Some exciting research revealing a new part of the lymphatic system previously undetected in the brain...
I'm sure some here know far more than me, yet this begins to make sense (in my newly informed eyes) of oxidative stress and build-up of a sludge of waste cells, which could (possibly) go some way to explaining some of the experience of this condition. Link comes from Cort Johnson's excellent site 'Health Rising'
I personally experience an awareness of viral activity/immune reaction/inflammation/heat beneath the skull, different from a headache.
Needless to say, the GP looks at me with incredulity when I attempt to describe this, saying that viruses can't get past the brain-blood barrier...
I realise we'll each have unique versions of this condition, and I'm a believer in different phenotypes, yet curious whether any of us have had opportunity to explore lymphatic drainage (where possible, well enough and with funding to do so)? And if so, I wonder if this felt helpful?
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RockRose
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Interesting I wonder if the link with microglia that were making the news last year
phoenixrising.me/archives/2... is a possible reactivation of glial cellswhen lymph drainage prevents drainage. Wondering because the reasons for inflammatory response seemed sketchy on relapsing remitting fluctuations without clear causality.
And your thought feels most relevant and interesting. I wonder, have you considered posing that idea elsewhere, where those in research communities may run with it? Feels valuable. Appreciating all your reflective, connecting ways of bringing dialogues here forwards...
Blocked sink getting nasty the first thought of a non medical when drainage was in the research. I like game changer that's a very positive uplifting statement.
I am finding it nearly impossible to get through information like this lately. I read and reread the same stuff and can't even remember half of what I read that I have already read several times. The new stuff doesn't seem to stand a chance. My comprehension and learning and distraction levels are really way off the chart in terms of problems.
I blank during tv shows and thank goodness for being able to watch on my computer and scroll back or I'd never be able to catch dialogue and remember it from one line to the next. Ian says to jane... Jane says to Ian... I think Why did she say that?... and so on. (Eastenders is becoming a chore instead of a ritual lately. : (
I was reading a novel by a favourite author a couple of weeks ago. I put it down for a few days as I was not well. When I came back to it, I had to back track several chapters to get basic understanding of any reference that was made to what already happened in the story. I couldn't even really remember the basic plot too well.
I really hope this changes soon, as I've had enough of the brain numbing sick feeling and really need a break. Still having significant heart/VO2/orthostatic intolerance problems and hope that I can get some attention to it soon.
Maybe I will get enough better to read all this exciting scientific stuff and understand it.
Dear Budgiefriend, thanks for such honest and real sharing. I totally empathise and understand what you share, including
some natural frustration and also yearning for more wellness...and I'm joining you in hopes of getting better with all my heart...
Could it be that our bodies are wise guides sometimes?
Sounds as if your body is guiding you away from some activities at the moment, in these recent weeks, whilst you're awaiting some genuine and long overdue medical attention...and I realise you're braving-through.
You know, Budgiefriend, I recently learnt (and also long know from experience) that visual processing uses high energy...
And I've recently read a recommendation for us, that suggests minimising screen time, preferably to 5-10 minutes at a time, for that reason, then taking a real conscious rest or 'switching' to a gentle activity that uses another part of ourselves (e.g. something more practical, like getting a drink or possibly 'waterplay' as I like to call washing up...among other physical possibilities)
Wonder whether its worth exploring this a bit?
Could there be a different, yet also satisfying way to enjoy programmes and books, that's easier energetically and kind to the body's needs..perhaps audio-books, rather than the more intensive visual programmes?
For myself, I often take electronic 'fasts'...to relieve my whole system from that kind of processing.
Also I sometimes 'listen' to rather than 'watch' programmes...though I adore the visuals of nature programmes, so I sometimes 'watch' these without the sound and for me that feels better. Like you I'm also auditory and musical...and we are living in a highly visual culture...I wonder how many other friends in our community also naturally tend to audio too...
Wonder if some of these areas are worth exploring...because with our electronics there are so many temptations for a lively-minded curious and vibrant soul it can be all too so easy to over-extend.
Just a few thoughts, in case makes sense for your situation, which you know best of course...and all warmth for the discovering and fine-tuning...much more to say, for another day. Hugs
Thank you for such useful and common sense thoughts and suggestions, RockRose. I have been resisting and being stubborn.
My orthostatic intolerance has swung into high gear. Couldn't even sit on my perching stool long enough to brush my teeth this morning. Really feeling very limited and frustrated.
My eyes and mind crave constant interaction and stimulation. I can't explain why music and closed eyes don't seem to be much help now. I wander off, and I get restless. Cognitive dysfunction is more devious and weird than before. I am listening to music while looking at emails at the moment. I have ordered a no glare screen cover that is rather expensive for my new phone, because using it for the apps I've already talked about on here is hurting my eyes, although the apps are going to be extremely important for me to communicate details and work out how to manage pacing, etc.
I now have to lie almost flat much of the time. This is gradually changing from me sitting almost upright in bed most of the day and evening only a year ago, to now having to lie flat much of the time, with my computer on the hospital table over my bed and At least I have the ability to still do this, but eye strain is problematic, as I am too stubborn to stop and rest, as you explain.a keyboard on my lap, arms propped by pillows.
I am going to do what I planned to do several months ago, and listen to some audio books on librivox or gutenberg project. They have thousands available for free. I was going to begin to be a volunteer reader for them, too, but never managed to get started, thanks to various practical problems with my health and care.
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