How do people with chronic illness manage?

I have been under the weather today with a little *ahem* intestinal bug ...

No energy

No joy of living

Had to cancel my doctor app't...

Couldn't go to my Thursday Farmer's Mkt...

Slept on and off all day...

It has been awful....

My hat's off to all of you with chronic illness ...

I don't know how you do it......

*sigh*

I'm such a wimp...

:)

And don't worry, the only wimp around here is me.

Prozac?

I doubt it would help me at this particular moment....

Oh....you mean you find it helpful!

And you, sir, are no wimp!

:hug:

please feel better soon.

And as far as how we handle it....you need to develop a wicked sense of humor. And you have to fight...every....stinkin'....minute.

Thanks, sweetie....I'm hoping to feel much better tonight!

Well, I've got the wicked sense of humor...

But as for fighting every...stinkin'...minute?

I'm not sure I could do that......

Good for you, sweetie! :hug:

And hey!

You should make it out of the dreaded 700 Club tonight! :bounce: :bounce:

and I have a feeling you could do whatever you set your mind to. :hug:

You don't really know till you try, do you?

What a sweet thing for you to say....

Thank you...:hug:

you just get used to it.

Oh, how awful for you....

I'd suppose you'd have to, wouldn't you?

You are stronger than I.....:hug:

sorry if that is TMI for the loungers. Oh well, you can always ignore.

Since that's where I've been today...... :hug:

:hug:

I had Hep C and underwent a form of chemo for a year...I was lucky, I managed to make it to work, though it knocked the energy right out of me and I think I still have lasting side effects from it...I found it was the little day to day stuff that stressed me out more than the fact that I was facing a possible death sentence. I was luckier than most of the people I know that underwent the same therapy.

I hope that you are feeling well these days, I have (and had, unfortunately) many friends with HIV/AIDS.

XXXOOO

I'm so sorry that you're feeling under the weather.

It is amazing though, that one does what they have to do.

For me, in dealing with an autoimmune disease, I absolutely refuse to give up. I WILL not give in. So attitude, with a generous amount of coffee and chocolate- AND HUMOR! help me make it through each day.

Take care and be better soon.

Thanks, sweetie.......

I guess you do what you must, don't you?

I keep hearing this, so it must be true...

Attitude really does make a difference!

I am doing what I can and must.....and hope to be better very quickly... :hug:

you find ways to adapt and keep going.

You get depressed at times, and some days you really can't get out of bed to do much, but more often than not you just keep going.
:shrug:

I hope you feel better very soon. I'm glad it's only a temporary bug. :hug:

I was actually thinking of you when I thought of having this thread....

I'm so happy to have you join the conversation!

It's really helpful to hear from you since you live with this all the time, sweetie...

I wish I could make yours temporary too.......:hug:

and have some secondary complications. It becomes a routine and you learn to truly enjoy the good days and try to stay distracted on the bad ones.

Having a 10 year old boy helps with both; kinda reduces the self-pity time (although honestly, I make time for that too; it is DAMN unfair, but what're ya gonna do?).

Take care, my friend. :hug:

:hug:

(Makes note to self.)

And I thought I might see you on this thread. How are you, blondeatlast? :hi:

Sometimes a good cry, sometimes a little rage. Especially when the "normals" tell me NOT to pity myself--:mad:!

About half an hour a week keeps me sane (at least I think it does :rofl:).

Not that Blondeatlast does such a thing, but I sure as hell do on occasion. I know that, all in all, I'm doing pretty well but there are moments when a good whine does a world of good!

:hug:

Maybe you can tell them that lack of empathy is one of the traits of a narcissist...and a sociopath. :evilgrin:

(I recently discovered my backbone after years of searching.)

Yikes! Since age 7?

Type I Diabetes...

My heart goes out to you with that.......that's tough to manage well...

My little bug pales to nothing beside what you're going through...

Thank you for bringing me some much-needed perspective, sweetie......

I'd say you're more than entitled to some self-pity!

As is anyone with chronic illness...

I'll be well soon, I hope.....Thanks...:hug:

:hug:

i hope you feel better tomorrow (if you're not already)

Thanks, sweetie........

Things are quiet for now......

I'm hoping the worst is over...

I want my energy back!

:hug:

I'm so used to feeling like I feel - which isn't near death or anything, just easily fatigued (my kidneys are failing and I'm defective in other ways as well) - that I don't really think of myself as chronically ill, even though I take a handful of pills twice a day, test my blood glucose and my bathroom looks like a lab ... I'm just used to it! Besides, I don't really have a choice. If I did, I'd pick "other."

Intestinal bugs suck. Hope you're feeling better soon.

:hi: :hug:

Denial works, indeed....

I'm very sorry to hear about your ailments, sweetie.....

Do you have dialysis?

Or are you eligible for a transplant?

Wish I could make you better!

I expect to be over this soon......and thank you...:hug:

I'm just Stage 2, which is early kidney failure - enough to a pain in the ass, but not enough to be hooked up to an Iron Kidney. If I ever do go Stage 5, it would be difficult for me to get a tx because of my rare blood type (B-, which is the worst for tx; AB- which is the very rarest, is the *best* for tx!). So far, though, I'm well enough to complain a lot.

Be sure to drink plenty of fluids! And at least some of them should be water! Intestinal bugs may not last long in reality, but it feels like they hang around forever, and boy do they take it out of you ... so to speak ...

I hope you continue to avoid the necessity of dialysis...

I'll step up my water intake!

I don't drink enough, for sure......esp. at night....

Thank you! :hug:

I feel almost guilty posting on this thread. I have a chronic illness, but mine's more mild, I'm sure, than others here. I deal with extreme fatigue. I have days, though, when it's more than I can do to even leave the house. I just have to accept it and rearrange my plans. I realize how damn lucky I am that I can do this. If Mr. JulieRB didn't do what he does for a living, my life would be much more misery-filled.

I know tomorrow will be better for you, and I'm sending all healing thoughts. :hug:

Love, Julie

p.s. Do you have any papaya tablets around the house? We swear by them for intestinal and stomach things. They're in the supplements aisle at the grocery store, and work well.

Extreme fatigue has to be just awful.......

I felt that today......and there was so much I'd planned to do.......Oh well...

I'm glad you have your husband for support....it makes a world of difference!

No, no papaya tablets....

Hadn't heard about them before!

I'll check 'em out, and thank you! :hug:

I have fatigue problems, also and this drug did wonders for me. Not surprising, considering it is a relative to speed, according to a pharmacist friend of mine. This is the drug that the Navy Pilots were given to combat sleepiness.

But even 1/2 tablet gave me a big energy boost. All went well until my insurance company decided that they couldn't cover it for any condition other than what the FDA approved it for, which was narcolepsy.

I can somewhat understand it, as it is an expensive drug, but dang, it did work. I didn't need it every day, just when I really needed the boost.

Due to my CHD, if we could trade bodies and lives for a week, you might conclude I live my life in a quasi-fatigued state. There have been jobs I've had to leave because they were too hectic and I simply couldn't keep up.

But I mostly don't think about it and try to keep as regular a schedule as I can. And what I can do is what I can do. If somebody doesn't like it, screw 'em! They're not my friend anyway.

Hope you feel better tomorrow. :hug:

I hear you, oh do I!

I was thinking today about my nursing career, and how I couldn't do it anymore....

I can't raise my arms (spurs) and of course today my energy was non-existent...

I do what I can.....

As do we all...

I will feel better tomorrow, and thank you...:hug:

You do what you can when you can.

You give your body a rest when it doesn't want to do anything.

You learn to keep "flexible" at the top of any schedule or to do list.

You remind yourself it could be worse & appreciate what you have.

One day at a time. That bears repeating, over & over.



Hope you are feeling much better now. :hug:

I hear ya!

One day at a time, indeed.......

And flexible for sure...

One of my very close friends here is chronically ill, and he lives by these tenets....

I am feeling better, though still pretty tired....

Thank you...:hug:

And I do my best to take it very easy when I need to.

:hug:

You, and ThomCat, and WCGreen, were the folks I was thinking of when I started this thread...

You have an enormous capacity for joy, sweetie....

All of you do....

You need it to get through your lives, don't you?

This ain't fun, and I salute you for your courage and perserverance! :patriot:

:hug:

:evilgrin:

They stand you in good stead! :evilgrin:

:scared:

I hear that!

We're not used to dealing with illness on a regular basis, and it can devastate us....:hug:

I know it teaches me humility and gratitude for my normal good health...

Diagnosed two years ago, I was pretty far gone at that point. Doc put me straight onto insulin, now my endo says my blood sugar levels should have all the other diabetics worshiping at my feet. It takes a little time each day for my new routine, four shots (they never hurt) and blood testing (also never hurt). My feet feel weird and uncomfortable most of the time, but I've learned to live with that and it doesn't slow me down much. Of course, I watch what I eat carefully, but my team is very progressive and I can actually eat most anything, in moderation of course. I consider it a blessing in disguise, I'm probably healthier now than any time in the past 25 years. Hell, I don't even think of it as a disease any more, but more of an alternative lifestyle.

Good for you!

Instead of seeing it as a downer, you took the challenge and made your life better!

That's the way to do it.........Congrats!

Live long and prosper!

:applause: :applause:

When live gives you lemons. . .

But I'm getting a little tired of lemonade, especially with Splenda in it.

You're doing so well......

Hang in there.....:hug:

It's been a rough few months, but it's getting better. I'm off next Saturday for a three week road trip to Washington and Oregon and Washington again. It'll be very therapeutic; we love Portland and the Coast. Sorry, we're not making it down to CA this time.

My problems pale greatly in comparison with the other people who have posted but I do have some annoying and limiting chronic problems.

The thing is, what else are you going to do? You can't just curl up in a corner and whimper (well, you could but that wouldn't make a bit of sense nor would it pay the bills).

I have always viewed it as mentally falling down, getting up, dusting off and moving forward. Over and over. What other choice do you have?

And oddly, that lends itself to a certain amount of humor.

True...what else are you going to do, indeed?

I can see where humor would play a role......

It does help to be able to laugh at yourself!

Thanks for your point of view!

:hi:

I'm in the middle of another depressive episode, and it's very difficult to get anything done lately. Just going to the Dr. yesterday was enough to put me down.

I am so sorry to hear that you're in the middle of a depressive episode......

I hope that whatever treatments you're using will quickly help you back to being your true self...:hug:

I've had MS for 13 years. I'm not going to surrender. So, i just push through and make myself get used to it. You're not a wimp. Feeling crummy for a few days is not enough time to just have it become part of the background of life.

If you felt like that for 2 years, i'm quite sure you'd just get used to it and push through it day by day.

That's why everyone with a chronic illness just doesn't give up and nibble on a bullet.
GAC

I understand what you're saying...Indeed, being ill for a few days is just enough time to be upset about it...

But not long enough to get used to it...

It's amazing, isn't it, what you can get used to?

Survival is key...

:hi:

that is my illness, too!

Funny, after I was diagnosed, I felt like a member of a special club, not a club that I wanted to belong to but nonetheless. FOr me, it has been eight years, but I am still doing okay, for the most part.

I'm Bipolar and have Panic Disoder with agoraphobia, so they are few and far between...but you get your living in while you can.

hope you feel better soon :hug:

The good days become very important, this I am sure of!

I'm much better today, thanks...

I wish I could help you be well, too...:hug:

I should have my new name later today...

and you know what, talking to you and my other friends here at DU does help me be well....so thanks to all of you :grouphug:

:grouphug:

:hug: I'm sorry you've been feeling under the weather during these first couple days of summer. I'm wishing you well. :loveya:

BTW, you're not a wimp. As I tell my kids, "We all get sick once in a while. It's perfectly normal and just part of having a body." :D Use this time to rest and nurture yourself. That's clearly what you need most.

:hi:

Thanks, sweetie...

I'm better today, though I haven't eaten yet!:scared:

I have more energy than I did yesterday, that's for sure...

I have a ton of respect for anyone who struggles with chronic illness...

And it sure is a beautiful summer day!

:loveya:

:hug:

:woohoo: We're taking the bikes, of course! :D


:hi:

I know you'll have a blast!

Take your camera too, OK?

We need pics!

:yourock:

I've long since given up the theory that to take a drug to control an ongoing condition is bad. My philosophy is "better living through chemistry".

I'll do what I have to to keep the pain at bay. I ain't the least bit proud.

Oh, I hear you!

I am absolutely in agreement here....Better living through chemistry is one of my favorite phrases!

I'm not proud either.....I'll take what I need, and the hell with what anyone thinks!

:hug:

My husband and I take it one day at a time. He's been through soooo much in the past 10 years that he has amazed everyone including his oncologist. He just returned home from a stint in the hospital with pneumonia and is talking about wanting to get back on the golf course. I hope he can. I'm sorry you had a stomach bug ... but after reading numerous posts of yours - I know you would suck it up like the trooper that you are!
Hope you're feeling better now.

:hug:

Thank you for those very kind words, sweetie....

I wish all the best for your husband.......I hope he'll be back on the golf links very soon!

It's not over, but I am better, thank you...:hug:

pain sucks

I'm in a situation but fortunately have to deal with no pain.

I have been tore up watching others go through this pain.

I commend them.

:hug:

Pain sure does suck....

I recently was talking to one of my good friends who is chronically ill...

I said to him that it seemed to me that pain makes you tired....

He absolutely agreed...

I commend all my friends who deal with pain on a daily basis......I'm glad you don't have to deal with it...

I wish with all my heart that I could make things better for all my friends who hurt...:hug:

but you brought a tear to my silly head.

:hug:

Oh sweetie......thank you for telling me...

Not all men could do that....

You touched me too...:hug:

When you find out the secret, let me know, too!

Actually, having the internet helps. Even though I'm often grounded because of fatigue and constant pain, being able to talk with people around the world at a moment's notice certainly helps. I would feel a whole lot more isolated if I couldn't let my mind wander as far as it does.

You've hit on something here...

DU is really a gathering-place for folks who have trouble getting out...

I have several good friends here who are in the same boat that you're in...

DU is a life-saver!

There are so many connections here for me....and I hope for you as well...:hug:

I was without the computer for several months last summer, and I felt very lost. I ended up sleeping a lot. (A sure sign of depression)

Some days are ok, many are not.

We were going to go out tonight for dinner, she called me and said she was too tired. So I brought the dinner home to her. I drove around in a car with no AC in Southern CA to find the place I know she loves, and got her a good dinner. It sucked - but it also felt wonderful.

Many plans are canceled, many things put on hold. It just is what it is. I have not seen the ocean since I was 3, and every time I want to go things seem to fall apart.

But we still find joy in the small things :) And damn I love em.

Take the good days and be glad for em, and on the bad days have a few and dream of bigger things.

It IS hard for us at times, she is so tired so often. And it won't get better.

But we still find ways to be happy in it all. It is hard for me, having to care for her, my daughter, working two jobs, etc. Some days I wish I could just sit in bed and watch TV and sleep when I wanted to, but I am the healthy one and I can't just do those things. I want someone else to worry about making the money, paying the bills, and not having to worry about being fired, letting the one I love down and so on.

I feel...fucked. At times. There are days I can hardly get out of bed because I am so down, but I have to for them. Can't sell the house back east, bills are getting better but still are there, and if I screw up anything it can fuck up their lives, I feel like the weight of the world is on my shoulders - and if I fuck up one thing I fuck up the lives of two people who depend on me.

Illness sucks for all involved.

My wife has dreams, but does not have the energy to make em happen.

Many days, she lays in bed, so tired she cannot do much. When she is feeling ok she talks about her dreams and how she wants them, and I want to give them to her - but I can't. And even when I can, she is usually too tired or sick to do them.

We were going to go to the cabin this weekend (her parents have one in the mountains here), but I can tell already she is too tired to do it.

And I feel bad for her. For us. I try so hard, but some things I can't fix. And it hurts me deeply.

So what can I tell you? Just this:

Turn those days that suck into something positive. Watch an old B&W movie, post something here we can read, daydream, whatever. She loves the old movies and history, and even if she can't get out she can enrich her mind.

I dunno, I don't have any answers really - I just wanted to tell you I know it is hard, but that it is ok. Especially when you are going through it with someone you love.

I may never make it to the ocean, but if I can spend the rest of my life being there for the woman I love I will die a happy man. We have a good time together, even if it is here in our modest home in the armpit of CA :)

I wish I had someone who loved me so understandingly.

You are a prince of a man.......

This is an amazing narrative...

I do all those things you suggest, and they do help...

Having someone you love next to you makes it all worthwhile...

She is so lucky to have you.....and you to have her!

:grouphug:

people here.

And I am working toward a more manageable situation.

I remember being angry at first. I have a hard enough time being normal! But you accept it, and take advantage of the good days to their fullest.

There are some good sides to this, at least for me. I have become somewhat more considerate. On my good days, I remember to compliment people whom I think have done something well. Not long ago, I called a local columnist and told him how much I enjoyed his writing.

I used to work in the library here. I grew quite fond of some of our older patrons. A couple of them are shut-ins now. I call them, and visit occasionally. I guess I empathize a bit more than I used to.

I hope you feel better soon, Peggy. :hug:

We all have our problems, and we have to deal with them...

I often see more compassion from folks who are chronically ill...

Thanks for your input! I am somewhat better...

:hug:

I have hypothyroidism and take my Armour thyroid everyday. I take a nap or two a day, and don't work. I can't get a job anyway. I'm not bedridden; I just will never be a super energetic person that bounces out of bed early in the morning. I can't make it on eight hours of sleep a night. Ten is a lot better.

Because I'm not a high energy person my teachers told me I was lazy and stupid. My grandmother, who had an overactive thyroid, thought my mother and I were lazy, because we both took thyroid starting at age ten.

I'm glad you can at least have some control over your illness...

And you know what to do to feel well...

I am better, thanks...:hug:

at least as best as they can.
I mean what are the options.
My heart goes out to those in that situation.
Life is totally unfair.

we don't. The alternative is to check out and I'm not willing to do that. Besides, I've been a chronic pain patient for so long I really don't remember life without it. It's my life, my reality and I do the best I can.

:hug:

:hug:

:* to go with that :hug: ?

I would be quite the fool to turn that down :*
:hug:

I think you're right....

People manage as best they can...

I too feel for my friends with chronic illnesses....

I wish I could cure all of them...:hug:

For myself, I just try to keep a sense of humor and take everything one day at a time.

I've been remarkably lucky since my diagnosis. My symptoms have not progressed much since they put me on Betaseron. So that is a blessing. I'm still able to travel by myself, so that is my main concern.

Just after my diagnosis, I got hardcore into my genealogy and started writing a book about my dad's dad's family, and that has kept me focused on something other than my illness. It has kept me going, having an all-consuming hobby. I travel the country meeting cousins, scanning their photographs, collecting letters, stories, etc.

My neurologist was tickled when I told her about it. She said she thought the genealogy was keeping me healthy and focused, and to keep it up. My last MRI showed no new lesions, so that was also good.

Anytime I start feeling crummy or sorry for myself (like yesterday, when contrary to a regular fire drill, we seriously thought the building was on fire and I had to walk down five flights of stairs! When people are standing outside the building pointing up, there could be problems....), I remember my Big 3 for multiple sclerosis:

1. I'm not wearing Depends.
2. I'm not blind.
3. I'm not in a wheelchair.

If the day ever comes when I DO end up with one of those, I'll take that one day at a time too. But right now I'm too busy to dwell on it.

How good that you have such an all-encompassing hobby!

I'm sure it's helping you...

Keep those good thoughts uppermost!

:hug:

Hi there from one person with holes in her brain to another!

I like your Big 3. Funny how you appreciate those things that we all take for granted, until you have an episode of optic neuritis or vertigo that won't let you stand upright.

On my last visit, my neuro shook my hand.
I had just told him how I had broke a rib- don't ask me how, I was just standing up blow drying my hair and fell, hitting my rib on the bathtub. I am a carrier in the post office and I had been working 10 hour days, oftentimes six days a week, as we had just had a horrible blizzard and life was not normal here in Sunny Colorado. I am convinced that I had just been doing too much and I was totally worn out.

But he said to me- "but the thing is- that you could- you could work so much" he thought that it was a good thing.

Anyway- nice to meet you.

I was actually diagnosed two years ago; the folks here on DU were some of the first to hear the news.

I've been remarkably lucky, like I said. I didn't have to have a spinal tap to diagnose (I had a lesion right in the main diagnostic center), and another right around where my neck attaches to my spinal cord. And I've been very lucky that I can take Betaseron and haven't had any major side effects or liver dysfunction from it. I'm also lucky that my husband has been so wonderful and supportive. reprehensor is so incredibly thoughtful-- he helps me with my shots, helps with the housework, and brings me a drink or something, just because he knows I'm tired.

Most of my symptoms are massive leg weakness/sluggishness and I'm constantly massaging my neck. When I dip it over too far forward I get bad tingling and get dizzy, so in having to keep my head upright, it gets very stiff, making my shoulders and back stiff as a consequence.

Gah...and the HEAT sensitivity! I used to be able to work out in my garden in 104 degrees and barely feel it. I'm a native Texan! Now, I sprint from the car into the house, and can't stay outside longer than 5 minutes from about May to late September. Any kind of summer activities are pretty much OUT.

A few years ago, during Hurricane Rita, we actually went to hardware store and bought a generator. Thank God we did because we lost power for hours at a time. Without air conditioning or a fan, I would have passed out. The generator at least let me aim an area fan directly at myself.

My job is OK usually (I'm a technical writer) but for one or two months during deadline time (like now), things get pretty stressful, and I end up working lots of overtime, which can be bad.

My disease is manageable. When I think of how many people can't walk or can't see or are in interminable pain from it, I feel bad even making a small complaint of discomfort. There for the grace of the big guy and all that..... I'm hoping it continues for awhile!

:hi:
fsc

Oktoberain has some chronic health issues that she does battle with every day... Her grace under pressure is almost inspirational, and that makes me try harder to help her in any way that i can.

By comparison, my aches and pains are minuscule, and understandable given my age and the way i have abused my body over the years.

...either too high or low? What about an unusual sensitivity to sunlight? Chronic fatigue and joint pain together sometimes indicate an autoimmune condition. Intestinal problems can also be a symptom.