I'm coming to the end of my second week of working full time. It was a struggle at first and I made optimistic promises to myself to have a proper break at lunchtime (even to try and catch forty winks). Of course I haven't done any such thing but I've managed not to work late...except for last night. It's going well but I have to remind myself that I'm not doing normal duties. It looks like I will finish almost everything before I leave on October 15th. but I have needed every moment. Things do take me longer. But my biggest achievement was to brave high heels and to risk the backwash at the hairdresser. At last, a fabulous head massage and no wet face and soaking sleeves.
I was told by my stroke consultant that the backwash would be okay, at my long awaited out-patients appointment last week. For those of you with an interest, the backwash is no problem for someone with my type of stroke, so it's worth asking.
The outpatients appointment went better than expected, even though I must have seemed intimidating, sitting with an open notebook, pen poised, frowning at him over the top of my glasses. I was given plenty of time and was able to talk through possible causes. It looks like Reversible Cerebral Vasoconstriction Syndrome is worth pursuing. I'll have another scan and a further outpatients appointment in December. Meanwhile the consultant is going to do some homework, as by his own admission, he knows very little about it.
He seemed aware of my concerns about my treatment. I wondered if he had read the blog but didn't dare ask. We settled on blaming Queens Medical Centre. It's always useful to have a third party to blame, it saves everyone getting defensive. It was typical of QMC that there was still no feedback from the scan taken on 4th. August. In their defence, the consultant felt that had there been anything to report (a need for surgery or some other intervention) we would have heard from them. I don't believe that is a good enough reason for taking two months to respond.
We also talked about my dissatisfaction with my discharge and follow up; that I had been left without information and guidance. I always try to bring solutions rather than problems, so for my next outpatients appointment I'll prepare a list of the sort of information I needed, which might form the basis of a leaflet to give to patients (how annoying is that!). I also pointed out that while the Stroke Association website is excellent, it's very thin on information about bleeds. So I got a lot off my chest and went away feeling that I had been heard, even though I might get nominated for 'Irritating Patient of the Year'.
I am happy with my progress. I still have problems with balance and being in crowded, noisy places. My head still hurts at times (although I learned that the brain itself cannot be the source of the pain) and I process information more slowly. But the 'fuzzy head' feeling has gone and even the persistent and common stroke survivors' problem of tiredness is less of a drag than it was. I have been very lucky.
No comments:
Post a Comment