[QUOTE=michellern;438186]My sister has been dx with rsd and has recently been deemed disabled at the ripe old age of 29! She doesn't live near me so I can't physically help her but I'd like to be there for her emotionally.
I have cfs, fibro, and possible ms so I understand pain but I don't think I can understand the intensity of the pain you all go through. Can you give me any suggestions on how to care for her over the miles? I want to be here for her in any way possible. I don't want to say or do anything stupid, she has enough on her mind already.
Any info would be helpful. TIA!
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Having just been diagnosed myself (1 month ago), I can say how much it means to me when people simply RESEARCH this disease and dig into the internet to get as much
detailed info as possible (I personally have had to BEG my family members to even read anything about it. Most still haven't and it makes me feel like they do not care or believe me). Then when you talk to her, you can be informed and knowledgeable and she won't have to explain every detail to you (which gets tiring). You'll already have an understanding of what she MIGHT be feeling and can simply agree or empathize.
Also, we have bad days and better than bad days.....that's about it. On her bad days, let her vent and don't give her platitudes or "maybe you'll feel better tomorrow" or crap like that (I get that from one of my family members......she means well, but it is maddening, and dismisses how I'm feeling right then). Just love her no matter where she is and let her be in her moment. She'll hopefully soon have a "better than bad" day and want to share that with you as well. Don't take it personally if she's crabby.....constant pain wears on us, it is scary, we feel out of control of our own bodies, we feel guilt that our disease is impacting every person we love, etc...
I've asked people to stop asking me "How are you today???" because it is a constant reminder to me that I'm not ok (or as well as they would like me to be). Rather ask, "How is your pain today" or something like that. That validates that we're ALWAYS in some degree of pain or discomfort and invites us to share details or symptoms as we feel them at that moment (as they tend to fluctuate day by day and moment by moment). I already find myself getting "used" to feeling like my foot is ice cold (even though it's burning up) or the ants are gnawing at my toes or that my muscles are twitching uncontrollably......it's always with me but I rarely mention that anymore unless it gets really bad. It's just become who I am now. Again......I'm only one month into it, as I mentioned. Get back to me in 5 or 10 years and I may feel differently!
Also, take mental notes of what she tells you she's experiencing. If she complains that her clothes are hurting her, surprise her by buying and shipping her some silk socks or silk sheets or a silk nightgown for her to wear. Have them gift wrapped for an extra touch. If she is sensitive to odors, send her unscented candles to light by her tub to relax in or pamper herself (and encourage her to do that) or flowers that don't have much fragrance to cheer her up (or is she's not sensitive to fragrance, send her the most fragrant!).
As you research this disease, you may find some products or teas or creams that have helped some people with RSD. Send one to her occasionally for her to try. She might not otherwise buy it for herself. These are just a few ideas (and man, I wish someone I knew would read this!!!) off the top of my head. If nothing else, send her a simple card every few weeks just telling her you love her.
Take it upon yourself to be an advocate for ALL of us with RSD and educate every person you can about the disease. Encourage people to donate money to the RSD foundation to hopefully find a CURE for this monster.
Anyone that is diagnosed with an incurable disease goes through grief. There are five stages: denial, anger, bargaining, depression, and acceptance. She may fluctuate between these stages by the moment, the day, and even through years. She may feel several stages at the same time. Understanding that will help you support her more.
I am so sorry your sister was diagnosed with this terrible disease and I am so sorry for your own health problems as well. This is a wonderful opportunity for the two of you to bond across the miles and develop an even closer, more intimate connection. I can tell you that she is very lucky she has YOU for a sister!! Best wishes to you both!!