SEVERE ME presents many challenges to relationship. When Linda got ill it took us four years to get a reliable diagnosis that we were confident in, from the late Dr Betty Dowsett. She gave me the best possible advice. Reduce as much stress as possible in your life. Stop work.
Up to that point I had been trying to juggle running my Training business, providing care night and day to my totally dependent wife, doing all the house work and shopping, studying part time for an MA. Something had to give and it was not going to be our relationship or my wife's health - or mine for that matter.
I gave up my job 25 years ago and became a full time carer.
We have had to adapt, let go of the hopes and dreams that
we used to have and live our life in a totally different way
than we had intended when we married.
The lives of people with ME are profoundly unpredictable. It is
difficult to make plans when the person cannot foresee how they will be on a particular day, or even in a particular moment.
Plans often must be cancelled at the last moment, that is our experience, not everyone understands or can cope, many walk away.
More and more we have had to give up, on even the simplest of pleasures once enjoyed - going for a coffee, a treat, even a “walk” together in the wheelchair - those things have not been possible for many years. This can and does place a tremendous strain on everyone.
The illness is unrelenting in its assault. The longer you live with it, down all the years of untreated illness, the more you hear of people you know dying or sadly losing their ability to bear the severity of the symptom onslaught anymore; the extreme, unremitting pain and the host of distressing never ending symptoms, as well as the almost complete negation and neglect of the medical profession and the consequent isolation.
Many relationships break up under the pressure. How can anyone sick and bed bound or housebound then find a new meaningful relationship, when they cannot even get out of bed, let alone go out?
It is not easy, as Linda expresses in this poem:
Everything seems to be about letting go.
Letting go of everything you want to do.
Letting go of all you hope to do.
Letting go of all you enjoy
Until you are just left with space.
You are confined in a space
With nothing and no one in it.
You are emptied even of function and thought.
You seem barely alive at times.
You seem invaded by pain
And indescribable sensations
that completely alienate you
From everyone and everything
that you previously knew as normal
And so you let go
And find some strange
and unexpected
Within the space
and emptiness
of existence.
The processes through which people learn to live with ME are
poorly understood; they have not been rigorously explored within the academic literature.
The identities of people with ME are challenged when the
legitimacy of their illness is questioned, as is often the case for many.
This significant burden adds to a loss of previously established identity and makes the person more vulnerable than just suffering from the symptoms.
(From "Severe ME, Featuring Justice For Karina Hansen"


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