Help! Need Help with Relationships, People Dont Get It!

Discussion in 'Fibromyalgia Main Forum' started by paulwin, Oct 29, 2005.

  1. paulwin

    paulwin New Member

    Hello To Everyone,

    I am new to this site and have been reading the posts. First of all I want to say all of you are heroes in my book for what you what you go through everyday. Secondly I wish I had discovered this site earlier. I have learned alot already. I send out thanks to Mikie, Jeanne in Canada, Stormyskies and many more for some good information. Most importantly I have learned the sad news about having CFS/FM can do to your emotional/social life.

    I have had CFS/Chronic Pain for almost 15 years and have lost most of my long term friends. At first I took it personally but now I am understanding it just comes with the territory which at least makes the burden easier to carry.

    I have two recent incidents I want o get off my chest. For part of this year I had a pretty bad set back with the pain in my legs which reduced my life to work or staying in my apartment. Walking any extra was just too hard. I told this to my step mother, who is not a bad person and I have known for 20 years. Her response "plant some potatoes they grow fast and are fun to watch" That was it. End of conversation. No follow up calls etc for the next months. I very rarely complain about my problems but when I do a little compassion would be nice.

    Secondly, I was talking to a friend of 7 years about a vacation she and her husband here taking. I said I havent had a real vacation in over ten years. Her response, "You are always on vacation" She knows my problems. I have told her that every day before I get out of bed I have to take something to get the leg muscles moving. Then it is to the supplement cabinet for more. Then to a warm salt bath and massage. Just so I can walk round in less pain. Vacation! Yeah at Club Meds. I still manage to work 4-5 days a week but do on call work so if things get really bad I can rest more.

    People tell me that they could not make things better so they did not know what to do and stayed away. I am not sure about the rest of you, but I dont want to be fixed, but just a little compassion. A break in the conversation when they look you in the eye and say it must be hard dealing with that every day. That response would mean so much but I seem to get it so rarely.

    So much for the rant. Now on to the solution. How can we have these physical problems and not get alienated from friends and family. I have lost enough friends already. I have become much more forgiving over the years, but also dont want my needs to be ignored. I have heard the stories about the difference between real friends and fair weather friends. At least for me this doesnt work. Having CFS/FM can put strain on even the best relationship. What can we do so this physical problem does not get compounded by loss of realtionships and emotional pain.

    Over the lsat year I have been meditating alot and the love and peice of mind get from that exprience has helped me deal ith the lack of compassion from others. Also I have been consciously working on forgiving as a practice. Forgive and play to peoples strong suits. Try not to get emotionally caught up because of their shortcomings in responding to you.
    This is hard to do because when things are really hard physically my emotions are that much more raw. But I am trying. but at times it is very hard to get rid of the ball of anger in my stomach when people completely ignore my problems. However, Life is too short and I need all the friends I can get so I am looking for creative solutions and coping strategies others have tried to keep the emotional relationships we so desparatly need strong even in the face of CFS/FM.

    As I said at he beginning, all of you are heroes in my book. I wish you much srength and love. Paul



  2. kalaya

    kalaya New Member

    Yes it stings when people we know come across as flippant or unsympathetic,but majority of this is not an intentional slight or jab just ignorance or a clumsy attempt at a bit of levity.When people go in the opposite direction from cfids/fibro sufferers it is understandable to feel betrayed but could we honestly say we would not do the same if the positions were reversed?
    If a friend we had came ill with cfids/fibro and by the grace of God we remained healthy in mind and body,would we remain allstar friends or bit by bit drift away?
    Human beings naturaly gravitate towards that which is pleasurable and push away that which is unpleasurable,so to give them the benefit of the doubt most of them are probably being nothing more than abundantly human.
    all that aside you are also being abundantly human to have some resentment and hurt by being set aside by friends who can be intolerant and unhelpfull with your illness.
    I have no magic words or surefire cure answers for you but your meditation and efforts to practice forgiveness will serve you in your cfids/fibro battle more incomparibly more than you know.
    I am a christian so put my faith in Jesus but I do not claim to be the sort to win every battle with my pride or vanity,but on the subject of forgiveness Jesus said to forgive 70 times 7 times.Which does not mean 490 times but simply to continualy forgive which is something we will need to do for the entirety of our lives.I wish you relief from your physical and emotional trials and a warm light heart.God bless.
  3. sues1

    sues1 New Member

    I sometimes look at someone and then glare.....why? Because a pain strikes me right then! To my family and friends I have mentioned it so they do not think I am responding negative to what they are saying. LOL.

    It is important that all understand, but also they do not deserve being pelted with our complaints. Sometimes we are enjoying people so very much and find a joke so funny, but we sit like a puppet.......because our strength is so low and/or really hurting. Yet we are enjoying ourselfs...the best we can anyway!

    So we must work on keeping our sense of humor and pleasant to be around. If we are not, they feel helpless because they do not know what to do for you.

    I recently forwarded some postings to family and friends per the computer. It explained my illness. I almost did not send them as I was also afraid they would think I was having a pity party and making myself the guest of honor!

    But the response was great! Fibro Fog right now........but one is THE SPOONS STORY.........type that into search at the top of the page to find it. It helps explain.

    What people do not know.......they fear. Now the people that I care for can be more open with me, and me to them. But I rarely complain........well to me it seems like I am not. I know it comes through more than I care to recognize, because we live this 24/7. But I try to keep it down.

    I am in awe that you are working.......You are special! I know it is hard.

    My newest Dr. gave me corizone(?) type shots in the hips. He has special very thin long needles and really was not bad. He gave me some in other areas also. Then sleeping meds.
    My hips are still touchy......but I rarely have that screaming pain and pain no longer awakes me at night. I used to wake up after a couple of hrs. sleep.......after long difficulty getting to sleep, with the pain and not be able to get back to sleep.
    My life is more worthwhile because of such....also on Cymbalta. (I am terrible on meds names, I carry the meds info in my wallet because of that).
    Good Luck
  4. sues1

    sues1 New Member

    I was thinking about the potatoes remark from your step mother........

    Actually she was giving you excellent advise. She might be one that shys away from illness or not good at handling problems? But BLESS HER.......she is right.

    A sweet potato cut and put in water in the window is fun......grows lovely greenery.

    SEE "IN THE FLOW..vacation from pain"

    I posted it on 10/29 at 12:00 PM <info makes it easier to find.

    It is not a cure but it helps......
  5. MamaR

    MamaR New Member

    Paulwin,

    I am not usually good at advise, but I was reading your post and had to try to share with you in hopes to help.

    First, I am like you with the pain in my legs. It is just awful, and at at times almost unbearable. People that don't have our pain just can't relate...so they either try to understand and are there for you, or they pull away. I know.... as this is been my experience and still is!
    I am slowly learning...but have to KEEP reminding myself that a TRUE FRIEND will be there.... and the others you don't need to spend your precious energy worrying about!!


    When it comes to family...well I am still working on this one! I have four sons. All of them treat me differently. The two oldest, (38 & 35 yrs) seem to try to understand (it appears), but when I gave my oldest son something to read on FMS, (just to inform him on how bad I am) he just read it and put it down on table...no response. I don't know if he didn't know what to say or just doesn't believe me. It hurts because I have tried for years to hide the worst of this from them. I think that was where I made my mistake! I just didn't want them to hear me complain. i always pushed and pushed, but now I can't anymore!

    I am like some of the others on the board. I just keep to myself as much as I can anymore. When I am with folks I tell them... I can do only so much.... and I let it go at that.


    For now my worst dread... is what will my new doc think? Will he/she believe me or not? I am so fed up with docs, but we have to have help with this pain.
    The thoughts in my head...will he/she think I am just wanting meds? I just want pain relief!!! I am NOT an addict!!! Or will she think I'm mental? I have to give myself a pep talk before I see each the doc. You probably know what I'm spaeking of.

    We will just keep communicating on this board as it is truly a blessing...and so informational also!

    GOD BLESS....Mari
  6. paulwin

    paulwin New Member

    Thanks for the response. I do agree with you about the forgiveness. It is just hard to do sometimes. As for if the shoe was on the other foot, I have alays been and still am the type of person who when I hear someone is sick I make it a point to spend more time with them not less, as I know how important that support is. Take care Paul
  7. rockgor

    rockgor Well-Known Member

    Healthy people don't get. It comes w/ the illness.

    I was asked to join a lodge. I explained I couldn't do much. I was told it didn't matter. So I joined. But there have been complaints. Most recently my name was on the front page of the monthly newsletter as someone who was not participating enough.

    Best place to talk about our situation is on boards like this or at a 12 step meeting (like Emotions Anonymous).

    I used to work full time and go to law school at night and have energy for a social life. Not any more. I have been called lazy and a whiner and a hypochondriac, etc. Can't do much about it. It comes w/ the territory.

  8. jesfms

    jesfms New Member

    im glad you asked this question and received such an excellent response...they have brought up so much that i have repressed over all these years...i guess i am just deaf to bad remarks about my health anymore..
  9. MerrimackRiver

    MerrimackRiver New Member

    Reading your e-mail brought tears to my eyes as my mother would not acknowledge that I had a medical problem. When I tried to explain, when she asked, would cut me off and say forget it. Like I didn't know what I was talking about. She would just shut me out. It was so difficult. Also my sister. My mother passed away in 1997 and yes I loved her dearly and miss her. Still hurts deeply.

    This "hidden illness" does cause problems with friends and family. I've had it for years and understand what all of you are saying. I know when just to shrug it off. Tell them I'm fine when asked how I'm doing. I do not talk about FM unless asked. If I'm having a lot of pain then yes they are told. I'm also trying not to take it personally, regarding losing friends, but it's difficult. New here so trying to make a few friends. I've gotton a lot of help since I've been on this board.

    I have a question for you - you talked about grapeseed and olive leaf pills. Are they herbs and what are the side effects? And is this only for CFS? I guess I have more then one question. :) You mentioned Amantadine (spl.?)... is that a prescription? And it's for just CFS? I have a terrible time with sleep. I couldn't tell you the last full night's sleep I've had. As a result no energy. But then that seems to be the story with a lot of others on this board.

    Everyone seems very strong. I believe I am. I do have my days. I also believe I have a pretty good tolerance to pain. Though when I get them in my neck and in back of my head I can get pretty bitchy. :<( I would really appreciate knowing these answers. Thank you so much.

    And thank you for listening to my whoes. :)

    Happy Monday to you, Merri

  10. 57Wagon

    57Wagon New Member

    I know in my case my friends only see me when I feel well enough to go out. I try not to complain about my illness too much so not to drive them away. People I know don't realize that I have to sleep to prepare myself to go out for a couple of hours. So when people see me out it would appear I'm faking it because I look fine. I find it extra hard because I live in a small community were I have lived all my life and know almost everyone.
  11. paulwin

    paulwin New Member

    Hi kristie,

    Sorry it has been so hard for you.The combination of physical and emotional problems is a real one two. The only advice I can offer is meditation. I know it sound far fetched but if you can stick with it it can really bring you a lot of serenity and love. Take care, Paul
  12. lovethesun

    lovethesun New Member

    Type it in on the title search.It's a great story to copy and give to those we love who don't understand.Linda
  13. paulwin

    paulwin New Member

    Thanks Linda, I will look for it. Paul