coloured areas on my hand. Sometimes it causes an itch, but not the kind you can scratch. It is a deep creepy crawling feeling, like someone let loose a colony of pissed off fire ants underneath my skin. And for all of these things? There is pretty much nothing I can do to stop them from happening.
It is, so far, incurable, and is so rarely known that a lot of doctors don’t know what it is or how to treat it. We are vilified in the court of public opinion and the media for the necessity of taking opiates to help manage our pain. We are frequently challenged on the need for pain meds, called drug seekers and disbelieved.
It’s just your hand, how bad could it be?
Well, pain is subjective. A pain that rates 10/10 on a pain scale for one person may be a 6/10 for another. It’s been almost 4 years since my first surgery, and the start of the CRPS for me, but I honestly cannot really remember what it felt like to be pain free for a day. Not only does it affect my arm, it has other nasty side effects too. If I sleep for 2 hrs at a time, and more than 4 hours total for the whole night, I’m doing good. I was diagnosed with depression almost a year ago and am still in treatment now. There are some days when I feel so deep in the trenches, I do not know if there will ever be a ladder long enough to rescue me.
As I write, I sit here in Starbucks, freezing. I am so cold I have goosebumps on my arms, but it is nearly 30° C outside. I am shaking, literally shaking from the sudden attack of pain that just occurred, and I think I bit my lip so hard to keep from crying out that it bled a bit. And this all started with no warning, no cause, nothing. I have aching in me part of my hand, burning in another. Frankly, I’m a bit of a mess.
I recently found out that I will no longer be able to work. I have been trying to reconcile this thought with the massive feelings of disappointment and failure I feel. I feel ashamed about the way things have turned out for me. This was never how I saw my career, my life even, going. I mourn the parent I was to Q, the wife I was to M and the friend I was. I mourn the ability to joyously announce and celebrate my retirement. I mourn the things I never had the chance to do and probably won’t again.
I am desperately trying to reinvent myself, but how?
That, my friends, is the Million Dollar Question. How fo you start over when you don’t even know where to start? How do you find new pieces to a puzzle that no longer fits the ones you have? How can I be truthful with myself when I have to hide something that is such a big part of me now, away?
I fight to keep this side of my pain, my struggle, hell, my life, quiet and private, but why? I don’t want sympathy, but I do want people to understand what it is like too. If we all keep quiet about the tough stuff, more of us will continue to feel alone in our challenges and we are not.
Whether you struggle from mental health issues, body image, self esteem, physical pain, of any other number of things that we try to keep secreted away, you need to know that you are not alone. Maybe I can’t fully understand what your experiences are, not maybe can you fully understand mine, but we know how important it is to speak up when you are hurting. Maybe someone reading this is a fellow chronic pain or illness sufferer, or knows someone who is. And if that’s you, I also put together a list of ways to support someone in your life who may be struggling.
But today, as I desperately try to distract my brain for the surges of burning and the deep, deep ache that is encompassing my arm, I just knew that I didn’t want to hide behind my pain anymore. I heard a whisper in my ear that someone, somewhere, beside me needed to hear this.
So. Today is a tough day for me, and if it is for you to, know that you are not alone.