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

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.