Adjusting to life on the outside

July 1, 2015 7:17 AM

... the hospital. On the 16th I left my house to go to work and got a surprise phone call from my doctor to go to the ER based on some test results. Now that I've been trapped in a tiny room, sleep deprived, monitored, scrutinized and terrified for 2 weeks, how can I adjust to Normal life again?

Details if anyone is interested: I have a very odd kind of Ventricular Tachycardia, in that I can have runs of 250bpm but not lose consciousness. Everyone at the hospital was Very Concerned and interested in me because I'm apparently an anomaly in that I wasn't going into cardiac arrest. But I could. I could at Any Time, was the message I got over and over (and over).

They tried to control it with medication, which didn't work, so they scheduled an ablation, which was aborted when they punctured my left ventricle during mapping, and then an ICU stay, and then a different kind of medication (which is working) and they want to try another ablation in a few months, but it's in a hard spot and may not be successful.

This whole experience has been traumatizing. I didn't feel bad before any of this - I got the holter monitor initially because of dizzy spells, which I tolerated well, they were just disconcerting. Now I'm constantly terrified of my heart stopping, even though the arrhythmia seems to be fairly well controlled with medication. I can still feel small short runs of slower VT (~120 bpm) which everyone feels is manageable but still scares the shit out of me. I also have pericardial inflammation from the drain so my whole chest feels heavy. I'm basically hyperaware of the fact that my heart is beating all the time, which makes me anxious, which makes me even more aware, which is not a thing that people should experience. The medication I'm on has horrible potential side effects. I'm scared of the next procedure - what if something goes wrong again?

The other part is that I came home yesterday to the remnants of a life that I carelessly walked out of two weeks ago and can't even imagine being the person who casually made that loaf of (now moldy) banana bread or left her dress draped over a chair. I can't not mourn for the time that was lost and will be lost until the next procedure. I have to wear a monitor 24/7. They want me to wear a defibrillator vest. This is shallow and stupid but: I just had started dating someone I really like and now I feel broken and monstrous. I'm angry and sad; this isn't fair. I'm young and healthy and this shouldn't have happened to me. There was no reason why any of this should have happened. And then I feel guilty or like a huge whining baby because I know that people have much bigger problems.

I hated being in the hospital, but when I was in the hospital I could be confident that someone was Taking Care of Things. Now I'm alone (not actually alone, I have family with me, but they can't stay forever) with all this fear and emotional trauma and I know I just need to re-acclimate but god I don't know how to do it or how long it will take.

How can I feel normal again?

posted by lilnublet to Health & Fitness (19 answers total)

That sounds incredibly traumatic. Do you have a therapist? It seems like that might be helpful for your very understandable anxiety. Other than that, I think it will take a little time, but you will adjust, because it's human nature. Things will get better. Could you go stay with your family for a while, assuming they are going to their own home soon?
posted by three_red_balloons at 7:28 AM on July 1, 2015 [4 favorites]

I would recommend a therapist. This is too big for anyone to handle alone. A therapist can help with your feelings and help you with strategies to mitigate their results.
posted by Mistress at 7:29 AM on July 1, 2015 [3 favorites]

Time. You'll feel better with time. How much time is impossible to predict. I know that's a shitty answer. It will get better, though. Humans are very resilient and adaptable to change and even with the most unexpected, life changingly terrible news, your brain will adjust to the new normal, probably sooner than you think.
posted by something something at 7:32 AM on July 1, 2015 [4 favorites]

Seconding something something. Time and patience with yourself. Therapy is a good idea to help you sort out your feelings and help you set goals to move forward. But, again, be patient with yourself first and foremost.
posted by dawkins_7 at 7:33 AM on July 1, 2015

Thirding Time. Really some body stuff just takes a lot of time. Perhaps a quiet coffee shop at a calm time of day to re-enter the "real" world.
posted by sammyo at 7:37 AM on July 1, 2015

This kind of happened to me in March. I noticed something a little unusual at 24 weeks pregnant and since my docs was closed I went to the hospital just to be on the safe side- in the end it turned out I was having preterm labor and our baby was just old enough to be considered viable- it was a serious emergency and I was there for 2 weeks knowing the baby might come at anytime and his life was in danger. In the end they were able to stabilize the situation and I went home.

The second I got into my husbands car to go home I started weeping and I cried all day. I was afraid I was traumatized for life!

I made an appointment with my therapist which helped and I felt better a couple weeks later.
So I would do that, have a list of things you're looking forward to, and if you can't shake it then some emdr....
posted by catspajammies at 7:40 AM on July 1, 2015 [3 favorites]

A support group would be good for you. Can your doctor point you towards one? Or the hospital? Or even an on-line one, if that's the best you can find?
posted by The corpse in the library at 7:40 AM on July 1, 2015 [4 favorites]

You've just become someone with a chronic life-threatening illness. That's a huge transition and it takes both time and effort to absorb and figure out how to handle and what that means to you and your life. There isn't a One Right Way to feel about it - some people like to compartmentalize it, others integrate it or make into a journey or battle, etc. I had the talk with doctors about a certain point when they said there's a small but significant chance that you will drop dead in the next year, and we cannot predict when which was a different kind of terrifying from a progressive condition with a sense of certainty. You walk around feeling like a ticking time bomb, looking normal from the outside and not feeling it inside. Things got better with time, but for me it was also planning all the possible outcomes that made me feel more in control.

Therapy at the time would have been a godsend and I regret not seeking professional psychological help from someone who understood chronic illness. The hospital would be probably the best to make a referral for you - maybe a patient support group too?

Other things that helped was being organised about medical notes and getting other things organised so that if I did go to hospital suddenly, I had a bag packed and things planned to take over. I wasn't very good at that for other crummy reasons, but when I did manage to get things sorted (bills paid automatically online, flexible work schedules, a work kit so I could work from a hospital bed or in bed while recovering), it was a lot easier emotionally too.
posted by dorothyisunderwood at 7:42 AM on July 1, 2015 [6 favorites]

Focus on building resiliancy skills. Here is one place to start but look around for resources that speak to your needs:
posted by saucysault at 7:48 AM on July 1, 2015 [1 favorite]

Did you get assigned a social worker through the hospital by any chance, or can you contact one now?

All your reactions are completely reasonable, and there are treatment protocols designed to early-intervene before the six-month waiting period required for a formal diagnosis of PTSD. You totally might regain your equilibrium on your own, but you don't have to slog through it blindly. What you've been through isn't any less traumatic than a violent assault or accident. And there's a lot of grief rolled up in a diagnosis like this.

You deserve help getting through it.
posted by Lyn Never at 8:02 AM on July 1, 2015 [6 favorites]

I recently read the memoir of a women who had an unexpected aneurysm at 28 while running on a treadmill. There were many complications. The book, Stir: My Broken Brain and the Meals that Brought Me Home, details her illness & surgeries as well as her recovery (based heavily on food & cooking if you couldn't tell from the title) and how she reclaimed her life. Maybe it will be helpful to you.
posted by carrioncomfort at 8:02 AM on July 1, 2015

I can understand why you feel angry and sad! You're right, it's not fair. I don't think it's unreasonable that you feel that way. It may sound simplistic, but I would recommend allowing yourself to feel those things -- notice how you feel rather than trying to shut those feelings down. It's certainly good to keep a sense of perspective, as you seem to do, but don't punish yourself for your feelings.

On the same topic, it's not stupid and small to feel some anguish about the person you had just started dating. You don't really go into details, other than your feelings about yourself and your body's takeover of the situation (ie you feel "broken and monstrous"). It may be that the person doesn't or wouldn't feel that way about you, if informed of your situation. We all have a body, after all. So, without knowing the full story, it doesn't seem necessarily like a total loss.
posted by sleevener at 8:12 AM on July 1, 2015

I can relate - it's like you said: a mourning of all that is lost of that gal who made banana bread and had a frock draped over a chair, not a machine strapped to her chest, a seeming huge liability for All Future Love Partners.

How long does it take to mourn the loss of this gal? It takes a ton of time and it never goes away completely because it's scary and shitty, but here is what helped me:

I put the [metaphorical] moldy bread in the bin, and made some new bread. I channeled that love of food into making new recipes of stuff that might help my condition.

I put the [metaphorical] dress away in the cupboard and found some different frocks to wear that accommodated the new me. I love my frocks, and I kept being that gal.

I cried about the terrible things that happened in hospital, about the loss of my agency and the loss of my future me visions. Significantly, career, family-making and many great activities I had enjoyed.

I talked with a therapist, recommended by the hospital, and still do, a decade later. I need to know I can talk without worrying that I am being a self-focussed asshole to my friends/ or the frustration of knowing that they just don't really Get It. She listens, cares, I pay her. We're good.

I put on the shitty fucked up machinery and whined about it to a trusted friend, and not to everyone else.

I found new activities focussed on deep breaths, meditation etc and I am distinctly anti-Woo so it was a bit of a step. Try things like hatha yoga or guided meditation classes. You need these skills when the big hiccupping fear and traumatised self gets out of control and you can't function without feeling terrified.

As it happened I got a dog, but I don't recommend this unless you have a companion to share that load with you at home. My dog gave me a deep sense of non-judgmental joy in the present, she loves me and I love to take her for gentle walks even when I am sad, hurting, traumatised or overwhelmed. It calms me down and keeps me in the present. I mean something to a creature who doesn't know or care about whether I am 'damaged' - but you know, be careful about making that decision. It's just what helped me.

My marriage ended but I found the reserves to date again. I met really lovely people and surprisingly, I learned that everyone has their shit. The shit I have going on, is just a variation on the shit everyone has going on.

I kept dating a lovely new person and found that they were really caring about my situation. It gave them a chance to show their bona fides in their care and love of my actual character; and for me to show mine in my no-bullshit-getting-on-with-it 'tude. [This fella went on to organise a week long stay at Mayo Clinic MN, the world's best - where I am right now, and I'm from Western Australia and had to fly around the world to do it. Amazeballs, right?]

The best advice is to quickly face the fact that self pity is a bit of an addiction, and it gets you nowhere useful. It is absolutely okay to feel self pity. Just keep an observing eye over that feeling and rein it in. Find a mantra. Mine is "I am enough, just as I am" - say it when you feel that the self pity party is going too far.

Look forward as much as you can, plan good things ahead for yourself.

Memail if you like. I feel for you and hope that these difficult first days of getting out of hospital and looking at the debris of the current moment is something you can see as part of a collection of moments you just have to get through moment by moment.
posted by honey-barbara at 9:07 AM on July 1, 2015 [19 favorites]

I have episodes of what I think is supraventricular tachycardia. It's weird seeing "210" on my heart rate monitor, sitting in the locker room and well cooled down after a spin class, but not feeling bad or short of breath ....

The one time I sought a medical opinion about it, I got sucked into the Cardiac Trap for 36 hours, chained to a bed while they watched. Your experience is why I don't say anything more now.

I've also had a medical trauma, an accident where I just ... didn't come home for a month, and when I did, I was Broken. I was scared to come home, honestly, because like you said -- in the hospital, I was under care, and home was unknown and I still needed a lot of care. It helped for my case that I had visiting nurses, and my significant other lived with me, so it was a smoother transition. And I was on morphine, so my senses and thoughts were dulled.

But I hear you, I really do. I still have similar thoughts feelings that pass through even now. The thing that brings me back is: well, the alternative is to be dead. It's a simple thought, but - it's the stark truth. Some things will heal, others will never be the same, but: forward, march, because I am just grateful to not be dead. I GET to come home. I GET to walk, and talk.

This is normal processing, too. A therapist might be a good idea, eventually, but for now, realize that what you're feeling is normal grief for yourself and your innocent life before, and that's ok.
posted by Dashy at 9:23 AM on July 1, 2015 [2 favorites]

Please, please find a therapist who specializes in medical trauma. This is too huge to try and handle on your own. I wish I had gotten professional help for the intense trauma of an emergency surgery twenty years ago, but I assumed that time would take care of it. I'm sure for some people it does. It turned out that the therapy and EMDR I sought out were infinitely more helpful for me than two decades of time, which basically did nothing for me. Again, everyone is different, but this seems like such a colossal issue to handle that you deserve some help.
posted by corey flood at 9:24 AM on July 1, 2015 [2 favorites]

I'd be very upset about having a ventricle punctured; I know several people who've had ablations for SVTs, and it's always described as extremely safe. One person had to have it done twice, as the 1st one wasn't in the best location.

I would look for 2nd opinions. There may be a different cardio guru at a different hospital or a different city. That might help you feel better about your diagnosis. I'd see if the hospital has a medical library and educate myself about the condition. I'd look for smartphone apps to measure heartbeat, and find out of there's any sort of app and wearable that could provide an alert, that's less intrusive than wearing a Holter all the time. Is this something a health/ guide dog could help with? Cause that's scary, and scared is a crummy way to live.

The good thing is that you've had this condition for, probably, years and have survived nicely.

I think your life has changed a lot, and there will be a new normal. Consider gratitude that your condition was found, which will extend your life, albeit changed. Most things that cause major changes in your life also cause massive stress. A therapist is a good idea because you have a lot of adapting to do. I have SVTs. Some of the literature says stress is not an issue for SVTs. Stress is a big issue, during one stressful time, I had SVTs one or more times daily. Anything you can do to manage stress can't hurt. Also, it took years for anyone to tell me that dehydration can cause SVTs, so maybe check that out. My version of SVTs is nowhere as serious as yours, so it may not apply.

I'm so sorry this is happening to you. It's natural to grieve, and grieving typically includes shock, denial, bargaining, anger, sadness, acceptance.
posted by theora55 at 9:49 AM on July 1, 2015

I will Nth the suggestions to seek out a therapist who can help you process and adapt to the world in which you find yourself. Resources on cultivating resiliency may be empowering to you as well.

I'm a Paramedic, and I often treat people with medical histories that include potentially life-threatening conditions. In the short time I spent with patients, I can tell that some have adapted to this reality and are dealing with their conditions in a way I can only describe as "healthy." Many of them gain a sense of mastery over the situation by becoming knowledgeable about their medical issues; they seem like scientists who study themselves and their bodies in an ongoing effort to improve their lives. Many, many use humor, employing it like a sigil to ward off despair or frustration. In short, they employ strategies associated with resilience. Their strategies may not work 100% of the time, but for these patients, they serve as handholds for pulling themselves out of darkness when most people would react only with fear and helplessness.

I hope this helps just a little.
posted by itstheclamsname at 9:55 AM on July 1, 2015 [4 favorites]

I really second (third?) the support group idea. Therapists can be a huge help, and I hope you find a good one. But with therapists, you never know if they've ever actually gone through this themselves or not. And that makes a big difference. Plus, right now you will probably feel distant from your friends, which is natural. In time you will mend the suture between your lives. But right now is the time to keep surviving however you can. Also, people who haven't been there, even the most well-meaning people, are going to mess up and say things that sound horrible. In a support group, those sorts of things are less likely to happen.

Everybody says "be gentle with yourself," but it's not often that we hear what that means. Part of what it means for me is totally avoiding situations that could be just fine but also might b upsetting or at the very least disappointing or draining. And right now I don't have that stuff to give. And I don't think that makes me a selfish asshole, just like you wouldn't be one if you declined invitations or didn't feel up to talking to certain people.

And really don't force your old life upon yourself. After trauma, I've really enjoyed things that feel totally foreign to my existence. Like watch boxing matches on tv. The estrangement can be comforting. Let yourself do that if you need to, or let yourself listen to albums you loved in high school if familiarity would soothe you.

Take care.
posted by mermaidcafe at 10:54 AM on July 1, 2015 [1 favorite]

Gonna join the chorus here and sing the praises of time and support groups. Therapy too if that's your thing. But I've found that being with people who've gone through the same or similar things really helps. You do need time to mourn the loss of the who you were pre-hospital, and accept that you're still that same woman, just with this new thing in her life to deal with. It takes time, and it's a lot to deal with on your own. Support groups are amazing. Find one.

Also, hobbies. There's a book called Crochet Saved My Life that's insightful about that. I'm not suggesting you take up crochet, but maybe reading it might help?
posted by patheral at 12:24 PM on July 1, 2015