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Jokes, laughter and telling the time..

Vicki — Thu, 17 May 2012 21:19:52 +0000

Well she has completed two sheets of clocks, and seems to have grasped both analogue and digital time telling, so thats half past is the same as 30 minutes, and 20 too is the same as 40 mins past.. Yes..

She has also been reading and telling jokes tonight.. So a real leap of progress day for Asha. Whilst some people may think 8 is late for telling the time, i was 14 before i could make sense of a clock face so 8 is a wonderful age for it to all make sense.. As for the reading of the joke book… Its brilliant, reading is about enjoyment and what better research and fun is there than the beano and a good old animal joke book..

And off course in joke land, there is enough repeat words, to make sure that sounds such as kn, in knock knock, and ow as in owl, are now being read with out the need to sound them out.

Not sure what else she has been up to today, i know she had her mandarin lesson at 1, and helped do some tidying up this morning, thursdays tend to be slower days..

Blindness

Vicki — Wed, 16 May 2012 23:58:36 +0000

My eyes wouldnt open on friday, so i was forced into a world of darkness, which finally started to lift on tuesday night, but there still very sore, and it reminded me how very ill i am.

I have been forced as such to restrict all my activites, as my levels of pain are intense, and my brain is struggling with any activity or movement. My weekly bath was accompanied with an eye mask.

What a harrowing but wonderfully honest book. For anyone who likes true stories, this is a must read.

Vicki — Fri, 11 May 2012 12:36:39 +0000

One Last Goodbye: Sometimes only a mother’s love can help end the pain by kay gilderdale

We decided last week, that my excellent main carer, whom i know likes true stories, would get a lot from this book, both on the personal level, but also as it would help her to understand my fears, and my pain.

Its a brilliant illustration of the experience of many of us with ME. The mis management of the illness, the effect of this on human life, the day to day challenges of getting support, the fear and isolation of those with the illness..

[http://www.amazon.co.uk/gp/product/0091939143/ref=ox_sc_act_title_1?ie=UTF8&m=A3P5ROKL5A1OLE

The bible… Yes you did read that correctly!

Vicki — Thu, 10 May 2012 23:35:42 +0000

A couple of months ago asha went to see joseph and the technicolour dream coat at llandudno. Since then a few times she has asked about the story of joseph, and we have tried to answer her questions as constructively as possible. Well last week, we decided that there are many parts of symbolism in todays life, from the toy arks, to the symbol of the dove of peace, which can all be explained by the use of the bible, and so were reading the childrens bible as part of her bed time.

She is fascinated. She is enjoying the stories, asking loads of questions and loves the illustrations.

Awareness Week.

Vicki — Wed, 09 May 2012 18:34:40 +0000

Myalgic encephalomyetis, is a chronic, and disabling illness.

There are an estimated 62′ 500 people with severe ME in the uk, receiving seriously inadequate health care ( chief medical officer cmo sir liam donaldson (department of health (dh) 2002a)

Quality of life tests indicate people with ME feel similar to people with aids..

Why is this so..

Well let me explain where i am at the moment.. Bed bound. Most days unable to feed myself, so have to be fed. Incontinent, so have to be changed and washed, which is degrading. Often left for hours wet, because there isnt funding for 24 hr care. Nor do suitable residential units exist.

Bowel movements are painful. I have no thermal regulation, my body switiching from over heating to icey cold in minutes. Light burns my eyes, like gas flames.. My speech becomes rapid, then slurred then ends as my brain turns off, and i am unable to speak again. My movements become paralyised, at the most inconvient of times, and i have no control over it.. I have constant tinitus.. These all just part of a normal day.. I have the constant muscle pain, the times i cant open my eyes, or feel my face, the numbness.. I have the times when i want to reach out, but i cant.. I get the twitching muscles, the weakness, the exhaustion.. The pain of movement or sound going through me, battling with the smells from outside, of neighbours flowers, how dare they have flowers in there gardens!… The washing powder, though husband makes his own, to help reduce my chemical sensitivity…

So what can we do…

I could write

Vicki — Sun, 06 May 2012 00:01:16 +0000

Alsorts, about asha’s continual development in her mandarin lessons, her enjoyment of playing board games, here drawings, her sitting and reading the beano, her lovely cuddles, her crafting, her sensitive nature, her enjoyment of music. Her making her daddy laugh, her talking to my carers, alsorts of wonderful things which make up her day…

She is soo happy…

Monopoly !

Vicki — Thu, 03 May 2012 23:57:33 +0000

The last two or three days, Asha and Steve have been engrossed in the world of Monopoly. I guess if i split the game into educational outcomes it covers, maths, english, social skills, role playing, drama, banking systems, rent.. All sorts of things…but there just enjoying playing it. And well i guess There worlds are opening up more as Asha’s reading ability explodes.

Is past exhausted

Vicki — Tue, 24 Apr 2012 02:13:11 +0000

And cant sleep or have pain relief.. Hope tomorrow will just pass.. Life is crap right now.

Sunday…..

Vicki — Sun, 22 Apr 2012 21:31:35 +0000

Had a bit of an odd day today. Asha and steve have been very productive downstairs, moving stuff around so they can sit in warmth and comfort to watch television in the smaller room, infront of the fire this winter.. Rather than trying to keep warm in the big lounge. Steve also cooked a yummy roast meal with a leg of lamb he got reduced a while back,, scrummy! I have had two lamb butties tonight as well, and i noticed asha didnt say no when she was offered one either;) ..

Asha has informed me today that she wishes to learn mandarin because she wants to go out to china, when she is older. This explains her interest and fascination with the country. I hope she gets there. I am not sure if she has had a mandarin lesson today, but she and i did sit and do some sign language, and i wrote the vowels on her fingers, so she can practice her alphabet a bit more..

She has also watched another dr who. Steve always sits and talks to her about the episodes after she watches them, so i find that really constructive. Tonight asha told me she loved me all the way to jupiter and back..

I’ve also been pulling on one of my carers the last two nights about drop scones (also known as welsh cakes) as the shop bought ones tend to have preservatives in them..and i really struggle for supper ideas, i can chew.. Its been funny.

The big sleep for me

Vicki — Fri, 20 Apr 2012 19:23:10 +0000

http://www.thebigsleepforme.com/.

Asha and i plan on doing this. We need a specialist unit in the uk. Please support this cause.. I need my life back.. We deserve the best there is.

A pdf sponsorship form is availible on this link http://www.thebigsleepforme.com/uploads/1/1/5/4/11541260/the_big_sleep_for_me_sponsor_form.pdf

Or you can donate via the team just giving site on

http://www.justgiving.com/thebigsleepforme

Any amount will help. Thankyou