[Image description: an eternal circle of blue ribbon; the slogan reads -
Ever felt you've lived this day
a thousand times already?
With M.E. …
Every day is Groundhog Day.
© @batteredoldbook]
© @batteredoldbook]
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[Apologies: blogger will not let me alter the size of most of the text to 'normal'.]
By now many readers will be aware that May is International M.E. Awareness Month. Today, 12th May, is International Awareness Day. The date co-incides with the birthday of Florence Nightingale, thought to be one of the earliest recorded cases of myalgic encephalomyelitis, although obviously it was not named such in the nineteenth century.
This year rather than looking directly at symptoms, I am going to look at areas of quotidian life that most able-bodied folk take for granted, but which have been lost to or can so easily be lost by M.E.-sufferers.
Sleep
Sleep
Whilst it is very true that those with M.E. tend to sleep a lot, what is less commonly realised is that it is not deep nor refreshing slumber. Rather, one wakes up to being as tired or more so than when one went to bed. On top, many folk suffer bouts of insomnia or reversed sleep patterns (asleep during daylight, awake during night-time).
During my first few years of the illness, I on average slept for approximately twelve hours in every twenty-four. Now, after some twenty years of the malady, I sleep for around fourteen-and-a-half hours each day. For the past few years this level has been stable and has not further deteriorated.
Wakefulness
A healthy person after normal sleep, after an initial rousing period, will typically feel awake and ready to take on the day. An M.E.-sufferer, awakens to an unrefreshed state and may not feel awake before falling back to sleep again. This is not an occasional incident, but occurs day in and day out. Without taking medication, it is as if one has been medicated.
If the reader has ever had a course of anti-depressants or taken regular anti-histamines, one will have some notion of what it feels like to be in this awake-but-not state.
Dyscognition
Dyscognition covers various M.E. symptoms: an inability to concentrate, even for very short periods of time; the failure to recall the names of even the sufferers' nearest-and-dearest; the inability to remember words, even for the most common of objects; and so on.
In the early days, when still working (and walking!), I used to go every Friday (by which point my symptoms had flared up due to fatigue) to my local bank to withdraw monies for the forthcoming week. I always went up to the same cashier. One week, the latter had a client with a multitude of tasks to perform. I let several folk behind me in the queue go ahead of me; but finally I had to see the other cashier (whom I did not know). The first thing she did was ask me my name. I went completely blank. Thankfully, my known cashier leaned over and vouched for me.
Many folk discover they can no longer listen to music or watch television because, for example, they cannot follow the plot or lose the plot after a period of time.
I tend to watch programmes on DVD. This means I can stop when I tire. Or rewind if I realise I have missed a chunk of the tale. I also watch the DVDs several times, as familiarity assists me in obtaining enjoyment from what I am viewing.
My degree is in Religious Studies & Theology. As such I was used to pondering, recounting and debating philosophies. Now, it takes me several days to construct a blog-post. I have lost the ability to think deeply.
Just imagine how you would feel if you could no longer debate or even forgot how to cross the road safely!
Dyslexia
Along with the increase in dyscognition, comes the connected symptom of dyslexia, the inability to read & write. For some this happens only when their symptoms pejorate; for others they suffer for blocks of time; and, for still others they permanently lose their literacy skills.
My spelling always deteriorates as I tire. As a previous pedant and pedagogue this is abhorrent to me and my amour-propre. Whilst on good days I generally can read small amounts of text, I cannot usually read long newspaper articles and definitely not novels nor academic tomes. However, periodically, my ability to read for longer periods and especially for enjoyment returns. As a bibliophile, for me, this is one of the most hurtful symptoms.
Thank the maker for spell-checkers!
Dyspraxia
Dyspraxia relates to the loss of the abilities to plan, co-ordinate and actuate movements. An able-bodied person will rarely if ever even actively think about this, but will just get on with activities the body is used to. But for those who suffer from dyspraxia, the ability to do everyday activities becomes quite difficult.
Some of my personal issues in this area include; tripping over oneself when trying to walk; not being able to lift a cup to one's mouth without missing the aperture; and likewise with a fork of food; dropping objects I think I am holding firmly; not being able to turn pages in books, etc.; and so on. For myself, I do not suffer from all of these at the same time. I have good days and bad days like many M.E.-sufferers. But those suffering from the very worst state of M.E. have permanently lost these abilities.
Hyper-Acuity
Many folk with M.E. develop hyper-acuity: the ability to pick up the quietest of sounds. Unfortunately, this also means that louder noises are augmented to an uncomfortable or painful level. Many sufferers are forced to wear noise-reducing head-phones to escaped this unsolicited cacophony.
I myself can no longer endure electric clocks or other mechanisms that use electricity within my bedroom, as I can hear the buzz of the electricity. Most days I cannot listen to music, although recently I have been able to listen more regularly to Auntie Beeb's classical music station, BBC Radio 3. Nonetheless, whenever something loud comes on I either have to turn down the volume or switch off completely, as the loudness sends searing pains through my head.
This also means I find it very difficult to attend the cinema. However, for the last Star Wars film, I was determined one way or another to see it. I donned ear-plugs and was able to cope with the sound levels without them making me swoon.
[Image description: internal, closed blind with light spreading around the edges]
Photophobia
Sufferers often become intolerant of light. Those who suffer the most have to wear blind-folds &/or dwell in completely darkened spaces. Like hyper-acuity, the effect of photophobia is intensely painful with searing agonies in one's eyes.
I often keep my blinds completely down to limit the light entering. On other occasions I don sunglasses within my home, even with the blinds down.
Mood
Due to medications &/or hormones it can be very difficult to control one's mood when one has M.E.
There have been times when I have been unable to control my temper. Inside I am aghast at how I react, but am incapable to calming myself down. I usually have to exhaust myself and fall to sleep.
Depression is common in those with M.E. Whilst some folk may have personalities pre-disposed to developing depression, the vast majority of M.E. folk I have met developed depression after they became ill. A couple of years after my M.E. on-set I began to mourn my lost life. I became depressed. Thankfully, I was referred to a psychologist who over the course of a year assisted me with Cognitive Behavioural Therapy (CBT). This worked wonders for me. I developed self-confidence I had never had. To this day I still regularly put into practice the CBT aids I was taught. Unfortunately CBT has had a bad press amongst the M.E. world due to poor praxis and unsympathetic practitioners.
Sex-Drive & Sexual Relationships
Many folk with M.E. become asexual. Both the desire for and engagement in sex require energy, something which tends to be in very short supply for sufferers. Even masturbation can be beyond our capabilities. Even just being touched, caressed can prove too painful for sufferers.
Those in relationships prior to the on-set of their M.E. find it very difficult to fulfil their partner's desire for sex. Very often the relationship collapses or, at the very least, changes from a partnership of equals to more of a child being cared for by a parent. Intimacy is lost.
For those not in a relationship or whose affinity collapses after the on-set of M.E., they find it very difficult to find a new partner. With the extreme variability of our conditions from week to week, day to day, and for some, hour to hour, we cannot be relied upon to turn up to a date. Furthermore, there are very few individuals who are willing to invest time in getting to know disabled folk.
Friendship
If we cannot hold on to partners, it is even more difficult to keep our friendships in good order. Virtually everyone with M.E. loses many or most of their friends. Some take issue with our unreliability. Others do not want to be emotionally dragged down by seeing and being with someone who is always ill. For those friends who stick by us, there is a genuine reassurance that these are our true chums.
Family members often react in the same way as friends. Most folk with M.E. lose contact with unsympathetic relatives.
Quotidian Activities
M.E. sufferers, we have seen above, lose the abilities: to read & write - so no visits to the library; to watch television or go to the cinema; to listen to music whether at home, a concert-hall, a pub or the park; to hold on to affinities or develop news ones; and, to enjoy sexual activity.
We also lose the ability to do exercise, whether going to the gym or swimming-pool or just strolling through the countryside to enjoy nature.
We can no longer go to the shops unless with assistance. However I have found I can do my shopping on-line, even if it does take me a couple of hours, and have it delivered to my kitchen-table.
We cannot cope with full-time working or any kind of employment at all, depending on the severity of our symptoms.
We lose the connection to civic society, such as local politics or supporting local community groups/actions.
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We lose a heck of a lot, but we M.E.-sufferers gain very little, other than a great deal of pain & anguish.
On International M.E. Awareness Day, please consider searching for and supporting an M.E. charity whether financially &/or with time.
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[Image description: a tangle of blue ribbon; the slogan reads -
"help us untangle M.E." (sic)
© @batteredoldbook]
