Showing posts with label Chronic Illness. Show all posts
Showing posts with label Chronic Illness. 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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Thursday, 17 December 2020

Life - Love, Lust & Loneliness

[Image description: the writer drinking a cup of coffee in an empty restaurant.]


As the title above suggests, I shall be writing here about my own personal life and specifically the subjects of love, lust and loneliness. For much of the past twenty-one years I have been mainly house-bound and for much of that time I have been bed-bound with my chronic illnesses and disabilities. Despite seldom seeing friends and loved ones, as I have stated on previous occasions, I may be alone but I am not lonely in my aloneness.


My solitary existence, for the most part, suits my intrinsic introversion. I enjoy my own company; just being with myself, my thoughts, my daydreams, my memories. From being a very young boy I loved reading and would while away whole days reading. To this day, even though I am seldom able to read any extended writing, I continue to consider my old favourites as friends. In case that sounds strange to some readers, what I mean is that in reading my imagination was engaged and via it my intellect, my emotions, my whole being became absorbed in the tale. I formed strong bonds with individual tomes. As a child and into early adulthood, if I had a book in one of my hands, I was far from being or feeling lonely.


Thinking back on the times in my life when I have felt lonely, they were occasions when I needed people. As an older child and then a teenager, abusive parents meant the care & nurture I should have received at home had to be found elsewhere. And later, much later, when sexuality reared its head, the need to excise lust probably scarred me with the deepest loneliness I can recall. As I have aged, and opportunities for sexual dalliance have presented themselves, that deep lustful loneliness has all but dissipated, save for the occasional, sporadic prick of pain in my heart accompanying some wistful - often lustful - thinking, as well as on occasion during my annual, extended sojourns for recuperation purposes in Andalusia. In the latter case, being far from one’s usual support network stirs up feelings of separation and thus loneliness. At these times the lust I experience is more for physical rather than sexual contact (though of course the latter includes the former).


Still, I remain oddly optimistic and tend to have faith in people until disappointed by egotism, narcissism, disloyalty, dishonesty or neglect. I have lost friends I had thought were very close. I realise that there has been a pattern to many of these failed affinities: generally straight guys, who even as they confessed their love for me, recoiled at the failure of their own self-image of allegedly being a woman’s man. That goes for whether they were a friend or a lover.


I suppose part of the problem is that British culture does not specifically nor generally distinguish the different types of love: child-parent, amity, in-love, erotic, sympathy, empathy, love-in-action, amour-propre - for all of these we simply use one single term, love. We do not have opportunities to discuss the nature nor ramifications of these loves when in the education system. I think teenagers these days are given relationships education; but I suspect it only covers sexual and in-love affinities. It would be good if all types of love and a full range of affinities were contemplated.


Perhaps mine and my male friends are merely creatures of the socio-cultural milieu in which we were raised. I was in my late teens and early adulthood in the early 1980s when the AIDS crisis was at its peak with all the frenzy, aggression and rabid homophobia that surrounded it. This must have effected and affected straight men in ways that I do not suspect anyone bothered to study. So, when my chums have come to a realisation that they love me - that is feel emotions towards me, attachment, endearment - they suddenly see the monolith of homosexual torment from our shared youth. Most have not read the books and novels dealing with themes of male friendship. They are not students of sociology nor psychology. Naturally they flinch and then ultimately recoil from any declaration of emotional connectivity to another man.


No doubt, some will label me maudlin, overly sentimental or even masochistic for constantly holding all my current and former friends very dearly within my heart. From my perspective they are honed precious-stones that form the diadem of my life’s loves and as such are to be treasured always. Each jewel is different. I do not believe upon reflection that any two loves I have had felt the same. Having exclusive qualities each love was unique in how I felt about it, reäcted to it and expressed it. I have heard others speak similarly, but do not know whether this is a universal experience.


I suppose, prior to the popularity of the internet, I missed seeing my friends so regularly. I wrote letters as often as I could. But I was no longer able to dash around the country each weekend visiting this or that chum. Social media, for disabled people like me - stuck at home for the majority of their lives - has been a boon in helping to keep friendships alive, and not just with those scattered to other parts of the globe. I can socialise as much or as little as I please. As an introvert, too much contact can be very draining. Periodically I take time out from all social media to boost my sociability batteries. Like most things in life, moderation of usage is key. Nonetheless, the internet, at least for me, has been a way to be social. I have made acquaintances and some good friends all over the world. If I need to talk, there is usually someone available.


A further way of keeping loneliness at bay that I find useful is using dating apps. Most of these are not just set up for finding prospective partners, but for friend-making too. All these apps have a chat function, where real-time texts can be exchanged. Some of them even offer video-chat. Whilst using these apps over the past few years, I have had conversations and discussions about politics, the economy, Art, books, films, plays, cooking, baking, holiday destinations, and so on. This is just the same as having a chat down the pub, only without the pint of beer in front of me - ha, ha!


I have also met people with whom I have gone on dates. Very occasionally I have met a play-mate. I do not lust for the most part when I do not have a boyfriend. Even with a boyf I only lust when an appropriate expression of it can take place. To be frank: I have very little energy, even for masturbation; so, having a sex-date every now and then is sufficient for my needs. Yes, I should very much like to have a full-time boyfriend. However, realistically I do not have the physical ability nor stamina to date frequently, let alone participate in sexual pleasures. At this point in my life, and with no prospect of amelioration in my health, I should settle for a meet-up once a month with a friend-with-benefits (a person with whom one has sex, but without the intention of deepening the relationship beyond friendship).


My life thus far, at fifty-four, has been filled with all kinds of love with relatives, friends, the children I taught, boyfriends, even girlfriends and one long-term partner. I feel very blessed when I take out my diadem and look at all the different gemstones. I have had periods of lust, but due to my condition it is for the most part an entity of my past. I do not feel any sense of loneliness. For the past twenty years I have been quite happy - despite my situation - and am content, in that I am accepting of my life’s situation. To a degree - obviously I need carers for some things - I am very self-sufficient.


To all the relatives and friends, from my past and my present, whom I hold dear, I express gratitude for the shared love we had or which is ongoing. I thank one & all with all my heart. 💕


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I wrote this two year back and forgot all about. I was tidying up my documents folder and came across it. So now published herewith.



Tuesday, 14 August 2018

ME


ME


Lying abed
hour after hour
Quotidian longueur
Year follows year
inexorably
A prisoner
trapped in the bed
hidden by the blind
out of sight
outside
I want to be out there
living Life
not feeling ennui
or intermittent despair

Twenty birthdays past
when I was free
to simply be
and I danced then
cutting through
floating on
the air
I lived fully
in my body
running
leaping
flying
swimming
singing
joking
laughing
dancing
experiencing
intense Love
kissing
caressing
developing
affinities
my soul

This body keeps me here now
the flesh that struggles to struggle
no longer able to snuggle
in a lover’s embrace
nor for that matter
in a friend’s hug
This same body that’s killing me
slowly
but oh
 so painfully
Weary spirituality
Hope fades
colour drains
into multiple grey-shades
Insufficient energy
to risk mourning
promises of love
No sensuality
No plans
No Future
No happy-ever-after
Readying pain by pain
for an unsolicited here-after
Longing for much more
to be free
of anomie
of constant yearning
of constant envy
to be pain-free again
to awaken a too long-dormant heart
to experience intimacy
to sleep normally
to once again
read a novel cover to cover
entertain friends to a multi-course dinner
play adult games in bed
spontaneously
to be just the older
perhaps wiser
Me