“I’m not angry, either. I should be, but I’m not. I just feel pain. A lot of pain. I thought I could imagine how much this would hurt, but I was wrong.”
― Haruki Murakami
You may have noticed things have been a little too quiet at this Tower. Just about now I would likely be writing an apology to you, for my absence, disappearance, setback, and distinct lack of royal presence. Offer you an explanation for the rolling tumbleweed-like nature of this royal abode’s offerings…
Do what so many of us who live with complex chronic illness and relentless chronic pain do when things go wrong, and the pain flares viciously—apologise.
Say that we’re sorry for [insert pain/symptom caused catastrophe here] even though we know these things are so far from our fault. Though in light of a recent post on the Tower’s Facebook page inspired by another by Life in Slow Motion, which advocates the opposite of just that (shared below), will stay stum.
Save to say sorry in a more sentient sense, as each night have longed for this setback to simmer a little, for the dystonic limbs, and pain to loosen in their grip, so that I could use my hands again, think again, leave the bed again, and write again unhampered by the capricious whims of dictation software, nor capricious whims of CRPS.
Most of all, continue creating things I hope bring you comfort, support, and ease some of the pain, and catch up, reconnect, and reply to your heartfelt messages, and comments, on Facebook and Twitter, but since mid-NERVEmber, it hasn’t simmered one bit.
As with every complex and chronically painful condition when it flares-up, life is stripped to its barest bones, only the most essential acts to get through it. So perhaps saddened is a better word. Though even in the greatest pain, and most debilitated state, always try to keep Facebook and Twitter as filled as princessely possible, and I hope comfort anyway.
So instead of saying sorry, sharing this apt and popular post from the Facebook community page that resonated with so many:
I'm sorry I can't make it. I'm sorry I let you down. I'm sorry I'm in too much pain to continue or leave home. I'm sorry…
Posted by The Princess in the Tower on Monday, January 18, 2016
There’s a post in progress I’ll press the instant I can so hoping it’s more hiccup than hiatus. The CRPS is just being a little bit too vicious at the moment so just trying to get through it. Wishing you far kinder days in number, comfort, and support too. Gentle hugs x
Gentle hugs x
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[…] — is a process we must learn again, and again. Extended flare-ups and setbacks, like the one I’ve been caught in these last six months, are without doubt the hardest part of living with the unpredictability of […]
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[…] all too well just how abruptly things can alter, however momentarily, and though I know we already apologise far too much when living with chronic pain and illness, because of its unpredictability, because of its ferocity and flares, and the swiftness with which […]
I hope you start feeling better, this disease is so hard. Warmer weather is around the corner and I know that helps me, I hope it helps you too. We have to remember to take care of ourselves first (I know easier said then done). If you ever need anything, I’d love to help.
Bless you, Elizabeth, such a kind message ♥ Am finding it terribly hard at the moment, but have a feeling you know that! I’ll email you. Gentlest hug ♥ x
I’ve recently discovered your site, and I wanted to drop you a note. First, I hope things ease up on you soon. I know it can feel like forever when it’s really bad, especially because in some senses it is exactly that. Second, thank you so much for all of your words. Reading through them has been a deep comfort. Sometimes I learn new things. Other times I’m seeing information I know, but hearing it in someone else’s voice is a validating experience. I’m not alone in thinking so much of this crazy stuff!
By way of those odd introductions folks like us do, I mainly suffer from RA and AS, severe fatigue (probably from those two), and migraines. There’s some OS in there, too. That whole mess means pain is a constant companion while I’m trying to be a mother, wife, daughter, friend.
Thank you again, and be as well as you can,
Maggie
Thank you so much for your kind comment, Maggie. Your so welcome of course. It gives me such joy knowing it helps and resonates. Though also thank you for your kind words and well-wishes. Gentle hug ♥ x
Princess, you give so much to the wider community. Your website is a veritable treasure trove that inspires hope. I hope you are able to utilise some of the strategies you have shared to help ease your flare-up. take good care, Jenny
Bless you, Jenny, thank you for your kind words, truly. These comments are making me a little teary! Never known such a long setback but I will, and thank you. It means a lot. Gentle hugs ♥ x
The weathers been beating me up a lot lately as well and causing a lot of bad flair ups that’s actually how I found this I was looking around online because I feel alone I try to explain crps to my friends and family and they try to understand but they don’t and I hope they never have something comparatively wrong with them because it feels like a living hell I hope things get better for you knowing that there are others out there that go through this too has been helping me today thank you for your posts and doing what you can because it made a big difference for me tonight
Thank you, Michael. So pleased you found it at the right time. Touched by your kind comment too, thank you. CRPS is truly beyond what I ever could have imagined. It is so far from normal understanding, it’s near-impossible to articulate, even understand ourselves, much less explain to others. Just in case you didn’t see, here’s a page and post on CRPS. Even if you know all already, sometimes helps to see it again:
Complex Regional Pain Syndrome CRPS/RSD http://buff.ly/22C2F5M
How To Manage And Treat Complex Regional Pain Syndrome For CRPS Awareness Month http://buff.ly/1ZCVLrK
Wishing you far kinder days. Gentle hug ♥ x
I’m originally from Ohio but currently living in Arkansas and tentatively planning to go back to Texas or Florida where it’s year round warmth. Wrapping myself in a heating blanket only works when I’m not having to drag myself to work when every movement is agony and all I really want to do is cry. As inspiring as this site is, you are the soul behind it and everyone here should understand any delays you have.
Bless you, Samantha, so touched by your comment…❥ That means so much. Gentle hug ♥ x
Princess I hope you feel better soon , I’m having a flare up its a nightmare and you feel guilty being off work your colleagues pretend to understand , so nice to hear from others on your page who are in this predicament and not thinking you are mad . When I have really bad flare ups it destroys my way of thinking like I don’t want to be here I have no social life can’t plan things have to take each day as it comes I feel a failure . Thankyou for your page so I can relate to others I’m sending you ?? and a gentle hug x
Sending you the gentlest of hugs, Marlene. It can and does affect every aspect of living and though it can be so hard to remember in such times as these, pain and especially flare-ups and setbacks that magnify that pain, also magnify these difficult feelings. Pain can take away our vision, make us lose our vision, and more swiftly than all else, especially if housebound or bedridden. However, feeling a sense of failure in this, though I can relate deeply to your words, is never failure in the true sense of the word for you’re doing all within your power to manage, heal and cope (healing being quite different from curing). It’s vital to remember that. Know you’re not alone. I’m still steeped in flare and know it’s the hardest thing we go through but wherever you read this from, thinking of you, sending you blessings, strength and gentle hugs ♥ x
I live in cold Canada and am new to crps in the past 4 months which visited me immediately after knee replacement surgery.
As I already had AS and Sjogren’s and some other nasty life threatening ailments, this feels like the last straw. I am now wearing a neoprene bootie to go in a warm pool once a week to tread water to keep myself moving. Thank god for diclofenac gel with gabapentin and amytryptylene
in it. I would have lost my mind by now. The hot water bottle, and soaking my foot in a warm pail of water each day, buys me about 4 hours sleep now. I got absolutely no sleep the first month while the medical establishment left me in severe pain.
I applaud you all for trying to reach out to others despite what the McGill pain scale determines is the worst pain anyone could have. Just print out that pain scale and show it to family, friends, and employers. Perhaps the visual will demonstrate what is impossible to explain.
To all of you, I sent a very warm hug on a gentle cloud, to carry you off to a moment when the pain ceases to exist.
Thank you so much, Marianne, for your kind words and comment. Sometimes people do need a visual image like the pain scale to articulate what is essentially impossible to convey; I really hope that helps your loved-ones understand a little more. If you’ve not see, you may like to print out this open letter on CRPS. Also see coping and managing CRPS tips here, and more info on CRPS here. Warm hugs on a gentle cloud (love that ♥), and here’s to far kinder days for us all. ♥ x
Has anyone heard that taking 1000 mg of vitamin C a couple of months before surgery helps to prevent crps? Why don’t surgeons tell us this?
Has anyone tried this to lessen the flare ups now that you have crps?
Hello Princess! I have CRPS and this topic comes up in our CRPS support group from time to time. We made a “no apologies” rule, at least for during group! People apologize for things like shifting in their seats, taking a break or talking too much. Good reminder, thanks. Wishing you and your readers days with less pain! If you haven’t already, please visit my site at https://www.ElisaFriedlander.com/blog
Ooh I love that, Elisa. Wishing you and your readers likewise, and of course I’ll check out your blog <<>> Thank you so much for your comment as elated to read your articles and offerings. 🙂 So your deepest love is writing (check) you’re living anyway in spite of CRPS (check), and all about helping others? (check) What wonderful resonance! It’s a joy to connect with you. <3 x
Hi, I’m stopping over from Life in Slow Motion, and just seeing this post for the first time. Thanks so much for how much you shared my writing recently. I see from your Facebook screen shot that you were the reason that post was read so many times recently!
After I wrote that post, I thought further and decided that instead of saying sorry, I am choosing to say thank you in its place. Instead of “sorry I can’t go” I try to say “thanks for understanding.” Instead of “sorry I’m so useless” I try to say “thanks so much for taking care of it.” It has been such a huge difference in mindset for me, and has helped me so much. I am so glad you are taking a break when you need and that you are doing it without apology <3
You’re so welcome, Esther. Your blog is fantastic, a treasure trove of info, and support, and this, like so many of your offerings, resonated deeply. I love that approach btw! Thank you has a completely different feel for everyone involved. It’s light, saying sorry always feels so weighty. Thank you for understanding my delay. 😉 At last slowly escaping what ended up being quite the longest setback in years so though tardy, so happy to read your comment. Here’s to far kinder days for us both, and all without apology. <3 x
There are certainly a lot of details like that to take into consideration. That’s a great point to bring up.
Thanks for sharing this nice article. I read it completely and get some interesting knowledge from this. I again thanks for sharing such a nice blog.
Your blog is very nice and I like it your blog keep sharing with your new article.
Thank you! Appreciate your kind comment. 🙂
I read your article you shared really good knowledge with is very useful foe me.Thanks for sharing this nice post.
You’re welcome, Bala. Thanks for your comment! 🙂
Hi. I’ve only recently discovered the princess in the tower and I LOVE it ( :
You have said so many things that I relate to and I find your thinking and attitude very refreshing. I’m printing out some of your articles on different topics so I can think about them and maybe apply the things I can manage right now.
I relate very much to the whole ‘sorry’ thing. I sometimes feel like I’m apologising for existing. I feel less alone thanks to this wonderful place you have created.
So thank you. And wishing you healing and rest and all the things you need to recover from this terrible time you’ve been having. I think you’re wonderful.
Thanks so much, Jenni, so lovely to read your comment ( : Truly long to do more (this flare left me with far more CRPS spreading esp. in hands) though equally, warms me to the core to read such kind words, that this brought you a little comfort. No one says just how much time you’ll spend apologising with C/Pain & C/Illness though I’m so glad you discovered this place, that it makes you feel less alone, for you’re not alone, and grateful for your healing wishes too, thank you. Gentle hug ? x
This website is awesome and i know i didnt find by accident as i feel you have taken the words right out of my mouth. I am 32yrs old and have an 11yr old son and ever since Fibromyalgia (June 2015) and Rheumatoid Arthritis (September 2015) entered my life, it has changed drastically, we’ve been through a lot and I have been trying to learn how to cope and function to do the things i used to before all this. Sometimes i feel like i cant take this anymore amd dont know what to do. In searching to educate myself i found this website and started reading the isolation and loneliness part and then the rest i felt like you were looking in inside my head and for the first time felt understood. Thank you for the wonderful job you are doing for people that live in pain 24/7 non-stop. It’s nice to come across things that let you know youre not the only one out there that struggling with this and motivates you to keep fight and not give up.
Thank you, Ana, for your kind words and comment. Elated you like the site, saddened you know first-hand what it is to always be in severe pain. Sometimes it helps just knowing you’re not alone in this, that there are others, however far flung across the planet, enduring the same degree of pain and loss, the same depth of sadness, isolation and loneliness, the same churning questions and fears, though equally that each of us are warriors, already surviving far more than even we could have imagined, and there’s strength in that, in one of the most courageous communities of all. I truly hope you find a little respite, no matter how humble, a little joy and calm in the chaos, and many more ‘better’ days too. Gentle hug x
Thanks, great post. I really like your point of view. A few months ago I tried PeaPlex from RS4supplements.com and PeaPlex is very helpful, therefore. I now have a lot less complaints