It probably goes without saying that contracting viral myocarditis, pericarditis and pneumonia this month is the sickest I have ever been. I went to the emergency room on New Years’ Day thinking I was going to be prescribed more antibiotics for the pneumonia that had been diagnosed in December and sent on my merry way, and ended up being hospitalized for several days and being diagnosed with what I will call pneumyopericarditisonia after rounds and rounds of blood tests, chest x-rays, ultrasounds, ECGs and echocardiograms. I was pumped full of drugs, hooked up to an oxygen machine and plugged in to heart monitors. I was told that I had congestive heart failure and that my heart function had been reduced to 24%. During my stay I was woken several times by nurses when my heart monitor caught cardiac events occurring while I slept.
My cardiologist told me that there are generally three outcomes for this illness: (1) I die or get a heart transplant; (2) I recover some of my heart function and possibly have a defibrillator device installed in my heart to act as a first line of defense if I experience another cardiac event; or (3) I make a full recovery. While my medical team has every reason to believe that I am a lucky #3 and that I will be fine, it is going to take a lot of time and work for that to be the case.
I don’t know that I have really processed how serious this has been/is. During all this time, I have continued posting on social media, posting cheery hospital updates on Instagram, tweeting as if nothing was going on, and texting my friends as I normally would. As a result, I’m not sure how much those people not in my very inner circle understand about what’s going on with me.
This Monday, I will have been off work for a month and I am in the process of arranging a longer term medical leave in order to continue to recuperate – my doctor thinks it might be the summer before I am OK. I continue to have chest pain every day. I am fatigued and dizzy, sometimes from the condition itself and sometimes due to the many medications I am taking to repair my heart. I can basically do *one* task a day by myself, whether that be running a quick errand, sitting in my living room to have a visit with a friend, or paying my bills. My brain feels fuzzy and it is hard to do anything intellectually taxing. I will have to limit my sodium intake to no more than 2 grams of sodium per day for the rest of my life, and right now I am also restricted to 1.5 litres of fluid intake a day. At the moment I have to monitor and note down my blood pressure every hour, as it is sometimes dipping dangerously low due to my medications. I now have a blue and white disability permit for my vehicle because I can’t necessarily walk from my car into the grocery store, for example. My days are mostly taken up with naps, forcing myself to eat, going to doctors’ appointments or calling the cardiac rehab program to which I have been referred to inquire as to when I will make it off the wait list.
I am very (very) lucky to have very supportive family and friends around me. My cousin/BFF was the first person to show up at the ER, to move my car, go to my house to feed my cat, pack an overnight bag for me, and (probably most crucially), to counsel my parents, when they arrived, to stay calm because I was where I need to be and I would be FINE. Two different sets of aunts and uncles popped in during my first days in the hospital, and agreed to chauffeur my parents, who live in Victoria, to and from the ferries several times over the coming days, and made sure they ate. Friends visited in the hospital, sent flowers, and arranged meals to be delivered once I was home. They have dropped off books, jigsaw puzzles and colouring books; anything they could think of to keep me quietly entertained. Friends and family have texted to check in and to recommend movies and books for me to watch. Others have come just to sit quietly with me and have a cup of tea. I am so blown away and grateful for the support I have been shown over the past month, not to mention grateful for my Mom and Dad who have taken such good care of me and basically dropped their own lives to come support me. To say I am grateful for my parents, family and friends is a woeful understatement.
This week I had my first real meltdown over what has happened. I mean, I had cried the day the doctor in the hospital said the scary “24%” number, but not nearly as long or as hard as I would have expected. And since then, I haven’t really shown much emotion about it. Maybe because I was too tired? Maybe because I’m in shock? I’ve had no problem telling folks who wanted to know the full nitty gritty details of my prognosis without getting upset. I have been able to sleep fairly well. When my GP noted in a follow up visit that she was available for mental health support should I need it, I was a bit mystified. Why would I need mental health support?!
My parents stayed with me in shifts for the first 10 days or so after I was released from the hospital. They made meals, ran errands and forced me to rest. We all felt confident that I could be on my own after that, and due to impending Snowmageddon 2020 hitting the West Coast, they returned to the Island. Since then I have made a real effort to take care of myself and to live as I always have, that is to say, independently and perhaps more solitarily than most (that’s the secret introvert in me). I haven’t felt frustrated that I have had to take things slow. Friends have still come by for visits and have checked in by calling or texting. I haven’t felt alone.
That changed two nights ago, as I (very slowly) walked my garbage and recycling down to the dumpster before a friend arrived who had offered to make me dinner. I dropped the recycling twice along the way and the second time, I burst into tears, on my knees in my garage picking up tin cans, feeling dizzy and nauseous. I FaceTimed my parents bawling, and was still bawling when my friend arrived, but I found it very hard to articulate what was wrong. My friend took very good care of me that night, helping me make a list of things I was worried about and also making me laugh by talking about things totally not related to me or my illness, feeding me dinner and holding an impromptu book club discussion with me. My mom arrived yesterday to spend the night and give me cuddles and let me cry, because that was what I told her I needed (being my mother she also cleaned out Currie’s litter box, cleaned the bathroom floors, changed my sheets and did my laundry, made spreadsheets for my blood pressure readings and organized my pills, because she just can’t help herself).
Now that I’ve had a few days to think about it, I think I know why I got so upset.
I’ve never been sick this long (thank God). I’ve never had the type of illness that takes months and months to get over. Nor have I really explained, other than to family and close friends, that this is an illness that takes months and months to get over. And it feels like, now that I’ve been home for several weeks, I’m expected to be “better” – by myself, family and friends – and I’m just not. I’ve had so many people text saying “glad you’re feeling better!” and I am mystified as to why they think I am feeling better. Or, they’ll say “Are you feeling any better?” And I have to say I am not, which makes us both feel uncomfortable. I feel frustrated that I’m not better, and I also feel panicked that it feels like people expect me to be OK now when I’m not.
As time has gone on, the visits and offers of assistance have also slowed down, because I think people assume I’m OK or that I’m “better” because I keep up that appearance on social media or because they genuinely want to believe I am better. I’ve had more than one person (like, many) ask me for favours in the past few weeks. I’ve had folks invite me to events, and being the A-type people pleaser that I am, I’ve felt the weight of their expectations in terms of attending and been stressed when I’ve had to say no and they’ve been disappointed or surprised. I’ve had people make assumptions that I am back at work and they have acted surprised when I have told them I am not, which makes me feel awkward. My usual volunteer commitments also continue as if nothing has happened and I feel like I have to repeatedly say that no, I will not attend, or that I can’t do that thing, which again, makes me feel stressed and like I am disappointing people. I feel frustrated that routine tasks like taking out the recycling are difficult, and feel angry and upset that I am even expected to do these mundane household chores like everything is OK when it really isn’t OK. It’s like life is returning to normal around me and I am expected to be normal, too.
Please don’t misunderstand – I am not in any way angry or upset at anyone who has asked something of me, invited me somewhere, or expected something from me this month, or has said that they’re glad I’m better. I’m super grateful to have caring and considerate people in my life and I do not take it for granted. First of all, no one has asked anything of me that I would not normally say an enthusiastic yes to, in a pre-pneumyopericarditisonia world. Second of all, they’re saying they’re glad I’m better because they care about me and genuinely want me to be better. I completely understand this. I am just not in a place to help my friends at the moment as they would like to be helped and as I would like to help them, which makes me feel awful, and I also feel like the most negative person in the world when someone asks how I’m doing and I say “shitty.”
Having thought on this now awhile, and to hopefully avoid any future meltdowns, I have compiled a list of the top things not to say to me, as a sick person, with suggested alternatives if you don’t know what to say or how to support me, which is also sometimes the case. All of these things have actually been said to me over the past month, multiple times, which is why they are on the list.
1. “Glad you’re feeling better!” Unless I have actually told you I am feeling better, please don’t say this. It makes me feel like I am not meeting your expectations or that I am a super rude person and Debbie Downer if I correct you.
2. “Are you feeling better?” Yes, this is more open-ended and doesn’t make assumptions that I am feeling better, but it also still makes me feel awful when I say, “uh, not really.” Or “I’m not going to be better for like, a year.” That makes both of us feel awkward. Superior alternatives to both “better” questions: “How are you feeling today?” “How is your day going?” “I was wondering how things are going with you?” “How’s your recovery going?”
3. “I guess this was a big wakeup call.” Wakeup call to what, exactly? I have been told by all my doctors (and they also, crucially, said this to my parents), that what I have contracted is not lifestyle related. There is nothing I could have done to prevent this. So when you say something like this, I feel judged, for a variety of reasons. Are you saying this because I’m overweight and you assume that means I was unhealthy and brought this on myself? Are you saying this because I’m chronically busy and lead a very fast paced life? I’ll assume the best of intentions here, that you just mean that you hope I now take extra-good care of myself, but some alternatives could include, “I really support you in making yourself your number one priority” or “please take good care of yourself, I hate to see you like this.”
4. “Well, you seem like your old self.” That’s right, I’m still being funny on Twitter or have a smile on my face and my hair combed when you come to visit. I’m no longer breathing out of a tube. But it takes enormous effort to seem like “me” and I probably collapsed on my bed right after you left. I stay peppy for most visitors except my inner circle. When you say something like this it makes me feel like I have to keep up the façade when really I may need permission to be a mess. Totally fine alternatives? “You seem better than the last time I saw you, but how are you really doing?” or “I’m glad to see you with a smile on your face.” Also totally acceptable: compliments on my invalid fashion choices. “Love the slipper socks.” “You make leggings look like couture!”
5. “Please let me know if there’s anything I can do.” OK, thanks. I 100% won’t. It’s hard for me, and a lot of people, to ask for help. It makes me feel vulnerable and also like a spoiled brat. So when you say this, the only person you make feel better is you. If you really want to do something, offer specific things you’d like to do to help, and let me say yes or no. Here are some things that would be very very appreciated:
- Do a run to the grocery store with/for me (I’ll give you my credit card!)
- Come over for dinner – but cook/bring dinner (and do the dishes, heh heh)
- Tell me a time you’d like to visit, and then actually visit at that time
- Sit and do a jigsaw puzzle with me
- Take my garbage and recycling out
- Drive me to one of my appointments
- Plunk yourself on my couch and watch Netflix with me
- Pick up cat food and cat litter for Currie (I’ll fund this excursion)
- Send me a book (electronic or paper)
- Order Skip the Dishes and send it to my house
- Offer to help me change my sheets on my bed
- Give me a home manicure
- Ask if I need a hug
- Send me a stupid postcard in the mail
- Bring over a board game and play it with me
Anything anyone does to show me they care is very (very) much appreciated by me, no matter how it’s communicated and I hope, if you have said any of the no-no things to me, that you know that I am still so very grateful and appreciative that you tried and I am by no means trying to make you feel bad. I just hope that some of these suggestions will take the pressure off me having to ask for help or answer the question “what can I do to help,” and give you a chance to offer the assistance that you clearly want to provide (bless you). And please remember, I still want to hear about your life and support you as much as I can in this time. It’s totally OK to come and chatter to me about a boy you like, a class you’re taking, that asshole at work, you name it. Send me funny memes or links to things you read on the internet that you love or that made your blood boil, so we can talk about them. Keeping me in the loop also makes me feel less alone and is just as important a way to support me as offering to do a chore for me.
I have no idea whether this list would be useful for other sick people and their support circles, and I don’t want to speak for other people, but I know that avoiding the idea of “better”, or perhaps trying out some of my suggestions, would be a huge support to this particular sick person as I nurse this broken heart of mine. I can tell you that, broken or not, my heart is full from the love and support that I’ve been shown this month and I hope you all know that I will always be there for you in your dark times, too.