Tuesday, 24 April 2018

Pride goes before a Fall

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.


Relentlessly Purple said...

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 ;)

Nicola, J Ogston said...

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.

Martina said...

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.

A Cornish Mum Blog said...

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 ;)