What do I need to look for?

[Preywinder]

Hi all, there's this girl I really like, I know bit of an odd start, basically she has SLE and I wanted to know if there are any signs I need to look out for? She tends to keep it all under the radar, so if I don't spot it myself, I won't know anything is wrong until she is in an ambulance ... she is basically too stubborn to ask for or accept help, but at least if I can spot certain things I can be there for her if she needs me.

[1985mum]

You are a gem💎This girl doesn't know how blessed she is to have you in her life! It takes dedication and selflessness to look out for someone like that.

Please don't say she's stubborn. It is a dreadful feeling losing independence. She will be trying to hang on to it for as long as she can. She also may not want to be a burden on other people so just battles on. It is also painful when you realise that you can't just do the things you used to so there is the psychological/stamina side to it as well.

The best thing you can do for her is keep an eye out for the little things like if she takes a moment longer than normal to respond to a question, or is fumbling with a packet she is trying to open, or taking a bit longer than usual getting dressed etc. Getting her shoes for her when it's time to go out so she doesn't have to go and get them etc. Just little things like that. You can tell she is tired and needs a rest so make her feel pampered and put her on the couch with a book and hot chocolate. You can tell her hands are sore so just step in and do the next thing before she gets to it. I'm talking very generally here, not specific.

And when it comes to the snappy moods (if she has them), remember none of it is personal even if it comes out that way. These moods are uncontrollable and scary. My husband has learnt now to give me a hug when I'm like this rather than getting offended. Sometimes a hug is all you need.

Others on here will have good advice for you. This is just some of the things I've learnt from experience.

[Preywinder in reply to 1985mum]

Hi, thanks for the reply - So be a perfect gentleman at all times, right? Okay so stubborn is a harsh choice of word, but just for the record she really can't take a compliment... But she did give me a bit more information last night, actually made me a bit sad (I'm as emotional as a plank of wood, just sayin')

She mentioned having two secondary conditions which require opposite treatment, so that sucks, basically they get one of them under control and then the other one flares up, bit of a balancing act there... "Life Threatening Chronic SLE" and Pulmonary Hemorrhages too - Google is my friend here

Also mentions of infusions and steroids, I get the impression that steroids are useful for most things so that wasn't a surprise

Anyway, I imagine most people here are familiar with the conditions and I can look up what I don't already know - What I can't find on google is her personality... Turns out when things get bad (for example, when she's in agony and drugs herself up and hides away for a few days) she never tells anyone because she doesn't want people to worry - Now, I'm pretty sure I'd rather worry and know she'll be okay than not worry and not know until it's too late...

I guess what I'm wondering is, what can I do to make her feel like she can always tell me what's up and when? And if it takes someone to make sure the world around her doesn't grind to a halt because she's stuck in bed, how would I go about that? Thinking about it, as I'm typing this out I could probably get away with saying it as it is and then leave it there... not convinced it would stick though... I only live maybe 4-5 mins drive away so distance isn't an issue for me (it wouldn't be an issue if I lived 500 miles away, just to clarify, I'd find a way)

[Silvergilt in reply to Preywinder]

The best thing to do, really, is to communicate. Communicate, communicate, communicate. Everyone is different, everyone has a tendency to react differently so we could give some tips, but your best helper here is being observant and learn what her triggers are. My boyfriend has done this and now knows when the pain is starting to kick in sometimes before I do. I also tend to not want to bother him, and it was very difficult for me to open up when I was having a horrible time, because I didn't want to feel useless. This took COMMUNICATION - both for me to be able to say I needed help, and of him to be able to ask.

There's another aspect here too - please remember up to this point that she has managed to survive without you (yes, I know, but hear me out): don't baby her. She's not made of porcelain, and she doesn't need to drop everything just so you can pick up a cup or something off the floor. Don't smother too much with kindness. Again, this is COMMUNICATION; the Dutchman tried to coddle me a bit at first in the relationship and I snapped at him! I'm ill, true, but I'm not a baby - he had to learn that sometimes I need to do some things for myself, but when I got more comfortable with him, I'd ask for his help.

Your love-interest (hehehe) may have the same mindset: don't rush to pick everything up off the floor before she does. Let her struggle and do it if she wants to, and if she's really struggling, ask if she wants help, don't just grab anything out of her hands. She maybe has a coping plan already in place, so ask what she does, and maybe help with providing for a few quick meals when she's in pain (surprise with a takeaway, or if you're a good cook yourself, make dinner - and most importantly CLEAN UP KITCHEN AFTERWARDS). Tell her exactly what you just typed - you'd rather know and worry, than not know and feel like crap afterwards because you wished you could have helped. Offer to clean something when you're around (the Dutchman always cleans a portion of my house when he visits as he knows I can't manage on my own - he doesn't make a big deal about it, he just does it). Do some DIY, shop for groceries and put them away. It doesn't need to be an earth-shattering thing, but it does need to be within her comfort zone. Discuss it together.

I've found a lot of it is trust on my end: trust the person I'm with isn't just morbidly curious, trust the person I'm dating isn't just going to bail when it gets too tough, trust that if things fall apart I won't be completely incapable of functioning without help (been there, done this). Trust is earned, and you will have to reassure in words, keep communication lines open...and also walk your talk.

Good luck!

[1985mum in reply to Preywinder]

I love your attitude toward her. That in itself will rub off on her if it's consistent. She will realise your a rock and mean what you say. It all takes time. And it is tricky, especially if you're not actually living with her. The best thing you could do is just casually drop in at random just to catch up say, and get an idea of how she is at the same time. Saying "call out if you need anything" every time you see her will eventually register.

I suppose what I'm trying to say is generally just be kind and with time a dependance may evolve and you may find she'll realise that you really want to help. Even if it doesn't seem to be being received, don't give up.

The depressive days are all a part of chronic illness unfortunately! And really all you can do is just be there for her. A hug when it's needed. Moral support leads to physical support.

Hope I've been some help. I hope someone else replies so you can get more than one opinion.☺