My mum used to quote the title of this post to me regularly growing
up and at the time I never really understood it.
Ultimately, too much confidence about your own abilities and
something bad will happen showing you that you are not as good as you think.
When it comes to my disability I am always cautious. I look
to find ways that make my life easier, safer and keep me able to do as much as
possible. Either walking or in the wheelchair I take each step with caution; carefully
watching and analysing the environment to know where I can go next.
When I was a teenager my mum told me that being disabled was
not the end and that there was so much more to being me. This wasn’t for an ego
boost but more to show me that I should never give up, that I can do and be
more whilst not being defined by what I can’t do.
This has pretty much been the case since then. My disability
doesn’t define me at all and I would hope my ability and tenacity to do more
would be seen by anyone who knew me. However, all my long term readers of the
blog would know that I have been slowly adapting my life over these last years
to seek support and have more equipment to keep going; ultimately, swallowing
my pride and realising that with the decline of my health I may need a bit of a
boost.
A few years ago I had a terrible experience in London on a
day out which scared me to the point that I realised I needed to use my
wheelchair more. It was, at the time, a shock for me to realise that I had
reached the point of needing to rely on it out in public. Once my pride lessened
I grew to the point of using it regularly when out. It was my safety net, the
thing that kept me active and allowed me to continue being the dad that I
wanted to be.
That was until it was no longer safe.
This blog has been pretty much abandoned for the last few
months. Not for any other reason than my adaption to the new aspect of my life.
Towards the end of January I had a fall whilst being inside
my wheelchair. It was bad and one of the worst falls I have ever had.
It was easily done. Will was pushing me, we approached a low
lying slope and he turned the wheelchair to go up it and one wheel was side
facing, caught the low part of the curb and I catapulted out of the wheelchair.
Luckily, good Samaritans helped me out, the boys supported
me and the hole in my chin was an easy fix by gluing me back together.
I recoiled in the sad thought that it was no longer a safety
blanket and that it could have been far worse.
When I thought about it the real truth started to sink in. I
was having very little sleep because the pain has become really bad at night
time, when I did wake I was struggling to find the strength to roll over to
ease the pain and I was struggling sitting upright on my bed. I was now falling
once or twice a week, I could no longer have a bath or shower whilst the boys
were at their mums in case I slipped and keeping up with the housework became
difficult through fatigue.
The pride I had needed to be swallowed more. I needed to
reach out to different services and get the support to carry on doing all that I
do.
After a couple assessments a few things were set into place.
I now have a Lifeline box put in place for when I fall. This
will support me when I fall and the boys aren’t here so there is always help
coming for me. It would also help if I fall and knock myself out when the boys
are here.
I have a new pressure mattress which has a “toblerone”
shaped top. This should help me sleep better and have less pain.Also, attached
to the side of the bed I have a new rail. This is to give me something to grab
onto to roll over with as a well as to grip when trying to sit up.
They have also given me a bath cushion which is a cousin to
the ELK. Once attached it will help me in and out of the bath, won’t leave the
floor wet (like the shower would) and keep me safer when the boys aren’t around.
Finally, the biggest aspect to swallow, I have funding for a
carer to come in 4 times a week. 3 morning calls and 3 afternoon calls. This is
to help me get dressed in any type of clothing, help me prepare food when
fatigue hits and to help make sure that everything is in place when I am alone.
When Hannah and the kids do finally move in the last aspect
won’t be needed but until then it is great for that extra support.
The reality is that my Muscular dystrophy will always be
declining to some degree and with that some levels of my lifestyle will have to
change. For me to be at my best for myself as well as my family I need to
welcome these changes and strive to continue tackling everything life throws at
me.
The saying is definitely right, my pride went after a fall
and my confidence in my abilities needed that reshuffle to carry on. After some
time using them there has been a clear difference so hopefully they will
continue allowing me to push forward for a lot longer.
4 comments:
Hopefully, the new adaptions help make day to day life a little easier for you! I'm glad you have extra help in place although I know it hasn't been an easy ride, it won't be long until Hannah can take over with that and you can at least eat a decent sandwich ;)
So glad that you’ve got new adaptions in place to help in your day to day life. It is so hard asking/admitting that we need help there’s a few things fhat I’m beginning to struggle with but haven’t gotten round to finding out how to get about asking the right people.
A really insightful blog post. So glad to hear that the new gadgets and gizmos will help you to make daily life a little easier for you. And to hear that you asked for help.
I am still wincing at the chin photo, that must've been so painful! Well done for reaching out for help and I'm glad it was there for you and that you and Hannah have each other and get to live together now :)
Stevie x .... wow this comment was very 'nice' don't be too freaked out ;)
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