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.

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.

The cost of love

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When you’re young, you never associate paperwork and deadlines with a wedding. Planning a wedding is meant to be romantic and exciting, and it’s supposed to be that “making your dreams come true” kind of time. Dresses and tuxes and flowers and dates and parties and venues – all of these things happily float around in your head until it all comes together, culminating in the best day of your life. Well, that may be true if your significant other has the same nationality as you. You could throw together a wedding tomorrow if you were in a rush and get on with your lives together immediately! But some of us aren’t that lucky.

I love my fiancé more than life. I’m so happy I met him and I’m thrilled to some day call him my husband. But while I’m still excited to actually get married, the planning process of figuring out how to actually marry my English fiancé has almost completely sucked the excitement out of my engagement. Isn’t that awful? Here’s why:

For my fiancé to come here, we would have to apply for a visa. Have you seen or heard of the show on TLC called “90 Day Fiancé?” It’s kind of like that, except way more complicated. If you happened to watch the program, you’ll have noticed that when it first started, each couple mentioned how they’ve been with his or her significant other for at least a year or more. That duration is important to note because that means there was about a 6 month block of time where they were just sitting around waiting for the visa to simply get accepted. Why would it take that long? Well, to get what’s called the K-1 Visa, there are roughly one thousand steps. First, you have to simply petition for the visa. That’s not applying, folks. You have to state your case before you can even apply! And this petition, in which you must provide biographic information (proof of citizenship, census evidence/school records or/certificates of religious rites/every minute detail of your personal existence), a police certificate (preferably a clean one!), evidence showing that you plan to marry within 90 days of entry in the U.S., evidence that you have met in person, more forms (G-325A) specially formatted passport-style photographs taken within 30 days of filing the petition and other little details are all for the low, low cost of $400! After all that stuff is turned in, then the U.S. government may still turn around and request more evidence or require you to be interviewed before accepting your petition. When and if your petition is accepted, THEN you can apply for the actual visa. This part also includes the interview. You know, like in the movie The Proposal when Sandra Bullock and Ryan Reynolds try to get married. Seriously, it’s very similar. If all your paperwork checks out and you can prove on paper that you’re not making up your whole history and relationship, then you have to sit before a government employee and answer any questions they want to ask about you and your relationship. I’ve been told that these questions can get quite personal as well, so that sounds fun, huh? I guess you just have to hope that your relationship sounds legitimate! Plus, at this interview, you’ll also have to bring with you an incredibly insane amount of more paperwork and evidence. This stuff includes things like medical records and a recent examination demonstrating your current health, evidence of financial support (I-134) that proves that your partner will never become a financial liability on the U.S., more evidence of the relationship’s validity, more photos and, of course, payment of all the fees involved. And again, even after all this, the government can still ask for MORE. Waiting for all of this to come through can take anywhere from a few weeks to a few months.. or a year. So let’s say after all this work, the visa is approved and your partner can now come and marry you in the U.S. When they show up and go through customs, there is still the possibility that they are not granted admittance into the country. Nice, huh? If you can pass go, then you’ve got 90 days to tie the knot or get gone, buzzo! Once that rushed marriage has taken place, you can apply for a green card to become a permanent resident. Yup, more paperwork, more waiting and more gambling. Even if you’ve gotten married, you can’t legally work in the country until you’ve applied for and been granted authorization to do so (I-485). So after you’ve dropped a couple thousand dollars on applications, petitions and forms, you may have tallied anywhere from 6 to 8 months worth of just waiting. Let’s hope that through all that stress, you were still able and excited to plan your wedding to take place in that 90 day time block!

What’s more is that while you’re waiting for your significant other to be able to move to you and be with you for good, you put your visa acceptance at risk if you plan any long visits to see each other during the waiting period. Why? Well, you have a love interest in the country and you’ve already expressed a desire to stay with them, so who’s to say you won’t just pop over for a visit and then never leave? Can’t have that! That’s illegal immigration!

So after I became frustrated and concerned that I couldn’t personally meet the threshold of the minimum income requirement to prove financial stability, and how the wait time was anywhere from half a year to 8 months, I turned to see if UK immigration was an easier process. Although very similar in terms of the process, I found that the red tape was a little looser and more flexible. Financial requirements aren’t as rigid and allow for more options, the paperwork and applications are processed and accepted (or denied) in a much quicker time frame (as soon as a few weeks!), and there aren’t fees on fees on fees each time a new form is filled out. However, the process is still just as much of a gamble, still very costly, very demanding and stressful and more or less the same as the U.S. process. The main things that appealed to me were the possibility of moving quicker and the ease of understanding the application process.

So while we wait the required 6 months that is necessary since we both accepted new jobs and need to do so in order to meet the financial requirements for either country’s visa, all I can do is anticipate and prepare as much as possible for the upcoming work involved in getting married. Now you can see why it’s upsetting and difficult to plan your long-awaited for wedding (seriously long) when you’ve got so many other things on your mind! The outside support from friends and family who are genuinely excited for our happiness helps redirect the focus from paperwork to bliss. Nevertheless, as with many things in life, there are naysayers that chime in, and sometimes it seems they’re louder than the cheerleaders. Love found across countries is a seesaw dipping back and forth between pure joy and stress.

And although I wouldn’t trade my fiancé for anything or anyone in the world and I don’t regret saying yes to marriage, I urge you to look at your own situation and learn to appreciate things that you two can do that isn’t a guarantee for others. Be able to look at your relationship and say, “yes, this IS a lucky kind of love” and learn to stifle your complaints about doing long distance or arguing over where you want to live or what have you. There are always ways in which it could be harder and there will always be people out there who may have things a bit more complicated. Love your love and always be grateful. And always remember, through any and all the stress, you’ve always got each other. Together is where you want to be, and do what you’ve got to do to get there. Whatever it takes!

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.'”