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

Take a chance and climb ….

Keep your eyes forwards you are almost there,

Don’t look back you’ll give yourself a scare.

Moving forwards is as hard as going back ,

But the future is unknown the last few years have been crap.

One hand at a time just pull yourself higher,

Til’ your whole body’s in pain and your lungs are on fire.

You’ll get there and see the world from a different view,

All of a sudden you won’t feel so blue.

JQ

Don’t Compare….

It’s really difficult when you have a chronic illness, condition or accident that causes disabilities.

I’ve made no secret about the fact I’m unhappy and fustrated with the body I’m in but I guess that’s natural to feel aggrieved when you can’t do what you used to be able to do etc.

Although it’s really difficult try not to compare lives . That was then this is now.

Everytime you look back and compare to your old life before you got sick then you will feel disappointed.

You have got what you have look forwards and look for new adventures and new things to try. Perhaps look for new clubs to join. Go to the gym do just a little and build it up. Buy a handbike . Adapt things.

If there’s one thing I’ve leant is that you’ve got to be pro active in finding things and adapting things for your family and you as there aren’t very many functional support services out there.

Take care of yourself and each other.

Bah Humbug…

Christmas is a time of cheer,

Not for me I often hear.

Lot’s to do and people to see,

A thousand decorations to put on the tree.

The internet shopping til 3am,

Fall asleep, wake up… do the same again.

Searching for that present you just can’t find,

Naughty Santa for leaving it behind!

All that fussing for just one day,

Then you have to tidy up and throw all the rubbish away.

JQ

Coping at Christmas with a chronic illness or disability.

Christmas can be such a stressful time of year . Try and make it easier by writing lists,buying decent scissors to getting a decent tape dispenser for wrapping presents ,all these things make a big difference.

If you can wrap bit by bit then it’s not a massive chore last minute when you are exhausted.

If you have children dont forget to allow to pace for extra school Christmas activities too.

Ultimately remember it’s your Christmas and you can start your own family traditions for your special day. Get the kids involved. It may even provide some activities for you to do together on a wet afternoon leading up to the big day.

Try and enjoy โ„โ›„๐ŸŽ„

Bendrigg Trust ….

Bendrigg Trust the time is almost here,

I’m filled with so much excitement and fear.

We have a long history a past so sweet,

It will be so different though when i visit next week.

As a young adult I came and volunteered,

I learnt so much, having a disability wasn’t to be feared.

I never imagined I’d be back one day,

Now the shoe’s on the other foot and I need support to live this way.

It’s a family weekend so I’ll have my children with me,

Couldn’t think of a safer,adapted place to be.

To do activities as a family together once more,

Is the day I’ve been impatiently waiting for .

Joanne Quinnell

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Is it a Bird ,is it a Plane ?????

No it’s going to be me flying down Fleetwood Beach in one of these beauties๐Ÿ‘‡๐Ÿ‘‡๐Ÿ‘‡

Can you imagine how much fun I could have in this? I might attach a kite to it so I can really go fast (just kidding) but it would be nice to sit on the beach and fly a kite with the kids.

I can help to build sandcastles and then kick them down at the end .

Oh I’d have the bonus of the best sunbathing chair whilst we have a snooze after eating sandy salty gritty sandwiches.๐Ÿ˜ฌ

The best bit is that I can take my socks and shoes off and dip my feet in the sea panicking that everything touching my toes is a crab or jellyfish.

All I can do at the moment is sit at the top and watch the children play and hear their faint laughter in the wind. At least they are having fun but I’m not part of it and it upsets me.

These Beach wheelchairs can be a reality for Fleetwood . They can be there for disabled and less abled people of all ages to enjoy . We just need to work together as community to get the service up and running and then maintain it.

I think you might agree it would be worth the effort though as ๐ŸŽผWe all like to be besides the seaside ,we all like to be besides the sea๐ŸŽถ Ok too cheesy I know but it’s true and I bet you are singing that song in your head now ,just like me when writing this. ๐Ÿคช

If you you can offer a couple of hours of your time to support this service to get up and running that would be amazing. Please contact

fleetwoodbeachwheelchairs@gmail.com https://fleetwoodbeachwheelchairs.godaddysites.com/

We can do this as a team as neighbours as a community. Please share to raise awareness so everyone gets to hear this super exciting news.

I can’t wait . I know I’m the mummy but the first thing im going to do is put my feet in the sea whilst the waves are coming in, the kids can jump them I’ll happily let the sea water spash and soak my feet and listen and see the smiles and laughter on my family’s faces .

Joanne Quinnell

Action Needed – not your best dance moves ,this is SERIOUS!

This is a few of the activities that the amazing Blackpool Carers centre have put on for their Young Carers over the last few weeks .

Blackpool is approx 10-15 min drive away from us.

In Fleetwood,Wyre and Fylde we have separate funding and seperate people who won the contract to support our Young Carers . This is some of the activities that the Young Carers have done in the last FEW YEARS…….

Hardly seems fair does it ?

If they aren’t going to do it help us to do it . Support #samefamilynewadventures https://www.facebook.com/groups/1556840474401957/

Joanne Quinnell

It’s Everyone’s Right to Enjoy Family Life….Please Let Us Have Ours!!

Wouldn’t it be so nice to be able to see disabled and people with chronic health conditions join in fun physical activities with their families?

I recently experienced this again after not being able to for so long due to bad health, no support or the equipment needed to use . Thankfully I found a few people to help me, motivate , without them it would have been impossible.

Even though it’s been years and taken a long time for me to get to the stage where I am strong enough to go on a handcycle down the promenade with my children , I still count myself lucky and privileged.

To feel the air on my face. To feel free . To feel in control. All of you adventurers/explorers/adrenaline junkies know that feeling.

To hear my children scream and laugh with excitement . To be moving something with the power of my own body ( this was so important to me ). I had to compromise and have a ventilator on so I could breath but I’ll live with that if i can join in with fun activities with my children as it’s about adapting to things just having a go. I want to share experiences with them like all other mothers do . See their excitement calm their fears ….

It does feel a little bitter sweet because I know that there are so many families out there craving the same. I hurt for them, I know how it feels to be a parent who can’t do things with your children. The guilt you feel, the feelings that you are failing them are actually unbearable at times.

To do things as a family with adapted equipment with support if needed is what our families should have .

More equipment so wheelchair users can get on the beach.

Adapted bikes so families can go cycling together.

Better lightweight all terrain wheelchairs on the NHS so users can push them manually .

Rollaters (treadmills for wheelchairs) in the gym so people Can exercise.

Wheelchair/seated dance classes.

More wheelchair sports in all areas .

All these things will help people build up physical strength and much needed confidence so that new skills can be learnt.

This in turn can only have a good impact on everyones physical health , mental health and family wellbeing .

The cost of getting equipment that is classed as for use by a disabled person, is automatically inflated . The reason for this being some local councils etc will buy or pay for the equipment and also people use all their mobility benefits and the industry milk ever penny they can get but really the profit margins that they make are extortionate and should be capped !!!!

These items aren’t fashion accessories. The wheelchairs that you get given from the nhs aren’t fit for purpose for everyone .You are supposed to have an assessment done to get one suited to your needs but that doesn’t usually happen. So these big bulky wheelchairs are a waste of money because you can’t move in them anyway.

Even though it may seem like it may cost more to support a project like this , I really believe that long term it would work out cheaper. If you think to about the impact social isolation has on the whole family. So supporting that one person to get active is the way forward.

The Health Secretary is always claiming to want to solve the problems within the NHS and social isolation within communities. This could do both . It would be an investment not just in the person who needs adapted equipment but the rest of their family too.

For example my husband works and he works mainly weekends unfortunately that means my children are often stuck at home with me. Sometimes I am too ill or didn’t have any mobility equipment suitable to use to go out. This means that my children don’t get to exercise, enjoy fresh air or socially engage with other children, our family is not unique.

Going out on a handcycle was the best thing ever! It felt like i got a little bit of something back …… maybe my rights as a mum …… self worth …… hope …… happiness …….. independence …….. my adventurous spirit.

Please help me to come up with ideas to change the way we look at support less abled and people with long term health conditions and their families.

In my area Young Carers especially have no support. The emotional impact of a family member being ill can cause so much turmoil in a young person’s life. From a personal perspective I’ve begged charities for help for my family, as I can see how us going from being super active as a family to literally doing nothing is effecting them. I got no support and again I’ve approached charities for help in starting a group for young carers in Fleetwood Wyre and Fylde for young carers but no help even though they work just down the road in Blackpool.

It’s like a postcode lottery almost as to which areas are provided with money and support . Yet there are policies in place saying that certain services should be provided for all young carers and their families.

There are some adapted bikes at the YMCA in Fleetwood that are only used once a week . I thought it might be great to perhaps expand that and start a family cycling club . I’ve been trying to get hold of the right people . If anyone can help I would really appreciate this.

Also really think that families doing activities together is the best therapy, be it crafts ,ping pong ,board games, cooking, skiing etc so if you are a #charity #organisation that could offer some time and if needed equipment please get in touch .

If anyone has any contacts from this area. Ideas . Thoughts ……….

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

Joanne Quinnell.