How do you cope with your bad disease?

September 22, 2004 2:13 PM

Does anyone else here have a bad disease? How do you deal with it-especially the bad days? [MI]

I have Cystic Fibrosis and Diabetes and most of the time I deal with it very well because I just don't think about it. But sometimes (usually like today, after a doctor appointment) I get so sad and want to know how other people deal with this and pull themselves out and start functioning again. How do you get over the fear and anger and self pity?

Also, how do you force yourself to continue doing treatments and all the stuff you need to do to stay 'healthy' everyday when you get so burnt out doing it all and it feels so useless because you're just going to get sick in the end anyway. What do you all do? I need some help, here.

posted by aacheson to Health & Fitness (30 answers total)

That's a hard question, because there's no *good* solution to it. I will occasionally cry on a friend's shoulder (literally and figuratively,) because sometimes it just makes me feel better to have a few minutes to wallow in self-pity, but beyond that, sometimes you just have to keep going because the other alternative is to stop. So far, I'd still rather be sick and alive than dead. (Somebody should put that uplifting sentiment on a greeting card!) I'm sorry you're suffering, t hough. I'll keep you in my thoughts and meditations.
posted by headspace at 2:51 PM on September 22, 2004

I've never gotten over the fear, anger and self pity. I've learned to (try to) manage it by relying on friends and family. Having a chronic disease isn't easy. You will have your bad days, your very bad days, and days like today where nothing seems like it will ever be ok. But you will also have days where you are good, days where you are better, and days when you forget for a while your problems.

What to do today is to call friends or family and tell them you are scared and angry. Just talk it out or cry or do what you need to share your worries. Let them know you need them to just be there for you, not to solve your problems or give you answers but just be there.

What to do tomorrow is call your doctor or local CF chapter and see if there is a CF support group. For some it's not a path they choose, but for others just having a group of people who know what your facing can be helpful.

And I know that treatment sucks. I have bad arthritis that is impacting my life more and more. It's a never ending cycle of shots, pills, and PT to just keep where I am at, much less make me any better. But I know that doing these things will help me enjoy the quality of my life more, so with the help of my doctors and friends and most importantly family, I go through it. Because somedays are just great and I know the work and dedication has paid off.

Good luck aacheson. Life sucks sometimes and today is one of those times. I'll think good thoughts and send a prayer your way. If you just need to vent, feel free to email me and I'll listen.
posted by karmaville at 2:59 PM on September 22, 2004

Something concrete that helps me: on my good days, I put together a bad days kit. Depending upon what you need, it can be an envelope or a small box.

In it, you can include:

• A list of things that have helped you out of a slump in the past.
• Medication (if appropriate)
• Pictures of people you love (to remind you why you want to live)
• Pictures of you doing things you love
• Pictures of kittens, or the Grand Canyon, or whatever reminds you that this is a great world.
• Something that makes you laugh
• Phone numbers of friends/counselors/hotlines

Stuff the kit as full as you can, because when the hard times come, most of it won't even work, but maybe one thing will. And going through it will keep you moving forward on something.
posted by frykitty at 3:23 PM on September 22, 2004

I have Crohn's Disease. On the bad days I take medication, go to bed, and wake up when I feel better. Simple solution, yes, but it's the best way I've found to wait out flare-ups. My health seems to run in a cycle. Hitting a bad patch just means that another good patch is ahead at some point, be it in 6 days or 6 months. A positive attitude is key. And a stack of DVDs to watch between naps. Those are important too.

When I'm feeling healthy, everything's fine. When my illness kicks in there's a period of explaining to people that I am sick once again, and no it wasn't cured the last time I was sick, and no I won't be operating at 100% for a while. Last year I needed surgery to remove a section of intestine. I spent six months out of work and out of college in bed while my doctor assembled a team of surgeons and ran tests. I plunged myself into writing, reading, television, and video games - pretty much anything to get my mind off things for a while. At the height of waiting for surgery I logged eight consecutive hours playing Nintendo. If that's not escapism, I don't know what is.

Now a year after the surgery (and ten years after my initial diagnosis) I'm doing much better. I take a handful of medications plus an injection of B12 everyday. I'm constantly watching my diet and no matter what I do I just can't get my weight down due to my restricted diet and lack of energy at the end of the day. But the way I see it, I'll have this illness for the rest of my life. There's plenty of time to feel down about things. I'd like to enjoy the relatively healthy time while it's here.
posted by Servo5678 at 3:31 PM on September 22, 2004

*hugs aacheson*

I see you have a kid--does it help to focus on her? She needs you and loves you. Can you draw strength from that? Or does it at least distract you? I don't have any big diseases yet but i always find that thinking of others helps me put things into perspective, and helps me with general life shittiness. : >

And what usually feeds or refreshes your soul? art? writing? music? tv? games? travel? etc...
posted by amberglow at 4:23 PM on September 22, 2004

My heart goes out to you aacheson. My mum recently died after a horrendous 12 year fight with cancer. Suffice it to say that the last year was appalling and the prior couple not much better but my sisters and I took as good care as we could through it.

Many was the time in which I wondered why she kept putting herself through chemo, radio, painful surgery and much more besides. Over the last month I’ve also been wondering by when given a 5 year prognosis she more than doubled it.

The conclusion that I came to was that she was prepared to go through any pain barrier because there were things in her life which were more important; namely making sure that she was there for her children whilst they were growing up. With the eldest me now 28 and my reprobate 25 year old youngest sister safely ensconced in a good job I figure that she kind of felt that her work was done and that she felt that she’d finally earned the right to some rest.

Not sure if any of this is applicable but I do know that you’re married. Perhaps the way to pull yourself out of a funk after a bad day like today is to lean on them and take strength from their love. If I might be so bold as to venture a suggestion, I’d suggest trying to direct your introspection towards what’s the most important thing in your life, the thing that you’d do anything for.

If I’ve learned anything in the last few years, it’s that one day we’ll all get sick. You’re on the leading edge but we’ll all be joining you sooner or later. We’re all on a meter; take what you can from this life whilst you can. Personally, I’m starting a martial art in a few weeks. How about a new hobby? Yoga?
posted by dmt at 4:31 PM on September 22, 2004

I have advanced heart disease, and last April I underwent heart surgery that left me permanently disabled.

I handle the bad days with the thought that having experienced life, the bad with the good, is much better than the oblivion of having never lived at all. Having a mental condition that 'allows' me to live in denial doesn't hurt either. ;-P

I hate the physical therapy and other life-style changes, so I get as much out of the way as I can first thing in the morning and then throw myself into my hobbies the rest of the day.

Being able to laugh at my 'misfortune' and make jokes helps a lot, too.

Q: What do you call a big glass of Metamucil?
A: Dessert.
posted by mischief at 5:05 PM on September 22, 2004

Response by poster: Ok mischief, you got me to laugh. Thanks.

Thanks everyone. Really. This helps a lot too!

Today I called my husband and cried, wrote an email to my sister about it, she called and I cried, talked to my mom, and left work early to pick up my baby daughter and spent the afternoon with her. Her smiling face is an instant bad-day-kit healer. I like the idea of bad day kit.

It is just so hard to do what I need to do-day in and day out, and like Karmaville said, barely to keep you where you are and not to cure you. And it matters so much to me to be there for my daughter to grow up, but yet I don't do the things I need to do on a regular basis. I get so angry at myself!

All of your are in my thoughts. It's just nice to know I'm not the only one (even though, of course, I knew that.) But it's still nice to hear.
posted by aacheson at 6:08 PM on September 22, 2004

The spirit of comfort and love in his thread warms my heart. You are strong people. Best wishes to everyone for better days, and if anyone needs a shoulder/ear, email's in the profile.
posted by yoga at 6:27 PM on September 22, 2004

"The spirit of comfort and love..."

My reputation is doomed!
posted by mischief at 6:38 PM on September 22, 2004

It isn't quite the same, but dealing with my bipolar is something that I get tired of also...the truth is sometimes you have to do what you need to do out of sheer habit, even when you are so sick of it you could scream, or worse.

I figure those are the days that God gave me friends for...there are people in my life that are gifted in reaching down and pulling me thru whatever crap I am wading thru that day, that week, or however long it turns out to be...

And you know what? once in awhile, grieving the "normal" life you could have had, is NORMAL and I think necessary. But then you catch your breath, and keep going.
posted by konolia at 6:49 PM on September 22, 2004

Wow, this is definitely the most heartwarming/heartbreaking AskMe thread I've ever read. I have to hold back laughter all the time when web browsing at work, but it's rare to have to hold back tears.

A follow up question, if I may: Aside from simply being a shoulder to cry on, what are the best things that people do to help you feel better? My girlfriend has Diabetes, and though we are both young and have a long time before things get really bad, the daily stuff she has to deal with is still enough to occasionally make her angry, fearful and self-pitying. How do I make myself into the perfect bad-day-kit?
posted by rorycberger at 6:49 PM on September 22, 2004

After many years of struggling to live a normal life despite my physical problems, I finally admitted to myself that a normal life just wasn't attainable. I left the "person I wanted to be" die and gave up my expectations of the future. Nowadays I just "chop wood and carry water," and try to live in the moment.
posted by SPrintF at 7:07 PM on September 22, 2004

Wallow in self-pity.
I am not being sarcastic.
posted by ac at 7:22 PM on September 22, 2004

"what are the best things that people do to help you feel better?"

When I say 'leave me alone', then leave me the $#@%$@ ALONE!!!

Unless you have maple nut goodies.

rory: You will get the best answer for your question if you ask it to her while walking in a park on some carefree sunny Saturday afternoon.
posted by mischief at 8:30 PM on September 22, 2004

Aside from simply being a shoulder to cry on, what are the best things that people do to help you feel better?

I've been advised that, for chronic pain, offering distraction is often better than giving sympathy.
posted by callmejay at 9:22 PM on September 22, 2004

I have Type 2 Diabetes. I don't have bad days (until I read something like this thread) because I refuse to think about it. I know at some point I'll have to do something about it (renew my metformin prescription, take insulin, lose weight, etc.). For now, though, I'm ignoring it because I can't handle it.
posted by deborah at 10:31 PM on September 22, 2004

aacheson, I hope this helps.

I read a lot of medical literature for my work, some of it on pain management. I will keep my eyes open for you and if I see anything I think you'd find helpful, I'll contact you. If you ever have a specific question, especially on research, e-mail me, and I'll do my best to find the information for you.
posted by melissa may at 10:47 PM on September 22, 2004

Um, I should have said, I'll contact you if you want that. Just e-mail if you wish.
posted by melissa may at 11:15 PM on September 22, 2004

I'd just like to say that reading threads like these is a good reminder that behind the nicknames and such, there are actual people on the other end. It's just something you tend to forget after a while... "Oh, there's ParisParamus with more right-wing nonsense. I think I'll tear into him..." -- Yet it rarely occurs to me that, hell, PP could be some 85-year old lady sitting in a wheelchair all day with cancer (I just use PP as an example, mind you).

I had a fatal form of malaria for a bit, was in a coma for a couple of days, in an ICU for another month, but was lucky enough to pull through (thanks, modern science!) All I can suggest is to remember that even those of us without terminal or debilitating illnesses aren't going to escape the reaper eventually. I know it's kind of grim, but it gives me solace to think that, well, I won't live forever, but nobody else will, either, so we're all in the same boat.

I wish you all as many sunny days possible until such time comes.
posted by Civil_Disobedient at 12:06 AM on September 23, 2004

I was hesitant to post at first, as my uh..."midlife crisis"...was refreshingly brief and quickly remedied. But when all esle fails, it helps to take advantage of the extra time you've got.

Draw. Write. Pester the local radio station to play something obscure. Play flash/shockwave games; minigolf's okay, just as long as you avoid poker. Effigies are sometimes better than nothing - you ever notice how many of those miniature stuffed animals at the hospital look like something puled from one of those claw-dispenser machines? That's usually because there's one or two of the damn things near the gift shop or cafeteria! Assemble a few of those "little friends" into a mock council and spend your darker moments complaining to them; though it might seem crazy, it provides an outlet for that suppressed despair and rage. Elevate the siuation to a more positive level by prompting your "cabinet members" (heh) to resolve certain issues and enforce legislation toward positive morale.

Remember - bitterness and hopelessness are cries for help.
Snarkiness can be a way of saying, "Hey! I'm still here!"
posted by Smart Dalek at 5:26 AM on September 23, 2004

Yet it rarely occurs to me that, hell, PP could be some 85-year old lady sitting in a wheelchair all day with cancer

But maybe she's happy to be in an environment where people will tell her to fuck off for herself rather than pander to her for her afflictions.
posted by biffa at 7:54 AM on September 23, 2004

Response by poster: rorycberger, I have to agree that you need to talk to the person who you want to help. Some people like diversion, some people like to sit and talk about it, some just like to cry, some like it if you ask questions, etc. Sometimes, I like all of them at different times. The most important thing is to just be there. Not make them feel uncomfortable to talk to you. And listen. And when they appear to be wanting to change the subject or move on or have gotten out of their dark place, let it go. Don't keep asking or remind them again. It's a tough line to walk, I know.

Melissa May, thank you for the link. Thankfully, I'm not in pain. My "bad days" are really just confronting my mortality and choices and the implications of my diseases and what will eventually happen to me. I'm not so sick that I'm in pain....yet. But that's a good link to have. So thanks.


You guys are awesome. Thanks so much!
posted by aacheson at 8:04 AM on September 23, 2004

I wish you all as many sunny days possible until such time comes.

CD, everything you wrote above, but especially this, is so sweet and generous. Does anybody here remember Vera Lynn?

Aacheson, I am glad the link helped -- I do wish I had a really good link about how to confront mortality. Knowing that a lot of strangers have liked your words and want you better and happy certainly can't hurt.
posted by melissa may at 8:24 AM on September 23, 2004

*hugs aacheson too*

it matters so much to me to be there for my daughter to grow up, but yet I don't do the things I need to do on a regular basis. I get so angry at myself!
I can't pretend to know how it is to be really sick but I just wanted to say that this reminds me of so many aspects of "normal" life: you are no more of a neglectful individual than anyone else - other people are just lucky that they're only angry with themselves for not taking that exercise class yesterday/drinking too much last night/not saving any money, but we all do it.

I hope this doesn't sound like its belittling your situation by saying "Oh, we've all got it tough". Absolutely not, I just wanna say - don't be angry with yourself, you're human, not weak, and I'm sure you're doing amazing things for your daughter.
posted by penguin pie at 9:27 AM on September 23, 2004

Last October I was diagnosed with Type II neurofibromatosis. That explains why I'm so frickin' clumsy. I have a 3mm x 5 mm neurofibroma on the auditory nerve of each each ear, and apparently the one on the right side is just barely impinging on the semicircular canal of my inner ear, which is why I have a little trouble with equilibrium. I kinda drift off course when I walk, bounce off doorjambs, stuff like that.

About the only concession I've made to it so far is when I sing in the church choir, I don't process and recess any more. I just stay in the chancel pew from before the beginning of the service until after it's over. Trying to read the music in the LBW (through bifocals, yet) and walk in formation down the aisle is just not worth the struggle. I got tired of bouncing off the other choir members, ends of pews, rails etc. and tripping on the chancel steps.

I'm very wary of the surgery. I've been told to plan on losing at least 50% of hearing in each ear when the fibroma's removed. They sort of have to disassemble your skull to get to it; it's not like they can go in thru the ear canal. The opening where the eighth cranial nerve goes into the brain is waaaaay in there. When they go poking around in there, lotsa other nasty stuff can happen. Mom had the exact same problem, but only on one side, and when they had to remove the neurofibroma, they whacked some facial nerves, and for the remaining years of her life she had a pronounced droop to the right side of her face and some speech trouble in addition to REALLY messed up equilibrium -- she had to use a cane sometimes and used handicapped parking when she drove anywhere.

Fortunately or unfortunately, I don't have to worry about the surgery because I've been under/unemployed since May and couldn't afford it anyway. I can't afford the CAT scan to see if it's growing, either, but then, the equilibrium trouble and the headaches don't seem to be worsening; they're just kinda there. I've been told that I ought to consider having the surgery on one side while I'm still young and a good candidate for recovery, but hey, I like my bilateral hearing (or what's left of it!).

I'm counting my blessings. My hearing's pretty OK (a little high-frequency loss from shooting high-powered firearms with inadequate ear protection is about it for now), but my immediate older brother is going deaf. Like, totally and bilaterally; his family has been told to plan on learning sign language within a few years. Rich also has neurofibromas on his spine, and with present technology they're inoperable.

We've been told our whole family ought to be thinking about genetic counseling (Josh is adopted, thank God), and we'll probably eventually be an article in a neurosurgery journal.
posted by alumshubby at 9:29 AM on September 23, 2004

I have *mild* MS. (self-link). For the first 2 years, I felt like I was just MSman rather than me, constantly checking myself for signals of a relapse, not over-exerting myself etc. Worrying and limiting myself.

For the next year, I forgot about it and lived life like I was in my early 20s (I was in my early 30s) - burning the midnight oil, drinking, putting myself under huge stress, and then had a mild relapse.

Now, I tread the middle ground; remember the stuff that makes me sick and avoid too much of that, while remembering that I've a life to live, kids to play with, a wife to love, etc.

And mostly, I genuinely forget I have it.
posted by Pericles at 9:57 AM on September 23, 2004

Callmejay (I would, but *I'm* Jay, and I'd get confused) sez:
> I've been advised that, for chronic pain, offering distraction is often better than giving sympathy.

and, having lost my mom last week, I'll concur.

It's not the actual sporting event that's the most painful thing, often, it's the 37 instant replays that'll kill you.

Listen, and try to be sensitive to whether the person really wants advice, or just an ear. That's easy to say, though difficult to do, and harder to teach.
posted by baylink at 10:28 AM on September 23, 2004

Sorry to hear it, baylink.

Oops! I mean, "Look over there! A bunny!"
posted by callmejay at 1:44 PM on September 23, 2004

<anya>Arrrrgggghhhh!!!!</anya>

I *hate* bunnies!!! :-)
posted by baylink at 5:10 PM on September 23, 2004