Being told I have CIDP

Growing up in a farming family in the sixties, many jobs were left longer than they ought to have been before getting tackled. The positive side to this culture of postponed and neglected jobs is that when they are accomplished, the improvement is all the more impressive. So the proud completer of the task would step back to admire their work and say "Eee, lad, it's a king to what it were!"
Well, I'm a girl, and have lost my Midlands accent, so my blog title is a re-working of that old saying.

A few years ago, I was struggling with fatigue and weakness in my arms and legs. The symptoms had been present, on and off, for the best part of thirty years, having occurred first of all in my first year at university. Diagnosis was elusive, until nerve conduction tests were carried out and interpreted on the spot: Chronic Inflammatory Demyelinating Polyneuropathy. No-one could offer a cure, but they did expect to be able to stop it getting any worse by giving me regular intravenous immunoglobulin.  Cautious optimism was the outlook, but I was told how slowly nerves recover (one millimeter per day in optimum conditions, if I remember correctly) and encouraged to get on with life, to be grateful that my condition was nothing more sinister or with a worse prognosis. To be told "You'll just have to manage" seemed harsh at the time, but it became a mantra, because there would be no cavalry appearing on the horizon to make it all go away. Frustration would be inevitable but experimentation, editing, changing expectations and just plain hanging on in there have, so far, proved that I have just had to manage, but eventually I can look back and see that my health and energy levels are indeed " a king to what they were".

No man is an island, and I have been fortunate in a husband, family, friends, hospital staff and colleagues who have stuck with me. The number of people who have a grasp of what CIDP feels like might be extremely small,  but lots of people with rare and hidden disabilities have to accept that kindness and the willingness to give specific help when asked, are very widespread in the population, and misunderstandings are not willful.