On TheProject3x5 all things are possible! So, let’s go back in time..! All the way to last week and the short post on my perfection of staying in bed. Remember it? I know, I know… I’m asking a lot after what was most likely a busy week filled with pain, stress, treatments, etc. But it’s important! Click here for a quick refresher. There’s backtracking to be done! Turns out I spoke too soon…
I promise in advance that all of this writing will in the end have something to do with pictures of horses and with me getting out of bed…
One of my very best friends, Danielle (go figure!), berates me in the best of ways with the A.A. Milne quote, “You’re braver than you believe, and stronger than you seem, and smarter than you think.” This token of hope, strength, and wisdom is an amazing little tool and a wonderful reminder to have in an ‘ill one’s’ back-pocket when nothing else will do… but at the end of the day, when you think about it and put the quote into context… we ‘ill ones’ ultimately don’t actually need it.
Why? Well, having a Chronic Illness, being ‘sick’, and/or clawing your way back from the edge (feel free to put this into context if you’ve never been ill but have had to work hard for something, have had some sort of trauma, anything you’d like…) has already allowed you to prove to yourself once and for all that you ARE braver than you believe - perhaps braver than anyone initially believed! For the record… that was not a calming experience, People! It was scary! You felt alone. But you made it through the tunnel and you’re out the other side. Or you will be, soon. After dark comes light.
You’re damn strong too! Satisfyingly so! I’ll bet you don’t even realize it, but someone out there most likely looks up to you. You’re a survivor. A fighter. You held on and look at what you made it through!
Perhaps most importantly, however, you are so much, so mind-blowingly much, smarter than you seem. Because on top of everything that you dealt or are dealing with, you made it through the awful brain fog. Hell, you may simply exist in the awful brain fog… but that’s ok too! You’re still a clever-clogs! Do you know how much your poorly little brain is still managing to do in the middle of a brain-weather nightmare? No one should expect that you’d be 100% functioning normally with all of this, yet you probably strive to. You’re smarter than you think.
So what’s this got to do with me, bed, and with pictures of horses..?
On my 7th attempt to get out of bed last week, Mr. A.A. Milne and all that his quote has stood for in my fight against CRPS/RSD, decided to kick my little butt into gear and remind me that I am indeed brave, strong, and smart. And though she was a continent away and no where to be seen, Danielle’s face seemed to hover reminding me that I’ve seen worse, I’ve seen better, and I’ve never been one to lay down without a proper fight.
My 7th attempt found me out of bed and on a friend’s farm.
There will still be days for now when I will need my bed - part of any strength in a fight like this also comes in knowing and accepting that - but thankfully, this turned out not to be one of them. The weather, the company, and the setting were perfect! And as my last weekend in Trinidad, I’m thrilled I didn’t miss out.
Sometimes things go spectacularly right. I could not have felt more blessed.
Lots of love, Danielle xx
Ps: Danielle is ironically fighting the fact that she has broken bones on both feet. Get well soon, Dan! xx
In Tobago for a much-needed break from ketamine treatments, hospitals, and the gloom of wintery days. Chronic Illness and the pain that it brings stands by me like an unwanted goon I can’t quite seem to shake… but I look up at the sun, give thanks, and do my very best to pretend that just for this little while, things are more than on the up :)
I’m incredibly sorry for the fact that there’s been a lack of posts! It’s a 3rd world island and the Internet is hard to come by (it’s true! I promise!) Bikinis, however, are in abundance… xx
You can’t connect the dots looking forward, you can only connect them looking backwards. So you have to trust that the dots will somehow connect in your future. You have to trust in something: your gut, destiny, life, karma, whatever. This approach has never let me down, and it has made all the difference in my life. / Steve Jobs
The above inspirational image + my water-baby life as a Trini together = the perfect metaphor for my life as a ‘patient’ (so weird!) actively attempting to live positively despite extreme chronic pain & a diagnosis of the debilitating neurological condition known as Complex Regional Pain Syndrome or Reflex Sympathetic Dystrophy (CRPS/RSD).
I’m not currently at home (I’m up in the States again for the ketamine infusion treatment, remember?), but I sure am longing for it! As today is Sunday, a day in Trinidad & Tobago that usually revolves around the water, often spent lapping up sunshine at the beach or out on a boat… Help me get over my (understandable) homesickness as we go ahead and take my metaphor quite literally…
Ps: All photos were taken post-accident, hence, post-diagnosis. So, I’m sure that many of my fellow CRPS/RSD sufferers will understand that due to the disease’s tortuous symptoms I’d rather stay curled up on a heating pad in bed, making it somewhat difficult to get me out of the house. Roadblock? Yikes! It would seem so, huh?
It’s unfair, difficult, and ridiculously bloody painful on top of what we already feel - but if you’re a CRPS/RSD sufferer looking for relief (like me!) studies have shown that continued long term exercise & involvement may just be the ticket (click here to find out why). If getting up and out of my bed is a crucial and distinct part of my healing process, I’m definitely gonna try my best to make it work - needing major inspiration along the way, of course…
*SO: LET THE FOLLOWING PHOTOS STAND AS A TESTAMENT TO THE FACT THAT PERHAPS THE OUTDOORS AREN’T OH-SO-TERRIBLE, BUT MAYBE ARE PRETTY GREAT AFTER ALL :)
Don’t leave me hanging though! If I can sometimes brave it, then you can too!
(So long as your healthcare professional agrees of course…)
We found this poor little baby leatherback turtle completely by chance in a nest that had been smashed in by hunters. He was totally crusted over by sand and on the verge of suffocation - however with a little love and care, he bounced right back and was able to be released. Keep your eyes open, it’s not necessarily always people who inspire!
(If you’re on the home page, click below to continue reading!)
The ups and downs of what has truly become a real-life medical circus ;)
I leave for Chicago & a dreaded 3-day ketamine infusion tomorrow. I’m seriously disliking this fact, yet I’m also trying my very best to positively visualize that it will all go incredibly smoothly.
Another procedure already? Why???
Well, since my successful Spinal Cord Stimulator (SCS) was implanted, to aid with the excruciating pain of my lower body - learn what an SCS is by clicking here! - I’ve had serious pain at the two incision points in my back (I already had CRPS/RSD in this area pre-surgery) along with general CRPS/RSD pain in my upper body which seems to be getting rapidly much worse. As the incisional pain is still generally quite new, my doctor has hopes that he can knock it out with the ketamine. Prayers for this, please! I always greatly appreciate (and reciprocate if I know about them) any sort of positive vibes sent my way :) x
The good news!
At the moment, I am SO happy with the SCS that I have. It took a while to get used to it, don’t get me wrong. I won’t lie to you, I HATED IT at first and found that I almost couldn’t feel the relief for the first few weeks due to the ridiculous muscular pain in my back that almost no medicine could scratch. Then of course there was the bizarre strange new buzzing feeling that I needed to adapt to. The device would be far too strong, and then far too weak. I was by no means an SCS Remote Control pro! However, my doctor asked me to stick it out, and as I’d gone through 3 surgeries (I’m sure we all remember the annoying fact that I had to have the device repositioned almost immediately?) I trusted him and listened. For that, I am SO happy.
If there’s one piece of advice I can give… listen to what my doctor told me (unless your doctor has told you something very specifically different. Remember… I’m not a doctor or medical professional!) and do the same! Also, unless of course you’re SCS is buzzing in the wrong places as mine was originally.
Of course, it’s important to note that my SCS does not provide 100% relief. Oh no!!! In fact, it doesn’t even provide 50% relief - but that was never promised or expected. Many may read this and wonder with such a big hassle and such little relief, why I even bothered… but to my CRPS/RSD followers, I’m sure they can understand. I wish that they could ALL experience my relief level of perhaps 40% on a good day. I may be in bed with a flareup at the moment and pain may still be a massive part of my life - but hope is back. This device has changed my life.
(Photo Credit: Boyfriend Josh, Post-SCS surgery: San Francisco Pride 2012)