Good Morning Kind Readers.
Recently it was explained to me that all I ever talk about is my illness and that I never have anything good to report when I speak to her.
This puts me in a quandary because I don't know who is being insensitive here.
Is is me? Because this is pretty much the case. I don't have any good news lately.
Every time I turn around something else is happening to me. Recently, it has been my back issues.
She told me that everyone has back problems and that mine aren't that special. Like I am trying to be "special." Lord knows how much I wish I wasn't "special." You see I used to go out every once in a while with a few of the girls on a Friday night. It was fun to get out and I really wish I could do that again. It was inferred that I have no motivation any more. I was given examples of other people who have this or that and manage to get out and even go to work.
If me having to sit on the floor two Saturdays ago in Pathmark because my legs and back were in so much pain that I couldn't support myself upright any longer didn't make me feel bad, this conversation did.
Is it her that is insensitive? As far as she is concerned, I am not the LuAnne that she once knew. I am not the LuAnne who made her feel better when she was feeling overwhelmed. I am not the same friend she once had. It was even brought to my attention that I was avoiding her for some reason.
Am I giving in to the distress of my illness? Am I using it as an excuse? Gee, am I crazy for thinking this way. Of course, a person like me who was very active before my illness came to live in my body, loves sitting on the couch most of the day. I love making plans to get into the shower because having a shower takes everything out of me. Who would not love to live this way? Oh and who loves to walk around with a cane and use the scooters that the supermarkets provide for those of us who need them? Aren't they just there for kids to ride on like a trip to the Go Cart Fun Center.
Yup, I like to live like this. It is my choice. When I was a little girl this is how I dreamed my life would be. I dreamt that I would nap during the day. I imagined that I would be unable to walk up the stairs from the laundry room. That laundry would pile up for days.
Little girls don't dream of their grown up lives to be like this.
What I dream about now is being able to hop in the shower, rush and get dressed and go about my daily life.
Why doesn't anyone get it? We can't even use the "Invisible Illness" defense for this dilemma because I look like crap.
You know something that is very funny. This same person (most people really) aren't able to cope with stuff that happens to them. They get a headache and it's the end of the world. Their doctor schedules a colonoscopy and they fret for days afterwards. Take to their beds right after the camera goes up their butts. Or, have a tooth pulled, capped or a root canal and they are complaining about the pain for days and days. Then they say to me, and you think you are in pain. Amazing.
I get remarks that are so bizarre that it blows me away sometimes. Here is one example...... Someone called and told me that they needed to have a fatty growth removed from their arm. Their doctor scheduled this procedure six weeks later. It was like a catastrophe. The doctor was lax. The doctor didn't know how much she wanted to get this over with. Who was going to come to her house and help her with her family? How big would the scare be? All this after the doctor told her that there was no reason to do this procedure. But because she whined and complained he scheduled it.
It amazes me.
I still haven't learned. I still haven't learned to just say I am "okay." I still believe that people really are concerned about my health.
The end result to all of this is that I am a nut job for believing all of that.
But, I still felt bad and my mood still changed. I still cried. I've already lost two friends because I am sick. I guess I am on the road to losing another.
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14 comments:
Luanne,
You're not a nut job. People who complain that you only talk about your illness, that you're not the same person as before are not your real friends. Real friends stick with you, whatever befalls you. You supported them through a bad patch, well, it's now their turn to return the favour. If they are not prepared to do that, they are just fair weather friends, along for the ride. Although I've only been reading your journal for a few weeks, I would suggest that this is a good opportunity to find out who your real friends are. Don't lose heart, keep fighting. Do what you can do, and try to do what you think you can't do. Maybe you can.
http://journals.aol.co.uk/pharmolo/NorthernTrip
((((LU))))
I wanted to cry reading this, as the last physical friends I had were just like this, as well as a few family members.
When they see my back brace on me, they can then "see" , Oh she must be in pain.
If there is NOTHING on a body part such as a splint, a cast, an ace bandage, etc. They just assume you are OK... you just look tired, you need to get some sleep, better yet put some makeup on to cover up your dark circles under your eyes.
It hurts when our "friends" treat us this way...you will learn that only your close family members that live with you will be the only ones who understand what you are feeling and going through.
Same goes for support forums and groups that suffer the same as you, we understand.
If it means you lose#3 friend, then it's either too much for her to deal with & understand, or she wasn't a true friend after all.
I no longer have a true friend to come go things with here, I couldn't even too if I had the energy. You'd think she would think I'd do anything to be able to alk far, I barely can make it through the grocery store.
I TRULY UNDERSTAND YOU LU !! I accepted you as my friend years ago when I came to AOL, when I had no more physical friends, you, Holly P and others were there and still continue to be there for me. And I will always be there for you too!
Your ebay selling will take off and make you feel whole again that you still can acomplish things and make money while doing it as well.
Love you!
Kathy
www.LupusMCTD.com
I lost one and definitely deal with people who don't get it all the time. It sucks. It is frustrating and I only share how I really feel with my best friend/sister. That is it. Not even Glenn... he sees it but sometimes even he doesn't get it, really.
The friend that I lost had ovarian cancer four years before I was diagnosed and survived the chemo and is now cancer free for 8 years. You would think that would help us bond... no, I 'just' have RA she had cancer...in her mind the fact that I even wanted her support at all in this struggle was a huge insult. People are weird, Lu. You never know who is a REAL and TRUE friend until poop like this happens.
I hear and feel your pain... and I relate...
be well,
Dawn
(((((Lu)))))
You're not a "nut job".
I am sure you are going to hear from a ton of us with chronic disease, because you have struck a nerve.
You sure did with me.
I fell under heavy duty criticism for quite some time by those closest to me.
And it made me want to just drop out of the human race. And for some time I did withdraw socially, because I just didn't have the enrgy to deal.
But, you know, I learned that life moves forward with or without us.
We feel frozen in lupus, and gosh darn if everybody else is just going about their daily business "immune" (pun intended) from your private suffering.
And those who stuck it out with me were actually trying to be helpful, not callous.
Granted, it is not helpful to compare surviving a stroke, and the loss of your life as you have known it to something like a backache, but maybe that is all your friends have to relate to.
You really can't know a person until you've walked a mile in their moccassins. And face it, sweety, not too many people are wearing lupus moccasins.
It's all about balance.
If you need to talk about a bad day, or new symptoms, or just venting your frustration...
your safe place is your fellow lupies.
And maybe your closest intimates who know you just need some validation and extra TLC.
The rest of the big world is not going to get it.
Because if they did... the world would be an incredibly better and more loving place.
When you suffer so much physically, the emotional price is high, but think of how much more compassionate (than you already were) you have become... because you really do know how to walk in someone else's moccasins.
(((((Hugs)))))
With much love,
Loretta
I am so sorry your always in pain and people just don't get it. Because of my dad being sick I do get it more. He couldn't do things. Everyday things anymore. I said oh come one. But he couldn't and I know he couldn't. It tought me a lot. So, hugs to you and your not a nut job.
http://journals.aol.com/am4039/life/
Hi; Dawn sent me over. I'm so sorry people are so insensitive to the illnesses of others and can't look beyond themselves to be compassionate to you with your ill health. You definitely are not a nut job and don't let anyone bring you down because it is their problem not yours.
betty
I understand where you're coming from. I've had a Lymph disease since I was pre-pubescent. My mother's had Rheumatoid since I was in high school. I have an ulcer/tumor/growth/galbladder issue/cist/alien in my tummy. Yet others don't seem to understand my pain 'cuz they're too busy with their own pain. Even if that "pain" is from an infected hair or an ingrown toenail. I've learned to find humor in these odd situations, along with all others that are presented to me. Don't forget the old addage: "Laughter is the best medicine." :)
You aren't a nut job, and this person is not being your friend. If your friendship was mostly based on stuff you can't do any more, there may not be enough in common to worry about losing it. Hang in there. Jessie (Dawn's friend)
Hi Luanne, I came by way of Dawn. You are definitely not a nut job. People are so lost in their own simple problems that they fail to feel compassion for those who are far worse off. Unless they've walked in your shoes, they have no idea what they are talking about. Shame on them. HUGS Chris
(((((Luanne)))))) Dawn asked me to read this and I am so glad I did. I'm sorry you are having to go through this like most of us do with chronic illnesses. It is not you sweetie, it is the rest of the world that just does not understand what we live with on a daily basis. They cannot understand chronic, unrelenting pain and fatigue. Like you said they don't see a cast, brace, or stitches so we must just be exaggerating or not trying hard enough. If they only knew how much effort it took to take a shower or sometimes to just negotiate getting a cup of coffee, they would change their tune. Unfortunately only us that deal with it on a daily basis understand. I have lost contact with most of my pre-RA friends but I have made some really super new friends like Dawn since RA. The comments from others still hurts or amazes me at times but I always have my 'new' friends to turn to for comfort and support. I hope you are able to find the same. Try to remember that it is not you but others who just cannot or refuse to understand.
Many hugs,
Phyllis
don't let what others say get you down!! You have great friends here who love you and want to support you! Linda
Well, Lu, what kind of nut will you choose to be? I, too, am a nut job, if I go by your definition. I will be a Pecan, that gets used a lot, that's me! What can I say, but I know how you feel. I have dealt with my illness since I was in my early 20's and my doctor didn't even believe me, but I am now 61 and I guess I am validated. I have pain medicines that don't really take away more than 40 to 50 percent of my pain, but I take it and I'm glad I have this much. Nobody can understand us unless they are one of us. I quit expecting it long ago, even some of my family judged me. Maybe it's because I don't give up easy. I wore a back brace to work for months. One of my favorite mottos is "JUDGE NOT LEST YE BE JUDGED." I know how it hurts and I would never want anyone else to feel that bad. You can wave your lab work, x-rays, c t scans, results to procedures, hospital records, a list of your medications and some people STILL have a problem. I even tell myself it's alright to stay in bed today, it's o. k. that you can't clean house. Can you believe it? I let other people's judgement of me even affect how I think and feel! Forget it, we owe them nothing, let them think what they want, we can't change them anyway. "TO THINE OWN SELF BE TRUE!" AND, shopping at QVC helps a whole lot! I treat myself cause I'm the only one that will and I know what makes me feel better. Lu, find something that makes you feel good about you. Even though I don't go any where, I put make-up on when I feel like it. I wear pretty lounging clothes that don't look like "sick" clothes. And honey I smell good from bath wash and shampoo, and perfume, and scented lip gloss! This is just me, you know what works for you so do it! To hell with what anybody else says about us! Why is it some people feel like they
Oh honey I understand how you are feeling and why you feel this way.Lupus is not kind and people don't understand.We didn't ask for this diasese and what it does to us.My house is a mess and I have laundry piled up to....so don't feel bad your not the only one.People are very insentive to this diasese and can be very unkind.I have lost friends to.I understand waht you are saying about when we were little girls that we didn' dream of having Lupus and now the dreams we had about growing up to be something different are gone.I understand about everytime you turn around something else happens to you.I go thru the same thing.I am now on a walker.I wish I wasn't "special" either hon.We have to save our energy for other things now like taking a shower.It wears me out to too take a shower.No hon you are not using your illnessfor a excuse.We can't help we have lupus.I've lost friends to because I am sick to.If you need to talk I am here for you!Take care of yourslf.
God Bless,
Brenda :-)
hi, Oh! how i know this routine, over the last 31 years i not only lost my friends but even my mother looks at me as if i were lazy. maybe i didn't complain enough, for a long time i just kept saying, i am ok, but enough is, enough. i have a right to say oh that is painful. i know how you feel and your words came from my own life, i worked very hard on having a positive attitude and be a rolemodel for my son. the jury is still out on the whole thing. cry, yell, throw things, complain, wipe your eyes and find something funny!!!!!!!
journal@aol.com/iminntoo/enlightenedbylupus
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