Tag: understanding

We all march on…

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I’m just going to slide into this blog post acting as if it’s only been a blip in time since I’ve last posted. It’s okay to start this one out on a lie, yeah? Great, glad we’re in agreement there. Moving swiftly along…

Hi buds! Can you believe it’s 2019 already? I can’t! OK, great. Chit chat – done!

Life sucks. Pardon the melodrama here, but honestly it’s become such a drag lately I genuinely feel like all I ever do is whine and complain and I hate it. I’ve wanted to write about it for so long, but I felt like if I did, I’m just painting myself as this world-class complainer who can never see the good side in life. I don’t want to be that person in the slightest, so instead, I just shut up. But that doesn’t help me emotionally, and it certainly doesn’t help anyone else who cares about me and wants to help. So despite still having reservations about writing this post, here I am. Doing it anyway! *insert awkward grimacing face here*

The last you heard from me, I was talking about my husband’s vitamin deficiency. Plot twist! Turns out, that was never the problem. Also turns out, nobody knows what is the problem. Sound familiar? We’ve done this song and dance so many times, it’s almost weirdly expected now. We’ve been in and out of the hospital the last six months – the emergency department a few times – test after test, waiting for someone to find a lead and bring us closer to an answer to the problem. I’ve been having flashbacks to the time we had to do all this before his CRPS diagnosis, and it is honestly heart-wrenching (and unbearable) remembering it took years of suffering before a doctor diagnosed him. Can I handle that again? Can he? And even now, not all doctors agree that he does, in fact, have CRPS. Every doctor seems to have a differing opinion, but I guess that’s just the nature of a syndrome, eh? In any case, this was never a place I expected us to be back in… ever, let alone this soon after having just rode this crazy train to CRPS land. I want off the damn train.

Every day at work, someone asks me how I’m doing. It’s a natural, casual question, not intended to be loaded in any way. For the last six months, my answer has literally been the same no matter who asks: I’m tired. I keep joking that exhaustion is now just a part of my overall personality, but in my head I do kind of feel like it has overcome me as a person and I’m incapable of being or acting any other way. It’s exhausting being this exhausted! I find myself digging back through my photo archives, reminiscing about years before, wishing I hadn’t taken such a carefree life for granted now that I’ve learned how overwhelming it’d all become. Then the guilt strikes, hard, in waves, and I’m chastising myself for being so negative. My thought patterns are wildly unpredictable, and I can’t even keep up with myself most days. So, I keep it simple when people ask. I’m just tired, and leave it at that.

I’ve mentioned before that I often approach a new year by reflecting on the one that’s just gone, to shed myself of those feelings to begin anew each year. Most of 2018 wasn’t all too bad. Health-wise, my husband wasn’t great the majority of the year, but it had become our new normal and we were just living with it. I felt lonely and isolated a lot, but lacked the motivation to do anything about it. But toward the end of the year, the feelings of pride I had for handling the difficult life the universe crafted for me with grace were quickly replaced with intense fear, uncertainty and crippling anxiety. As his health degraded and new symptoms were emerging, we were absolutely gripped by what was happening. I more or less blacked out from September onward, unable to think of much else apart from his health and what I could or should do to help fix it. Every moment of my time was spent worrying about him, whether he was around me or not. Not only did the new symptoms present more problems going about our ‘normal’ lives, but they seemingly made previous, regular symptoms worse.

But when Christmas finally rolled around, he was starting to feel a little better, and since medical tests hadn’t found anything still, we thought maybe we were in the clear. A fluke, surely. He got back to feeling more positive, laced up his running shoes and stared his pain condition directly in its non-existent face; running each weekend brought him pain, but also joy. The thing that he loved most before the nerve condition turned up uninvited. He was doing it again (!!), slowly and very carefully, but I could see his pure joy and god, how fulfilling that is to witness. Short lived, of course. Isn’t it always?

A few months later, the symptoms were back: extreme dizziness, blurry and/or double vision, intensified pain, localised unintentional muscle contractions, insomnia. A change in diet had improved his gastro symptoms, but nothing else. Blood tests still revealed no abnormalities. I think I took it hardest at first. I felt foolish and naive – how dare I think the issue resolved itself overnight? Haven’t I learned anything in this journey so far? How could I let him down by not being the pragmatic one? I was livid. At myself, at this mystery illness, at the universe. Why couldn’t I help him? It all feels so unfair and I can’t understand why we don’t deserve a break. It’s hard. Every day I’m fighting my own emotions, it’s no wonder I’m this exhausted.

My resolution this year was to be more sociable and make more friends. One thing that makes dealing with my life so difficult lately is that I genuinely do not have friends to help me escape – my mind, the situation, my life (sometimes). Especially in my new country. I don’t mean that to be cruel or dramatic or insensitive to the people who are in my life, but to be completely honest, I do not have anyone who regularly checks in on me without me having to prompt it first. Maybe this is my fault. I can be very closed off and I’ve often backed out of plans with others (because, this life), so I can totally see how I’ve made myself unapproachable in general. Nevertheless, it is hard seeing my husband’s phone light up with messages from friends and colleagues simply checking in, asking if he wants to grab a drink, shoot the breeze – all because they want to. He’s got friends fairly regularly asking him to do things and he’s the one with the disability, but I’ve often been sat at home alone waiting for him to return (and worrying if he’s okay). Don’t get me wrong, I’m thrilled my husband has people in his life like this. It relieves some of the burden and guilt I feel when I think I’m not being or doing enough for him. But still, I’m jealous. I wish I had people who wanted to take my mind off the things troubling me most! And boy, is it hard to make friends as an adult. In any case, I decided I didn’t like feeling so lonely and pathetic, so that’s why I endeavoured to put myself out there more often – social anxiety be damned!

It’s slow going, I’ll admit. I’m still resentful that I’ve seemingly been unable to pick people to stay in my life of their own volition. I can’t help but feel like there must be something wrong with me for people to forget about me so easily or treat me unkindly. I still struggle to shake this ‘woe is me’ feeling I have so often. But! I’ve started to make new friends. People who have so far been kind enough to reach out on their own accord and invite me to do things, ask me how things are, assure me they’re there to talk or not talk – whatever I want or need at any time. I am apprehensive, at best. I want to trust that opening up to new people will bring in new friendships I crave, but I’m also afraid I’ll lose them just as quickly. My life is so unique to the average 20-something, and I’m hyper aware that none of these people may understand the life of a caregiver. Because that’s what I am, really. But I am still trying and being more social and slowly opening up to new people. It is likely I’ll get hurt. I know this – such is life. But if there’s even a small chance that one of these wonderful new people in my life will stick around, then it makes it all worth it. We need people. And I need people to help remind me that I’m still young and have a whole, exciting life ahead of me. To remind me that I am more than this situation. That my personality isn’t ‘tired’. That I’m someone who needs care and attention too, sometimes. I very often forget this down in the muck that is this medical nightmare. So to those of you reading this who’ve been so kind and understanding toward me – even without knowing my whole story yet – I thank you. You have no idea how huge of an impact you’ve already had on my life, and moreover, I hope you stay.

This isn’t an easy life. I’ve never foolishly believed it would be, but I never could’ve guessed I would experience such trauma in such a short span of time. Word on the street is that I’m strong and resilient, but I almost never feel this way. I’m proud of myself for sticking my neck out when I’ve been in need, though. This is something I’ve never been known to do or particularly good at, but I’m finding life a little easier to handle knowing I’ve got a bit of extra help on the outside. Even if that help simply comes in the form of a smiling face willing to take me away from my own thoughts for a bit. Every little bit helps.

So I end this post with one request: always be kind. And when you’re feeling least like wanting to be kind, be even kinder. You never know who is so desperately relying on your kindness just to get through the day.

Go as long as you can, and then take another step.

Keep rolling under the stars

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Hi buds! This sure has become a pattern for me, huh? Dripping life updates at a glacial pace. I always apologise or throw up an excuse for why it’s taken me so long to post something new, but really I’m not all that sorry and I don’t have an ‘excuse’. I post when I feel ready to a) share and b) delve into the emotional complexities of the situations I’ve been going through. And at the end of the day, this blog is for me, mostly, and you just get the pleasure of coming along for the ride. So I say: you’re welcome. And also thanks for taking the journey with me. Coming to a cinema near you! Not really, but wouldn’t it sell!?

Truth be told, I’ve been plodding along rather contentedly the last few months. But today is World Mental Health Day, and I’ve been inspired by my colleagues who’ve taken time out of their days to share personal stories of struggle, with tips on how they’ve overcome them. I’ve been exceptionally reserved and introverted at work, keeping all personal details about my life to myself for various reasons. Mainly, I found it incredibly difficult dealing with the day-to-day once my colleagues at my previous job knew about the struggles I was facing. Though they all meant well and logically I was fully aware of this (even in the moment), it became far too painful enduring very personal questions, often uninvited. Once I opened up, it’s like I couldn’t keep anything to myself anymore. My story and my struggle were no longer mine alone, and everyone always wanted to know what was happening. When I left and began my new job, I vowed not to let this happen again, and reasoned the best way to avoid personal discomfort was to shut up and keep to myself. I think I’ve done quite well, though I’m not sure it’s really been as beneficial as I thought. I work with amazing people (hi colleagues!), and I do feel guilty quite often for not letting any of them in.

I genuinely believe talking about things out loud helps make even the scariest of scenarios seem a little bit less daunting. But I’ll tell ya from experience – it sure isn’t easy to start. A constant ripping-off-the-bandage feeling, most often accompanied by unwanted tears. We’re always embarrassed by our tears… why is that?

Anyway. Life. What’s happening? How am I? Well, as I said, I’ve been relatively fine considering most things. I want to attribute this to growth: learning how to better cope, how to respond to my own reactions, talking to people when I need guidance. I realise that I’ve not actually been better, but the improvement in my response and recognition hasn’t gone unnoticed. For example, just the other night I had a panic attack. These are not uncommon for me, and they’re really horrific to experience. I liken it to feeling as if you’re drowning, in quicksand, being fully lucid yet paralysed, in -100 degree chill. It’s awful. But this time, I felt the panic attack coming on, was able to tell my husband just before and he helped me get through it; talking to me, insisting I try drinking water, rubbing my back. Within minutes, I had regained control and was out of the panic attack. It’s the quickest I’ve ever done it, and to me that feels like progress. I’m still the same person, but maybe a better version of myself. It’s taken awhile to get here, though, and a whole lotta courage.

And it’s never really done.

Things have been especially tough for, gosh, an entire year now. My husband’s seemingly ever-evolving medical issues have more or less called the shots on the daily. However he feels is how the day goes. On bad pain days, which are most days now, all responsibilities fall on me. I know he absolutely does not mean for it to burden me and I know it kills him to ask me to do something like get him a glass of water because he simply can’t bear to stand up, and I hate he subsequently experiences two kinds of pain from these situations, but it has been hard for me. I’ve had to literally learn how to cook edible meals or force us both to starve on days he can’t cook. I’ve had to run across the city at the last minute because he needed me for emotional support during a flare up. I had to paint almost the entire flat by myself because he couldn’t muster more than near 10 minutes on his feet. I’ve had to abandon family events to get him home and back in a comfortable space. I’ve become a human WebMD. I’ve been forced to become physically stronger so I’m able to push a man twice my size in a wheelchair. If I’m ill, but he needs me, he comes first without hesitation. I’ve had to watch the love of my life continually suffer, unable to take away his pain. Still. I’m honestly still so exhausted every minute of my life, but I do all of this and more because I want to. Because that’s what love is about: being partners, and helping each other when needed. I do not resent him or blame him for any of this, and he knows that, but he also knows it weighs on me. We do what we can for each other, when we can.

Recently, we’ve learned he’s vitamin deficient, which has caused severe bouts of dizziness and too-many-to-count near-collapses. This deficiency has appeared to cause even more problems with his nerve condition, though doctors haven’t medically linked the two yet. We’ve become so astute to his symptoms, we can’t help but notice the parallels of pain flares and dizzy spells. We wonder how long he’s been so deficient? Was he always? Is this something we missed that could’ve prevented further damage had we realised sooner? Is this why the spinal cord stimulator hasn’t been helping? It’s impossible not to wonder these things, but completely fruitless at the same time. We know this. Yet we still wonder. It keeps me up at night now, despite already having issues with insomnia.

Dealing with this has never gotten any easier. I’ve just gotten better at it. I’ve stopped allowing myself to feel like I’m missing out on something by staying home with him because I want to stay home with him. I don’t get upset when he has to tap out of an activity quickly and asks me to step in because I expect this now. Well, I’ll be honest, some days I do still get upset because it gets hard ya know? But I’m so much better now.  We didn’t choose this life. We didn’t ask for it. We don’t want it. But it’s the life we have. We’re doing our best to make it work for us.

I can say today, with the utmost pride, that my husband has actually been an inspiration to me, despite what he may think sometimes. One day not too long ago, he announced to me that he was done feeling sorry for himself and letting his nerve condition determine his life. And that was it. Though it very obviously still does make most of our decisions for us, he no longer gives CRPS power over him. It’s amazing. He’s gotten so much better at acknowledging the pain, adjusting his actions, and getting on with things. He still wants to go for walks with me even though I know it causes him a great deal of pain. He doesn’t want to miss out on things he genuinely wants to do, and though it took us more than 5 years to get to where we are now mentally and emotionally, I am constantly in awe we’re managing it. He’s excelling at work and still makes it into the office every single day, even though he has to get a cab to and from. He’ll text me in the middle of the work day saying he’s in so much pain he wants to throw up, then after a quick pep talk gets right back to work and never gives up. If you want to know strength, you should meet my husband. He doesn’t make it look easy, but he makes it look achievable in impossible situations. I admire him more than he realises. I aspire to be this strong.

My biggest struggle of late is not being as honest as I can be about my issues with people who care about me. I don’t let anyone in because I find it hard to make them understand what I’m going through. They don’t understand how severe it is. They don’t see it. And as a result, I get angry and incredulous and stubbornly decide I’m done sharing with everybody because they just don’t get it so what’s the point? And when anyone seriously asks me about my husband and how he’s doing, I get emotional every single time. I can’t help it, and I hate it so much that that also prevents me from sharing. But the catharsis can help. I endeavour to try to be more open for my own sake. It won’t happen over night, but if I can claw my way out of a panic attack, then there’s hope for me yet.

There’s hope for all of us, really. We’ve just gotta believe it ourselves.

When you recognise that you will thrive not in spite of your losses and sorrows, but because of them, that you would not have chosen the things that happened in your life, but you are grateful for them, that you will hold the empty bowls eternally in your hands, but you also have the capacity to fill them? The word for that is healing.

Wants, needs and the struggle of choice

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“One of the most troublesome things in life is that what you do or do not want has very little to do with what does or does not happen”

We are creatures of habit. We like routines and plans and knowing what’s in store. Let’s face it – most of what we choose to do is chosen merely to try to force a particular, desired outcome later down the line. Those of us who claim to be spontaneous and adventurous aren’t 100 percent honest because even then, we are making a choice to obtain a specific result. The difference is we do so suddenly and very quickly, right? Personally, I’ve always been the type of person to prepare and plan well in advance to avoid any surprises popping up in the future. Realistically, this is an absolute ridiculous mindset because it’s impossible to deter all surprises, but I did my best to mitigate as much as I could. I always had a plan and a pocket calendar to write it all down in pen – never pencil. There’s no room for uncertainty like that in my planner! But my problem was that although I felt prepared for the things I had control over, this didn’t equip me to deal with changes to my plans gracefully. So while 21-year-old Tanya would’ve insisted that I would be out of the country by the summer after graduation and writing for some great foreign company, she was blindsided by what the universe actually threw at her. So while my plan was and still is to get out and live elsewhere, the timing has changed drastically and I was forced to readjust. And that, as some of you may know, is not an easy thing to do.

Hunter S. Thompson said, “On some days, you get what you want and on others, you get what you need.” What tends to be tough to swallow is that what you want may not be what you need… and vice versa. They don’t always go hand in hand, so how do we prioritize between the two? To put it more simply: which matters more? Obviously, this is completely up to your own interpretation, but I think it comes down to specific scenarios. For example, I want out of my hometown, but I need to feel secure enough to move far away. My desire to move is completely reliant on being properly prepared to actually follow through. So in my mind, this means many things: secure finances, sufficient work experience and timing. However, I always struggle with that last condition because that falls outside the realm of my control and sometimes my understanding. How will I know if the timing is right or not? Is the timing a direct result of whether or not I have the other two conditions fulfilled? And when you spend so much time trying to figure this all out in your own head, it tends to end with you throwing your hands up in the air and sighing, “Well, hopefully I’ll just know,” as if we think our intuition will guide us the right way. But our gut’s been wrong before, remember? Oh, great. Now what?!

In my personal example, I chose to go with what I needed more so than what I wanted at that moment in time. It was a painfully hard decision to make that was met with many tears and empty demands to know why (Oh, why!!) I had to make such a choice. I had a limited amount of time to decide, for myself, what mattered most. That’s an immense amount of pressure to deal with without knowing what, exactly, would follow. So did I make the right choice? I have no idea. Ask me in 20 years. For now, I think it’s best to just hunker down and stick to what I chose. Ride it out to the fullest and revel in it. I didn’t throw my fate up in the air to chance, so I have to be content with my decision.

“I’ve been doing this a long time, and I’ve come to learn that predictions don’t mean much. Too much lies outside the realm of medical knowledge. A lot of what happens next comes down to you and your specific genetics, your attitude. No, there’s nothing we can do to stop the inevitable, but that’s not the point. The point is that you should try to make the most of the time you have left.”

I know that even more changes will spring up down the road and I will have to face them without having prepared for them. That’s the way life goes, right? Sometimes I’ll have to deal with things one-by-one, other times everything will barrel toward me at full speed all at once. I will continue to try to plan for a future the best I can, but I have to allow myself some wiggle room for when the plan has to change. It’s all about attitude and how we act when things don’t go our way. As I said, we can’t control time but we can control how we spend it. So make the tough choices not because you have to, but because you want to keep going and living and growing. And when things don’t exactly go to plan, don’t take it personally. Adjust. “‘It’s not a personal world,’ he told me, ‘no matter how much of it recognizes you on the street.'”

No kidding

“If you’re feeling blue, try painting yourself a different color.”

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As a young adult, the majority of my life has been spent dragging my feet through school hallways and spilling coffee on my clean clothes. In hindsight and after reading many articles on the subject, I probably shouldn’t have started drinking coffee at age 5, but too late to worry about that now. In any case, even though I’ve spent so much time in classrooms, most of my learning experiences happened outside those walls and from nonprofessionals. Honestly, a lot of what I’ve learned came from listening to and spending time with kids. What made me realize this? Well, I was sitting here thinking, “Gosh, I really want a glass of champagne, but I don’t have a reason to celebrate and maybe I really shouldn’t.” And after I thought about it, I changed my mind and decided isn’t being alive a good enough reason to celebrate? A kid wouldn’t ask, “should I eat this mud pie?” A kid would simply do it. I may have grown up and I’m much more capable of grasping the concept of potential consequences, but I don’t want it to stifle my freedom. So then this got the gears turning and now I’m thinking about all the things little munchkins have taught me and why they’re valuable lessons.

As a young female, vanity has always been a (sometimes unwelcome) concern in my life. I’ll check my outfit in the mirror several times before leaving the house, and sometimes I’ll even head out feeling like even after spending two hours getting ready, I still could look better. I obsess over the clearness of my skin and cover “blemishes” with as much caked on make-up as possible. I dye my hair to cover premature grays, I try to buy trendy clothes and accessories, I primp constantly. I put so much effort into looking seemingly suitable for public eyes, and then I spend less than five minutes with a sloppy, messy, carefree little girl and suddenly she has me questioning every minute effort. She’s wearing multi-colored, striped cotton leggings, a bright pink t-shirt with a daisy on it and lime green Crocs. Not to mention her hair is all kinds of crazy and her hands are far from clean. But the only time this little one looks in the mirror is to check my face painting handiwork before proceeding to jump up in down in utter glee. If only we could gather up this loosey-goosey, untroubled childhood attitude and keep it with us as we grow older.

When you ask a child, “why are you doing that?” it isn’t uncommon for his or her response to be, “because it’s fun!” If you asked me why I’m applying for jobs, I would most certainly say because I need to not because it’s fun. Why don’t we do more things just because we enjoy them? As adults, we find plenty of excuses and reasons why we are no longer able to do something we once enjoyed. Money is tight, time is limited, getting too old – so many tired, worn out excuses that get way too much screen time. “Katie, why are you pouring glue in your hands?” Because it’s fun to peel off the dried glue, duh! “Riley, why are you acting like a puppy?” Because it’s fun to pretend! We should do what we want even if it has no value other than pure, uninhibited enjoyment.

And what’s more is that children are unafraid to openly express their emotions. If they miss their mommy and daddy, they’ll cry and screech and yell it at the top of their lungs without fear of embarrassment. If they missed you, they’ll come storming down the road to meet you the second you come around the bend, happily screaming your name, take a running leap and land in your arms. If you hurt their feelings when you call them a dodo bird poopy brain, they have no problem telling you straight to your face. If they have to go potty and you tell them to wait a few minutes, they’ll pull on your sleeve and make demands until you attend to their needs. We grownups tend to mask our feelings or hide them and sometimes we aren’t fully honest when we should be. Leah has no problem telling me that I need to hit the gym, but some of my best girlfriends wouldn’t dare even hint at it! If I tell Noelle I’m sad today, she’ll tell me to stop being sad and just be happy. The point is, kids tell you how it is (at least in their own eyes) and it’s refreshing. Why hold back?

And finally, one of my favorite things I’ve learned from kids is how to turn mundane tasks into a game. Picking up toys can turn into a fun basketball game as you chuck each one into the toy box. The rewards system is highly effective as a kid and an adult too. Finish this blog before midnight and I can have a second glass of champagne! Pick up all the crayons and you can have a piece of candy! Life doesn’t have to be boring if we can find ways to make it fun. Disappointments just give us a reason to look forward to improvements. Success is so sweet because we know it took us a few oopsies to get there. Just because we grow up doesn’t mean we should lose our innocent excitement; it doesn’t mean we should stop thinking the word poop is funny; it doesn’t mean we shouldn’t eat milk and cookies until our bellies ache; it doesn’t mean we should grow up and forget to live. Life is still exciting and new each day and I think it would do us all some good if we acknowledged and accepted our inner child- sticky hands, smelly feet, silliness and all.