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“Fine, we can go,” I mutter, while trying my hardest not to think of all the ways this can go wrong.
Once we get to the hospital, I’m already exhausted from the effort of showering—my new nemesis—getting dressed, and making it down the stairs to my apartment and into Lee’s car. Honestly, I probably should still be using crutches, or at the very least, a walking stick. But I’m far too fucking stubborn to use those, much preferring to force myself to manage, even if it causes me physical pain.
As soon as we make it inside the hospital, and I realise how far away my appointment is from the front door, I realise I’m fucked. Lee must have seen the expression on my face too, and for just a fraction of a second, he looks over at the wheelchairs lining the wall next to us, but thankfully he thinks better of that.
Instead, he grabs hold of my arm, his elbow crooked through mine, and he forces me to put all my weight onto his side. This new position takes away a lot of the pain in my hip, and although I look like a drunk person being supported out of a nightclub, at least it’s not the wheelchair.
Sitting in the waiting room, I can’t help but jig my knee up and down, anxiety of the situation getting the better of me. I can’t believe I actually miss my dad’s fucked up games of Eye Spy.
So, instead, I tell Lee all about it, and he laughs at my dads antics. “I would love to meet them someday. It doesn’t have to be soon, but eventually,” he exclaims, and I know this is what people in relationships do, but it’s the first time I’ve ever heard him say he wants to meet them. It catches me off-guard a little.
“My family are a little crazy, you know.” I don’t really know what else to say, but it’s true. From what Lee’s told me about his family—which admittedly isn’t a lot—they seem normal. Mine really isn’t.
“It’s a good thing I like my girls a little crazy then,” he jokes before pressing his lips to mine. Thankfully, he pulls away fairly quickly because I was about to deepen the kiss the way I always do when I taste him, completely forgetting that we’re in the middle of a busy hospital waiting room.
When I hear my name being called, I take several deep breaths, trying to gather the courage to even stand up. “Here,” Lee calls for me, so the nurse doesn’t think I’m ignoring her.
Lee takes hold of my hand, laces our fingers together and squeezes tight as he holds his other hand out to help pull me up. “You are stronger than you know,” he tells me, as he helps me to my feet. I can’t help but smile. I love the fact he believes in me so much, even when I’m not quite sure I believe him.
The nurse is waiting for us in her room, and as soon as we enter, she stands to greet us. She’s a small lady, wearing a specialist nurse's uniform. She has a short brown pixie cut, and it frames her face perfectly. She looks to be in her fifties, the lines around her eyes and mouth showing her age a little more than I think she’d like. Her mouth is turned up into a kind smile, not the fake kind I was expecting.
Holding her small hand out towards me, she introduces herself. “Hi, Emmaleigh, my name is Kate and I’m one of the specialist MS nurses that works here in the hospital. I work with another nurse called Lesley, but I’m what we call your ‘appointed named nurse’. Please, have a seat,” she says as she points to two chairs beside her desk. “What would you like me to call you?”
“Emmaleigh or Em is fine. I answer to either,” my words are barely above a whisper, but I do reach out to shake her hand, hoping like hell she can’t see the way my hand is trembling.
She takes her hand back and reaches towards Lee. “And may I ask who you are?”
Lee reaches over and shakes her hand, that sexy as hell bright smile on his face, and I can tell, just for a fraction of a second, that she noticed it too. When he turns on the charm like that, his face looks so beautiful, and it’s hard to miss. “I’m Lee, Emmaleigh’s…”
He trails off, gazing over at me. It’s like he’s looking at me for answers, and that’s when it occurs to me, this will be the first time out of the apartment that we’ve admitted we’re together. And I’m guessing if I use the term boyfriend, it will make it into my hospital records. But if I say friend, it feels like we’re taking a step back. Even though I hate having to make this decision, I’m grateful Lee cares and respects me enough to see this should be my choice. It’s my hospital care, after all.
“He’s my boyfriend,” I say proudly. I’ve fought for a month to get to this stage in our relationship, and now that I can finally call him mine, you can sure as shit bet I’m screaming that from the rooftops. I can’t keep the smile off my face as the word comes out.
Kate obviously sees my smile too, as I see her lip turn upright, almost into a smirk. “Thank you for coming. I always think it’s important that family members come and are part of this journey too. I know this is your first appointment with us, Emmaleigh. I can also see you’ve cancelled it twice since your diagnosis. Do you want to talk to me about why?”
Taking a deep breath, I explain about what the consultant said, and how I don’t feel like I’ve come to terms with things, and I didn’t want to waste anyone’s time. And since I was on a roll confessing things, I told her about being a nurse, and worrying people would judge my knowledge based on that, and I don’t know shit about caring for someone with MS. She listens intently the whole way through, never once looking over at the clock.
I have no idea how long our appointment was scheduled for, but that never seemed to matter to her. She wasn’t distracted looking at my notes, or making her own. She gave me her full attention the whole time, and I couldn’t be happier about that.
“Em, I’m sorry you had that experience. The doctor who gave you your diagnosis is a locum, meaning they’re just covering that clinic for us because our regular doctor was on sick leave. You should never have been told in that way. I mean, the information you were given is accurate, but there was a better way to give that to you. I don’t expect you to come to terms with the condition overnight, but my job is to help you understand it. Today, all I’m going to do is give you a lot—and I mean a lot—of leaflets for you to take home and read at your own leisure. Call it homework, if you will. But next time we meet, we will go over the information, and at that point we will look at how we can help you next. My goals for you right now are: give you a basic understanding of MS and how the symptoms might affect you, dispel any horror stories you may have in your head as they’re most likely untrue, get you stable enough that we can judge which is the best medication for you, and ultimately my goal is to get you back at work. Do you have anything you’d like to add? Any goal you feel I’ve missed?” she asks, and my head feels like it’s swimming.
“You really think I can go back to work?”
Kate nods her head so much it’s almost funny. She looks like one of those solar powered bobble heads, but her smile is genuine. “Emmaleigh, as I said, one of my biggest tasks will be dispelling preconceived thoughts on what MS is. Just because you’ve been diagnosed doesn’t mean your life is over. You don't have to quit your job, or stop doing things you love. You are not all of a sudden going to end up in a wheelchair, unable to care for yourself. Yes, MS is a horrible condition, but there are lots of versions, and you are at the good end right now. My job is to keep your relapses few and far between, and making sure when they do come—because of course they will—we can keep it as minor as possible, with no lasting effects.
“This isn’t a pipe dream. The medication that you will start soon has good research behind it, and it is working for people. I have a patient who was diagnosed ten years ago now, and she is living the best life. She is travelling all over the world, climbing mountains, and jumping out of planes. She doesn’t let having MS hold her back, and that’s my aim for all my patients. Of course, when the relapses come, it’s a hard time, but I will be here when that happens to help you through. For now, I just want you to read as much as you can and come next time with a bunch of questions. I also have some leaflets for you, Lee, and you have the same homework. I’m here to support the family just as much as my patients.”
She hands over the biggest stack of leaflets I’ve ever seen and I wonder how the hell I’m going to get through all this. My brain is still stuck on everything she just said. The idea that my life doesn’t have to change, and that it might not worsen the way I think it will is a light I really need about now.
“Can I just ask something?” Lee asks, as he takes his pile of leaflets out of Kate’s hand. She nods for him to continue. “Is it safe for Em to delay treatment? Isn’t it better to start as soon as we can?”
“That’s a good question, Lee. We actually don’t like to start medication while the patient is still recovering from a relapse. We need them to be completely stable otherwise it’s hard to measure baseline stats that we then compare against. Emmaleigh looks like she’s on the mend, but some of the symptoms she’s still experiencing leads me to think the inflammation hasn’t quite gone down yet. It will probably be another month before we consider treatment,” Kate replies.
“What happens if I have another relapse in that time?” I ask, crossing my fingers underneath the pile of papers in my hand, hoping like hell she can give me a good answer to that.
“The high dose steroids they gave you in the hospital, they’ve reset your immune system, and it takes a while for that to become fully functional again. It’s highly unlikely to have a relapse while recovering. But there is such a thing as a pseudo relapse, that’s where your body forces all your old symptoms back on you, usually during a period of extreme stress or exhaustion. So, if your vision suddenly goes in your right eye, or your right leg becomes weak again, it doesn’t necessarily mean you’re having another relapse, it is more likely you’re tired or stressed. All of the leaflets in your hands will tell you how important it is to get lots of sleep, and take care of yourself mentally.”
“But… erm, aren’t I-I more likely… to have another relapse… when I wake up?” I ask, exhaustion obvious as I stumble over my words. I think I need her to tell me the answer to this, to give me permission to sleep properly because all this lack of sleep is making me feel worse.
