Do I pick out a headstone or sign up for state pogo-stick competition?
May 27, 2018 11:26 AM   Subscribe

Saturday the 19th I made on of those poorly thought out decisions that can either end up with a funny story and a forehead slap or ends up in a funeral or paralyzed for life. Apparently the jury's still out on where this will end, although every day I'm still complaining about my husband's poor housekeeping is a net positive. Complex fractures of vertebrae T6-7 were resolved with a titanium rod and screws inserted from T4 to T9.That's good, right?

I'm having trouble processing this. One minute I'm Lady Luck's new BFF, and I'm one tough old broad. I'm doing my PT, walking, and breathing exercises. In ten weeks I'll be up sweeping my floors and loading the dishwasher properly with the utensils UP, planning a back country camping trip, working on the garden, and riding my new summer equine project.

Later, at night in the dark, I'm shaking in the corner,wondering if between the previous stroke, the current major bruising, paraspinus edema, plural effusions, and continually crumbling osteoporosis, am I just an old woman in denial? Am I refusing to admit that my life is over and I better get used to it?

The neurologist asked if I had any questions. When I asked how soon I could starting riding my horse, he told me that was the most stupid thing he'd ever heard out of the mouth of someone in my position.
posted by BlueHorse to Health & Fitness (14 answers total) 6 users marked this as a favorite
1) Your neurologist doesn't know you, he knows neurology.

2) You know you, and you know what the neurologist has told you, and you can find out other stuff -- but you probably won't become a neurologist.

3) You do, however, potentially have access to other neurologists and medical experts.

4) You need your courage and wit to help you face specifics, find facts and probabilities that will help you make good decisions, and think in clear terms about what you want and what you know about yourself that they don't.

5) "Tough old broad" and "frail old woman" is a horrible false dichotomy. You're you. You're not a sitcom character :) If you think in specifics instead of stereotyping yourself, you will be as in control as you want to be.

6) There are probably a lot of thrilling things you haven't tried yet. They may not look thrilling from the outside, especially if you think of other people in those broad categories you used, but you won't know how you feel doing them until you try them.

7) I'm not going to tell you to stop being afraid. Feel what you feel; denial isn't usually helpful. But please stop judging yourself this way!

8) You sound smart. Use that to do research, make lists, and figure out what is best for you (and your horse). Don't make decisions before you have to. Don't wait too long.
posted by amtho at 11:49 AM on May 27, 2018 [12 favorites]

Also: How dare he talk to you that way. Ugh. He was probably tired/not well trained/trying to make an impression - maybe he was trying to speak boldly to stop you from making what he considered a mistake. But still. You don't deserve that.
posted by amtho at 11:50 AM on May 27, 2018 [27 favorites]

If all the negative - worries, anxieties, concerns - show up literally at night, it's time to find something to distract yourself with at night. Go to sleep earlier, find a better netflix show to watch, call someone who can hold your attention with a good conversation, etc. Speaking for myself, my thoughts are generally much more rational and less fear-based during daylight hours when my energy levels are higher. YMMV, of course!

I can't speak at all to anything related to neurology or anything else along those lines - but, regardless, I'd caution against all-or-nothing, black/white thinking here. You're in the healing process, so need to be careful to follow the instructions given, but once the healing over you'll be able to pick some things back up quickly, others may need modification, and others might be something not worth the risk/benefit to you. Like amtho said, you don't need to decide right away - ease into it. In 10 weeks, see what the landscape looks like and evaluate then.
posted by VioletU at 12:29 PM on May 27, 2018 [2 favorites]

After my SCAD/ heart attack, during the days I would care for my newborn twins and make plans. At night, before bed, I would think all the scary thoughts about life and survival and death and wonder when death would come. Talking to a therapist specialising in PTSD/birth trauma helped me process it and eliminate the pre-sleep breakdown. Therapy focused on PTSD and integrating this event into your self-image might help. It doesn't have to be a long commitment.

The other thing is that you should be kind to yourself while healing. Traumatic injuries take a lot out of you physically and emotionally. Concentrate on getting well.
posted by studioaudience at 1:50 PM on May 27, 2018 [4 favorites]

Shortly after I was diagnosed with cancer, I was telling my therapist about my many worries about the future, and he very simply said, “You don’t know what’s going to happen.” Just that thought has helped me a lot, and I remind myself of it when I’m stressing out about dying. I have no idea what the future holds. I might stay in remission. Doctors might find a cure for my cancer. I really have no idea.

I still have bad nights sometimes. The uncertainty can be terrifying, but I’ve generally gotten better at managing it. If you’re not seeing a therapist, that might help. Having someone who isn’t a close friend or family member to run these worries by is a huge help.
posted by FencingGal at 1:59 PM on May 27, 2018 [3 favorites]

Also, sometimes when I can’t sleep because I’m fretting about the future, I listen to the Urban Dharma podcast. I find the voice of the monk who does it very soothing, and I rarely stay awake through a whole episode. (I also like the content - and he’s funny.) That’s not going to be everyone’s cup of tea, but perhaps something similar would help you.
posted by FencingGal at 3:38 PM on May 27, 2018 [1 favorite]

I’m not sure exactly what your question is. But if it’s about crazy crazy mood swings after surgery and during recovery, you’re far from alone. It’s totally normal and commonplace. Surgery throws your hormones completely out of whack, and your moods fluctuate accordingly. Combined with not knowing exactly how well recovery will go, it’s not surprising that you’re all over the map about it.

For what it’s worth, I felt much the same terror and depression after I had surgery on C5-7 with the titanium and screws. It’s 12 years later and there are zero lingering effects. I can do whatever I want. I was mid-30’s on my surgery date.

The depression and fear went away at about one year out, when most of the serious pain was gone.

Lean on your terrible housekeeper. That’s what family is for!
posted by invincible summer at 3:58 PM on May 27, 2018 [2 favorites]

Hey--major medical stuff is scary, and brings home vulnerability in a way that's different from your (and I do mean your, BH) standard injury. You've taught yourself to be brave in all kinds of horse-related emergencies, but this is...something different, and you're going to have to feel your way through it, one step, one scary thought, one eye-roll at bad housekeeping at a time. And just look at you, making plans for the coming weeks! That doesn't sound like a lay-down-and-die response to me. It does sound like you need to give yourself permission to be a little less of the badass that you are, and concentrate on this moment, on the exercise that will give you tomorrow. Aging can be scary, and, were I a bibliotherapist, I would tell you to go read books and/or essays by older authors, to help you know that it's possible to get perspective on the machine's sometime-clunkiness and on the passage of personal eras. I won't tell you not to be scared. I won't tell you everything's going to be the same. I will appeal to your pragmatism...Maybe you've been with a sick animal, and you've seen the light fail in its eyes, that moment of vitality's end? And you know then that there is no life left. You are not at that point. The life in you--and may there be a lot of it!--may be a bit muted, and you may have to adapt your habits to what your body is newly comfortable with...As for the neurologist, well, he could have been a lot more tactful. Maybe he really does think it's a bad idea for you to be on a horse right this minute, and maybe you'll be inclined to get an all-clear in a bit. In the meantime... Be kind to yourself. Do the PT and breathing exercises religiously. Know that increased fear is a pretty normal response to a big injury, but also that it needn't define you. If you start getting panic attacks or feel depression creeping in, make an appointment with your doc. Read about ass-kicking older women. Keep breathing. Rooting for you, BlueHorse.
posted by MonkeyToes at 5:27 PM on May 27, 2018 [1 favorite]

I ran into a man I know slightly today. He's in his seventies. Last year he spent 10 weeks in the hospital. He had a multitude of ailments and came close to dying. When I saw him today he looked so healthy and vibrant it was difficult to believe that he had been in such bad shape. He's had to make some changes in his life. He can't do all the things he used to do, but he seems to have found others that make him happy. You may not ever be able to do some things you used to be able to do, but you will find new ones. Try to enjoy what you can and don't spend too much energy lamenting what you can't.

And that doctor needs a refresher course in bedside manner, what an ass.
posted by mareli at 5:51 PM on May 27, 2018 [2 favorites]

It's a real shock to the system to realise that you're not invincible. It's frightening to look down the barrel of your own mortality. It makes you reflect over the life you've lived and the life you hope to live.

A few years ago, I had my own poorly thought out decision ending in four fractured vertebrae and a very restrictive and public treatment regime. The worst part about it all was other people's reactions to my condition. I resented being treated like I was fragile when all I wanted to do was prove that I wasn't. I wasn't trying to prove it to them-- I needed to prove it to myself. Because almost dying or almost becoming paraplegic is fucking terrifying!

During the course of my treatment, I befriended someone who was going through something similar-- fractured vertebrae, nerve damage, and all. Since then he's gone from having never climbed a mountain, to climbing half a dozen of them, and culminating recently in an Everest summit.

I haven't climbed any mountains (yet) but there's a lot of things that I have done which I couldn't have done if I was dead. So there is that.

You are the expert in your own recovery and only you know what you're capable of. Obviously now in the midst of it, the neurologist wants you to take it easy for the best chance of recovery. Your family and friends don't want to risk you after almost losing you. Fine, take some time out to take it easy and get better. But your life isn't over. Not by a long shot. You ARE Lady Luck's best friend and a tough old broad. You're still alive and the future is still possible.

Sending good thoughts your way.
posted by roshy at 6:03 AM on May 28, 2018 [1 favorite]

Your neurologist should have said "Ask me that same question again in 6 months or a year. For now, just concentrate on healing"
posted by CathyG at 12:38 PM on May 28, 2018

I recently went through an extended convalescence and recovery from toe injuries AGAIN. You wouldn't think a simple toe injury would be that debilitating, but in the case of this particular syndrome, it is. In this case it turned out to be a solid 8 weeks of non-weight bearing, followed by 2-3 months of slow recovery to get back to even basic functionality (ie, can walk around the yard, can walk a mile), followed by another 4-5 months of continuing recovery and training. And after all that, finally I'm back to maybe 80-90% of where I was a year ago.

So here are a few things I learned from going through that process a few times:

#1. You WILL have mental and psychological side effects--depression, etc. Plan on it, plan for it. Just sign up NOW for counselling, meds, whatever you know helps you in that situation. I swear, they should just sign every single person who has a broken bone, surgery, etc etc etc up for this starting day one. Head it off at the pass right from the start.

#2. Do whatever physical activity you are allowed and maximize it--while simultaneously being careful to not re-injure yourself. Just for example, I usually prefer more exciting and challenging sports, and doing something as simple as walking around the block I would consider extremely boring. But in recovery I found out that hey--going up and down our steps ONCE was a great challenge. Walking three houses down and back was a great challenge. Usually on a Saturday I'd be going on a 60 mile bike ride with friends. Instead I walked down to the end of the block and back, then rested an hour or two, then repeat six times over the course of the day.

Physical activity is the #1 anti-depressant and keeping any sort of physical activity going will help your mental state. Also, resting you will lose overall strength and agility, and ideally you'll want to minimize that and accelerate recovery. (But AGAIN don't over-do and re-injure. Live within your limits--but also do what you can within those limits.)

Ask your physical therapist what you should (and shouldn't) be doing at home, then follow it religiously. But also ask what other cardio, strength, stretching type things you can do that maybe won't specifically benefit or affect your injury but are simply allowable things you can do to keep the rest of you in shape while the injuries heal.

Like, you can't do X, Y, and Z because of your injury. But what CAN you do? Do that, regularly. Maybe it is water aerobics, maybe it is lower leg stretches. Maybe it is slow short walks or arm curls with very light weights. Just for example, here is a whole set of exercises one can do with a disabled foot.

#3. Re-learning how to do all the basic daily activities and regain your previous strength, agility, and endurance is actually quite interesting and fun. Look at this as the same kind of challenge as though you were training to run a marathon, ride a 100 mile bike ride, climb a mountain, compete in an equestrian competition, etc. Once you reach a certain point you start to make quite a bit of progress and it becomes pretty rewarding.

#4. For me, the most difficult points were near the end of the convalescence, when you're starting to feel like you could do far more but are restricted from doing so, and then right after you're allowed to resume 'normal' activity again, when you think "everything should be all back to normal now" but oh, boy--is it not. That is where you need to start planning and executing your 6-24 month gradual recover-to-completely-normal-strength-endurance-and-flexibility plan.

It sounds like you're already doing physical therapy. I would plan to continue that as long as possible and ask them to help you recover not just to basic functionality but to full functionality. Many times the PT cuts off just when you could really benefit the most from it.

#5. Set clear goals for yourself to return to high/normal functioning (ie, riding that horse again), and don't be afraid to articulate them to your doctors and other caregivers, your family, and yourself. But also be realistic. As in, getting back on your horse sometime in the next 6 months to 6 years probably means doing your home physical therapy exercises religiously, right now, day after day. They are boring and they hurt. So you have a big, long-range goal that is maybe years off but you turn that into actually achievable daily tasks that you will do now.

#6. Also it's OK to be realistic in the sense that if you get 2-3 years down the road and realize that riding that horse again just isn't going to happen (perhaps because you're not regaining that level of functionality) or isn't wise (one more similar injury would lead to truly debilitating consequences) it is OK to give it up at that time. But travel that road and make that decision when the time is right. There is no reason to give up too early. Follow through with the needed day-by-day routines and see how things turn out in the end.

#7. Even if you never do regain all of that functionality, guess what--it's still going to be OK. I spent some time in this last convalescence thinking about--what if I never walk again, run again, hike again, ride a bike again. Those are among my favorite things to do. Maybe if I could never do them again, life wouldn't be worth living?

But guess what: I actually know a good number of people who can't do any of those things due to physical limitations and many of them have perfectly happy lives. Even more, plenty of people avoid doing all (or many of) those things by choice and they still have happy lives.

So missing out on those things would be my own first choice in life, but it is quite possible to live within your limitations, whatever those are, and still build a happy and productive life.

#8. Also, I took some solace in the psychological research that shows pretty convincingly that people have a baseline level of happiness and tend to revert to it pretty much no matter what (sample research, happiness set point & resilience summarize @ wikipedia). So marriage, children, unemployment, death of spouse, friends, relatives, injuries, etc etc etc, do impact happiness for a while but there is a pretty strong return to the norm after just a year or so.

Right after injury, surgery, etc., you'll be feeling lower than usual. But have some confidence that you can and will bounce back.
posted by flug at 3:18 PM on May 30, 2018 [1 favorite]

Also, Hippotherapy is a thing. Even high quadriplegics can interact with horses.
posted by Jesse the K at 3:16 PM on May 31, 2018 [1 favorite]

Many thanks to all that commented and shared perspectives. One wise person reminded me via email that that "our 4 a.m. brains are assholes", and we shouldn't listen to assholes.

This came at a time when I was considering major life changes anyway, and that throws more monkey wrenches into the works. Ya'll are right though, one day at a time, and the wheel will continue to turn.
posted by BlueHorse at 12:43 PM on July 5, 2018 [1 favorite]

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