The Unpredictabilities of Chronic Illness and Chronic Pain
Jo Franz 1/12/05

[HOST_Carolann] Welcome everyone again! Our guest for today is Jo Franz.
[HOST_Carolann] Jo suffers from Multiple Sclerosis, a very unpredictable disease.
[HOST_Carolann] She will share about how her own unpredictable life with MS, as well as how these different levels of unpredictability affect us all in our different situations
[HOST_Carolann] And how we can find help and help others when these unpredictabilities are a part of our lives.
[HOST_Carolann] Her ministries include writing, speaking, singing and song writing and is a trained counsellor for the National MS Society.
[HOST_Carolann] If you have not yet gotten Jo's handout you can do so by going to www.restministries.org/CHAT/handout_franz.PDF
[HOST_Carolann] Welcome Jo and thank you for being here. I will turn our time over to you.
GUEST_JO> If you've been living with a chronic Illness/pain, you know by now that there are unpredictable characteristics with which we live, no matter how chronic our condition. For instance, our family doesn't always respond the same way, the way we expect them to. A "successful" family deals with a sense of
GUEST_JO> love, commitment, accomplishment. We're in this together.
GUEST_JO> Like a pregnancy
GUEST_JO> But all families hit bumps in the road. when a family member pulls away in quietness what my be happening?
GUEST_JO> Do any of you sense your family members pulling away at times? What do you feel is happening inside of them?
GUEST_JO> I'm having trouble pasting, so please forgive my typos ::smile
[HOST_Carolann] no problem Jo
[HOST_Carolann] do you mean do we feel our family is ignoring us in some way?
GUEST_JO> yes, or isn't talking to us the same way
GUEST_JO> Perhaps they're even showing anger. What do you think they're feeling?
GUEST_JO> Has anyone felt their spouse or children feel guilty that they can do something that you can't?
[HOST_Carolann] well, it could be they aren't happy with the home situation in some way
GUEST_JO> It could also be that they'd like to take away our illness if they could.
[HOST_Carolann] my family don't feel guilty but they get annoyed in a way that I can't join in some activity
GUEST_JO> right
[HOST_Carolann] I think they feel sort of frustrated at why can't I do what they want to do
[HOST_Carolann] like going for a long walk
[HOST_Carolann] then I feel guilty I can't join in!
GUEST_JO> It might be a good time to ask how you could do something together
Alice> My husband is always saying he wishes he could take the illness away or take it on himself so I wouldn't have to have it.
GUEST_JO> I think our families show annoyance when they wish we could join them
[HOST_Carolann] your husband sounds like a compassionate man Alice
Alice> He also feels guilty when he has to go to family functions and leave me behind
GUEST_JO> Alice, have you told your husband that means a lot to you, because it shows he loves you
Alice> He really is!
GUEST_JO> It's also a time you could tell him thanks, but you wouldn't want him to have it!
Alice> I tell him many times a day.....he is a wonderful guy! Not many like him, i'm afraid.
GUEST_JO> You're blessed, so am I
[HOST_Carolann] you are blessed, Alice
Alice> Yes, I have told him i wouldn't want him to have it.
GUEST_JO> But Ray and I have to work at it.
GUEST_JO> When I have an attack and need IV steroids, I sense Ray's intensity growing--almost like anger.
GUEST_JO> But it's just because he feels helpless
Alice> Dan takes it all in stride.....i am the one who has to work at having a different attitude about my illnesses.
[HOST_Carolann] I guess we have to remember they are angry at the illness, not us personally
GUEST_JO> Ah, good point, Alice and Carolann
Alice> I think my "grown" kids are angry at my having illnesses that limits what i can do anymore.
GUEST_JO> I think when we notice our family members changing their reactions, the first thing we need to do is ask how WE are responding to it
Louise> I think it is hard for my family to see me in so much pain, and so physically weak.>
Alice> They expect me to be with their children (my grandchildren) the way i was when they themselves were growing up.
GUEST_JO> Right on Louise, it hurts them
[HOST_Carolann] yes Louise, they feel they want to do something to help but often can't
lisa705> I agree with Louise my nieces and nephew see me when I hurt and want to help me
[HOST_Carolann] Alice, I get that too - people want you to be like you used to be
GUEST_JO> Alice, I have learned I need to educate my family about what I can and cannot do, and that changes with my MS frequently
GUEST_JO> I say I have to grieve the loss of what I can't do. Maybe you need to do that too (Said in a loving way
[HOST_Carolann] yes they need to understand we are having strong feelings too
Alice> Oh, i have had to do that with my family and friends. Becoming a HK facilitor has helped me a lot in knowing the best way to help others accept who i am NOW!
Dana> As a Mom with young children, my heart bleeds, to see my children having a difficult time understanding my illness. All they see is a Mom unlike anyone else. Also, i believe it has given the kids a situation to build faith into their lives through Christ
lisa705> at first I did have grief but now I have learned to do what I can to help others
[HOST_Carolann] Dana that sounds like a positive thing out of this!
[HOST_Carolann] for your children I mean
lisa705> i was able to give ten years to my sisters kids and babysit them while I have my illness
GUEST_JO> Grieving means we need to feel the sorrow over loss. It actually speeds emotional recovery and adaptation in MS. I need to have a good cry sometimes, anyone else?
Mary_LouC> Oh, yes. A good cry does wonders!
Dana> I hope so--thankyou (many times it is very difficult for them--ages 5 and 6)
[HOST_Carolann] oh yes, I agree
GUEST_JO> MS keeps changing my life, so when I grieve I can let go of the loss and then help others who've been noticing that I'VE CHANGED
GUEST_JO> I think you can encourage your children, young and old, to cry with you
Alice> Crying is healing.....and God keeps our tears in a bottle....so HE is always aware of what we are going through....and i count on that.
[HOST_Carolann] that's a good idea! it's all about dealing with the real world and how are faith in God helps us through
GUEST_JO> Encourage them to know it's okay to feel sad that their family is differing
[HOST_Carolann] good advice Jo
GUEST_JO> AMEN Christians can grieve. It is OK
[HOST_Carolann] but they need to see it's not a scary thing to them don't you think? I mean kids can get scared easily
Dana> yes, Jo, wonderful ideas
GUEST_JO> Yes, we need to educate them by being tender and kind. Sometimes our family members need to get away and do something fun without us, something we used to do, and we need to encourage them.
lisa705> my little ones loves the medical things I use they like to play with them and they said it helps them to relate to disabled kids at their school
Alice> I agree with that, Jo.
[HOST_Carolann] that's great Lisa - makes it less scary for them!
GUEST_JO> Anger could be showing they need some space
GUEST_JO> Lisa, I'm excited about what your children can teach others!
Dana> The kids know our "normal" is our "normal". We may be different than other families, but we are a family. I seek to find the positives in how my illness affects them and we discuss it. We vent emotions, and continue on.
Michelle> My Dad reminds me when I'm being too stoic that it's time for a good cry. My husband went through a period of being very angry all the time, and out oldest daughter (16) is on meds and seeing a counselor for depression. But I have found that the stronger I cling to God and the better I deal with things, the better off everyone else is.
lisa705> they also love coming to the hospital to visit when I have surgery too and we watch videos
[HOST_Carolann] Discussing openly is the key isn't it Dana, that's wonderful!
GUEST_JO> I found my teenagers had a struggle visiting me in the hospital when I had a spinal cord injury on top of MS
GUEST_JO> They were more scared than I realized
lisa705> my sister just had my 18 month old niece on the phone to talk to me today and she loved that and I did too
[HOST_Carolann] they say the woman is the emotional barometer of the home, Michelle, so that makes sense what you say
Alice> Communication is so important....but i find with my HopeKeepers, they are hesitant to discuss their illnesses in a group....but they are paying off. I think that is wonderful.
GUEST_JO> Have you ever felt jealous of your family for what they could do that you couldn't? Honestly?
Alice> At times i have.
Dana> yes, I have
lisa705> sometimes I have because I can not travel like they do
Alice> We travel a lot because some of our children are in other states. they always want to "go and do' and i am left behind a lot.
GUEST_JO> I did. I had to ask forgiveness of my teenage daughter who could drive when I couldn't after the "stair dive" that caused the cervical injury and 3 MS attacks
GUEST_JO> Alice, can you get a wheelchair to use
GUEST_JO> My granddaughter loves to push me and she's only 6!
Michelle> Oh, yeah. I'll suddenly start crying when I see someone in a commercial running, because that's something I'm not allowed to do. And then I feel silly, because there is so much I CAN do.
lisa705> so does my nephew and he is 9
Alice> I tell them to go and i really want them too.....but then i feel lonely and bad staying back.....funny you should ask about a wheel chair....just got one this summer to take on our trips.
[HOST_Carolann] Michelle, I am the same - it's good to think of what we can do and not what we can't
GUEST_JO> It's hard to start using one, Alice, but it's worth being a part of the fun.
GUEST_JO> Do you all suggest things to your family that you can do together?
Alice> AMEN! I am so thankful that we decided to do it.....and i am not in the least embarrassed.
[HOST_Carolann] it will help the younger ones learn to "give"
Dana> Some of us are too weak to use a wheelchair to get out. That is where we have to lean extra hard on God while the others are out having fun. Actually staying behind builds my strength back, so I can visit when everyone else gets home.
lisa705> I am 36 and have to use a walker and that does not bother me
[HOST_Carolann] good way to look at it Dana
GUEST_JO> I agree
Louise> Ditto , Dana!>
Dana> thank you
Alice> I agree, Dana......and i still do stay at home sometimes.....i just have to see how i am feeling each day and go by that
Michelle> We plan dinner and movie nights (at home). It's on the calendar so no one is allowed to make other plans!
GUEST_JO> My MS fatigue changes everything radically when we visit others
lisa705> I have also had to live in a senior's highrise building since 1995 I was 25 at the time I moved here
[HOST_Carolann] that's a nice idea Michelle
GUEST_JO> Does anyone else have to adjust to this?
[HOST_Carolann] I deal with fatigue when others are around but I tell them I have to go lie down for a bit that's all
Alice> When we go visit..... especially if we have to fly.....i am down at least two days, minimum
lisa705> yes with my polio I get fatigued easily too and have to rest when I go out at times
GUEST_JO> Me, too.
[HOST_Carolann] somebody's spare bedroom
GUEST_JO> Does anyone get angry about that?
[HOST_Carolann] no, I have found they seem to be a bit embarrassed
lisa705> I have had most people be fairly understanding about me getting tired
Louise> I only see my sister and family once a year at Christmas - they kept going out so I could rest. I really battled depression then.
[HOST_Carolann] I guess it's not what guests usually do, right?
GUEST_JO> I need to stretch out spasmed muscles constantly on the floor and adjust my back, even at friend's houses.
Alice> People are becoming more understanding now when i say i have to lay down. I think if we are honest we probably all get angry at having all these changes in our lives
Mary_LouC> I sometimes find that I can plan something, not knowing how I will feel on any given day, and sometimes. when the day comes, I have to cancel. I have learned to warn people in advance that my "yes" to attending the dinner or whatever, is only tentative and depends on how my body is behaving or not behaving that day.
[HOST_Carolann] yes, Jo I do that too, people understand if you just explain you need to do it
Dana> Yes, Louise, I agree with you.
GUEST_JO> Mary Lou, that's what unpredictability is all about
Alice> YES Mary Lou! It is important to let people know that you might have to change your plans at the last minute. Then they can work around that.
GUEST_JO> I need to educate people that my days may need to be changed (except of course when I have speaking engagements! Then I just pray and ask the Spirit to take over!)
GUEST_JO> It is amazing how He can use my weaknesses! And all of ours.
Louise> I have found people do not understand the canceling. One by one they drift away. It inconveniences them too much.
[HOST_Carolann] I think it's good to keep in mind people can't read our minds and we need to let them know what is going on with us
GUEST_JO> Louise, I think the ones that stay are the ones who can understand.
[HOST_Carolann] yes, I agree, Louise, the ones who don't really care, are more concerned with themselves than with their guests
Mary_LouC> Some people are better at adapting to us and our unpredictability than others.
Mary_LouC> The true friends are the ones who recognize that we're worth the inconvenience!
GUEST_JO> That's very true. AMEN
Alice> Amen Mary Lou!
Louise> Jo, I am sorry to say after 10 years, no one is left.
[HOST_Carolann] yes, very true good point
GUEST_JO> Oh Louise, I'm sorry
[HOST_Carolann] oh Louise, I am so sorry - that's hard
GUEST_JO> Do you attend a church?
Patricia> The unpredictability of illness left me without any students to teach and most of my students were from my church.
Alice> No one at all, Louise?
Mary_LouC> I have lost a lot of friends, too, Louise. For some, friendship is based on our ability to go out and socialize on their terms.
Louise> I had so many friends and neighbors...I no longer hear from anyone.
Mary_LouC> Actually, church people can be the most disappointing of all!
Mary_LouC> We expect them to be kinder, more patient, etc., and when they aren't, it's a real letdown.
[HOST_Carolann] I think because we expect a higher standard from them
GUEST_JO> Unfortunately, you're right.
Alice> Yes, the church people should still be there....although, i have found with my HopeKeeper group, most of the people in our church have no clue what HK is even about...and i have been up front and explained it
Michelle> Louise, I am so sorry. The friends I had when I first got sick are all gone, too. We changed churches and couple of years ago, and I've made new friends who understand.
[HOST_Carolann] oh Louise, I will pray God will refresh you with HIS presence, and send someone special your way
Louise> Too ill for church. Husband has joined countless small groups hoping someone will care but they do not.
Mary_LouC> That's what makes Rest Ministries and on-line friends so important. They understand.
GUEST_JO> Me too, Louise.
Michelle> Louise, my heart goes out to you.
GUEST_JO> We have been in churches in different places where we lived where people were supportive, and some where they weren't
[HOST_Carolann] that is a sad commentary on some local churches and fellowships
Mary_LouC> That makes a terrible statement about some church members, doesn't it, Louise? That's so very sad.
Alice> I'll sure be praying for you and your husband, Louise. I care!
Louise> I constantly ask God to send me just one friend.......but I am still alone.
GUEST_JO> Me, too, Louise
GUEST_JO> Louise, may I ask what you have?
Alice> It is sad.....but ask Lisa Copen.....it is SO TRUE -- about church member, i mean. And, even most Pastors, Lisa Copen says don't really understand or take time for chronically ill members.
Patricia> Yes, the folks at Rest Ministries do seem to understand what is happening. I do wish that my church family was more understanding about the needs of people who daily battle illness.
Louise> Chronic Fatigue syndrome, fibro, daily migraines, dizziness.
[HOST_Carolann] I know what you mean Alice
GUEST_JO> Thanks for sharing with me, Louise, that's a lot to deal with
GUEST_JO> I agree that pastors are some of the least prepared to minister to us
Dana> Sometimes this is hard to do, but I find I have to reach out to gain a friend. Find someone who is worse off than you, make a quick call, or write a note. See what happens with the friendship. (I hope I have not overstepped my bounds saying this. I care so much Louise and will be praying for you. We have the same illnesses.)
GUEST_JO> I think we need to educate them one by one, asking if we can talk to them.
GUEST_JO> Dana, I agree.
Alice> But, if you talk to your Pastor, he will usually be honest and tell you that he wasn't really trianed to deal with chronic illness.
[HOST_Carolann] you're right Dana, it helps if we reach out and help someone else
GUEST_JO> True, Alice, but he may see the need to institute an outreach ministry
Alice> That's why it is so important to educate one by one......that is why i find Hopekeepers to be such a wonderful ministry.
GUEST_JO> People pull away when they don't understand, as well as when they are selfish.
Mary_LouC> The sad thing is that, often it's people with chronic health problems who are the best at outreach ministries, etc., but they have the least physical resources to provide them.
Louise> Dana, I honestly do reach out. I have a great sense of humor, always laughing - but people are too busy.
Alice> Yes, Jo -- and that is why we now have a HopeKeepers group in our church. (sorry - not trying to sell you all on HK)
Patricia> Mary Lou, you have hit the target dead center.
GUEST_JO> I'm sold anyway!
Ron> keep selling Alice
lisa705> most people with chronic illnesses are on limited incomes and we do not have alot of money
GUEST_JO> We don't need money to encourage others, even by phone.
lisa705> well at my church there always giving me ideas but it costs money and I can not do that
GUEST_JO> I'm sorry, lisa
lisa705> I can call people though
Ron> you can send ecards to encourage others
GUEST_JO> Right on!
[HOST_Carolann] Lisa I have found the same thing - they want to go out for lunch or something and I just don't have the money for that
lisa705> they do not have computers so that does not help
Mary_LouC> I have also found that some people subscribe to the health and wealth theology that says if we had enough faith we'd be healed. And they shun people with chronic illness.
GUEST_JO> That's very true
Alice> I sure will be! I am working with a young lady in Arkansas who is getting ready to start a HK group -- she is actually going to be on a TV interview.....and our HK group was selected to share clips of a group in session. Please pray for Ramona....she has MS and fibromyalgia.....and is just so sweet and upbeat.
Mary_LouC> I honestly think some Christians are afraid because they don't want to end up like us. They want to believe that God won't let them suffer!
Dana> I understand. I am 36 and don't have any "well" friends my age. The few I have are grandma age--we don't do active things. We just visit on the phone or they stop by to drop something off. The well world is so busy. And many times they just don't slow down for us. Maybe our definition of what a friendship should look like should change. I hope and pray you find someone special, Louise. You are so honest and would be a wonderful friend.
Mary_LouC> So we scare them and the don't know what to do with us.
Ron> true ML
[HOST_Carolann] yes Dana I agree!!! Well said
GUEST_JO> That's why we educate them one at a time
GUEST_JO> The ones who seem interested, I mean
Alice> That's the key, Jo
GUEST_JO> The ones who fade away may be reacting to something inside of us, too. some expectation that we have that they CANNOT meet
lisa705> I just printed out information about my Polio and passed it out at our church so the staff would understand more about why I have to stay inside when it gets cold out
GUEST_JO> We may be expecting them to be here for us too much
GUEST_JO> Good lisa
lisa705> we are suppose to get negative windchills of 40 0r 50 below starting tonight
Alice> Lisa, i did that with my family and friends
GUEST_JO> I love to use my disability as an opportunity to begin a conversation with a stranger next to me, especially on an airplane--they're a captive audience!
GUEST_JO> then I can educate them about what people like me need, as well as tell them about Christ!
Alice> Our weather is changing, too and i am in terrible pain yesterday was one of my "cry days' because of the pain from the weather.....and stress.
lisa705> I just did that over the holiday and it helped a lady open up to me about her loosing her job
Mary_LouC> Yes, if you share your vulnerabilities, you'll find that opens the door to them sharing theirs, doesn't it?
lisa705> she waved to me when I left the store with my dad and told me thank you for listening to her
GUEST_JO> Exactly!
GUEST_JO> We show them the love of Christ IN our suffering!
[HOST_Carolann] how wonderful Lisa - God can use us if we are open to caring in whatever way we can
GUEST_JO> The joy of the Lord shines through us when we're vulnerable about needing him in our lives to deal with our suffering!
Dana> amen
GUEST_JO> Lisa, way to go!
Alice> I went to a seminar and the speaker told us to actually wear an arm or leg brace and it will open up conversation. I haven't had the nerve to try it yet.....but the wheel chair gets me extra kindness. ha- ha - so the brace would probably work.
GUEST_JO> We're inspiration IN OUR WEAKNESSES. We show forth Christ.
GUEST_JO> Alice, go for it.
[HOST_Carolann] amen
lisa705> that has helped me because people have asked me what happened and then it opens the door to share with them
GUEST_JO> I love to associate with Paul in weaknesses
GUEST_JO> Amen, Lisa
[HOST_Carolann] Well we are getting close to the end of the hour, any closing comments Jo?
lisa705> they always say there sorry but I tell them how I have been able to babysit and volunteer at my church
Alice> Yes Jo! Paul in my inspiration when he talks about God being strong in our weaknesses.
GUEST_JO> So, it seems we all have unpredictable lives even though we live with chronic PAIN AND SUFFERING
GUEST_JO> Thanks so much for sharing, friends.
GUEST_JO> Keep sharing when you see people closing up
[HOST_Carolann] everyone feel free to stay and chat more if you wish
Ron> Remember this chatroom is open 24/7, pop in when ever you can to see if there is someone here you can encourage
GUEST_JO> Dana, or anyone, email me!
Mary_LouC> Some of the unpredicatability is good -- like the unpredictability of getting to share with the Lord, like you did, Lisa, and you, Jo, on the plane.
Alice> Thank you Jo -- I know my new friend in Arkansas would like you to pray for her.....with her having MS too.
[HOST_Carolann] thanks for mentioning that Ron
Mary_LouC> Thanks very much, JO. This has been a good session.
GUEST_JO> Alice, I wrote her name down as you mentioned her!
[HOST_Carolann] thank you SO much Jo for all your insights and everyone for sharing and being here to listen
GUEST_JO> Well, I think you're all dealing well with the unpredicatabilities!
[HOST_Carolann] it's a learning process
[HOST_Carolann] and we thank you for helping us learn a bit more today
Mary_LouC> Good bye and God bless you all!
GUEST_JO> It sure is, Carolann, Thanks, again, and God's blessings on all of you.
[HOST_Carolann] God bless you too
Alice> Thank you Jo. I love you web site --- keep up the good work. I would love to hear you sing. maybe i'll have to order a CD Good bye everyone and thanks.