hi, someone whom I stayed with for a few months (I'm moderate but can walk/stand for a few mins only and sit up for very short and talk for maybe a few hrs a day) who saw me go for a short walk like twice in that time, go swimming ( I can do it as it makes blood flow to the brain and im horizontal and dont have pots when in the pool) accused me of being lazy and not helping them and not pushing myself hard enough to contribute something to their household too. of course I dont wanna go back there anymore. I tried to explain im disabled and extremely sick
I also said It would be hard for me to go on a plane and they said 'well see, u made it! so why u keep saying you're disabled? it means u pushed yourself and so u should have done it here too!'
but they dont get that I used a wheelchair in the airport, only sat for two hours on the plane and then laid in the taxi back home! and then the PEM! dont even get me started. I can't pick up a lot of heavy stuff and not even every day but they said I simply exaggerate when I say im disabled! pls can u help and give me articles where it explains how we have different levels of energy each day and hour, that we can't predict when and how we feel, that some activities are harder then others, that PEM is almost torturous ( it is when severe)!!!! I can't belive this as the person at first said they believed me and then accused me of not being helpful and falsely saying im disabled cos I chose to go for a walk twice and swim a few times but then it meant I should have cleaned the house or whatever (which is immensely harder for me!) on other days (when recovering!). im sooo upset and when it comes from people close to u I am simply in shock as they are basically saying u are a liar and used them!!!! seriously people dont get it till they have it themselves !!!
I also said It would be hard for me to go on a plane and they said 'well see, u made it! so why u keep saying you're disabled? it means u pushed yourself and so u should have done it here too!'
but they dont get that I used a wheelchair in the airport, only sat for two hours on the plane and then laid in the taxi back home! and then the PEM! dont even get me started. I can't pick up a lot of heavy stuff and not even every day but they said I simply exaggerate when I say im disabled! pls can u help and give me articles where it explains how we have different levels of energy each day and hour, that we can't predict when and how we feel, that some activities are harder then others, that PEM is almost torturous ( it is when severe)!!!! I can't belive this as the person at first said they believed me and then accused me of not being helpful and falsely saying im disabled cos I chose to go for a walk twice and swim a few times but then it meant I should have cleaned the house or whatever (which is immensely harder for me!) on other days (when recovering!). im sooo upset and when it comes from people close to u I am simply in shock as they are basically saying u are a liar and used them!!!! seriously people dont get it till they have it themselves !!!
