People keep saying you are in control of your own destiny but that statement it complete bullshit!
I was came home feeling fantastic after doing the Superhero Tri series with TeamBrit on the 18th of August. I’d worked so hard and achieved so much yet I realise that I’m always going to be dependent on a shoddy system no matter how much hard work I put in.
All I want is bloomin transport to get around with my family. Why is it so hard. Why is the whole process so tiring broken and hard? Why did I have to ask ? The fact I wasn’t assessed at all and sent a completely wrong chair. Yes they did eventually do an assessment and a new chair ordered and a new chair is sat there waiting for an appointment which hasn’t been scheduled and could take 10 weeks!!
On top of that I’m still trying to find something more appropriate for off road as I live in a village and much like the rest of Britain the roads are in poor condition anyway so I need a proper good heavy duty electric wheelchair or scooters but have you seen the price.
I want control back and I can’t get control of my own life can you imagine how that feels . I feel trapped. I can’t do what I want when i want . I always have to ask like a child yet I’m supposed to be the parent here.
What is one supposed to do ? I feel helpless. I feel like a rubbish parent and it always comes back to not having the equipment to replace the parts my body can’t do and not having the equipment due to either a shoddy system or having no money .
I am very grateful to the wellbeing for supporting my kids and Banardos for taking the little ones out over the summer for the day but what i really want is family time. I’d like to be able to be able to build the confidence to take the kids on public transport and have the correct wheelchair to do it with!!
I’d like my house to be more disabled friendly so I can do more in the kitchen for my family.
It’s just hard when you try so hard but you get knock backs all the time …. I’m feeling defeated today.
Maybe I should go back to bed !
Didn’t go back to bed went to the gym . Didn’t feel like it but pushed myself as I need to keep my muscles moving.
I also had a meeting with my personal trainer John today who was going to teach me a little circuit to do with some free weights and ropes etc .
I’d never been in that corner of the gym before it felt a bit 50 shades of grey(ish) not that a sweet innocent girl like me has watched anything like that 😏🤫
Anyway I quite enjoyed waving the ropes around and lifting balls with handprints called ‘wilson’ on , like the one from the film Castaway with Tom Hanks.
I came away feeling better. At least my muscles will keep getting stronger. I have my bike to go on with the kids.
I am upset about the wheelchair situation not just for myself.
It just beggars belief that a disabled person doesn’t get the support to travel. To do the things a parent does with their children like taking them to school etc.
If you were running a business it would fail so can you imagine how it feels inside the constant fight to get the tools to function as a person properly. So this is why people are isolated ,unmotivated and bloody fed up when they get sick. Unless you are in the right area or you have money you are abandoned and it needs to change.