Tag: quality of life

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.

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.

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.