My LEGS… :(

at a glance thro my history i seem preoccupied by LEGS…MY LEGS

although at least recently i decided to name my wheelchair “LEGS” as the poor chair, in essence has had to replace what my legs used to do.

but i have thought a lot and worried a lot and blogged about them so much!


what kind of pain is it?

Saturday Legs Chiari style

leg weakness

chiari- leave me my legs please!

meningitis in my legs


I guess there is a train of thought there, a deep seeded worry, a stupid hope even that “i can manage at the level i am at- just please not any worse”.

but that DOESN’T happen.

my prayers seem to fall on deaf ears too often.



my TOES are getting worse.

Was dropped down to get my toe nails done- gel toe nail varnish issue


was having my TOE nails painted – first time since last summer.
so had to put my weight on her towelled knee -one foot at a time.

told clearly to relax and just lean all my weight on beautician’s KNEE/towel as she “Had me!”

So she started with the nail file -filed them and did prep..

 -and for the first time EVER,  my 3 numb/rubbery toes did not have strength to stay strong , or the right way… their KNUCKLES keep popping outward instead of up! As if had become overnight double jointed.
it was GROSS feeling for me and a bit scary as it is new.
am quite sure is a form of muscle loss?
is it another lovely chiarian dead nerve issue?
of course somewhere in mt mind i knew something would change, i knew that through last winter i had never felt sure when putting on my boots that the wee toes were lying flat and straight as they should be, as i had so little feeling in them, or messages from them.
peripheral neuropathy
muscular wastage
new hypermobility?
call it what you want…
it’s THERE.
I ordered a pair of supportive sandals which my 22 year old son will definite include in what he calls my “lesbian sandals”…lol…lesbos
as opposed to wee flip flop?
it’s the lesbians every time.
THANK GOD there are still statements i love 🙂
BUT apart from that giggle, the reality scares the crap out of me.
I have emailed my NS and asked him can i do anything or if he can thing of any thing we could try…but really i know he hates this chiari too.
What is next?
my hands?
my 3 numb fingers on each hand?
will my piano playing and knitting beat my decay and decline?
probably not.
I am petrified.
i HATE this chiari.
and its symptoms…which keep on appearing and staying!


  1. I came across your post at a time when I’m wondering what I’m going to do about my own neuropathy, which seems to get worse every day. I fear losing the use of my legs and arms, but I guess what I’m really afraid of losing is my bladder function. I can’t decide if I want to see a doctor or not, because what can he do? Surgery is the only answer, and the possibility of making my pain worse has convinced me that it’s not worth it.

    Do those sandals come in other colors besides white? And how odd would I look if I also wore socks? 🙂

  2. LOL… LOVE the sandals and you know what go for the socks. i am definitely not going to be apologetic and dress safely in the wheelchair. my fingers are floppy but less so than the toes but it is scaring me… i DID contact my Nerurosurgeon and my OT to see if either thought of anything they can do… but… am probably guessing, like you. but they are or even had i currently a physio THAT would be worth a NEW blast as we hit a NEW stage… scary init?

    • It is scary, but nothing is more scary to me than an increase in my pain levels. Of course, I say that now, before I’m in a wheelchair. And losing my independence is really just as scary. Oh well, one day at a time, huh? 🙂

      • i have to keep hold of the “straws”… that there is ALWAYS more help for pain… that i won’t get WORSE than this-ish….. and there is always something we could try…..
        now a huff and a puff……
        and ….
        thank god for other similar voices x

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