Today is Thursday 2nd December much as most days I do stuff on my
computer in between looking after my sick hubby. If you want to know about how
we got to where we are now keep re visiting http:/www.onmybiketoo.com where a fully account of our story
will be published shortly.
My day started at
06:00hrs today by carrying out my hubby's urine catheter as it does most days,
when I say it started that sounds like I had a night sleep. We don't sleep in
our household we cat nap in between Hubby's spasms during the night, last night
I was up at, 01:50, 03:00, 03:45, 04:15, 04:45, 05:30. Every time I get up it
is not a matter of 'plumping' a pillow and back to bed no its hard physical
graft for at least 10 mins forcibly straightening his spasming legs,
repositioning his twisted body in bed and then I get to lie down again.
So 0600 came
around again where I have to carefully insert a plastic tube down my hubbys
penis to extract the urine from his bladder. I hasten to add I am not medically
trained but have had to learn stuff over the last three years that I would have
preferred to have left with medical type people.Such is the role of family
carers in our society today.
Around 07:30 I got
him up, again that sounds so easy, but it isn't try putting trousers and socks
on someone's legs that are trying to kick all the time and at the same time not
hurting him. IMPOSSIBLE. Then I sit him up in bed and physically lift 87kg of
man across to his wheelchair. We don't use a hoist because it hurts too much.
In our front room
we tilt his wheelchair back against some cushions so that his blood pressure
does not fall to dangerous levels and sometime this morning he will get a wash
and breakfast as he desires. He will spend most of day trying to sit as still
as possible as any movement sets off his painful spasms. i will have to
readjust his spasming feet on a regular basis and reposition him in his chair
to give relief from sitting in one position for too long.
Today we have a
hospital appointment so I will physically lift him into our car for the journey
to the hospital. I will tell you more about how that went later.
Catch me on
twitter & facebook at onmybiketoo
You graphically highlight the point I've been trying to make for several years that disability can come into your life at any time, either personally, through friends and family or in the workplace.
ReplyDeleteToo many people don't appreciate the issues involved when dealing with disability, and a major education programme is needed to address this.
Your moving story should form part of that education process.
I believe that by working together through the process I've developed on the Accessible Places website, we can promote the businesses who have made an effort to help us deal with our disabilities at the expense of those who don't care, or think all they need to do is put in a ramp.
I feel fortunate in some way that I've come to terms with what I need to do personally to cope with the disabling impact of having Spina Bifida at birth.
However, there are many, like you, who have been affected by a tragedy during their lives, who have a different story to tell to those who go about their day to day activities believing that dealing with disability is someone else's problem. It could become theirs.
Only by getting more people to understand, have we any chance of making a difference. But time is of the essence as our needs are now.