Tuesday, 18 April 2006

Aaaargh ... !... . (laptop again)

He is a very nice chap, the man from IBM, and quite happy to visit me for the fourth time in two weeks (thanks to extended warranty).

He says my laptop problem will go down in IBM history as the one that refused to be fixed. He has taken it to pieces, and put it back together again. I now have a new mother board, and a new CD Rom drive. And a new annoying high-pitched noise under the keyboard, and a new creak on the bottom left of the bit I rest my wrist on, and a new refusal by the printer cable connection to be plugged, and now, intermittently, the scroll button freezes. I get a message to say "do you want to learn how to use the blue scroll tab?" and if I click yes, the message box disappears and the button won't move, for ages, then it does and the window comes back up and I click no and the button won't move for ages, and I have no control over when it freezes, pops up or just ignores me.

Which is, suprisingly, all very re-assuring, because the IBM man confirms none of this is anything to do with me. Its not me, my cogdysfunct, nor lingering neuro-toxic drug effect. The laptop hardware is at fault for the initial problem, and its his fault for not ensuring all ran smoothly after he put all the bits back together again.

So we have another date next week !

But not until next week's neuro toxic drug effects have passed, because today Tuesday was too soon. I could not take in his explanation of what might happen next, whereas last week on Wednesday I was up to speed and following his every explanation. I cannot take in new information for about 48 hours after the drug (MTX is low, very low, dose chemotherapy). I can talk, write, blog ( the easy stuff !), about subjects I already know, because it is already in my brain somewhere accessible, but taking in new information, or switching to a new subject is problematic. I cannot find the bit of the brain that 'runs the programme' or the short term memory to hold the process. I cannot find the door that leads to that part of my brain. The door to that ability has temporarily disappeared, so there is no point looking for it - because I don't know whether I am looking in the right place - which is called 'yes I know this' or I cannot do it because I am in a different space altogether .

I know that I am fortunate that this drug caused brain blip is temporary and merely adds to the slight cognitive dysfunction that comes from Lupus exacerbated by Menieres, or Menieres exacerbated by Lupus (no, neither my doctors nor I can decide which). I used to get quite distressed about the additional neuro toxicity of the drug, but now provided I am strict with myself and don't attempt too much, I just treat it as a couple of days off every week. I test my ability with Suduko - if I cannot process the simplest ones, then the drug hasn't left my system.

I cannot drive during this time (except in medical necessity - see blog on red light !) or make complex decisions, or read anything challenging or non-fiction. Thankfully, the temporary brain blip does not stop me enjoying fiction, music, friends (provided they come here, and I sit down while they get the tea), and it is all in a good cause - suppressing the damaging effects of Lupus, and it has worked a treat for seven years, so no complaints really !

I was once treated as royalty, with due deference, by a young chiropodrist, until I realised that her training was shockingly out of date - when taking my medical history, she had assumed and acted accordingly, that as I have Lupus, I had not long to live ! I brought her up to date on Lupus (which yes can still be fatal, but that is rare due to new drugs). She relaxed. It was still a very pampering experience.

I talk about my illness and disabilities in an attempt to normalise them as much as possible, to help non-disabled people be at ease with me, and to offer newly diagnosed/disabled people see some light at the end of their tunnel. People who are fit and well sometimes, in my experience, see any loss of health as a major disaster. Its not, for me. I know that for many disabled people it is hugely difficult. I am fortunate that my transition into disability was slow through ill health; yes it was problematic until I got a diagnosis, and disability benefits and home help in place, but I am fortunate to have lived a greater part of my life in good health. My friend J had no time to adjust, he came off a motorbike and was instantly paralysed. It took years to get out of institutional care and into independence. His resilience and input into the community through volunteering, taught me a lot. Now I choose how I spend my time on good days, within the limitations of a dis-abling society. More of that on May 1st !

This blog may seem off topic, to the subject heading, but this IS life in the Disability Shire, and that is primarily what I intended to use my blog for . If I can blog about my disabilities, then I can get on with outer life in a better frame of mind. However, blogging is blossoming into much more, which is a real joy! Thank you everyone.

Talking about my health - enough already. A few blogs back, a blogger friend said he was to have an 'investigatory procedure' sometime this month. Without wishing to pry, I am probably not the only blogging friend who would like to know when this is expected to happen, so that we can send him our best, know when to send him our virtual hugs (if he likes that sort of thing!) and/or good luck, and then know when to welcome him back afterwards. I quite understand if he just wants to disappear for a while then re-appear afterwards. So, over to him


Blogger Charlesdawson said...

Hi Sally, what a splendid post!

I do empathize with Menieres: I have cervical spondylosis which causes dizzy spells (positional compression of cerebral blood vessels) plus, as if that wasn't enough, recurrent labyrinthits.

How do we manage, I ask myself?

As far as your computer is concerned, I think myself that they, all of them, have passed the point of no return. They have become so complex that no human brain can understand all of them: it takes another computer. Machines talking to themselves ad infinitum.

Ever heard of dyscalculia? It's a fancy name for being unable to add up....I can't do Sudoku on my best days, so cheer up, there's always someone worse off....isn't that a sickening phrase?

I can remember the days when Lupus was indeed a death sentence, mainly because it was so under-diagnosed: most GPs wouldn't have recognised it iif it had wrapped itself round ther ankles and bitten them. Women, particularly, were prone to be told "It's all in the mind" or "it's the Menopause/PMT" until far too late for effective treatment. Thank God things are somewhat better now.

Yes, we did finish the decorating, very slowly and painfully. We missed a few bits but since I can't tilt my head very far back, I'm pretending if I can't see them, nobody can. The cats are highly relieved it's all over.

If you want to keep your fingers crossed, thumbs squeezed, or whatever, for a fellow blogger next week, feel free to do so.

Wednesday, 19 April 2006 at 09:13:00 BST  
Blogger Sally's Life said...

Hello Charles,

Thanks for your empathetic comments - what a wonderful word 'splendid' is. Splendid, thank you !

Meniere's is a pain, but as I don't have drop attacks, I still have a driving licence. I note from your blog you don't (I hope that is temporary) so that must be very limiting in a rural area, and frustrating unless your partner is around to drive you.

Meniere's Syndrome (as I am sure you know) covers a multitude of differing causes and symptoms, some similar to laybrinthitis (personally I blame visits to Knossos) and the M's Association journal covers all aspects. I did sympathise with your blog about climbing back along your garden hanging onto the fence. I once had to crawl to get away from an unexpected precipice (fort at Chania Crete) when I temporarily lost my ability to be a bi-ped.

More on dyscalculia and Sudoku in another blog (probably about Direct Payments) - its not about adding up ! There is hope for you yet.

Male GPs ! Dinosaurs. Mine said I had a neurotic need to be ill; he was ditched and the lady replacement got me to Rheumatology within a week - at Poole, excellent department, I can phone anytime, so we are looking into my liver function next week (truly I have only had three alcoholic drinks since December).

Glad the decorating is done - only the spiders see the top corners.

I will be sending you waves of positive energy next week, and a virtual hug at the beginning and end. Do keep us informed.

Anyone else out there with Meniere's - we can exchange tips on how not to be taken for a drunk !

Thursday, 20 April 2006 at 22:05:00 BST  

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