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

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 💞

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 ❄⛄🎄

A Letter To Mr Jeremy Hunt MP.

Firstly i have to say that i’m a little upset that you haven’t taken me up on my offer regarding me relaying my experiences with the care I’ve recieved through the NHS and how i feel it could be run more efficiently and effectively so that everyone benefits but primarily the users of the service receive the quality of care they deserve, have been promised and lets face it should be given .

I first became ill approximately seven years ago . Im not going to go into the finer details (happy to in private) but lets just say several things happened to my body at once.

I went to my GPs problem one you never get to see the same Doctor so you can’t built up a relationship with them. They don’t know your history and let’s face it it really is pot luck if you get a good one or not. Within approximately 3 weeks after ruling out anything super major i was put on pain killers and told i had fibromyalgia.

I’d gone from being super active exercising four times a week, active with my children to barely able to do anything.

That was the start of my demise (is that the right word) as everytime i went back to the Doctor’s i saw a different one (that is if you could get an appointment) i just got more medication.

In agony with muscle spasms my husband took me to hospital and they started me on oxycontin. That was another big mistake.

I mean there was literally no help. I didn’t want to live. I couldn’t move . I was in agony. I wanted to die.

Little bits started happening in the background my Dentist referred me to maxillofacial. He became pro active in trying to help with the facial spasms and we seem to be on top of them mostly with regular botox injections because they can offer them at blackpool Vic hospital.

It was then discovered that i was stopping breathing at night but it was central apnea so had to be referred to a specialist lung function unit at wythenshawe who have been amazing and we still aren’t understanding what the heck is going on but they are fantastic there.

I was also referred to a pain clinic in Preston. He’s great and he worked with me in getting off these oxycontin because they weren’t doing anything. They were completely wrong for the symptoms i was having . I was given cannabinoid to try and that has helped. He also gave me steroid injections in my head neck, I’d have rather had botox as i know that works for me but preston hospital don’t do botox. Bear in mind i already have steroid injections further up in my head that the neurologist does to treat my migraine cluster type pain so I’ve no idea if I’m being overdosed on steroids 😤

So i have all these amazing specialist now treating me and after 6 years of hell I’m starting to feel a bit more like i want to live again.

The problem with having specialist all over in different regions is that they are on different computer systems. Tests can be repeated results aren’t shared so diagnosis delayed therefore treatment is and that’s unacceptable! Surely my files should be in one place?

Then if you are going to try and use the argument that GPs are supposed to correlate the information and make sense of it are you kidding me? I am trying to stick with one GP at my surgery and the poor man is run off his feet. I can’t get an appointment but isn’t it my right to have someone watching over everything that knows me and knows my history?

My next point is social care. Not a lot to say really as there isn’t any in my area and as you are making it one of your targets i hope you will support me to set up something in this area. Young carer deserve a place where they can go. It’s not only that my youngest child has been terribly unhappy about going into school or beaver scouts because he has attachment issues with being stuck in the house a lot . I have been asking for support for him as he would benefit from group activities to build up his confidence and social skills.

The next thing ( i bet you are wondering when I’m going to stop , nearly there)equipment. I was stuck in . Couldn’t leave the house. Contrary to belief you don’t grow wings when you drink red bull !🤣 It’s like stupid to say it but you need someone to teach you to be disabled.

You don’t have a clue what to do. I’ve had to use a camping toilet in my hallway for 7 years . It’s been the best buy ever that toilet and we have definitely had our money’s worth out of it.

So i bought my own second hand scooters but as they died i asked the doctor if he could get one because mortgage to pay and all that. I was expecting an appointment to go to the wheelchair place to discuss my needs. It’s not it’s one style for all! It may as well of been an extra seat because it was useless as a wheelchair in this area. I told them and they did kindly replace it with a more action one but this area is horrendous for pot holes and kerbs that are supposed to be lowered but aren’t. How am i supposed to enjoy going out with my family? I do have an electric wheelchair i bought myself second hand even that isn’t good enough for this area . I can’t be independent. I can’t do what i want to do . I’m fustrated. Do you know how it feels to really really want to do something but you can’t because your chair won’t go that way. Mum’s let us down again .

On a positive note we have just got enhanced community support workers in this area and it’s the first social care I’ve had which has been priceless.

I’ve worked out a way to exercise with my ventilator on so I’m trying to strengthen my arms up .

The occupational therapists came around and hopefully I’m going to get ground floor bedroom and toilet hallelujah. The kids can have friends around.

It may be jumbled, there may be typos, punctuation, grammar (my brain all jumpy even with screen letters on huge I’m struggling) etc anyone feel free to edit and send back. But it is from the heart and it’s real so i hope you read this letter and take it on board. I was a strong person and this has broken me . More importantly it’s stolen my childrens’ childhoods because I’ve failed them. Times ticking they’ve lost mostly 7 years……………

Update 12.4.18

Well Mr Hunt I Just wanted to update you about the wheelchair situation. I have since had 2 accidents