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.
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!
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.
I know I’m in pain, but you might have it worse.
I can writhe and close my eyes, but you have to watch it.
You glance over helpless or turn your head away, because this is something you can’t fix.
I’m not the girl you fell in love with, I may be a wreck now but you married me healthy.
If you want to leave, you’re not letting it show.
Instead you gather my meds and bring me to the doctors.
Trying to help the only ways you know how, and it’s everything to me.
I toss and turn all night, thrashing around in pain.
I may be keeping you awake as pain steals sleep from us both.
You may have it worse. Helpless, hopeless.
Pain demeans us both, in different ways.
I don’t know how you deal with this.
Watching your loved one suffer and fade away.
I’m half the girl I used to be, and you’re twice the man I could have ever hoped for.
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.
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! 🙂
Today’s not your day.
You’re not going anywhere!
Sit down and stay right there!
You have brains in your head.
That much is true.
But brain fog makes you doubt your IQ.
You’re on your own. Yet you need assistance.
This may be quite a sad existence.
You’ll look at Facebook posts from friends,
And see how their fun never ends
Their lives seem full of choices and opportunity
While yours is filled with immune system mutiny.
And you may not find any common ground
With people you used to hang around
Your life has been changed from the norm
It is like being altered from your original form.
But not all change is worthy of despair,
Because you have gained new insights to share.
Perspectives are altered as illnesses progress,
Managing medications and appointments in excess.
These allow you to grow in ways you couldn’t have expected,
A new experience with every hospital band collected.
And then your heart grows and grows
With each new spoonie you get to know
Ask questions and share your tale,
Of illness woes and medical fails
THE THINGS YOU’LL GAIN!
You’re on your way to chronic success!
You now have medical aids and Netflix to obsess!
You’ll join the ranks of chronic warriors
who never turn down a fight!
You won’t always enjoy this life,
You’ll cry tears of pain, exhaustion and fear..
But know you’re not alone in this battle,
Whatever you are going through, we are here.
The things you’ll miss are plenty,
From parties, concerts, and plays.
It seems unfair because it is.
But this is the chronic fighter way.
It’s not always the most fun, that’s for sure.
But what we lack in fun, we make up for in heart.
Sheer will, determination, sense of humor, and hope for a cure!
My revamped version of Dr. Seuess’ “Oh The Places You’ll Go”