How Can Friends Help?

[Leigh]

I recently had an altercation with my best friend because I'm frustrated with having to keep up relationships while struggling with my health every day. They say I am cutting them off, but I'm really not. I've tried to make them understand and told them to come to the forum and read posts.

So, for this purpose, I'm asking you: "If your friends could do ANYTHING for you, what would you have them do?" Besides cure you of course!

I just said leave voice mails but don't expect calls back, and take my son for a weekend or clean my house! The main thing for me is to not expect anything in return. I don't have the energy to even think about it! I'm frustrated...How do you tell someone what this is like?

[jhjd]

I just said leave voice mails but don't expect calls back, and take my son for a weekend or clean my house! The main thing for me is to not expect anything in return. I don't have the energy to even think about it! I'm frustrated...How do you tell someone what this is like?

Maybe a better way to phrase this would be to express your physical limitations and work to figure out ways you can be there for each other without it being too taxing. Emails instead of calls, for example, may be less stressful. But it's honestly not okay to ask your friends not to "expect anything in return" from you for all their help. They're your friends- not your slaves- and they do have a right to expect at least a cheerful 'thank you' upon return of your son, and a sympathetic ear- even if you have to take a nap in the middle of the conversation.

The thing is that I'm worried about the misanthropic attitude expressed by your post. People need to receive and give emotional support to be spirtually healthy. It's natural to need alone time, but carrying it out too far results in isolation and depression, which will only make you feel worse.

Now, if your friends are just flat-out not understanding your needs, then there's not much you can do about it besides try to sever ties with them and find new friends. And maybe it's time to drop any energy-sapping mere acquantances you have. But you do have a responsibility both to your true friends and to your own mental health to try to make those relationships that you cherish the most work.

[SunsetParadise49]

I give my friends information on Dysautonomia. If they really care about me, then they will take the time to learn about it. Giving the DINET brochure is a wonderful way of educating them. After they learn about Dysautonomia, they may know a little bit better what they can do for you.

[Guest tearose]

Just speak from your heart.

Some times you know what you need and sometimes we just need to be able to speak with someone who can hear us on a compassionate level.

Tell them you are doing your best and only wish you were able to do more!

Thank them for whatever help or kindness they share with you...appreciate them because they too have their own "problems" and we should never assume we are suffering any more than anyone else! They may have deep problems of another type and any smile or kind gesture you give to them will be appreciated by them too! When I am able, I try to bake a batch of cookies for a friend or just give them a note hand written that says "thank you for being you and for accepting me with all my funkyness!

take care, tearose

[MightyMouse]

I always tell my friends how much I appreciate that they listen to me without judgment--and sometimes all I need is a listener who says next to nothing back other than be genuine. If they don't know what to say, they say "wow, I don't know what to say." ... and I always say back, that's okay, I don't expect you to.

Also, I tell them how much I appreciate that they continue to invite me to do things with them even though I have to turn them down quite often--and I ask that they please not stop asking because it makes me feel wanted as a friend even though I can't participate as I would like.

I make a point of trying to call back in a day or so of messages, even if just to say "i can't talk long, but I wanted you to know I've not forgotten that you called." --or I send an email to let them know I got the message and am too sick, tired, etc. to call back right now, but will do so as soon as I can.

Nina

[Leigh]

OK, I think "jhjd" may have misinterpreted my post. After rereading it, it's no wonder. It seems as though I'm someone who just thinks her friends should cater to her every request. Here's the story:

Whenever I would get into a conversation or email discussion with my 2 friends they would get frustrated because I never had anything positive to say. Well, I'm not so much in a positive mood since I can't even read my son a story, and I'm not one to fake it for others' sake. Anyway, they started asking how they could help and really all I can come up with is what I mentioned. I haven't told them that because of how it sounds (exactly how it sounded when I reread what I wrote).

I agree that isolating myself may be detrimental, but I have found it to be good for me. It helps me focus and gives me all the time I'm not sleeping, working, or going to appointments for my son and husband who are most important. I appreciate whoever said it not to act like I'm the only one having problems. That's good insight.

I just can't really find a way to care about others like I used to. I'm not wallowing, I'm just that drained.

~Leigh

[Lukkychrm42]

I would just like to see them, so for them to make the effort to pop 'round for a bit just to hang out is special. If you mean more in a day-to-day sense, it would help if every once in a while asked if I had an errand that needed to be done, or if I need something from the shop, or a quick task around the house that I can't do.

Now what would make me melt a bit would be bringing me a book or movie to borrow out of the blue... and not being upset if I'm not able to hang out then and there. Even calling just to say "how are you?" is pretty special.

These aren't things I actually expect- certainly not on a regular basis. I just mean that someone who does these things of his/her own accord is a very special person!

[corina]

leigh,

i am sorry that you're having a hard time. and i so know how hard it is to find a new balance. i know what you mean saying that it's hard to keep up with everyone and, ofcourse your family is your number one concern. i/we know how difficult it is to keep up with friends while we can hardly keep up with ourselves!

still, i do think it is important to keep friends and try to "do" something special with them. special can mean: go out for dinner/cinema/a walk/shopping but it can also mean: just sit and talk together, watch a movie together, being there for eachother.

i always say: everyone has his/her own backpack (rucksack?) and we don't know what's in it. but we all need people who care about us and to take care about. i found out that i don't have to be physically go out with people to enjoy ourselves, but they appreciate me to be there for them (meaning that i'm always at home, in my chair and able to listen eventhough i can't solve their problems). it is very important to me to know that, because that is MY part of our friendship and even while i'm sick i can be a friend.

hope this helps a bit leigh,

corina

oh and tearose is right: we need to have a place where we can speak from our heart. this is the best place to do so as we all understand and try to help.

[sally]

Hi Leigh,

I think I understand what you are getting at. I agree that it's best when you don't have any energy to spare....to focus on what is important, which is taking care of your son & yourself. I understand what you are saying and unless you are totally alienating yourself from everyone, I don't feel it is isolating yourself, I think it has to do with making adjustments to best meet your needs and responsibilities. A survival mechanism so to speak.

I have found over the years that many times people just do not understand about chronic illnesses and how they impact a persons life because they.....first do not understand the disorder or illness, or don't have the interest to learn about it or have never had to deal with such type illness before so they may not know how to react properly towards what is happening. It is a difficult balance for sure. If you have understanding friends that are givers and not takers, after explaining through literature or links to the site for information they should have a better understanding on how this illness impacts your life.

Then maybe you can make positive adjustments with your friends. One thing is maybe using a phrase that clues them in that you are having a really bad that day and they'll know how to adjust accordingly. In our family, we call it...."I'm having a really heavy gravity day" (after first explaining to them what it means such as extreme fatigue, weakness, feeling sick etc..) but just that simple phrase lets people know to allow us extra time to rest or get ready or if we have to bail out on something at the last minute etc without going into alot of drama of explaining constantly on the little details of what we may be experiencing at that particular moment or day. that in itself can grow tiresome having to always explain how you are feeling.

I have also told certain people, if I seem distant or quiet and aloof towards them, please don't take it personally, it is not something they have done it is just that at that time, I am feeling very poorly. It helps take the tension out of the situation and doesn't make the other person feel that they have done something wrong.

But, I think if your friends are expecting you to be a tower of strength and just perk up when they want to then you may have to spell out more of what you are capable of when you feeling at your worst. The ones that can't understand or don't want to will bail and the friends who care will stay. And, those friends are the treasures that you want to hang onto.

many blessings to you.

[goldicedance]

Leigh, You might want to read "When Bad Things Happen to Good People." It provides thoughtful insights about how to deal with some of the issues you expressed. Probably the most important is one along the lines that Nina and Corina pointed out. BTW, Corina, I liked the rucksack expression. I will pack that in mine and remember it indeed.

Lois

[jhjd]

OK, I think "jhjd" may have misinterpreted my post. After rereading it, it's no wonder. It seems as though I'm someone who just thinks her friends should cater to her every request. Here's the story:

Whenever I would get into a conversation or email discussion with my 2 friends they would get frustrated because I never had anything positive to say. Well, I'm not so much in a positive mood since I can't even read my son a story, and I'm not one to fake it for others' sake. Anyway, they started asking how they could help and really all I can come up with is what I mentioned. I haven't told them that because of how it sounds (exactly how it sounded when I reread what I wrote).

I agree that isolating myself may be detrimental, but I have found it to be good for me. It helps me focus and gives me all the time I'm not sleeping, working, or going to appointments for my son and husband who are most important. I appreciate whoever said it not to act like I'm the only one having problems. That's good insight.

I just can't really find a way to care about others like I used to. I'm not wallowing, I'm just that drained.

~Leigh

Let me say that I do understand you totally. I've been at that point (and I'm sure that despite my best efforts at acceptance, will be again) where you just want to scream at people to close the door, leave you alone, and let you sleep. It's incomprehensible sometimes that we're expected to deal with all the daily crap you have to do, PLUS this disease. Like when somebody says they're tired because they were out really late last night and you're thinking to yourself 'yeah, try being exhausted beyond all reckoning because you went to the grocery store, Miss Party Girl.' And so I'm not trying to lecture you at all.

But the thing I've found is that friends can really help ground you in the 'normal' world- if I'm stuck at home too long, I start dissolving into the world of sickness that makes me feel worse. Give them a chance to actually help you- you may find that they're true friends who are happy to do it and really take the burden off you and your family. Or, sadly they may not be- in which case they're not worth your energy. Good luck with finding it out!

[Eillyre]

You've already got some good advice from the others, so I won't reiterate. Some other thoughts, though....

1) Sounds like you don't do much together with your friends. Taking your son for the weekend is nice, but doesn't keep you and your friend connected emotionally. Maybe you can invite your friend over to read to you and your son -- your son can sit with you (special time with mom) while your friend does the reading. Afterwards your son can play quietly while the two of you talk. Maybe you and your friend could chat while you fold laundry (you take the socks and underwear if you can handle it). Maybe your friend could cook dinner for you and your family & then stay to eat it with you so you all enjoy good conversation together.

2) You said that your friend gets frustrated because you "never had anything positive to say." Well, that's certainly something that needs to change for all your sakes. Chronic illness can be very discouraging (I've been discouraged many times myself; it's a natural reaction), but if you can't find anything positive about life to share with others, you're missing a lot of beauty. It's something that you'll have to work out for yourself, but in the meantime, you might try finding ways to encourage more "positives" into your life.

For example, ask your friends more questions about what's happening in their lives. You will probably need to have heart-to-hearts about the struggles you face from time-to-time, but work on taking an interest in what your friends are doing or feeling. If there's something that one of them is excited about, share some of that enthusiasm to brighten your own life; ask detailed questions so that you get a very clear picture in your own mind of what the event or moment was like -- it's not quite as good as living the moment yourself, but it might give you a "mental voyage" away from your normal routine at home and your friend will probably appreciate the inteest that you express in something that she considers important. Avoid monopolizing your conversations with explanations of how bad you feel; your friend may want to be in "listening mode" sometimes, but not everytime you talk.

One of my friends is very interested in music of all kinds, so I've asked her to bring some of her newest CDs over so we can both listen. She's gone to some of the Broadway shows that she has soundtracks for, so listening to the music sometimes reminds her of something special at the show she forgot to tell me about.

3) Try to find new interests. If you can't leave home or read, maybe you can have your friend get a book from the library on a subject you're interested in learning about. She could read to you while you rest, or you could just look at the pictures and next time she comes, tell her about what you learned. Maybe you could find a subject that you're both interested in learning more about and learn about it together. When I was bedbound and couldn't read, I started looking at pictures of flowers in gardening catalogs that appeared in our mailbox. It was relaxing to see pretty things, so I asked my mom to get gardening books with lots of pictures from the library. You'd be amazed at how much you can learn from looking at pictures! By the time I was feeling well enough to sit outside to plant a pansy or two before resting, I knew over 100 names of the common (and not so common) flowers, their sun preferences, approximate sizes, etc. While I was not actively reading that information, my brain picked it up along the way from the captions below the pictures. Friends and family members who were interested in planting annuals or laying out a perennial bed would come and ask me for advice, which parked some great conversations and fun times.

Try having your son look at pictures in the books, too -- you could have him make up stories about the pictures (depending on his age, of course), while you add suggestions or questions here and there (names, events, plot twists, etc.). My 2-year old niece enjoyed playing that game with me when I was lying on the couch.

Does your husband have any interests or hobbies that you can learn more about? He'd probably appreciate your showing interest in them, too. Learning doesn't have to be a major production; my goal was to learn at least one new thing each day. One of my friends was an avid tennis enthusiast and spent time working with college tennis players; I had no interest in tennis for myself , but thought it important to attempt to learn more about this love in her life, so I began watching little snippets of matches on the TV. Sometimes I got tired of watching very quickly, but over a relatively short time my brain began accumulating information I heard or saw in those little 5-10 minute segments. Now I can ask more intelligent questions about the game and understand more of what my friend is talking about so excitedly. I even enjoy the matches, too.

Hope this helps!

Angela

[corina]

angela, you really are an inspiration to all of us. i've very much enjoyed reading your ideas!!!

corina

[Eillyre]

Thanks, Corina! You've all inspired me, too -- just trying to pass it on.

Much love,

Angela

[Leigh]

Thanks to everyone who took so much time and energy to reply to this post! I honestly didn't know I was in such a terrible place emotionally until I read everything. It's weird how this forum brings that out! So many times I wished I could just pull this post and make it go away. Ironically, I think that's what I've been doing to everyone and everything in my life. I bottle up so much so my toddler doesn't have to see it. The past week has made me blow up over and over and I think it's just spilling out all at once.

I feel more of a wreck emotionally, but I'm getting better physically. It's hard to be optimistic after struggling for so long. Anyway, you have all helped me tremendously! I hope I can do the same for some of you when you need it!

~Leigh

[persephone]

Hi Leigh,

Don't wish this thread away- it's a great resource for everyone who comes to this board because we ALL feel like this at times- it's what this illness does to us, no matter how sociable we are normally. We all feel like this no and again. I know I do, and everyone who contributed here has made a difference to me. Thank you.