Here is my update of what happened the other day.... what I shared on fb. I hate fb but it’s how I interact with friends:¬ ¬ My mam is gonna try email SALT. I like it to be emails, I like to be aware of everything being said back and forth. I like to avoid here-say. My mam and us went through hell trying to get pics and gestures done for me. Just cos I’m not as reliant on gestures right now doesn’t mean I won’t be. M.E is unpredictable and I’d rather have everything in place incase I end up back there again.¬ ¬ Not being negative I’m being realistic. Going back and forwards with M.E is inevitable. It’s a constant learning process. If it wasn’t I’d be better by now. It’s not as easy as others might think. Delayed fatigue (fatigue is such a shitty word, way too simplified..) is hard to predict. How bad will it be? How long will it last? When will it kick in? ¬ ¬ But I CAN predict that it is unpredictable!!!! It’s been my life for 5 years! ¬ ¬ Edward Frey remember how it took until December for me to write to u (in America) asking for help? And u sent me stuff to help me do my pictures in Feb when your home moving slowed down receiving it. (That’s ok mind u) it was all done through over exertion and made me more ill to write letter.¬ ¬ Ashleigh (she doesn’t need tagging - she having hard time) sent me those little white boards and helped me abit with my careplan to make better presented. ¬ Remember how we even asked yours for help to get mam to understand how to save pic, copy, paste.. make smaller .. ect.. and helped with other stuff that mam couldn’t.¬ ¬ It took 7 months to make that care plan with ALOT of help from others. And those pics I had help with... ¬ ¬ I spent 7 months making that care plan because last time I melt others decide my care plan I ended up in hospital.¬ ¬ I’ve emailed the Myhill group aswell. Not sure if I did it the best way, but knowing what is best is hard work sometimes.¬ ¬ ...I mean... before I started having osteo again... how often did I ever communicate with my friends? When ever I did it always made me so much more ill.... at times it was taken me a month + to write a letter for friend... afew times by the time I finished writing it.. the content would be out of date and I’d put it in bin. Felt like no point trying to write letters. I think I still have an unsent one to Ed remember how it took until December for me to write to u (in America) asking for help? And u sent me stuff to help me do my pictures in Feb when your home moving slowed down receiving it. (That’s ok mind u) it was all done through over exertion and made me more ill to write letter.¬ ¬ Ashleigh (she doesn’t need tagging - she having hard time) sent me those little white boards and helped me abit with my careplan to make better presented. ¬ Remember how we even asked yours for help to get mam to understand how to save pic, copy, paste.. make smaller .. ect.. and helped with other stuff that mam couldn’t.¬ ¬ It took 7 months to make that care plan with ALOT of help from others. And those pics I had help with... ¬ ¬ I spent 7 months making that care plan because last time I melt others decide my care plan I ended up in hospital.¬ ¬ I’ve emailed the Myhill group aswell. Not sure if I did it the best way, but knowing what is best is hard work sometimes.¬ ¬ ...I mean... before I started having osteo again... how often did I ever communicate with my friends? When ever I did it always made me so much more ill.... at times it was taken me a month + to write a letter for friend... afew times by the time I finished writing it.. the content would be out of date and I’d put it in bin. Felt like no point trying to write letters. I think I still have an unsent one to Ed somewhere... I think I had for jo... took over month to send.. ¬ ¬ Osteo is over 60.. she could retire and when she is gone, then what? I could go backwards just as before.¬ ¬ Being unable to communicate how others are hurting you on a daily basis for months on end was pure hell. When I was entirely unable to break through the isolation, it made me feel like next time I was in heart failure I’d just go with it and go see my passed on loved ones. ¬ ¬ When isolation has you holding your own hand trying to fool yourself it’s someone else’s. Fantasising having a convo with friend..... talking with them in your mind.. somehow hoping that from even countries apart that somehow they will receive your mental message. Imagining your convo together and what they would say back to you.¬ ¬ Thinking of the words... that if you got to speak to them what would your message be?? The most important words when each word communicated is so so precious and more precious than diamonds.¬ ¬ Speech is a gift. Being able to write is too. And to read.. ¬ ¬ I remember when I had to turn everything that had any words on around to hide the words, because even glimpsing them would exhaust me brain and cause deep need for sleep. When seeing random words on an object on a trolly can cripple your mind and body and make you unable to eat your food.

Here is my update of what happened the other day.... what I shared on fb. I hate fb but it’s how I interact with friends:¬ ¬ My and how I connect with the outside world. I’m also doing this abit backwards since backwards is what im good at, so comments would be good to read too, maybe first? to make sense of this! 😅 :¬ ¬ My mam is gonna try email SALT. I like it to be emails, I like to be aware of everything being said back and forth. I like to avoid here-say. My mam and us went through hell trying to get pics and gestures done for me. Just cos I’m not as reliant on gestures right now doesn’t mean I won’t be. M.E is unpredictable and I’d rather have everything in place incase I end up back there again.¬ ¬ Not being negative I’m being realistic. Going back and forwards with M.E is inevitable. It’s a constant learning process. If it wasn’t I’d be better by now. It’s not as easy as others might think. Delayed fatigue (fatigue is such a shitty word, way too simplified..) is hard to predict. How bad will it be? How long will it last? When will it kick in? ¬ ¬ But I CAN predict that it is unpredictable!!!! It’s been my life for 5 years! ¬ ¬ Ed remember how it took until December for me to write to u (in America) asking for help? And u sent me stuff to help me do my pictures in Feb when your home moving slowed down receiving it. (That’s ok mind u) it was all done through over exertion and made me more ill to write letter.¬ ¬ Ashleigh (she doesn’t need tagging - she having hard time) sent me those little white boards and helped me abit with my careplan to make better presented. ¬ Remember how we even asked yours for help to get mam to understand how to save pic, copy, paste.. make smaller .. ect.. and helped with other stuff that mam couldn’t.¬ ¬ It took 7 months to make that care plan with ALOT of help from others. And those pics I had help with... ¬ ¬ I spent 7 months making that care plan because last time I melt others decide my care plan I ended up in hospital.¬ ¬ I’ve emailed the Myhill group aswell. Not sure if I did it the best way, but knowing what is best is hard work sometimes.¬ ¬ ...I mean... before I started having osteo again... how often did I ever communicate with my friends? When ever I did it always made me so much more ill.... at times it was taken me a month + to write a letter for friend... afew times by the time I finished writing it.. the content would be out of date and I’d put it in bin. Felt like no point trying to write letters. I think I still have an unsent one to Ed somewhere... I think I had for jo... took over month to send.. ¬ ¬ Osteo is over 60.. she could retire and when she is gone, then what? I could go backwards just as before.¬ ¬ Being unable to communicate how others are hurting you on a daily basis for months on end was pure hell. When I was entirely unable to break through the isolation, it made me feel like next time I was in heart failure I’d just go with it and go see my passed on loved ones. ¬ ¬ When isolation has you holding your own hand trying to fool yourself it’s someone else’s. Fantasising having a convo with friend..... talking with them in your mind.. somehow hoping that from even countries apart that somehow they will receive your mental message. Imagining your convo together and what they would say back to you.¬ ¬ Thinking of the words... that if you got to speak to them what would your message be?? The most important words when each word communicated is so so precious and more precious than diamonds.¬ ¬ Speech is a gift. Being able to write is too. And to read.. ¬ ¬ I remember when I had to turn everything that had any words on around to hide the words, because even glimpsing them would exhaust me brain and cause deep need for sleep. When seeing random words on an object on a trolly can cripple your mind and body and make you unable to eat your food.