What a crazy few weeks. I’m now officially the mother of an 18 year old!

It was ridiculously hard trying to arrange a party for her. Not just the arranging but the time actually on all the little bits that you think don’t take long but take ages. Then put into the mix fingers that twitch just at the crucial moments. A brain that can’t process more than one thing at a time anymore then often goes off on a tangent. My shoulder injury and having not so helpful little helpers helping, which is nice as an activity but when you need to get stuff done it was a little stressful.

You knew about my first accident which was my electric wheelchair having a disagreement with a pothole and in the process I got thrown out 😠 well……

I organised for the first meet up for our group #SameFamilyNewAdventures which is for young carers and their families to meet

https://www.facebook.com/groups/1556840474401957/

We went bowling at the YMCA Thornton and it was really good fun. The mums (Nicola and I) formulated a plan of action on how to try and develop the group .

We welcome all support from anyone who wants to get involved.

On the way home I had to pick up some more shopping. I had 4 of my children with me and shopping always starts squabbles but I had no choice.

Still squabbling on the way home so I’m trying to be referree avoid the ridiculous amounts of dog poop that are on the pavements ,hold a 12 pack of toilet roll whilst controlling my wheelchair that doesn’t respond well to all the potholes ,slopes etc

Next thing I remember my daughter’s voice screaming get dad! At least I’d fastened my seatbelt this time and the wheelchair came with me. Oh and I was so glad I had trousers on as my feet were in the air. Especially as I was there for awhile whilst the ambulance came.

I have damaged my shoulder again and my elbow. I phoned up about getting funding for a more appropriate chair but the only one i can get on the nhs is a basic manual wheelchair I can’t push on bad terrain or without my ventilator because of my breathing. I got told a family member could push me . I mainly go out with my 14 year old daughter 12, 9 and 7 year old sons and I’m a curvy cuddly girl 😁👍I’m pretty sure that if they were to do an health and safety assessment it wouldn’t be appropriate especially on our roads .

It’s about providing appropriate equipment so people can live as best they can under the circumstances. Equipment to us isn’t a fashion accessories it’s essential so even if it’s for an hour we can do what our loved ones are doing .

There’s a big drive about getting equipment for sport but surely when you are disabled you need appropriate equipment just to be active normally so shouldn’t we focus on that.

It’s like one shoe fits all sort of thing.

Just when i think i find support from an area, someone talks down to you .When I asked about funding (which I thought had been applied for ages ago) I got told we can’t even get funding for people with no legs at all or people that are on oxygen all day but we’ll still apply if you want. Can you imagine how that made me feel? That was from a colleague of my support worker.

So how am I supposed to win with that? To apply for funding you need a health care professional it’s no win situation isn’t it.

All I want to do is enjoy my life my family, get stronger try and cope better on my bad days. Help others. I don’t want to sit in a chair doing nothing it’s torture. You may as well make euthanasia legal because it’s not fair to let people suffer.

On a positive note the gas and air was bloody amazing!!!!! Can you order that online🤣🤣🤣

Much love to everyone.

Joanne Quinnell

It’s the 25th of April Update

Hi so it seems that it’s okay for healthcare professionals to constantly throw the they are more worthy of this than you card. Isn’t that discrimination?

So it may be that someone has no legs or is on oxygen all day oh yes and the new one today was cerebral palsy but what has that got to do with applying for funding on my behalf. Why should I be made to feel bad or any less deserving than anyone else.

I don’t live in a council house or on housing benefits. Not that there’s anything wrong if you need that support. Yes we have some to top up what my husband doesn’t make because he doesn’t earn as much with not being able to put as many hours in.

We are doing our best to keep going and for the 7 years of me being ill it has been awful . I’m thankful that my medication is stablish but I didn’t expect that health professionals should be able to speak to people that way.

The Definition of disability under the Equality Act 2010. You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.

So does it matter what my disability is? If my condition stops me from walking (it does ) then I need a wheelchair. I’ve had to use a camping toilet downstairs for the last 7 years ffs!!!.

All I asked for was for some forms to be filled in from turn2us the charity where you can get private funding . It just needs a health care professional something similar. I sent them in on the 2.2.18 having already thought they’d been looking at funding . I’m now told I have to get the consultants to do it that it’s not their job . I thought it was their job to support me.

I’m not actually sure what they have done for me practically. I thought they were supposed to be helping me get out and about and start living .

I’d set myself some challenges this year and already I feel like I’m losing. I haven’t got ££££ to spend on a new chair but I’ll not be kept quiet and the problems with social care and especially young carers in our area will be heard.

Until then I would like everyone to message ironman and ask him if i can borrow his suit… Robert Downey Jr can drop it off himself

……what he’s not real …..ok the suits fine then on it’s own 🤣🤣

Be strong people …. you are worth it 😊