My daughter has Cerebral Palsy

https://www.sheknows.com/parenting/articles/976787/parenting-a-child-with-cerebral-palsy/

– She knows.com

A mothers story about coming to terms with her beautiful daughter having cerebral palsy. It’s not just the disabled people that deserve some ‘inspiration’ comments and a pat on the back, it’s the parents too.

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Boy learns to walk again after retraining his brain.

https://www.dailymail.co.uk/health/article-2624449/Boy-cerebral-palsy-learns-sit-crawl-walk-frame-special-school-helps-retrain-brain.html

Such a lovely story, it popped up on my Facebook timeline and I want to share this with you. This just shows that if you’re willing to give a 110% then you get what you want. I’m also thankful that medical professionals like these exist.

His family must be really proud, because it’s not only his blood, sweat and tears, but theirs too.

Health and safety gone mad? or, a case of discrimination at Trampoline Center?

From Disability Wales

A girl with Down’s Syndrome was refused entry to a trampoline park in Birmingham due to a health & safety policy that wasn’t promoted anywhere on the website. Have you ever turned up for activities or trips with a disabled child to then be denied access?

https://www.birminghammail.co.uk/black-country/visit-flip-out-sandwell-trampoline-16186022

Why isn’t their policy online to read? Sounds Shady to me. If the little chick had mobility issues then I could understand but, she doesn’t. It’s like going back to the 70’s where they could exclude disabled people just because they could.

IT’S 2019! Why does this still happen??

My mental health action plan

As you know I shared a very honest post yesterday about my mental health? Well here’s how I’m going to get better/ be more social:

My carer hit the nail on the head, I associate pain with being out.

The Plan

Monday: Bath Day – A carer will have my car on Monday for two hours where I’ll be able to run errands into town and keep a personal beauty maintenance i.e.: wax legs, gel polish, hair died, eyebrow wax. I’ll then be able to pick up my writing magazine from WHSmith’s as well as my other periodicals like Cosmo, fiction Weekly.

Tuesday: Bed Bath – I have an hour so I’d like to go for a walk and maybe stop at the garden centre for a cup of tea. Book appointments for my eyes, to see the nurse, hair etc.

Wednesday: Bath day– This will be my library day because even though I like to read books on my kindle I still like to go and see what the library will have to offer. Also I’ll be printing out forms I need for my online degree course and filling out my bus pass form and posting them on the same day so I don’t have to rely on my mum. Perhaps I’ll join the evening bookclub and because it’s lighter evenings I can walk home myself.

Thursday: Bath Day – Skills day. I want to learn to cook a basic meal and practise things when I’m living on my own such as folding clothes, washing up, makeup application, hairstyles and pick out my outfits for the week.

Friday: Bed Bath – My ‘day off’ i’ll try and maintain going for an hour walk after lunch. But this day will mainly be relaxing, again chasing appointments and ordering medical supplies, making sure my prescription hasn’t run out. Plus blogging and book stuff

Saturday: Bath Day – Whilst my parents run their usual errands I’ll get in my chair, go for a walk and spend the rest of the day writing down the garden center. Home by 3:30 so carers can put me to bed – mum and dad respite night.

Sunday: make a point of ringing Sue, Roz, Craig. Check in with the girls on Twitter. Do something nice with family instead of watching sport – F1 excluded.

Why have I put my wash days in bold.?

Sometimes I get so down or in pain that I don’t want to bother with a bath, getting dressed or brushing my hair. This motivates me (this will be printed off and put on my bedroom wall and fridge.

Other aims

  • Have a portion of fruit with every meal
  • Have a proper breakfast like cereal or toast
  • Toast isn’t Lunch
  • Remembering to put fuel in van
  • Keeping up with hydrocortisone
  • Try and stay up till at least 8:45pm

This plan is halfway to getting back to my bubbly fifteen year old self before my back got injured – the rest is up to me.

Thank you for all the love and support and even though it feels though your worlds falling a part take a breath and take control.

Thanks for the love and support!

RM.

Don’t be embarrassed to talk about Mental Health, if you need to – go and seek help.

Monday Rant: Staff ‘refused to let a severely autistic boy, 15, onto a Ryanair flight from Alicante after trying to charge his family a £25 carry-on fee for the teenager’s comfort doll’

This is ridiculous, nothing shows me with this airline. They are an utter farce. This poor family, not to mention how they ridiculed him in front other passengers. Travelling with a disability is hard enough. Don’t make it harder.

https://www.dailymail.co.uk/news/article-6972105/Ryanair-tried-charge-autistic-boy-25-fee-comfort-doll.html

Well done Jet2 for stepping up to the plate. Compassion for disabled people and

anyone for that matter.

it’s incidents like this that put disabled people off of travelling.

We don’t need to more barriers, we need human common sense.

What do you think? Get involved in the comments.

If you are planning on travelling especially in a wheelchair please see my ‘ Travelling with a wheelchair tips’ post in the Disability category.

Mental Health Update

Dear readers,

Whilst my online persona and book are getting more recognition, it makes me happy for a second.

Then the gloom comes in. Whilst I’d love to get out independently this gloom hugs me tight like a weighted blanket and I don’t know why and finding it really hard to break free, no matter how much tough love I get, it makes me feel like a failure because I can’t even prove them wrong. Now usually that would give me the kick I need. I just don’t know what’s stopping me being bubbly…

The first step is to see the doctor. The second is to maybe see a counsellor? I think this is the first time where I’m envious of people enjoying their 20’s! For the first time ever my disability is controlling me instead of me calling the shots and that’s tough.

All I know is I have a great support system who may be frustrated but I know who loves me, even when they are being tough.

Phew, confession over! I know I need a cuppa (maybe joining slimming world will help give some confidence??

I know one thing, less TV and less junk food and a walk once a day before my uni degree starts and I’m swamped with work!

The fact that I know my signs of slipping are good so I can find away to fix them and go back to being me.

Take care of yourselves and be patient when loved ones are being tough – they don’t like seeing you go through this.

Love,

RM

Health update

Well, I’m pretty much flaring everyday.

The doctors have upped my 12 hour MST to 40mg instead of 20mg and has it helped? No. Because of this dose change I now take Senna once a week. This week it’s taken me three weeks to go to the loo.

Have I heard about my injections? Nope. I’m ringing once a week now. I’m getting numb legs and arms at night and my sciatica is going off like fireworks.

I’m also getting really bad migraines so I’ve got an eye test Saturday and I keep feeling sick and wanting to sleep.

But, I am grateful for my family especially, my mum who’s most patient. She’s my angel. She’ll be exhausted from work but doesn’t mind running out to the shop to grab what I’m craving just so I eat.

Still waiting for a new wheelchair and then no more excuses I will be going out.

Updated? Good. I’m going to nap.

I hope you like some of the new content on the blog and I would appreciate if you check out my book on Amazon. The link, blurb and reviews are on the poster below. It’s only £1.99 on kindle and £4.75 for large print.

Ask your library to order you in a copy! Or treat yourself in this immersive romance in a timeless era.

Check out my romance book that you can buy on Amazon for £1.99 The blurb and reviews are below https://www.amazon.co.uk/dp/B07MF1XV2N/ref=cm_sw_r_sms_c_api_i_EgnmCbQBWRPGJbud