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Does anyone actually cope with Lupus?

1078 Views 22 Replies 18 Participants Last post by  karen.w.
Do you think it is possible to learn to cope with Lupus? I mean I know we all cope with it all the time but really COPE with it?

I know I dont and cant - even after 25 years it still catches me out. As long as I dont do anything very much and rest regularly i manage to feel almost OK but if I do anything - like drive 70 miles to my daughter for the weekend then its at least a week before i am back to something resembling an almost normal person.

And then I have a couple of nights not sleeping properly and off we go again. Too tired to eat or even move.

Tried walking to the pub for lunch cos too tired to cook but by the time I got there I was exhausted and although had a gorgeous lunch I then had to drag myself back home and sleep/doze for the rest of the day.

Seems the answer is not to do anything. Yes - thats it - we should have someone come in to wash and dress us, cook for us, do the housework, do the shopping, and generally pander to our every whim. (Maybe I should get married !! - JOKE) If we had nothing to do but just what we felt like doing and just floated around in a sea of tranquility then this Lupus thing would be almost manageable.

Was gonna write more but am too tired . . . . . . . . .
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Hi there,

I think that's a tough one for many here on the boards to answer. Just because those that are "coping" that well don't generally post here. Most of the people who post regularly here are the "Newly Diagnosed", the "Not yet Diagnosed" and, of course, those who are more severely affected by the disease and its complications.

I think it also depends on how we define the word coping. For everyone concerned I'm sure that it can be seen differently. I feel that I am coping really well but what does that mean? I'm not particularly well for the moment - that's putting it mildly - but I am happy, cheerful, enjoying life despite it all, and I feel "useful" to those around me.

Of course, don't get me wrong, I do get very fed up certain days and frustrated that I can't do things that other people wouldn't give a second thought to, but, most of the time, I sort of feel that being frustrated about that makes life a lot less pleasant and doesn't get me anywhere.

that's my take anyway :)
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Coping even through a flare

I find that coping is different for different people, some people I know who don't have lupus cope with life as it comes, they don't give a second thought about doing ordinary things around the house or going to family functions,:rolleyes: but when the diagnosis of sle or other autoimmune disorders comes along coping takes on a whole new meaning. :eek: Coping for me means getting my bills paid, picking up the mail,:mail: going to the grocery when I am up to it, and cleaning when I can (means letting things go for awhile or even asking someone to help), visiting with my family. Coping for me also means that I stop apologizing for a messy house or laundry not done, there are far more important things in life than a spotless house. My aunt went through her disease not talking about how bad she felt or what she needed although her husband was her main care giver--that was good and bad for me, my family knows how bad an illness can affect functioning as well as meds, but they gringe when I ask for help from them, most of the time. I find that every little thing wears me out, especialy through this flare, if I get worn out walking down the building's hall to get mail, then I wait until I am up to it. If someone makes a demand on me to work outside, I explain that the sun :explain: :sunny: :aww: makes me ill and heck if they don't understand. For me coping is making it through another day. My keys for sucessful coping--let the small things go when you need too, focus on the people in your life and let them help and support you, rest-rest-rest,:cry: cry if you feel overwhelmed, keep your mind busy if possible it is the key for me because now it is exhausting to keep any other part of my body moving, talk to someone, a therapist if you feel overwhelmed, communicate well with the doctors you see, take the medicine you are on correctly, come to this site and know that you are not alone. Well, I hope that something I said gave you idea of how to cope a bit better. take care, karly:hug:
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Thanks for that guys - I think that my original post was one of desperation and total 'pissedoffness' (If its ok to say that!)

I moved to a new house 5 months ago and dont seem to have stopped being tired since. I live alone and have always managed to 'cope' just about somehow, but now, although it is supposed to be in remission or not active I feel so unbearably tired all the time now. I dont know if it is because the house move knocked me out and its taking a while to recover, or whether its just that I am getting older and cant cope with it as well. I used to push through the pain and fatigue most of the time but now dont seem to be able to.

I cant stand having a messy house and am always afraid someone will judge me as being a slob cos they dont understand. I dont think I have ever allowed myself to feel ok about not being able to do things. Maybe its time I dealt with that. After 25 years maybe its time to admit that I do have a debilitating depressive illness that makes me unable to do things!!

Although i dont understand why I am still so tired and ill when the disease is supposedly not active.
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Can so identify with you..

full of good intentions...mind willing body not !
I think many of us know how you feel.
I agree with Christine, except my mind is only willing when I can find it through the confusion!!

Its hard to cope with I have yet to cry about the loss of so much I don't have the energy to grieve:mad: I think coping is just a word accepting it is much harder it affects not just me but my husband and kids and that part kills me!! Also seeing pictures of me and my family BEFORE getting sick makes me sad!! I try to push myself and usually pay the price later, I think its harder for the family that loves you to understand because they think a pill can fix you and when it doesn't then they seem to blame the doctors, your attitude and on and on...
Its just frustrating!:worried: :( :mad:
Just the reminder I needed

Today is not a coping day, and I've beaten myself up for it all morning... I was half-dressed and a half hour late for work, struggling in a fog, running up the hall, wanting to cry... thought more sleep might help, but couldn't nap... thought a second shower might help, it didn't.

Thanks to each of you for your words, I count my blessings- that I haven't needed meds in 6 months, that I haven't had a rash just some reddishness, that I have been able to work most days lately and I have benefits if I can't. So maybe today coping simply means forgiving my body and accepting that today's one of the 'bad days'.
I wouldn't let your doctors tell you when the disease is "active" based on bloodwork and what they see of you in 10-30 minutes in their office one day every 3-6 months. You know when you are well and when you aren't, and what you can and can't do, and the consequences of doing various sorts of activities are after 25 years! Truth is, doctors really can't tell you whether the disease is active or not, you are the best judge of that. Don't let that get to you...

As for coping, I think I cope with things pretty well the vast majority of the time. I do have my moments where my coping skills are pushed to the limits though; the times where I am scared for my future and for my 3 year old daughter's future in particular. I know hubby will manage just fine no matter what... ;)
I definately cope but accepting is another thing altogether. I get up everyday and do the usual routine of getting ready and going to work. Depending on how I feel is how I cope.

A rough day is coming home and going straight to bed for an hour before hubby comes home. A good day is me phoning and asking him to come home early so we can go to the park with the dog. It can vary from day to day.

I totally agree with Maia in that a doctor cannot tell you how 'active' you are by your bloods. My bloodwork is perfect since being on Plaquinel but thankfully my doc knows if I turn up in pain that it's real. It can be so frustrating that bloods do not reflect how you actually feel.

Hugz, :hug:

Pam xxx
copying for everyone is different of course. but after five years of this,I don't think I am coping. perhaps I do go through a few days of coping. but it always seems that I feel I am not. it is one crazy thing after another. virus,stress,flare adjusting to meds, being over tired, fatique
stomach problems, weather problems, eating properly vs cooking,

can you tell it is a bad day, I am to tired to cook or do laundry or go out for something. and I dont know why, I did have a few good days last week. where of course I went and did grocery and took the dog for a walk. is that why I am paying now? how do other people that dont come here and and work and have a social life manage. I wish I knew.

but I don't have any answers ,just more complaints. out of friends and most family don't bother with me. I guess they are tired after five years of me saying I feel sick.but sorry that is how I feel
There is no magic cure, I wish ther was. Take one day at a time, try to focus on the good parts of your day - even it is only an hour or so.
Remember everyone even if the have no illnes they all have bad, sad, and angry days, we are only human.

Thinking of you and sending you hugs and smiles
Peta:lol: :)
Cope, manage, pace ...... all words that have a little bit different meaning. Yes, I cope. I can hide my discomfort and pain from just about everybody except my husband and nearest friends. Manage is what I think you're talking about. I don't manage. I can handle one activity a day. That's it. Today I managed an amazing feat: I took a shower AND went to visit a friend. I came home exhausted after sitting in her house for two hours and talking. I had to eat a substantial snack so that I could cook supper. Yes, I know that's a bad habit. But by late in the day I often need to eat in order to be able to cook the evening meal. It's often just fine to do that, as many days I can't eat once I've cooked.

I don't know about anybody else, but I don't manage to get anything done. It's why I can't work anymore. Simplethings take the wind out of me. Some days, I can't get dressed. Many days, I can't stand to take a shower. Take a shower, go to bed. At least I sleep clean. :rotfl::lol::eek: I tell you, if I have a week in advance to prepare for a "big day" then I can do it. And I can make it through. But don't plan on seeing me the next day because I'm going to spend the day in bed.

My hope and prayer is that this will get better. I have a good friend who has lupus and Sjogren's and during her 40s and 50s she lived with horrible pain. She says that now (she's 64) her health is so much better and she seldom has pain. I know that her health is anything but good. But she does manage. She can go and do and enjoy, even more than she could three years ago. So I keep it in my head that one day I will be much, much better. It's the way I get through, telling myself that this is temporary.

Do others do the same thing? Do you tell yourself things to get through the day? Make deals with yourself?

I wish I couldanswer your question with good news. And I apologize for saying so much. I sort of got started and didn't stop, :lol:

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HI there i have had my illness for 8 years now and still do not cope at times at all. I try to make light of the whole bad situation I started taking my walking stick to work and asked by work mates to stir me up rather than me feeling overwhelmed with sympathy from them. I get that day to day with genuine concern with how are you today? talk but not feeling sorry for me as i do not as a person cope with that. I hope you all understand the above. I try to laugh things off in public and at work we had a name my walking stick competition at work and it was a hoot!!!. My walking stick name is Wally so when i am at work i get how is wally today? I don;t know it is the fact all the attention is not on me but my walking stick It makes me feel better. But that goes to show on the inside I am not so brave but that is ok i have my times when i cry at the doctors . with my husband. They are both great support. My kids draw me pictures and that always makes me feel better. Unfortunatley my extended family siblings do not care or are too scared to care. But that is ok for me it is my illness and how i deal with it. I cried alot yesterday as it is now effecting my central nervous system and cannot seem to go under 10mg prednisone so my dr saw me yesterday once i rang him and told him i was lightheaded numb and could not walk properly. He is so good and he is at the local hospital so lucky i am. Look we all have trouble coping and that is ok we all feel down and pissed off that is ok too. we laugh and cry and joke and get angry and that is also ok. I try to remember it is ok to feel these things and give myself permission to be the person i am with the illness. I hope this helps take care
:wink2: ;)
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:pixiedust:peapods, I can can certainly relate! Have had lupus for 12 yrs and RA for a few yrs. Sometimes I cope better than others! DON"T get married! Just more expectations, unless you find a truly understanding guy. (If there are any!) I'm in a rather crummy mood. Hubby told me yesterday that no matter how bad I feel, or how much pain I'm in, he would switch places with me! (He didn't mean it in an empathetic kind way, he just thinks his life is so rought Thanks for letting me vent! Cathy
I'd have to say that I am not coping well either. I'm tired of pain and fatigue and not getting anything done. I do pray my way through the day, and that helps, of course. I have a friend at church who has been calling me on Mondays and she suggested that when she went through chemo for cancer she used affirmations where she would actually write down the opposite of what negative thing she kept thinking to keep her mind positive. Mostly that she will get better. She also feels that what you think will happen is what will happen. I think its harder with lupus to do that, definately. I am sitting here trying to put words to why. I am tired of getting my hopes up trying new meds and nothing happens or it makes me worse, as in my last dose of rituxan. I am tired of not being able to focus on my autistic (asperger's) son, and of my house being a disaster. I am still at an anger stage of accepting this and don't know how to move past it.
MommyGiraffe, I think we are all in the anger stage. Maybe it comes and goes, but I believe the whole "stages of grief" is a continum and that we move up and down along that line depending on the circumstances of any given day.

Cope? Of course we all cope. What we don't do is get well. What we really want is our "old" lives back. I suppose that some get that -- remission or subsidence of symptoms to the point of being able to return to normal life. But for many of us -- certainly those who come here regularly, coping is a minute to minute affair. I don't believe it is possible for anyone with active symptoms to truly push that physical reality aside and live as if the disease doesn't exist.

Definitely, a positive attitude is good for anyone. And belief in a better future is good for the spirit. But, I've seen too many affirming, faithful, believing people die in the past year. Three good friends, none of whom could believe their diseases away.

I think in a sense, many people on this site are heroes, living each day with physical infirmities that would put others in a hospital bed. I read the stories here and realize my symptoms are mild and that I have little to complain about.

We adjust, all of us. We do cope. But we can't go back in time and we can't pretend to be healthy. What we can do is find a way to retrieve our sense of worth and self-value. Everyone needs to feel whole. I turned to creative outlets. When I feel well enough, I give my spirit a lift by creating something beautiful. I have accepted my house as being constantly in a state of --- , well, mess. My dust bunnies are now named -- I mean, who could "kill" the little dears when they have names??:lol: And I buy meals that can be cooked by taking off the top and putting them into the microwave for 18 minutes.

Life always changes. Who knows, maybe I'd have stopped sweeping every day even if I wasn't sick. I never was a very good housekeeper. And maybe I would have stopped working. It's impossible to know what that other future would have been. What we all have going for us is the present. I believe strongly that each of us must find an way to be glad to be alive in this present - the one we have, no matter what the daily struggle. That is coping.

Hugs to all,
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Hug's to you peapod & hug's to everyone else too!!! :grouphug2:

I don't think we give ourselves enough credit for how well we do cope!...I think we are all a bunch of lovely optimistic people who are trying so hard to adapt & get on with our lives as best we can.

yes we have our bad days,the days were we feel like giving up & we might wallow in it a bit but that's allowed..we are only human :)

I say we give ourselves a big pat on the back but doing so well :)

I have had lupus for nearly 15 years now,mainly affecting my joints & mobility.....I just take each day as it still catches me off guard just how unpredictable this disease is!:eek: but I have to get on with it (well when I can :wink2: ) for my childrens sake.

love to all...karen x :grhug:

p.s peapod I can relate to the housework frustration!.It took me so long to accept that my house can't always be **** & span everyday! & you can guarantee that visitors always turn up on the days thats it's messy anyway! :)
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Reading through all these messages is such a blessing to me. Everyone's point of view is slightly different but all the same! It is good to get things in perspective. Specially living alone I do tend to get a bit reclusive and think I am the only one in the world feeling like this!

Since I moved down to Devon I have been feeling much worse and so have decided to make some positive moves to see if I can improve my life a bit. I am now trying to eat healthier (when I can make it to the shop), eating salads and raw food rather than stuff you have to cook. I am seeing a new Rheumy on May 2 and need to ask a lot of questions. (Dont have any major expectations there!!)

Also have began to see a psychotheripist who is lovely. She thinks that a course of cognitive behavioural therapy will definitely help as there are many other issues that I need to deal with from my past as well as lupus.
So hopefully all this will help a bit!

One point that people made was the 'expectations' we have that tomorrow it is gonna be better. Unrealistic expectations can drain your resources quicker than anything else. Every time i have a good day I get exited and think its gonna stay like it. Of course it doesnt. You'd think I would learn - well I am learning slowly but still feel bitterly disappointed when I feel tired and ill again. I guess its the feisty spirit within us that wants to live life to the full and clutches at any hope that that might happen.
But also like you have all said, its that same feisty spirit in us that enables us to go on 'dealing with' life with lupus!

I have rattled on a bit so hope it all makes sense!!:hehe:
And thank you so much to everyone who replied to this post - it is so appreciated :thumbs:
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Hi again Peapods! :)

Yep, you make sense, no worries there.

I have heard a lot of good things on cognitive behavioural therapy but have never tried it myself.

I think that it is sometimes difficult to know just where we should be with the whole optimist/realist thing.

Like you, I used to get all excited when I had a few good days and the hope that things would get better got me through a lot (it still does but..). However, when things drag on for so long, or when you keep crashing back down to earth with an almighty thud, hope wears very thin.

I think acceptance (maybe tinges with hope) is very important in helping us to cope, essential even, and now, most of the time, I have a pretty good level of acceptance.

On the other hand, that too can be dangerous when there's too much of it. For example, we get too used to feeling bad, we lower our expectations...and we don't let docs know quite how bad things are as we have become so used to just putting up with it.

Looking back on the old me is a painful thing at times but at times is useful as it tells me "hey, no, this is not normal, you need to get some relief, you can't stay like this..."

I'm in one of those moods right now. I can accept the life change, the job change. I can even accept giving up aikido and horses but I can't blindly accept it ALL. I can't accept that I can't even go shopping any more because my feet are too painful to stand at the checkout desk or to walk for half an hour in a shopping centre. I can't accept that my son almost didn't get a birthday treat because I just couldn't manage to do anything with them...(In the end we went because I felt OKish and because it is important to that son right now, but I am paying for it dearly and every step was pure torture). That level of non acceptance is here with me now, and will be with me on Monday when I see my rheumy. It will mean that for once, I won't put a brave face on it, for once I will complain and stamp my feet (not literally :lol: just the thought hurts!)

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