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Teresa

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Posts posted by Teresa

  1. Posted · Report reply

    Tally as far as I know there is no proven blood test for ME, well that's what we were told. T was DX with ME 4 year's ago after having Glandular Fever. She had a full blood test, meaning it covered everything and it showed that she had the Epstein-Barr virus EBV, which they suspected as the cause of chronic fatigue syndrome / ME, she was then monitored for several months before the DX was given. Even with the DX from the hospital she has had no real help, just give her melatonin which didn't help at all and was told to paces herself, still on a waiting list to see Chronic Fatigue specialist support. There is very little help out there, it's very sad. I must say T has improved in the past year just a little, wish it would go away completely.

     

    Teresa

  5. Posted · Report reply

    Thanks all. I feel like I can exhale for the first time in two years :thumbs:

     

    The best bit has been .... he's done this with practically no input from us. Yes, we've been supporting him, offering advice etc. but as far as contact with work goes, we've had to take a back seat as he's an adult. I can count on one hand the number of times I've contacted them. He has an award ceremony for his apprenticeship in November which we will be invited to - I can't wait.

     

    To think, just 4 years ago he'd never crossed a main road on his own & had never got on a bus alone. I hope its an encouragement to everyone - you just never know how things will turn out.

     

     

    It's great news and like you said you never now how thing's will turn out, just on a small scale T bought her first item of clothing came home with a coat instead of book, shock horror i couldn't stop :)

  6. Posted · Report reply

    I dread christmas to this day, when T was younger she's 19 now, every christmas morning she would be sick without fail, she disliked father christmas and would shake whenever she saw him, so one time a child in school told her he wasn't real, and i confirmed it and explained it was just a made up story, it seemed to stop her being sick on chrismas morning but still disliked father chirstmas. I have always kept it low key T's not to bad now but hate's visiting anyone hope it comes and goes in blink of a eye.

     

    Sorry but you did ask :)

     

     

     

  10. Posted · Report reply

    Ds L was born at 38 week's by emergency c/section with Potters syndrome, not a smooth pregnancy, doctor's didn't know what was wrong, just that he was small I had two amniocentseis test but they found nothing, it was the first case of Potters syndrome they had ever had in that hospital we are talking 24 year's ago, Oops showing my age now :whistle: , didn't put me off having a baby just waited 5 year's needed time. And T was born at 41 week's 9lb 1, normal pregnancy, induced labour and after 9 hour's had a emergency c/section again. Dx age 10 with AS/ hypermobile joints/ low muscle tone.

     

    Teresa

  11. Posted · Report reply

    Appointment never happened, the person she was supposed to see was talking to someone, so this head of learning support person just flicked her hand for T to go away, she didn't even get a chance to open her mouth. Hope T will try again on monday, if not will wait to see what happens from the email she sent to her form tutor who is also deputy head.

     

    Teresa

  12. Posted · Report reply

    Thanks guys great ideas, don't know them that well which makes it harder, she is my neighbour a lovely person we chat when we are in the garden, and she once asked if T would be interested in having a chat with her about her ME, as she was applying for a job in that sector. I really didn't want to go if i'm being honest as we thought we would not know anyone but she's invited the other neighbour's that live on the other side of her as well. So that's why i'm finding it so hard have been looking at some photo frame's also I like the idea of the memory box wish i had done that for my brother's wedding and think they might have a toaster, have been looking at hamper's but i think i left that one to late as the wedding is this saturday, that's me last minute, oh well if all else fail's i will give them a bottle bubbly and some money as a last resort, not very good i know, but it's hard when they already have what they need.

     

    Teresa

  14. Posted · Report reply

    T as a appointment tomorrow with learning support for her forthcoming exams ie: extra time/rest break's/laptop/quiet room in which to take exams, we have written a letter together explaining her need's or should i say she typed it as she much faster then me, which she will hand in tomorrow, hope that goes well for her.

     

    Teresa

  16. Posted · Report reply

    You hit the nail on the head Tally in what i am trying to do, and i take onboard what you said it made me think of how she feels when i'm nagging her all the time, I have backed off in the past to see if she can take control of what she need's to do, but she end's up doing nothing. I am not going to be around forever and she needs to be able to sort thing's out for herself, however difficult she find's it, that life. As for making her phone call's for her i stopped doing that when she turned 18, as i felt it was time to move her on, take charge of her own affairs with a little support form me. She came home from college today and we sat and chatted while she wrote an email to her tutor explaining that she missed the deadline for getting back her exam paper and was asking for more support etc.., she did that and took charge.

     

    Teresa

     

     

  17. Posted · Report reply

    Really angry after many week's of reminding T to get copy of her exam paper that she is resitting, she has now missed the dead line and is unable to get one. The reason i am so fed up is because when i have to remind her all the time, she get's really offish and hard work ie wont responed, which i can understand because i get fed up of hearing my own voice also, but we seem to get onwhere on this matter, it's not the first time it's happened. She hate's approaching people doesn't know what to say etc.. hate's talking on the phone it took me 3 week's to get her to remake a appointment at the hospital. And we do all the post it's and has a white board in her room which list thing's that she need's to do etc.. i am sat looking at this thinking what else can i do.

     

     

    Teresa

  24. Posted · Report reply

    T has had eye drops a few times in the last few months, she didn't find having the drops painful, it's the effect after they are put in your eyes, she became senitive to bright light/day light etc.. found it easier to go to bed when we got back from the hospital and just close and rest her eyes and after a few hour's she felt ok. Hope it goes well for you Mumble_Rocks.

     

    Teresa :)

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