Hazel is my cane.
When I bought Hazel last year, I had been thinking of a nice foldable, pretty, flowery stick. Then i thought that was a bit apologetic. i needed in some way to make a statement… “YES! i got a stick”.
i didn’t use her all the time, just when i knew I would be standing for long periods of time.
My CHIARIAN symptoms have become more persistent.
I have had surgery almost 7 months now- since my main procedure, my decompression…and 5 since my shunt.
The first few months after hospital i SAW improvement. I mean initially i couldn’t walk to the bathroom without feeling there was a BUS on my head!
this last month….nah….pretty STATIC …i know i have to remember that i have had major brain surgery.
BUTthings have really stopped changing. I maybe accept this too quickly, and my husband is the other end of the scale- refusing to admit it’s not still early days…BUT
- my legs ache…SO BADLY
- my shunt still moves and tweaks me
- i am still so tired
- my eyes are blurred and hard to focus.so the feeling of being “out” and moving in a crowd that are also moving is exhausting – like walking INTO that scene.
- my brain is still slow to process so even the overload of information that “sitting at a gaelic match” gives it is tiring.
- had idealistic “walking” “getting fitter” plans… but can’t even move without being shattered.
- I HAVE THEM ALL- not the “other findings”…actually i do have some of them!
- i will ALWAYS have them all.
- perhaps not always in the same mix or intensity as a cocktail.
- headaches medication i find draining especially the tramadol and the codeine…
SO THIS is my nest….my cushions…. my laptop…my world!
and it kinda HAS been for months…feet up on the table in front of me with a soft cushion.
this is SOOOO longis now wearing me out in new ways….i am out of circulation so long that people forget about me…i am so unable to do anything normal.
THIS has become either my NEW BASELINE…at my most negative.
OR have PLATEAU in recovery …at my most positive.
either way it involves acceptance.
THAT is tough.
not TOUGH as in there are so many worse than me…but its that moment when you acknowledge that things have stopped changing.
and husbands do that at different speeds too!
to make it more painful for me, or maybe it started the realisation, when my youngest son asked me about a month ago “mammy are you never going to get better?” – and it was not an impatience – it was his realising that we had just spent a day at the beach when they explored rock pools and i parked myself on a rock – and i LOVED the sea…but he noticed no more rock pools.
He asked “would it not be easier if had a wheelchair” – which we chatted about.
But i thought there was a STAGE.
I thought someone told you “IT’sTIME”
I dunno what I imagined it would be…was i going to waken up one day and the numbness in my feet have become a loss of the use of my legs? neurologically?
was it going to be falls? either by strokes – on the exciting side . or balance problems on the bland side of the options.
BUT THIS WEEK I turned a corner.
I realised that we, the family we, couldn’t go abroad this year as I simply would not be fit to potter about any resort in evenings.
Quite possibly I may not be advised to fly because of intracranial pressure…but that would not be me blaming me sufficiently!
for i am an irish Mother. the GUILT that goes with that position is overwhelming.
in that Irish mother mode i realised:
- we can’t go on holidays
- i don’t go UP to hug my children at night
- i do a football match and i then need a “recovery” day – pathetic but real
- i watch the children.
- i sit
- we have cancelled a weekend in Dublin. WE LOVE DUBLIN…Temple Bar is a family thing we do. I couldn’t so we cancelled.
- last week i went to an award ceremony…i was shattered SITTING, WATCHING and concentrating…
- next week we have the Foyle Cup – the Annual big soccer tournament where we go for a mini- break in the BUZZ that is Legend-Derry during that competition.
- i had to buy a MUMMY -chair last year as i realised the stool from the previous year didn’t give me enough back support.So had a wee chair.
- But THIS YEAR I WAS STARTING TO REALISE I NEEDED MORE>
- But i thought and i asked the support page i use “who tells us when we need a wheelchair?” – sure i got ATE..
- but this is all new to me. I have a physio, and have referred myself for Brain Injury Unit but have no idea what that brings with it
i chatted Jimmy last night. I said more or less all of the above, and to be honest he was floored whereas I had been mulling thins for a while.
I said that i wouldn’t be able to manage going for walks with the boys, heading into the city, have any fun with the lads in evenings…. not all day long…for a week. His first answer merely made me see i had being thinking properly. He said “well sure we will see how it goes. if you can’t manage we are only an hour from home…i can leave you home”… that is NOT what I wanted for the week we usually loved….
I realised with help from others in the Ann Conroy Trust…that if i need something physical to help me do what i otherwise couldn’t do, then i NEED IT>
I went online…
How do I borrow a wheelchair or other mobility aids?
You need to contact your local Red Cross office to find equipment near you. To see your office’s contact details, simply type your postcode into our easy search tool.
my details are in and am sure it will have no fluffy dice, no go faster stripes, and God help Jimmy he will have to heave me around the city.
I told the children.
almost a ROW…who would push me first…and RELIEF…and SMILES.
Am NOT BUYING a wheelchair…as hopefully this stage will improve… but when i need help, i am taking help…in whatever form that is!
i use the badge
i use the stick
i carry a fold up chair
at night i will be PUSHED 🙂