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

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 ❄⛄🎄

My Dream 💭

I have always wanted to take my 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 which was and 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 be anymore 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.

Back to my dream, does anyone think it would be possible to go travelling with children around Europe using mobility scooter/wheelchair.

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?

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