Starting Out Spoonie?

Tips and Tricks of the Trade From One Spoonie to Another

Good Morning(ish) to you!
As always, give the Song of the Week a look at for some spirit lifting or good time tunes.

Before I knew what the term “spoonie” meant or the significance of spoon reservation, I was a free wheelin’ fun lovin’ University student. I worked full time while studying course overload semesters and enjoyed many a fun night out with my  girlfriends. Life was my oyster, so to speak.

It all came to a halt when chronic illnesses began to take over my body. I was no longer in control and the career and future I had planned on was not possible anymore. I felt lost. I felt utterly alone and scared. I began having panic attacks for the first time at 18 and had been free of them for years until the horrifying loss of bodily control saw them raging back, more powerful than ever. After what felt like decades of suffering, thinking I was the only one in the whole world who drew the short stick in life, I began a Tumblr blog to share my thoughts with whomever would listen. Not knowing what to do with Tumblr at the time, I eagerly searched for other blogs to follow and typed in “chronic pain”. This is where I first saw the word spoonie. Immediately I recalled hearing Christine Miserandio’s The Spoon Theory years ago and before I knew it I was YouTubing it again with new, desperate eyes/ears. Tears began streaming down my face as I connected with the words that I had struggled to find for so long.

Whether or not you relate to The Spoon Theory (some people simply do not like the comparison and have found other thoughts or theories they connect with more which is absolutely wonderful!) we tend to use the #spoonie name to find one another among the different Social Media channels. After my tangle with Tumblr (where I still occasionally blog/post/creep) I became quite obsessed with Instagram, and from there I began this website! I flirt with Twitter a bit and am working on connecting with every spoonie I can find! Spoonies stick together!

So You’re a Spoonie. Now What?

Once I found this community, the whole world changed. I found people who got what I was going through! I wasn’t alone in my “poor me, my life is awful” world anymore! I met people around the world who had a variety of illnesses and who were kicking major butt! My spoonie friends are strong as hell and more supportive than I can even say.

Six Steps to Spoonie Success

Step #1 when you begin to relate as a spoonie, find your people, find your tribe! Having this support is vital. They will help you in more ways than you can imagine. They will share their own tips and tricks and encourage you on your medical, spiritual, and emotional journey!

Step #2 is to become an advocate for yourself! I am in the process now of fighting for more referrals and getting appointment dates for doctors. It is stressful and exhausting; the life of a spoonie is not a particularly fun one as there is always stress on top of stress, but know you’re not alone! Doctors don’t always know what to do with us. It is tricky and sometimes takes years to get diagnosed with any type of illness (unfortunately), but stay on top of the doctors and fight for yourself and your health!

Step #3 is to understand that not everyone will understand your illness/es and that has to be okay. Sometimes family/friends/doctors don’t want to accept what is really happening. Some physicians don’t believe in several diagnoses (even with the mountains of evidence to the contrary). At times it can feel like you’re hitting your head against a wall trying to explain what is going on in your body, but you can choose to walk away if it gets too much. Let go of the toxic relationships and focus on the ones that support you and encourage growth. You have enough on your plate, you shouldn’t have to prove how sick you are to anyone.

Step #4 may sound silly but, find a hobby. Truly. These illnesses may keep you house bound and addicted to Netflix, but you need to find joy where you can. Write, colour, scrapbook, read, do puzzles, whatever your heart desires. I tried my hand at crochet but was unsuccessful. I did Tai Chi and was not the best student. I really enjoyed my venture into sewing and would love to get back to that! Give whatever you can a go! These illnesses take up so much of your energy and mind that we need some way to express ourselves being wrapped up in the weight of our pain/exhaustion.

Step #5 Make your life as easy as possible. Change what is not good for you. I realize you don’t want to be seen with a cane, but if it does more harm than good to go without it, bedazzle a walking stick and get over it. If the stairs are making you cry in agony, make the house as accessible as you can and if that means you need to move, so be it. I’m in the process of moving to a one floor apartment now. It’s heartbreaking but necessary for my health. If you can’t bend or lift, put whatever you need within reach. These things may sound sad and just a touch pathetic, but we’re all in this together and our lives are hard enough, let’s not make it any harder for ourselves. Also, take bubble baths. Do it.

Step #6 Find some local support as well! I’ve found a Fibromyalgia Support Group in my city and attend a Pain Management Group on Thursdays. I’m also a committee member for the London chapter of The Arthritis Society. It’s great to know what is available for you in your own city/town and what supports you can access.

I hope this helps in some way! I know how intimidating and terrifying this is. It’s a whole new world but you’re not in this alone…. I can show you the world…. hahaha

Love and Spoons!

Courtney

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To the People who Don’t Know How to Respond to my Chronic Pain

Dear Friend/Acquaintance/Family Member/Colleague/Stranger in line at the mall, etc.,

Good Morning!
I hope your day thus far has been well and that both your heart and mind are open as you continue on reading this letter.

I am used to getting looked at when my husband pulls into a handicapped spot, or when I am out with my cane or walker. It is hard for people to grasp a young woman in need of mobility aids; a second glance is a relatively natural response. The questions and comments I hear vary from day to day, but the most common one is “what did you do?” somehow implying that my disability is my own error because the only reasoning they can come up with is that I fell while drunk and in heels. It’s not a ridiculous assumption as I’ve had my own fair share of liquor-induced accidents, but the shape I’m in currently is in no way my fault.

For the most part I welcome questions and inquiries. It is better that you know the truth so that the look of shock or ignorance is spared for the next person like me you come across. I am definitely not alone here and there are millions of chronic illness warriors around the world who need any bit of advocacy and awareness I can spread, and I am more than happy to do so!

Here are answers to some of your pressing concerns:
1. These illnesses are chronic which means they will last an incredibly long time, most likely the rest of our lives.

2. We have probably tried every single “miracle cure” you’re trying to sell us. Thank you for your efforts (and we may bring them up to our doctors) but we don’t need to get your hopes up, or our own. I’m glad it worked for you sisters’ husbands’ friend but that doesn’t mean it will work for me.

3. I know I am too young to have these illnesses. But nevertheless, I have them and this is the situation. Neither of us needs to lament over this fact any longer, thank you.

4. Diet and exercise are important, no doubt about it, but if I didn’t need to take handfuls of life saving medication I wouldn’t. These are prescribed for a reason.

5. What we do need, more than your stares or medical advice, is a smile and for you to maybe hold the door open for us. Simple kindness goes a very long way! 🙂

6. If you see me stirring around uncomfortably in a waiting room/office/movie theatre it is most likely that I’ve been in a position too long and need to move. I’m trying to be inconspicuous and I apologize if I’m in your way but the pain is usually out of control and a little re-positioning goes a long way.

7. If you see me at home (yours or mine), you may see me taking all sorts of pain medication. No, I’m not addicted, these are necessary to get me through the day. Please withhold your judgement. I’m not happy about the situation either.

8. Yes, the mobility aids are necessary. They literally aid me to be mobile. If you’d like me to move Sally the Cane or Felicia the Walker are coming with me.

9. It can be incredibly difficult to watch someone writhe in pain and it brings tears to my eyes that you have to see me like this, but it is my life. I want to spend time with you and be the old me, I want it more than anything, but the new me needs you also. When I’m in this sort of pain please just let me be and maybe offer to grab my meds/tens machine/heating pad. I know you’ll want to help more but your presence and understanding are all I require.

10. Remember I’m still me. I am still up for movies/netflix/and gossiping all night long. I can rock a movie marathon with Sour Patch Kids like nobody’s business.

Thank you so much for all you do for us. I know chronic pain and illnesses are hard to understand- I still struggle with grasping all of these straws- but your willingness to stick it out with us means the world.

Please spread this to all your friends! Understanding is key!

Love,

Courtney

©chronicallycourtney

 

 

 

That Moment When

Good Afternoon Spoonies/Spoonie Supporters/Friends Who Stumbled Across My Page!

Here are some moments I’ve experienced and maybe you have, too!

That moment when you wake up in agony but can’t move to get your medication so you lay silently with tears streaming down your face until someone wakes up to get them for you or you gain the strength to reach your medicine dispenser. Read More

Try Hard

Before I get started, I’m going to remind you that I’ve updated the Song of the Week page! Check it out.. it’s a good one!

I can’t even begin to keep track of all the abilities and things I lack.. but I try hard.

I can’t walk, can barely stand, and more than once need your hand.. but I try hard.

Cooking, cleaning and holding a job, it’s my fault I live like a slob.. but I try hard.

Sometimes I cry and beg, plead, and scream and you remind me we’re a team… I try hard.

For days I can’t get out of bed and the pain is throbbing in my head.. but I try hard.

I can’t remember thoughts or words and this is something that can’t be cured… but I try hard.

You tell me something but I can’t recall, and you hold me up when I trip and fall… I try hard.

If you’re scared or worried about me you hold it back and don’t let me see.. you try hard.

You live each day to make sure I’m safe, and it’s hard on you to give me space.. you try hard.

You fetch my pills and bring me food to make me smile and help my mood… you try hard.

One day we’ll just be able to live, but until then my love I’ll give.. we try hard.

 

An open letter to my loving husband and friend.

Love, Courtney.