this illness

the worse thing about this illness is you can't see it , my family just thought i was depressed and miserable all the time . when i changed my shift at work my boss thought it was because i couldn't be bothered to get up in the morning and not because id been up all night in chronic pain and my ex husband thought it was something i was putting on so that i wouldn't sleep with him ( that's why he's my ex now )

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  • I totally agree although I have been extremely lucky in that whilst my family, employers don't really understand the condition and how it can debilitate you they have been supportive. Friends have come and friends have gone because of this illness but the true ones are staying the course with me. As far as my hubby is concerned he has been brilliant putting up with everything this illness can throw at me even to the point of having an almost sexless marriage. I am hopeful that there will come a day when I can have a life that is not ruled (to some extent at least) by this illness and it is this positive thought that I try to hang on to in my darkest moments.

    Thinking of you x

  • i am so glad your husband understands mine was not so nice he used to tell me i was useless , that he had a higher sex drive than me and that he'd have to start looking elsewhere at the time i was bleeding from vagina and rectum .my boss had his wife who were friends of ours googled my syptoms it came up as IBS so they told HR that's what i had , ive had times when its eased off so make the most of the good times . i have been told that i can not have any more surgeries as id end up in worse pain , i have gall stones which was found by accident , so i feel like eventually this illness is going to be my demise so im feeling stubborn it isn't going to get me yet im 49 single and i deserve some fun

  • I think its sometimes harder for other people watching than perhaps it is for us going through it. I am sorry yours was not supportive and I am sure if he had gone through a tenth of what of you do then it would make him think twice rather than of his own needs. It can't have been nice having to deal with that and a divorce while trying to do battle with this illness. Unfortunately when the chips are down it does show a person's true strength of character. I think your boss/friend might have meant well googling your symptoms but as you know they are very similar to endo it is easy to see why so many ladies have been misdiagnosed with it including myself in my twenties (although some do have both) rather than waiting for a diagnosis from the dr before telling HR. Kind intentions and all that but not very helpful in your case.

    As you no longer have the option of surgery what meds do you take to help with pain relief?

    I hope you have a happy and as pain free as possible xmas and new year. If you ever want a chat pm me

    Take care

    Sx

  • god if i here ibs once more with this ilness...you must of felt a little betrayed..theres nothing worse than people doubt you .its a double fight ..with the ilness and wanting people to understand ...i love wat you said at the end...it isnt going to get me yet...you sound like a strong lady...and your right you deserve fun...becos ive not met one person who wants this....can i ask who is hr??ive heard it mentioned a few times...onlybeen diagnosed 8months..trying to learn the lingo...merry xmas...x

  • yeh sorry human resourses at work and ibs is mentioned because the symptoms are the same

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