ME/CFS - Challenges of daily living

"Christine Milner is one of 250,000 in the UK who suffers from chronic fatigue, or ME. Here she gives a personal insight into what her life is like.

You wake up in the morning with a pounding head, aching from head to foot.

Your arms and legs feel like lead, your brain seems stuffed with cotton wool.

You console yourself with the thought that by this time next week you'll feel better.

Except you don't. No medication makes any difference to the way you feel, and over the coming weeks and months various doctors and well-meaning friends encourage you to "just do a bit more each day", even though you have as little energy and as much pain as you did that first day."

This is the beginning of an excellent article on living with ME/CFS - the full article can be found in the Yorkshire Post of 04 March 2009 ... Learning to live with challenges of chronic fatigue one day at at a time

Slow Running

 

I doubt that it’s possible to resist this inbred protestant work ethic, and its consequent guilt trip. I’m the guy who, for many observers, seemed so laid back that, even when standing upright, my spine must have been around 45 degrees from the horizontal and yet, this gnawing guilt persistently upsets me.

For the past few years, for health reasons, I’ve been unable to undertake any employment paid or voluntary, each day being so unpredictable, presenting the unexpected obstacle or fresh hope; physical and emotional stamina rarely coincide even on the best of days. A major regret is that, when I was enjoying better health, I pushed myself that bit too far; my current ability to pace myself, to subsist on a lower altitude plateau, does not come easily.

A very good day for me, these days, means running at as high as 35% of what would have been a quite sluggish activity level for me a few short years ago, and yet, I’m still plagued by guilt. I ought to be doing more; forget the fact that taking a shower is frequently a daily task too far, cleaning my teeth an effort too much when exhaustion suddenly overtakes me, I should be doing more; I should be out there earning an honest living.

Of course the media, and politicians of all persuasions, almost daily attack anyone living on disability or incapacity benefits as degenerate scroungers. If only some of that vitriol could have been spared to attack the greed driven recklessness of the banking fraternity, or the many hours wasted (and billions of pounds lost to treasury) by those working out ever more devious tax-avoidance schemes for those who already have more income annually than most of us can expect to earn in a lifetime, our economy might now be in a far healthier state.

Perhaps in a few months time, when I chronologically comply with / qualify for the Old Age Pension, the “guilt” will flee from me. Somehow that could be the time for freeing up; it’s currently difficult to admit that I’m enjoying being a gentleman of leisure, whilst I so wish for the energy to be running in a far less leisurely mode.

collapse of the stoical front

Occasionally the stoical front collapses and tears catch one by surprise. That sudden inexplicable low, amidst the sundry serial and perpetual ailments that beset one, tips the balance. Is it the constant pain, the seemingly interminable incapacity, the sense of isolation resultant from that same invisible disability, or a more general existential angst? Perhaps it’s the combination, of all those things, that sets the tears flowing; for a while I teeter on the brink of self-pity and it proves a real struggle to regain my general positivity. [No sooner have the symptoms of a recent chronic bout of sleep disrupting sciatica receded than a case of TMJD (temporal mandibular joint dysfunction) takes pole position in the table of well-being assailants.]
I’ve always suspected that it’s much harder to witness and share the suffering of a loved one than it is to suffer oneself but, when one does suffer from any ailment, or dis-ease, the awareness that those who care for, and about you, somehow share your pain, intensifies the sense of spiritual suffering. The sufferer also feels guilty at imposing, on the one who loves and cares for them, some of the restrictions (on the socializing front) implicit in one’s own condition. I frequently find myself apologizing to my beloved for my, all too familiar, achingly fatigued condition, and the consequent wearyingly low stamina levels; it’s not that I blame myself for being ill but, to be honest, I’d prefer to be an enabler rather than a burden.

This posting is also on Mal's Murmurings.

But You Don't Look Sick

"Yesterday, I heard yet another person complaining about people being on the sick unnecessarily & get free cars etc. I do wish some people would realise that some people are disabled even though they look perfectly normal. To get any sickness benefits you have to go through rigorous medicals."

The above is an extract from an excellent, heartfelt, blog post on our judgemental attitude towards those people unfortunate enough to have an invisible disability.

To read the full post click here or copy and paste the following link : 

http://journals.aol.co.uk/peliad/the-oxcliffe-vixen/entries/2008/07/17/disability/1521