not new career
not a new life choice
not a change in direction
not a move in any way
not new educational chalenge
my target is : a day when i have enough ME there to sort out the cardigans and jumpers in my wardrobe.
THAT in my life is both a target, a challenge and a huge undertaking.
i OBVIOUSLY have to plan this enormous venture.
- one shelf of jumpers on to the bed
- i have 10 shelves
- me sitting on the bed
- sort the woollies into: throw outs, put away for ow, and back onto shelf
- i will be sitting for the duration.
This is the reality of life with a chronic yet cruelly invisible illness.
i spoke only yesterday about a “flare-up”. but every day is a challenge.
- i have a chiari malformation
- that probably means very little.
- and to be honest you would look at me, and as many friends did yesterday comment on how “well” i am looking – therein lies the crunch.NOTHING LOOKS WRONG….but so much is…this was the picture i posted to facebook as i loved my new jeans… #abfab and #subtle…not…but make me happy jeans.
- everyday i have some degree of pain
- i always have areas of numbness – mainly in my feet, less so in my fingers, quite noticeable in my face and scalp, and in the lower half of my right leg.
- i suffer with LUDICROUS fatigue. I don’t show that… it’s not something that i announce but it is life limiting… Every cell in my body is exhausted…even before i get up in the mornings…HOW do i describe a nap without making it sound like a luxury? it is a necessity for my brain. I arrive at a time every day – often several times, and often not long after i get up…when my brain SHUTS DOWN. That’s what it is effectively. It will also waken up and feel refreshed – like an aging PC. But it is NOT a nap…it is a level of complete mental, physical and emotional fatigue/exhaustion which i can not fight.
- bending forward, increases the permanent dizziness as does moving quickly..the dizziness is part of the difficulty- i work on balance with a physio therapist…vestibular work. Where you step forwards and back and invariably lose balance. THUS the walking stick… Hazel. If i had a fiver for ever time i was asked how was my knee? my hip?
- i sit. i sleep. i save myself for perhaps an outing to cinema, watch a gaelic match, a funeral to sing at, a visit to mammy’s grave….LAST week i decided and planned a shopping day away, and i LOVED it. Me and my children, my overworked other-half who has over time had to become the me AND him…while i sit as a shadow where the capable ME was… . We also brought my daddy. Dya know it was a GREAT day. I really enjoyed it.
- it was my FIRST day out since SUMMER time. Since then my very own wheelchair MADGE has arrived. i have no issue at all using Madge…she is a requirement an extension of me and my condition, i guess.
- i had to ask advice on “how to wheelchair” in a self propelling model, and also in winter weather. The what do i wear? where does my handbag go? do you bring a blanket? a coat? I didn’t mind that. And on the day after an initial diva strop- as i really wanted to propel myself, we agreed that i could, and when we moved for instance from street to street, I asked to be pushed.
- all the drugs were packed and dispensed by my hubby as always – and i REALLY enjoyed the day.
- but look at me? would you KNOW i am crippled to this extent? When i occasionally stand up and take the stick, do i look like i have no NEED for the chair in the first place?
- would you know at any of the weeks pictures that i am ON BIG mediation…controlled drugs…and that 2 weeks ago i had a few days in hospital rolling in pain? nah… thought not!
ME on a page.
can you see any of them in the pictures?
am NEVER going to lie-down and embrace my condition and become a “WHY ME?” advert – i try to deal with life in a take the mickey out of it way. i laugh at the chair… make witty comments when i almost know people down…but my sense of humour and love of my family and my music make me manage…
of COURSE i have my days of feeling it is NOT OKAY…and i realise now …that THAT IS OKAY…i can be human!
but setting targets.
THAT breaks me every time…THAT is the cruelty of an INVISIBLE ILLNESS…and even more cruel when the disease classifies as RARE as even when people know you have a thing in your brain, they don’t know what that implies.
So when you are setting your NEW YEAR RESOLUTIONS… i am HOPING for the DAY when i feel able to sort out my jumpers and cardigans… GO ME x