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How do you help a spouse understand that symptoms are really "that bad"?

Discussion in 'General Symptoms' started by me2, Jun 8, 2011.

  1. me2

    me2

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    Two days in a row now, my husband made appointments for me or one of the children at a morning time. I cannot take anyone anywhere at these hours without profound consequences and immediate symptoms like dizziness and horrible nausea. He said today I just "wouldn't get up" not that I couldn't. I am ready to give him a blood transfusion and see how tired he gets, but I doubt that making him sick, too, would help much. Any suggestions? I thought maybe an advocacy-related video might help. He said he just doesn't know how severe my symptoms are - even AFTER I have told him how I feel. Getting really frustrated! HELP!!
  2. insearchof

    insearchof Senior Member

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    Hi me2


    Sorry to hear this.....but it is not an uncommon story, sadly.


    Tell him

    1. Your body is broken. It's not that you won't get up, its that you cannot This video might help

    http://m.youtube.com/index?desktop_uri=%2F&gl=AU#/watch?v=r0w9-eQ_fKQ


    2. Alternatively....tell him you are not coping and cannot cope the way you were once able. Be honest with him and tell him that you have been pushing yourself at times in order to participate in life and family activities. Tell him how it makes you feel to be disabled and missing out on life.

    Tell him that as a result of it how it feels to miss out on so much....that you push yourself ....when in fact you know that this makes you more sick and then gives the misleading perception that you are not trying. Tell him you understand that now and that the reality of the matter is, that this means that you need to be far more careful and that in turn means you are going to need a lot more help with day to day matters in order to conserve energy and rest. Tell him the truth is you cannot manage and are not managing...that you need extra care, support and help.

    Some spouces are sadly unable to be more attentive to our care and needs. They leave us to look after ourselves and expect that life will go on with slight modifications. The truth is much starker. Substantial modifications and help is required if we are going to have any real hope of making some small improvements. Think about the possibility of getting in some third party help....be it with meals, housework, helping you shower etc or drive you and or your children so that you can make the morning appointments if they are so vital.... and other things to lighten your load and give you the rest you need. Telll your husband this is what you need and ask him to help come up with this solution. This should send him a clear message that you need greater help, support and understanding, if nothing else.

    The reality is...this is what we need....and we don't get it because we are still trying to meet completely ridiculous expectations .....both of others as well as our own. Some of pwME who are not bedridden, risk ending up there, because they may be too proud or un acustomed to asking for help or to have their needs met and or do not wish to acknowledge that have been handed a life altering disability which requires this sort of care and help. They usually are the ones who did too much for others or were expected to, before they fell sick and gave little consideration to their own needs. So it does not occur to them to start now....until things reach crisis point.....and then they are much, much sicker. PWME need to start acknowledging that their needs are valid and matter. They as wives, mothers, husbands, partners, sisters, brothers, etc......matter!

    If we are not prepared to acknowledge that we are worthy.....and say to ourselves..."this is what I need and I am going to put these important needs/myself first, in the pursuit of health and well being".......and make this very clear to other in our lives, then we cannot expect them to support us in getting those needs met and having a real chance at getting back a semblance of our health and former lives. So sometimes, we have to start with ourselves and get clear about what our needs are and then find the courage to ask for our spouce, significant others and family to support us in getting them met.

    I am not suggesting this applies to you me2....it is a simple observation I have noted is common place amongst sufferers and also possibly a reminder to myself about some of these matters?

    If you can relate to any of what I have said and think the idea of third party help would be useful you might want to simply put these suggestions to your husband.....if for no other reason than to let him know the extent of your needs and current struggle presented by this illness. Then hopefully your husband will begin to understand the severity of the illness and your need for greater support and care.
  3. olliec

    olliec

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    I think we have to be patient, and find ways to explain in a way they understand. That will be different for everyone. I've added bits of information over a long period of time, each bit adding to the layers of understanding. It needs to be done on a level THEY understand. It's easy for us to forget how to communicate it for others to understand, as we experience it every day, and to remember that we need to be VERY explicit with others, and relate it to THEM. I think "I am so tired today, it's as if you were jet-lagged and not slept for three days - can you imagine how tired you'd be?" is very different to "I'm tired". Likewise "my 'I'm feel crappy' is about the as your 'I feel seriously ill, i think i need to see the doctor'" is much better than "I feel so ill". What would it feel like for a healthy person to have the symptoms you at that that moment?

    Videos like this help too http://www.youtube.com/watch?v=qBriPTFOtmY&feature=youtube_gdata_player Many people want facts, without the emotional charge that comes from the frustration & despair that is part of this illness, and luckily some people are very good at identifying that information and making videos like this.

    I tend to draw the conversation away from the emotional difficulties the illness brings, as they are often even harder for partners to cope with. I focus on the language of symptoms and ill-health, and try to communicate what my experience of this disease is like, and how it impacts me.

    Something else I found helpful is to use a simple scale to measure incapacity. My partner will ask me "what number are you?" - if I give anything below 5, it's clear I'm in trouble and need to be horizontal. It's crude, but I think relationships need simple ways to communicate effectively, and we must remember that to other people we often don't look as sick as we are inside, and it's often very important to make it much, much more explicit.
  4. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    sorry to hear you have that issue with your partner. I recently was quite upset when my boyfriend phoned and tried to get me out of bed early due to the lack of understanding and the naive thought of his that if he makes me get up early, I then wont have sleeping issues.

    If you have a good doctor maybe he will talk to your partner and tell him how important it is for you to try to get the sleep you need?? I really have no other idea on what to do as its so so hard to help those who dont understand to understand as most of the time they think they understand your situation (in their own views) but of cause dont at all.
  5. me2

    me2

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    Thank you for your wonderful, caring and thoughtful replies.
    "Some of pwME who are not bedridden, risk ending up there, because they may be too proud or un acustomed to asking for help or to have their needs met and or do not wish to acknowledge that have been handed a life altering disability which requires this sort of care and help." Well, insearchof, you got that one right ... I am now trying to figure out if I should go to the ER tonight, call Dr. Klimas in the a.m. or see if insurance covers nursing care. Kind of afraid none of that will help. Almost unbearable pain tonight.
  6. acouchy

    acouchy

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    Canada
    I am so sorry to hear that you are having problems with your husband. I have gone through the same kind of thing with my parents and my boyfriend. I have spent many hours thinking about the stress this illness places on relationships and the danger of not listening to our bodies by ignoring the warning signs and pushing through in order to avoid conflict. I have come to the conclusion that it really is much easier for the sufferer to acknowledge and accept the limitations. I think loved ones often have a difficult time accepting the truth and go through serious denial about the reality of this illness. I think we have to be aware of this and place ourselves in their shoes. For the most part I think patience, time and lots of love is the answer. What about sitting down with him (face-to-face) and hold his hand while you calmly talk about how you both are feeling.

    Have you thought about joining a local CFS group and bringing your husband to a meeting? I know years ago I went to a FM class at the Arthritis Clinic where I live and it really helped. The first day we told to bring a loved one with us. I brought my Mom. She believed that I was ill but that day at the clinic really helped her accept the reality of it all. When she heard other people talk about their illness and heard just how similar their stories were to mine, she cried. She got it. No more denial. I have been thinking about joining my local CFS group and seeing if it would be alright to bring my boyfriend along to a meeting once I feel comfortable. He has come a long way in the last 7 years in understanding and accepting my illness (last week on my 3rd day of being bed-ridden due to a migraine-like headache/dizziness flare-up he actually bought me flowers! He said he heard the pain in my voice when he called me at lunch) but there is always room for improvement.

    Hope this helps.

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