The difference between being healthy and being chronically ill

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what does a rheumatoid arthritis flare feel like
Image source: http://www.anesthesia.org/images/pain3.jpg

Choice.

That’s it.  Choice.  The ability to choose what you’re going to do today.  What you’re going to work on, what you’re going to wear, where you’re going to go, who you’re going to spend time with, even what you’re going to eat.

The most basic, and simplest of choices.

When you’re healthy you have all those choices.  When you’re ill, you don’t.  Not even the one about what you’re going to eat.  Because maybe you have multiple food allergies, so you have to check every label, and you have to cook everything from scratch, and your jaw is flaring so it needs to be soft food as well…and that’s all just too hard.  Skip the food. No choice.

Sure, you have to work.  Well, most healthy people do.  What a drag, right?  It would be much more fun to stay at home every day like a sick person.  But even if you take those eight hours of a work day away, those same eight hours of work that give you a lifestyle that you can enjoy, the lifestyle that gives you financial choice (another choice the ill and disabled don’t have), even if you take those eight hours away, you still have another waking eight hours in every day to choose what to do with.  And then another eight hours to sleep.

Ahhhh sleep.  Also, not a choice when you’re sick.  Sleep is a privilege. A blessed relief.  Far from a given.  The only choice when it comes to sleep is whether you’ll risk another sedative, or pain killer or both.  How much do you want that sleep?  How much will you risk for it?  When you’re sick, you don’t just decide you’re tired now, and you’ll go to sleep.  You’re tired all the time, but that doesn’t guarantee sleep.

People who are chronically ill don’t have any choice.  Every day is dictated by pain levels, fatigue levels, nausea levels, dizziness, brain fog.  My body tells me it needs to lie down every day.  But I don’t want to do that.  That’s not a life I want to live, lying on a couch all day.  Yet I spend the biggest part of most days doing exactly that. I don’t have a choice.  But I do as much as I can, even if it’s just one hour, and I have to be determined and strong and accept the extra pain being active causes…or have no life.  Because lying on the couch all day is just an existence.  A very lonely one.

The only choice I get is whether to take an hour and physically push my body to achieve something…an exercise class, planting some shrubs, vacuuming or doing laundry…something, anything…or to do nothing and have a little less physical pain, but no life.  I choose that hour when I can, because I’ve always been a physical person.  And I know that after that hour I’ll need to rest for several hours.  And that’s it. That hour. That’s my whole life right now.

Today I have no choice at all, because yesterday I messed up my lower back.  Today I have to lie down, flat on my back, and I have to try not be angry about it.  But I am angry about it, because nothing I do stops the pain. Everything I do causes more pain.  My back is just the worst of it. I’ve messed up my neck as well.  Attacking hard ground with a pick-axe will do that I guess.  So now, consequences.  Because I tried to do a hard thing.  I tried to push myself physically for a few days in a row.

Lying down doesn’t make it better.  It’s just that walking around makes it worse.  And I’m not able to drive a car, because I don’t have the reaction times in my legs.  The nerves in my spine are messed up, and sometimes my legs go numb, and sometimes I can’t move them the way I want to.  Certainly not fast enough if I needed to brake suddenly.

I do know when I am safe to drive and when I am not.  Today I am not.  And I can’t walk either.  And I don’t have a powerchair that can do outdoor terrain.

So I don’t get to go anywhere.  I don’t get to do anything.  I don’t get those choices.

I am stuck here, lying flat on my back, with a message from a friend saying ‘You can still choose to be happy’.

Yeah. True. But now’s not the time for a pep talk.  And ofcourse that statement is true to a point, but it is also incredibly insensitive and facile.

Because it implies that I am just not trying hard enough to be happy.  It ignores the pain that my own actions have caused me, as an inevitable consequence of trying to be happy.  It removes any credit for my determination or strength, or any empathy for the price I pay, the pain I’m feeling.

It’s cold, barren advice, when what I need is support.  It’s a cliché.  It’s generic.  It’s simplistic.

And it completely misses the point.

Still, there is one thing I can do. I can take another oxycodone, double dose, and it will turn down the volume of the pain, that quite frankly I can’t deal with today.  I still won’t be able to function because I’ll be too doped, but I will be able to do more than just lie here and cry.   But I still won’t feel healthy.  And I still won’t have a choice.

15 COMMENTS

  1. I feel nearly the same. I love working and I hate pills so instead of doing bothI get to chose and since my doctor insists on pills (and the pills prevent death), I chose them and that destroys my ability to work. Confused? Yeah me as well.

    • No, unfortunately I understand, Rick. Its a choice that’s no choice at all. You need the pills to live. And its really hard to hold down a job when you’re dead! You do a lot of good work for the RA and Diabetes communities. It probably doesn’t help your bank balance, but it does help a lot of people Xx

  2. Hi, although I am not as bad as you I understand everything you say. I have to work to earn money to pay the bills but never have the energy for anything else. So that is all I do. Hope you feel better soon.

    • I wish you same Julia. I hope there is a medication or treatment that can give you more of a life. Paying bills and recovering is not much of a life. I’m sorry you’re in this situation.

  3. First, welcome back. I’m glad you are at least well enough to tolerate the computer, screen, typing, etc. That really is an accomplishment. You were missed.

    I visit your blog because hearing these things in someone else’s words makes me feel less isolated in my illness. So bad as it is, and much as I wish it would just lift off of you and leave you whole, you make the frightening island I’m trapped on feel a little bit bigger and brighter. Thank you.

    I remind myself daily that there is a reason I’m living with this and not dead already. There are people in my life – in my case, my partner and two kids – whose lives would be devastated if I were gone. I don’t put up with all of this because I have to. Technically, I don’t have to. The pain, weird illnesses, medications and side-effects. The eternal exhaustion. The feeling that if I have to see one more doctor or take one more pill, I’ll just scream or throw up or both. I make the choice to put up with it for their sake. Everything after that isn’t a choice, you are right. But step back even further, and ultimately we choose to confront it, fight it, live with it, and that leaves me feeling some small measure of control.

    Desperate and isolated and paid filled and inconsolable as our days may be, we are fighting through this because even this sick, we bring good into this world, on our own and through the people who love us and need us to be here, fighting. Hang in there. Get in touch if you need an ear.

    • Keep fighting Raenne, you are loved and needed. I’m here for my kids, and that’s it, I understand. I think a lot about giving up lately. But I can’t. But it is getting too hard.

      • Thank you for your kind thoughts. When you just want to give up – and I get there, I definitely get there – I’ve learned to give myself a day to just hate the world, cry, a mini-give-up if you will. It sounds negative, but constantly holding out against the sickness, pain, meds, new diagnosis, etc, is just exhausting. Eventually, you need to take a break from being brave and strong and from hiding it. So just stop. You can do all that brave stuff again tomorrow.

        • That isn’t negative Raenne. It’s wise advice. A mini give-up is a survival mechanism, and I’m giving myself a break. Thanks Xx

  4. Has your rheumy come up with a “plan” yet?? Did they get back to you yet? I hope so. I just don’t see the need to make you suffer just to figure out what they need to do for you. My heart breaks for you. Happiness is a choice (most days), however!! Like I told my GP as we were discussing mortality rates for RA-Lung and he whipped out a verbal pep-quote “but you’ve got time, you’re in pretty good shape”…..”yeah, but its hard to focus on “pretty good shape” when every breath feels like a knife in the back, I’ve been sick continuously for 4 months, and I feel so bad that the thought that I may live a few more years with this monster…..just doesn’t make me feel any better, but nice try.”

    • The doctors just don’t understand that living like this is pure torture. The only plan for me is to get off prednisone, which now seems impossible. I have hit the wall. Can’t even stand up, and I’ll spare you the rest of the details. Pure. Torture. how much do they expect us to take? I’m so sorry, RA lung is serious, and scary and a pep talk? really? Like that’s going to help 🙁

      • I’ve been shocked, with a scary pregnancy and then RA/AS, with how quickly we can hit the end of what doctors know. They don’t like the experience, I had a doctor ditch me because he felt insecure/incompetent because he couldn’t help me. I had a pain doctor tell me “What does it matter if you wait another week for pain medication? You have chronic pain.” I have acute chronic – so though it’s constant, it’s of the quality and intensity of acute pain. Quite literally torture to live in my own skin. WTF was wrong with this guy?

        I try to make up the difference by learning as much as I can, and taking care of myself sometimes despite the docs. You might consider a pain clinic. They do use opiods, but you do not have to use opiods. I’ve had them offer creams that were NOT opiod, but that had diclofenac and other such meds and could be applied directly. That doesn’t help with the internal issues, but my point is that there might be help in other, odd places.

        • I’ve been to three pain clinics. One just gave me more opioids. The next saw me as a cash cow, and charged a fortune for a simple cortisone injection (three times what i pay at the radiology practice) and the third had ideas, but none of them were feasable (spinal implant, rheumy said no, because, once implanted, I wouldn’t be able to have any more MRIs on my spine.). Then he wanted to give me a radiofrequency ablation, but he would only do one joint at a time. At an out of pocked cost of $600 each time. I need four done. And I can’t afford that. Pain docs, in my experience, are docs that are the most ‘in it for the money’ of all the specialties I’ve seen. Sorry to be cynical. And I totally agree with you about doctors when they come to the end of their knowledge. They tend to blame the patient, and try to get rid of you. Very compassionate! It’s not quite like it is on TV where they just LOVE a medical mystery…

          • That sucks! I never realized how lucky I was with my pain doc – he did a double rhyzotomy in one session (at a $ loss) to avoid me having to go under twice. I’ve had a lot of bad experiences with other docs, though, and don’t for a minute doubt your issues with so many of them. Good help is hard to find – doctors that THINK, really try to problem solve? Unicorns.

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