Have you ever thought what the word Independence means to you!?
Or something completely different!?
For me the word Independence is just a word, a word I feel I’m constantly chasing and battling with, It’s a word that in some ways doesn’t apply to me all the time.
As the years have passed me by I feel each year a small part of my Independence leaves me, in one hand it’s a celebration of life but also like you’re waving goodbye to a small part of what makes you, you!
Having a rare type of Muscular Dystrophy a progressive muscle wasting disorder your body can sometimes make the rules up before your ready to, it’s a battle of will’s in some ways ‘body and mind!
when I’m asked how it feels the only way I can explain, is in my head I’m still able to move my legs and arms but trying to put that into action when you feel your body is just laughing back at you saying nope not going to happen today better luck next time!! But next time never comes, It can be hard to let go of something that was once so easy to do.
With the way technology keeps improving year by year, it’s easy to find some amazing gadgets on the market to help Disabled adults and children in keeping their independence for as long as they can.
I try to keep as updated as I can but sometimes you have to rely on all the professionals/Specialists you see to give you a heads up on anything new or the best place to find any latest new or old gadget is from other Disabled people they, after all have first hand knowledge in whats good or not so good when it comes to these gadgets.
The older I get the more I feel like I’m chasing to keep as much Independence as I can. The harsh truth I have to face every day is I know I’m never going to fully have my Independences back. But that’s ok I’ll still live my very best life and fight every step of the way doing it.
I’m not going to lie it’s not cheap being disabled so when you find that one gadget that will help you in your quest for more independents, you can guarantee it’s not going to be cheap.
This Is what I’m faced with right now I’ve found my wonder gadget that will help me keep my arms fighting, and of course the only obstacle I have is the price tag that comes with this wonder gadget.
I have a tendency to get super excited over things I love (kinda like my first trip to Disney Land!) so when I tried out this wonder gadget I went into overload excitement mode I was sharing the video and telling anyone that would listen, I needed this wonder gadget in my life the feeling and idea that I would have more Independence just excited me even more.
In all honesty at first I didn’t think it would be that hard to raise the funds I needed as I’d heard that 2 had been funded this year already, with the help of a team member from Muscular Dystrophy UK the quest of this wonder gadget started.
Applying to charities
Age can sometimes be your friend or sometimes not so much, with me being the age I am 29 ‘plus 10 years experience!’ some charities have to look at whether or not your eligible enough and if the product is worth them handing over vital funds that in ideal can help someone else with something far greater than what my needs would be, do I believe this is right no of course not or fair as my needs are just as important as anyone elses no matter what age, but doesn’t mean I don’t understand id rather them give the funds to someone like my friend FI (blog the life of an ambitious turtle) who needs a new powdered Wheelchair.
But It can still be deflating when you’ve been turned down by 3 out of the 4 Charities you applied to, it can make you think well you’ve lived with out it was just a nice dream to have, I’m just going to have to keep fighting manually like I have been already to keep my arms as Independent as I can for as long as I can, it just probably won’t be for as long as what this gadget can provide.
Over coming the obstacle
When that reality hits you in the face like a big wet smelly fish when your faced with a price range so out of you bank balance It’s easy to think ‘ahh well’ It was nice while it lasted guess it’s going to stay a wonderful dream!
You have to quickly snap yourself out of that “it’s a dream” mode or you just won’t get anywhere, ‘yes I know it’s easy for me to say but remember I’ve been there, you have to find that original fire from inside that kicked started your quest and use it to fight.
You have to learn quite quickly when your Disabled you have to fight for everything in life no matter what it is.
Different ways to raise funds
There are so many ways you can now get help theses day to help you raise vital funds for what you need.
Charities – If you haven’t got a charity like Muscular Dystrophy UK you can turn to for help then Use Google to find or ask other Disabled people what charities they used as I guarantee at some stage they will have had to raise money for something that they need.
Crowdfunding – GoFundMe or JustGiving
Now I’ll be completely honest I found it very hard to open up a JustGiving page to help me, as I’ve never had to ask friends and family for help like this before, but then I generally don’t ask for help that often in my day-to-day life it’s normally just me and hubby muddling through life. I sat on the page for a few days before finding the courage to push that share button.
My quest hasn’t ended it’s just started with help from some amazing People in my life I’ll raise the funds to get my wonder gadget to keep fighting for my Independence!
This is my Go Fund me page – if you would like to help me I’m my quest for more Independence please help by sharing on your Facebook and Twitter or even just a small donation everything helps and I will be eternally grateful.
4 thoughts on “A quest for more independence!”