I could spend this whole blog post apologizing for the fact that I haven’t posted anything in almost a year. I could fixate on the fact that my last two posts were basically me apologizing for my absence as my posting was pretty staggered to begin with. I could apologize, and I will, because I am sorry. But I also want to touch on a huge part of being chronically ill; the fact that we can rarely, if ever, make promises.
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.
Symptom 1 and Symptom 2,
This one’s old, that one’s new.
I thought my body was mine to rule
But it looks like I’m again the fool.
One thing goes wrong after another,
And I’m left attached, feeling smothered.
Brought to my knees again tonight,
Crying, aching, giving up the fight.
If I could sleep it might improve,
But late at night I cannot snooze.
Spoonie life is hard to take,
I may bend but I’ll never break.
ps- whoever’s photo I am using as the feature photo please let me know if you see this so I can give credit!
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 firstname.lastname@example.org
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!
Okay I’m done hiding now.
Here I am 🙂
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.
When I close my eyes I see myself dancing around my room getting dressed for the morning.
When I close my eyes, I’m back in my dream job, working my daily 9-5.
When I open my eyes I’m still stuck in this bed with a nightstand full of pill bottles.
When I open my eyes I watch the same shows on Netflix that I’ve seen a million times.
But when my eyes are closed I’m backpacking through Europe with my husband.
When my eyes are closed I’m doing cartwheels and handstands through grassy fields.
But when my eyes are open I am going to the same doctors appointments.
When my eyes are open I get my weekly injections and pray for no side effects.
When I fall asleep at night I dream of the life I could have had, would have had, should have had.
But the truth is, when I fall asleep at night I thrash and groan and cry.
When I fall asleep at night I dream I’m healthy. But I don’t have to wake up to know I’m not.
If I woke up to a healthy body, would I know how to live that way?
My pain-free life seems so long ago, like it was a different person entirely.
If there was a switch to turn off these illnesses, would I flip it?
Obviously. But I will never forget the lessons the pain taught me.
If even one of my conditions was one day cured, how would that change my life?
Drastically. Each illness has its own unique set of tortuous symptoms.
What would happen if this all went away?
I have gained such a great perspective and I don’t want to lose it.
If this was all a dream, it would have been a nightmare.
A nightmare that I would wake up from if given the chance.
But I don’t know how.
We all have them. It’s okay to admit that.
For me it feels like every other week is a flare. I’m not even sure how that is possible, but it is and it’s not fun.
I’ve begun jotting down some of the thoughts that go through my head when I am stuck in bed riddled with pain. Maybe you can relate?
This is it. I’m going to die. This pain has to mean I’m dying.
How is this amount of pain even possible?
This is it. This is my life now.
How many heating pads can I have on how many body parts at once?
Am I maxed out of meds now? Or can I take more?
My bed and my body pillow have taken me as their own. We are now in a polygamous relationship and I’m okay with it.
I feel like my teddy bear is the only one who gets me.
I can no longer cry. My eyes are swollen and I have no more tears left.
When was the last time I showered?
I’m not going to shower today.
I don’t remember what outside looks like.
There is an outside, right?
Life is pain.
Either I sleep all day or can’t sleep at all. There is no middle.
There is no comfortable position. There is only toss and turn and thrash and cry until you eventually pass out.
Why is my skin so uncomfortable?
When was my last good day? I had one at some point, right?
How long have I been in bed? 10 minutes or 10 days?
Come on, Netflix, I’m f***ing here! I don’t need this shit right now!
There will be another good day. There will.
Good Afternoon, Friends!
As usual, please check out the Song of the Week page for a rockin’ good tune!
Back to the good stuff, now.
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.
Thank You For Your Understanding,
Hello Friends, Family, Acquaintances, Awesome Readers,
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!