I'm Back!

Hello everyone! I apologise for the long break but...my mind has been on other things. More precisely my mind has not been working at all well. It still isn't but I've about adjusted to my new, cognitively-impaired world!

My sojourn in hospital (which is now thankfully over) and all the tests that were done have shown that I am experiencing a 'localised electrical disturbance'. The effects of this are that I have 'absences' during which I just freeze for 5-20 seconds (upto 25 a day), I have an occasional tremor in my left hand (annoying when holding a drink!), I have short term memory loss (I am forgetting a fair proportion of the previous day and it isn't coming back) and I am having cognitive difficulties (there are gaps in how I apply logic and how I process information).

This still all seems really scary but it is only temporary (if it were permanent it would have shown up on the MRI apparently). Recovery will take "weeks to months not months to years" so thats good.

At present I cannot drive, operate machinery, go to the gym, go up ladders, carry Ellie on the stairs or make decisions involving legal responsibility. Needless to say I am off work at present.

To be honest, the memory loss is not that troublesome ( I don't know that I've forgotten anything unless someone asks me about it!). The absences are sometimes embarrassing (eg having one at the front of the queue at Asda), sometimes upsetting (eg whilst chewing food) and occasionally damaging (eg having one mid-step on the stairs...big bruise and bump to show for it!). Its the cognitive problems that I'm finding the hardest. I've given up on puzzles, like word searches and sudoku as I simply can't do them. Following instructions, such as recipes, is weirdly difficult. Playing boardgames is challenging as I can just about remember the basic rules when I'm told them...if the game is simple. However, there are 101 things every day that I am finding considerably harder than they should be. This leaves me feeling very tired and 'headachey'.

I am trying to use my time productively.... I am reading lots (although I'm tending to forget what I have read) and tidying and cleaning the house. Even this is harder than it should be; I cannot multi-task and I have to think about every step of what I'm doing. Nothing is automatic at present.

Throughout everything Lisa has been an absolute star. She came to see me every day in hospital and brought Ellie every day. She co-ordinated visits from friends which were a real morale-booster. She has kept our lives running with as little disruption for Ellie as possible. She has been patient, understanding and reassuring with me , even though I am sure she has been just as terrified at times.

Although I can't remember a great deal I have not forgotten that I love Lisa and Ellie with all my heart.

Update

Just a quick update, before Ellie destroys the lounge! Socialworkdad is still in hospital, with no signs of a discharge date yet. He has had an EEG, and should be having an MRI today (if he can get an appointment). He has memory tests with a psychologist planned for Monday. Given that there are no tests planned for over the weekend, I’m trying to get him ‘weekend leave’ with the promise that I’ll do some good observations for them. (Although I would rather they speeded up getting the tests done!) He is no better yet. He is still having ‘frozen’ moments when he appears lost in thought which can last about 5-10 seconds, although he’ll snap out of them if you call his name. His memory is still very patchy. When he was admitted, he had blanks what had happened the day before – yesterday he couldn’t remember that Ellie and I had visited 2 hours previously. Socialworkdad is, as you would expect, bored with hospital life, and quite worried and stressed about what is happening to him.

Proxy Post -cancellation

Well I had my hopes set on 'the guys' coming round to play games with Paul a) to add a bit of normality and b) so I could get out of the house!

But Paul is too tired to play tonight....

Sorry guys! We'll let you know when normal service is resumed...

Lisa

Has anyone found my marbles?

I am having a strange week....as I posted previously I have had an ongoing lower backpain. My GP prescribed a cocktail of painkillers and anti-inflammatories to help me manage with this. On Sunday I had, what is thought to be, an allergic reaction to one of the painkilers; tramadol.

The reaction took the following form:

• I felt over-emotional and weepy.
• My mind felt 'vague' - I struggled to concentrate.
• I developed a headache which was like solid pressure - no throbbing or pulsing. This was so extreme that I periodically could not see clearly. (My eyes really hurt!).
• My memory became a little patchy.
• I felt really tired and physically 'achey'.
• I also felt nauseous.

Needless to say I stopped taking all the prescribed medication after taking it for just one day!

Lisa called the on-call GP who said that I would be fine by Monday morning....

I did indeed feel better come Monday morning. However, I was having to focus on concentrating (which is rather tiring). I had arranged a training day in Leeds and found this interesting but exhausting. On the way home I drove to the village where Lisa and I lived together three years ago by mistake (I had been talking about living there earlier in the day strangely). This seemed quite amusing at the time.

Tuesday morning I set off for work but ended up having to pull off the road, as I was finding it too hard to concentrate. It felt like a panic attack, without the panic; like a storm in my head from which I was trying to pull thoughts. I was also sweaty and with palpitations. When I had calmed down I came home and rang NHS Direct. They said it was probably a toxic reaction, rather than just the combination of drugs and I should feel better in a couple of days.

Wednesday - I awoke feeling much the same, and spent the day in bed pretty much - except for going to get my X-ray on my back... after queuing for 3 hours apparently they don't do X-rays of that part of the body!

Thursday morning, Lisa was fussing but I felt Ok and set off to work. An hour after I should have arrived at work, I realised that I did not know where I was or how I had got there. In a panic I rang Lisa, who advised I drove on slowly until I found a roadsign. It turned out I was in the Yorkshire Dales. Two hours in the opposite direction from where I work. I must stress that I have NO idea how I got there - or any recollection of the journey.

During the day, Lisa noticed that I had a few moments when I appeared 'lost in thought' however I have no idea what I may have been thinking, or how much time has passed.

The day ended with a thorough medical examination from the out of hours GP. This included head injury and psychiatric screening.

On Friday, I saw another GP, who noticed an apparent reduction in hearing in my right ear, and focusing difficulties to the right of my vision. I have been urgently referred to a neurologist (urgent meaning within 2 weeks!). I cannot drive, operate dangerous machinery, or be left alone in the bath, until more is known of what is happening.

Over the weekend. I have continued to have periods of being 'lost in thought', the pressure in my head has come and gone (repeatedly), I am still having to work at concentrating, and I appear to be forgetting occasional periods of recent time.

So in short, I have been medically assured that I have not lost my marbles, I have simply temporarily forgotten what colour and shape they are. I am feeling scared, and not in control of myself. I feel I cannot trust my thought processes or decision making. To those who know me well, it will be clear how unlike me this is. I am hoping that normal service will soon be resuming....