When I was a teenager I wanted nothing more than to be normal; with my super short, curly, mousy coloured chemo hair I stuck out like a sore thumb. Luckily in high school everyone was so wrapped up in their own lives and drama that people barely gave me so much as a passing glance on their way to English class. And I grew comfortable in my invisibility.
I was never the best at anything. I barely scratched the surface of good most of the time. But I was good enough at a lot of things and that has served me well for most of my life.
I know I have been gone for a while. About two months, actually. That’s a long time to be away from this website, you guys, and really myself. This website and my writing is an escape from this life I no longer feel control over and without putting in the work to keep my sanity, I instead get bogged down and the depression that I fight daily takes over.
I can’t let that happen again. I can’t.
So here I am, friends. Back and ready to work on this website and therefore myself. As you can probably tell I’m not very website savvy. I use this as a medium for my thoughts and writing only and just cannot for the life of me get interested in actually creating a fully functioning website. Thankfully I have some family members who are up on this website building stuff and so I’m hoping to rope them in to helping this website become more professional and pretty looking. If you have any suggestions please feel free to write to me in the comments or personally at email@example.com
I do also want to take a moment to share something that has been helpful for me lately. Something that I never thought I would actually enjoy and something that has helped me find some inner peace amongst the stress of spoonie life…. YOGA.
Now here’s the catch- I don’t do it really in a class or any type of instruction. I do exactly what feels right for me. I enjoy the meditation aspect of it and really value the positivity and endorphins that I get from stretching and listening to my body.
I recently received an email from my friend Sebastian who runs http://www.somuchyoga.com and they have published an article on the benefits of yoga for people struggling with arthritis (or other chronic pain illnesses). If you want to check it out (I recommend it) you can find it at Yoga for Arthritis.
It is important to check with your physician, physiotherapist or whoever is assisting with your pain management to ensure you’re practicing yoga safely. I did check with my physiotherapist and worked with her to make sure I was not doing more harm than good, and she seemed thrilled I was finding some relief from it.
It has really helped with my mood and I find my body is more relaxed almost immediately after my brief yoga time. It is definitely not a cure-all as I’m still struggling pretty hard core and cannot manage yoga daily, but I do find my little 10 minute yoga periods to be helpful! Definitely check out the website, article, and with your doctors to find out if yoga is right for you!
Aside from my yoga fun, I have gotten orthotics made for my shoes but I cannot bear to wear them often. But I know they will be helpful so I really need to put more effort in there.
I have found out that my knees and shoulders are hypermobile and my fingers are still deviating pretty badly but my splints have been so helpful! Definitely check out ring splints if you’re having issues with your fingers! They’re a life saver and super cute!
This is a question I have been asked so many times I have lost count.
Usually it is by able bodied, well meaning, friends and family members who live their typical lives full of work, chores, house buying, child bearing, and other excitement inducing activities. They don’t have a chance to be bored and can never truly understand what it is like to be stuck in bed day after day, week after week, month after month.
This question stabs me like a knife every time I hear it and awkwardly try to answer it. From the outside looking in I can understand why they would ask. They can’t really imagine what it is like to spend life childless, in bed with, in their minds, nothing to do.
I’ve spent a lot of time thinking about how I should answer this particular question and I think I am ready to share it, in case you’re ever asked this or have asked it yourself.
No, I’m not bored. I don’t have a chance to be bored. I spend my days trying to survive. I have The Hunger Games going on inside my body 24/7, and it’s a close game.
What may seem lazy to you is a marathon for me. I’m not laying around in this bed for fun. Trust me, it’s not. And my bed isn’t even really comfortable anymore because my side is all sunk in because this is where I live.
I can’t focus enough to even watch a new TV show on Netflix. I am watching the same 4 shows over and over again. I can recite full episodes of Grey’s Anatomy. I am pretty sure I’m a resident surgeon by now.
No, I’m not bored. I use all of my energy phoning doctors throughout the week. I get exhausted from playing Tetris on my phone or petting my cat too much.
No, I’m not bored. If I was I would get out of bed and do something. Boredom subsides when you’re physically unable to do anything.
Or maybe I was bored for the first while and it’s just part of who I am now? Either way, my day is pretty much mapped out by TV shows, medicine taking, and bathroom breaks.
I know it sounds like hell for you. Guess what? It is for me, too.
No, I’m not bored. Being sick is a full time job.
If you want to come over and take a look at my fun filled days you’re more than welcome to. When you get the chance to watch me curled up in pain you might be able to answer your own question, then.
No, I’m not bored. I don’t know the alternative anymore.
This is such a necessary part of spoonie life, but it definitely can be one of the worst parts. I am still learning the fine art of doctor-patient relationships but I will share with you what I know so far.
How to Work Effectively with Doctors as a Patient
Understand that doctors are people, too. Doctors are not miracle workers, usually. They are human, so remind them about your case if they forget and remember that they are (probably) doing their best.
Don’t expect too much. All doctors want their patients to have positive outcomes. It looks good for them if they’re helping their patients so they have a real motivation to give you the best care that they can. That being said, there is very rarely a magic potion to cure your ailments. They feel frustrated and disappointed when your treatment doesn’t work also. If you go in with lowish expectations you will have a better chance of being happily surprised, as harsh as that may sound.
Don’t quote things you read on the internet, unless it is a proper peer-reviewed article. This is a definite doctor pet peeve. It is good to research your symptoms and illnesses, but be wary of your sources. Scientific journals can be hard to understand but it is important that you find valid information before bringing it up to your doctor.
Be honest about everything. The good, the bad, the ugly. Some of our symptoms and side effects are pretty gross. Whether they be bowel issues or other unflattering situations, it is imperative that you share these and other concerns with your physician. They can’t help problems that they don’t know exist. Even things that you don’t think are important, tell them anyway. The more information the doctor has, the better the potential outcome.
Keep records of symptoms.
Doctors enjoy this. They need to know when the symptoms started, how severe they were, how long they lasted and what seemed to help them. These records help the doctor identify if they are side effects to medications or if they are a brand new symptom or a new condition altogether. Keep track of these things!
Be a patient patient.
This is something I’m still working on, as patience is a virtue I may have not inherited. I feel like I’m constantly waiting and always phoning and leaving messages for doctors. It becomes infuriating to say the least. That being said, try to not take your frustration out on the receptionist, nurse, or physician. It may not be their fault, and they will all appreciate your patience.
Kill them with kindness.
Going along with the patience, even when it may kill you, kill them with kindness. They will likely be much easier to deal with if you are pleasant with them. Remember that you have the power to change not only your day, but theirs as well. Change it for the good. You’ll never lose by being nice.
Thank them in writing. Writing a thank you card is always a good idea. If they helped you in a substantial way, it’s always nice to let them know you appreciated their treatment. It’s a classy move that may pay off in the future!
That’s what I have for today! Any other hints you think I should add?
Have a great day! 🙂
My name is Courtney and I ruin parties. I don’t do it intentionally. I don’t mean to draw attention to myself when I need to move because the pain shooting down my legs is unbearable. I don’t drop my cane on purpose so people feel sorry for me. Trust me, the pity is the absolute worst. I don’t leave early to be a buzz kill, and I certainly don’t avoid social gatherings because I’m a loner or a snob. My reality is just different than yours.
I don’t want to miss your wedding or baby shower, I would love to be there to celebrate these moments.
I don’t want to miss concerts or plays, these were my favourite things in the whole world.
The truth is that it kills me that I’m not able to attend places where my walker would be an inconvenience and I hate being the girl who has to call ahead to check for accessibility. The truth is that it’s embarrassing to constantly have to alter the room set-up for optimal comfort, and even then I have to leave earlier than everyone else due to pain, discomfort, or other health related reasons.
Chronic pain and illness makes me stick out like a sore thumb as I limp around and my eyes well up with tears. This does not feel like the girl I was meant to be, but it is the girl I am. I try to make the best out of every situation, but when awkward seating at a restaurant causes me to stand to finish my meal or my legs are squished during an outing with family, I am thrust back into the harsh reality of these illnesses.
I don’t want to rush people into finishing a meal they’re enjoying, or for people to feel bad as they see the discomfort on my face. This is my reality and as much as I try to hide it and make it not so, you are part of this reality also and for that I could not be more sorry.
So if I rsvp no to a future Facebook invite or a proper mailed invitation, I am not trying to be rude, I am trying to spare you and your guests from this reality. The reality of back cushions, leg lifts, mobility aids, and a rattling pill case full purse.
I wish I could be the fun loving chick I once was who could close down a bar like a whiskey shooting bad ass, but this is no longer something I am capable of. Now my resume boasts such goodies as “Netflix Aficionado,” “Pillow Setter Up Extraordinaire,” and “Snack Queen.” If you’re down with that, I’m here for you. In a couch, bed, or otherwise properly comfortable seating situation.
Before we get started, check out today’s Song of the Week for an awesome Bon Jovi tune!
Now, where was I?
I have been having a hard time deciding what to write about. Do people really want to listen to my inner ramblings? Is my writing any good, really? Am I helping anyone at all?
Even if the answer to all of those questions is a resounding no, should I stop writing? Another giant NO!
Writing is so therapeutic, whether anybody reads it, understands it, likes it, or not.
I am not an expert at anything other than being myself, but I have stuff to stay, I have a voice to be heard, and I write words to be read. Even if I’m the only one reading them.
When I was younger I wrote poetry about loves I never experienced, heart break I never knew, and poured out feelings I could only imagine. As I grew I matured in my prose, spilling out angsty tales of my parent’s divorce and my overcoming cancer. It was real, raw, and maybe a touch pretentious. I put away my pen and paper for a decade when I became preoccupied with real romance, education, working three minimum wage jobs, and living my life slightly recklessly.
In the last couple of years, as my body has failed me yet again, I traded in my pen and doodle covered notebook for the ease of a laptop and click-clacked my feelings for hours. That is how my journey into blogging began.
I realized quickly that there was a place for me in the sea of chronically ill folk. My folk. Folks who get me.
Folk is an underrated word.
Every time I experienced a symptom or encountered an awkward situation, or felt the weight of my illnesses about to crash down on my fragile body, I just typed the letters until they became meaningful words that only my people would understand. And they did. They responded so strongly I felt, even if only for that minute, like I was less alone. And isn’t that the point of this anyway?
Isn’t the point of writing, reading, listening, being alive, to connect? To realize we’re not all walking this earth alone?
It would be a huge disservice to ourselves and each other if we seclude ourselves and muffle our voices. Because you might have a story somebody needs to hear.
You might be the answer to someone’s prayers. You might be the one who can write the words to someone else’s story. You might paint the canvas of someone else’s life. You might lend a listening ear to someone who needs to share their soul. You might be the hope for the hopeless. You might be the one to inspire the world.
And even if you’re not, isn’t it worth a try?
Before I get into it, please check out the Song of the Week page for an awesome, fighting tune!
I am sitting here with throbbing shoulders, swollen fingers, and an aching head because what I’m about to write needs to be written.
I have fibromyalgia. It is not my only diagnosis but it is the most debated of my illnesses. I’m very lucky that I have an amazing team of doctors that believe in my pain and chronic illnesses enough to diagnose and attempt to treat said conditions. That being said, I know so many friends around the world who are not so lucky.
I have rheumatoid arthritis and because of that I already had a rheumatologist to diagnose my fibromyalgia. If I did not already have a specialist I wonder how long I would have been waiting for that diagnosis. My guess is I’d still be waiting, in agony, for someone to believe in my pain and help me. For a fibromyalgia warrior, or really any person in the world, living in chronic, debilitating pain with no answers and no treatment is not only maddening, it’s downright unbearable.
What makes it worse, is people telling you your pain isn’t real, it’s all in your head, or if you just exercise more or take this magic potion everything will be better. It is real. And there is so much evidence now to back it up that your argument is not only unwarranted, it is wrong and doing far more harm than good.
I remember the day I was diagnosed with fibromyalgia like it was yesterday. I remember what I was wearing (purple shorts and a white and purple t-shirt), I remember the doctors office and the tender point test (ouch), and where I went after and spending the rest of the day in a dumbfounded haze. What did this mean? What really is fibromyalgia?
These questions I’ve had to answer myself through experience, trial and error, and several unsuccessful treatment protocols. But I am muddling my way through it, like so many other fighters out there. And we are all in this together.
One of the things I’ve learned about fibromyalgia is how it can take one good moment and turn it into days of unrelenting pain. It can take one dedicated, hardworking person and turn them into a shadow of their former self. Everything you thought to be true completely flips upside down and you feel like you’re drowning, except nobody around you can tell. It’s absolutely isolating. But thankfully, I know I am no longer alone.
On this day, May 12th, we come together to celebrate our victories over fibromyalgia (however small they may seem to the typical person, we know they are monumental for us) and fight towards awareness, acceptance, research, and treatment. Our battle is not yet over, but united we will continue to push forward!