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

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 😊

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.

Touch me ….

Touch me like you used to do,

Hold my hand so hard that my fingers turn blue.

Pull me close and don’t let go,

Happy memories in the past not thoughts of tomorrow.

Kiss my neck and whisper in my ear,

Those three words I’m so longing to hear.

See me as sexy, equal and up for romance,

I’m still that same woman I can just no longer dance.

JQ

Chronic illness and disabilities can affect your relationship with your partner .

It’s so important to communicate with each other and be honest about how you are feeling.

Sexually things might change due to physical changes within your body which may mean that it has an effect on how one once did things. Have fun with it. Try new things . You may find the new ways much better. The key is about being open about your feelings with each other.

The final thing is patience. Remember the reasons why you got together in the first place . Remember the romance . Remember the flirting and the friendship you shared before you became lovers . It’s hard as there are so many emotions too but it’s better to go through it together and you will get through it .

Bendrigg Trust ….

Bendrigg Trust the time is almost here,

I’m filled with so much excitement and fear.

We have a long history a past so sweet,

It will be so different though when i visit next week.

As a young adult I came and volunteered,

I learnt so much, having a disability wasn’t to be feared.

I never imagined I’d be back one day,

Now the shoe’s on the other foot and I need support to live this way.

It’s a family weekend so I’ll have my children with me,

Couldn’t think of a safer,adapted place to be.

To do activities as a family together once more,

Is the day I’ve been impatiently waiting for .

Joanne Quinnell

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