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Getting People To Understand What We Go Through - Ok, maybe a wee bit of venting too...

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Posted 5/12/2007 3:24 PM (GMT 0)
Hi Everyone!

I was just reading Barbara's post (stick to your guns woman!!!).  

Getting people to understand what we go through can be so difficult.  Why is it that some of the people we are closest to try to brush our illness aside?  It drives me crazy at times.   I had words with a good friend of mine over it last year.  She was bound and determined to get me out jogging - she was arguing with me when I said I had no energy to jog - told me I had the wrong attitude etc... Do any of you want to jog???  I mean PLEASE!!!  My mother suggested that my pleurisy pain was gas pain - well, ok Ma but I've had gas for the last 16 months then!!!

My husband (who I just adore) has finally clued in - ahhh - at last!!!  He is way more understanding these days.  It took him meeting another man at work whose wife was going through the same thing for him to understand but at least he's getting it.  He now asks me daily about how I am feeling and often reminds me - don't overdo it - relax - take it easy etc... He still suffers from "brain farts" though - like when he asked me last week why I said I was not going to have 50 people this year to our annual BBQ... grrr!!!

I'm sure we all go through it.... what have you done to make people understand?

Posted 5/12/2007 4:15 PM (GMT 0)
I'm not sure you can make people understand... We don't look sick most of the time... and I don't ever feel comfortable talking about all my aches and pains because I don't want people to think I'm whining...

"The Spoon Theory" helped me with my best friend and my in-laws...

Other than that, I've decided that unless it hits pretty close to home, it's verrrrry hard to get someone to understand what this life is like...

At least we can come here!!!!

Take care.
Lisa
Posted 5/12/2007 4:53 PM (GMT 0)

Hi Sands, I can only speak for myself but to tell ya the truth it's my own fault when they don't get it. I never wanted to disappoint anyone so if they bugged me a little or guilted me I would drag myself off to do what they wanted. In my defense I also wanted to beleive that I could still do certain things.

I've recently realized that I have to know what my body is sayig. yes means yes and no means no. My friends and family have seen me struggle to do something just to have to turn around and come back home. If they truly are people who care about me they don't want to put me through that again.

They have begin to change their speech when they ask me somthing. It's now becoming would you like to go if you are up to it? or if you get tired I'll run you home. My brother actually took me home in the middle of church service one day. I couldn't stay I was miserable. I walked out side for some air and he came out and said come on hun I'll take you home. You have to set the ground rules. it's hard somtimes because we think they should be able to understand without us coming out and telling them. sort of like "well if you don't know I'm certainly not gonna tell ya!" LOL. Consistant ,consistant consistant, I think is the key. at least for me it is.

hugs

carol

Posted 5/12/2007 5:09 PM (GMT 0)
Hi Carol and Lisa - You are both right in that... We don't look sick but can feel absolutely drained at times and... that it really is up to us to make people understand.  I too have been backing out of things Carol - if I don't feel like I can do it or if I just don't feel like doing it, I say No now.  I think that part of the problem (for my mother anyway) is that she doesn't live near me so never sees me when I can hardly walk or need rest after a busy day.  She can hear it in my voice at times and comments that I sound tired but she doesn't actually witness anything.

My husband just called from work to see how I was feeling - I get all warm and fuzzy inside when he does things like that yeah

I guess that I didn't really understand that all this fatigue was real (and normal for us) as well.  That has been where everyone here has helped me to understand so a HUGE thank you!!!  I've only been on a short time but my eyes are wide open now!!!

And... we do all have each other :)  That too makes me warm and fuzzy... lol

 

Posted 5/12/2007 9:20 PM (GMT 0)
sandspoker, it is very hard to get othe people to understand just how difficult this disease is to live with everyday and that the fatigue we feel is way beyond just feeling tired.  It's also hard to get people to understand that a "good" day for me would be a crummy day for a healthy person.  Even on "good" days I have pain and fatigue.  I go through some of the same things you go through with family who lives farther away not seeing how hard this disease is on me and it's hard for me to bring it up to them because I don't want them to think I'm looking for sympathy or that I'm whining.  I just want them to understand. The Spoon Theory is great and can help some people understand what it is like to live with lupus everyday.  I would suggest sending a copy to your mom.  You can find it at: http://www.butyoudontlooksick.com . Even though my hubby is very supportinve and understanding, I had to gently remind him that I have been pretty sick lately and need a little more help from him.  Part of that is my fault too though because I hold back and don't like to talk too much about being sick.  I also do what Carol does sometimes to and want to pretend or think that I can still do all the normal things everyone else can do, but my body very firmly tells me otherwise. This is an ongoing struggle, but like you said, it's nice to be here among people who truly relate and understand. Take care
Posted 5/13/2007 2:25 AM (GMT 0)
Hi Hippi - thanks for the support. 

You are right about having to remind our husbands from time to time too.  I guess in some ways we can be our own worst enemy - when we try to do too much. 

I had a bad case of Lead A** today...lol.  I've been sitting around all day.  I just got up from a 3hr nap and I still feel lazy - oh well, my new atitude dictates that I will continue to sit and not look at the mess in my kitchen.

Posted 5/13/2007 3:39 AM (GMT 0)

I still have no diagnosis but I am just tired and achey all the time.  It seems as if whatever I have it is a disease of convenience.  When it is convenient for other people to deal with it that is.  My husband is supportive until my fatigue and aches interfere with a clean house or some responsibility I have let go.  Then I "just don't care about things enough to get myself going". Oh Blah..........

Talk about inconvenient. Diagnosed or not this whole thing is inconvenient!

Posted 5/13/2007 12:52 PM (GMT 0)
Hi Bitzi! 

You are so right - it's a terrible inconvenience!!!

Btw, I was getting the same type of reaction here too when I'd let things slip because I was just too tired or feeling lazy too get up and do them.  I used to be a lot of things.. lol.  I just love to cook and I'd have dinner parties almost every weekend.  I always invited people over in the summer and I would be the greatest hostess.  Now?  Forget it.  I tend not to even plan anything in advance anymore because I just don't know if I will feel up to it.  I am now mastering the art of getting away with as little as possible and still making things look ok... lol

Even without a diagnosis, you know how you feel.  I had my symptoms for almost 5 years (getting progressively worse as time went by) before they came up with Lupus.  My GP was onto it a long time ago but he knows me well and has heard my "aches and pains" complaints often and seen my joints in action on many occasions.   I'm not sure how many markers you have but the fatigue is certainly a clue.  Apparently, it is the number one complaint from Lupus patients.

Does your husband know that it is pointing towards Lupus?  And, if he does know that it is pointing in that direction, does he actually know what you are dealing with?  Like I said, it took some time here but my husband has finally clued in (this site helped too because I would relate what others wrote about how they were feeling) and it's made my quality of life a lot better - both physically and mentally.  I don't feel as guilty as I used to because he understands that I'm tired (don't forget thought -- he still experiences those brain farts every now and then..lol) and he helps me out with the housework. 

Do you work?  I still work full time but luckily, I have my own business and I run it out of my house so when I get really tired, I take some time and I rest.  I really don't think I could go work a full time job for anyone anymore and work 40 hours on a weekly basis. 

None of us asked to be sick and it's certainly not our fault that this is happening to us. 

Now that we are dealing with this, it really is our families who have to learn to accept how we feel on a daily basis and they have to make some adjustments.  

Be Strong and Stay Positive!!!

Sue

 

Posted 5/13/2007 1:50 PM (GMT 0)
Hi Sandspoker:

I'm trying to stick to my guns. I now however, feel this awful weight of guilt. I didn't mean to make my in-laws feel unwelcome in our home. What I wanted was compassion and understanding. I really didn't want to hear, well we don't want to stay where we're not welcome. We just wanted to celebrate this milestone event with brother. You should be happy about it Barbara, not stress out or upset. Needless to say this is longer fun for my husband and he's saying he regrets the whole thing.

Our fatigue can be such a huge part of our disease. It's probably the toughest thing, next to the pain, to learn to live with. It can appear at times we're very lazy, but that's not it at all, we're just flat out worn out. I feel guilty cause I can't do anything at all. Between the fatigue of my lupus and the fatigue of my MDS, I truly sleep some days as much as 20 hours out of the day. That's with me taking a prescription for provigil to keep me up.

I've encourgaged my family to read up on lupus or my MDS. I've handed out copies of the spoon theory, but people still don't get it. I can't force it on people, so I've just withdrawn from relationships with friends. I've even withdrawn from my family, except for my husband, daughter, and my dad. With these 3 I just be me. I know that at least 2 of them love me no matter what, the last one, well.........

You take care of yourself and don't over do it Sue. I wish you luck in helping those around you understanding what's happening to your body, and mind. Take care and Happy Mother's Day.

Barbara
Posted 5/13/2007 7:59 PM (GMT 0)
Hi Sandspoker,

I am glad you and Barb have taken the time to speak of this. I too suffer from exhaustive fatigue. Besides the Lupus, Sjogren's Syndrome etc combo you can see below, I also suffer from Porphyria, an acute and skin form. I am affected by the sun from 3 darn diseases, Sjogren's I believe the sun sensitivity is from SSA antibody. I sit in the dark and wait for night to go out. So I never know whether it is day or night and messed up sleeping patterns we get does not help. I also am not able to take alot of meds that most people with lupus can. Porphyria is an iron overload disease and if the wrong med is taken, I am in iron-overload on the way to the local ER, who knows me by name. eyes eyes So not only being tired, but living like a vampire, LOL, people don't always get it. My lupus almost killed me 3 years ago. Also the Plaquenil used for my Lupus/Sjogren's is a contributor for the Porphyria flares, but with out it I am much worst. The pain is hard to describe, because like everyone else here is mentioning, we don't look sick. I hate when people say well, you look good, unless it is a friend who understand that this day really sucks because I don't feel good, then when they say I look nice I know I do and I smile.

Speaking of understanding, when my Rheumie's PAC started seeing me she said you have one of the most difficult pain combinations I or he have ever seen. Lupus is already considered a bit less common, but then she couldn't understand why I was crying after being at an 8/9 out of 10 with pain levels for days. mad I am thinking woman you couldn't make it a day like we do. Now I see my rheumie and he knows I have rare things. He is awesome. As for the hubby well, we are seperating right now. 3 years ago, when the Lupus was flaring, I lost the support of my job, friends, but not close family. My parents are awesome and I can call anytime to vent. I lost all but 3 good friends. It has taken me 3 years to get the friends that I have now who definitely understand. But it was lonely when all the others bailed. I also rid my life by choice of all negative people who could not support me. I can say my friends are great, yes they push me to do more, but only when they know I need to start exercising to recover and feel better. They know their limit or else. LOL.

I also understand of the spouse situation as stated, we are seperating. But without all of you here, I don't think I would make it some days. Even though I do not really post, I am always reading, and sending good thoughts everyone's way. This group made me realize I am not crazy, but a good person with a nasty illness. This is my family, and I hope you all will find the support you need, the strength to make it when people are not getting it, and that you all are well soon. Sorry I rambled.

Leta
Posted 5/13/2007 8:33 PM (GMT 0)
Hi Leta - No need to apologize - we all need to "ramble" from time to time. 

I hear you about friends - I know I've lost friends along the way too.  It seemed that when I stopped doing the entertaining, we didn't see some of our "friends" anymore.  I'm fine with that...  I too have rid myself of some people who were too negative - I just couldn't handle, nor did it seem that I had the energy to listen and defend myself to them anymore (one being the girl I mentioned in my original post).  I know I have a g/f who is tired of my complaining as well...oops...lol.  I try not to whine when we chat but I have chronic pain and sorry, but when it's painful to breathe, it's difficult not to say something.  I have another girlfriend who is a nurse and she is great and very helpful (she breaks out her text books often for me).  Note to everyone - get a friend who is a nurse...lol

That's too bad that you are separating.  That can be a very stressful and difficult time - and we all know what stress can do to us.  I've been there and done that too Leta.  Sometimes it is for the best though and there is a sense of relief after it is all done.  Again, just not dealing with the stress that an unhappy marriage brings can be a blessing in disguise.

We are probably all really good people who have to deal with these terrible, mean and vicious condition(s).

Be Well and Best of Luck with everything that is going on... We are always here for you...  

I agree - we are "family", "I've got all my sisters in me" (sorry Bill...lol).

 

Posted 5/13/2007 8:49 PM (GMT 0)

Barbie...

I think it's your in-laws who are trying to lay a guilt trip on you... and I say - Don't let them!!! 

All I hear in your post about your conversation with them is..."we, we, we" and nothing about you.  That's just not right!  I'd like to see them spend a day in your shoes! 

I feel so tired and useless today Barb - I just got up again and I haven't done a darn thing today or yesterday for that matter...

I'm glad your daughter remembered Mothers Day too...

Take Care!
Sue

Posted 5/14/2007 3:11 PM (GMT 0)

Sandpoker,

Actually, my husband was the one to first come up with Lupus. He is the one who printed out the 11 criteria and talked to my doctor. I have some sketchy markers fatigue, aches in my joints, abnormal blood counts, but no pos ana.  I don't work during the day but come 3:00 I am on the go with the kids till 8 or 9 with all their activities and schoolwork. I it just hard when you have to pep talk yourself all day to accomplish the smallest of tasks> I'm sure you get it.  Anyway I just wanted to make sure i responded and I hope you are feeling better too.

take care ,

B

Posted 5/15/2007 3:02 AM (GMT 0)

I really struggle with this, too. It seems that I've reached the stage where people have stopped asking me to do things. I can't decide if this is a blessing or if it hurts my feelings! confused   So, either my friends and family are trying to be sensitive to my needs, or they've just given up on my ever feeling well enough to fully participate in life...who knows?

I agree with the others about the importance of letting people know your needs. And you just have to shrug it off when they don't understand.

Posted 5/15/2007 3:24 AM (GMT 0)
I am very lucky...my family seems to very understanding...I feel bad that I complain to much.

I have to share this with you all...

I had shared the spoon story with my wife last year.

We took a quick trip to North Carolina for a long weekend last month. Found this little town that had some old shops. While we were out shopping, my wife had came across these money clips. She had picked one up for me and guess what it was. It was a bent spoon....ohhhhh

My wife said to me that she knows that I can use a lot of spoons some days and by given me this spoon to carry around that I will never run out...I will always have a spoon....

mamamuse count it as blessings....
Posted 5/15/2007 3:43 AM (GMT 0)
Sandspoker, Great topic. And it doesn't just pertain to us gals does it, Frank.

What opened my hubby's eyes was a thread on fatigue that I printed off last year. I've thought about suggesting that we start one and each of us explain how the fatigue affects us and what it feels like. I picked fatigue as a suggestion because nearly all of us, if not all of us, suffer from extreme fatigue. We can also talk about how our pain feels and what this disease is like for us. If we all tell our stories and print them all off for our partners, it might be educational for them.

Haven't you noticed that if your spouse hears something you've said 100 times from someone else they really hear it? I had told Jack about my fatigue in just about a thousand ways, but reading the thread that other people wrote got through to him.

Think we ought to try it? What do you Forum Moderators think?

Pat
Posted 5/15/2007 11:52 AM (GMT 0)
That's a great idea - start one!!!

Like I said in one of my posts, I've read some of the postings from here and told my husband some of the things that people on this forum go through and that in itself has helped him to understand.  You are so right too -- we can say things over and over -- then someone else can say it once and somehow, that message makes it way in... lol

I think this whole Lupus business throws our immediate families a "loop" as well.  Women are taught from a very young age that we are the care giver in the family - the one who is always there... suddenly, that whole theory has to be re-worked because we don't have the energy to give so much. 

Bitzi, how did your husband even know what Lupus was??? 

 

Posted 5/15/2007 6:36 PM (GMT 0)
PattyLatty - No need for approval or anything from Forum Moderators, just go ahead and create the thread whenever you want to. We generally only try to make sure everyone is welcomed & is nice to each other & watch for violations of the forum rules. Cheers,
Posted 5/15/2007 10:09 PM (GMT 0)
Hi Sue:

Just wanted to see if you were feeling any better today. I know I'm certainly feeling under the weather the past few days. My in-law are very self centered people. They also aren't a very warm bunch of people. We'll get through the end of the month like we always do. I did speak with my Mother in law on Sunday. I made it a point to mention that I've got blood cancer and will be requiring a bone marrow transplant to save my life someday.

Her response was Oh dear that's not good, and that's it. Guess I was hoping for a miracle but with them I'm not excepting that at all. I just need to accept that they are the way they are. I try to treat them the way I'd like to be treated, and if they can't do that in return, then I just need to move on.

Hope you feel better soon.

Take care,
Barbara
Posted 5/16/2007 10:25 AM (GMT 0)
Hi Barb - Yes, I finally had some energy yesterday - thanks for asking.

You say you are feeling under the weather too - what's going on?  Or is it a case of the blahs?  I get those...lol

Your in-laws do sound self-centered!!  People (and they way they act/react) never cease to amaze me.  Some seem to live in their own world but I wonder if that's how they deal with things they don't know how to react to.  Perhaps Bill was brought up that way too - that would explain some of his actions.  

I've had some issues with my in-laws too Barb - I know it's a difficult position to be in.  I had to put my foot down on several occasions.  I told my husband too - No one is coming into my house to treat me bad or make me feel uncomfortable in my own home.  That's why I told you to stick to your guns.  Things are MUCH better now.  I had to deal though or I would have gone mad - they live about 10 minutes away. 

Are they still going to stay at your place the weekend of Bill's retirement ceremony? 

If so, are they ALL still staying there?

Posted 5/17/2007 3:40 PM (GMT 0)
Leta, I see that you are a knitter. Knitting is my passion, but I didn't start knitting until I had a bad flare about two years ago. It has been very healing for me. I've also gotten to know a group of knitters who never knew me as a slim and active person, so they all accept me for who I am today. We gather at our favorite yarn shop and knit together.

I don't talk about my lupus with friends unless they specifically ask how I'm doing, and even then I don't go into any details. I have a friend who was diagnosed with SLE 25 years ago and I slowly started withdrawing from her because lupus was all she talked about. Everything she said was a reminder to us that she had lupus. It got very wearisome. I just didn't understand her. So I know to some extent how my friends must feel about me. And that's why I don't bring it up.

My family knows that I have good days and bad days and they are so accepting of me when I can't join them for dinner or whatever else they have planned.

I have this theory that it's best just to accept what is and look forward.

I hope you are all having a pain free day!

Pat
Posted 5/17/2007 8:08 PM (GMT 0)
I want to copy all these replies and post it to my forehead :) Since most don't listen, maybe they'll read. I TRY not to expect too much (or anything) from others as well as myself. Being human sometimes stinks as none of us are perfect or handle situations perfectly. Best I can do is explain. They can accept it or deny it, I just hope they consider my feelings. I have lost many but gained some relationships back in this nightmare of mine. I might not have many choices with this disease but I have a choice in who I relate to. Over the years I realized some of the ones I lost are just scared. Scared of their own humaness and imperfections/infalibility, not so much mine. But I am also a reminder that there is love in all imperfect things and the value life offers. I feel sorry for those who look at life through fear and negativity. I feel sorry for myself when I do. This disease makes life hard, excruciating at times, but look at how much we have. I try my best to remind others that, yes, I suffer - we all do one way or another - but I am happy. I have been blessed with so much more than what has been taken away from me. I am so much more than LUPUS. Life and love are so much more (I just hope to be awake and in less pain through it). When I remind others of this they seem to relax and don't push as much. I think about how much everyone around me whines and complains. So what, I do it too. Actually less. I am a good person but human. My motto is if they don't like it then too bad. As long as I didn't actually do harm or behave in a mean way, then it is THEIR issue to solve- not mine. I will be here to support them :) but I won't be their dumping post. When you do the best you can and people are still angry, then you really have to question their motives and sensitivities. It is tough to feel roughed up by the disease and others just seem to go around poking at you for no reason. Find that happens a lot. Now I poke back, nicely of course. Or just look at them like their sick or crazy. Still haven't gotten to the point where I just smile and walk away. Hope to get there one day. Hugs to all - Kristin
Posted 5/20/2007 3:57 AM (GMT 0)
Kristin, I learen along time ago, that it dosn't matter what other people think if you are doing you BEST.

Once I had a talk with myself, because I was down on myself after getting an evalution from my superviser. He didn't like my work....well I was sitting in my truck and I here "who is he" I said "a man" Then a reply cames back "who am I?" I said "GOD" Then I here "that right I am GOD and if you are doing the best for me, then that is enough".

I am a superviser worst nightmare...Now...Because I just don't care about numbers...I don't have to be the best...I do what I can.

Don't get down on yourself...they are the ones with issues...
Posted 5/20/2007 5:23 AM (GMT 0)
Frank,

I needed to hear that tonight. Thank you.

xoxo emmie
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