2003 was the new ‘norm’ for a year in the life of my illness.
In January, I woke up one morning to find that my face was half paralysed – vertically! I looked like someone from a Francis Bacon portrait, not a good look on the High Street. My eyelids would not shut which was surprisingly problematical. Apparently, your eyes dry out in a rather unpleasant way without the natural lubrication provided by the opening and closing eyelids. Within a couple of weeks, I was back in hospital for more steroids. This set the pattern for the year.
An inner ear infection provided an additional, supplemental, enriching hospital experience and another opportunity to hone up my projectile vomiting skills – no spatter, no touching the hair, straight into the bowl – brilliant. Numerous investigations into sundry infections and problems followed this then three more hospitalisations, following relapses. I am so sick of hospitals, form filling in, medication, doctors, nurses …
In mid November 2003, over a four day period, having been stable for a few months, I lost all of the vision in my right eye. I spent the first week of December in hospital having more steroids.
I am now waiting (rather anxiously) to see (!) if my vision returns. It always has previously but the loss of vision has not been as bad as this since 1999 and it took ages to come back then. You do worry, each time, if this is the time it won’t. I also lost the use of my hands and arms too – so badly, that, for the first time ever, I could not transfer into the car and had to use cabs to travel everywhere which was very expensive and incredibly inconvenient.
We did, once or twice, try to use the NHS transport service, as they like to call it. We would call it the NO transport service or the ‘absolutely rubbish unless you like spending hours hanging about in the hospital or at home because you obviously have no life, no commitments and who gives a toss about your time’ transport service as we receive it … or choose not to, thanks!
Struggling to keep going at this point, I find that seeing others with far worse problems than my own continues to give me some objective perspective. It is so easy to become totally self obsessed about illness. I am sure everyone who gets ill becomes a little self obsessed. Having an awareness that however bad things are they could be worse, does at least make you (me) incredibly thankful for the quality of life that I do have and tempers the worst of my ill-humour about my circumstances.
So, I grit my teeth at the irritations – ‘let’s catheterise her, it will be easier for us.’ I remember the teenager crying for her mum, the mother dying of brain cancer, the contemporary with Parkinsons. I paste on my smile. If they can go on, so can I. I am no different from anyone else. My life is no better, no worse. We all have our shit to deal with. This is mine. Time to deal!
Merry Christmas to one and all, Jingle Your Bells now.
Perspective: a measured or objective assessment of a situation, giving all elements their comparative importance…