Tag: determination

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.

Finding home

12241591_10153788546021350_2546363106105606442_n-1It’s been six months since I’ve officially relocated to the UK, and to say it’s been a rollercoaster ride is a slight understatement. I anticipated an adjustment period, considering the fact that I was leaving behind everything familiar and opting for complete immersion into a new home, new environment and new people. But despite having lived in the UK for a few months in the summer of 2012, it was far more destabilising this time around. I think the fact that this move was permanent contributed to that emotion. But six months in, I think I’ve found my centre at last… and the ability to write as if I were a native Brit.

Anxious excitement dominated my first month or two, which makes sense because I was eager to close the gap and be here, but I had no idea what life would be like once I actually moved. That realisation started to seep into my brain toward the end of my second month, beginning of the third. My excitement quickly turned serious when I began looking for work to fill my free time and become a contributing member of society. I began this stage with apprehension, knowing full well how difficult it was finding the right job back in the states after graduation and worrying I’d find a similar struggle here. Now that it’s over with and I’ve found work, I feel pretty confident saying it was easier and quicker to find a job than it was a few years ago, but it certainly felt like a never-ending, soul-crushing experience.

It was about when I’d sent out around twenty job applications and the rejection emails started coming through that I felt myself slipping into a darker mind-set. I swiftly went from “I’m going to get a job!” to “I’m never going to get a job,” which, as you can imagine, wasn’t a fun thought train to ride. For the next few months, I was a wretch to be around (shout out to my amazing husband for putting up with this nonsense!), having slipped deeper and deeper into the rabbit hole with each passing day. I slept for ages and never felt rested when I finally pried myself out of bed, I hardly ate, I very rarely took the time to dress myself or make an effort on my appearance and I started questioning my every decision. But from the outside looking in, I made damn sure that any and all my connections back home and on social media thought I was cheery and enjoying my time off work because I didn’t want anyone to think I was pathetic or wasting away in London – even though that’s exactly how I felt.

I’ve battled depression before, but this was a new level I hadn’t experienced yet. I was so deep in it that it took me a very long time to even notice that I was, in fact, depressed. Coupled with the extreme anxiety and desperation to find work, it was a debilitating tug-of-war that left me utterly empty and defeated. Everything ached all the time despite having hardly moved all day every day, headaches plagued me regularly and I sought refuge under the covers more often than not. Part of the time, I wondered if I was genuinely sick and contemplated visiting my GP, but in hindsight, I now know better. Some days I was able to pull myself out of the fog to send out another job application or two, but eventually it became so much work just to think of positive things to say about myself in a cover letter that I just left it… for weeks at a time.

After a few months, I finally understood what was going on and reached out to my husband to help me not only find positivity, but to fully invest myself in finding a job. Thrilled that I was taking the initiative to make a change, he gave me a new perspective and ideas on how to improve my job search tactics. I’m forever grateful to him for his help, because not only did it give me the boost of encouragement I needed at the right time, it also brought responsive replies from the new jobs I was now applying for. These replies eventually led to interviews where I felt I could finally demonstrate, in person, what I could bring to the table.

An onslaught of rejection emails were replaced with interview opportunities and eventually having to choose between two jobs. What started out as a bleak search turned into a plentiful choice, and the sudden change in my outlook was enthusiastically welcomed. I finally felt like I had purpose again, had my footing balanced and could re-emerge into the world bright-eyed and bushy tailed.

These last six months have served as a harsh reminder that life is better handled with some outside help, and it’s okay to ask for words of comfort when they’ve been depleted from your own arsenal. I’m much happier now even compared to when I first arrived on UK soil. My relationship is stronger than ever, I’ve got a job I enjoy in a brand new industry and I’ve learned how to recognise negative thinking and come out the other side a better person. It wasn’t an easy journey and I don’t hope to repeat it any time in the near future, but I think it was necessary to teach me that I have value even when I don’t feel like I do. Starting your life over at a young age is an intoxicating idea, but it’s certainly not for the faint of heart. I’ve had to remind myself that most people would also struggle with such drastic changes all at once, and I’m not a weaker person because of it. I’m indebted to those who helped me realise my worth during a tough time, and encouraged me to find different ways to make London feel like home. I can confidently say that now, that’s exactly what it feels like. Even if it took me six months to get here. Better late than never, right?

Home is where you make 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.