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.

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 .

Who am I…

Who am I ?…I don’t know anymore.

I used to laugh so much, now I’m such a bore!

Broken, I can’t see what piece goes where,

I’m trying, doctors can’t even tell so why should I care.

Everyone says I’m still me but I’m not as this isn’t how I’d live my life.

Feeling completely fustrated and useless because I’m stuck inside.

My independence gone my freedom taken away,

That isn’t me, I’m being forced to live this way .

Acceptance NO I don’t want to give in.

I want to be happy again, I want to find a way of livin’…

I want to feel as strong as a lion.

Not as weak and vulnerable as a new born kitten.

It’s hard when you’ve been there and it’s been taken away,

Feeling Kicked out of your herd a leader yesterday an outsider today!

I don’t want to be here like this as it isn’t me ,

I’m shouting help but nobody hears or listens to me.

The injured Lion

Wheely Hard …But We Won!

I got my wheelchair!

I went on Thursday to collect it from Preston mobility hospital.

It has been such an awful stressful journey trying to get a suitable wheelchair to use .

I got sick and when i became unable to walk I purchased a mobility scooter.

I wanted to be more active but also more sociable by being in a wheelchair. So I went to the doctors and asked for an assessment.

It was all rather strange as he filled a form in and I recieved a manual wheelchair that was ridiculously heavy to push and completely unsuitable for the terrain around me.

I contacted the wheelchair centre and explained this to them and they said they had one other wheelchair they could send but if that wasn’t right then my only option would be was to have a voucher that would cover approx ÂĢ350 towards whatever chair wanted but I had to pay the rest.

My options at that point seemed to be to have this second chair and put up with it regardless as anyone who knows the costs of wheelchairs knows that ÂĢ350 wouldn’t go far in paying for a lightweight substantial chair.

The second chair came. An invacare action foldable manual. Yes it definitely was better than the first. It still wasn’t suitable for the area i live in . It still was an awkward thing to push and be pushed. Plus it was too small for me . The seat belt never fit.

During this time I was so desperate for support to get some form of decent transport. My mobility scooter had broken and I was stuck ÃŽn the house getting more depressed as I couldn’t push myself using this new chair.

I finally started getting some social support from the #nhs #enhancedprimarycare team . It was great to start finally getting support. It started off rocky as the first person kept cancelling or not turning up. The second lady was really nice and was going to help me learn how to go on buses ( if i ever got sorted with transport ) . I’d started going to the gym . Had my long term goal of getting as fit as I could for my kids.

I still have this problem of being isolated . I want to be able to take my children out like any other parent. The feeling of being restricted is horrible. Your choices taken away from you. You are always depending on others to do things for you.

My attention turned to grants that might be available. I spoke to turn 2 us and they said there are grants but you need a health professional to apply on your behalf. I forwarded them to my support worker. But I got told from her manager,

It was a waste of time you

applying as people with

no legs can’t even get them

or people with cerebral

palsy. We can but you’ll be

wasting your time!!”

My response was basically if you as a manager and my support worker have that attitude then don’t come to my house again as I don’t need that sort of support.

I think reading between the lines I’ve been quite vocal about the lack of support and resources in this area for young carers and their families. I’ve been asking for help on a personal level and also to try to get a group in this area started as there’s nothing. It’s a very small community here so I’m guessing I’ve offended someone or whatever but children are being let down badly and I don’t want families to go through what we have been through/still are going through but the challenges change.

I was looking on line about wheelchair assessment policies and found this https://www.lancsteachinghospitals.nhs.uk/wheelchair-service

I’d never had an assessment done. I’d never been asked about my needs or my health . No measurements were ever taken.

I’m not asking for a second home , a company car , money back for meals out at tax payers expense . I was asking for a substitute for my legs . To bring a smile to my kids faces so that their mum could go out with them and be a better mum .

I wrote a blog and sure enough I did end up getting an assessment and on Thursday i picked up my wheelchair.

I cried my eyes out when i sat in it and felt the difference between my old one and my new.

It’s so much better. The only negative is folding size . The new one isn’t as compact.

My husband noticed a difference when pushing too. The other he struggled to manoeuvre yet the #primaryenhancedsupport services manager suggested that my children push me around. I responded that I’d get a health a safety assessment done first please!!!(Im a curvaceous momma and my kids are 8 ,10, 12 and 15 well the ones at home to help .The 15 year olds shoulder keeps dislocating but she’s had problems for a long time so I’m hardly gonna ask her).

Anyway my new wheelchair . I’m pretty sure I will get stronger and go further the more I use it. The point is that it’s useable. It’s great . I’m so happy.

Being a rigid frame one i can also get attatchments that will fit onto the wheelchair which will make it multi use for anything.

For example:

Free wheel so that you can go on all terrain ground. A walk in the country, by the river or very useful if you live in an are full of pottholes or pavements that aren’t lowered where they should be. Ideal for camping.

A handcycle attachment that fits to the front of your wheelchair so you can just ride . Good exercise for your heart and lungs and a great way to go out with the children.

Probably my favourite and of course the most expensive. If you are going on a long journey, this effectively turns your wheelchair into a scooter. I’m not sure of the measurements but I reckon you could get on the train with this . It just looks super practical.

Of course all these accessories you have to buy yourself. The things most people take for granted that are free to enjoy come at a cost for us.

If you are lucky enough to afford it fantastic but what if you can’t?

To get me out of the house my friend encouraged me to help out with the local beaver group. I enjoyed it but the problem was I couldn’t go out of the hall or do any of the activities off site as I didn’t have suitable mobility equipment I felt useless sat like a spare part.

I can’t take my children to school or out very far as I don’t have suitable mobility equipment.

My husband supports me but also works weekends and evenings. So we are limited as to what we can do.

So those tears I cried on Thursday were tears of happiness that I finally got a wheelchair that I can work with. That there’s accessories one day I may be lucky enough somehow to get.

There were also tears of fustration that so many people are struggling. So many people have to go through this. They are isolated in their homes.

The government was supposed to be working to improve the situation but there’s not much point in providing any other service if a person hasn’t got the basic equipment to function as any other person.

Referring them to mental health how much does that cost ? Getting someone to come round and say I’ll help you get on a bus when you get sorted with wheels ,how much does that cost? The cost of paying charities to look after young carers but doing nothing really ?

Wouldn’t it be better to put the money into equipment , don’t you think spending time living and as a family would be the best therapy?

I know what I’d prefer …..

If you need a wheelchair insist on an assessment, don’t give up.

Joanne Quinnell

Ps

If anyone can share any tips links stories of their stories it would be fantastic to hear.

If anyone knows of any grants available that could be accessed for wheelchair attatchments I’d really appreciate that .

You Can Take a Horse To Water ……ðŸī

I rode through the illuminations YEAH !! A bit of a disaster at the start though ðŸ˜Đ. I had all these light up balloons left over from Theos birthday Party and thought it would be a great idea to attatch them to the back of my bike.

So we wanted to go northbound, the traffic had stopped at the lights an ideal opportunity for us to get to the other side to join the cyclists going North. As soon as i set off …POP …. POP ….POP….POP so bloody embarrassing as everyone was watching. Not only that all the strings got tangled around my wheel !!

We didn’t get very far and I had to call hubby to come rescue us . He was on standby with the van ,tools, oxygen etc anyway lol.

We set off again. It was quite scary with so many people around and lights ! I don’t like lights! But I really wanted the children to experience the illuminations. To a child they are magical. Going on a night time adventure is exciting.

There were people speeding past and my heart was in my mouth a few times thinking that someone was going to get hurt but they were in control.

My 12 year old Sam was fantastic at helping keep an eye on his brothers as that was another worry. I only found out about the event yesterday so I didn’t have long to organise myself nor did I have long to worry,sometimes that’s the best way .

It’s a shame not to see many other hand cycles ,trikes or adapted bikes around there was a few but not many. Let’s see if we can change that next year maybe .

I encourage everyone out there who is reading this now to think of a person who may just need a little encouragement. You see it’s not a case of taking the horse to the water and the horse will drink, the horse needs to be taught…. Just as a person who is really poorly may need a drip for nourishment to get stronger. Go to that person who perhaps was once a friend or is a relative and help them to start taking baby steps. Help them to start getting some enjoyment out of life and to see that can still do things but a little differently. Help them not to feel isolated and alone.

This will help with gaining strength and inspire people to maybe be brave and give things a go.

Companies that sell mobility equipment need to be pushing a more outdoor active range at more competitive costs. Businesses need to be accommodating to wheelchair users even actively encouraging them.

With so many talented people out there ,you should be able to create anything that enables people to be able to enjoy the life they used to enjoy for as long as they can physically endure.

All the equipment in the world isn’t going to change the horrible illness that cripples our bodes. Let me tell you it’s not always about us it’s about our loved ones needing a mother ,father sibling to be spending time as a family unit.

I know we all live in a busy world but we should look out for our friends, family and each other.😁👍

Just a thought.

Much love and happiness.

J💓e 😁