Tag: mind

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.

Thicker than water

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Some people survive and talk about it. Some people survive and go silent. Some people survive and create. Everyone deals with unimaginable pain in their own way, and everyone is entitled to that – without judgement. So the next time you look at someone’s life covetously, remember: you may not want to endure what they are enduring right now, at this moment, whilst they sit so quietly before you looking like a calm ocean on a sunny day. Remember how vast the ocean’s boundaries are. Whilst somewhere the water is calm, in another place in the very same ocean, there is a colossal storm.

This year has been simultaneously remarkable and harrowing. I always refer to my life as a rollercoaster because that’s how it’s often felt with the ups and downs and the loopty-loops. It still really does. And now as I sit here halfway through 2017, I’m quite thunderstruck just absorbing the fact that half of this year has already passed. Time is slipping through my fingertips at a rather alarming rate. Some days, it’s unsettling. Others, I’m grateful for it. Life is a balance, isn’t it?

I recently made a surprise trip stateside to see my family. Namely, I went back to see my grandparents who’ve not been in good health lately, as I’ve previously mentioned. When I was initially planning to go, I wanted to write about my week when I returned to London because I thought it’d be cathartic in some way. I’ve been back a week now, and my opinion has changed slightly. Part of me wants to spill every little detail about my week and commit it to ink, but the other part of me wants to keep it close, to myself and those closest to me. As a writer, the latter bit stresses me out a little. I’ve been relatively open about massive issues I’ve faced in my life, especially recently, and I do genuinely find catharsis when I put my feelings into writing. But my week in Cleveland was special, emotional and one I’ll forever hold dear. Because it feels cruel to write a blog and mention something as dramatic as a surprise trip 4,000 miles away and not say a peep about it, I will say this:

My week home was heart-warming, exhausting, happy, sad and very, very fulfilling. My grandparents and aunt were so incredibly surprised and thrilled to see me and spend time with me, and that’s all I ever wanted from the trip: to make them happy and aware that I was willing to drop everything in a heartbeat to be there for them. And I was. I was there. And I will be again if and when they want or need me to be.

It was not a holiday. It was not time off. I woke up every morning at 5am because that was 10am UK time and I worked a full day. Every day that week. Then by 1pm, the UK workday was over so I’d get ready for the afternoon and spend it with family. In the evenings, I’d squeeze in a few hours to see friends. I’d fall into bed every night absolutely shattered, mostly running on adrenaline, which seems to be my only fuel source this year. I rolled back into London on a Sunday morning and rocked right back to work that Monday. It was very hard, but I don’t regret doing it. It was the right time for me to show up, and I’m so, so glad I did. However, I have no idea how I’ll ever top that kind of gift! Think I set the bar too high for myself…

I still don’t know what’s next in this long saga of continuous chaos. Some days I’m optimistic and strong and cheery, other days I’m a moody, grumpy lump on a log for no discernible reason. Some days I’ll talk my friends’ ears off about what’s bugging me or what I’m excited for, and other times I force them into an awkward exchange with lots of one-word answers and uncomfortable silences. I don’t know how people are meant to handle the things I’ve been going through this year, and I don’t know that there’s really a guidebook for any of it either. Day by day I take things as they come, and meet them with whatever mood happens to me. I never have proof of my strength and I often feel like a wimpy, whiny baby, but I’ve been told that I’ve been doing okay so I take that as a success and keep moving forward.

My life isn’t better or worse than anyone else’s. While it’s hard not to feel like the world owes me something, I want to believe that everything happens for a reason. Maybe this year is a year for hard-earned lessons that will prep me for whatever 2018 has coming my way. I don’t know. I can’t know for sure. But what I do have now that I didn’t have before is experience. I’ve learned way more in these last few months – about myself, life, humanity – more than I ever could’ve imagined I would.

This life is precious. Although it’s cliché, you never know what tomorrow may bring. I do what I can in a day, and then I’m done with it. I make time for what I want and need, and do my best now to strike a better balance between work and my personal life. Work still seeps into my personal life, but it is a choice and not a requirement. I am grateful to have friends both here and in my hometown, all of whom show their support for me when I need it. Life isn’t about merely surviving – it’s about living, right? That’s what they say.

So I guess this post is my thank you to everyone who’s been following my life thus far, offering tid bits of ‘you’re doing great!’ and ‘thinking of you’ comments here and there. I imagine from the outside looking in it’s been pretty dramatic and entertaining, so I can’t blame you for wanting to know how I am and how things are going. Thank you for caring. Thank you for striking up conversations even if I look unapproachable. Thank you for spending time with me even on the days I’m not very communicative. Thank you for being constant beacons of light when I’ve not even realised I was in the dark. I am so very grateful that even on days I feel like I’m dealing with this life alone, I’ve never actually been alone. It’s been quite the adventure so far, hasn’t it? Here’s hoping for tomorrow…

Wealth of travel

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Certainly, travel is more than the seeing of sites; it is a change that goes on, deep and permanent, in the ideas of living.

A gypsy is a nomadic individual, commonly described as free-spirited and unattached. Although you’re probably imagining Esmeralda from The Hunchback of Notre Dame, gypsies do still exist today, mostly populating parts of Europe. And although all people have basically adapted and changed to accept a new modern lifestyle, gypsies still remain true to their nomadic heritage. I have never met an individual that identifies as a gypsy, but I’ve met the other extreme: the homebody settler. These are the people who make a home and refuse to leave it or explore the rest of the world not because they’re unable financially or for other legitimate reasons, but because they simply don’t want to. Now, I’m a firm believer that traveling does a person good for many reasons. It broadens your horizons, you get to interact with people who may have different ideals, beliefs, cultures or lifestyles than what you’re used to, you can explore history firsthand and with your own eyes, you can physically separate yourself from the stress that awaits you at home — quite frankly, I can only think of seriously positive reasons to pack up and go elsewhere every once in a while. Perhaps I am entirely biased, being a self-proclaimed nomad in training, but how can you fully understand what is happening around the world if you’re only reading about it or hearing about it from others? There’s no better way to understand than to put yourself there!

There are plenty of lists out there about why you should travel, but there are a few key reasons I think are most important to highlight.

1. Traveling is a learning experience. The act of traveling outside of your comfort zone (metaphorically and literally) forces you to figure things out on your own. You can learn how to read a map, how public transportation works, how to manage your time between flights. You learn these things because you have to in that moment otherwise you might miss the next train! But you also get to learn in a broader way – learning how certain people live and how it differs, learning about the past, learning about world, regional, local issues, learning cultural differences and language. The world quickly becomes your classroom and -gasp!- you’re a willing, eager student now! When you travel away from home, you are opening your mind a little bit more each time and learning and changing all the time. Heck, you might find yourself jumping ship from ideas you once held firm simply because travel opened your mind to other opinions. Trust me, it happens!

2. Traveling is good for your health. How many times have you gone on vacation and never left the hotel room? Never? Exactly! When you go somewhere away from home, you’re much more likely to be active and constantly on the move. Sightseeing, hikes, walking around famous shopping centers for hours – all of these things keep you active, and when you’re excited about something, those good chemicals start flowing in your brain! We all know about the scary research about desk jobs and how harmful they can be to your health when you’re sitting for long periods of time, so use that as your excuse to pack your bags and get out for a while. Besides its positive effects on medical health, traveling can also do wonders for your mental health. Shred the stress, let down the barriers and accept the exciting act of adventuring. It’s liberating!

I expected my list of reasons to travel to be much longer than two reasons, but quite frankly, I think that’s plenty. We’re encouraged to travel a lot when we’re young, but I don’t think age matters. The only reason we’re told this is because when you’re young, you have less responsibilities and more free time. However, I don’t think it matters when you go so long as you do go. It’s never too late to learn and grow. There are no excuses that should permanently thwart your ability to travel. If you don’t have money, start saving. If you don’t have time, make time. If you don’t have a plan, get creative. If you’re not uncomfortable, you’re probably not growing. So don’t be afraid of having to bunk down in a hostel in Europe because those scary tales about hostels being gross, dingy and unsafe are all just that — tales! And even if you do wind up in a less than conventional situation, imagine how fun it’ll be to tell that story later on? We learn as we go, but if you’re standing still, you probably won’t learn as much. Just go. You’ll be glad you did.

I haven’t been everywhere, but it’s on my list.