Tag: improvement

To smell the flowers

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It’s been a funny few months. I say ‘funny’, but I don’t mean ‘haha’ funny. More like a peculiar, confusing funny. The ‘I’ll laugh otherwise I’d cry’ kind of funny, although I’ve still admittedly shed quite the volume of tears over the past few months (though some that know me would say this isn’t necessarily unusual for me). The point is, I’ve run the gamut of emotions in a condensed amount of time, and it’s left me feeling really weird lately. An emotion I can’t quite pinpoint. How annoying. 

It’s been understandably difficult dealing with my husband’s evolving medical issues, though I can say after more than 6 years of relentless, terrifying situations, I genuinely feel like we face these issues with much more pragmatic attitudes than ever before. It never stops being terrifying and emotional, but I’m immensely proud of the way we’ve faced recent events and pushed ahead with logic. Though we’d give anything (literally anything!) not to have to deal with this crap, in a twisted way, I’m grateful that we, as individuals and as a pair, have become better versions of ourselves off the back of what we’ve experienced. Just the fact that I can type this now shows that I’ve grown a lot as a person – that I can take a step back from the chaos and analyse it logically. And better yet, that I can admit that there’s any glimmer of a silver lining in the shitty cards we’ve been dealt in life shows how far I’ve come. Every cloud, eh?

As a quick update for those following this insane medical journey: we’ve found a private neurologist in the last few months who my husband describes as ‘the best doctor’ he’s ever had. And considering his medical history, you can be damn sure he’s seen plenty, so this judgment points to good things. The doctor treats us like human beings (gasp!), has a sensible approach to health backed by science (not always a guarantee these days) and genuinely seems to want to help. This is the first time we’ve not felt like lepers in a doctor’s office. It’s still early days in my husband’s current treatment, but we’ve got a course of action… and then several other courses of action planned should the first one not pan out. So in short: we’re happy and optimistic – something we weren’t feeling at the start of the year. Fingers crossed the trajectory continues this way.

Whilst all this was going on in the background, as is usual fashion for me, a tornado was wreaking havoc in other parts of my life too. I’m still waiting for the reality TV crew to jump out from their hiding spots, but until then…

The company I work for went through some major internal structural changes recently that left my entire team facing redundancy. It happened very quickly – we were told our roles were being made redundant, proposed new positions were explained, those who wanted to stay had to interview for these very few new open roles, then we were told if we were successful or if we were out the door. All within 30 days. As you can imagine, this was incredibly stressful and emotional. I went through every stage of grief, no lie, and I for sure had severe moments of ‘why now, why me?!’. Nevertheless, I pushed through the best I could, and I attribute that both to the strength I’ve found in past life experiences, as well as to the people who helped prop me up and cheer me on throughout the process. Though I’m grateful I landed a new role at the company I love so much, I’m simultaneously grieving the loss of many fabulous colleagues and friends. It’s a complicated time, gang.

I went on a much-needed holiday, then came home and immediately fell very ill for a very long time. I faced conflicts with people I love. I made distant future plans knowing life could change by then. I went to the doctor for myself – twice! I’ve been let down. I’ve been surprised. I’ve been socially awkward and shockingly social.

These last few months have forced me to think about my own wants and needs much more critically, and to make very hard decisions quickly. I’m not a fan of making quick decisions on a normal day, so it’s been particularly difficult of late. I’ve had way too many anxiety attacks to count, but whilst they’ve been frequent, they’ve been brief. I’m slowly learning how to regularly claw my way out of these moments (with obvious external help from those around during an episode – thank you!), and so I say again: every cloud.

I’ve made regular use of the ‘block’, ‘unfriend’ and ‘hide’ functions on social media platforms, protecting myself from toxic people who trigger me. I thought this would be hard to do – I don’t like the aggressive feeling of doing this – but I can honestly say that it’s helped me so much more than I could’ve expected. I’ve also made use of the word ‘no’. Little miss ‘too-afraid-to-disappoint-people’ and ‘gives-everyone-10-billion-second-chances’ has given firm nos to negative influences who’ve tried to reach out. Who am I?! I won’t say this was easy to do in the moment, but after doing it once and realising I was better off for it, I find myself becoming much more comfortable looking after myself and not feeling guilty for doing it. Guess this is growing up, ya’ll!

I don’t think I’m feeling optimistic or particularly positive, but the main thing is that I’m trying to. It’s taken me many, many years, but I now feel like it’s okay to put myself first. This doesn’t mean that I care less about anyone else, but rather I care so much that I want to ensure I’m putting the best version of myself forward first. Not the tired, broken down version I previously offered. I’m not saying I’m killing the game over here – I still have bad days where I just can’t get a grip on my anxiety and collapse into a ball of erratic, irrational emotions. But I can say I don’t feel like a failure on these days anymore. I am allowed to feel broken. I am allowed to be angry and resentful about the cards I’ve been dealt. I’m allowed to have ‘woe is me’ days. But above all this, I know I’m allowed to be happy and continue to seek happiness. I’m allowed to change my mind and my mood. I’m allowed to be! It’s crazy that I’m only just now coming to this realisation, but I’m very glad I did.

And now, I think I’ll take some time to stop and smell the flowers. It’s a crazy life, folks. But there’s always a little beauty to see. You just gotta know where to look for it.

What hurts

Pain: The physical feeling caused by disease, injury or something that hurts the body.

We have all experienced pain in some form or another in our lifetimes. If the world is kind, we hope that it is only a temporary and brief experience. And even if we don’t get a say in how long the pain lasts, at least we get to cling to the hope that it will eventually lapse so that we can then switch gears to healing instead of hurting. But what happens when the pain not only has no end date, but also has an imminent promise of getting worse? Then what?

I mentioned last year the medical issues that were overwhelming my husband and me (yep, we got married!). We didn’t have concrete answers in regards to his nerve condition back then, so we were still able to see a glimmer of hope for improvement. The possibility of pain relief was still at least obtainable in our hopeful minds because questions weren’t yet answered. Unfortunately and fortunately (it’s a mixed-bag of emotions, here), we now have that definitive diagnosis of Complex Regional Pain Syndrome. After yet another foot surgery in an attempt to improve his walking situation, James came out of it with seemingly more chronic, daily pain. So here’s what we’ve learned in the last few months that we didn’t know or weren’t told before:

1.) CRPS is not only incurable, but has a 90% chance of worsening and spreading to other parts of the body after time.
2.) There is no medicine on the market as of yet that successfully manages CRPS pain or guarantees any long-term relief. The medicines that doctors typically go for are prescribed on a strictly trial-and-error basis. Some possible treatments can also be super risky.
3.) Forcing yourself to push through the pain is the only way to try and mitigate or slow down the risks of the condition spreading (they think), but the minute you allow yourself to rest is when the pain can get its most excruciating.
4.) Doctors won’t let you just cut your foot off and call it a day if the idea of living your life in constant pain doesn’t appeal to you.
5.) The experts and specialists don’t really have good answers for you because they don’t understand it either.
6.) BUT James doesn’t NEED to use crutches or a foot cast anymore… if he can stand the pain.

So now what? My husband has an invisible disease that nobody fully understands and it has not only become the focal topic of our lives, but it also determines the majority of our actions and choices. We don’t realize how important and integral walking and standing are until the act of doing either incurs unbearable pain. Or participating in a conversation and suddenly being wracked with disorienting and distracting pain, unable to pay enough attention to really “be” where you are. I would never wish this condition on my worst enemy, yet I have to sit idly by watching the person I love the most living with it. That’s a type of pain I never expected I’d have to live with for myself either. For the rest of our lives.

I love my husband. I fully recognize that this awful situation is not something he brought on himself, and I have never and will never blame him for it. But it is certainly something I never could’ve prepared for, mentally or emotionally. I have moments of agonizing helplessness and guilt when I find that I have no offers of advice or suggestions to give James in order to alleviate the pain. I often find myself at a loss for words simply because I know nothing I say can stop him from hurting. That is a type of emotional pain I didn’t even know existed. There are so many different facets of pain, and I’m uncovering a whole slew of them lately. Whether we’re together or apart,  I’m constantly worried about his comfort level, wanting to protect him from any possible dangers that could increase his pain, but also trying to take care of myself as well. I morphed into caretaker mode because nobody wants to watch their loved ones suffer – we want to help. But I found that as I desperately tried to find ways to help, usually without success, I was letting the worry consume me so much that I stopped caring about my own well being. Even still, I struggle to find a balance between looking after my husband and looking after myself. I wonder, is this how first-time mothers feel as well – scared and unsure? Although, at least they can learn how to fix and/or improve things to encourage better quality of life for their children, right? Or they can ask professionals who can help too. I feel like this situation is so unique that there isn’t any one thing or person I can turn to for help, and it’s not something that sits well with me. Especially with the thought of the pain spreading. What happens if the pain becomes so intense down the road that he can no longer move, work, live a joyful life? How do I deal with that then? Then I remember that speculating what could happen later doesn’t help the now, so I try and drop it. But as with most things, that’s easier said than done.

I have gained a whole new respect and admiration for individuals with disabilities (seen or unseen). For those of you fighting off illnesses, caring for loved ones who are unable to care for themselves, living with pain – I salute you. You are far stronger people than I am, and I aspire to achieve the same strength. You don’t receive enough credit for the effort you put into creating and living a good life despite any real or imagined shortcomings you’ve been dealt. You face obstacles not with fear or defeat, but with determination. We are only given one life in this wicked world, so no matter what, we have to learn how to love it. Even if it hurts.

I’m learning as I go, and despite the agony we both feel sometimes, I’m so happy James and I have each other for support. And I will do whatever I can to help raise awareness and fund research projects so that debilitating, inhibiting, invisible medical conditions like CRPS can be eradicated. I can’t do everything.. but I can do something.

That’s the thing about pain. It demands to be felt.

Correcting tunnel vision

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Perhaps this is going to sound hypocritical, but not many people can do what I’ve done and be humble about it. I’ve worked my butt off for so very long to achieve what I have, and I’m satisfied. This feeling, right now, is exactly what I hoped I would feel.

– June 1, 2013

It’s easier than you think to lose sight of the important things in life. When I graduated college, I wrote a blog detailing how I felt about my life leading up to that day and what I hoped would be in my future and posted it on Facebook. Only four people liked it and two bothered to comment, but I was still glad I wrote it because it was true to how I felt and I knew I wouldn’t want to forget that feeling. Seven months later, I forgot that feeling until I went to the movies tonight and saw The Secret Life of Walter Mitty. I walked out of that theater feeling completely jazzed about life, about possibilities and about truly making the most of the days I have left on this earth. It forced me to take a hard look at how I’ve been thinking these last few months and how I need to get back on track.

The job market hasn’t been kind to me lately. I’ve made this blatantly obvious, but I’ve also been kicking up a lot of dirt just because I thought it would make me feel better. Although it may help a little, it hasn’t changed my situation.. so I know that means I need to change my attitude. I don’t have the full time job in my field that I wanted right now, but I do have a job. That’s more than some people, and I should really quit griping about it. See? A positive from a negative. The societal pressure to go to college and get a job in your degree of study immediately upon graduation is incredibly intense and, in my opinion, a very skillfully created brainwashing technique to churn out a workforce rapidly. I think college was a good choice for me because I truly enjoy learning, but I know plenty of people who didn’t go to college and are sitting much prettier than I am at the moment! The point is, a lot of us allow this grand plan to get in the way of our own desires and I think that’s why we stray and stress so much. Yes, I want a job, but not at the expense of my psyche, my health or my happiness. I can still be proud of who I am and what I’ve done instead of sulkily skimming through online job applications and shamefully hiding away from inquiring minds. I have not fallen from grace because I don’t have a full time job in communications. Furthermore, I (and so many others) need to stop beating ourselves up for not knowing exactly what we want to do in life. It’s okay not to have a steadfast plan, and feeling uncomfortable means you’re growing.

…But I simply can’t predict how I will feel once I step outside this comfort zone, so the only thing I can do is just.. leap. It’s not a plan and that’s scary, but it’s also liberating.

Confucius said, “it does not matter how slowly you go so long as you do not stop.” I’ve never considered myself to be foolish and certainly not a quitter. My end goal is still to find a job I can enjoy more than the one I’m working at now, but I think I need to stop making myself feel guilty because I’m not where I thought I would be. There are plenty of other things that happened in the last year that I didn’t plan for, but they’ve gloriously changed my life for the better. Yes, I still feel like I need help finding the job that’s right for me, but I need to quit obsessing over it. I’ve had a lot of opportunities fall into my lap at a very young age, and this is the first time I’ve had to work so hard to achieve a goal. But you know what? Perseverance is good for us! So while it’s important to remember what it is exactly that we’re looking for and what we want out of life in the grand scheme of things, it’s also important to live in the now and appreciate the little things. For example, I can move anywhere in the world because I have nothing tying me here, I can spend days in a row with friends or family members because I’m fortunate enough to have time off frequently and I can stick to what I want… or change my mind whenever I feel like it! So what do YOU want?

I want to keep learning. Not from books or computers, but from life, people and through experiences. I want excitement and freedom and to always find joy in the simple things. And most importantly, I want to continue to enjoy what I do no matter how long I’m doing it for.

Maybe these aren’t the best conditions or requirements for a specific job. In fact, they’re incredibly broad and vague and I doubt any employer would snatch me up if I said these were the things I was looking for in a job. 14-year-old Tanya would be so disappointed in me now for changing the plan. But the truth is, having a plan may be responsible.. but straying from the plan and going after what will make you feel best is the most fulfilling. I don’t want to follow the rules or the expectations that others have set for me because that’s not what will make my life fulfilling. So although I don’t yet have that “perfect” job I hoped I would be working by now, I know I’m going to get there. And when I do, it won’t even feel like work.

So until then, I’m going to follow my heart and continue to learn from experience. And even though I’m still scared out of my wits and worried about where this will all take me, I’m confident that I’m going where I need to go and those who matter will be with me and support me throughout the journey.

This moment is the best moment. You can go anywhere, be anything and do anything you want. The choices are daunting and sometimes worrisome, but there’s one beautiful loophole: if you don’t like where your path has taken you, you can choose a different route just as easily.