What's too hard? Just because you have lupus doesn't mean you can't be all you can be in this life. Nothing is too hard! Nothing is beyond your reach! Stop saying how bad you feel, get up, get out and do something in spite of the pain. I know it hurts, I know the pain is intense but you HAVE to get up and do something and prove to yourself that NOTHING WILL STOP YOU FROM LIVING! Push through, cry through...Just Do! #LupusInColor
thats great motivation-but somtimes "whats to hard" seem incensitive-I also applaud that you are doing something about this in your way. We are all different and it is hard life deals some things we learn how to be couragouse and stand still sometimes at the same time. Lupus hater.
This sounds like an athletic, competitive type of person, which I have never been. I'm a quiet, sensitive codependent type that hates all forms of sports and formal exercising. hahaha
I fight, but it doesn't quite sound like that in my head.
Nice thought, but it's a destructive path that I took for 20 years and caused my heart to stop and multiple hospital stays. I'm assuming you are not at the stage yet where your body won't allow you to do EVERYTHING. I believe in saying that we should do all that is in our capacity to do, but when I look at the picture above, I realize that he is not sick. He does not have unfailing heart and organs, he can breathe just fine, he will not cause his immune system to lay him out flat after physical exertion. But after 40 years with lupus, it's just NOT possible to do all that I want. When you go to a store and they UN-INVITE you to ever go back because you've passed out there once too often, when you sweat like a marathoner when your heart rate goes to 150 after a few steps, its just not wise to push yourself literally to death. We who suffer more severe lupus know how important it is to PACE OURSELVES, and not go past the point of collapse. If we don't take care of ourselves, how can we take care of our family members?
I agree with the philosophy and and ascribe to the belief that you are only as disabled as you allow yourself to be. When I was confined to a wheelchair I still cleaned my house and went outside in my WC to garden. I couldn't do all the things I wanted to but still could do something. Often it is just finding a new way to do things. Moral of the story is I guess to not let this diagnosis be your 'death' sentence. You may not be able to do all you want but you can still do
Well said Sheila W....I wish I had your brain. ; )
Sheila W. said:
Nice thought, but it's a destructive path that I took for 20 years and caused my heart to stop and multiple hospital stays. I'm assuming you are not at the stage yet where your body won't allow you to do EVERYTHING. I believe in saying that we should do all that is in our capacity to do, but when I look at the picture above, I realize that he is not sick. He does not have unfailing heart and organs, he can breathe just fine, he will not cause his immune system to lay him out flat after physical exertion. But after 40 years with lupus, it's just NOT possible to do all that I want. When you go to a store and they UN-INVITE you to ever go back because you've passed out there once too often, when you sweat like a marathoner when your heart rate goes to 150 after a few steps, its just not wise to push yourself literally to death. We who suffer more severe lupus know how important it is to PACE OURSELVES, and not go past the point of collapse. If we don't take care of ourselves, how can we take care of our family members?
Yes, we can still do something and we should do as much as possible, but it's not true that we can anything. I sure can't run a marathon or work for more than 2 hours with my limitations, but I can comfort/encourage people online when I am up to it.
poobie said:
I agree with the philosophy and and ascribe to the belief that you are only as disabled as you allow yourself to be. When I was confined to a wheelchair I still cleaned my house and went outside in my WC to garden. I couldn't do all the things I wanted to but still could do something. Often it is just finding a new way to do things. Moral of the story is I guess to not let this diagnosis be your 'death' sentence. You may not be able to do all you want but you can still do
Thanks Artchick! I needed that. Been feeling kinda brain dead lately.
artchick said:
Well said Sheila W....I wish I had your brain. ; )
This was not meant to be a negative. It doesn’t mattee what you want you can do it. It will be hard but of course anything you do must be within reason. Sometimes our just d ois getting out of bed. Othertines it may be just to get lifted out of a lupus fog. By no means was this posted as a negative or slight or as an insensitive statement
Lupus in color,
I know you didn't mean it to be negative or insensitive, It just hit a raw nerve with we who would love to do everything, but certainly can't. Now that you have replied again, saying that we might only be able to get out of bed or out of a lupus fog, it's a lot more achievable than your first post where you seemed a bit naive about how limiting lupus can be. We can only push to a certain point. When pain hits 9 or 10 on the pain scale, you can't even think. I just thought maybe you are one of the lucky ones who has very few symptoms so far. If you are, then yes, you can tell yourself to do just what you posted.
Peace, Sheila
Lupus In Color said:
This was not meant to be a negative. It doesn't mattee what you want you can do it. It will be hard but of course anything you do must be within reason. Sometimes our just d ois getting out of bed. Othertines it may be just to get lifted out of a lupus fog. By no means was this posted as a negative or slight or as an insensitive statement
Poobie,
that's great that you were able to do all that in your wheelchair, but I have to disagree about a person only being as disabled as they want to be. How about people who have had strokes or who are autistic or have cerebral palsy or are flat in bed paralyzed? Did they choose to be that disabled? If you lived in an apartment that was not accessible and didn't have a vehicle to take you in a wheelchair, that would affect how mobile and social you could be.You are probably blessed with a ramp or one level property and the strength in your arms and whole body that it would take to garden in a wheelchair. It just hurts to see people say "I did it, therefore EVERYONE can do it." It's just not true.
Peace, Sheila
poobie said:
I agree with the philosophy and and ascribe to the belief that you are only as disabled as you allow yourself to be.
At anytime any one of us could be at level 1000 on the pain scale. My statement wasn’t naive wasn’t intended to even sound that way. We are all in it together and although we suffer differently we share the same pain in different ways.
Lupus in color,I had surgery this morning on my wrist my wrist bone was eroded away so bad it was so close to just breaking,they did not borrow in bones from my hip,which is standard for this kind of surgery,but I’ve lost so much weight,he said we had to go to the next level,it’s my left wrist,my right hand only has 2 fingers on my right hand that works,my thumb and my pointer,I have 0 feeling in 3 fingers and can not hold that hand out for change,I can’t put my fingers together the change would fall through…my left had all the eroded bone scraped out,as well as the cartridge,filled In with plastic and a titanium plate put over the top of that,10 weeks to heal,and I will never bend that wrist again,also I have major heart problems,I take 11 meds 3x a day…I live in the country,I’m a huge tom boy,I have the clackamas river running right through our town,I love to fish!!! I can no longer do that,I was raised on horses,can I lift the saddle? NO!!..im trying to learn new things to take the place of my old life…it’s not true you can do anything,and believe me,I have tried…I’m stubborn type A,control freak,OCD,I like all my ducks in a row…So for yrs I have challenged my lupus so much,it drives them my family crazy,sitting still is a challenge for me,because my heart is always going into these crazy tac modes,also I was a huge cross country runner,my tennis shoes are retired…my knees are done,it’s the one thing on my body that was not caused from my lupus…it’s from yrs of running miles…if you have any fabulous ideas of things you can do with limited hand use,I didn’t even get turned down for my social sec…I got it 2 months after applying…that gives you a huge idea were I’m at with my lupus…I’m a fighter,but I’m so very tired,My body is a tired I just can’t explain!!..celeste
Thanks for starting this discussion LupusInColor... we all know our own limitations what we can and can't do... Attitude makes all the difference for each of us. Last year I was applying for SSDI, this year I'm able to work again. I wouldn't be able to do that if I had given up. I had to make changes... and its an adjustment right now. Everything in life is an adjustment, but don't give up.
I believe the moral is to not let this illness stop you from living- I too got disability in 2 months- 2 major joints already replaced and 4 more so severely eroded they also need replacing. I used to ride horses but no longer can BUT my friendhas his horses here so I can still enjoy them. When I could no longer ride I switched to showing dogs and one of my dogs made it all the way to #1 in the nation. Right now I can't show but have others showing my dogs for me- I can still go watch and revel in their successes with MY dogs. Do I miss being able to do all these activities myself- of course but it doesn't mean I need to retire to my bed as a helpless blob. Enjoy what life you have - there are still things to enjoy and you can still participate. Just in a different way
celeste said:
if you have any fabulous ideas of things you can do with limited hand use,I didn't even get turned down for my social sec..I got it 2 months after applying..that gives you a huge idea were I'm at with my lupus...I'm a fighter,but I'm so very tired,My body is a tired I just can't explain!!..celeste
Poobie,my horse had to be put down a couple yrs ago,he was 34,he was a black,my Vic’s bar none,my girl friend raises little miniature mustangs,they are so cute,my husband gets upset with me,because I never rest,I always laugh at him and say,people die in bed,Ha!ha!I have never used my lupus as and excuse for anything,I’m learning to overcome and adapt to all the challenges I face with lupus,I’m stubborn,I do things I have no business doing,like driving right after heart surgery,driving my own self to the ER and just not say anything to anyone…can’t keep a good women down!!some is pure stupidity at times,but I like to do things myself…I’m very prideful,Another thing I’m working on,Asking for help when I need it…that is huge for me!!
Sounds like a QH- several of mine were blacks- my last one died a few years ago My friend now has Arabians here- beautiful animals. I'm kinda like you- no matter how bad I feel I still get up and dressed every day Laying in bed only makes you feel more ill
Wow Ann, that was way back when her 2 books were the ONLY books in the library about lupus. I read them too. It sure is frustrating that we suffer more than people who lost a limb, but like you say, our accomplishments are invisible. We are only spoken to about the things we should be doing, we don't get credit for what we have pushed ourselves through and endured.
The third book that came out about lupus was 'Living well with chronic illness" by Kathleen Lewis, 1982. I wrote her a letter and got a reply and felt so honored to have that, then just 10 years ago I met her online and we became really good friends. She got book #2 published about 5 years ago and book #3 is on the press right now and she's taking pre-orders for it.That one had more practical advice about how to think and get through the emotional turmoil of lupus. The next 2 books are Christian based.
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As stated this was not a negative post. We all go through Iissues some more than others at different times. The purpose was to encourage and inspire to live beyond lupus. To not keep the focus on what we can’t do but on rge things we can. Life with lupus comes with so much it’s never easy.Thanks for your comments and wishing peace harmony and some relief.