2014...will there be positive changes for people with M.E. ?

Another year begins and, like many others, I start it with good intentions and a collection of aspirations and dreams. In my case, any dreams I might have are hampered by chronic ill health and a lack of energy so that, rather than drawing up a 5 point plan (as I used to do when I was in better health) I haver about what should be a priority and what is realistic in my situation.  This is akin to having a split personality with one side of me encouraging big plans and really 'going for it' and the other side standing to one side,  wagging a disapproving finger and tutting at such foolish notions.

In the back of my mind are all the people I know who also have M.E.,CFS, Lyme and  other misunderstood and poorly diagnosed conditions which take a massive toll on energy and any internal resources to plan, move forward and achieve. In particular I think about those friends who are at the severe end of the spectrum of these kinds of illness and who spend their days simply surviving from one minute to the next; breathing slowly, counting the seconds, minutes, hours and wondering what the next day will bring.  I've been there too....in that unbearable dark place where you never quite know whether you will survive the day or really want to survive the next one.

Still, for me, that is the past and in more recent years I have been able to do more within the carefully managed pocket of energy in which I exist.  All the same I  wish I  could identify what made the difference; what brought me forward from severe to moderate.  I have no idea, really, how I got from being so ill in 2001 ....all day every day in the dark with no stimuli, nauseous, in pain, giddy, terrible headaches etc etc to where I am now.

Time ? Resting ?  Luck ? 

What I do know is that any improvement is terribly fragile and one can never take one's 'eye off the ball'.  It's so easy to be duped by apparently feeling well enough to do stuff and then, too late, realising the damage that's been done --- as I discovered about four years ago when I became over-confident and deluded and soon went sliding back down the 'snake'. It took me nearly two years to climb back up the ladder but, even so, every relapse seems to take its toll and you never quite regain all that you lost.
 

It's easy to be encouraged by people who care about us. They want us to be better because they care and so they encourage us to 'try'. Loving them back we want to please, to respond to their caring and easily fall into the trap of trying just that little bit harder than we should. The thing is, so many of us look reasonably healthy ('..but you look so well ....' !) and so I suppose outsiders can see no reason why we shouldn't/wouldn't accept their encouragement.. In my case, I also have an internal script that constantly doubts how ill I  really am and constantly questions how much I could do if I did try harder, wasn't so flaky, wasn't such a wimp. This comes from years and years of living without a diagnosis and being told my symptoms were psychosomatic and caused by anxiety, depression, or some personality flaw, weakness. It makes my whole situation very precarious..

Within my group of M.E. friends, there has been discussion about support groups and forums --- how supportive they really are and how an air of competitiveness can creep in about who is the most ill, who deserves the most sympathy.  Personally, I don't think there will ever be a really safe place to go until we have proper tests that verify our illness and the particular condition we have. I think we are all in slightly different health situations which have been collected together under the umbrella term of M.E./CFS and so there are bound to be doubts and discrepancies which lead to jostling about who deserves more help, more pity, more understanding and the medical establishment has created a situation which is divisive and unhelpful. Over-stretched NHS services for people with M.E. are based on the premise of CBT, GET and drugs being the best treatment for our conditions. When those treatments don't help, patients feel let down and misunderstood. They begin to try and help themselves and search for more effective treatments when they have no medical knowledge and no real understanding about physiology, how vitamins and minerals and the processes of the body work together,  accepting the 'expertise' of all manner of theorists and (at worse) charlatans.  The whole scenario is a mess.

So where does that leave us at the start of another year ?  Well, for me, I shall hold on to my hopes and aspirations but try to keep them within manageable bounds. I hope that 2014 will be kind to everyone but, in particular, I wish with all my heart that my friends who are 'down there with the snakes' can find a few rungs on a ladder and begin to haul themselves back up towards better health