A Fog in my head like no other…..

In fact it wasn’t a fog at all, more like an electrical storm in the diseased part of my brain….

I typed this in the evening while it was subsiding….my fingers being controlled by a sunnier part of my brain totally separate…Imagine the brain as a map of the world and my fingers live in Australia and the electrical storm was in the UK……and my way of dealing with what was happening…

I was in London for our ethics meeting – playmates in discussion with like minded academics. I spoke of the bad day in that blog…..

https://whichmeamitoday.wordpress.com/2020/02/13/another-trundle-back-down-to-london/

But it was more than being discombobulated but took me until the evening to be able to assess what was going on.

The day had started off badly, being rushed, losing my stick, getting lost, but now I realise why. I usually call it ‘The Fog’…but this felt different. When the fog descends I can make little sense of the world around me – the time, the people, the place – but this time I knew where I was, I knew the people, but this electrical storm inside my head was causing different problems….I often use this analogy to describe how dementia affects our ability..:

We have a complex brain disease, our experiences are individual. Image the brain as a string of fairy lights. Each fairy light representing a different function of the brain. Some lights flicker on and off – dementia affecting our ability to do something one day and then we’re able to the next. But when the light fail altogether that’s when dementia has won and has taken that ability away for good. But different fairy lights flicker and fail for each of us. That’s why I can type and other can’t; that’s why they still cook and I can’t; that’s why they still feel hunger and I don’t. That’s why I can speak and they can’t. I can type words far quicker than I can think and speak them because that part of my brain hasn’t been affected others can’t type but can speak better than me. Typing is my escape from dementia.”

 Well last Wednesday my lights were certainly flickering on and off at an alarming speed…in our meeting, we’d been asked what we need to consider to set up our own ethics committee …..working in pairs, one person with dementia, one academic. I usually relish this kind of brain work. But this time I found this head blowing just to understand what I had to do…….

I understood the words in the question and understood the words on the flip chart for each section but my brain couldn’t put the two together. I couldn’t connect the 2. I could see the question, I could see the heading on the flip charts where we had to put our answers, but my brain wasn’t capable of connecting them…. It felt like there were flashes in my head as the light bulbs of dementia tried to combine question with answer…..for a while only 1 lightbulb would work at a time….it felt like an electrical storm in my head…

Philly offered me the chance to go sit outside in the peace of the courtyard, but I knew if I did, I wouldn’t come back in. I needed to ride out this storm, try and settle the confusion in my head.

Conversations around the room felt confused and loud. It was so disturbing. I tried to fight the need to scream, to escape to silence, to try and focus…imagine 20 people talking directly to you all at once and trying to make sense of what’s happening, trying to pick out one and them all becoming confused…..that’s what it felt like, even though I only had one person talking to me….or standing in the middle of the motorway trying to dodge the high speed cars……

As the day went on, the light bulbs, one by one, began to stabilise…the electric storm coming to an end, the flickering becoming less, slower and gradually I was able to connect questions with answers…not quite as usual, but I was getting there, able to contribute in some small way. It felt like I was being taken out of normality and into MY reality and the two not combining.

It was as the headaches came and went in the evening and the tell tale bruising appearing randomly on my body, that I did wonder if it had been a TIA (mini stroke)…I’ve had them before, just not like this. The medication dispersing the blood clots forming by creating bruises…..the vascular part of my dementia suddenly rearing it’s ugly head….who knows?

This may ring alarm bells in the heads of our ‘able enablers’. What they should do in these circumstances. I can’t remember if we have things in place already 🤔, but maybe having a quick check list of our wishes in order for them to avoid having to make emotional decisions would help? For example, them knowing my RESPect form is always in the front of my haversack. Not sure how practical this would all be but maybe worthy of discussion. The fact that I would NEVER want to be admitted to hospital….although I think I’ve said this often enough 😂. So difficult for them when placed in that position.

Some may say, Why didn’t I seek medical help?…..simply, because I rarely do. I feel medics know little about my dementia and I understand it best. I didn’t want to put those around me in a difficult situation. No way would I have gone to a hospital, as living alone, who knows when I would have been allowed to escape. I much prefer to deal with it myself, to ride the storm….

 After all…the medical world seems to know soooo little about this most complex organ in the body….

 

About wendy7713

On the 31st July 2014 I was diagnosed with Young Onset Dementia. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

34 thoughts on “A Fog in my head like no other…..

    1. Oh Wendy, your so brave to fight through that blasted fog! I’m no Physciatrist but I’m sure that awful experience you went through on Monday has had some lasting effect. Your still amazing. Love n hugs x

      Liked by 1 person

  1. ‘Like’ seems wrong for this post Wendy. ‘Appreciate’ might be better, I don’t know. I do know that you give such an eloquent account of what dementia means for those living with it. You are doing something so very valuable. Thank you. xx

    Liked by 4 people

  2. I”m deeply moved by this brave and fluent articulation of what you went through Wendy. I have printed your account out and will keep it pinned on the wall of my study. I applaud you.
    Jan
    x

    Liked by 3 people

    1. Amazing account of your experience. Should be printed and distributed to doctors, researchers, clinicians, professors, anyone working on understanding dementia. Your articulation of that day and illustrations are invaluable, even to the layperson. We are in awe of you.

      Liked by 1 person

  3. Hello Wendy, I think your willingness to describe and share your experience and point out the variety of symptoms some of which you experience, some of which others experience and you don’t is a tremendous resource. Your recent experience is probably frightening but you keep us in contact with you. Thank you Wendy.

    Liked by 4 people

  4. Wendy, I never miss a day reading your blog. Today’s has left me feeling a very deep gratitude and respect for the value you are giving to the world by sharing your whole being with us. Thank you.

    Liked by 3 people

  5. I understand your reluctance to get stuck in a hospital as I spent 14 weeks and 1 day in one in 2007!! I’d had an M.S. relapse.Previously my husband and I had managed as we preferred to be independent.Then I needed additional care and it took all that time for Social Services to sort it out.For 12 of those weeks I was merely “bed blocking”.I admire how you carry on through everything you experience due to dementia.

    Liked by 1 person

  6. I so respect your honesty in describing your experience-anxiety inducing, and scary for you though it is. Don’t stop! Even if you feel you cannot write the ‘right’ message please carry on, as we need to understand about the different ways our brains work and function. You’re inspiring!

    Liked by 3 people

  7. What a frightening experience, Wendy. Glad that you have got over it and thank you for telling us how you felt. It really brings home how different it can be from person to person.

    Liked by 3 people

  8. Reading about your experiences has given me so much insight into what dementia is all about. An old friend has recently been diagnosed, and your blog has really helped me to understand her life.
    I myself have MS and can’t walk or drive, but my brain is in good working order which means I can read, watch tv and listen to the radio.
    I love reading about your travels and adventures but I’m not envious as I know how hard your world must be. I’m glad you have supportive family as I do, keep on Wendy, and bless you

    Liked by 4 people

  9. Wendy, thank you so much for sharing this experience with us. You amaze me with your ability to articulate what is happening to you. I think my husband has similar events but he is unable to describe them and they are quickly forgotten. I am so sorry you are going through this, but grateful that you have been determined to share the highs and lows with us. Thankyou.

    Liked by 2 people

  10. Thank you for writing about your experience, hard though it must have been. I hope it helps when I say I was feeling for you throughout your account. Keep going Wendy, we are all with you.

    Liked by 1 person

  11. Well done for getting through that day and being able to tell us about it – you are such a treasure to those of us caring for friends or family who also experience the fog. I am so grateful to you. Sent with love x

    Liked by 1 person

  12. ‘After all…the medical world seems to know soooo little about this most complex organ in the body….’

    Indeed. I was diagnosed with an ‘incurable’ mental illness when I was fourteen years old. That was more than fifty years ago, as I am now in my late sixties.

    Many doctors and therapists have told me over the years that I was misdiagnosed as a teenager. There have been several theories about what was really ‘wrong’ with my brain in 1968. The consensus seems to be that I had PTSD, post-traumatic stress disorder. My original misdiagnosis happened because PTSD did not become an official psychiatric diagnostic label until 1980.

    I really don’t know which diagnosis is correct. In my half century of living with ‘mental illness,’ I have come to the same conclusion as you. The medical world knows very little about the human brain.

    Your writing is wonderful, Wendy. You are wonderful. Although my mental struggles are different from yours, I know how hard the daily struggle is, trying to get your brain to work properly.

    i am sending you big HUGS from New Mexico, USA. ❤❤

    Liked by 1 person

  13. Quite difficult to respond to your most recent blog apart from recognising that we can be pretty sure that you will not allow these ‘interventions’ to distract you from the ‘positivity’ that you present through the words of encouragement you share with your thankful ‘audience’. Thank you lovely ‘lift-us-up’ lady!

    Liked by 1 person

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