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

My Dream 💭

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 me…. !!! Being sick doesn’t change who you are it just causes so much fustration because you can’t be who you want to beanymore 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.

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


Superhero Tri Dorney Lake Windsor 18th of August 2018

At the Superherotri,

You dont really need to fly!

Just put on a mask and cape,

Have fun at Dorney Lake.

There are a few events ,

1st, 5th or last place, don’t matter, just reach the end.

I’m with TeamBrit,

Racing car drivers dropping tools and coming from the pit.

I can’t wait to attend,

On 18th of August next weekend.

Team Brit are raising money,

For kartforce who help ex military.

Lots of charities being supported that day,

Young and old superheroes swimming, running and cycling in their own powerful way!!

Joanne Quinnell

Please support this worthy cause at Lake Dorney Windsor on August 18th .

If you would like to sponsor me from TeamBrit

https://www.justgiving.com/fundraising/joanne-quinnell

To find any of the other teams just follow this link to superhero tri and flick through

http://superheroseries.co.uk/2018-superhero-tri/

Help the Superhero Complete Her Challenge ………

On the 18th of August I’m doing the http://superheroseries.co.uk/2018-superhero-tri/ at Lake Dorney Windsor . I’m not sure how I got involved in it but it came about at a time in my life that has probably helped me so much.

I know that some of you know my story but a very quick recap for those who don’t.

I’m a 43 year old mum of 6. Nearly 8 years ago now I got very sick. Neurological, muscle spasms, vertigo,cluster headaches, vocal chord dysfunction etc etc ……..all at once . I couldn’t walk in the end I am so unsteady , my back spasms and I get very breathless.

I was put on very strong pain killers oxycontin 60mg in the morning and at night except they didn’t kill the pain, they just killed my mind. So I couldn’t move and I was like a zombie.

It was like this for about 4/5 years and I said that enough was enough after going round in circles trying to chase a diagnosis so that I could be put on the right “medication” to “help” me, I wasn’t waiting a minute longer.

During those years my husband had to do everything and try and work too. My children missed out on a childhood and the social care in my area is poor so we were isolated .

We had no support from schools . Charities lets not go there ( that’s a whole other blog about children’s services business’s / charities) . My kids lost out ,I’ll feel guilty about that for the rest of my life.

So i had a complete medication change and finally was diagnosed with vocal cord dysfunction which had been causing the breathlessness and choking episodes etc. The solution is to wear my ventilator when im exercising which helps keep my breathing in rhythm and throat open.

So since the beginning of the year I have been trying to go to the gym everyday ,with 2 ultimate goals in mind . To be able to ride a handcycle with the children and to use a manual wheelchair.

I used to be really active before I got sick. I loved going to the gym. I would put the kids in the creche for an hour and go to a spinning class 3 times a week then a Pilates on a Friday. At weekends we’d go walking and I loved camping. We were an outdoors family.

That first time going into the gym was the hardest. https://downbutnotout.blog/2018/05/27/going-back-to-the-gym/ But I had lots of support and I was determined. I am determined. Even when I’ve done the http://superheroseries.co.uk/2018-superhero-tri/ my journey isn’t over, it’s at the very start. I still have to keep building my strength up . I still need to keep losing the inches. I’m trying to get a support group for families and young carers in our area organised https://www.facebook.com/groups/1556840474401957/

The main thing is focusing on being a family again. It’s difficult to know what positions we are in the family. I often feel fairly useless .

It may not seem like a lot to some people but I’m as chuffed as anything to be doing it . Even if it takes me all night I’ll complete the 20km it’s more than the distance. It’s about mending a broken dream same as for the charity I’m raising money for

http://www.kartforce.org/about-us/

I’m honoured to be racing with TeamBrit http://www.teambrit.co.uk/

Jamie Falvey https://m.facebook.com/JamieFalveyRacing/?locale2=en_GB is my captain.

Really looking forwards to seeing all the other superheroes there and as long as we all have fun then everyone will be a winner 😁👍🏆

If you do want to sponsor me please being follow the link below https://www.justgiving.com/fundraising/joanne-quinnell

Thankyou so much

Joanne

Is it a Bird ,is it a Plane ?????

No it’s going to be me flying down Fleetwood Beach in one of these beauties👇👇👇

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.😬

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 🎼We all like to be besides the seaside ,we all like to be besides the sea🎶 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. 🤪

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

Supercalifragilisticexpialidocious !

As a child I spent ages learning that word and singing that song. Mary Poppins was the best nanny ever ! Then of course she went on to have adventures on flying beds ,what a woman.

I had a meeting the other day with the care provider who have the contract to look after young carers in my area (Lancashire). It was established that their contract is being met. They do run their service differently from a neighboring one and it isn’t fair to compare. I thought personally that being a charity they were raising money to do more beyond what they got paid in their contract for but…..

Right so let’s move on . I’ve been racking my brains around and they do take a lot of shaking and organizing. I started thinking about when my children were little and there were lots of things at health clinics, centres….

The main person that kept everything in check was your health visitor. Now my health visitor Lavinia was amazing. She was so supportive and efficient at her job. If you had a question she had an answer a leaflet or she’d get you one. The health visitor was central to my health and my child’s health and any other children in the family. She could make referrals, appointments, find support etc

This all seems to stop when your child grows up and goes to school. Normally this is fine as let’s face it you just want to get on and do things your way . No more 9 month check worries . You get settled into a routine and everything is hunky dory.

So when a spanner is thrown in the works, who is supposed to step in and help a family ? Who’s supposed to coordinate care ? Who is supposed to check the emotional and physical wellbeing of the children?

Obviously a parents first port of call when struck down with an illness is the doctor’s. Now you can’t get people involved straight away but there should be some kind of red flagging on the system that allows them to get some social support for a family surely?…

What about school? Should they have a red flag system because mum has stopped bringing the children to school, dad is now and when asked the children say mum is ill?

I think that instead of paying all these different charities and organizations, money would be better spent on family support centers in different areas which cover all the areas in one base. A bit like sure start but for older children . I know you have the wellbeing. I’m not sure if this is what that is about but if it is , it isn’t known about by doctors or anyone else.

Money is being used on services that help a handful from the area . Other money in primary care is being wasted on services which are pointless.

I’m ashamed to say that because of my illness my 2 younger kids have never had any of their friends around for tea as it just too much and I have a camping toilet downstairs . My 9 year old has never been invited to a school friend’s to play or for tea and my 7 year old has just once. Neither have ever had a birthday party because at my worst logistically it wasn’t possible but that is going to be rectified this year hopefully! As dad works mainly weekends if one of my older children aren’t around or I’m not great we are stuck in. This is not a normal childhood . I feel guilty as hell about it and it’s what keeps me motivated to try and get as physically strong as I can become.

What I’m trying to say in my round about long winded usual way is , young carers there is help if you fill out the assessment and say I need help I am a young carer I do everything I have no other life…….. so if you are having that assessment and feel that way, please say it. If you’re not so forth coming or you are too young to express yourself in that way then you will drift, but your childhood certainly won’t be that of a normal one.

I went to see my 12 year old in a performance at school. My chest was bad so I had my ventilator on but still kept frequently coughing. I’d taken my 9 year old as a treat (stay up late) . Every noise I made he looked at me with concern and needed a thumbs up that I was ok ,now that’s a young carer !!! I felt sad that my 9 year old was looking out for me but also proud of how sweet natured he is. He should be able to relax though.

I strongly believe that the key to helping young carers is to work with the whole family. It’s a process that needs to be gone through and someone needs to be central as it’s just chaos and counterproductive at the moment.

Until then I will do my best for this area to keep trying to set up monthly meets in different places for families.

If you are a local business who would be willing to offer your premises and services once a month every month then please get in touch.

Joanne Quinnell

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

The Storm

There’s a Storm is on it’s way

Quick pull down the sails and stow things away.

It came unexpected so we weren’t prepared.

Main sail sheets got tangled and the actual sail teared.

Below deck the boat was badly listing ,

We’d radioed for help but no one was listening!

Bruised and battered huddled together we lay,

This storm showed no signs of going away.

Move on storm leave us be,

We can’t take anymore my family and me.

I stumbled on deck to check all the rigging ,

Parts of our boat were breaking off and going missing.

We need to do something we are going to die,

Please someone help us I screamed up to the sky.

I try to be calm so the kids don’t panic too,

But my shaken demeanour so easy to see through.

“What’s up mum ,what’s going on? ”

I played down my fears I had on deck whilst i was gone.

The boat is damaged and nobody hear our cries,

The Storm continues on and on in my head i say my goodbyes.

Lost at sea nobody around to hear our calls,

This boat slowly sinking I tried to keep it afloat but couldn’t so I’ll send my love to you all …..

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.

Just an idea….

Ideas to throw out there to help with social isolation due to disabilities or long term health conditions ……

  • Heath centres that have gyms connected to them so that people can exercise but be reassured that they are in a place of assistance should it be needed.
  • Physiotherapist to work alongside personal trainers in the gym. The gym is a better atmosphere. Physiotherapists need to take a back seat and just check in and be there for injuries but actually treat them forget the no hands on approach.
  • Provide more appropriate wheelchairs for users. You wouldn’t wear sandals in the snow (unless you are Cody Lundin)
  • Perhaps it would be cheaper to manufacture the wheelchairs yourself instead of buying them at ridiculous pumped up prices from companies making ridiculous amounts of money from disabled people who need these chairs.
  • This would save the nhs much needed money in two ways. First it wouldn’t be funding the chairs that it does for people and people might actually be able to get out and exercise and get healthier reducing hospital admissions.

It sounds too easy doesn’t it….

Lost in the Shopping Centre ….

I’m starting to sweat now. My frustration levels have increased. Not sure which way to go….

If i go that way potentially my situation could get worse the other might be more challenging physically but I might get there in the end or not.

The noise ….I can’t hear myself think whilst I’m trying to process all my thoughts, there are just too many and it’s making it difficult to think what to do at all.

My head is hurting because I’ve been trying to find the way. I have to keep stopping for oxygen . I get fustrated. I have to process thoughts and I just can’t do that very well anymore.

Right keep moving. Let’s find a way. Need to go up but the lift doesn’t work . How did I get down here? Seems so long ago now.

There’s people everywhere but nobody will help. I try to ask but my voice isn’t heard .

Why did I come here. Thought I would be brave and give it a go. I haven’t left the house in years ….why did I bother.

This wheelchair doesn’t work properly. Everything is in my way. My heart is beating hard and I’m struggling to breathe.

I’m panicking I don’t know what to do!!!!

I don’t know where to go!!!!

I wish I’d stayed at home in the the quiet…

I tried it ….I asked for help ….nobody heard ………..

I’m not going out again I can’t. It’s too much . Too much all to deal with. I want to but it’s not safe for me anymore .

I’ll stay at home…..

Joanne Quinnell

#socialisolation #communitysupport #disabilityawareness #youngcarerawareness