appropriate equipment

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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

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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.

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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

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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/

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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

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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.

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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….

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Who’s that Stranger

Who is that person staring at me ?

Her hair’s a mess it’s pink and green.

Her face is flushed , her eyes are weary.

Her arm shakes a lot and she’s incredibly teary.

She has memory problems she forgets to breathe !

And some days it slips her mind, how to write and read.

Im not frightened of her, I’d easy get away,

Her legs are all so shaky they spasm and sway!

I do feel sorry for her as she’s a prisoner in her home.

Really frustrating, when at one time she was active, loved to roam.

When she got ill people said they would help most offers were fruitless,

I suppose as it wasn’t their life they were too busy so didn’t careless.

A burden to everyone is how she felt,

Her husband kept saying it’s just the cards they were dealt.

No matter how hard she tried …….

She was sad every night she’d bury her head and violently cried.

Who is that stranger who’s now looking at me?

There are a few things in common that we have I do see.

No dear God please tell me that’s not who I think it may be!

Our eyes meet, a few things I recognise;

Like the scar just above my left eye.

I got that scar when i was climbing a hill,

My life was full of adventure my passion was finding that next thrill.

Then bang the adventure stopped along with my heart,

My husband and family still keep trying to give it a kick start.

I’m not me I don’t know who I am!

I try to move my foot and get twitches in my hand.

I do Keep on trying hard to find a way to fit back in.

But my arms can’t push this wheelchair, it’s a useless heavy thing.

I try to walk but my legs give way,

Unable to breathe I fall to the floor and in silence I lay.

Trapped inside, my house,my head and this body a prisoner tormented for another day.

Who’s this person laying on the floor?

Errm I can’t remember but I once knew her I don’t anymore.

Joanne Quinnell

Sometimes we lose ourselves when we become ill as it stops us from living our lives the way we are used to living it.

Social isolation is so hard and change is needed to support people to be able to get out of their house and enjoy their life the best way they can.

Mobility equipment needs to be provided so we don’t become prisoners in our homes.