Just a friend.

[Liz D.]

ThatGuyJason,

As far as a ride in the car, I can't imagine that would be a problem.  As long as I am a passenger, I am okay.  If I do too much driving myself in one day, I am worn out for the next.  For some reason, driving a car takes a lot out of me.  Also, air vents have to be pushed away from us as our eyes and nasal passages are already dry enough.

As far as a motorcycle ride, well that sounds like fun.  But again, a helmet with a shield over the eyes is a must as the wind would dry our eyes our more than they already are!!

Liz D.

[ThatGuyJason]

I appreciate all the input.  I will hold off on the motorcycle ride.  While I do have a full face helmet with a shield, I would hate to end up somewhere and find out that it isn't working for her and have her suffer the whole way back.

I think a road trip could be fun.  Something that does take a lot of energy, but still able to see things.  And honestly, I enjoy driving.

And once again I thank everyone for their kindness and acceptance of me.  I am working on learning all I can and plan on buying a few books on the subject here soon.  Ones that have recieved good revies from y'all.  I appreciate all the support. 

[jordozmom]

I think just what you are doing here is exactly what she needs.  You are trying to understand and empathize with what she is going through, and that to me is extremely important. 

I say be flexible and understand that she may have to cancel plans, maybe even last minute, and that an hour or two at a time might be all she has in her.  Let her know it is ok to go without hair done and makeup on because at times I have to sacrifice that to save the energy to go do whatever I am doing.  Crazy, I know.

And understand this - with SJS everything is about balance.  Unlike most people we don't have that extra "juice" to go out or have fun or get things done on the evenings and weekends - we are lucky to make it through the day at work, etc.  And I guarantee you any time she does go out or have fun or get something done, any time she does that something extra, she will pay for it elsewhere.  If she does something with you until 10 p.m. on Sunday, likely she won't make it to work on Monday, then she'll feel badly about missing so much work and not getting her responsibilities done.

[ThatGuyJason]

Well, the good news is that we are not dating. I am not looking for any of that. She does not need to get all dolled up for me. I met her in jr high, and still see her as the cute, quirky, nerd she was back then.

And she has Mondays off, while I don't, so that should never be a problem either.  The fact that I live a little over an hour away, I know that I need to double check before heading out or risk disappointment.  Not disappointment in her, just that plans may have to change and the things I hope to accomplish that evening may not be.

She is a good hearted gal, who strives her best to put on a happy face and please everyone.  I hope she knows that she doesn't have to do that for me.

[hikerknees]

Welcome ThatGuyJason
This site has been very helpful and I too appreciate your interest and support.  Just wanted to say that I find car rides are fine, I just take more frequent breaks to move the achy joints and to put in extra drops, especially if I am driving (I find that prolonged focusing is very drying).  Driving long distances is also hard on my neck, so I do relaxation exercises every 10-15 minutes.

[ThatGuyJason]

I appreciate the advice.  If I take her for a trip, I will be sure to include some pit stops to get out and walk around a little bit.

[irish]

Wow, it is great that you are trying to seek out info about sjogrens and knowing what to do for your friend. Be aware that sometimes she is going to feel so exhausted that she can hardly stand up and can hardly talk. If you ask her how she if feeling or to explain her health issues at this time you won't get much of an answer. It is beyond exhausting to even think of talking and even thinking whe one is this tired.

By the way, when a person is this tired sex is not even in the equation. The fatigue is so bad that a person can almost break down and cry. When there is fatigue there is often body/muscle/joint pain that is hard to deal with. There are also many time aches and pains in the tendons, ie., achilles, carpal tunnel, etc. Then there are the sharp shooting pains that can almost take your breath away. Some people have these and some don't.

Remember that our autoimmune system is trying to kill us off. It identifies our body as a foreign object and sends out all those white cells and set up inflammatory responses that are painful and many become health issues. Just ask her what she wants to do---many times planning to much ahead of time is not feasible. Have to wait until the day.

The only way I can explain the fatigue is that I will feel like all of a sudden there is a sudden suction that makes my energy just drain from my body---down to the very core of my existence. It is unlike anything I had evey experienced in my early life.

You are a good person to make this effort and I hope that life for you and your friend will be good. irish

[ThatGuyJason]

I appreciate the advice.  And I appreciate the heads up about sex, but that isn't a problem.  We are just friends.  Not going to be any genital gymnastics going on.