young carers awareness

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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

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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 😊

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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 ❄⛄🎄

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Don’t You Cry …..💦

I’m not going to lie, this is going to be a very emotionally charged blog with some colourful language. If you are easily offended please don’t read any further…..

My quest for more independence has started off very rocky indeed.

I’m honestly feeling like someone’s having a laugh throwing things in my way, like the Trueman show with Jim Carey , just to see how I respond to situations.

I’m writing this listening to Don’t Cry – Guns and Roses (Well it was on when i started writing) . I actually want that song played at my funeral . Not to be morbid but for everyone to remember good times. I try my best in situations to always take the positive and not dwell on the negatives but sometimes……

So it was a very last minute camping trip as it was my daughter’s 18th birthday Party and we are skint.

We scraped the pennies together and booked our favourite place Haven Lakeland.

Before i go any further I have to say that everything that has gone wrong has nothing to do with the site ( apart from the dickheads that must have misread and thought their tent was sound proof as well as waterproof as they partied, argued etc til gone 3 most mornings ) You always get them . Haven Lakeland is still fab and they are improving, modernising facilities all the time. I 100% recommend it to everyone.

So hubby drove us up on Wednesday . Set the tent up and got all the sleeping gear out etc . He then left us to it. He has to work still and he hates camping and bitches and moans all the time about how miserable he is and everyone knows about it so everyone becomes miserable.

Annabelle is nearly 15 then I have Sam 12 Theo 9 Denzel 7 . They know they have to help me and they have been bloody amazing.

The one with the stripey top is a member of staff we met from last year . She doesn’t work here anymore but came to go swimming with the kids because they needed an adult.😁

So Wednesday afternoon I noticed the middle tube on our 8 man tent getting floppy, it was deflating. We (Sam) checked the valve , repumped but it went floppy again☹

Tried contacting Gelert for support regarding spare parts but no response from them .

We thought we’d best try repairing it . We got some gaffe tape from the lovely warden. We found that the valve had small fractures around it. The tape didn’t stop it but it slowed it.

The rain started and it leaked through the tent too. The tent isn’t even that old. I bought it from sports direct it’s a gelert bala 8. It’s an air tent and was bought to make camping easier but it seems that the quality is rubbish.

We get to Saturday and the the zip to close the door on the tent is now broken and I’m actually thinking that it’s a bad dream .

Tuesday 10th April

So we got home …… my whole body aching from having to use my manual wheelchair with the kids and me all taking turns with the pushing.

My Legs are still shaking from being cold for days

The kids don’t seem to feel it the same and that’s all that matters is that they had a good time.

I have learnt to smile even though I often feel like crying . Oh i felt like crying everyday this camping trip. I’ve become an expert this last 7 years. Hence the title of the blog ‘don’t cry’.

Put a mask on for the sake of those you love dearly. It’s not fair that they suffer because you are. It takes a lot of energy but I love them.

Every day that I’m breathing I’ll keep trying to get involved as much as i can .

People often say to people who are disabled or have a chronic illness, you look well etc but that’s because we have some makeup and a smile on our faces. Oh and we got dressed lol.

On reflection my kids had a great time

That’s all that matters. I will recover. Hopefully Gelert will repair our tent and we can plan our next one 👍

I don’t want my kids to cry over me just remember GOOD times and we are going to have plenty still.

*excuse grammar spelling so tired

UPDATE 2ND JUNE

So after several messages, tweets, Facebook posts Gelert finally got back to me about a replacement tube for my tent which has only been used a handful of times and was just out of warranty. Gelert only responded once via this email then nothing.

I have ALWAYS expected more than 12 months out of a tent and I also think that a tent should be build to withstand elements etc and bloody last more than 4 trips before falling apart. I tried asking and asking for the manufacturer of the tent but GELERT won’t provide that .

The problem was the actual valve where you blow the tube up it fractured almost and the others look like they are showing signs of doing the same.

I have been asking and asking Gelert about purchasing replacement tubes as the tent is supposed to make our lives easier and last us for years to come . I can’t afford a new one. The Gelert bala air tent range haven’t been out that long either .

This was the message I recieved…….

The family tent I invested in to make our lives easier is now turning out to be a heap of rubbish and the customer service from Gelert is appalling.

SO MY ADVICE TO YOU ALL IS TO THINK TWICE BEFORE YOU BUY A GELERT TENT AS THEY PROBABLY WONT HAVE THE SPARE PARTS AND THE TENTS AREN’T LASTING MORE THAN 4 TRIPS . I HAVE ALWAYS BOUGHT GELERT AND THOUGHT IT WAS A BRAND TO BE TRUSTED ……HOW WRONG WAS I .

Joanne Quinnell