PDA

View Full Version : Switch up



Lupo
11-10-2008, 07:21 PM
Ok this may sound odd and/or dumb. But I've noticed people saying :Lupus ain't so bad or Lupus is horrible or just being neutral on the matter. Am I missing something here or does it depend on how you look at the big picture?

rob
11-10-2008, 08:00 PM
Hi Lupo,

Welcome to our group. Your question is neither odd, nor is it dumb. I'd like to give you my take on the question. I was diagnosed with SLE in 2004. I have "flares" on an ongoing basis. I have two or three good days, followed usually by the same number of bad days. Sometimes the bad ones really hurt, somedays they can be devastating. And my good days range from tolerable, to great.

Looking at the big picture can be awfully hard. For me, neutral, horrible, and ain't so bad are a state of mind that is dependant upon my physical condition/symptoms from day to day. A few days ago, I suffered one of the worst flares I have ever had. The pain was constant, and intense. I was literally stopped in my tracks, and ended up giving every bit of stamina I had left to the task of getting through each wave of physical pain. Those were really bad days.

Today, I'm almost tempted to say Lupus ain't so bad, but I know better. Today, my symptoms are not bad at all. Tomorrow, well, I don't know. I could get up and feel OK, blah, or like hell. I view my world on a day to day basis. My good days are usually upbeat and positive, my bad ones are mostly awful. If I attempt to look at the bigger picture, I will most likely be interrupted by Lupus and an uncertainty of what is next, what will I feel like tomorrow? To say it puts a damper on your plans from day to day would be an understatement.

There are many here who subscribe to the "One Day at a Time" approach. Savor your good days, endure the bad ones, and know that tomorrow could bring either one. Anyway, I hope this makes a bit of sense.

On that note, I'd like to say once again, welcome to our group. Make yourself at home, and know that there is no such thing as a dumb question here.

Rob

Saysusie
11-10-2008, 11:01 PM
Can't top that answer!!

Lupus affects each person differently. Some may have a very mild form of Lupus, some may have a serious form of the disease and some may have a life-threatening form of the disease which has adversely affected their internal organs and/or opened the door for other diseases to attack their bodies.
So, it depends upon your state of mind regarding your symptoms; or it may depend upon the type of Lupus that you have. As Rob said, many of us take the "one-day-at-a-time" approach when it comes to Lupus..savor the good days and endure the bad ones!

Peace and Blessings
Saysusie

KathyW1958
11-11-2008, 03:00 AM
Hi Lupo,
I don't think that your question is dumb. I have had Lupus nearly all of my life. For me I don't try to look at it totally negatively, but there are times when it really gets to me. I am just now getting over a severe flare, but I am now doing better. You will have good days and bad days. Lupus is cyclic is what my doctor told me, where you have flares and remissions. To me in my personal opinion, this illness sucks big time. Some people like Saysusie said have a very mild form of the disease and can eventually come off from the medications and be fine. I don't know what else to say.

Hugs,
Kathy

Oluwa
11-11-2008, 02:51 PM
For me...it sucks, it is horrible but I endure. It is all about the given day and how I frame it...

The same pain, a flare one day I can hit it head on, find joy, work it out..and other days that same pain can make me feel like I am going in a downward spiral...even something as small as a stubbed toe, a paper cut can cause tears and other days I can dip it in salt....

It is the chronic, nagging, gnawing that wears me out...

I believe what is key to maintain some sort of stability, normalcy, ability to cope is to keep a routine, eat right, exercise, have a healthy support system.

Surround yourself with people who care...listen to your body, participate in your health care with knowledge and have real conversations with your doctors....

Seek some sort of spirituality. Fill yourself up with good healthy food, wonderful sounds, beautiful colors, soft textiles... aromas.

Some days, more often than not I have the ability to wait it out, like a staring contest, who blinks first. Many times I win...and other days not so lucky. And when I am not so lucky I am a sore loser.

That is me and my Lupus relationship..never loved it, never will but I can live with it, try my best. I have to, no other choice...when you have no other choice, you learn to make do.

Hugs.
Oluwa

Lupo
11-11-2008, 03:58 PM
It makes me feel orta "at home" knowing there are others that hare the same condition. It's definitely makes it easier to deal with.

rob
11-11-2008, 05:30 PM
It makes me feel orta "at home" knowing there are others that hare the same condition. It's definitely makes it easier to deal with.

I know what you mean Lupo. I think the only people who can truly understand what it's like to live with Lupus are others who have it.

jaideni
11-11-2008, 08:32 PM
Lupus also sucks for me. There is no part of it that I feel is okay. I feel like Im turning stupid. Its not the end of the world, but can be the end of the world as you once knew it. I think that some have adjusted to their new lives better than others and maybe thats why some feel that way.

mnjodette
11-15-2008, 05:55 PM
Lupo, I just wanted to welcome you to the group, and let you know that I'm like the others - there are days I could just curl up and never leave my bed and other days when I feel much like I did 'pre-lupus.' I have a friend with lupus who has been stable for a long time - really no flares to speak of. But, she stays on her meds and always 'works the program.' I don't think her experience is the 'norm' though - most of use are used to the roller coaster of lupus. Ride it up and be prepared when it takes you back down. I hope hearing from others that go through the same thing makes it a bit easier for you, Lupo. I know it helps me.

Jody