Receiving my IVig treatment

Here I am on day 3 of 5 being given an infusion of immunoglobulin. This is effectively a new immune system, not because I don't have one, but because my own is faulty and attacks the myelin which should protect my nerves and provide the insulation needed for the electrical messages to be transmitted effectively. I have this treatment in hospital, seated in a treatment chair, for about 6 hours per day. The least pleasant part is having the cannula inserted, but I am fortunate that this unit is staffed by specialist nurses who are skilled in the task, unlike the early days of my treatment when a doctor would do it. It seems to be an aspect in which they lack confidence, and they communicated their anxiety to me, effectively teaching me to dread the moment. A cannula can usually be left in place for one night, although you do have to take care and it is inconvenient.                                                    

The side effects which I notice are headaches and slight nausea, but these can be minimised by drinking lots of water. Going off to the bathroom while attached to a pump on a wheeled stand is a nuisance, so it is tempting not to drink so much, but you have to treat it like a job: processing H2O!

The other challenge is distracting yourself for long periods of time with limited resources. You can read, listen to music, do word puzzles. There is no wifi connection here, or radio or reliable mobile phone reception. We are seated in close proximity to one another, so there are strangers on either side of me. No conversations are private. From time to time you get to know a fellow patient a bit better, and it is a real bonus to lose yourselves in a chat for an hour or more. Sometimes, frankly, I don't want to talk, it is too much effort. Why am I tired? The underlying condition, the effort of leaving work for my school classes, the problems of getting ready for a day on a public ward when you cannot use both arms/hands to wash, dress or do your make up. 

There is an alternative way to have this treatment. Instead of coming in for a week every four months, I could come in for a day per month. I'm nervous about changing the regime I'm used to, and prefer not to be reminded more frequently that I have C I D P. I should probably review my attitude towards it. Pretending to be normal, ostrich-style isn't so intelligent, is it?

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.