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Chronic illnesses /daily life with them Join this Group

quality of life

By October 28, 2011 - 2:58pm

I have suffered with a chronic illness for 13 years. How do we achieve quality of life when we are robbed of so much?

By November 3, 2012 - 7:22am

I don't know what happened to the reply I just submitted, but I can't rewrite it now. Kali, we haven't talked in a long time. I do hope you are doing better than I am. I am totally falling apart emotionally because of my roommate, taking care of her and letting my own dozen chronic illnesses go uncared for. I just don't have to time or energy to care for both of us. She is worse off than me so I care for her. She is very suicidal and I'm getting that way. I just can't handle all of this anymore. I don't sleep. I don't eat right. It just doesn't matter anymore. My psychiatrist put me on a second antidepressant but they don't help. He knows they don't but he wants to give them more time. My depression was never situational, it is chemical, but now has become situational. I think they are treated differently, I don't know. I talk to my social worker on Monday if I make it that far. I'll go, just to get out of here for a few hours. Trouble is I have to come back. It was such a tough decision to make the move down here...it was the wrong one. But I can't abandon her now, that she is slowly dying. Thanks for listening. How are you? What's happening in your life? Talk with you soon. bbnrse

November 3, 2012 - 7:22am
By November 2, 2012 - 7:31pm

people who are active and not sick often...can be horrible to live with..i agree! or that has also been my experience.
We also tend to take out things on those we love...which is not right. You might try talking to her when she is in good mood or better on and see what is exactly bothering her.
Housebound can drive people crazy so could be as easy as just get her out for a meal or movie...but communicating is best way to find out.

November 2, 2012 - 7:31pm
By November 2, 2012 - 7:27pm

I think that you might be in place like me...where you are not getting the best health care that you need. Most if not all, chronic illness are like being diabetic. So for the most part we should be able to have good days where we can do things like healthy people.
If you are constantly ill...maybe you are isolated too much and like i previously said your doctors are not helping like they should be. I be lucky that in my past i had great doctors who really tried to keep me as healthy as possible. Now...i do not and huge difference in my health and problems...stem out in emotional problems with my family etc.
So think if you can...get to different doctor..maybe if support group is near you ask around. you might need to do like me and go some place where you need to spend night because it is so far from home. I just do not have any doctors who specialize in this area but 2...and they are bad...main one will not even let me try and see if his new associate is better than he was with me. He was so bad..and now knows he messed up bad that he worried i am going to sue him....which i had not even thought of till i was told why he would not see me from his staff.
So i hope you get some help...so you can feel better.

November 2, 2012 - 7:27pm
By May 13, 2012 - 12:17pm

Susan, I don't mean to stay away but sometimes life, good and bad gets in the way of living the way we really want to. My roommate is in so much pain with her broken arm. She took a very bad fall on Easter Sunday and fractured her humerus in 9 places and dislocated her shoulder. I think the pain and disability is getting the best of her because she has been biting my head off lately. So angry and other than what I mentioned I don't know why. I try not to take it personally but today has been a very sad and depressing day for me and she has yelled at me twice for no reason. I just want to hide under the covers and say yuck to the world and everyone in it. But then, I get a SKYPE message from a dear friend and she cheered me up so much. I think I can make it. I just don't like walking on egg shells. I have been having trouble breathing and singing in church without getting so SOB and tired that I took my oxygen to church today, and oh, it was so much better. I sang all the way through the praise part of the service. It really has made a difference. She yells at me for using that too. Oh well, I am over that. No more talking about hurt feelings. Today is just a very hard day to deal with negativity. Thanks for being there and I'll do better at staying in touch. Now, I'll lie down awhile, cry a little, and get up and help Georgia with her dolls. bbnrse

May 13, 2012 - 12:17pm
By May 7, 2012 - 10:34am

Susan, I have tried to repair our relationship. I sought her reasons for the way she feels, but she won't admit to any of my suggestions. I really think it has to do with her choice of lifestyle, because she knows how I feel about it, being a strong Christian woman. I do not judge her and have repeatedly told her it didn't matter to me. It was her choice and I love her unconditionally. She is my daughter. I love her dearly and never speak against her. I admit I do not write as often as I should and that is my fault. She rarely answers, but I do write occasionally. I will make every effort to write to her more. Calling is almost out of the question. She very rarely answers. But I'll try more. You are right about the abuse...there was every kind of abuse there is and it went on from age 2 -30+. The worst was over by age 20. But that is past history, and I try to live my life as if today is the first day of it. It is the only way I can cope. Or to try to ignore it all and live as best as I can. At church yesterday the pastor spoke on the power of our words! Perfect topic for me!! No one knows the power of words more than I do!!! They HURT!! I guess there are loving ones too, it's just that I haven't heard very many of them in my life. Life is not all bad. I find good things in it. I do look and I do find them. God is good and everything He created is good, Thank you for listening and offering support. I need it, and I truly and deeply appreciate it. bbnrse

May 7, 2012 - 10:34am
By April 30, 2012 - 5:22pm

Chronic illness can be tough! Be patient with yourself and prioritize your daily projects and energy! Also, don't hesitate to ask for health advice/tips from real doctors on how to manage these diseases: https://www.healthtap.com/tips/4245-chronic-illness-can-be-tough-be-patient-with-yourself-and-prioritize-your-daily-projects-and-energy

Good luck!!

April 30, 2012 - 5:22pm
By April 30, 2012 - 9:56am

Dear Susan,
I have no one to turn to for support. No family and no true friends I can feel secure sharing with. I do have a friend online that I talk to but no one close by that I can share with face to face. When I think about it, I just sit here and cry. I have been alone all my life. There has never been anyone there for ME. I give and I give, and I love the role of caregiver, but boy it would be nice to have someone to lean on that really cares about me. I feel so undeserving and unlovable, because I was brought up to believe I was as worthless as dirt and would never do anything worthwhile. Well, I proved them wrong, I went to school and became and RN and worked hard for almost 30 years. I never felt I did a good job, however, because of the nagging belief that I was worthless and unlovable. I also, after being asked to retire because of frequent psych. admissions, went back to school and graduated Magnum Cum Laude with a Paralegal Degree at age 54. I never had the confidence to work in the field, because I could not find a job at a hospital in risk management like I really wanted. I could not work for a lawyer. Too much negativity on my part, or lack of self-assurance. I've been beaten down most of my life and failed at the most impt. things in my life. My marriage, raising my daughter, life. I have no one who cares at all about me, except for online chats with friends. But no one face to face. I attend church weekly or more to give myself an opportunity to meet people but after many many years no close friendships have developed. Ones that have lasted or got past the pleasantries. I'm sorry to rattle on so. I am depressed and upset with my life and dealing daily with 13 or more chronic issues of my own and caring full time for my roommate and the apt. I am just so tired of living like this. There is very little quality to my existence and I see no reason to continue with the exception of all my obligations to others and caring for them. I love it, don't get me wrong, but I am so tired. Thanks for listening and caring. bbnrse

April 30, 2012 - 9:56am
By April 27, 2012 - 2:32pm

I haven't written in awhile, but life has been so hectic. Easter Sunday night my roommate took a bad fall and shattered her humerus (upper arm bone) in 9 places and dislocated her shoulder. She has such bad osteoporosis that they can do nothing to fix it, or so they told her. She is in incredible pain and I do just about everything for her, for me, and for the apt. She does do what she can, but is limited and sometimes does more than she should safely do. But I am getting tired. I am now on oxygen during activity, such as walking a lot or exercising. I am finally going to get my new BIPAP machine and mask on Monday, after a 3 week wait! The mask I have now leaks so badly that some nights I'm up 8 times with it. The alarm goes off, I snore badly at times and in general have had a lot of miserable nights with very little restorative sleep. I fall asleep at the drop of a hat during the day. My depression is worse, I am making very poor decisions that are affecting me in so many ways. I am sooooo tired and weak from the MG and COPD and lack of sleep that I feel miserable. /But, I try to keep a positive outlook and stay upbeat for my roommate. I remain fairly cheerful for her. I cry a lot when I am alone, from tiredness and bad decisions but feel like I have to carry the load. I really don't mind. I love being a caregiver. I've spent my entire life being a caregiver. I was an RN for almost 30 years and don't know any other way. Just needed to vent a little. Thanks for listening. I appreciate it. Life is basically good and worth the effort, but there are times I wish it were over. Love to all, bbnrse

April 27, 2012 - 2:32pm
By April 11, 2012 - 4:23am

the trick like any thing in life is to follow those things that bring you great passion.
I love dogs, gardening, hiking , horses, movies and reading ....my dogs get walked almost daily because that is great for them and I..though often i feel too sick to do it..once out there i realize i am enjoying it!!
I cannot garden now even as much as mom..but plan to try and do more this year...even if you get out for half hour top dead head, water or plant one plant...you feel happier.
Must do things that make you happy and push yourself.
I am having hard time leaving my home and meeting people...most do not get it how i feel because i look well..and am over weight. If only i lost weight i feel great...or moved away from my husband who i have had issues with...but he proves to better friend than all of them when chips are down.
Art is great way...knitting, quilting etc....cooking there are many easy hobbies one can do sitting in a comfy chair.
Yes my house is mess especially since husband came back and just dumped his stuff..i given up
he just added too much..of his 20 yr old crap that should have been given away or dumped instead of brought back here. He is too sick himself to clean it up even if i yelled at him him daily for years ....
he did not even back it ..his old gf did it to get him out of her house.
life is strange...i wonder now how it had been to be born with good health....to enable me to follow my real dreams of just becoming Vet, or naturalist but health would not allow work and college...traveling to far places and than getting sick..would not do either..though i still did back pack.
SO you can do many of your dreams not all but many so still try ..push yourself past comfort zone and you will be happy you did.

April 11, 2012 - 4:23am
By April 1, 2012 - 1:06pm

Hi Susan....the pain is incredible.....I both vomited and fainted...vomiting I've had many times with severe pain but I've never fainted. Luckily after falling into a few walls and some furniture...I actually landed in a chair and put my head between my legs for 40 minutes until everything stopped fading white. Even with good care on my part the toe nail area is infected so I'm back to the doctor every 3 days for monitoring....it was infected before the nail was removed. As you and many others have shared we all have our challenges.

Weather is cooler here too....not fun in open toed shoes with no socks! Kali

April 1, 2012 - 1:06pm

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