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World According to Lupus
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My Mum Has Lupus And WILL NOT GIVE IN?!

Hello There My Name Is Paige,

My Mum Has Been Suffering From Lupus For About 10 years now, she's in agony everyday i just want to be able to help her in any kind of way possible. she is currently on steroids the help her walk, and she wont give in to a scooter.

i am doing all research possible from the uk to outside the uk.



1 Reply

Prednisone or steroids is sometimes a necessary evil. I know for a fact that it has saved my life. It also does give a form of roid rage, at 40 mg after my hospitalization my mind was a wreck, I was hard to deal with. I still am... :) and some people would either trigger angry responses, make my anger worse, or not trigger anything. For those that did not trigger anything, those are the people who I am most grateful for. The rest, honestly, screw them. Seriously. I personally cut them out of my life. And you know what that is something that has to be done at times. You are only given one body, your body is your sanctuary and you can't let outside factors screw that up for you because usually in life, there is no undo button. So, for your mom, I am not sure about her steroid dosing but keep in mind the higher that it is, the higher her temper has the potential to rise. The things that did not piss her off in the past, could trigger a response now that she is on the drug. Sometimes it is really hard to deal with people on steroids. Also, keep in mind that it is better for her to let it out. It can actually hurt mental health holding anger in and can lead to other health problems related to stress. People on steroids don't mean to hurt other people by the things that they say or do, but it DOES happen often depending on the dosage. Learn to take what she says with a grain of salt. Again, I cut out the people who couldn't handle me and honestly I absolutely do not regret those decisions. I am somewhat at a better place because of it. I know that I have caused stress on the people who have stayed by my side and for that I am forever grateful, for those that triggered my anger with selfishness, those people are OUT. You have to remember, you are the healthy one. You can handle stress better than a sick person. Your stress does attack your body, but it does not attack your body the same way that stress can attack someone with Lupus. In my case, Lupus attacked my brain and spine and almost made me paralyzed. If I were your mom, I'd be really pissed off that you wanted to put me in a wheelchair, especially if I have been capable of walking all my life without any problems. I would feel more useless than I already did. I would hate the lack of independence, and I would hate that you would look down on me with pity of any form. Not sure if this would help or not, I might suggest a cane first. That, or potentially show her how much fun a wheelchair can be by taking her alot of places. If you can get a handicapped sign that might be cool. But again, disabled people don't like to be labeled as disabled even if they realize they are. They think you're a BUTT for even bringing it up or showing them or reminding them. Sometimes ignorance is bliss but it can also hurt you if you're not aware of the potential harmful effects of not being aware of the harms of sunlight etc. At amusement parks I think you get on rides quicker if you are in a wheelchair, keep her out of the sun and probably try to ease her into it. Most people enjoy spending time with their kids or parents even if it is spent fighting, it means that you care. That's what we need. Watch your expressions and facial features and sighs, we catch those really quick. You do it not realizing it but it actually affects us. And yes I talk about me, me, me alot now but I used to be the opposite before all this. Hence how I got the Lupus, attempting a different more selfish approach that has been working for me lately. I used to be a doormat, that gave me lupus. Now I make people bow down to me. Yes, hard wording but... xD