Chronic Illness--what do you do

**Jeanna** · 09-23-2010, 03:30 PM

I have been down ---fibromyalgia/thyriod plus other things sick for months now and I wonder what others do just to keep upbeat. I have maybe 1 good day out of every 10 and it is really getting to me. Now I am already on 2 anti-depressants but I feel so worthless when I have days when I either hurt so bad that I can't hardly move or do not have enough energy to move. The second is something new. I have always had fatigue with all this but it is overwhelming right now. Any suggestions?

Oh and if anyone wants to donate some juju's I will take them. I have been playing games in the arcade to pass the time.

**KimZ** · 09-23-2010, 03:44 PM

I'm a thyroid sufferer also..... I have Hashimoto's. I keep busy by working unfortunately or fortunately 40+ hrs a week, plus I am a single mom that runs continually!but, I do not have the Fibro.... But I just wanted to tell you - you are not alone!

**lparker** · 09-23-2010, 03:45 PM

About all I can say is that some of those games in the arcade are depressing to play

**pollypurebred39** · 09-23-2010, 03:52 PM

Praise music! I don't always feel like praising but something starts to stir in me after I've been singing for awhile. Soon my heart is filled with praise and there's little room for anything else.

I also try to find ways to be productive when I'm down. I have a coffee table with drawers and I have a drawer with cards & addresses. I'll write out cards for people who are sick, in the service, in prison, etc. It does not take much energy to sign my name and address a card and it lets people know I was thinking of them and care what they are going through.

The other drawer has quick make-up items like, tinted moisturizer, face powder, lip gloss, hair do-dads, a mirror, a hair brush, and a simple pair of earrings & necklace that go with everything. I also have body lotion & body spray. I'll give myself a quick 5 from sofa make-over. It makes me feel better to feel pulled together. I also have a few dresses that are comfy, no wrinkle, knock around dresses that always look good even if I've been crashed on the sofa. A big perk. Looking good=feeling good.

I keep craft/gift projects near the sofa so I can accomplish something really productive. That helps me a lot to know that I'm am doing something worthwhile.

I stopped watching ALL NEGATIVE TV No more cop shows, CSI, Law and Order, etc. and watch comedy and wholesome family shows only. Big difference in my outlook on life. Very limited news.

I'm also exploring easy crockpot meals that I can set up and forget it so my family always has a decent supper, and my clean up is minimal. So far so good. I feel good about providing a hot supper for my hungry crew instead of sandwiches on my bad days. It really hurts feeling like I'm not doing my share, oh the guilt. I'm also trying to modify my ways so I can accomplish keeping my home nice and tidy with far less effort. I just hate feeling like I'm falling down on my end of the deal. So far things have been going well.

**Momto5RN** · 09-23-2010, 04:06 PM

i have fibromyalgia
i was too sick to work - 3+ years ago was lucky to have 1 good day every 2 weeks .

i started researching the disease and doing life modification ( diet change - stress changes- hpow i react to stress changes not doing so much on a good day it throws me backwards ) and homeopaths and i am now back at work -PT at two diff jobs .

when i was unable to work i would keep going by just counting my blessings that what i had wasnt fatal - that i could still watch my kids play even if i couldnt run with them . That even though i couldnt so as much as i use to do at least i was there to do something with them each day even if it meant them climbing into bed with me and reading or watching TV .

i also find with fibro the less you move the worse it gets .

**alotofgooddeals** · 09-23-2010, 06:30 PM

it is not fatal and at least i can watch my kids play even if i can't run with them... It really makes you think....my daughter has issues that affect her ability to keep up with other kids....and sometimes my mind wanders and i feel sad for her...however after reading your post and what you said... I thank Jesus everyday that she is here with me and i can watch her grow and turn into a beautiful young lady...and I will remain positive on what God has given me....Thank you for lifting my spirits today...

**Momto5RN** · 09-23-2010, 07:28 PM

alotofgooddeeals... your welcome

**Brat** · 09-23-2010, 07:29 PM

Live each day to its fullest..Your still here to enjoy your family. If your not able to play with them like you use to but you can still hold them close to your heart and hear there voices ring.

Make your self move as much as you can stand. It will keep you going longer. Don't dwell on the past look to the future and love each day that you have good or bad.

**shellyrhds** · 09-23-2010, 10:10 PM

I have fibromyalgia, and also degenerative disc disease. I am disabled due to these conditions, all at the age of 36. I am recovering from major back surgery at this time, and I have found that to keep depression from getting me too down, a schedule helps. Even if it means that I have to take a nap because I got up early, at least I did something I planned and I didn't just react to my pain dictating what was allowed in my life. It is really hard to do and I don't pretend that I am succeeding every day, but it is what works for me for the most part... hope this helps!

**mauimagic** · 09-23-2010, 10:26 PM

It really is a challenge to get through physical hardships without succumbing to all of the side effects. Love the advice given - having a schedule really tops my list - we all have a purpose here and one of our jobs is to figure out what we can, will and should do.

Celebrating what we can do provides a base to work and grow from. I still coach my soccer team for children with disabilities even though I cannot go out on the field in any manner. I coach from the sidelines and keep their parents busy being my legs.

Some days are harder to move, even to get out of bed. I am thankful that I have a job because there is no question that I must get up and get going. I've changed my wake up time earlier so I can get stretches and some exercising in to make the day easier.

When you find something that works for you, please post them here so you can help others too!! Polly's idea of praise music is wonderful - music feeds my soul and has the strength to change my outlook for the day.

**pollypurebred39** · 09-25-2010, 02:12 AM

Originally Posted by mauimagic

It really is a challenge to get through physical hardships without succumbing to all of the side effects. Love the advice given - having a schedule really tops my list - we all have a purpose here and one of our jobs is to figure out what we can, will and should do.

Celebrating what we can do provides a base to work and grow from. I still coach my soccer team for children with disabilities even though I cannot go out on the field in any manner. I coach from the sidelines and keep their parents busy being my legs.

Some days are harder to move, even to get out of bed. I am thankful that I have a job because there is no question that I must get up and get going. I've changed my wake up time earlier so I can get stretches and some exercising in to make the day easier.

When you find something that works for you, please post them here so you can help others too!! Polly's idea of praise music is wonderful - music feeds my soul and has the strength to change my outlook for the day.

I think you hit the nail on the head Maui when you said celebrating what you can do. The loss of productivity, or at least the level of productivity that I had has been rather distressing for me. I recently had an epiphany of sorts concerning my circumstances. I need to find ways to make my workload easier, while still accomplishing what needs to be done. Which is why I'm on my frugal, easy crockpot quest, and I've started using paper plates. If I throw everything in the crockpot in the morning it does not matter how the rest of my day progresses, supper will be ready. The added benefit of crockpot cooking and paper plates means my kitchen requires far less work to keep clean.

I'm still working on some of my other ideas, like decluttering our home. It's been a very slow process, but every week I'm a little bit closer to my goal. I'm thinking that the less there is around, the easier it will be to keep clean and neat.

Maybe it's not such a big thing, but not being able to keep up with things has been extremely depressing for me. Celebrating what I can do, and changing things so I can accomplish more has been very freeing. Everyday is a struggle, but I'm just not willing to concede, everything good just can't be over at 43.

And I too look forward to hearing about how Jenna is progressing. Please be sure to keep us updated so we can cheer you on Jenna.

**Jellybeanz** · 09-25-2010, 09:19 AM

Yes I hear you.. I have been sick with many things over the past few years, but just in the last few months diagnosed with a chronic/terminal illness.

The only answer I have is that I try to look on the bright side and know that while I may have two years, someone else out there may only have two weeks...

Still, the biggest thing is that I don't LOOK so sick, other than a little tired /pale, and I don't even tell most people about it. My close family knows , but again, since I don't "look" sick, it's as if they can't understand how truly tired I am. Literally bone tired, can't go another moment and the floors are filthy and there is supper to cook and three loads of clothes to wash.

It's hard to find any support. I live in a very very rural area, and have a rare disease the doctor can't even explain much to me about, so I doubt there are any support groups. If they are, they would probably be non specific to what I have and just driving over an hour each way is not an option.

Okay .. but nuff whining.. the good part.. as I said.. I do have moer time than some... I suppose when I'm gone it really won't matter if the house is dirty .. and I just try to set a goal to get something done each day and hopefully do it. Some times I do, sometimes I don't.

I watch a LOT more tv than i used to, I used to could not sit still two minutes, now I don't have a choice. So call tv trash for the mind, it's certainly got me through a lot of hard days to laugh at something or get involved in a series storyline.

I am trying to explain to my husband right now how I feel and things I feel should be done before I get too sick i can't do it, but he's not emotionally ready to handle this, and I don't know if he ever will be. But I think I'm going to sit down at some point and write some letters out to people I love, that sort of thing.

And if I had a chronic illness without the terminal part, I honestly don't know if that would be any easier.. unless you have some well known disease and actually LOOK sick, people tend to not SEE that you just can't up and go somewhere .. you gotta wait and see how you feel.

So it's also tough explaining it to friends too. Heck even going to get groceries leaves me tired for a day after or more. LOL

So if I was just chronic, I might be actually more depressed to know I have more time to deal with others not understanding and not feelnig purposeful or productive..

Again.. sorry.. no answers here really but it does help to get out how it feels.

Hugs to you all.. and wishing you the best.

**shoiji** · 09-25-2010, 08:27 PM

I hope you have found some type of support group so you can talk with people. Also, have a doctor check on the anti-depressants. Some can just make you more tired, especially if you just started taking them or you are on a dosage that is to high. They can also have side effects.

Try to find sites that will make you laugh. I know it may sound insensitive however a really good belly laugh can really help change your mood.

I hope you can get some relief. Ask the doctor about any support groups in your area. Sometimes hospitals also have classes on how to cope with an illness.

Hang in there. The best thing you can do is ask for help or advice which is what you are doing.