Blank Canvass

Who am I?

A mother a wife ,

Someone from another life….

I haven’t got a clue.

Have you?

When I was little I was all alone,

Aged 17 i left home, around the world I roamed.

Having so much fun,

Much more confident I had become.

I went Sailing on the sea,

Young single so happy and carefree.

Feeling in control,

Yet no plans with life I’d just roll.

Maybe that’s life’s mystery,

The way to be ultimately happy.

Not to plan too far ahead ,

To see what happens instead.

Fell in love and started a family,

Lots of adventures we were very happy.

I had painted a picture,

Of how I wanted my future.

Illness and disability ruined that dream,

Or I could say my canvas has been wiped clean?

But who am I, how do I re start ,

I’m not 17 I’m middle aged it’s hard.

I have a blank canvass the choice is mine,

Find myself…. learn to live or just wait to die.

Joanne Quinnell

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 😁

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 😊

The Mask

Who shall i be today

What mask shall i wear ?

Let’s make it bright a cheery

One that matches my hair.

Inside I feel so fustrated and sad,

No one wants to see that as it makes them feel bad.

Grab my lipstick and draw on a smile,

Hope that it’s durable and lasts for awhile.

Use waterproof mascara in case my eyes leak.

I’ll Just dab with a tissue and smile but not speak.

I’ll listen intently and laugh on que,

Try not to frown people notice that too.

I won’t look at anyone or they’ll want to talk,

When it gets too much I’ll sneak out for a walk.

Go off to bed early and go to sleep for the day ,

I’m so proud of myself i survived hip hooray!

JQ

Sometimes we just have bad episodes. During these episodes we need to go into survival mode.

Do what you need to do to get you through it. Also realise that it’s just a moment and this moment will pass.

Can’t say much more than that as I’m having a moment.

Take care of yourselves 💞

Today I feel so tired,

My brain is wrongly wired.

I can’t get out of bed,

Really bad pains in my body and head.

So i close my eyes and drift away,

To all the nice places I’ll visit one day.

Think of the good times don’t dwell on the bad,

Or you’ll spend the rest of your life feeling incredibly sad.

Don’t dream too big to avoid disappointment,

Learn to enjoy the most small precious moment.

A BBQ with friends or a hug from a child,

It doesn’t have to be outrageous funky and wild.

Just have your rest and then carry on,

Hopefully for awhile your pains will be gone.

JQ

Try To Focus on Positive Times

My moods and emotions have been so up and down this year. I get so fustrated at not being able to do what I want to do . This then turns into a downward spiral of feeling like I’m never going to be able to do anything again. Yes if you compare to what I was before I got sick I’m doing hardly anything but you can’t compare , you are at the start of a new journey.

Since January I’ve been going to the gym. Prior to this I’d been on such heavy medication ( 60mg oxycontin twice a day) yet still in pain but mentally dealing with it sat a in chair .

I couldn’t live like this so I asked for an alternative. I got told if i came off oxycontin I could have Nabilone a prescribed cannabinoid. It’s a great drug for me . It helps with my muscle spasms and pain.

This was the start of things changing for me. It’s not been straight forwards . Being more active has caused a few more problems but I’d rather be active with my children than sat in a chair.

This year I’ve been regularly going to the gym. I need support there sometimes just reassurance but my fitness is getting better and the staff are fantastic.

I’ve done 20km on a handcycle as part of a triathlon at Dorney Lake with Team Brit for the Superherotri.

I’ve been on a train journey.

We went to #Bendrigg Trust as a family and had an amazing weekend.

Rode the illuminations.

Went to watch Dirty Dancing and Billyocean.

Would love to watch JonBonJovi

Set yourself goals and work towards them . It doesn’t matter what they are .

Take care

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 ❄⛄🎄

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