Jump to content

Icy's Crappy Health Updates


Recommended Posts

You probably know that I've not been in great health since December - after spending five weeks bedridden with severe back and leg pain, I had to wait a month and a half to see a spine specialist, another three weeks to get an MRI, and now have to wait yet another three weeks before I can see my new spine surgeon, and then God only knows when the surgery will be scheduled. 

I've now been in severe pain daily for three full months. I'm predicting it will be 4 1/2 months before I finally get treated. My doctor gave me six days worth of Prednisone to get me through three weeks of waiting for the surgeon. How helpful.

I am so fucking sick of waiting. I can't do anything, I'm in too much pain. I'm sick of TV and movies, I'm sick of the internet, and I'm just too tired to do anything else. I'm starting to get depressed again right through my daily doses of Cymbalta and Abilify.

So. Any tips you may have for keeping oneself occupied when you're incapacitated and your whole life is a countdown that just keeps resetting itself over and over and you never reach the end would be appreciated.

Link to post
Share on other sites
  • Iceheart changed the title to How do I keep my patience and stay occupied?
  • Replies 95
  • Created
  • Last Reply

Top Posters In This Topic

Top Posters In This Topic

Popular Posts

I’m hoooome! My one cat is so mad at me for leaving her and coming back with a walker and unable to hold her on my boobs.

Okay! Progress is made! I have a double laminectomy on the calendar for June 18. Turns out that *cough* age related degeneration was actually another severely herniated disc, so both thoracic and lumb

Better news today from spine doctor #1! Since I respond well to steroids, he's going to try epidural steroid injections. And I get to have the first one on Monday. If this works, I'll be able to

Posted Images

That all sounds awful! I hope things improve for you in the near future!

 

I have no idea if the following will be of any help to you but here goes nothing :

 

1. Sometimes, to fill time, I will play casual games. Things like Among Us, 2048, Settlers of Catan, tower defense games like Kingdom Rush, really simple easy familiar things to do. Most often I'll listen to something or other while playing them, podcasts, that sort of thing. Often I'll, wait, I think what I'm about to type could count as its own separate thing maybe.

 

2. YouTube! I am currently watching a three hour essay / review of DOOM. I kind of just watch it in increments whenever I feel like it. The sensation of watching the YouTube, the people who do YouTube for you, does not quite feel to me like watching a documentary or whatever. It doesn't feel to me like the rest of the Internet, neither, even though it is obviously on the Internet itself. Something else is going on there. Sometimes when I don't want to watch a television or a movie it is a YouTube that can hold my interest. Sometimes my boredom w/the Internet does not extend to YouTube, despite the obvious contradiction in terms, yes, I know.

 

3. Books! A 'friend' of mine in Russia has a surprisingly large collection of books that he will occasionally lend to me. I am routinely surprised at the breadth and depth of his book collection. Books that I have idly wanted to read for years and years but I have never been able to get my hands on are instantaneously available to me thanks to this Russian 'friend'. I don't even have to actually read the books in order to feel sort of good for now quote unquote having them, y'know? Sometimes I don't even bother to 'borrow' the books; just looking through the collection of available titles brings me some kind of comfort. It's like browsing in the world's largest bookstore or quietest library. You can Google around and find the contact information for this Russian 'friend' or I can even send you a link.

 

4. It sounds like your larger problems may be beyond the help of any suggestion from online acquaintances and, assuming it's practically available, I'd encourage you to seek further professional or personal assistance. But if that's too much, or unneeded, or just inappropriate to your situation, or whatever, well, speaking from personal experience I have found the following books mildly-to-moderately helpful : Feeling Good and When Panic Attacks by David D. Burns, Right Concentration : A Practical Guide to the Jhānas by Leigh Brasington, The Science of Enlightenment : How Meditation Works by Shinzen Young, Stopping The Noise In Your Head : The New Way To Overcome Anxiety & Worry by Reid Wilson, The Dialectical Behavior Therapy Skills Workbook by Matthew McKay, Jeffrery C. Wood, & Jeffrey Brantley, Rethinking Positive Thinking : Inside the New Science of Motivation by Gabriele Oettingen.

 

5. This isn't really advice, it's more meta-advice, or maybe it's better to phrase it as an acknowledgement that you're a smart person and of course of course of course you're familiar with the existence of video games, YouTube, books, the possibility of seeing an additional therapist, or whatever, most likely some or even all of the specific titles I mentioned are already known to you. I wish I had more to offer other than obvious things and/or trite encouraging words. But that's what I've got! Everything you're going through sounds really tough! I hope it gets better for you soon!

 

How do you keep your patience and stay occupied? I don't know, I do not deep down know the answer to that, but the above was my earnest best shot at trying to give the sort of answer to that question that I'd want from me if I were asking the question you asked in the situation you described of me, myself.

Link to post
Share on other sites

I have gone through some similar issues for the past 9 months myself, though on physical pain, not nearly as severe.  I am currently being treated for major depressive disorder, and I am on abilify, lexapro, and hydroxyzine for severe depression and anxiety.  I also take trazadone for insomnia, and I am also battling gout for which I take indometacin and allopurinol, and I am also being treated for very high blood pressure.  Some days I suffer from migraines.  

Now, I don't know if this will help but here is what I found helped me.  I try to stay occupied.  I like to build models, collect things and categorize them (the process of sorting in of itself helps calm me), work on my car, build computers (when I come across used ones) and donate them to people in need, and I am taking classes. I also find reading for entertainment helpful at times, too.    I work from home still, except when it is my turn to do 2 weeks in the office, and I find getting out really does help.  I don't feel I am a people person, but I need human contact for some reason, and I find I miss it when working from home. Zoom does help some, but I miss in person contact. I also have been meditating, which helps with being anxious.  

So, while that may not be feasible for you in some situations, I think the takeaway is finding a hobby that works for you physically, and trying to stay in contact with friends, family, and if possible, work (or former colleagues at old jobs).

Edit: not sure if this will help you, but I found out by accident, and later looked it up to confirm, that alkaline water helps with my joints and feet, when it comes to gout flare ups.  Between the meds I am now on, and hydrating with alkaline water, I find it is helping big time.  

Link to post
Share on other sites

Is there some topic you're interested in and want to learn more about? Maybe check out some of the free or low-cost virtual classes online. Immersing myself in a class helps distract me from the noise in my brain (like so many others on here, I struggle with depression, and lately have become super stressed when I have to be around anyone who isn't my spouse or spawn). 

Another thing that helps my spawn, who is dealing with executive function disorder, ADHD, generalized anxiety, and the myriad ways society loves (sarcasm) trans kids, is creating and sharing his art online. Deviant Art has a surprisingly welcoming environment, and you can find all sorts of amazing stuff there.

And take advantage of this crazy community we've got here on Nightly. We're here for you.

Link to post
Share on other sites

I’m an expert at this stuff by now. I spent most of 2019 in bed with regular ER trips where they would shoot me full of hardcore pain meds
 

I would say that one thing to try is learning something new. One of the hardest parts of being laid up (for me) is the feeling of uselessness. It doesn’t have to be anything serious - it can be anything from taking an online course (Udemy has some great options and there are always coupon codes for $11.99 courses) or doing an app or just reading Wikipedia or watching a documentary.
 

Post on Nightly. We’re all miserable old wretches, but we’re miserable old wretches who care about each other. 


 

 

Link to post
Share on other sites

Is there anything creative you can do while bed-bound? Something like crochet or embroidery, that doesn't require too much movement and you can put down when you get tired. 

So sorry you're going through this. Our medical system really sucks, and it sometimes feels like the doctors are just taking a wild guess when it comes to figuring out what's wrong, and that they don't really care .

Link to post
Share on other sites

Do you want to write strongly worded letters to elected Texas officials in my name? I really need to do that but have been putting it off. 

Link to post
Share on other sites

Thanks, everyone! To kind of answer everyone all in bulk...

I have always hated games. Always. Never once had a gaming system. Solitaire is the only game I can mildly stomach and I got bored with that in January.

I can’t absorb audio information, so podcasts and books on tape don’t work for me.

Funny quirk of all the meds I’m on and all the stress I’m under - I can’t read. It’s been this way now for years. I can’t even remember the last book I read. I have literally no desire to read anything right now, as bored as I am.

YouTube has been my savior, especially drag YouTube. I’m actually really good at contouring now thanks to Trixie Mattel.

Which goes well with my one creative outlet of boudoir selfies, but I’ve exhausted my setup and my creativity levels there. Other creative outlets like crochet don’t work for me because they aggravate my neck problems. I even had to give up my Etsy store.

And while I can write letters to my elected officials in my sleep at this point, girl, I did enough of that last year, I am far too burnt out. I haven’t even done my taxes yet.

Link to post
Share on other sites

Check out Zooniverse. You can do all kinds of stuff to help with ongoing scientific/other research projects. There's minimal reading, it has tons of different ongoing projects, and you really do contribute to some pretty interesting stuff. I've participated in deciphering medieval manuscripts and identifying and classifying galaxies on deep-space astronomy photos. Easy and deeply satisfying for my inner nerd.

Here's a blurb:

You’ll be able to study authentic objects of interest gathered by researchers, like images of faraway galaxies, historical records and diaries, or videos of animals in their natural habitats. By answering simple questions about them, you’ll help contribute to our understanding of our world, our history, our Universe, and more.

With our wide-ranging and ever-expanding suite of projects, covering many disciplines and topics across the sciences and humanities, there's a place for anyone and everyone to explore, learn and have fun in the Zooniverse. To volunteer with us, just go to the Projects page, choose one you like the look of, and get started.

Link to post
Share on other sites

That sounds really awesome for when I feel better, but with my brain fog and all the medications I’m on I feel like I’d be useless at it right now. 

I think my question isn’t so much “how do I occupy my time?” as much as it’s “how am I supposed to focus on anything else when I have something horribly wrong with a very important part of my body that’s worsening every day and needs to be fixed  - but I have to wait.”

Link to post
Share on other sites

Shit Icy, sorry to hear you are in so much pain and are bed ridden. 

Not sure what I could suggest that is of help. But I agree with Fozzie in the main. If you can learn anything whilst in the position you are it would go a long way to alleviate feelings of uselessness. 

Watch a lot of documentaries? 

Beyond that, if I were in your position id probably getting as existential as I could. Practice meditation. Anything to attempt to transcend the physical confinementI. I'd be attempting to practice astral projection, which could be easier or harder than normal depending on the meds you are on, lucid dreaming that sort of thing. If I could write I'd keep a sleep journal to try and make the above attempts at lucid dreaming and projection easier. I know people probably laugh at that stuff, but knowing your attitude (I think?) towards Wicca/paganism I dont think you see it as something silly.

SOrry this is probably of no use...

hope you get better soon! 

 

 

Link to post
Share on other sites

I have been watching documentaries. FYI, If you’re really missing GOT, Age of Samurai on Netflix is a good substitute. And it actually happened! 
 

Being someone who meditates and is also in pain is a weird thing. Body scan meditations are legit helpful for relaxing out muscles, but when it comes to traveling meditation, it’s hard to do and not be pulled back into your body every five seconds. You don’t really get to check out when you need to be focusing your energy on healing. Not to mention, you really want to be at your best because you never know who or what you’ll encounter out there.

My dreams have been crazy vivid lately. I was actually going to start another thread about that...

Link to post
Share on other sites
2 hours ago, Iceheart said:

I have been watching documentaries. FYI, If you’re really missing GOT, Age of Samurai on Netflix is a good substitute. And it actually happened! 
 

Being someone who meditates and is also in pain is a weird thing. Body scan meditations are legit helpful for relaxing out muscles, but when it comes to traveling meditation, it’s hard to do and not be pulled back into your body every five seconds. You don’t really get to check out when you need to be focusing your energy on healing. Not to mention, you really want to be at your best because you never know who or what you’ll encounter out there.

My dreams have been crazy vivid lately. I was actually going to start another thread about that...

You could meditate on the pain and become a sith lord?

 

 

Sorry 

Link to post
Share on other sites
3 hours ago, Cerina said:

Do you want my Disney login? You can watch Wandavision. There's also some pretty good Nat Geo docs on there. 

I have my own! I still need to watch The Mandalorian, too, but I just feel like that's this Schrodinger's Cat (is it good or is it bad? It's unseen so I don't know!) that I'm afraid I won't like as much as the hype suggests, so I keep putting it off. TLJ really screwed with my head :p

I do keep forgetting that Disney owns NatGeo, tho. Also isn't The Falcon and the Winter Soldier out soon?

1 hour ago, Odine said:

You could meditate on the pain and become a sith lord?

 

 

Sorry 

That's the most logical thing to do with my time. I mean, I'm halfway there already.

Link to post
Share on other sites
  • 3 weeks later...

Surgery consult was this morning... and the first thing the doctor said was "I need more imaging." As in two more MRI's - I had cervical and lumbar, he wants to see my brain and thoracic.

The first two MRI's showed a severe herniation in one disc and significant nerve compression underneath it, all causing severe hyperreflexia. Funsies. But I have some symptoms in my hands that he thinks are concerning, too, and nothing showed on the cervical imaging that would explain it.

So, I tried to schedule the MRI's this morning, and was told I have to wait to schedule because a nurse has to double-check the order. I expect it'll be ANOTHER 2-3 weeks of waiting around, but I have been instructed to schedule a follow up with the surgeon within a couple of days of the MRI, so at least the MRI doesn't just re-start the clock again. Unless it takes weeks to get into surgery from there.

I'm going to guess at this point that I won't get any treatment until May.

Link to post
Share on other sites
1 hour ago, Iceheart said:

Surgery consult was this morning... and the first thing the doctor said was "I need more imaging." As in two more MRI's - I had cervical and lumbar, he wants to see my brain and thoracic.

The first two MRI's showed a severe herniation in one disc and significant nerve compression underneath it, all causing severe hyperreflexia. Funsies. But I have some symptoms in my hands that he thinks are concerning, too, and nothing showed on the cervical imaging that would explain it.

So, I tried to schedule the MRI's this morning, and was told I have to wait to schedule because a nurse has to double-check the order. I expect it'll be ANOTHER 2-3 weeks of waiting around, but I have been instructed to schedule a follow up with the surgeon within a couple of days of the MRI, so at least the MRI doesn't just re-start the clock again. Unless it takes weeks to get into surgery from there.

I'm going to guess at this point that I won't get any treatment until May.

wow...

 

That really fucking sucks.  

Link to post
Share on other sites

MRI is scheduled for April 13th, it was the first available appointment. Apparently this round includes an IV, because one of the questions was if I was allergic to anything that’s usually in an IV bag.

I was also asked if I was claustrophobic, and I almost told them that I had recently watched both As Above, So Below and The Descent with no problems whatsoever, and I caught myself in time to say that I had just spent an hour in an MRI machine with no problems a few weeks back.

So, after that, my surgeon’s next available isn’t until MAY 10. I don’t get to talk treatment options for FIVE WEEKS. Unless I get lucky on the wait list. Fingers crossed.

So, right now, it looks like I should be going into surgery on or around my birthday. In June.

Oh! Did I mention that incontinence is the next step if this worsens in the meantime?

Link to post
Share on other sites

I used this gif earlier today when talking about my Shein orders with the whole Suez Canal debacle happening, but it occurs to me it’s the best gif for my medical situation, too.

Its Been A Long Time Waiting GIF

Link to post
Share on other sites
  • Iceheart changed the title to Icy's Crappy Health Updates

×
×
  • Create New...