just diagnosed and cant get my husband to understand

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I have been diagnosed last week with cfs/me although I am still sceptical about the diagnosis. Many of my symptoms are ms and th see neuro just dismissed the ones that didn't fit cfs as everyday twitches and thinks I need to see a specialist for urinary incontinence and had no comment about being unable to pass stools on many occasions, does anyone else with cfs have these problems? I have twitches in my thumbs, side of hands legs, face stomache to name a few. On top of this my husband doesn't want to discuss it and said after 2 days I should stop researching and not let it take over our lives.i think ehst he really wants is for me to forget it so he doesn't have to listen to it and it will go away or at least it doesn't 'bore' him as he put it. I feel this us a real deal breaker as I am so upset and angry about the illness as well as the way it makes me feel useless, and he makes me feel unimportant.

He even suggested I run a 10k marathon next year and lose weight as he thinks that it making me feel more tired. I feel like running away and throwing in the towel and want to cry with frustration and hurt. Can anyone offer advice as I haven't got the energy to fight my corner and feel dismissed.

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  • Posted

    It might also be that he feels powerless to help, and this means that he doesn't want to talk about or acknowledge it? Not that this justifies him acting like a jerk, but people can end up responding badly to ill health for a lot of different reasons. Sorry to hear that you're having to deal with that.
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    • Posted

      Thanks for your support its needed. He was on about doing a half marathon again today... I have told him I want him to come to the doctors with me on the referral so he understands. He hasn't looked anything up about cfs as far as I know. I need him to properly understand as he said he feels helpless.

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  • Posted

    I get twitches alot as well. Its normal.. And your husband really needs to be there for you because with cfs, you need to know there is someone there that you can rely on

     

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  • Posted

    And dw my dad was annoyed when we found out i had cfs. You just need to get it through his head that you need him. And i know its frustrating, if you feel like that talk to a councillor i do and it makes me fell alot better about myself knowing that someone actually cares
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    • Posted

      Unfortunately or fortunately.not sure which, I have a psychology degree so I understand he is struggling but I can't get past how selfish it is. He isn't suffering, I am. Will try again!
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  • Posted

    I also get twitches and restless legs at night, severe headaches, and temperature fluctuations, pain in just about every joint in the body. In addition to not being able to sleep for days on end then crashing out for a week or so.

    Most Doctors either do not understand the condition or have a bash at fixing you but you have to go around the houses as to speak. It has taken me nearly 20 years of suffering to get the treatment and help, I need.

    My Father could never come to terms with ME and would say we all get tired which would wind me up no end... tired would be a good state to be in rather than this ME state.

    You have to think like they do some times to see it from their perspective, yes they do get tired and yes the do get the flu like everybody else, but no they don’t have ME/CFS so how can the ever know what it’s like.  

    A broken bone is easy to see as it’s in plaster normally, an person with a stick could have arthritis or hip/leg issues so you know a little bit beforehand just by looking, but a fluctuating invisible debilitating condition there is not a chance in noticing that is there let alone understanding it.

    I am I guess lucky, my wife fully understands my condition and has taken me to most medical examinations at the hospital or doctors concerning my ME/CFS. However, I have spoken to a few who have experienced just the opposite with their partners; ME certainly divides people or brings them closer together for sure.

    I hope you get the support you need. There are ME support groups dotted about the country I receive regular emails from my local group and the have a meeting every month in a restaurant  about 25 miles from where I live I would recommend looking out on line for your local group the offer great support when you need it.  

     

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    • Posted

      Just wondered if that was the Central London ME group that meet in a restaurant?  I've been once about a year ago - it was in John Lewis on Oxford Street. 
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    • Posted

      Thankyou that's really helpful. I know he is not a sympathetic man but its so hurtful and makes me feel worse when I have to argue and justify all the time... It's exhausting.

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  • Posted

    I was told I had me/Cfs many years ago as all tests came back normal I was sceptical like yourself , with good reason. I was told to read up on it and just live with it which I did because no doctor would take me seriously , ' oh it's all in your head your just depressed' and shooed out the door.19 years later after struggling to live a normal life I have been diagnosed with autoimmune disease and told I have not got or had  me/cfs !!!! Have you had tests for hashimoto s symptoms very similar ? I had incontinence on and off for years also constipated and insomnia tingling and numbness in arms and legs as well as a few more debilitating symptoms ! Have you any discomfort in neck /throat foggy brain wooziness ? This may not be you but worth checking out , don't be like me and just live with it doctors make mistakes they certainly did with me !!! As for husbands and family it is difficult , because you don't look ill or there is nothing to see they don't get it ! Good luck good health 
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    • Posted

      Omg yes I have neck and back pain, dizziness, wake up constantly, brain fig, trouble finding words, arms go numb and pins and needles at night, when I pick things up in my hands if it's heavy. Will ask my doctor as I was only in the neuro 10 mins and that was his instant diagnosis. Have had a stomach bug for 7 days and told its because of cfs I still haven't shaken it.
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  • Posted

    you are strong,your strenght is fighting of the illness,you are strong because you are the only one  with your strenght to keep it all together,dig in there,xxx am on board to help x
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    • Posted

      Thanks Simon. In a relapse again, and husband is still driving me to do things. Complains when we are in on a Saturday night even though we have been out the night before, working all day and running a business as well. He comments that if I lost weight I would be better! Endless yoyo of support and no empathy.
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