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 💞

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 ❄⛄🎄

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

Home

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

Fight or flight ?…ðŸĨŠ

Blood,pain, sweat and tears,

I haven’t worked so hard in years !

But look at the results already,

Prepare to be amazed they are so big and bulky.

Arney would be so proud,

Fighting our battles standing out from the crowd.

Look at all the muscular definition,

Rambo these are my guns, I got my ammunition.

Say goodbye to those bingo wings,

Not carrying around useless wobbly things.

I’m ready to face the world today,

Don’t get in my way or it’ll be a high price to pay.

I was weak but now I’m getting strong,

Was lost but now I finding out where I belong.

I shall flex my big guns with pride,

I’ve worked hard on them I’m not hiding anymore at home, alone, inside.

Joanne Quinnell

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 .