Well we’ve survived August, with its inches of rain, chaotic roads, buses running late, busy shops and school children about.. Well we would have done but due to the awful weather other than for a trip to the sea zoo, and a weekly trip to the play park in Caernarfon most day trips planned for beaches got cancelled.
We have spent a bit of time in August watching the olympics, and Steve and Asha had a teddybear Olympics for a few days. Now the Paralympics are on we’ve discussed disability a bit more, and invisible disability and prejudice. We have also talked about how people make friends, about bullying and about Autism. After waiting outside a betting shop for a bus one day, steve had to answer some questions about betting, how odds work and horse racing.
Asha has been busy though.. She has been working on her reading skills, has developed some good IT skills, and can now easily browse you tube for instruction videos.
Reading wise she has nearly finished off the complete Harry Potter, at bed time. We have introduced her to Anne of Green Gables, via an audio version. Only the first book in the series is suitable for her, but she seems to be enjoying it.
She is currently also enjoying the first of the 1940′s Dr Dolittle books. – hugh lofting. I didn’t realise how many books there are in this series, we have five of them, : The Story of Dr Dolittle, Dr Dolittle’s Circus, The Voyages of Dr Dolittle, Dr Dolittle and the Green Canary. Were hoping to get hold of the others… Once we have read these I am planning on introducing her to some Enid Blyton. Over the next few months i plan on reading books which she can read herself, to try and encourage her to take the book away and read it in between her time with me.
She has also been in my hoist and has played and played with her toys. Her chinese is coming along well, and it always makes me chuckle when she answers questions i ask her in mandarin… She has a good grasp of basic maths, and her problem solving ability is brilliant. She can use both the online dictionary and book format for finding the meaning of words, and often draws parallels between different stories when were reading.
I am thinking of trying to introduce her to some kind of needlework after christmas, to some extent this depends on where were living at that stage. I hope were moved before christmas.
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..
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.
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..
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.
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…
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…
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.
And cant sleep or have pain relief.. Hope tomorrow will just pass.. Life is crap right now.
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.
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 sponsor form
Or you can donate via the team just giving site on
Any amount will help. Thankyou
One of the least talked about aspects of ME is the paralyisis, which can happen for many this will normally be either left or right side, for me, it tends to be lower half of my body.. Today i have had a para day. This makes
getting to the commode, next to my bed especially difficult, today its been o.k. Cos i have generally had cog function. Some days it can be dreadful. I am hoping they will work tomorow and wednesday, especially as steve is out tueday and wednesday and i really hate having to use my pads for a number two… Its bad enough when i loose bowl confrol and have to do it, its even worse when i know i need the loo but cant get there due to lack of support. Then i am stuck in it until someone turns up to change me.
Life can be very degrading at times…
I found a book which i really liked the sound of today on amazon, but the 57 pound price tag, totally prevented me from ordering it a further search by a friend got it down to around, 30 from abe, posted from canada, but,,,,then i discovered its author offering it as a free download…yay… Husband was soon able to get it as a pdf, and he will pop it onto my ipad some time this
http://www.nightingale.ca/index.php?target=bookoffer accessed 15th april 2012
The Clinical and Scientific Basis of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
Edited by Byron Hyde, M.D. – Nightingale Research Foundation, Ottawa, Canada with editorial and conceptual advice from Paul Levine, M.D., NIH, Bethesda, Maryland, USA and Jay Goldstein, M.D., Chronic Fatigue Syndrome Institute, USA, 1992
Published by Nightingale Research Foundation simultaneously in Canada and the USA, 1992
I used to be a member of this group years ago, and recently i have re-joined. They sell a selection of cards for fundraising purposes.. Please consider purchasing some..
I have had a few lovely presents today, which has been great. Young carers phoned because asha had taken more money put with her than we thought… They have gone to the Welsh Mountain Zoo And has decided she wants something, a bit larger than normal… Argh! Its her money…
Steve has done some tidying up and has sat and watched tv and knitted, un interrupted, i am sure the head space will have done him a lot of good, he has also tidied up, a bit.
I have my normal carer back here, after her lazy weeks holiday. I am so pleased she has stopped for a few days. Her having a bit of a quiet time at work, wont harm her. She has been ran ragged for a while now. She is bringing a new carer with her monday morning… Well new to me… I so don’t like getting new carers, but it has to happen. After a tough week on the sickness front, i’m feeling a lot brighter today, have managed to eat all three meals, and some fruit.
I really need to get steve onto apple about a screen cover for my ipad, so its even less glared.. Must remind him, as it really does hurt my eyes soo much still… I have it as dark as we can get it in the settings.
After a week or so of very little sleep, i was some what relieved that last night my sleeping tablet did kick in, and i got some sleep.. I think i even slept all the way through, and into the middle of this afternoon, i certainly dont remember much about being changed this morning, or my lunch time call, though i know i was given a drink, and put back on my side to sleep… Lush, sleep at last!
Steve and Asha were invited to a friends today so steve could learn to knit, he is very pleased with his progress on this front. They also went to get my meds from the pharmacists, its good not feeling sick for a while, though my stomach is still sore. Asha is very excited about her trip tomorrow.
We were also visited by a lovely friend, who calls in when she is up this way, its always beautiful to see her, and i really appreciate her kindness to us all. Those chats keep me strong, at times. Its such an isolating illness.
My main carer has been off for a week, the cover has worked very hard to try and make things as easy as possible for us all, she really has risen to a difficult challenge well, and deserves to be very proud of herself. It will be good to have my main carer back tomorrow, just because she is quiet, and less bustley, but the council carers are trying there best to meet my very complex needs. Next week we start training up a new girl, to replace my 25 th carer, in the last 25 months, hopefully that turn around will slow down generally now though….we will see;)
Had another letter about my esa….. Sigh… Wonder which bit of ‘cannot make or take phone calls…’ oh to be well again.
http://voicesfromtheshadowsfilm.co.uk/ this is the film home page, where you can find out more information about this excellent documentary.
Well for us it has.. I am totally bed bound these days, and most of my day is spent trying to avoide the pain of the environment. Enviromental sensitivity is a massive problem for me, at the moment, noise, sound movement and light all effects my body and makes my body feel as if i have had a tonne of sugar, but at the same time i am exhausted and often dizzy, or even being sick, with my head in a bowl. This is how i spend most of my days. If i am lucky i may be able to post to my fb, wall, using my phone, and steve has set me an app up now so i can post to familytree house more easily.. It can also confuse me and frustrate me, as everything races around me, and its a sensory overload..
So why has today been so hectic? Well i finally fell asleep at gone half 6 this morning, having had massive sickness and body temp fluctuations in the night. My carer came and changed me this morning, and my prescription is still in the back of the pharmacy van, which has broken down.. This is essential medication! After over 12 months of asking, were finally getting medical waste bags, which means, our wheelie bin wont be full of my continence pads any more, yes i am double y incontinent due to ME . My gp took away with him a copy of ‘ voices from the shadows’ on tuesday, its an excellent video on the true impact of severe ME on human life. We got a phone call to say friends are coming to visit. I can normally only manage a short visit, and when people live so far away..its hard to ask them to visit. It really does me good when they come though, and asha loves the company.
Asha has had a tough two years, but she has coped very well, thanks to having a brilliant father, us having a few very good friends, and a home edd group who have constantly offered her support and a safe place to play. She is involved with the young carers now, and on saturday, is looking forwards to a trip to the zoo. On tuesday she starts her manderin lessons. And this friday is off to visit some friends with steve. She has played at home for a lot of the last two years, but she is happy, and although at times, weve considered school or flexi school for her, she has flatly refused such ideas.
She has recently been delving through beanos, and harry potter videos, like a child possed, luckily for us, a large second hand dealer, has kept up our trade relationship, and weve managed to get hold of old beanos at a reasonable price to satisfy her hunger! She also went through a massive myths buster obsession and was fascinated by the victorian era for a while.