Tag: medication

We all march on…

img_1876.jpg

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.

Tougher than life

Dream team

Months ago, I wrote a post about my complicated love life. Since the beginning of my relationship, there have been more naysayers and self-proclaimed “realists” than cheerleaders or supporters. Although it’s been hard hearing people doubt the longevity of my relationship with my husband-to-be, I’ve never had any doubts myself. (As they say, when you know, you know!) The biggest hurdle we’ve had to deal with as a couple is remaining a team while separated by 4,000+ miles and that pesky ocean. Long distance relationships are not for the faint of heart. Nevertheless, we’ve made it this far and plan to close the gap as soon as the visa paperwork clears. Whenever that may be…

I have faced many obstacles in my short life. I’ve made plans and sat back and watched them crumble before my eyes. But I believe my perseverance (and possibly stubbornness) keeps me moving forward toward my goals. With that said, these last few months have been some of the hardest I’ve ever faced, and they have certainly tested my strength.

My fiancé, James, recently lost his job that he loved so much, which had been the main reason for our decision for me to move to London to join him. It happened unexpectedly and suddenly, and not only put him face-to-face with unemployment for the first time in his adult life, but it also single-handedly halted the entire visa application process. You see, he sort of needs an income to prove he can sponsor me for the visa. Saying, “hey, we’re married!” isn’t actually enough, apparently. Part of me feels like I shouldn’t blame the company he worked for because outsourcing James’ job seemed to be the best option in their eyes. But at the same time, I feel like the timing and completely out-of-left-field nature of the situation makes me also feel like we were personally, maliciously attacked. Logically, I know it’s “just business,” but this seemingly small incident threw all of our plans back up in the air. Back to square one, we say. There was an end in sight to the long distance as soon as we said our I dos, and then the rug got ripped out from under us. Can you imagine how it feels knowing that after we have our wedding, we still won’t know when we can live with each other or where that will be? That’s not a typical stress in a normal relationship! Most couples can just pick up and move without thinking twice. But we can’t… until we have the paperwork that says we can – legally.

On top of that unpleasant surprise, there’s a larger, more worrisome issue on our hands. James broke his foot when he was in military college years ago. After a misdiagnosis by the UK’s healthcare system, James’ foot condition worsened. He was constantly breaking the same foot or feeling excruciating pain even if the bone wasn’t broken. I’ve watched him suddenly buckle over in severe pain, tears welling up in his eyes, unable to speak for no understandable reason. He has logged more hours at the hospital in the last year than you probably have in your entire life. And I’ve never been able to be there in person for him. Nearly half of our relationship, James has been on crutches or wearing a cast, unable to move around like an average human being. He used to be a marathon runner, and now he has to stop and take breaks when the pain gets to be too intense. Specialists have examined his foot so many times we’ve lost count, and I’m sure all of the area doctors know his case by heart simply due to the amount of times he’s had to call and leave messages asking for a different kind of pain medicine because whatever they gave him this time wasn’t helping. He’s ingested so many terrifyingly strong pain medications and narcotics that I worry about the state of his organs and the tolerance his body has built up. After countless MRIs and X-rays, doctors believe he has Complex Regional Pain Syndrome (CRPS) and Allodynia. He’s had several surgeries, including one a few months ago to kill a nerve in his foot to stop all feeling whatsoever. We pushed for the surgery because he wasn’t responding to pain management medications, and also because I really wanted to dance with my husband at our wedding in February. The surgery worked and he was walking around normally and we allowed ourselves to celebrate and get excited to dance at our wedding…  And then the chronic, crippling pain was back within a month or two and our hearts were broken. That phone call with James was probably the worst, most painful conversation I’ve ever had in my life. The doctor had told James he could run again in as little as three years, and now the boot is back on and the crutches are always at the ready. We thought we saw the light at the end of the tunnel. We were excited! And yet again, we were let down. Now, doctors see that two bones in James’ foot have fused together and need to be surgically separated. Until then, he will repeatedly break his foot because of the added pressure the fused bones place on his foot. However, his hypersensitivity and CRPS make it too risky to pursue this surgery until doctors can figure out a way to manage the pain. And although most Americans don’t understand this because we don’t have healthcare like the UK does, the wait time for James to see someone at the pain management clinic is, AT THE EARLIEST, 3 months from now (thanks, universal healthcare). So not only do I have to helplessly sit here in America while my other half is in agonizing pain every single day (physically and emotionally), I also have to stomach the notion that James may never find relief – or worse – it may worsen or spread to other parts of his body. I do the best that I can to be supportive and positive because scary health situations like this are best combatted by a strong, optimistic team. But it takes nearly all my strength not to break down myself, and I’m not the one dealing with the physical pain. I selfishly had this image of James and I dancing with big goofy grins on our faces to our song in 10 weeks, and now I’m trying to figure out a way to dress up his crutches to match the venue decor.

While there’s nothing we can do at this moment except stay positive and hopeful, it’s still hard to deal with. Even though James no longer holds the job that kept him in London away from me, he still has to stay in London now in order to remain with the doctors who have been working closely with him. Why doesn’t he come to America, you say? It’s been discussed, but American healthcare is astronomically expensive, which is an obstacle we simply can’t get around financially. And even if we could, it takes a minimum of a year for a non-US citizen to have their visa application accepted in order for James to remain here with me.

It has been an incredibly tough year for James and me. We have faced so much adversity, and sometimes it feels like it’ll never end. But I have to keep the faith because James deserves the best in this world, and if I can’t fix these problems, I can at least give him my best.

I chose to write this post because I think it’s important for everyone to remember that we are all fighting our own battles even if others can’t see them. We should not judge or criticize others for things we do not understand, and we should always hope for the best for people no matter what. I know our situation could be much worse, but for now, this feels earth-shattering. So please be kind to one another and help each other out. Even if it’s just listening when someone needs to vent or offering a hug to help someone de-stress – almost any little thing can help. Trust me, I can attest to that! James will be pain-free some day soon and we’ll get to live in the same place because that’s the only future either of us will accept. We’ll get there because we want to. In the meantime, we’ve got the power of positivity on our side and an absolute unwillingness to give up. And one day, at our vow renewal, James and I will dance without reservation!

When the world starts falling apart around you, all you can do is start picking up the pieces and putting them back in an order you can understand. And that’s what we’re trying to do.

To infinity and beyond!