Tag: invisible disease

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.

Life now

13880394_10154406098136350_5826270149240278047_nLet me tell you about chaos.
Explain how it does not tear you apart, but seethes and simmers within, building in strength with each passing day, growing in intensity like water to boil.
And when the heat reaches your skin, all you want is to peel it off and run, frantic, panicked – because you thought that was your only option when you only had seconds to decide.
And oh, how you wish you hadn’t.
Let me tell you about chaos and how it destroys every shred of hope you once held, but selectively.
Bit by bit, they evaporate into thin air and all you have left is the thought that you really needed that.
But too late now.
There is no screaming, there is no sound.
You remember the silence most, as the whole world around you spins wildly out of control.
As your body betrays you and breaks down, slowly, and then suddenly.
You close your eyes to rest, and wake up to do it all over again.
Let me tell you about chaos.

This is now the sixth time I’ve started writing this blog. The last times I gave up after writing a few sentences, unable to put my thoughts into words. Not sure how much information I wanted to put out to the world, or if I was ready to even accept any of it myself. Then one day, as I was struggling to keep myself together, I found I needed to write what my feelings were as they were coming out. And so another of my many poems was borne, and here I am again trying to talk about the chaos that I call this life.

I’m familiar with struggle and I’m friendly with perseverance. I’ve grown used to my pathway being paved with difficulties to overcome, and my track record of success is thankfully greater than my failures. I work hard, I work tirelessly and I hope it pays off in the end. But that’s the thing – I expect there to be an end of some sort. No matter how tough things become, I’m able to keep moving forward because I feel that at some point, the difficult times will pass and I’ll get through it. That’s how we survive, isn’t it? On the faith that those times will pass. We hope to live.

But how do you keep forging ahead when that isn’t a possibility? How do you pick yourself up and keep going when you know, for a fact, that the odds of improvement, of a better life even, aren’t in the cards? Then what?

Most people are aware that my husband is disabled. Most people don’t, however, fully grasp the severity of it. And let me be clear: I do not seek pity. I do not want anyone to feel sorry for me or for my husband, but on some level, I wish they could understand better so they know how to act around us.

His condition is rare. And even as I type that, I want to stress how genuinely rare it is. Only a handful of doctors in the entire world are qualified to properly treat it, and even those doctors all have varying levels of comprehension and understanding. I’ve lost count of the number of occasions where we completely stumped a doctor. Imagine that frustration.

The nervous system is incredibly complex and intricate, so the medical world only understands a small percentage of it with any level of expertise. And CRPS happens to be one of those lovely conditions that manifests differently in people, and is only diagnosed after every other possible medical problem in history is first ruled out. A diagnosis of elimination instantly tells you how little anyone understands it. And the pain my husband experiences because of this disease is intense. It’s akin to the sensation of breaking a bone… many, many times during the day and then never having it heal. One doctor compared it to child birth pain. Now, I’ve never had a kid myself, but I’ve certainly heard plenty about the experience to appreciate the level of strength my husband must have for dealing with constant, chronic pain of this level on a regular, frequent basis.

After many surgical attempts, including killing nerve endings, embedding nerves to trick the brain into thinking it was no longer there, bone surgeries, injections, tests, trials and a million other last-ditch efforts to give him relief, we wound up with one last option left on the table. The treatment is called spinal cord stimulation (SCS). Sounds pretty intense, doesn’t it? Well, that’s because it kind of is. Essentially, it’s one of the only treatments for CRPS sufferers known to improve quality of life, even if some cases turn out to be temporary relief. Much like a pace maker, it’s an implant that goes right into your back with wires connecting to your spinal tissue. The pack sends electrical messages to your brain to dampen pain signals. Neuromodulation manages pain signals, but does not cure the condition. It is not a cure. There is no cure. But if SCS lowers someone’s pain by even 50%, they view that as a success. But with all things related to CRPS, there is no way of knowing if 1) SCS will help someone or 2) how long it could help someone if it proves a success. We thought, however, a 60-70% success rate among other CRPS sufferers was a high enough number for us to give it a go. Even now, we haven’t allowed ourselves to speculate how it would affect us if he doesn’t respond to SCS. We simply can’t consider that at this point.

Since starting the trial programme in which an army of medical professionals work together as a team to determine whether or not my husband is mentally, physically and emotionally stable enough to continue with such a serious procedure, more problems have come to light. Of course, right? Because it’s not enough that he has an incurable disease that will likely only worsen in time. It has to be even more complex.

Although no one seems to understand why exactly, CRPS is known to spread from one limb to another, or all, after time. There’s no rhyme or reason to where it spreads, it just can. My husband has it in his left foot, and in the last month, it’s seemingly spreading to his left hand now. Except! Get this – it appears to be another form of CRPS. DIFFERENT to the type he has already. He’s only had an official diagnosis on his foot for a few years, and to now be starting the process all over again for a different body part is… exhausting, to say the least. And horrifying. It’s still early stages, we think, but we’ve already begun ruling out any and all other possibilities with weekly tests and hospital visits. So the hope of SCS putting an end to the incessant misery his foot was causing was quickly replaced with fear and worry that this new development would not only affect his candidacy for SCS, but also progress to the level of pain he experiences in his foot already. This was our worst case scenario coming to life. Again, you take away the hope of a better life, what does that leave you?

I know he’s struggling, but I can’t speak for him. I’m not him. I don’t feel the same things he feels. But I do my best to show support and strength even though I absolutely do not feel I’m doing it well. I watch him hurt, I watch him panic, I watch him sink deeper into a depression that I’ll never be able to fully understand because whilst I can empathise, I don’t feel what he feels. I never worry about my being able to walk, or whether or not I can pick up a glass of water. But I watch my husband do it every day now. I have to stand by, helpless, watching him hurt and watching him stress about how to go about a “normal” life when he’s nowhere near the level of an able-bodied person. Taking the stairs is a challenge. Today, I watched him get emotional because he couldn’t pick up his burger. And all I can do is remind him that I love him and that we’ll get through this… even when I’m not so sure we can. I worry that I sound selfish when I talk about his condition, but I’m the only person who can talk about how this whole situation affects me. And he’s the only person who can talk about how it affects him. I’m scared. I’m scared for him, I’m scared for me and I’m scared for our future. We still have so many questions that will likely never be answered. Take a moment and imagine how that could possibly feel. Having a doctor tell you, “this likely won’t get better. This will probably spread to other parts of your body. This treatment may not help you.” There are no definites in any of this. And for two people who like to know all the answers, it certainly hasn’t been an easy pill to swallow.

There are moments when I’m so consumed by emotion that I simply cannot function. I get up and walk out of my office several times a day when I feel tears well up. I am constantly bombarded by friends, family and colleagues who genuinely mean well when they ask how things are going, but are actually forcing me to revisit a subject that is physically painful for me to discuss. When I met my husband, he wasn’t disabled yet. He didn’t have CRPS. And since we’ve been together, I’ve been forced to watch it degrade and become worse and worse and not being able to do a damn thing to help. And at this point in life, when we were at the brink of hopefully having relief with SCS, we’ve been ripped back down to earth to face an ugly new reality. And we weren’t ready for that. I’m still not ready for it. But this life doesn’t wait for you to be ready. And I’m angry. Scared. Wishing I could fix everything to give my husband the life, and physically-capable body, I feel he deserves. We’ve been dealt so many awful cards in the four years we’ve been together, that at this point, it all feels like a cruel joke.

I want you to understand that we are suffering. We are mourning the life we had planned for ourselves and trying to accept the one we were given instead. It is not an easy task, especially when it feels like nobody understands. Don’t tell us things will get better. We aren’t foolish enough to cling to such a dangerous hope. Tell us we’re strong. Tell us we’re capable of making the most out of a horrible situation. Tell us we’re handling it well even if you catch us having a breakdown (which we do, frequently). I don’t need you to feel sorry for me, either. Yes, I’m struggling and I’ll never deny that. But as much as I’ve wanted to all throughout this journey, I will not give up. I simply can’t. We are stronger than this pain, and I aim to prove that until my last breath.

“Be kind. For everyone you meet is fighting a battle you know nothing about.”