Archive for the ‘disability’ Category

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End of January

January 31, 2010

January’s been a strange one.

I gave studying a go, but was running on adrenalin, for which I’m now paying healthwise. Not financially too though, as thankfully I realised before the official course sart date. Someone shoot me next time I get a case of the “should” or “ought”!!

Knitting wise I got all evangelical about finishing my UFOs, but it’s been slow after the christmas knitting rush. A big purple balnket that I made and then ripped back, is ALMOST a new blanket, but not quite-the colour is finally growing on me though. I sold/traded some of the yarn I got because it was cheap, but didn’t really like the colour-lesson learnt there, colour matters big time to me.

THIS grey cardi:

gained a purple border and owned some buttons before I decided that by adding the purple button band, the shaping at the sides made my flabby bits look even worse (although they have lost the 5 pounds that’d crept on over winter)…. so over the past few days, the grey has become

this:

and is currently taking a bath

am planning a long short-sleeved top down sweater with it-how i ever managed to get a hoody cardi out of it I don’t know-but should have enough for the new project.

apart from announcing that Shannon has won the buttons. (I decided to roll a dice for the winner, and I rolled a 2. I’ll contact you!) my brain has run out of steam completely, so for now …

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Dear Doc

January 26, 2010

Dear Doctors,

(or anyone else interested)

I have a mystery I’d like solving-so here’s the lowdown:

16 years ago, aged 12 I lost my peripheral vision in both eyes. Leaving me with visual fields like those seen in people with pituitary tumours with pressure on the optic chiasma.(bitemporal hemianopia)

I was obviously immediately sent for an MRI. No tumour.

There was scaring on my brain however.

There was also Oligoclonal bands in my spinal fluid.

I got an MS diagnosis and within the year developed other symptoms: such as not being able to tell hot from cold water, the feeling of spiders running over me. My legs stopped functioning about a year later and I had bad spasms. Months of inability to walk were interspersed with relatively well times for the next few years. Initially I was given high dose Cortisone which appeared to help. I also had a few brief episodes of deteriorated vision, which were helped with low level cortisone.

The scaring on my MRI did not change. Oligoclonal bands were no longer present. MS diagnosis was revoked.

After several years of no diagnosis including psychiatric referral for assessment (dismissed as healthy!) I got a diagnosis of M.E./CFS.

Scaring on brain was put down to head injury as a child. It was briefly suggested that vision problems occurred at head injury time-this can categorically be ruled out as after said head injury I developed a nystagmus which was operated on age 5 and regular (max 6 month interval) eye exams were carried out. Pale optic discs were apparent though.

On the Ayme ability scale, I have been at 0% at my worst, but with careful management of energy seem to have levelled at 30-40%.

My vision loss has still not been explained and within the Uk system you have to be referred via your GP for investigation and as there has been no change in my fields, my GP will not make a referral. My visual acuity has deteriorated over the past 2 years from -1.5 to -2.25 and now -2.00

So if an interested doc happened to google any of my symptoms… I’m intrigued.

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hibernation of the human kind

November 13, 2009

writing blog posts just hasn’t been happening in large part as my body is in serious hibernation mode. Now on top of the afternoon 2-3 hours in bed/napping it’s decided that 8.30 is my bedtime! Off to my parents for a week, upon return I have photo evidence of what knitting and hibernation do to my tidy house 😉

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speeding up

September 4, 2009

My knitting is slowly but surely taking off again. Can’t even say too much, just in case some people read this! I frogged the sleeves of my dad’s sweater as one of them had an extra stitch and as I’d left it so long, I had no idea what stitch count I was aiming for. I have sat down with a calculatory and a pen and paper this time though, so fingers crossed.

The other part of my life that has sped up is my powerchair (electric wheelchair). I bought myself a second hand offroad chair. Camping was alot more fun in it. A pic of me going through the fields (on a bridle path!!)

me in my wheelchair, heading into the fields

me in my wheelchair, heading into the fields

Esvo Pyramide 4 Luxe Tent

Esvo Pyramide 4 Luxe Tent

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bad blogger

May 26, 2009

I just had a comment on this blog about my owl sweater and it’s kicked me into updating. I am a bad blogger, I know!

Easter saw some sad knitterly news. I was visiting my parents and went to the loo. I got very cold feet. I guessed someone had been over energetic washing their hands and that I’d trodden in a puddle. No wetness on the floor. I turned my foot so I could see the sole and there was the problem. My first pair of socks I ever knit for myself (using my grandmother’s hand me down metal DPNs and short row toes and heels-oh yes, nothing like jumping in at the deep end)  had developed a hole on the pad of my foot. I know I could darn them, but they are looking remarkably thin EVERYWHERE! It does mean that my mum has taken pity on me and is currently knitting me a pair of socks, that is when I don’t interrupt her with my phonecalls!

That same weekend, saw me battling with a fried M.E. brain charting out and calculating the start of my dad’s Birthday Cardigan. I am doing a Saddle Shoulder Cardigan but without the pattern as I couldn’t justify the postage for one pattern from the states. I have EZ to hand and she is all about no patterns, so I hope Meg will forgive me. I managed to cast on and knit, and somehow twist the join, so had to restart!

Roll forward to now and this weekend I completed the body (I’m knitting this in DK-slowwwww) and have just joined the cuffs to start the sleeves. Dad’s birthday was beginning of May, but he doesn’t mind… I am attending a class in June at Uk Rav Day being run by Jared Flood on steeking. I am secretely hoping that I will have speed knitted this and steeked it before then, but as the workshop is weekend after next, I realise that’s a tad ambitious! I maanged to skein, wash and dry some more wool for the sweater, all in one day thanks to the gorgeous sunshine this weekend.

For dad’s birthday Simon and I joined my parents in Edinburgh for a week. I did NO KNITTING (except for maybe 2 rounds on my socks) but can see why so many knit designers are bred there. The city really inspired me. From stuff you see and think NO WAY why all of that in ONE thing, but some of it might be useful… to amazingly perfect things. I’m speaking of all things, art, clothes, buildings, scenery, even food… loved my time there. I will be emailing Edinburgh council about wheelchairy stuff though, I got stranded several times…

here’s to more updates.

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shocked to the very core!

January 14, 2008

Currently Disabled People have no legal rights to live independently or having the same degree of control which non disabled people have over their own lives. …  there is no requirement in law for social services departments to provide an appropriate level of support so that disabled people have a full life rather than barely exist.” (http://www.bcodp.org.uk/campaigns/Independant%20Living.shtml)

Yes folks, it’s the 21st century in Britain and THAT’s the state of play!

As a disabled person in this country I am SHOCKED beyond belief that I didn’t know about this and that there is not more of an uproar… No wonder I am currently battling to get any sort of care.  That does pale into insignificance when you look at the bigger and wider picture. Please please spread the word, ignorance was bliss compared to knowing this snippet of information, but without knowing, we can’t fight.

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Travelling with a Wheelchair

January 5, 2008

New Year, time to think about a holiday?!

If you use a wheelchair, more specifically an electric wheelchair, the airline to avoid this year is jet2.com WHY? maximum weight of chair allowed is 32 kg, total weight, nothing removed! My wheelchair is a lightweight one, it weighs 66kg total. It comes apart and gets lifted in and out of the car, but no, the airline don’t want you to disassemble!!

In previous years there’ve been issues with ryanair, however it APPEARS they have their act together a little bit more. Wheelchairs carried free of charge (oh aren’t we grateful /sarcasm), no weight limit and they can be used until the gate in all but 1 airport. I wonder how they’d cope if I wanted to take my manual chair too? best not go there! This is also the airline who last time I flew with them, left me sat on the runway for half an hour as the pilot was sulking because he’d forgotten about me and then made me sit 12 rows back due to said forgetfulness he wanted everyone to sit at the back. So one girl in the front? No!! It’s also since then that my manual wheelchair veers to the left and clunks!

If only holidaying in the Uk were affordable/decent!  Or if you got a disabled holiday allowance! (wouldn’t we all love to fly with decent airlines, first class preferably and nice shiny hotels) Sorry, that’s a cheap shot and a “woe is me” comment. We are seriously looking at camping in the Uk, but wanted to look at all options…

I meant to make this journal available for search engines after the York taxi fiasco, but remembered to this time.

I think I shall forget about holidays for now and go and knit 😉  much safer!