"Where there is creativity, there is hope." ~ Donna Karan

Sunday, December 30, 2018

Redefining ''This will be my year"

Image credit: Fit Girl's Diary

Since illness interrupted my life, New Year's Eve has always been tough on my mental health. I approach the holiday with dread rather than excitement and hope. It's fraught with overwhelm, panic, anxiety and disappointment. I'm reminded of another year lost, the things I couldn't achieve, and opportunities I had to let pass me by. Suffice to say I kick off a new year already feeling defeated.

Several years ago at the start of a new year, a church leader prayed for me. They prophesied that that year would be my year- I would go back to university and achieve all that I wanted to. It was going to be great. I believed things would be exceptionally better for me that year so it crushed me when it turned out to be one of the worst years of my life.

Ever since then I've been hesitant to expect great things, and I've become fearful of goal setting because I feel like I'm only setting myself up for disappointment and heartbreak.
But at the beginning of this year, I had an epiphany in an Aldi car park that changed that for me.

I flopped into 2018 feeling worse for wear. Endometriosis pain was becoming difficult to manage, and I was trying to find answers why the disease was causing some terrifying symptoms I had never experienced before. I knew things weren't right with my body and I knew the disease had come back worse and was growing in places it hadn't before. As a result I also knew I'd probably end up needing another surgery to remove the lesions (turns out I was right), so health-wise I knew this year would not be my year either.

As I was driving to Aldi for some groceries, I felt overwhelmed at the thought of battling another year of chronic pain and fatigue. Facing another year of the same hard struggles was depressing and terrifying. And I felt powerless.

Another year of struggling to keep a clean home and suffering for having any kind of fun. Another year of feeling like I'm dying after cooking a healthy meal. Another year watching my life slip through my fingers. Another year sacrificing for my health and saying no to things I want to do. Another year stumbling through bad days peppered with pain, physical fatigue and debilitating cognitive dysfunction. Another year navigating the healthcare system and searching for better treatments. Another year dealing with health professionals who don't understand fibromyalgia and chronic fatigue syndrome. Another year enduring post-exertional malaise after the simplest of tasks.

How am I going to do this? I don't want another year of this, it's too much. And I am so, so tired.

But then as I was sitting in an Aldi car park trying to muster up the motivation to do a grocery shop I had a thought... 

What if it could be my year in other ways? What if I'm looking at things wrong? 

I realised that since getting sick I've always defined how good a year is by my health, and usually it's bad, so it's no wonder I'm feeling disheartened at the end and beginning of every year! I have been so unfair to myself, and if I keep judging a year on my health, then no year will be any good.

So I decided to approach 2018 differently and redefine my definition of ''This will be my year.''

Unless God healed me I had to face that I wouldn't be better this year either. In that moment of acceptance, I found a strength and joy I hadn't felt in years, and I realised I wasn't entirely powerless and that I still had choices.

I can be strong, brave and kind. I can be open to what God wants to share with me and be a blessing to others. When a song I like comes on my car radio while I'm on my way to a medical appointment, I can turn up the volume, sing (out of tune) and choose joy at that moment. I can be thankful for the small victories and celebrate them even if it's as dull and minute as unloading the dishwasher. 2018 can be a great year if I change my attitude and outlook. It will be different to a healthy person's definition of great, but that's okay.

I've taken a hiatus from New Year's goal setting for quite some time now because years of unattained goals left me feeling dispirited. But after my epiphany, I felt empowered to establish a better relationship with goal setting. I finally felt ready to overcome my fear of goal setting and felt a surge of excitement about setting some realistic goals again. 

The past few years were a complete write-off. Focusing on recovering from depression caused by pain medication and surviving side effects of some alternative treatments was all I could do. So it felt about time to apply some structure and direction to my year and have goals to aim for so I can optimise my better days.
Laugh at my photography guys, because it's hilarious! At least I'm trying though, right?

I grabbed my Kikki.K Goals Journal and got to work. While working through the journal I discovered that I need to do a better job at making and achieving goals more fun and rewarding. This is paramount when living with illness.

While I set my goals with intention, I promised myself that I would treat myself with kindness if I didn't attain them because I am no longer evaluating my year solely on achievements and health status. By not imposing specific time frames for my goals, I've taken the pressure off myself. Giving myself just one year to complete several goals is unrealistic for someone managing chronic illnesses around the clock.

Prepare yourselves for my Bitmoji to regularly appear in posts.

Here are the things I've been trying to prioritise in my life this year and will continue to over the next few years: 

Finish organising craft supplies and decorate my craft corner

Why I want to achieve this goal:
I want to get back to making beautiful things and enjoy a fun, functional (and pretty!) workspace. I want to work on craft projects knowing where all my supplies are.

What is holding me back? What obstacles am I facing?
Fatigue, pain, overwhelm and lack of storage space. Going from having a whole craft room to a small corner in an apartment bedroom is way more challenging than I thought it would be. Also, lack of finances has been a hindrance in getting the storage items I want to make the space look amazing.

How am I going to accomplish this goal?
Sort through things in 15-minute blocks on good days and focus on one section at a time to minimise feeling overwhelmed.Temporarily store supplies and tools in labelled packing boxes until I can make my craft area a financial priority. Find new ways to store things and pack away things that aren't frequently used and store them in our car park storage cage.

My reward:
I'd love to have a crafternoon with friends but due to CFS and its impact on my brain I'm unable to talk with/entertain friends and craft at the same time. It sucks but I'll just treat myself to some craft things from my wish-list instead. New craft supplies are great motivation! 

Finish current read  

Why I want to achieve this goal:
I've been trying to get through 'The Oath' by Frank Peretti for many years and I want to finish what I started and move onto other reads I have received.

What is holding me back? What obstacles am I facing?
Mental fatigue and brain fog make reading regularly challenging and impossible at times. Pre-illness I found reading enjoyable and relaxing and now it's stressful and feels like a chore. Sometimes reading is too frustrating and I have to put my book down for long periods of time. Because of these challenges, I struggle to find the motivation to read.

How am I going to accomplish this goal?
Make reading more pleasurable. I enjoy my morning turmeric lattes, so it makes sense to work my way through a paragraph or two (when possible) while sipping away.

My reward:
I'd say buy a new book but I already have more than enough to get through, so I shall have a movie night with my favourite snacks.

Stop being bothered by what others think of me

Why I want to achieve this goal:
Some awful experiences I had at a church I previously attended have been holding me back from the life I want to live for far too long.

When I was at one of the lowest points with my health, and suffering from depression as a result, I gathered up the courage to ask someone from church for some support. I was feeling isolated and just wanted a friend to have coffee with, so I went to reach out to someone on Facebook who I thought was my friend and someone I could trust and confide in, to find they had deleted me. It made me feel a million times more alone, and it devastated me. I thought they were my friend, and I felt so ashamed and stupid I got it so wrong. To have that happen when I was in the thick of depression and a health crisis was soul-crushing. That was the last time I tried asking for help in that church. I shut down, lost all of my confidence, and hid away.

Not long after that incident a bunch of people from that church also deleted me from Facebook around the same time. I noticed this because I have a pretty small friend list (it's obvious who's missing from my feed) and a few people who I was friends with popped up as mutual friends. Now I don't have a problem with people not wanting to be friends with me on Facebook anymore, heck, I delete people too. But what hurts is when those people choose to stay friends with all of your family members. Yeah, that stings. It feels much more personal and you know they probably have a problem with you and don't like you very much. Stab in the heart. Ouch.

Distraught, I blubbered to my mum through tears: ''How can I keep going to a church where nobody likes me? How can I keep going to a church that doesn't care I'm sick? What did I do wrong? I want to know if I've done anything wrong so I can fix it.''

The answer was I didn't do anything wrong; they let me down when I needed help, support and love the most. And I couldn't continue going to a church that treated me like I was worthless and persisted in noninclusive behaviour.

I didn't leave that church because a group of people were insensitive on Facebook, many other happenings wounded me, but it was the straw that broke the camel's back.

My negative expeiences with people in that congregation impacted my life in many ways. The harsh reality that I was alone in that church and that no one cared I was going through hell broke me for many years. It made my depression and anxiety worse and shattered my confidence. I'm now filled with self-doubt, I overthink and overanalyze conversations I have with new people I meet, and I worry the support that I desire now and then just makes me a burden to people. Even after six years since leaving that church I'm still trying to heal.

My social life has suffered for far too long, so I want to worry less about other people's thoughts and judgements of me. Worrying about what others think is debilitating. I want to gain self-respect and mental freedom, and I want to stop hiding from social situations out of fear people won't like me.

Made with Canva

What is holding me back? What obstacles am I facing?
Negative experiences that have scarred me. Having social anxiety also doesn't help because it makes me feel that people are negatively critiquing me.

How am I going to accomplish this goal?
Find a new church that's a better fit for me. Ask for prayer. Remind myself of who I am in Christ and remember that it doesn't matter if a group of people don't like me because eventually I'll find one that does. I can't be perfect and I can't be everyone's cup of tea, and that's okay.

My reward: 
Buy a nice journal to record reflections and progress. 

Source: Pinterest

Find a new church and attend as much as possible

Why I want to achieve this goal:
To reduce feeling isolated, heal from past negative church experiences and build my confidence back up. I want to see God move in my life, make great friends and be a blessing to others. I want to surround myself with people who support my dreams and will encouarge me to grow.

What is holding me back? What obstacles am I facing?
Fatigue, brain fog, social anxiety. It's frustrating that I'm not yet well enough to go every week, but if I can aim to go every 2-3 weeks, I'll be happy with that. That's a huge improvement on not going to church at all.

My reward: 
Coffee dates with new friends.

Get another opinion on my painful feet 

Why I want to achieve this goal:
A few years ago my feet started hurting more than they should. They looked twice their size, and it became painful to walk or stand for periods longer than 10 minutes. I gave hard orthotics a physiotherapist recommended a try, but I couldn't walk in them; it was too painful with fibromyalgia. Then after a podiatrist told me that soft orthotics were the only way to go at the expense of $600, I gave up searching for pain relief. I don't have $600 to risk on custom orthotics that may not work or could flare up my fibromyalgia pain!

Hoping the pain would go away I've been ignoring the problem, but whatever is wrong with my feet is now impacting on my shins and knees, so I need to get another opinion. I'd like to find a podiatrist who understands my financial situation and will find other options that might be more fibromyalgia friendly. The goal is to make walking and standing more comfortable, and receive help choosing more supportive footwear.

What is holding me back? What obstacles am I facing?
Conflicting opinions from healthcare professionals. A physiotherapist was convinced that aside from having flat feet, rheumatoid arthritis is causing most of the pain. My rheumatologist disagreed with their opinion and referred me to a podiatrist who told me the same thing the physiotherapist did! (Apparently my feet are deformed from arthritis.) Who the heck do I believe? This is all so frustrating that I can't be bothered with this problem anymore; I have much more troublesome symptoms to manage, so my feet come low on my priority list.

How am I going to accomplish this goal?
Find a podiatrist who understands my financial situation and is willing to find other ways to improve pain. If podiatry doesn't help, demand to have scans done. I don't think arthritis is my problem, but I question if flat feet explains everything.

My reward:
Buy some new supportive shoes (following podiatrist's recommendation) with a gift card I received for my birthday.

Watch less TV 

Why I want to achieve this goal:
I've been watching Home & Away religiously for well over a decade. It's a 30 minute (sometimes 90 minute) commitment four nights a week. Last year the show became boring for me but I kept on watching, out of habit. I want to ditch it from my life and save my mental energy for the more fulfilling and rewarding things that bring me joy.

What is holding me back? What obstacles am I facing?
The temptation to sloth on the couch all evening. Sometimes I don't feel like doing anything other than plonking myself in front of the tv.

How am I going to accomplish this goal?
Make the couch off limits at 7 pm unless it's a terrible day and I can't manage anything else.

My reward:
Time to spend crafting.

Strewth I'll miss Alf Stewart though.

Keep trying to get endometriosis pain under control

Why I want to achieve this goal:
I want to know why endometriosis is now giving me terrible arm, shoulder and leg pain, amongst other wacky symptoms. I want to improve this pain so I can stop living in fear of my menstrual cycles.

What is holding me back? What obstacles am I facing?
Wanting to give up because I'm just damn tired of it all. Needing to see healthcare professionals regularly for the pain and having to explain everything over and over is exhausting. I'd like a break. Also, treatment is freaking expensive.

How am I going to accomplish this goal?
Find a better gynaecologist, try pelvic floor physiotherapy and consult a pelvic pain specialist.

My reward:
After every endometriosis related appointment, have something nice for lunch.

 Get finances in order

Why I want to achieve this goal:  
To feel in control again. Medical bills and groceries are killing my budget (I swear the price of fruit and vegetables has skyrocketed in the last two years) and I want to see if I can make cutbacks somewhere to generate savings. I also want to look at investing more into craft, to help me build up my portfolio and make tracks starting a business one day.

What is holding me back? What obstacles am I facing?
Sitting down and doing a budget isn't a fun way to spend precious energy.

How am I going to accomplish this goal?
I'd like to get a copy of Scott Pape's 'The Barefoot Investor: The Only Money Guide You'll Ever Need' and put his advice into practice. It will be interesting to see how it works with so many medical expenses.

My reward:
My new favourite treat, a jam croissant.

Get back into yoga 

Why I want to accomplish this goal:
I had to stop exercising when I moved out of home to allow my body to recover from the move. I miss the sense of accomplishment a 5-30 minute yoga workout gave me and I'd now like to get back into it, even if it's just for a few minutes a week. Improving my balance would be awesome too.

What is holding me back? What obstacles am I facing?
Not always having the energy for both daily activities and exercise is a big issue. Things like cleaning, cooking and grocery shopping feel like running a marathon to my sick body. Adding exercise into that mix is like trying to swim in winter clothing.

How am I going to accomplish this goal?
Try to set aside 2-3 days a week to focus on one yoga pose. Create a better morning routine and stick to it when possible.

My reward:
For every 15 days of exercise enjoy Nutella doughnuts. The irony of this reward is not lost on me! But hey, if it gives me the motivation to get back into a little exercise then so be it. #willdodownwardfacingdogfordonuts #girlsgottadowhatagirlsgonnado

I want to feel like a unicorn again. Image credit: YogiApproved

Get back to making beautiful things

Why I want to achieve this goal:
Now I'm starting to get my workspace and craft supplies more organised I want to get back to doing what makes my soul happy and make things that bring joy to others. I want to get better at craft, learn new techniques, experiment, and build up my portfolio in the hopes of becoming an Etsy seller. I feel like selling a few handmade gifts now and then is a nice little goal to work towards which will give me a sense of purpose.

What is holding me back? What obstacles am I facing?
Fear and lack of confidence. Because I haven't been able to craft on a semiregular basis, I feel like I've forgotten how to craft and I kind of feel lost. I'm not a confident person and I doubt if what I make is good enough to sell, even though people keep telling me it is. I'm also terrified of selling to someone to hear I've disappointed them.

How am I going to accomplish this goal?
Create a space I want to craft in. Dedicate time each week to keep my workspace and supplies organised. Have a look at Pinterest and YouTube for inspiration. Invest in tools and supplies that excite me. Try to ration my energy better so I have more times when I do feel like crafting. Aim to work on 1-2 projects a month.

My reward:
Buy a craft magazine occasionally and visit craft markets.

Write with wild abandon 

Why I want to achieve this goal:
I've been holding back with my writing.There are topics and things I've been through that I haven't written about for fear of oversharing and offending people. If I keep living in this fear and keep writing to please, I'm never going to take this blog to the next level. I need to take risks with my writing because I want this blog to be a solid stepping stone for writing and publishing a book.

What is holding me back? What obstacles am I facing?
Fear of judgement, feeling like I'm a terrible writer, and anxiety. I wake up in the night with panic attacks whenever I post something that's deeply personal. Mental fatigue is also a hinderance, it makes writing challening and often impossible.

How am I going to accomplish this goal?
Focus on writing about issues I'm passionate about instead of worrying about what people want to read. Remember that if a post helps one person feel less alone, then it is worth being vulnerable.

My reward:
Tea with my favourite biscuits. (They are the Woolworths Free From Gluten Scotch Finger Biscuits if you're curious. I'm addicted! However I should point out they are also free from dairy and eggs, so won't be to everyone's taste.)

Become a pen pal

Why I want to achieve this goal:
To get back to sending snail mail again, gain a sense of purpose, and be a blessing and encouragement to someone.

What is holding me back? What obstacles am I facing?
Low energy and brain fog.

How am I going to accomplish this goal?
Consider joining a pen pal group on Facebook. There is an endometriosis one that looks cool, though I will have to be very careful.

My reward:
New pens, paper or Ephemera.

Get back into adult colouring

Why I want to achieve this goal:
For mindfulness and relaxation. I also want to improve my colouring of stamped images for cardmaking.

What is holding me back? What obstacles am I facing?
Being a novice. The crazy skill level on Instagram is intimidating and makes me feel like I shouldn't even bother because I'll never be that good.

How am I going to accomplish this goal?
Remind myself that it's all about relaxation and having fun. Most good colourists are professional artists, which I am not, so I shouldn't be comparing my efforts to theirs.

My reward:
Enjoy tea with a slice of cake after completing a page. 

My first attempt at adult colouring.

FYI: It has taken me many years to get to the place where I am today. If you're not in a place to set goals just yet, that's okay. Just because you're focusing on surviving and doing the best you can for your health doesn't make you any less of a rock star, so please don't compare yourself to me. You are still worthy and important without goals and achievements.

Also, this is not a sponsered post. I genuinely like the structure of the Kikki.K Goals Journal and recommend it.

 I hope to be back next year with the goal of attempting small monthly goals.

You can follow my goals progress and daily achievements on my socials- Instagram, Facebook and Snapchat (emily-creative).

Friday, March 16, 2018

Picking up My Pen Again

I wouldn't blame you for thinking I dropped off the face of the earth. I didn't expect to need over a two-year hiatus from writing and blogging. On my social media accounts I haven't been as active as I try to be either, but I am still here, and I am not giving up on this blog and social mediaing. Boy, have I felt like it though.
Life has been incredibly difficult lately. I've been busy... well, being sick. With every passing year, despite my best efforts, I've been getting sicker and sicker. With declining health, just surviving daily life and getting menial chores done feels like I'm trying to climb bloody Mount Everest with bricks tied to my ankles. As a result, I've had to put the many things I love doing on the back burner, and unfortunately blogging had to be one of them.
While taking a (forced) break from blogging I've been occupied with trying to get my health back on track. I've been seeking help from an integrative practitioner and trying alternative treatments which I haven't had access to in mainstream medicine. (I posted briefly about it on Instagram if you're interested.)
Searching for answers and a reason for my worsening pain and fatigue has been far more gruelling, both physically and emotionally, than I expected. Though I'm happy to report that my efforts have not been futile, and I have made progress. Itsy-bitsy progress, but progress nonetheless. I have a lot to write about my experience with alternative treatments which I'm looking forward to sharing another time.

Along with focussing on my health I've also been hardcore adulting. In mid 2016 I decided it was time for me to achieve a life goal and become a more functional adult. So I moved out of my parents' house and started renting a nice place with my sister. Things were going well until just three months into our twelve month lease the real estate asked us to consider moving out due to our landlord facing hardship. I say "asked" but we were bullied into deciding to move again.

We didn't really want to leave as we were just getting settled. But we were thrown into an uncomfortable and difficult situation where we felt threatened, so we thought it best to move the heck on out. We made the most of a crappy situation and moved to a better, albeit smaller place, with cheaper rent and everything we need within walking distance.

But on the downside, my health took a hard hit. Moving house twice in three months is challenging at the best of times, but when you're trying to manage a chronic illness (in my case several), it's an absolute nightmare. Every area of my life suffered for it. For the following two months after the move I lived off store bought frozen meals as I was too unwell to cook. I couldn't manage to stay present on social media. I couldn't do much writing or much of anything really. For six months I rarely left our apartment or saw friends.

While I don't regret moving twice in such a short space of time, the spike in symptoms and lengthy recovery process has been extremely difficult. It has sucked, big time. It has taken the better part of a year for me to partially recover, and even now I'm still struggling to get my home life together and organise things the way I'd like.

On the upside, I absolutely love where I am living now. And the independence, freedom and personal growth that moving out of home has yielded me has been worth the suffering. I think. Although some days I really do question that!

In addition to being physically unwell I've also been struggling with depression and a serious lack of motivation. This monster has been my constant unwanted companion for a few years now. It's a big contributing factor to why blogging has been so difficult.

When you're constantly fatigued and in pain, depression just comes with the territory. While I'm definitely used to experiencing bouts of depression from time to time, this is the longest period of time that I've been plagued by despair, sadness, anxiety, panic, lostness, and uneasiness. I've pretty much lost interest in everything and I haven't felt like myself for a very long time. Some days are just okay, other days are pretty uncool.

A positive though, I guess, is that I know exactly what triggered it. A few years ago I was put on a medication for nerve pain. After about six months of taking it I started to suspect that it wasn't entirely agreeing with me. After researching and conversing with my doctors I concluded that it was the cause of my misery. I attempted to get off it several times but it was the only pain relief option that managed my pain well enough. So I had to decide whether I'd rather live with excruciating facial pain, a constant headache and frequent migraines, or to continue living with depression and everything that entailed.

I chose to put up with depression, inevitably succumbing to a downward spiral into the abyss. At the end of 2016 I reached breaking point. (I'm surprised I didn't reach it sooner.) The depression got too much and I just couldn't do it anymore. Spending three years feeling as flat as a tack finally did a number on me. I was a mess. An absolute mess. I could no longer continue risking my mental health for the sake of pain relief. My neurologist agreed. Thankfully this time I was able to successfully switch over to a new drug, and while the depression improved, unfortunately I haven't yet recovered like I expected to.

Depression has definitely extinguished a lot of my desire to write and blog. It has also made me afraid to blog as I don't want to be viewed differently; I don't want to be seen as a Debbie Downer when that's far from who I truly am. I don't want to drag everyone else down into the deepest darkness with me. But by the same token the whole reason I started blogging was to share both the dark and bright days. To be real, authentic and honest. To remind others that they aren't alone when they can't look on the bright side.

Truth is chronic illness is a treacherous, turbulent, cumbersome and painful journey. Often the days are dark. Dreary. Ugly. Wearisome. Hard. I need to be honest about that. I'm not where I want to be right now, and that's okay. Life is not sprawling blue skies at the moment and it's perfectly fine to write about it.

I desperately want to overcome this darkness, lack of motivation and loss of interest. I want to get my zest for life back. I want to get my wild determination back.

So it's time.

It's time to pick up my pen and write again. It's time to grab those small pockets of time when I do feel like putting pen to paper, fingers to keyboard, and write like the wind.

It's time.

It's time to keep writing anyway, no matter how dark it gets. It's time to be open again. It's time to be brave again. It's time to rediscover my passion and pursue it, fiercely. It's time to get my inner fire back. It's time to rise to my feet, pick up my sword and shout to the darkness "You will not defeat me".

It's time.

Quote via BuzzFeed 


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