Introducing the me underneath it all…
I usually don’t write much about my disabilities and my problems with pain anymore, but I’d like to step into that area a little for the sake of participating (for the very first time) in a blog “carnival”. One of my favourite new blogs, Graceful Agony is hosting the carnival and the first topic is “Let me Introduce Myself”.
For me this is an interesting topic because I have changed SO much since I started suffering from chronic pain that I feel like I’m introducing a whole other person. On the surface, I appear the same, but there’s another “me underneath” that only a few people ever see or hear from. Usually people only see that I’m a busy young mom with a home and family to take care of. We enjoy a beautiful home that makes people say “you’re so lucky!” but I can only think “if only you knew…“…
If you can look beyond the exterior of my upper-middle class family environment (with a supportive spouse, two relatively-healthy kids – a boy and girl, and a nice new house in a great family neighbourhood), my youth and attractiveness (“you don’t look like you’re hurting that much!” or “you’re too young to be this disabled”), my seemingly-set-for-life career possibilities (a couple of university degrees, a glowing CV), my talents and abilities, my previous fitness level, my previously sharp brain and amazing memory, etc.!, you’ll see a different picture entirely than what you expect:
That spouse is suffering so much because of all the household tasks he’d had to take over, despite suddenly becoming the only one with an income. Those kids are not so healthy anymore – they don’t get nearly as much care and attention (or even as many baths!), they have to eat lower-quality food, they had to drop all of their extra-curricular activies (either temporarily or permanently). Even though I may still look pretty darn cute (if I do say so myself), I hide my pain and exhaustion well, and it takes extra rest and sleep to even begin to be able to be up and about. You’d only generally see me on a “good day” anyways. Those degrees are gathering dust as I turn down every job offer that comes my way. Even the company that I started has failed to generate any real income because I just can’t sit up at the keyboard often enough. That sharp brain has dulled to the feel of a rubber eraser and the memory is about as reliable as a great-grandmother’s… many many medications will do that to a person. That body the used to be fit and able to take a 45-minute Spinning class is now heavier from carrying out a forced routine that is more sedentary. It is inside that body is where you’ll see and feel where all these changes have come from…
Unlike some people who’s pain seems to come from either injuries or a condition that magnifies the pain signals and sensations that the nerves and brain receive, I seem to be still experiencing pain from both! After my first time getting hit by a careless driver (in 2000), doctors found a damaged spinal disc around C4 and after my 2nd time getting hit by someone not paying attention (in 2008), they found a damaged spinal disc around L5. This lower disc seems to be part of the problem I have with sciatic pain (a sharp shooting pain that runs down your buttocks and legs). This has impeded my walking so much that I’ve had to bring myself back up from the severe level of basically living in my bed and bathroom (picnic meals and all!).
In addition, the second car accident triggered a post-traumatic pain syndrome (identical to Fibromyalgia except for it’s different onset time-line and source). So the pain of these injuries and any other sensations of pain (or even touch and pressure that is confused with pain) is magnified by my screwed up nerves and nervous system. So any “everyday” thing that I used to do without pain is now painful. Anything that used to be a little bit painful is really painful. Anything that used to be really painful is just excruciating. And so on. Since that last accident, I have not had a single moment without pain. Since the first month after the accident, my headaches got worse and worse until now they are so constant that I have not been able to catch myself without a headache in months and months.
This is absolutely still so unbelievable to me; I hadn’t know it was possible to go so long with so much pain! But it’s what I live, day in day out. I would love just a *break* even at this point! Like maybe just a day or two without the pain so I could have a taste of what comfort feels like again? I’ve given up that it’s ever going to happen but I’m still working to find things that improve my levels of pain. I’ve tried a ton of treatments (anti-inflammatories, narcotics, physio, massage, chiro, acupuncture, injections, other meds, vitamins, exercises, aqua-fitness, walking, ignoring-the-pain-and-just-barging-through-it, diet changes, off-label use of certain anti-depressants, etc.!). Nothing has done more than put a dent in the pain. I currently am combining about 9 different therapies/treatments at once to be at the level I’m at – which is finally being able to shuffle around a bit more comfortably at home but only last through the day if I get an extra 2-4hours sleep (on top of what I sleep at night).
It’s a pretty miserable life, but I try to add what I can to it. And of course I always appreciate my blessings – my spouse and children and friends and home and other nice privileges that I get to still enjoy. I haven’t lost hope for better days ahead, but I’m becoming prepared for the fact that I might not get anything better than what I’ve got right now.
So I guess that’s me in (a little more than!) a nutshell! I’m eager to read the other posts in the carnival and maybe make some new contacts as well. I don’t know the other readers of Graceful Agony too too well yet, since I only discovered the blog earlier this year (and have only just recently found out about and joined the associated community). I believe I found the blog through a link posted to a Fibromyalgia group I belong to online (either it was the link or it was linked on the blog that was linked to… I’m not sure because really sometimes you can just keep following through and hopping from site to site!). I’m certainly glad I did because I have a lot in common with the woman behind that blog, and I relate so so well to those words “Graceful Agony”. It is such a perfect way to describe this unique position we find ourselves in – trying to live with chronic pain…
At first we are struggling with new-found knowledge about what we might be facing, and then slowly we come to grips with the reality of it all. Depending on your condition, you may have a different “fate” but with those of us who suffer from Fibromyalgia, post-traumatic fibromyalgia, and similar conditions, it is almost certainly a life sentence. It has been very helpful to me to try to learn how to cope with this pain in a way that still allows me to live, as I adjust to no longer being in limbo and waiting until I’m all better in order to start my life back up again. It has taken me about 1 year and has brought with it a lot of depression, but I think it’s better now that I’ve reconciled myself with what lies ahead. It’s not an easy thing to face (especially with those around you saying “oh you’ll be fine, just give it more time!”), but when you do come to grips with the terminal nature of your pain, you can at least shift your expectations. When you’re no longer focused on becoming 100% recovered, you learn to fine-tune your experience of pain as much as you can. You hope for any small improvements. You change your surroundings to suit your new disability instead of hitting the pause button on everything until it goes away. You learn how to do things differently, you start to be able to speak differently and express what you’re dealing with to others. You recognize what your limitations are and become better able to work within them. You naturally adjust your life rhythms to what you’re up for – building your day around planned rests or unplanned “crashes”.
Thanks for reading about the “me” under the exterior I tend to project, and I hope it has helped you understand more about what goes on for someone experience such severe levels of chronic pain! I don’t know what the theme is for the next round of the blog carnival, but I do have another blog post prepared anyways about coping with pain through your favourite activities (in my case, all the creative endeavors that you see on my blog!) so I hope to see you again for that entry!
Gentle hugs going out to those that need them! 
ETA: Here is an image button that links to the Blog Carnival round #1 post. If you guessed that I created the button, you are right of course. 
August 08 2010 07:00 pm | pain / disability
August 9th, 2010 at 3:28 pm
Kris this is really touching. I think I joined YM after your 2nd accident and didnt really know much about it. I can’t say I hope you get better because as you stated you have tried everything so I hope you find something in your search to being able to go back to somewhat normal. *hugs*
August 9th, 2010 at 4:58 pm
thanks Keshia, yes that’s totally what I’m really hoping for! I have a big list of “things to try” and I’ll just keep going down and down as much as I’m able to until I hit on some things that provide some substantial relief!
August 15th, 2010 at 5:14 pm
[...] family in spite of her chronic pain. She has taken a big step on her site and introduced herself, Underneath it all. I laughed out loud as I read about others judgments on being a stay-at-home Mom. ‘You [...]
August 15th, 2010 at 6:55 pm
Kris – Great job! I feel like I’ve known you forever!
I, too, developed FMS from a car accident and spent years in the kind of pain you are describing! It is a miserable way to live.
Fortunately, I discovered upper-cervical chiropractic care and an herb called Phenocane and that was the ‘magic’ combination for me.
I’m not pain free but I’m not at the 9-10 range every day anymore. Most days I am at the 5-7 range which, after 20 years, I have somehow learned to cope with.
I also don’t have a husband and children and I do think that makes my life much easier.
I want to thank you for sharing your intro. You did a fabulous job! I think you should be very proud of the fact that you are raising two amazing kids, still married and are meeting each new day with tenacity! That in and of itself is amazing!
August 15th, 2010 at 10:29 pm
Great to meet you! I look forward to following now! Thanks!
August 16th, 2010 at 8:17 am
Kris-Thank you for sharing so much of yourself. Illness is especially hard when you have a young family…I admire your management!
~Sheila
August 17th, 2010 at 10:45 pm
Nice to meet you, Kris. I like the badge you designed for the Graceful Agony blog carnival. With your permission, I’d like to add it to my blog.
Thanx for sharing!
August 19th, 2010 at 9:12 am
[...] If you’ve read my recent post Introducing the me underneath it all…, you know about the Blog Carnival happening at Graceful Agony, a chronic pain blog I read. The [...]
August 19th, 2010 at 1:45 pm
Thanks for the encouraging comments, my disability has been really hard on the family so every little bit of help to keep us moving forwards is appreciated. We’re now trying to just drag ourselves back up onto our feet again and try to recreate what a “normal family life” is for us.
I’ve sent the badge code over to Jolene, so hopefully it will be posted soon, but yes of course it is for all of us who are participating, and I offered to host it for the group. So just copy the image location, add it in an image tag, and link that image to the Blog Carnival post for Round #1!
August 22nd, 2010 at 8:55 pm
Hi Kris, I just want you to know that I know some people that can help you. Not all Chiropractors are the same so even though you’ve tried Chiropractic it does not mean that it can’t still work for you. I would like you to get a hold of Hunt Club Chiropractic and ask to see either Dr. Ed Quirk or Dr. Yurij Chewpa. They are amazing Chiropractors with very large hearts. Thay CAN help. Just let them know that Dr. Jeff from Calgary sent you, they will take amazing care of you. Even if you’re skeptical, it’s worth a shot! But they will help.
Just to let you know, Nicole O’Brien sent me your blog and I read it. She asked if I knew someone who could help. And I did.
God Bless,
Dr. Jeff Koep