[nicky00]

Good Morning all.

Living with a chronic illness as you all know has many ramifications and presents a whole set of problems within a daily living context.

Lupus I understand can have, commonly as part of its list of symptoms' 'depression as a condition.

Depression can also be a side effect.


There are from my own experience many layers .
and ups and downs within my illness.
On the whole I do not feel clinically depressed . I do know what that feels like as experenced that many years ago.

There have been many posts here on how people including myself struggle with keeping some perspective and emotional stability whilst dealing with a chronic illness.

On a really positive note I have read that some have moved forward with some sort of counselling.

For some they have tried anti depressant medications.

For some it could be the support within a family friends context.

For some it could be a mixture of all the above.

Having counselling in any instance is a good thing but being lucky enough to find somebody who specialises in 'livng with a chronic illness' would in my opinion be the only best effective method.

Although I think Im dealing with my illness in 'doing the best I can' I do struggle and sometimes question what is going on internally because things I say and do at times mean 'Im forced to question ' How well am I really dealing with this illness and is there anything
I can do for instance perhaps some counselling to just move life on and make things even better,.

What are peoples experiences, how do you cope?.


Just to reiterate Im not clincially depressed, Im generally a happy person who stuggles and of course and can also feel overwhelmed from time to time daily which is normal is it not.
I do see unhealthy episodes which Im sure are because Im still coming to terms in some way or not with this illness.

Nicky

 

[Katharine]

Hello Nicky,

An interesting thread and it'll be good to see what people have found helpful

Katharine

 

[Rose Maclean]

Coping

Hi Nicky,

Katherine is right, it is an interesting topic. For myself I believe that this disease has completely changed my expectations of life, and I don't mean that in a negative way. I have stopped rushing (partly from self preservation!) but because tomorrow isn't promised, so appreciate what you have today. I have had counselling and am currently taking Cymbalta, but that is really to help with my mood swings, which I can't control. I am not depressed, I don't think. I am lucky to have a loving, supportive husband. I have found that my real friends are few, and frankly, don't care about the rest. Some days I feel overwhelmed, but most of the time I am just so grateful to have the healthcare professionals I have, who are completey admirable and dedicated. Having met with unbelievable numbers of incompetant medical professionals, I realise how lucky I am. I think this is a very individual journey and if you aren't careful, you will become a victim of this disease. If you have the courage to deal with your emotional issues, you will never be a victim. I do believe the adage "if you can't change your circumstances, change your attitude to it". I am not sick by comparison with some of the people on this site, but I have seen courage and conviction in those people that is humbling.

Thanks nicky for raising the topic. I am interested to see how other people view it.

Rose

 

[elisabethm]

Hi Nicky i think that every person has suffered with Depression on some level.I have had counselling in diffrent things not just with this illness but with other things in life right now i am waiting for counselling.Have been since last June when i was told something i wont go into it but at the same time i would love to have a great talk with someone not nesecerally a councelor i take the medication to keep me on an even keel with what we have to deal with.I have a great hubby but at the same time i dont allways want to talk to him. LIfe at times is what we make of it ourselfs.Right now i can feel a tear in my eye Elisabeth

 

[onetay]

Nicky,
You are right depression seems to be a hand in hand with lupus. I believe that because you loose so much because of the disease and lives are completely turned upside down. I went from a happy very very healthy child and teenager, to a stay out of the sun, slow down, get more rest, joints hurting and swelling, multiple problems, weakening limbs, and of course fatigue constantly adult. You if you find anything in there to be happy about please let me know asap. This is what causes the depression. Yes, I have it and take the meds. Does it work most of the time, but there are days when it feels like it is not working. I do have to say since starting the meds my moods and emotions are now managable. I am glad that you did this thread and it will be interesting to see what others have to say and think about this.

 

[Sage Hen]

Hi Nicky,

Oddly enough..for me. The sicker I become, the better I cope. I think sometimes it is only because I now, have access to the medicines my body really needs, and I have had so many diagnosis, that nothing surprises me.. anymore.

After years, of feeling purely terrible a person, gets used to feeling no other way. When I have an hour or two of feeling better, I am always grateful, and surprised..

I don't want to be unhappy. I don't have a lot of time left, and I choose to be happy. I falter..but, for the most part I manage my emotions now, (with meds..) :lol:, God, my husband, family, my dog, my crafts, and good books.. and my drs, meds, and friends..like all of you. I try to think of my blessings..each day and be thankful..I am still alive.

Wow! guess I can't take credit for coping afterall..can I? :lol:

I must say..that I have been in the mental hospital three times and psychotic once..because of this disease. There was no where but up..to go from the bottom.

I take all my meds and take pleasure in my little dog, visits from my grandchildren, when I am well enough to recieve them. I don't have friends that I visit very often, or that come to my home to see me. I save my energy for my husband and family. I have a couple of friends locally. One, I see about twice a year..and the other I meet at a theater for a movie, when we are both having a slice, of feeling well enough to permit. About once every three to six mos. I don't have enough physical, or emotional energy left for many people in my life. I am being honest.

Love,
Sandy

 

[Sage Hen]

Sorry..an amendment. :lol:

I know..since I tell myself to take only one day at a time and when..I am so ill, I think..I may not make it through..one more day..

I can take comfort in my warm soft bed.

A cup of hot tea.

A glass of water.

No matter..how sick I get..I still take comfort..in those two things.

 

[keebler]

I used to be a type A personality. Everything had to be just right. I would get stressed out if something happened that rubbed me the wrong way.

Now I take a day at a time. I only have time for my family and close friends. If people don't like what I am doing, I don't care. Now when something happens I don't get stressed out, I let it roll off of my back. Learn from it or just plain ignore it because it isn't worth my time , my health or trouble to dwell on it.

I have realized life is to short to dwell on the bad things. Though having a chronic illness is a difficult thing to live with. I make up list that I want to see in my life time. When those are accomplished there is always more that I add onto. For example see my kids get married, watch my GD grow up and maybe see future grand kids.

This is a good topic.
Lyn

 

[KarolH]

I feel similar to what Sandy said, the sicker I get the better I cope with things. This is odd and I cant make sense of it but I just think it is the fighter in me.

When things get bad...........Karol gets mad!!! I feel like disease has no right to invade me like this and I guess in a sense I fight back mentally. I even push myself to do things that most sick people would not even entertain the thought of doing. I am very stubborn and competitive in everything, have been my whole life.

I have animals and good books. When I get down I find if I read a good book it helps me or if I sit and just listen to music it really helps too. My Birds are talkers and they are my passion. They bring me great joy and what comes out of their mouth would make anyone laugh.

I also try to busy myself with new things to fill gaps and voids in my life. For example, a local craft store held a free class to teach people how to knit or crochet so I went and took the class. Now I am knitting and making some gifts for friends and it just makes me feel good.

I am sorry your feeling so badly. I can tell you that I live in denial a lot and anyone who knows me very, very well would tell you that I am the Queen of denial.

It may not be good but it works for me!!!!!

 

[Mrs Wolf]

Good Morning all.

Living with a chronic illness as you all know has many ramifications and presents a whole set of problems within a daily living context.

Lupus I understand can have, commonly as part of its list of symptoms' 'depression as a condition.

Depression can also be a side effect.


There are from my own experience many layers .
and ups and downs within my illness.
On the whole I do not feel clinically depressed . I do know what that feels like as experenced that many years ago.

There have been many posts here on how people including myself struggle with keeping some perspective and emotional stability whilst dealing with a chronic illness.

On a really positive note I have read that some have moved forward with some sort of counselling.

For some they have tried anti depressant medications.

For some it could be the support within a family friends context.

For some it could be a mixture of all the above.

Having counselling in any instance is a good thing but being lucky enough to find somebody who specialises in 'livng with a chronic illness' would in my opinion be the only best effective method.

Although I think Im dealing with my illness in 'doing the best I can' I do struggle and sometimes question what is going on internally because things I say and do at times mean 'Im forced to question ' How well am I really dealing with this illness and is there anything
I can do for instance perhaps some counselling to just move life on and make things even better,.

What are peoples experiences, how do you cope?.


Just to reiterate Im not clincially depressed, Im generally a happy person who stuggles and of course and can also feel overwhelmed from time to time daily which is normal is it not.
I do see unhealthy episodes which Im sure are because Im still coming to terms in some way or not with this illness.

Nicky

Absolutely beautiful and touching words, so so true.
Mrs Wolf.

 

[pollianna]

Hi Nicky, I find it best to come here rather than see a councillor as I was seeing one recently and they made me feel worse :worried: The chap I saw knew nothing about Lupus and even after weeks he still hadn't even looked it up. he was all for "moving on" etc. i broke down one day when i saw him as he just didn't get it. I think we definately need a councillor who understands chronic illness.

I plod on but to be honest I struggle very badly at times as I have no support. I guess I just go up and down with the illness. I am hoping that the meds will help me tho

Great thread

 

[Maia]

I went for a few counseling sessions right before and right after I had to stop working due to lupus. It was a very difficult time and my counselor - who WAS specifically trained and specialized in treating people with chronic and severe illness - was a great help to me. First of all she supported me and actually encouraged me that stopping work and going on disability was the best thing for me, for managing my illness, and for my family too.

She used Cognitive Behavioral Therapy and also runs a support group. In order to find such a counselor, one needs to ask one or more doctors or therapists if they know of anybody who specializes in this sort of thing. They aren't easy to come by - mine was at a University medical center.

The RIGHT counselor will help most people manage living with lupus and help them get a better life view; the WRONG counselor will definitely do more damage than good. I've heard more than a few sad stories now of some bad counselors which is so unfortunate.

 

[maryr]

Hey guys,
I am so glad to see this topic addressed!!! I love seeing all of the POSITIVE responses. Having been diagnosed a number of years ago, I, too, have gone through some major ups and downs with my SLE. I have learned to not look into the future,not dwell in the past and just live in TODAY!!! I know that I have absolutely NO control on the way that I might feel, so I just deal with what is in front of me, at that given moment!!!! I remember after my husband and I had suffered our 5th miscarriage, with no successful pregnancy, a lady told me "Don't give up before the miracle happens". Two months later, we conceived again, and this was a perfect pregnancy!!! That one and only MIRACLE that we have has just turned 12!!!
No matter how down we might feel, what ever problem we might have, just hang in there and know that this will pass!!!
I have been very blessed with a loving husband, a God of my understanding, many wonderful friends and the gift of sobriety for the past 16 years!!!!
Please hang in there!!!!!!!!!!!!!
mary R

 

[Jirel]

I was diagnosised with chronic depression long before I was with Lupus but sometimes I wonder which really came first. Generally I find that while depression hurts, it is something I can usually fight; whereas, Lupus just overwhelms me. It helps that before I got Lupus I had developed a strong spiritual belief that helps me make sense of what is happening - beyond any kind of 'someone else is testing me or has some unknown plan for me' as neither of those ideas would work for me. This helps me be more upbeat about being sick. But I occaisionally slide into major depression, the hardest problem I have is recognizing the depression. I'm used to it, I don't always know when I have it. Work sent me in for counseling about 2 years ago, the counselers concluded that I had every right to be depressed :lol: as in a matter of 6 years my mother died and I was diagnosised with high blood pressure, diabetes, a desicated disc and Lupus. They concluded I was actually handling it all pretty well. :hehe:

You HAVE to find support with this disease. Whether it is spiritual or emotional - of course both is best, but I know there are others out there like me with no family and still others whose family doesn't understand. Another good thing to do, if someone offers help, TAKE IT. I picked a friend that I knew felt obligated to help people and 'let' her start offering help me. I felt that I wouldn't take advantage of her like I had seen some others do. For several years her help consisted of occaisionally helping me with my wheelchair and being sympathetic. I am gradually coming to lean on her more and more... sometimes taking out the trash, picking things up at the grocery store for me and most importantly - twice a week she comes over just to go out to dinner and watch tv with me. And I am learning that having someone like that is a major help in feeling less helpless.

I don't have a solution that works for everyone, just the one that works for me. I love this forum as it is always here. I may leave for a while and then come back but I feel I can depend on it. Also, don't be afraid to mention your problem when talking to people (on computer or in person). I found that lots of people at work had friends or relatives with Lupus and recently found a person on an orchid forum with Lupus and one with Fibro.

 

[nicky00]

Coming to Terms with a Life You Did'nt Plan

Firstly...

A really big thankyou to all who replied to the thread. It was insightful to read everyones posts and Im sure others who read gained a lot also and enhanced yet more understanding of how we process our world in terms of this disease

I'm going through some 'stuff' about coming to terms with living with this illness despite thinking I'm coping I've realised that there are still many things that I have still yet to reconsider and learn to deal with .

Although Ive been reading a lot about chronic illnesses and 'thinking' about writing more on here to explain, present, consider, discuss, question absolutely everything I'm discovering.........I havnt got there yet

But I will

Eventually

Im writing stuff in my head as I go for walks, trouble is I never have a pen and paper!.

For now Ive found an article that simply puts some main points in context.
It was for me a simple but beneficial read.

Here it is:

http://www.anapsid.org/cnd/coping/comingtoterms.html

(The article is about another disease and not lupus but is still relevant)


Nicky