Living well

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Hello world! Did ya miss me? I’ve been noticeably silent for the last few months for a myriad of reasons, but I finally feel strong enough to give a little insight into what’s been going on.

I’ve been planning to write this entry for weeks now, but I admittedly haven’t been ready to face my own feelings. It’s taken a lot of introspection, some research and ultimately a self-help book about ‘living well’ with chronic pain to give me the assurance that it’s okay to put this out into the world. I hope my vulnerability helps someone else, just as other people’s have helped me.

I’ve changed a lot over the course of a few years, and I’ve noticed how much I’ve changed just in these last few months, too. These changes have been mental, emotional and in some cases physical.

I’ve struggled with anxiety all my life, but the last six months alone have magnified my anxiety and stress levels so much that my body has reacted in less than pleasing ways. When dealing with stressful situations in life, it can make it harder to handle when physical manifestations of your stress also prey on your insecurities. Due to the nature of my husband’s degenerative condition, it’s forced us into a more sedentary lifestyle. I can see how my own muscles are deteriorating, how I’m becoming rounder around my waistline, how easy I am to tire. But depression keeps me inactive and I feel trapped in a body I’m not happy with. My skin has been my biggest battle, though. I’ve always tried to look after my skin and I’ve done well keeping it clear and healthy. Until now. My skin has been no match for these raging stress hormones, and each day is a desperate firefighting attempt to mask the acne forcing its way to the surface all over my body. I hate it. Most recently, I’ve apparently been so stressed that I’ve earned unsightly hives and rashes cropping up in places I can’t easily hide. I look in the mirror and see that my body is not happy with the trauma I’ve put it through, yet I feel helpless and unable to make it pretty again. I’ve dealt with scary bouts of vertigo, unrelenting headaches and body aches that obviously are not the result of any physical activity. I am tired. Each day is an exhausting fight to find a pinch of positivity and motivation to just keep going. Some days I can’t. Some days I’m a miserable oaf no one can stand to be around. But that’s okay. And I’m learning that it’s okay not to be okay sometimes.

What’s triggered all this, you ask? Well, as I’ve mentioned before, my husband’s condition has gotten worse. I don’t think I’m strong enough yet to provide specific details into how this has come to pass in such a short span of time, but it’s been rough. We tried some experimental procedures that either didn’t work or made things worse, and the journey ended with an explosive argument with the lead pain clinic specialist kicking us out of our last consultation. It’s hard stuff when an expert looks you square in the face and says they’ve got no other ideas to try. Emotions run high on both ends, as you can imagine. It was a hard day. Harder still to then have to pass that info on to concerned family and friends, who, of no fault of their own, just genuinely don’t and can’t understand on the same level. This is life with chronic pain.

The way this journey has gone, though, has given me a different outlook and approach to a lot of things in my life. I have less patience for things and people who don’t bring me joy. I simply don’t have the time or energy to put effort into things that aren’t or won’t be good for me. There are just more important things to deal with, I’ve realised, and my own wellbeing has to come first.

Some of the changes have been subtle, while others have been very obvious. I’ve filtered out friends I felt were putting unnecessary negativity into my life. Friendship should be fulfilling and positive, and the minute I feel strain I do something about it. Sometimes it’s been as simple as unfollowing people on social media because what they were posting caused me distress of some form, in other cases I’ve just stopped talking to people. I recognise that no friendship is perfect, but when the cons outweigh the pros, I know it’s time to make a change. I hope these people understand that at this point in my life, I have to put myself first and look after my mental health. I’m open to letting people back in, but that doesn’t always happen. I have to do what’s best for me.

Despite my depression, I do my best to make it out and about. The situations lately have impacted and escalated my social anxiety because I know people will ask about my husband, so a lot of times I’ve had to force myself to leave the house insisting that it’ll be good for me. Despite my fear, I still get out and it is usually good for me. I’m actually very proud of myself as this has been one of the battles I’ve struggled with the most. I do not want to become a recluse.

I’ve also been doing my best to address my mental and emotional wellbeing. I’ve tried meditating, I’ve downloaded apps, I’ve researched and read my way into understanding. I’m giving myself a chance to do better and feel better, and I think that’s huge. The thing I’m most proud of is that I’ve finally learned how to walk away when something is causing me too much pain. I know my limits now better than before, and that has made all the difference.

I appreciate the help and support I’ve gotten whilst dealing with this seemingly unbearable situation in life. More than anything, I’m grateful that when I’ve said ‘I’m not ready to talk about it’, my family and friends have respected that and given me the time I’ve needed to process and understand my own feelings in my own time. I imagine it’s hard being on the outside and not knowing how to help, so I’ve got a few pointers for those who want to be involved in any capacity. Above all, please know that if you’re in my life, I am so thankful for you. For the light that you bring when I’ve felt shrouded in darkness, for the fun and humour, for the unwavering support and kind words, for letting me be angry at the world and complaining to no end. Thank you. You’re one of the reasons I get out of bed every morning. Know this.

Here are some helpful pointers and advice on interacting with those living with chronic pain, specific to my situation.

  1. Don’t let the first question out of your mouth be ‘How’s your husband?’ Better yet, don’t let that be a question at all. No matter how well-intentioned, I don’t like feeling forced into talking about a situation that is physically and mentally painful for me. It’s also very, very personal. Try asking how I’m doing or what I’ve been up to, and talk to me as if I’m my own person with my own life separate to the health situation that is already always hovering over my head. I’ll appreciate talking about things that make me happy and distract me.
  2. Speaking of distractions, get me out of the house! If you really want to help, I think this is one thing that I am not so very good at. I am constantly worrying about my husband, and although I feel extreme guilt any time I’m out enjoying myself, it’s good for me. Even if it’s as simple as coming over and drinking cheap wine for a few hours, every second spent not fretting or overanalysing is wonderful.
  3. Don’t say open-ended comments intended to help but put the onus of doing something about it on me. For example, don’t say ‘let me know if there’s anything I can do to help’. That puts all the responsibility on me – the person who is barely keeping her head above water. Please don’t do that to me because I won’t ask for help. Be more specific or take initiative.
  4. Please, please, please don’t offer unsolicited advice about my husband’s condition. I’ve read everything there is to read, I’ve spoken to so many medical professionals I’ve lost count – I promise that whatever you suggest we’ve either tried already or it’s not something that could help. He has a rare, complex condition that the best brains in the biz still only fractionally understand. I appreciate you wanting to offer advice that will change our lives, but trust me when I say you can’t do that for us.
  5. Following that, this is not only medically wrong to say, but it’s also hurtful: We don’t want to hear ‘hope he gets better’ or any variation of the sentiment. He will not get better. There is no cure. There is no reversal. There is no actual treatment to make it better. There are only ways to manage the situation in ways you think you can live with. Hope is important, but naivety will get us nowhere.
  6. Also, please refrain from making comparisons. I respect that you may be trying to be empathetic by comparing that time you sprained your ankle to my husband’s debilitating chronic pain, but I’m sorry… it’s completely different and does the opposite of comforting us. It makes us angry. It makes us feel like you are taking a horrific situation and trying to make it about yourself. And especially: you’re talking about something that gets better when comparatively our situation will not. No matter how well you intended the comment, it feels cruel to us. Your sprained ankle will heal and the pain will eventually subside. Your situation is temporary whereas this is our life. Please do not belittle us or try to minimise the situation. And for crying out loud, do not ever say ‘it could be worse’ and give an example of something you deem worse. That is not only subjective, but absolutely unhelpful. Knowing someone has it ‘worse’ isn’t going to fix anything, will it? Let this situation just be and let us deal with it on its own level, irrespective of anything else.
  7. Tell me about yourself. I want to hear about your life. I want to hear about your happiness and successes and triumphs and funny moments. Don’t hold back because you worry I’ll feel left out or jealous. I care about you and my struggles should not overshadow the good things in your life. I’m capable of shelving my own feelings to support yours! That’s what friends are for. And oh, my gosh. Comic relief is the best medicine. Please don’t withhold that from me! I love laughing and I’d love to do it more often.
  8. Be kind and considerate. It seems so simple, but I feel it necessary to say. When someone is dealing with an ongoing traumatic life event, emotions are heightened. Something as simple as forgetting to text back may seem trivial to you, but feels incredibly isolating and intentional on my end.  There’s nothing worse than feeling forgettable during a time you already feel lonely. Tell me I look good when you think I do. Be complimentary and genuine. Consider my feelings, too. I am strong, but I waver. We all do. A little kindness goes a very, very long way.
  9. Do your own research if you have questions you either don’t feel comfortable asking me or feel it best not to say. Please, Google Complex Regional Pain Syndrome. Don’t make me recount the sad stats or explain how it’s colloquially known as ‘the suicide disease’. I’m sure you can see how that is not a subject I want to constantly explain in detail. Every once in awhile, a news article comes out that touches on the subject, too, showing other real life people dealing with the same thing. Read them.
  10. Don’t give up on me. Sometimes I’m terrible. Sometimes I let my emotions get the best of me. Sometimes I do a bad job, I make mistakes or I don’t give you a chance to come in before I shut you out. This is all new territory I’ve never experienced before and I’m learning as I go. I’m bound to mess up. I hope that you don’t take anything personally and will still see me as that bright, fun-loving girl I was before this diagnosis. She’s still in me and comes out every once in awhile. I’m learning to find a better balance, so please bear with me on this journey. I’ll get there.

We haven’t given up. I haven’t given up. Medical science takes leaps and bounds all the time, and I’ll never give up hope that this chapter in our lives is only temporary. But until that day comes, I’m learning to live with it and to treat myself better. Boy, is it a process, but, as the poet Rupi Kaur says, here I am living – despite it all.

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2017: a riptide

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By this time every year I find myself quietly contemplating all that’s happened to me and around me, and often speak to the passing year directly – as if it can hear me from within my head. There are some ‘thank yous’, as you’d expect, but most of them are cloaked in a thin veil of resentment. I’ve put off writing this standard farewell to the year because I’ve been struggling coming to grips with its end and all that’s taken place. I don’t know how I feel about the year as a whole, but I can assign thoughts and emotions to certain aspects. So I guess that’s what I’ll do. Partly to dissect it myself and partly to inform my dear friends following my life journey. I present to you, my 2017 adieu.

As most of you know from following my social media channels, 2017 started out with a whopping amount of stress and anxiety that followed for the majority of the year. My husband had spinal surgery as our last ditch effort to relieve him of his chronic, debilitating pain. January and February were spent trying to sort out the surgery, which simply translates to lots and lots of appointments, phone calls and uncertainty. Eventually, the time came. From the end of March, I became the nurse I never wanted to be until he got back on his feet and gained some independence back. It was a rollercoaster. It was emotional. It was absolute hell. But we got through those many months and the surgery was successful. We had an entirely opposite outlook on life suddenly, thrilled we took the chance and grateful for medical science’s breakthrough for his nerve condition. The improvement was so massive that we were even able to book a long holiday to Hong Kong and Thailand where we were able to do SO much that we’ve quite genuinely never been able to do. Things that normal people do without thinking about it: exploring new cities by foot, swimming, being silly… not thinking about restrictions or worrying about triggering a pain flare up. It was relaxing and blissful and we felt like we had a new lease on life. I can never properly express how amazing this holiday was.

We had about 6 months of this wonderful high before it came to a screeching halt. I haven’t spoken openly about it to most until now. It’s been hard to admit after all our friends and family were so happy with the surgery’s success. I mean – put yourself in our shoes and I’m sure you’d sympathise. We thought we fixed everything. We thought we had our youth back. We were celebrating. We were making plans… and then one day, my husband woke up and he was in pain again. Pre-surgery pain. Unbearable. How could I tell everyone now? I couldn’t. So I didn’t and did my best to hide my emotions even when they were overwhelming me.

We’ve tried lots of things already like adjusting the device, getting scans to ensure it hadn’t moved or became damaged in some way. It’s been about 3 months since the pain came back, and it’s looking increasingly like this is just it. We’re trying not to think too hard about it because I think we both have a gut feeling that there’s nothing left to try… and that’s the toughest pill to swallow. Especially now. He’s back to being unable to walk or stand for longer than a few minutes before doubling over in excruciating pain. Square one is staring us directly in the face, unflinching. Honestly, how do you cope with that?

In the midst of all this understandably stressful, scary stuff, I’ve been dealing with a slew of my own things. My wonderfully unique childhood dog, Olley, passed away just before we set off on our holiday. Now, if you couldn’t tell by now, I’m a terribly emotional person so you can imagine how hard I took this. I still can’t speak about it without tearing up and I’m struggling to type this now so I’ll just say: I miss him terribly and wish I could’ve known that when I saw him last it would genuinely be the last time I ever saw him. Man’s best friend sure isn’t easy to say goodbye to.

It hasn’t all been bad, though.

When my personal life became too overwhelming, I knew it meant I needed to make adjustments elsewhere for my own sanity. I wasn’t happy in my job and I knew I couldn’t handle that sort of distress on top of the mayhem I was facing beyond the office doors. When it became clear that my only option was to leave, I did. A new opportunity came up that I simply couldn’t turn down, and I’m happy to report that, so far, I really quite enjoy it. My new coworkers are friendly and supportive and I’m thrilled to be a part of a team that has the same passion and focus as I do. I’m a much smaller fish in a very large pond now, but I still feel valued and important and it’s already done wonders for my self-esteem. I think it was a change I needed more than I realised. I’m excited for my 2018 career, and so grateful the opportunity arose when it did. I really needed it.

We also bought a house! If that isn’t hardcore adulting, I don’t know what is! Of course, that’s come with its own set of challenges, but c’est la vie, eh? We love its location because it is zen, zen, zen in the middle of the city, which we clearly need buckets of!

I’m also beyond thrilled to report that my grandparents are doing much better – my grandpa is in remission! It’s been a scary year, but we’ve had good news from doctors and renewed optimism. I’ve struggled with being so far away and not being able to help, but we’ve got all fingers and toes crossed that it continues upward. We’re hanging in there.

2017 was absolutely much more difficult than 2016. My strength was tested to its limits. My ability to function without completely breaking down was minimal at best. It’s been lonely and frustrating and severely emotional. At one point, I was apparently so stressed that I experienced extreme bouts of vertigo, migraines and my skin has completely rejected my once-pristine complexion. I had nearly broken myself before the year was over. I’ve recently found coping mechanisms and have a bit better footing, although my poor skin hasn’t yet responded… oh, vanity. Picking my battles, though.

I’ve found it more difficult to speak to my friends about my life as it becomes increasingly complex and depressing. I’ve turned down countless invites because I’ve needed to be home or wanted to be home. The invites have since lessened significantly – understandably. For the vast majority of 2017, I’ve felt very alone and very isolated. Mostly from ‘normalcy’. I’ve often felt on the outside looking in in nearly every scenario. It is difficult dealing with something that literally no one you know understands or can relate to. Harder still to try to explain it all to them in a way that makes sense to them. Nevertheless, I’m grateful for the support we’ve been given so far despite everything. The brief moments I have away from it all, not thinking or worrying or hyper-focusing… I’m grateful for these breaths and the people I’ve spent time with.

Above it all, this year I’ve learned most about resilience. I remember with embarrassing clarity how often I’ve escaped to the bathroom to sob in private over various things this year, but still managed to collect myself enough to walk out with my head held high and get back to business. I’ve been proactive and maybe not unwavering, but I’ve bounced back. I’ve learned to give myself time to grieve. I’ve learned to try to see the good in everything – the happy times, the wonderful memories made. I’ve been brave and faced some of my biggest fears this year. I’ve found control in situations that often feel out of my control. I’ve held on. I’ve found my voice. I’ve made changes. I’ve forgiven.

It’s been an unbelievably tough year. And while I am constantly trying to redirect my anger and disbelief, I’m still growing and I think I’m doing quite well. Considering the circumstances. And for 2018, I resolve to continue being resilient.

To those of you who’ve been there: thank you for being a part of my journey. Despite my perceived isolation, I am so glad I’ve got a support system and people who will listen when I’m ready and able to talk. Nothing could’ve prepared me for what 2017 had in store, but it sure taught me not to take anything for granted. 2018: bring me some blessings. Preferably not in disguise!

When you start to feel like things should have been better this year, remember the mountains and valleys that got you here. They are not accidents. And these moments weren’t in vain. You are not the same. You have grown and you are growing. You are breathing, you are living. You are wrapped in endless, boundless grace, and things will get better. There is more to you than yesterday.

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…

The edge

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The day doctors confirmed my grandfather had cancer, I cried in the bathroom at work, finished off the following hour in the office, then left early, unable to truly focus. I went straight home to buy him tea. A few weeks prior, my mom mentioned my grandpa really enjoyed tea I had given he and my grandmother, which I purchased here in London, but I couldn’t remember what type of tea it was to save my life. So I did what any sensible person would do: I spent $100 on different varieties of tea and shipped it to them. That’s right, my first instinct upon hearing my grandfather’s diagnosis was to send him tea.

Even thinking about it now, a few weeks on, I can’t help but think how strange of a reaction that was. But in my head, it was an action. It was something I could do to help from afar, albeit a very small action with seemingly little impact. All I could think was ‘what will make my grandparents smile during such a traumatic time?’. Hundreds of tea bags would do the trick, I thought. I think it did… but it still doesn’t feel like enough. Which begs the question – what would be enough?

For those of you following the snippets of my life that I serve up via blog post, you’ll know I’ve been dealt a number of awful cards in my time on this earth. Just in the last year alone, I’ve faced a slew of horrific ordeals and hovering unknowns. I thought I was closing the book on the majority of these issues when my husband had life-changing surgery about 8 weeks ago. It’s been a slow recovery, but he’s on the mend and his quality of life has sky-rocketed into positivity. I know now, however, that I was not closing the book, but simply a chapter, as I face another seriously stressful and scary situation happening to yet another person I love.

I’ve been in this situation before: far away from someone I care about dealing with a scary health problem. It doesn’t get any easier. But whether I’m there or here, it still impacts me the same. I’m scared and I want to help, but I’m hyper aware that there really isn’t much I can do. So here I am, continuing on with life as if I don’t have something else heavily weighing down my conscience, feeling helpless and isolated.

I’ve kept this subject quiet for quite some time. My grandfather fell ill a few months ago, and that’s when the subject of cancer came up. But cancer is horrifying. I refused to believe it was even a possibility until I received categoric confirmation. I couldn’t let it impact my work life because my situation with my husband had already interfered heavily. I couldn’t bear having to admit to my superiors or colleagues that, yes, here I was again dealing with yet another medical nightmare. But more importantly, I didn’t want anyone to pity me. I know I don’t give myself much credit, but I know I’m strong. I’ve handled terrible situations with a level of grace I’m still not sure is my own, so surely I could put my brave face back on to get through another workday.

My grandfather is the toughest guy I know. I’ve always said he’s too stubborn to die, and I still very much believe it (hope you’re reading this, Papa!). I’m so glad he’s got my grandmother to help him through this journey, despite the scary health issues she’s enduring herself. I fully believe in the power of love, and how this magic ingredient helps so many of us pull through each and every day. I only wish I could be there, in person, to help them both. They’re such an integral part of my life, and I feel like I’m doing them a disservice being thousands of miles away. But here I am.

I don’t want pity and I don’t particularly want to discuss this subject with anyone because it’s still raw… so why the heck am I writing about it, you ask? Well, it’s simple: I want people to understand that we’re all dealing with things behind closed doors. That not everything is as it appears. I beg you to please be kind to people, always, no matter your own circumstance. I can’t count the number of times I’d return home from a rather rough day at work, shouldering the weight of others’ roles plus the mental anguish I was already juggling, collapse into tears and wonder if maybe had I expressed what was happening in my personal life, I’d earn some compassion from others. But I didn’t want to talk about it. I still don’t want to talk about it. I shouldn’t feel like I have to pour my heart out just so people will be nice to me. I was taught to be kind, so why can’t I be granted the same courtesy?

Look, I’m not here to complain. Life has a tendency of kicking you in the teeth, but you still have to get back up to finish the day. I’m the poster child of this! But I’m also not too proud to admit that I’m tired. I’ve not had time to bounce back from my husband’s ordeal, who still has a number of months of recovery ahead of him. Yet here I am, still trucking along, dealing with every little thing the universe throws my way. Not always in the best way perhaps, but I’m getting through the mess the only way I know how.

I don’t know what the future holds. If I’ve learned anything in the last few years, it’s certainly that life has a way of keeping you on your toes. I like to think I’ve navigated the obstacles well, but it’s hard to say. The only thing I seem to have any control over is how I deal with all of this – and how I choose to allow it to affect my life and the people around me. And most importantly, I’ve learned to keep going. I’ve wanted to throw in the towel so, so many times and just crawl into bed and never leave. But I haven’t. And I haven’t stopped laughing or spending time with friends, I haven’t neglected work or failed to help out my husband. I haven’t given up. I won’t give up. My grandparents haven’t, so I think I’ll follow their lead.

Anyone can slay a dragon. Try waking up every morning and loving the whole world again. That’s what takes a real hero.

The eye of a tornado

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I’ve found myself relating to this excerpt from The Bell Jar by Sylvia Plath lately:

“I felt very still and very empty, the way the eye of a tornado must feel, moving dully along in the middle of the surrounding hullabaloo”.

A few times a day I have to drag myself out of a haze, as if forcing myself to remember that there’s a whole life happening outside my current perspective. It’s hard to give anything else even a smidge of priority because, at this moment in time, it all seems like… well, it all seems like a waste of time. What could possibly matter more than what’s happening right this instant? Why should I care? 

Three weeks ago, my husband elected to trial the spinal cord stimulator, which is the device implanted at the base of his spinal column intended to intercept pain signals from his brain to his leg. We were dancing around the subject for some time, not confident that another surgery was the best route for us. But after having spent time in my hometown in the US and consulting another specialist there, we quickly realised this was our only option. We weren’t going to sit around and wait until it got progressively worse. As horrified as we were, and as unsure that I still was about the whole concept, we went ahead. We knew, logically, there wasn’t another option.

Let’s talk about how that surgery day went for me:

I spent the night before having panic attacks and crying fits, absolutely petrified when faced with the risks and the unknowns, and how we wouldn’t know if this was a good idea until the procedure was done. I don’t like not knowing. When the morning came, we left for the hospital in a fog of exhaustion and apprehension. We got a hospital room to ourselves, which I viewed as a luxury when compared to previous experiences we’ve had with the NHS. His nurse was nice and clearly knowledgeable, and the doctor answered all my inane questions and quashed my initial concerns with facts. Then we waited. My husband fell asleep, while I sat there rocking in my chair, holding in tears and desperately trying to distract myself with books and my phone. When they finally came to take him for the operation, I hugged and kissed him, told him I loved him and that I would see him soon. The minute the door closed, the flood gates and panic were released. I can’t remember the last time I’ve felt that worried or scared. My dear friends consoled me and tried to bring me back to reality as I waited in that room, alone, for four hours. When they finally brought him back to the room, he looked uncomfortable but in good spirits, all things considered. I cried some more, this time happy to have him back, and we waited to be discharged the same day. His whole back was bandaged up and he was in a good amount of pain, but by the time we got home, he said he felt like the device may already be helping. I clung to that positive aspect with all my might.

For two weeks, he tried to live as normal of a life as possible to truly test the device’s power and its effect on his foot pain. We had a few scares – a few days after the initial surgery, we spent 7 hours at the hospital thinking something was wrong. Toward the end of the 2-week trial, he somehow managed to accidentally power the device off, which meant all the foot pain came flooding back full force. Some days were exciting and positive, others were terrifying and hard. The emotional rollercoaster was insane, and I was struggling to keep up with my own well-being.

My days began and ended with my husband. We woke up, I helped him wash, I dressed him, I fed him, I looked after him in nearly every way possible. There are so many limitations with this procedure post-surgery that it’s almost laughable that the doctors advised us to ‘return to normal life’. This is not normal. I can only imagine he feels like he’s lost his personhood entirely. Meanwhile, it burnt me out. I’m still burnt out.

Despite all the chaos, we still went to work. I honestly don’t remember much of the last three weeks, though. I was there… but I wasn’t there. The stress of my personal life and the stress of my work life melded into one and I was just sat in the middle watching it whirl around me. This is my life. I couldn’t believe it was real sometimes. It was all a bit too much.

Well, those three weeks have come and gone and James felt the pain relief was high enough to go ahead with the full implant. So there we went again, back to the same hospital to get all the wires and the battery pack that had all been hanging outside of his body the last few weeks shoved inside and sewn back up. Gross, right? Did I mention that I do not do well with blood and guts and gore and especially hospitals? Adrenalin is a powerful thing folks – it’s kept me from passing out/vomiting this entire time! Anyway, we repeated the same process all over again, but this time I went armed with actual things to do like work, brought my own lunch so I didn’t have to deal with the anxiety of leaving the hospital, brought my own coffee and set up shop at the desk in the hospital room. I can’t say time went by any faster or that I was freaking out any less than the first time, but it helped to have things to do that had deadlines. It forced me to focus on work instead of speculating. It forced me to forget, albeit temporarily, that the last nugget of information the doctor gave us before taking my husband to surgery was that they may have to take the entire device out if there’s any sign of internal infection, let it heal for a month or so, then start all over again from the beginning – but they wouldn’t know that until they opened him up on the table. Gee, thanks! I know to these doctors, surgical procedures and risks are all in a day’s work, but sometimes I wish someone would remind them that patients are still real people who have worries and fears. While facts are important and appreciated, there’s a time and a place to drop those bombs.

Regardless, he went and I waited as impatient as ever. Praying to the god that I don’t actually believe in, but wish I did in moments of distress. This time when he came back, my breath caught in my throat. He looked horrible. He looked like he was in a serious amount of distress, pale and really very unhappy. It scared me. I must’ve asked him a thousand times if he was okay.

We learned later that he had been given ‘quite a great deal of morphine’ this time around, which is likely why he was feeling so awful. But despite this, he was chipper! He excitedly told me he could tell the device was definitely working, how the first thing he asked the nurse was when could he run again? His positivity inspired and shocked me, but still, he was in a noticeably great deal of pain.

We, again, went home the same day. A 90-year-old could’ve lapped us at the speed we were moving, but we eventually made it back and up the stairs to our flat. The pain this time around was horrendous. It makes logical sense – he has a foreign object wedged in his lower back, causing a bump nearly an inch out from the rest of his body. Pain meds have been his crutch and impatience has been his greatest weakness. There’s no bouncing back from this… it’s a gruelling, slow, immensely painful healing process. We’re both freaked out by this unnatural bulge in his back, and struggling to accept that this is ‘normal’ for the foreseeable future. Twenty-somethings faced with a hardcore, fairly unique medical obstacle. Yeah, it hurts. Figuratively and literally. C’est la vie.

But we’re here now. He’s still in pain from the procedure and I still cry every day from the stress and fear of it all. But the device is helping. The device is helping. Sometimes I feel like I need to scream it to myself to remember, but this is why we did it. This is exactly why we thought it was worth the risk. The end game is important. There will be healing. The surgical pain will subside. He will gain his independence back and we’ll have our lives back. This is what we’ve been dreaming of for years. YEARS. This condition marred our entire relationship and for the first time, we see the light at the end of the tunnel. You guys. Do you understand how unbelievable this is? Do you understand how life-changing this whole thing will be? Some days I can. Other days it’s effort just to remember to put the leftovers in the fridge, which I’ve forgotten to do twice in a row in the last week.

Boy, I can’t wait to have balance restored. In the meantime, to those trying to interact with me on a daily basis: I’m sorry. I’m sorry because I’m not ‘all there’ yet. My head and my heart are still wrapped up in this aftermath, if you will. I know the storm will pass and winds will calm, but time is on its own path. So I’ll just sit here in the chaos until then, but I promise I won’t get too comfortable here.

My days still start and end looking after my husband. I’m still exhausted. I’m still burnt out. I’m still questioning if anything else matters other than this. But despite it all, I still get up and go to work. So maybe I’m a bit stronger than I’ve been giving myself credit – despite the alarming volume of tears I’ve shed recently.

Tomorrow will be better.

P.S. Our hospital room had a partial view of the London Eye. Just try and tell me that smidge of London beauty on a monumental day like that wasn’t a metaphor.

All forward motion counts

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On my last day of CBT, I spent the full session sitting in my chair sobbing uncontrollably, muttering ‘I’m sorry’ in between gasps for air, ‘I don’t know why this is happening’.

A few weeks before Christmas, I self-referred to a local mental health clinic in an attempt to gain control over my thoughts and to learn coping strategies when things felt like they were spiralling out of control. It was something I’d always thought I should do, but never felt I was ‘bad enough’ to require outside guidance. I’m fiercely independent, and I always want to be able to take care of myself without anyone’s help or input. But as my husband’s condition was worsening and the future was quickly filling up with more and more unknowns, I realised now was the time to admit that I needed help. I genuinely felt like I couldn’t face whatever came next for his treatment unless I was properly prepared. So I signed up for a 6-week CBT one-to-one course (cognitive behavioural therapy), intended to analyse the way I reacted to situations, then work to implement changes to disrupt the negative pattern I had fallen into. It sounded like the perfect thing for me to do: it would be work, but it would come with noticeable results.

I kept it quiet from most everyone. I didn’t want anyone to know that I was working on myself because I didn’t want to admit that 1) there was anything that needed fixing and 2) that it was affecting anything more than myself. To be completely honest, I was so stressed and so panicked and so overwhelmed that it was affecting a lot in my life. My anxiety had gotten so extreme that I wasn’t leaving the house except to go to work, and even there I wasn’t myself. I needed help, but I didn’t need to broadcast it to everyone. I wasn’t ready for that.

So I went home to America for the holidays and tried my best to relax during my time off knowing that when I returned, it was time to get to work. And I did. Every week, I went in for my appointment and talked about how I react to situations and how they’re affecting me and how I thought I could change that. I’m not a therapist, but CBT itself is pretty straight forward. It’s goal-oriented and something you can track progress on paper. Each session I’d walk in with my homework in hand ready to discuss it, and each week I was transparently told how well I was doing. I felt pretty proud of myself, and received the positive affirmations I needed each week to keep me working toward a better me. I was slowly breaking the pattern that I knew played a major role in my recent demise. I was clawing my way back up to the surface each week, and for the most part, it felt pretty damn productive.

On my last day of therapy, I had recently gotten incredibly stressful news about my husband. He was due to get DRG surgery in the coming months, but we hadn’t yet been given a date for the surgery (a type of spinal cord stimulation targeting your dorsal root ganglion nerve bodies at the base of the spinal cord). We were just anxiously awaiting a phone call from the hospital that could’ve literally come any day, which meant most of our life plans were on hold or tentative until we knew what was going on with his surgery. A very tense way to live your life, let me tell you. Anyway, we got that call, suddenly, when we weren’t expecting it in the slightest. But it wasn’t the call that threw me – it was that the hospital called to ask if he could come in for surgery three days later. It’s one thing to know you’re waiting for life-changing surgery, but it’s something completely different when you’re asked to get it done in mere days! However, I thought I handled that experience with ease: I was calm, strategic and gave my husband logical advice. When we finally determined it wasn’t the right time to drop everything for the surgery and we’d rather wait for a later date in which we could plan properly, I hung up the phone feeling proud of myself for handling it like a mature adult. Pre-therapy Tanya would’ve completely crumbled from the stress of the situation, over the need to give the hospital an answer within the hour. Panic would’ve taken over and I would’ve been crying in the bathroom desperately trying to compose myself before getting back to work. But not this time! This time I handled it like a pro, and although I still felt a little jittery from the whole ordeal, I survived and I was able to get back to work comfortably. Or so I thought.

When I eventually had my final therapy appointment, I walked in prepped and ready to tell my therapist how I dealt with a scary, overwhelming scenario like a boss. A ‘look how much I’ve learned already’ show of achievement. I walked in smiling, sat down and started explaining how the situation came up and how I responded to it, and the minute my therapist asked what I would’ve done if my husband had taken the early surgery date… I burst into tears. And they didn’t stop. The entire session. I kept apologising and muttering that I didn’t know why this was happening and I was fine the whole time until I walked in that door and how it didn’t make sense and that I was sorry, sorry, sorry. She told me it was a completely normal, emotional reaction and it just showed how much I cared about my husband, and how that type of worry is and will still be normal. She explained the stress of his medical situation is unique and how I need to stop viewing my tears as weakness. I don’t remember every detail of that appointment mostly because I was utterly embarrassed and surprised at my own reaction. I mostly remember her telling me I was strong and proactive, but that maybe I needed something a little more than CBT and gently suggested I pursue treatment elsewhere. I know she meant well, and I know she’s probably right – I need treatment catered specifically to me and my situation because it’s too, uh, complex, for generic therapy plans. But I couldn’t help feeling like I had failed therapy. I was doing so, so well only to completely lose it on my last day with an emotional reaction I didn’t even know was in me. I thanked her for everything she had taught me along the way, asked her to send me info for further treatment and took my sobbing self to the bathroom to cry in peace. My husband eventually had to meet me on the walk home since it became evident I wasn’t going to compose myself any time soon.

At the end of all this, we did get an appointment date through for his surgery. It’s in a few weeks time, actually. We were able to go away on holiday beforehand to get some sun and proper relaxation before life as we knew it will change. I haven’t yet signed up for new therapy. I still don’t know if I will, and I imagine it hinges on whether or not this surgery goes well. But for now, I’m applying what I have learned so far: I don’t know what will happen after this surgery. I don’t know if it will be the saving grace we’re after or if it’ll send us back to square one. But I do know that these ‘what ifs’ are not helpful, and we’ll tackle the outcome when that day arrives. And I’m still trying to remind myself that I am strong and despite feeling weak more often than not, I have every right to be proud of how far I’ve come so far. This stuff is absolutely terrifying. I wouldn’t wish any of this on my worst enemy. I know I’m going to be emotional when his surgery date arrives, but I know I’ve got some tools to help myself this time around. And if I find myself falling short – I have options. That, in itself, is empowering. There’s no reason I should ever feel I’m going this alone. And it’s about damn time I realised that.

You’re looking for the explanation, the loophole, the bright twist in the dark tale that reverses your story’s course. But it won’t reverse – for me or for you or for anyone who has ever been wronged, which is everyone. Allow your acceptance of the universality of suffering to be a transformative experience. You do that by simply looking at what pains you squarely in the face and then moving on. You don’t have to move fast or far. You can go just an inch. You can mark your progress breath by breath.

Cheers, 2016!

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So 2016, now’s the time to say our farewells. I like to try and take the time to reflect on the whole year that’s passed before I allow myself to start planning for the arrival of the new year, so here I am – at it again!

This past year has been a rather difficult one, to say the least. I’ve moaned and griped for quite some time now, but I’ll be happy to put that to bed and start fresh… after this last post!

2016 began slow for me. I had just moved to London and was still struggling to find a new job in line with the new career path I was pursuing. I was noticeably despondent – feeling sorry for myself and feeling like I was never going to find my place in my new city. But by March, I had happily accepted a new gig in the travel-writing sphere and threw myself into work full-force. Although I was happy to work, I still found it tough to transition into an atmosphere that was totally new (and vastly unconventional) to jobs I’ve held previously. The environment was bubbly and relaxed, and everyone seemed to be best friends with each other. A huge contrast to the news industry, from my experience. I felt awkward for many, many months, fearful that all the times I turned down tea from my coworkers would make it seem like I was rejecting British culture! But it didn’t take long for me to chill out and find my place in the office, although I’m still partial to coffee over tea. I got a promotion within 6 months on the job, which certainly helped me feel valued. But most importantly, I made friends I hope will last forever. My colleagues may not know this, but they’ve helped London feel like home – something I had been missing the first 6 months post-moving abroad. I can’t imagine working anywhere else. I truly struck it rich.

My new job has also helped me survive my personal life this year. As many know, it’s been a tough year in my marriage. My husband’s nerve condition spread to his hand, and it had been so painful for him that it had an immediate effect on both of our lives. He was hurting, angry and scared, and in turn, I was the same – just in my own way. With the sudden changes in his health, we found we were asking questions we never thought we’d have to ask before: are we running out of time to have kids before his condition is too bad that he can’t help me in raising them? Will he be able to continue working? Can I be the help he needs? Who can help me deal with this? I was working to escape the stress of my personal life. The office became my sanctuary and my breathing space. I found focusing on my work a happy distraction from all the fear and worry swirling around in my head on any given day. My colleagues were supportive and nice and understanding, but also gave me the space I craved and needed at times. They helped give advice and suggestions when I needed them, or offered ideas I wouldn’t have thought of on my own. I don’t think I would’ve dealt with this year’s drama as well as I had if it weren’t for my incredibly supportive colleagues.

I relied heavily on family this year too. Though I’m sure they already know it, I think it’s worth mentioning my gratitude: Thank you to all my family members – kin and non – who’ve been there for us when we’ve needed it most. We’ve got a global support system, and we can’t thank you enough!

The stress of the medical issues in our lives was enough to crumble our marriage. But it didn’t. We got through some incredibly horrendous moments and became even closer and more enamoured with each other at the end of it all. We left London toward the end of December feeling hopeless about finding relief for my husband. Our doctors in the UK led us to believe that my husband didn’t have any other options available to him. That pain relief was impossible, and the best they could do was continue to prescribe drug after drug in an attempt to manage the pain. But we didn’t take this as a final answer – we couldn’t. We made an appointment at the Cleveland Clinic for a second opinion, feeling like there must be some other medical professional in the world who could offer us new information. It would be expensive, but how could we ever put a price tag on quality of life?

Turns out, that one appointment was all it took to regain the hope we had lost throughout 2016. We met doctors who very clearly understood his nerve condition on a level our previous specialists did not. They gave us new ideas to pursue in finding ways to relieve the constant pain he’s in, and even trialled a new medication we had never heard of before. We feel like we can now return to London armed with new knowledge – plus a team of US experts ready and prepared to help us should Europe be unable.

And me? Well, 2016 tried to suck all the hope and happiness from me… and nearly succeeded. It hasn’t been easy to keep my head above water, but despite everything, I’m proud to say it taught me a lot. I’ve gained tools and a support system that I didn’t have before that are helping me be strong and positive and goal-oriented. I feel more prepared than ever as 2017 rounds the bend, and that is a pretty great feeling!

So good-bye, 2016! It’s been a weird and arduous year, but I’m leaving with a new outlook and newfound hope for a successful and positive 2017. The best gift the year could’ve given me.

When you start to feel like things should have been better this year, remember the mountains and valleys that got you here. They are not accidents, and those moments weren’t in vain. You are not the same. You have grown and you are growing. You are breathing, you are living. You are wrapped in endless, boundless grace. And things will get better. There’s more to you than yesterday.