Stroke Diary (17): Signing Off

I hope this will be my last Stroke Diary, since on the 23rd. December I was discharged by my consultant. There are no guarantees. The stroke was without cause and having had one, it's more likely I'll have another. But for now, it's over.
I don't have a firm diagnosis. The consultant wasn't able to commit to Reversible Cerebral Vasoconstriction Syndrome (RCVS) but he did concede that I have a brain that 'tends toward vasoconstriction', which amounts to much the same thing.
I was taken aback by the results of my last CT Scan, which showed the area of brain damage. I thought I'd had a tiny bleed, so was shocked to see a dead, white area in the cerebellum, the size of a fifty pence coin. It's hard to accept that it will never recover; we're used to things healing. I've been left with problems with balance and fine-motor coordination, made worse when I'm tired, so I'm glad I don't work as a bomb disposal expert. The literature suggests I might also expect problems with working memory and processing information. And I thought it was just the new job!
I parted with the consultant on good terms; we shook hands, past tensions forgiven. It was Christmas and I could have some champagne. I could also be insured for overseas travel. There are two things which will never be resolved, so maybe it's enough to leave them behind here: I shouldn't have been left on an acute ward for five days without seeing a specialist and I shouldn't have experienced the confusion and delays that were attributed to the link with Queens Medical Centre. One minor thing still puzzles me, that hospital wards don't think they need to provide a hairdryer. Even if I buy one for both wards, would they offer them to patients? When I asked, it was as if I had requested a hedge trimmer.
Thank you for reading this Stroke Diary and particular thanks to Peter Levine for linking my blog to his: The Stroke Recovery Blog. For a short time I had many more readers in the USA than I could ever have expected due to this generous link. If you have recently had a stroke, or if you are still on the road to recovery, I wish you well.

Stroke Diary (15): High heels and the Backwash

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.

Stroke Diary (10): 'and the hardest part...

...is letting go, not taking part', as Coldplay sang on X&Y. To borrow another phrase, this time from the author Margaret Cezair-Thompson, I have to 'small-up' my life. By the time a week has passed since my discharge from hospital, I'm learning to manage this recovery thing. My friends and work colleagues keep me in mind and I have many visits. We go for walks or coffee and they generously bring meals for the freezer, cake or gifts. But I'm learning that I can manage about an hour at most, that outings and visits must be balanced with rest and that if I achieve one task or job in a day, then I'm doing well.
Letting go of work is the hardest thing. I have to accept that a project close to my heart may have to be abandoned because I'm not there to steer it. I can't influence the decision. It's theirs to make and mine to accept. What's clear is that I'm not going to be back to help with it. The headaches persist and finally, I check in with the G.P. She's clear that a return to work, four weeks after the 'event', is being over optimistic.
But I am making progress. By the end of the week, I've abandoned my stick and I think I'm walking almost normally. There are definite periods when the buzzing in my head has lifted. I take a taxi to a pre-arranged appointment with my beauty therapist. Why cancel? The need is desperate. The taxi drops me half an hour early and I'm made tea and taken to the relaxation room, where I recline on a day bed and watch the sparkling lights in the ceiling. I've never had time to use the relaxation room before. But I'm worried how the back of my head feels when I'm flat on the table.
The next day I go to the hairdresser, again for a pre-arranged appointment and after checking on the internet, I don't use the backwash since there is a link between the backwash and stroke. I kneel on the chair and lean forward over the sink. My face and sleeves get soaked and I miss the head massage. Some advice, specific to cerebellar haemorrhage, would help so much. I don't know if I should even be doing these things, particularly as another bleed might leave me seriously impaired.
I speak to the secretary of one of the consultants. She doesn't know if there's anything to report from 'Nottingham'. I say that I feel I've been abandoned without advice and guidance. I can feel my frustration and anger rise and I waste hours mentally drafting a letter of complaint. I have to reign in my outrage as I can feel the harmful stress levels. I've always believed I deal with stress well but that's intellectually. Who knows what's been going on physiologically? I decide to use my feelings to improve my blog, even if no one ever reads it and I'll aim to make the best use of my outpatient's appointment, when it comes. Complaining will only make the medics defensive and I need them 'on-side'.
I investigate the link between vaccinations and stroke on the internet and there doesn't seem to be anything but I'm not convinced as both arms still ache from the jabs I had on the day of the stroke. I also find some potential leads to account for my own stroke; AVM or Arteriovenous Malformation or a condition called Reversible Cerebral Vasoconstriction Syndrome.
When my children were small, I had a tendency towards hypochondria. I couldn't imagine them growing up without me and this made me fearful about my health. I dealt with it using strategies based on cognitive behaviour therapy (CBT) and I may have become too dismissive. I now know there were warning signs I shouldn't have ignored.
In the first week home I gain 3.5 lbs. in weight, which is half a pound a day. A friend points out I've got bigger things to worry about but at this rate, I'll be huge in a matter of weeks. The main problem is a lack of exercise but one thing is certain, I'll have to 'small-up' my portions as well.