Senior Contributing Member
Registered: 1448900379 Posts: 642
Relax....you're doing just fine.
Registered: 1458419032 Posts: 2
Thank you for all the responses. You provided great guidance on support. What about tactical help - what lifestyle changes are Dr's encouraging those with Lupus change? And how can your family support those changes?
Registered: 1440893668 Posts: 16
The best book I have read is Lupus the First Year. It is a very quick and easy read but offers a lot of insight into the disease. My husband and married daughters both read it and it has been good for them to learn what I deal with every day.
Registered: 1462937147 Posts: 1
I have learned a lot through your posts.
Senior Contributing Member
Registered: 1418247040 Posts: 3,376
Sorry your post wasn't answered. I am surprised the Walmart greeter missed this!! What brings you here? __________________ When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies.
Registered: 1458600036 Posts: 26
Ken's looking into bars in the bathroom for me lol OMG I thought you meant to drink. Was gonna say, I could use that. Sign me up. XD Help when it hurts too badly to walk I'd say. Also don't tell someone "Oh you will feel a lot better soon." I know like in the case of my mom she says it to be nice, but it is also a LOT of pressure for me. Then I cry when I am not better right away. Just be there for them, tell them how you are still glad to be around them. Probably the best thing I can hear when I feel like I am burdening everyone around me is that I am loved anyway. Never gets old.
Registered: 1477039174 Posts: 2
First things First
Try and understand if you have a cold a person with Lupus will have that cold for a month. If your bones hurt a person with lupus is probably on a stronger pain medication The worst response ever.. Is, " but you were fine earlier" Be caring Be Supportive Please don't ever give up trying to help...
Registered: 1480292470 Posts: 13
Bathroom bars are great. We've used them in three houses. We moved to a new house shortly after my wife's Lupus diagnosis. (She had three previous autoimmune diagnoses.) Our current house has a long walk in shower and does not require either a curtain or door. It has bars on two walls, and my wife also uses a moveable shower chair. I use the bars as well. (We both are 79.) I expect to add bars at the toilet, but right now the vanity, which is next to the toilet, provides sufficient support. It is a blessing to be able to have some of the features that make it possible for us both to continue to live in our own home.
Registered: 1480891313 Posts: 3
Having a bottle of alcohol gel hand sanitizer was a big thing with my mum's lupus. It meant that we could just wipe things down when we had colds so we didn't give it to her. Having life as normal as possible really helped her mentally. Just small things like volunteering for chores before being asked so she wasn't frustrated about needing to ask for help with simple tasks, covering an area outside so she could get out of the sun, and buying her long sleeved shirts to protect her while outside or driving.