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

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 💞

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 ❄⛄🎄

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 .

Help the Superhero Complete Her Challenge ………

On the 18th of August I’m doing the http://superheroseries.co.uk/2018-superhero-tri/ at Lake Dorney Windsor . I’m not sure how I got involved in it but it came about at a time in my life that has probably helped me so much.

I know that some of you know my story but a very quick recap for those who don’t.

I’m a 43 year old mum of 6. Nearly 8 years ago now I got very sick. Neurological, muscle spasms, vertigo,cluster headaches, vocal chord dysfunction etc etc ……..all at once . I couldn’t walk in the end I am so unsteady , my back spasms and I get very breathless.

I was put on very strong pain killers oxycontin 60mg in the morning and at night except they didn’t kill the pain, they just killed my mind. So I couldn’t move and I was like a zombie.

It was like this for about 4/5 years and I said that enough was enough after going round in circles trying to chase a diagnosis so that I could be put on the right “medication” to “help” me, I wasn’t waiting a minute longer.

During those years my husband had to do everything and try and work too. My children missed out on a childhood and the social care in my area is poor so we were isolated .

We had no support from schools . Charities lets not go there ( that’s a whole other blog about children’s services business’s / charities) . My kids lost out ,I’ll feel guilty about that for the rest of my life.

So i had a complete medication change and finally was diagnosed with vocal cord dysfunction which had been causing the breathlessness and choking episodes etc. The solution is to wear my ventilator when im exercising which helps keep my breathing in rhythm and throat open.

So since the beginning of the year I have been trying to go to the gym everyday ,with 2 ultimate goals in mind . To be able to ride a handcycle with the children and to use a manual wheelchair.

I used to be really active before I got sick. I loved going to the gym. I would put the kids in the creche for an hour and go to a spinning class 3 times a week then a Pilates on a Friday. At weekends we’d go walking and I loved camping. We were an outdoors family.

That first time going into the gym was the hardest. https://downbutnotout.blog/2018/05/27/going-back-to-the-gym/ But I had lots of support and I was determined. I am determined. Even when I’ve done the http://superheroseries.co.uk/2018-superhero-tri/ my journey isn’t over, it’s at the very start. I still have to keep building my strength up . I still need to keep losing the inches. I’m trying to get a support group for families and young carers in our area organised https://www.facebook.com/groups/1556840474401957/

The main thing is focusing on being a family again. It’s difficult to know what positions we are in the family. I often feel fairly useless .

It may not seem like a lot to some people but I’m as chuffed as anything to be doing it . Even if it takes me all night I’ll complete the 20km it’s more than the distance. It’s about mending a broken dream same as for the charity I’m raising money for

http://www.kartforce.org/about-us/

I’m honoured to be racing with TeamBrit http://www.teambrit.co.uk/

Jamie Falvey https://m.facebook.com/JamieFalveyRacing/?locale2=en_GB is my captain.

Really looking forwards to seeing all the other superheroes there and as long as we all have fun then everyone will be a winner 😁👍🏆

If you do want to sponsor me please being follow the link below https://www.justgiving.com/fundraising/joanne-quinnell

Thankyou so much

Joanne

Panicked…..

Ok not quite sure how you people are taking me but the new Twitter page and Blog although set up with the primary target of reaching out to others and trying to raise awareness for disabilities and activities in the community; it’s also intended to help me on my journey .

I still don’t know who i am . Circumstances meant that i became a very strong individual person at aged 17. It was scary then but i bloody loved it. Bit by bit i felt like my body absorbed the worlds energy and sometimes naively felt untouchable. Luckily appart from a couple of battle scars from coming off a push bike oh yes and nearly drowning once from getting stuck in the mud whilst cleaning the barnacles off the hull from a RIB , I’ve got lot’s of brilliant memories.

I’d learnt not to lean on anyone a bit like me Tarzan and Jane.

Fast forward to now………………………………………..

From my other blog you’ll already read that i feel lost . That after becoming ill and having someone do everything for you is so hard and demoralizing. People talk to you differently. I couldn’t be the mum i was, the wife i was the person i was it was like i didn’t know who the “fudge” i was anymore. I didn’t recognise more to the point i detested who I’d become .

This is still a journey for me because you can’t slip back into your old pair of shoes. You can find some new ones that are comfortable but a different style.

So back to the title ‘Panicked ‘. You all know I’ve been going to the gym for the last 3 weeks. Everyday I’ve been slogging away and loving it . I love exercise and i think it’s getting that control thing back. I always start my training by working on the handcycle unassisted no breathing machine to see if my lungs have improved any. Then move to my assisted (with my ventilator on) which are coming on in leaps and bounds by the way 1 1/2hrs today . The personal trainer who is helping me is going above and beyond to support me. It wasn’t easy to go back to the gym from what i was to what i am but because i know him and trust him i did it.

The problem is the Horrible Man is being selfish next week and taking a week off for annual leave. How bloody rude ! How can he do this to me , i need him 😭.(Only Joking). I mean i do just get on with it now in the gym but it’s just as a just in case case am i being silly ?.

So this 43 year old a mere shadow of her former 17 year old self cried when he told me today. How stupid. I hate myself for it too because it’s not what i want to be like . All night I’ve had anxiety. I really don’t want to not go and i owe it to my kids. I’m going to try but i am worked up .