Hello there my dear friends I wrote a few weeks back about heading off to the job centre because I have recently been for my ESA assessment and was trying to explain to the ESA health care professional what it is like living with MS ….
If you’ve read my blog ‘who employs someone with MS ‘you’ll know It didn’t go down to well ….
Well I genuinely thought it had gone really well until the post dropped through my door …..
The letter stated that I am fit for work…..funny right !!!
I scored a big fat 0 across the board ….
I seem to them fitter now than before my diagnosis of Multiple sclerosis taking into account that on some days I can be almost semi-paralyed through parts of my body as the nervous system sporadically does the oddest of things to me !!!
I went numb when I first read the report …not ms numb …just gob smacked numb !!!
Panic set in …
I felt sick …..
then I cried… I cried a lot …the snot cry that is so unattractive …..
and then I got really angry…..I felt useless.. I felt a burden… I felt afraid.. I felt confused …
But its part of my journey ….
(Thats the Zen part of me speaking up …the calm I find pops up when I’m at my worst and about to melt down good and proper !!! )
I returned back to numb ….Numb feels safe to me …its a nothing emotion ….
I have decided that my best way of describing the new me is to label myself as the SLOTH but I have to stress that some of the nouns under sloth don’t quite match my ethos….
they never have and never will !!
For me now as long as a plod and don’t exert ,,stress or challenge myself my world or should I say my body I live in sits as comfortably as it can …..
I love the Sloth character Flash in the movie Zootropolis…..
In zootopia ‘anyone can be anything’ thats the motto of the city so why not have sloths working …
I love it when Flash says “I am doing just as well as I can be “and Judy keeps trying to finish his sentences due to her frustration with the situation presented to her ….
This is so how I see people when talking to me !!! ……..
I love Judy Hopp the young rabbit as she fulfils her childhood dream and despite being a ‘female’ rabbit conquers her fears, believes she can and then proves her worth …
such a wonderful character …
I watched this movie a couple of years back at the time when I charged around at 100 miles an hour juggling balls as I went about my daily crazy life and the character and all it represented really wound me up …. sloth speed was funny to watch but so frustrating …..but Flash was still working ,plodding and doing the best he could in a sloths body I guess….
I didn’t see him as lazy just very very very very slow !!!…
well thats How I choose to see it …lol …
Now I’m it !!!
I’m that plodding Sloth which for my loved ones a difficult thing to witness ….how ironic is that !!!
If I move around slowly and turn my head slowly I don’t get that dizzy feeling and my eyes don’t do that weird kinda dragging vision …
If I talk slowly I have a fair chance of finding my words to complete a sentence and I don’t gag on the sylvia build up causing me to choke.
If I eat slowly and take small manageable bites ,eat moist (don’t we love that word ) almost slippery foods and drink as I eat I stand a fair chance of successfully getting through meal times without dying and I can get through eating without causing intense jaw pain losing a chunk from the inside of my mouth or biting my tongue !!!
So for me Sloth speed is the way to go ……
How I find someone to employ me is my next challenge ….
I was encouraged by the DWP to sign onto job seekers… part and parcel of the course and boy certainly one heck of an experience……
The lady I was seen by was fantastically supportive and quite frankly flummoxed by the decision of the assessor so she put everything in place to help and protect my fragile state …. but after all her efforts a the DWP sent a letter saying that although I’ve paid NI and taxes for 25 years I wasn’t entitled to JSA because in the last 12 months I hadn’t paid my own stamp… ESA had ….
so no help no support no funding and no guidance for me ……I’m off to the appeal court but that is about a 38 week wait ….
I am settling into dealing with the confusing state of mind I am sitting with until I can see a proper panel of people who know a bit more about MS…
well a damn sight more than the anaesthetist who was my health care professional at the assessment ….
So with Flash in my mind and a little bit of self care and self love I am going at the speed of Sloth …..
and I’m choosing sloth speed because its the safest kindest way to be to myself right now ……
Lots of love Kirsten xxx