General Supporters: ask a sufferer (symptoms etc)

[Snowflakes]

I guess I'm not great at explaining to my supporters what's going on.

I reckon we could bridge the gap, between supporters and sufferers' experience of the same symptoms.

I thought this was a thread where sufferers could weigh in. OP if I’m wrong, please let me know and I will leave. Really I don’t understand the point of a thread where sufferers are asked to weigh in and then we are given snark.

@EveHarrington we both struggle...both the sufferer and the supporter. My sufferer has a bad day and snarks on me; I’ve taken all I can for a day and snark back. I like @Swift desire to bridge the gap. :hug:

 

[somerandomguy]

Both jobs are tough. I don't envy my supporter having to deal with my sorry ass every day. On the other hand, I'm glad she doesn't have to go through what I do, either.

 

[OrangeJulius]

I do try to tell him if I feel off or if my brain is eating itself but I won't always share what's going on in there.

Yes! This is what I mean. The times when it CAN be identified then its great to share that nonchalantly. It creates more understanding for the times it CAN'T be immediately identified and/or the times that a sufferer is not in a state to be sharing. The little things help bridge the gap.

I am also someone that needs reminders. I can write a note that x activity is difficult...but if I see you appear to perform that activity with seemingly little effort for a year....I need to hear again that its a difficult activity. Just because I hear you say you love me once, doesn't mean I'm set from then on. My brain just doesn't work that way.

 

[Sighs]

I wish my veteran was that predictable. Depending on a whole heap of other things (like whether its an anniversary of an event - which half the time he doesn't realise until AFTER the fact - or whether he had a nightmare last night, or whether there is a smell in the air which is causing a flashback, or whether his physical aches and pains are bad today) activity XYZ might be no problem at all or completely impossible. Its not a case of me having a list of activities that he is ok with and another list he is not ok with. I'm always trying to devine which way the wind the blowing. It's exhausting.

 

[OrangeJulius]

I'm always trying to devine which way the wind the blowing. It's exhausting.

Ain't that the truth! Lol

 

[Sweetpea76]

I put a reminder on my phone that my partner cannot do X.

I then do X myself. Partner gets pissed if because I'm hovering/fixing/whatever.

I don't do X, and either he gets pissed off that "he has to do everything" or it cripples him. I then have to do X anyway and just deal with the pissed off fallout.

He starts to do X, and manages to do X for a period of time. Then one day out of the random blue sky he cannot do X. He is then pissed that I'm insensitive to his needs by not handling X.

Repeat the whole f*cking process.

This is why communication is key. It's not that supporters are forgetful, it's that PTSD is so f*cking fluid. Good days look different from bad days, and while there are some familiar patterns the specificity changes. We cannot read minds. What is painfully obvious to our sufferers is invisible to us. We can't hear the screaming in their heads.

If you cannot communicate, or at least make an effort to communicate with your partner, then you only have yourself to blame when they don't know exactly what to do.

 

[EveHarrington]

Whoa.

 

[mumstheword]

My guy and I are both sufferers, so that's a mixed bag of understanding and challenges.
I don't think I could be with someone who doesn't get it, because explaining stuff is really hard and scary for me, when you dont live it too.
Often, I .jusr don't want to draw attention to something that is a source of shame for me.

 

[Freida]

It's not that supporters are forgetful, it's that PTSD is so f*cking fluid. Good days look different from bad days, and while there are some familiar patterns the specificity changes. We cannot read minds. What is painfully obvious to our sufferers is invisible to us. We can't hear the screaming in their heads.

@Sweetpea76 that was amazingly accurate!!!! Sometimes I wonder why hubby just cant see what is going on with me, and other times I get pissed off because he figures it out before I do!

 

[Hojay]

To go back to the original post: I do have a question actually. What are sufferer thoughts on remission periods? What’s propping you up during that time and why do you think you’re better able to handle symptoms? What’s different, basically?

My SO is currently going through a remission period (not the first.) Stuff that would usually trigger him is actually quite ok, and when he gets triggered he’s quick to calm down. It’s both reassuring and freaking me the eff out.

 

[scout86]

We cannot read minds. What is painfully obvious to our sufferers is invisible to us. We can't hear the screaming in their heads.

I was actually kind of surprised to learn that my T can't read my mind either. :D It's not always easy to tell him what I'm thinking, but it does seem to help if I at least give him a hint. Or explain what went on in an email after I get home...

@Hojay , I'm not sure I exactly have 'remissions" but there are definitely better and worse stretches. And I think the old stress cup explains most of it. When things (life) are going pretty well, when I'm getting enough sleep, when I'm not trying to work my way through anything old and upsetting, life runs smoother. As luck would have it, I don't seem to be learning as much when things run smoothly, but it IS kind of nice to have a break now and then.

 

[Freida]

I agree with @scout86 -- when my stress cup is low I'm pretty good at dealing with my symptoms but when it fills up.... not so much.