Let’s Go to the Moon

What shall I do today?

I’ll take the kids to the park to play.

Or maybe climb a hill ,

Reaching the top looking down is such a thrill.

Maybe I can go shopping,

Buy a new outfit for the weekend to go disco bopping.

Building sandcastles on the beach,

The sun so hot biting into a really juicy peach.

Go for an adventure on my bike,

Round mountains , lakes through dykes.

A bbq under the stars ,

Planning a trip to the moon and then Mars.

Maybe go to a gig to watch a live band,

Dance and laugh all night with a drink in hand.

Wake up !!!

I quickly dry my eyes,

No one to see my cries.

It was all but just a dream,

Nothing is what it seems.

The truth is hard to bare,

I’m stuck in a wheelchair.

Wait !!!

So am I going to just give up?

Is my life going to stop?

All isolated and alone,

My only company my phone.

Things have changed I’m not going to lie,

But every day I am going to try,

Go on adventures ,finding a way,

Knowing that I will definitely get there one day.

Joanne Quinnell

I can feel it in my water…..

Exciting times ahead this year !

1. I’m going to be a grandma (well mar mar joe ) in may.

2. We are fortunate enough to be getting a ground floor extension built. It’s been a nightmare having it built over Christmas but the builders are doing an amazing job.

The ground floor extension will make a difference to my independence and hopefully mean I can do a lot more for myself and my family.

Also we are getting slopes put on both doors so I can get out safely.

I’m really looking forwards to being able to get into my back yard in the summer with the children.

One of the biggest things about the ground floor extension is having a toilet downstairs. My beloved camping toilet can finally retire and the children can finally have friends around for tea or to play without the fear their mum needs to have a wee in the hallway whilst they are here !

The workmen are doing an amazing job despite it being so cold wet and windy at times they have battled on and it is looking fantastic so far .

3. Bendrigg trust is booked for the summer a weekend for the family again and then a week just for me.

It’s a fantastic place that enables people of all abilities to be able to do activities just like everyone else. They have adapted equipment and trained staff to support people to do this.

4. I’m continuing to work out at the gym . It’s more like physiotherapy for me in a way. If I don’t go I stiffen up and get sore. I’m lucky in that if I stay focus and relax my ventilator works for my vocal cord dysfunction whilst I’m exercising.

I want to get as strong as I can on this journey.

5. I recieved a letter from London regarding an appointment for being assessed for a months stay at a neuropsychotherapy hospital for treatment.

6. I’m looking forward to getting out on my handbike more this year with the kids.

7. Going to master using public transportation.

8. Superhero tri again hopefully…..

So many good things to focus on .

2018 some parts were fantastic but some parts were blooming horrible. Lowest , frustrating time in my life.

2019 is going to be amazing I just know it …. I can feel it in my water !!!

Wish you all a good year too ๐Ÿ˜

Joanne

Someone Turned the Light On At Last !

I’ve come to a big realization this weekend. I’ve no idea if it’s due to the fact that I’ve been on anti depressants for years now and my Drs’ practice messed up, didn’t put them in my medication pack so I haven’t had any for 10 days despite trying to ring and sort it out…….

Or it may be the fact that my emotions have been all over the place as it has been really stressful at home with a number of things happening.

This time of year is always hard for so many parents trying to find pennies to make it a special day for their children. To top things off , we’ve been hit with the dreaded winter vomiting bug in this house too! My youngest even had to go into hospital with it as he was really poorly . Oh and we have vomit over most of the bedding that we own and a washing machine thats decided to brake right on cue…. Merry Christmas !

Despite all this madness I still feel a little moment of clarity.

For the last 8 years since I’ve been ill I’ve constantly been beating myself up about all the failings I felt I’ve had as a mum , wife , woman.

I have felt trapped and not in control anymore. I’ve lost all my confidence, I don’t know who I am .

I focused all my energy on getting stronger to benefit and do more in my role as a mum . I think mainly through guilt because we were so active as a family and it was such a shock when it stopped.

It’s not working. I’m not happy there are so many emotional issues around our family (not the place here to go into them) but you can imagine from the lack of support from services like young carers and other community services in the area it has taken it’s toll on everyone.

I had to take a step back. I actually wanted to wash my hands of everything as I’m so tired. Those that do know me ( not many ) but some know that I’m one determined stubborn lady at least , know that I will keep trying to see if I can find a way.

This is what I came up with….

I think I need to get stronger and build my confidence up and feel comfortable and genuinely happy in my own skin. I honestly don’t believe that I can be happy as I am and if I’m honest hoped that as soon as the kids grew to a point where I could disappear I would.

It’s totally wrong to think like this I know , I’m just being honest .

It’s not like i sit at home watching tv thinking this is going to be a rubbish day either. Partly it’s because the stuff I want to do, like doing, requires equipment and money.

There’s some lovely people in a Yorkshire mobility that will help me apply for grants but no idea what suits my needs best as it’s all about that compromise and condition then I feel guilty asking and taking people’s time but I just need to get on with it. The other thing is money. Having children I feel guilty spending on myself for myself , it doesn’t sit right. I have to say in all the 8 years its been the first time a Mobility place has ever offered such assistance which is so gratefully received.

Then there’s the other days where I just don’t feel well physically.

The truth is I deserve to be happy too and if I’m happy that will surely make me a better mum a better wife a better person?

So this is my mission and goal for 2019. Yes obviously still keeping on with building on a functional family but taking some time to build on a functional me. I need to be happy . I need to feel comfortable with me again.

Would love to hear from anyone who feels the same or has suggestions on how to achieve this ๐Ÿ˜Š

My Dream ๐Ÿ’ญ

I have always wanted to take the children travelling. I always thought that as they got older the camping trips would expand further a field to France, Denmark, Holland, Belgium etc.

I wanted them to see the raw beauty of these places as I had when passing through whilst sailing or working there.

With getting sick that dream became buried along with me the person who I am. The mother I wanted to be …..

On the 16th of August I got on a train. Not only that, I drove ‘herbie’ my rascal 301viva wheelchair which has a mind of it’s own and had already thrown me out of him twice !!

I’d never been on a train before whilst being disabled and it was the first time I was going off to do something because I haven’t done anything like this before either. You can’t really prepare for it so I anxiously jumped in at the deep end or that’s how it felt.

My daughter was with me for support and the staff provided amazing assistance at the stations.

I was on my way to an event, it was the Superherotri series on the 18th of August at Dorney Lake Windsor.
The Superhero Tri, powered by npower, invites people with all kinds of disabilities to fly solo, or unite with family and friends to take on unique triathlon challenges.

I was doing the 20km handcycle, I’d joined up with TeamBrit for the day it was an amazing experience.

Team BRIT are a competitive motor racing team consisting of disabled drivers. Many are ex or serving military troops who have sustained serious injuries and are disabled.

They are a competitive racing team who race against teams of able-bodied drivers on a level playing field .

Jamie Falvey was my captain who bravely took on both the swimming and the running part of the triathlon as our runner unfortunately had an injury.

It was great to meat Sally who has been keeping in touch and supporting me and Dave who played a huge part in putting the team together and some other people.

Unfortunately after my event I was so tired and not being used to such things I couldn’t cope with too many stimulants . I wanted to but just ……anyone who suffers from neurological disorders knows what i’m talking about.

So i completed my first adventure! Now I’m thinking im invincible……. What next ?

Can I have that adventure with the support of the kids and me working together? Not hubby’s thing . We are complete opposites !!

Then there’s equipment? How would that work ? Has anyone tried this ?

You see this is meโ€ฆ. !!! Being sick doesnโ€™t change who you are it just causes so much fustration because you canโ€™t be who you want to beanymore and you feel you have lost your identity because you do .

You have to reinvent yourself but Iโ€™m still kinda struggling with that as Iโ€™m planning on shedding the weight Iโ€™ve put on and somehow get back to doing the things Iโ€™ve loved or at least be outside, outdoors having adventures with the people I love.

Or can anybody think of any other adventures that can be done on a cheap budget? For example travelling around the English coast or something?

Back to my dream, does anyone think it would be possible to go travelling with children around Europe using mobility scooter/wheelchair.

I’m interested to hear about anyone who is in similar circumstances and has maybe tried travelling.

I’m also interested from hearing from companies about their products they have to make it easier for families like me to travel.

Travel companies what offers/ facilities can you provide. Often for example to go off road one needs a large mobility scooter yet there are restrictions on sizes . Can you accommodate elsewhere on the train.

That brings me back to the same problem we always have suppliers of all terrain mobility vehicles that you can use on public transport?

I’m excited to hear back from people with their views, advice and experiences…

Thankyou

Joanne

#Samefamilynewadventures


	

You Can Take a Horse To Water ……๐Ÿด

I rode through the illuminations YEAH !! A bit of a disaster at the start though ๐Ÿ˜ฉ. I had all these light up balloons left over from Theos birthday Party and thought it would be a great idea to attatch them to the back of my bike.

So we wanted to go northbound, the traffic had stopped at the lights an ideal opportunity for us to get to the other side to join the cyclists going North. As soon as i set off …POP …. POP ….POP….POP so bloody embarrassing as everyone was watching. Not only that all the strings got tangled around my wheel !!

We didn’t get very far and I had to call hubby to come rescue us . He was on standby with the van ,tools, oxygen etc anyway lol.

We set off again. It was quite scary with so many people around and lights ! I don’t like lights! But I really wanted the children to experience the illuminations. To a child they are magical. Going on a night time adventure is exciting.

There were people speeding past and my heart was in my mouth a few times thinking that someone was going to get hurt but they were in control.

My 12 year old Sam was fantastic at helping keep an eye on his brothers as that was another worry. I only found out about the event yesterday so I didn’t have long to organise myself nor did I have long to worry,sometimes that’s the best way .

It’s a shame not to see many other hand cycles ,trikes or adapted bikes around there was a few but not many. Let’s see if we can change that next year maybe .

I encourage everyone out there who is reading this now to think of a person who may just need a little encouragement. You see it’s not a case of taking the horse to the water and the horse will drink, the horse needs to be taught…. Just as a person who is really poorly may need a drip for nourishment to get stronger. Go to that person who perhaps was once a friend or is a relative and help them to start taking baby steps. Help them to start getting some enjoyment out of life and to see that can still do things but a little differently. Help them not to feel isolated and alone.

This will help with gaining strength and inspire people to maybe be brave and give things a go.

Companies that sell mobility equipment need to be pushing a more outdoor active range at more competitive costs. Businesses need to be accommodating to wheelchair users even actively encouraging them.

With so many talented people out there ,you should be able to create anything that enables people to be able to enjoy the life they used to enjoy for as long as they can physically endure.

All the equipment in the world isn’t going to change the horrible illness that cripples our bodes. Let me tell you it’s not always about us it’s about our loved ones needing a mother ,father sibling to be spending time as a family unit.

I know we all live in a busy world but we should look out for our friends, family and each other.๐Ÿ˜๐Ÿ‘

Just a thought.

Much love and happiness.

J๐Ÿ’“e ๐Ÿ˜

My Dream ๐Ÿ’ญ

I have always wanted to take my children travelling.

I always thought that as they got older the camping trips would expand further a field to France, Denmark, Holland, Belgium etc.

I wanted them to see the raw beauty of these places as I had when passing through whilst sailing or working there.

With getting sick that dream became buried along with me the person who I am. The mother I wanted to be .....

On the 16th of August I got on a train. Not only that, I drove 'herbie' my rascal 301viva wheelchair which has a mind of it's own and had already thrown me out of him twice !!



I'd never been on a train before whilst being disabled and it was the first time I was going off to do something because I haven't done anything like this before either. You can't really prepare for it so I anxiously jumped in at the deep end or that's how it felt.

My daughter was with me for support and the staff provided amazing assistance at the stations.

I was on my way to an event, it was the Superherotri series on the 18th of August at Dorney Lake Windsor.
The Superhero Tri, powered by npower, invites people with all kinds of disabilities to fly solo, or unite with family and friends to take on unique triathlon challenges.

I was doing the 20km handcycle, I'd joined up with TeamBrit for the day which was and amazing experience.

Team BRIT are a competitive motor racing team consisting of disabled drivers. Many are ex or serving military troops who have sustained serious injuries and are disabled.

They are a competitive racing team who race against teams of able-bodied drivers on a level playing field .

Jamie Falvey was my captain who bravely took on both the swimming and the running part of the triathlon as our runner unfortunately had an injury.

It was great to meat Sally who has been keeping in touch and supporting me and Dave who played a huge part in putting the team together and some other people.

Unfortunately after my event I was so tired and not being used to such things I couldn’t cope with too many stimulants . I wanted to but just ……anyone who suffers from neurological disorders knows what i’m talking about.

So i completed my first adventure! Now I’m thinking im invincible……. What next ?

Can I have that adventure with the support of the kids and me working together? Not hubby’s thing . We are complete opposites !!

Then there’s equipment? How would that work ? Has anyone tried this ?

You see this is me…. !!! Being sick doesn’t change who you are it just causes so much fustration because you can’t be who you want to be anymore and you feel you have lost your identity because you do .

You have to reinvent yourself but I’m still kinda struggling with that as I’m planning on shedding the weight I’ve put on and somehow get back to doing the things I’ve loved or at least be outside, outdoors having adventures with the people I love.

Back to my dream, does anyone think it would be possible to go travelling with children around Europe using mobility scooter/wheelchair.

Or can anybody think of any other adventures that can be done on a cheap budget? For example travelling around the English coast or something?

I'm interested to hear about anyone who is in similar circumstances and has maybe tried travelling.

I'm also interested from hearing from companies about their products they have to make it easier for families like me to travel.

Travel companies what offers/ facilities can you provide. Often for example to go off road one needs a large mobility scooter yet there are restrictions on sizes . Can you accommodate elsewhere on the train.

That brings me back to the same problem we always have suppliers of all terrain mobility vehicles that you can use on public transport?

I'm excited to hear back from people with their views, advice and experiences...

Thankyou

Joanne