Tag: drg

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.

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.