Showing posts with label Hyperacuity. Show all posts
Showing posts with label Hyperacuity. Show all posts

Friday, 5 March 2021

Computer-Usage for pwME or other Chronic Illnesses


One of the M.E. Charities recently requested tips for folk using computers and other similar technology, such as smartphones and tablets. I waded in with my suggestions.


[Image description: open, working laptop]


My twelve tips for computer-usage by people with Myalgic Encephalomyelitis (pwME) or other chronic illnesses: medical conditions appear in parenthesis after the suggestion.


1.    turn the brightness to the lowest level at which one can still read comfortably (photophobia);


2.    some will find dark-mode is easier to read (white text on black background) (photophobia);


3.       turn on night-mode whenever needed (this filters out blue-spectrum light) or use an app that does the same thing, e.g. f.lux (photophobia);


4. avoid watching programme-streaming, videos and gifs (equilibrioception, dizziness, nausea);


5.    turn off or turn down sound to lowest needed level (hyperacuity);


6.    use services such as Feedly, which gather news and just list headlines (concentration, memory);


7.    use calendar/diary, e-post-it/stickies, spreadsheets/word-processing to create lists of to-do activities (memory);


8.    order shopping on-line, where possible, as it saves spoons (fatigue, etc.);


9.    use on-line/mobile banking to avoid telephoning or visiting banks, etc. (fatigue, etc.);


10.    use email wherever possible, as there is a written record (unlike face-to-face visits or telephone-calls) in case one forgets (memory);


11.    use speech-recognition software if physically using a keyboard is an issue (fatigue, pain);


12.    various types of stands, including some that are similar to a cushion, can be purchased/made (if one is crafty or has a good friend who is) to hold or lean one’s technology against, so negating the need to hold/grip (fatigue, pain).


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If the reader has any other good tips, please be at liberty to add them in the comments below.


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Thursday, 21 January 2021

Missing - a Poëm


For much of the time I cannot listen to modern music forms as - due to hyperacuity - it causes me physical pain. However, sometimes, when I am fortunate enough to be in a deep bath, I am able to listen to familiar pop-tunes. If my ears start to hurt, I dip under the water until they calm.





This afternoon was one of those lucky occasions. I was listening to Talvin Singh’s “Traveller” (video-clip above), a favourite tune of mine from the nineties. It brought back memories of love-affairs, clubbing, dancing, sunshine, of being actually alive and vibrant. Now I am - and have been for over two decades - severely disabled by chronic-illnesses. Suddenly I found myself weeping for my former life......


Mostly I am an optimist, though tempered by pragmatism. Whilst I allowed myself the space to mourn my losses, I also prefer to turn experiences into something positive - or at least constructive. Very quickly I started forming a poëm in my mind. I had to type it up as soon as I exited the bath-tub. And the result is what follows.



Missing



Missing


Tumbling

Into passion

A new friendship offer

But too great a risk

Spiritual strain

Leads to emotional

Falling


Missing


Tumbling

Into passion

A new love-affair’s call

But too great a risk

Emotional strain

Leads to physical

Falling


Missing


Tumbling

Into passion

A new adult play-date

But too great a risk

Physical strain

Leads to sexual

Falling


Missing



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Tuesday, 22 April 2014

My Sabbatical Sojourn Is Over

This morning I awoke in pain. As I came round I realised I was rather stiff too. Was it the two-and-a-half hours of light gardening I did yesterday?

I turned on my laptop and noted that many of the facebook entries reference the rain in England. After a nearly three-and-a-half months sojourn in Spain, I had all but forgotten that damp weather completely floors me. In my time on the Costa del Sol I had three wet days and there also I was confined to lying prone until the weather ameliorated. For most of my three months I was barely aware of the nagging pain that daily, hourly, minute by minute drains one's life-force here in the UK.

More than a decade ago, my then GP advised me to either move to warmer climes or at least winter abroad. My current hospital consultant, an endocrinologist, who specialises in M.E. and C.F.S., advised me to do similarly. This year, facing the stark choice of winter in the sun or be referred to an orthopædic specialist for surgery, I plumbed for the former.

And I do not regret having done so. Gradually, I was able to exercise more and more using the pacing techniques I had been taught by the now disbanded specialist Manchester M.E. & C.F.S. nursing support service. From needing a wheelchair, to hobbling with two walking-sticks (canes), to shuffling with just one, to walking unsupported on the flat (but not slopes or steps), I felt my body re-awaken. Muscles strengthened. Arthritic swelling reduced and reduced until it completely disappeared. My fine motor skills partially returned. For example, I could write again using a normal sized pen. I could sign my signature instead of just a squiggle. The more I got out and about, the less I was affected by hyperacuity and photophobia as my body's senses re-attuned to normality. I was less troubled by allergic re-actions to this, that and whatever.

Unfortunately, my vision, my equilibrioception, my forgetfulness and my susceptibility to muscle cramps did not improve. On the twenty-first of March I forgot to take my phosphate medication - the only time I did so. I suffered a massive cramp in my right calf whilst walking without a stick on the flat esplanade, paseo marítimo, in Benalmádena where I was staying. However, had I taken the aid with me it would have been of no assistance. The cramp completely felled me. I fell backwards, hitting my head on a wall before hitting it again on the ground. Thankfully, Spain is not Britain and folk came to my assistance. A passing male nurse checked that I was not concussed and later telephoned for a taxi to ferry me back to my apartment. This serves as a reminder, that how ever much my body might ameliorate, I shall never have back all the faculties I once had.

Taking into account the Christmas holiday period, I have taken a sabbatical of four months from my political campaigning activities for WoWPetition (now transmuting into WoWCampaign). After eighteen months of slogging nigh on every waking minute, usually abed, my brain, my psyche was completely frazzled. I attempted to refrain from getting involved, although came out of retirement for the February WoWDebate in Parliament.

Over the next few weeks and months I hope to gradually increase my efforts for the cause of we disabled folk, the poor, the downtrodden; but I cannot put in the level of effort I previously did - my body just cannot take it. To this end, please do not take umbrage if I: do not get back to you instantly; do not post every important update; do not sign every petition; do not forward every email; etc. I shall do my best, but must be a little more constrained in my input. I hope and trust you will all understand.

[Image description: via Peaceful Mind, Peaceful Life;
an image of a solitary key & a quotation which reads,

Don't give up.
Normally it is
the last key on
the ring which
opens the door. ]

When feeling down whilst alone in Spain, the above was posted on my facebook pages. I hope it instils in those feeling downhearted a sense of "carry on; we can do it"

Thanks for reading, folks.

Colin
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