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perkreations

Honesty about creativity, art, mental illness, grief, feminism, human rights and chronic pain with a healthy dose of sarcasm

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visible didability

Love ๐Ÿ’– Recovery?

No matter how much I plan and pace and predict how attending an event will work, coping with the consequences never fails to surprise me with its intensity. I do my best to mitigate pain difficulties during an event and leave time for recovery but I’m not psychic so I cannot account for everything that might happen and how it will make me feel.

Myself (far right) with my girlfriends last night taking timeout in the beer garden to enjoy some sangria๐Ÿ’–๐Ÿ’–๐Ÿ’–

Last night I had the pleasure of attending Folk Fest with a couple of girlfriends. They were kind enough to pick me up and take me in the early evening, thus decreasing the total time I’d be there but still allowing plenty of time for us to have some fun and see the entertainers I most wanted to see.

Lately I’ve been saying, “fuck it, I’m going,” then figuring out ways of doing some of the things I most enjoy rather than being permanently sidelined. I consider myself incredibly lucky to have friends and family willing to take my special needs into account and help me to make the most of what I am able to do.

I think my new fuck it attitude has enabled me to enjoy life a little more but it has also had a direct effect on the time I spend out of commission during the time following. No matter how much care I take during an event I always know there will be time spent in recovery mode for several days after.

What does recovery look like for me? It’s not particularly pleasant;

  • Pain levels highly elevated
  • Decreased mobility
  • Extra time spent sleeping and feeling overly tired
  • Inability to do much beyond resting for several days. Recovery time needed depends a myriad of factors and I often find it difficult to predict
  • Feeling overly emotional, tearful, depressed, and angry
  • Difficulties concentrating
  • Difficulties completing simple household tasks
  • Increased need for pain medication
  • Headaches

In spite of my desire to try to take part in things I enjoy more I can’t help but wonder if it’s worth the inevitable painful recovery time. In spite of this trepidation I plan to continue to say, “fuck it, I’m going,” whenever I can reasonably do so. The joy returning to my life is, I think, worth it and will hopefully make me stronger in the long run.

If you suffer from a chronic condition do you have a, “fuck it, I’m going,” policy or something similar and if so what do you do to mitigate recovery time and still enjoy taking the chance to do what you love on occasion? I would love to hear your ideas and stories.

K

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Welcome to the Psych Ward

I’ve often alluded to my time spent in the psych ward for anxiety and severe depression but I’ve put off writing about it directly as it was an extremely difficult time. I’m still not sure I’m ready to talk about this but I’ll try.

This is me waiting in the secure emergency ward room. Note the word “useless” scrawled across my inner arm. This is a stark reminder of the other self-flagellating words I’d written in other places and the still bloody and red scars I had from harming myself with blades and flames. It is blatantly obvious to me now that I desperately needed to be where I was.

I’m going to break this story up into several smaller pieces to make it easier on myself and to make for easier reading. To begin with I’ll begin at the beginning. Admission.

I voluntarily asked to be admitted so I can only speak from my experience. I know others are admitted involuntarily for a myriad of reasons. Regardless, we must all wait our turn to be triaged through emergency.

In most psychiatric cases, including mine, not just any bed will do. A bed must open up in the secure area of the emergency ward, guarded by peace officers, void of creature comforts, and constantly surveiled via cameras.

This area is reserved for those on suicide and self harm watch (like me), others experiencing psychosis or other unpredictable psychiatric conditions, prison inmates or those under arrest needing medical attention, and any other patients who might cause harm to themselves or others. Bright side – you get a small private room.

There is one common washroom in the secure area I was in, no lock on the door, the words, “I died here,” etched into the wall along with a swastika which I attempted to turn into a peace sign. I left the words alone as they made sense to me.

I waited in this area for 2 nights the first time I was admitted and 1 night the second time. I consider myself very lucky as I met others who waited up to a week for a psych bed to open up.

Once a bed came available my belongings were hastily packed up and I was bundled into a wheelchair to make the trip to the ward that would be home for an indefinte period.

I cried and hid my face as I was wheeled along. I was sure I was being judged for taking up space and services I wasn’t entitled to. I felt there were others more deserving of admission and I was a lost cause anyway.

Upon arrival in the ward I was greeted by friendly nurses. They went through my belongings carefully, placing anything of value or that might cause harm, my purse, headphones, pencil sharpener, aresol hair spray, and nail scissors into a locker I could only access through a staff member.

I had to surrender my phone as nothing with a camera is allowed for privacy purposes and the environment is meant to be as low stimuli as possible. I would be able to use the communal landline on the ward or, once granted timed off-unit privileges, given my phone back temporarily.

I recall being completely overwhelmed by the co-ed ward at first. I could see into the high observation area behind the desk, a wall of windows penning acutely psychotic, violent, or destructively delusional patients into a locked ward within the locked ward. Many of these patients prowled back and forth, ranted and yelled, or pressed their faces to the glass, staring with glassy eyes and unkempt locks at anything and anyone.

I was told to wait in the common area until my nurse had time to give me an orientation and tour. I observed the other patients I’d be living with and grew nervous. I didn’t want to judge anyone, I wanted to be as empathetic as possible but I couldn’t help but be overwhelmed.

The ward was not just for the anxious and depressed like me. There were individuals pacing round and round talking and gesticulating wildly to themselves. Others sat and stared into space catatonically. I soon became familiar with the manic laughter of someone who cannot control their emotions despite trying desperately. It’s not a pleasant laugh… it’s hollow and pain filled and a little scary.

Some patients approached me and introduced themselves. One lady told me her entire life story within moments of meeting me. But she was kind and welcoming and I soon found that those I’d been unsure of because of their erratic behaviour were also wonderful people who’d just lost their way and needed time to rest and regroup…like me.

To be continued

K

Fun?

Conversation with myself:

“When was the last time you had fun?”

“I’m not supposed to have fun.”

“Really? And why do you feel this way?

“It should be obvious. I don’t work, I’m on long-term disability benifits, I suffer from chronic pain, anxiety, and depression. I can’t even keep my house clean. I don’t deserve to have fun.”

“Wow! That’s a really harsh perspective. If you met someone in the same condition as you and that person told you they felt as though they weren’t entitled to have fun would you agree and list off all the reasons why not as you’ve just listed them off?

“Of course not, but I have different standards for myself than I do for others.”

“Huh, so you’re a suffering snob? Sounds to me like you think your suffering runs deeper than other’s… is that it?”

“Of course not. I just feel like I’ve caused too many inconveniences for those closest to me for far too long. Actually I would wish for my friends and family to have fun without having to worry about me and if I’m comfortable or if I might need to leave early because I’m in too much pain.”

“Sounds like your friends and family want you to have fun. Especially since they go out of their way to make you comfortable. Do you agree they think you’re entitled to fun despite your disability?

“I guess I do. But what is it I should do for fun? How much fun am I allowed to have?”

***

Cut to me in early April when I see an advertisement that one of my favourite bands will be playing in Edmonton in mid-july along with another band I enjoy. I gleefully book tickets and subsequently panic.

I panic because it’s the first time in years I’ve planned to do something so frivolous, fun, and selfish. How could I have possibly have bought tickets to something far away, expensive, and taxing on my body.

Before I can give up and sell the tickets online. I decide to come up with a plan to make it work.

#1 I ask my husband if we can spend two nights in Edmonton so I have lots of time to rest.

#2 I ask that we take at least two short breaks on the road so I can walk a little bit and stretch out.

#3 Even though I have a number of relatives and friends I would love to see while in Edmonton I decide visiting will add too much bodily stress. I also promise myself not feel too guilty about this. There will be time for visiting trips in the future.

#4 I promise myself a week of guilt free recovery as I know the trip will be incredibly exciting, exhilarating, and exhausting. So I keep plans and appointments to a bare minimum and set my recovery time as a priority.

Our trip to Edmonton was great. We saw Counting Crows and Matchbox 20 and it was brilliant and totally worth the planning. I’m so glad I gave myself permission to do something fun after years of insisting on punishing myself. I’m also greatful for the planned recovery time๐Ÿ˜Š

K

Finished Another Mixed Media Peice

One of my favourite coping strategies for anxiety, depression, grief, and chronic pain is art. I started this latest peice about 2 weeks ago with one pencil crayon portrait of the late George Carlin. I soon found myself creating 6 more portraits to be part of a project about George Carlin’s 7 Dirty Words stand up comedy routine.

I’ve always loved George Carlin and how he looked at freedom of speech, of freedom religion, freedom in general and I couldn’t help but think about how freedom may be in trouble because of leaders like Donald Trump. The world already has too many muzzled communities, this is not something to lay down and accept.

I am happy with how the project worked out. I love how there is more and more to it the longer and closer it’s viewed. I also enjoyed the thoughtful meditation I experienced on an important topic.

I’m glad to keep painting as it has helped me start to see more value in myself, more worth. This blog has also helped me to grow and stretch in ways I didn’t think I would and I have started to gain self confidence.

What do you do to cope with mental health issues? I’d love to hear any thoughts you might have.

K

Recovery

This was part of my recovery and self-care plan for today after over-doing it yesterday ๐Ÿ˜Š๐Ÿ’– lol! It’s a great read.


I think others are worth taking care of… Just have to keep reminding myself I’m worth it too.

K

Pain Fog

Deciding to hit the grocery store yesterday may have been a bad idea but it was nessasary. The long weekend cleaned our fridge of fruits, veggies, and meal ingredients. So in spite of elevated pain levels I set out to pick up a few things.

learned yesterday that I shouldn’t be afraid to ask for help when I need it.

First, ordering from the deli turned into a ridiculously difficult task. I stuttered out my order in drips and drabs because I couldn’t focus on what I wanted. My back was hurting so badly I had a tough time trying to push and pull my thoughts to anything else. Fortunately the clerk was friendly and patient with me.

I almost went to the check-out after the deli but I knew I would just have to go back so I pressed on. Trying to make decisions about what to choose in the produce section became more and more frustrating as the pain ratcheted upwards.

I saw someone I recognized but I couldn’t place her through my pain foggy brain. I grew nervous I’d embarrass myself talking to her so I hid my face and hoped she wouldn’t notice me.

Later on I, rather ironically, dropped a packet of muscle relaxants because my hands tremble more and more as my pain levels increase. I then slowly, almost comically, squatted down to retrieve the box and decided I had enough groceries, which was good, ‘cuz I’d sure as hell had enough in general๐Ÿ˜‰

I made my way to check out and scared the guy in front of me when I yelped as a spasm struck as I tried to reach into the cart to pick up my items. I then fumbled through small talk with the cashier as I didn’t want to be rude. It was busy and because my injuries aren’t easily visible and I am young-ish, I didn’t want to bother asking for help carrying my groceries out.

I beat myself up over my poor decision to not ask for help and slowly pushed the cart towards the doors. I suppose it was fortunant I was slow though as a clerk jogged after me to hand me the card I’d forgotten.

I used all the focus I had left to drive the 5 minutes home. Carrying my bags in and putting things away was done in conjunction with a few tears and taking medication. After finishing I finally was able to rest.

Have you ever experienced the brain fog chronic pain can sometimes cause? What tricks have you found to combat this? I look forward to hearing any thoughts you might have.

K

Grieving Dramatic Life Changes

When I first realized the pain in my ankle would, likely, never go away I did my best to grit my teeth and continue my job as curling pro/manager. Then I injured my back and still kept trying to swim up stream and not give up the dream job I had.

Laying to rest the function of my ankle and trying to make peace with the long incision scar and ongoing nerve pain. The adorable slippers help make me feel a little better๐Ÿ˜‰

It broke my heart every day I wasn’t able to play the game I so love and care about. I also found myself having to avoid other high-impact excercise I had enjoyed previously such as, running, skiing, dance, boxercise, and step aerobics because the impact caused dramatic flare ups and I risked further injury. 

In order to invest the energy I still had into my job I had to spend more and more spare time in isolated recovery mode. I consoled myself with the fact I could still teach, I could still help others enjoy the game of curling.

I bounced on and off of disability a few times, always striving to claw my way back onto the ice. There were days I could scarcely stand, days where I struggled to walk, days where the pain screamed at me so loudly I couldn’t even think.

Eventually my performance at work reached a point where no matter how much I wanted to be the reliable, contientious, creative, perfectionist I used to be I couldn’t keep up and it was time to go back onto disability… this time for an indefinite period.

Doctors have told me it’s counterproductive for me to think of ever going back to curling as the sport only agrivates my injuries. I’ve been told, if I’m patient, I might be lucky enough for my back injury to worsen enough in the next 5 to ten years that surgery may then be helpful. Yippee!

I’m not writing about my lousy prognosis to gain pity (we all have our trials and heartaches) or to ask for any advice. I want to explain how it feels to grieve something in life aside from another human.

I didn’t understand for a long time why my heart ached so badly and why every time my thoughts drifted to my prognosis I wanted to somehow, simutanously, scream and cry and rage and close my eyes and never wake up. 

During my first in-patient psychiatric stay a very kind, and very smart nurse clued me in to the fact that grief isn’t solely reserved for the dead. She showed me books and articles outlining how we can also grieve loss of a marriage, a career, a friendship, health and wellbeing, a pet, independence, and many more personal heart breaks.

I finally began to understand exactly what I had lost and why it hurt so much. I feel as though, to this day, I grieve my Health and my career to some degree each day just as I continually grieve the death of my Mom. How much I grieve on any given day depends on what the world throws at me.

When I see an article about my former curling colleagues that reminds me of what I’m missing or I try to plan a holiday and remember all the travel contingencies I must plan for or around I my have more acute feelings of grief regarding my career and my health.

To cope with these feelings I have learned to get creative. I think of getting stronger both mentally and physically so I might peruse a new and exciting career that I find just as satisfying. In fact, writing this blog is part of my copeing strategy as well as a way to test if writing is something I wish to persue as part of my future. 

I also get creative with travel plans, specifically building in long rest periods, and usually travelling with a companion to take care of decision-making or driving, for example, if I get too tired or develop brain-fog from elevated pain levels.

If you suffer from chronic pain or any other dramatic loss and have experienced the grief that often goes along with it I’d love to hear your stories and coping strategies. Building community understanding is in itself a coping strategy. I don’t know about you but I could sure use, and would love to contribute all the strength I can to helping others and myself.

K

Does Disabilty = Disabled?

What does it mean to be disabled? Am I disabled? I’ve been thinking about this lable a lot lately. 

Sometimes I desperately want a category to fall into, to share a sense of community and camraderie, and at the same time I want to fight tooth and nail against being pigeon holed into a category I feel I have no right to be in. 

Having seen others with far greater challenges I feel false in placing myself in this category. The trouble is, how much does one have to hurt and struggle and strive in order to be classified as disabled? 

According to the government of Canada the definition of disability is as follows:

“Any severe and prolonged condition that inhibits a person from performing normal and routine daily activities.”

Does this sound like me? Hell yeah! 

I’ve been coping with physical limitations because of my back and ankle injuries for 12 years. I’ve also been coping with often debilitating depression and anxiety for 10 years. I have been unable to work for the past 6 years despite multiple tries to return to work.

So am I disabled? My insurance company says so. The government says so. My Doctor says so, although he believes it’s just a label the bean counters need.

Do I look disabled in the conventional sense? By this I mean; do I have a wheelchair or a cane or missing limbs or a straight jacket or whatever else society says makes a person obviously and believably disabled? No. 

Do I feel as though I can relate to those with visible and invisible disabilites? Abso-fucking-lutely.

I guess my point is, while my struggles are largely invisible they’re still very real. So I guess, as long as I don’t let the label define me, I can proudly take my place in a community full of passionate, worthy, contributing individuals.

I am disabled. So fucking what?!

K

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