Flaring big time today

As you all know I want to the hairdressers (before having to jumpstart my car) yesterday and I spent three hours getting my hair done and being pampered the only thing is it my back to be at the basins and to be in my wheelchair for so long. The result? I’m beautiful but, fuck me I hurt.

So today I haven’t even gotten dressed and basically did book promotion from my iPad in between naps and food. Does anyone not eat proper meals when flaring? All I want is seeded toast, bananas and green apple and yogurt,

Before you ask yes I will be taking it I will be taking a diazepam tomorrow to try and reset my body. I don’t even know if I’ll stay awake for Call The Midwife. In my chronic fatigue case I managed to spend £27 on kindle bags so at least I’ll have a lot of books to keep me occupied for a couple of days.

Source: weheartit

The proof copies of my book came for Carefree and Consequence, they look awesome. If you haven’t got your digital copy or paperback there is a link in my blog that will take you there. I always appreciate reviews however small.

I hope my fellow spoonies are okay?

Looking forward to setting up my author bank account for my royalties tomorrow I’m doing taxes with my grandparents. I want everything to be a bit bored so I’m saving every seat related to writing whether that be computer software or stationery. I was surprised at how much you can claim back on expenses.

PS I also applied for a flat in Talbot Green today.. wish me luck!

Lots of love

RM x

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New wheelchair fitting

so yesterday I had a wheelchair fitting. I was not letting the bloke leave until everything t was perfect. I’m also upgrading to a salsa quickie mini, plus shoulder straps so my spine stays upright.

I can’t wait, with the chair I have, I leave the house once a week.

I can’t wait to go back to bingo and spent two hours in Waterstones just browsing the bookshelves. It’s silly the little things you take for granted. I can’t wait to have my independence back and finally go places on my own for example, hour excursions to the shopping centre will simply people watching and eating ice cream at the beach on a sunny day

Can’t wait till it comes don’t worry they’ll be plenty of pictures on my Instagram for you to see:-)

Until then I’m promoting carefree in consequence which you can get on my blog and there are links for my various social media. My library is even considering let me do a book signing. I also have a local independent bookstore interested all I have to do is send them a copy of the book and sign the contract.

I hope you enjoy it and I hope the paperback quality is its absolute best because that’s what I want my readers. It would be really nice if you could leave me a review on Amazon as well ❤️

Rachel Marie Update.

My back has been bad this week, I couldn’t bend or twist. By Tuesday I can’t take it anymore so the doctor prescribes me Diazepam, it’s eased off a little now but the cold weather isn’t helping.

I’m still backed up like a New York sewer…. ugh it’s a catch 22 with meds!!

I’ve started working on freelancing/proofreading and I’m enjoying it. I ❤️ the feedback on my blog!!

Don’t forget you can message me any time if, you’d like me to give my opinion on a certain topic… but for now, I must nap.

I am also happy to report that I’ve sold 13 copies of my book so far, I’m told that because I don’t have a huge profile or following that it’s pretty good going!! Don’t forget to buy your copy too. Just head to the page on my blog. Don’t forget that I’ll be doing an interview with Spoonie Association very soon.

Cannot wait to have my wheelchair assessment next Friday and talk to my social worker about reinstating my night care and living independently.

Images and graphics disclaimer.

All my images come from weheartit.com and pixabay.com

I don’t own these images and all credits go to the owners, thank you whilst I borrow them.

For those that have asked I create my social media graphics using a web service called Canva, I make these myself with the help of templates. I consider myself a beginner when it comes to graphic design. If I use the persons work they will be credited in the post.

Personal images from family photograph albums will be captioned with my initials underneath.

Thank you,

Rachel Marie

I got my medical shit together like a GirlBoss!

Today has been my ‘get-my-medical-shit-together’ day.

So guess who was overdue for a wheelchair review! Waiting for somebody to ring back with an appointment! (Honestly, their systems for following up appointments is rubbish, you end up doing the job for them.)

I’ve left a message with my doctor receptionist about the spinal injections because according to radiology he hasn’t sent a referral even though it’s in his dictation notes(?) – so, the referral needs to be typed up and sent again urgently as I’m not coping with medication alone.

When they come out to reassess my chair I’m not being brushed off until it’s absolutely perfect. It’s not right to be in pain and only tolerate your wheelchair for an hour.

My point? If you don’t hound and chase up things then you don’t get. Be a #girlboss/boy boss and get your shit done! Things aren’t going to fall into your lap.

I’m quite proud considering I’m woozy from needing morphine last night.

Family Appreciation post: Your caregivers have lives too.

So as you all know I’ve been suffering from terrible constipation since going back on my MST medication, so, on Friday I went to the doctor because by now I looked two months pregnant and was constantly in pain.

So I tell the doctor what the problem is and instead of putting me on alternative medication he prescribes laxatives. So Friday night I’d had enough seeing as I had to miss taking my mum to the cinema to see the new Merry Poppins film as I kept needing the loo. So I took the laxatives. From 7:30 am till 6 pm I’d been on the toilet 9 times.

I want to say thank you to my mum for her unrelenting patience as she put me on the loo each time, it’s not easy lifting a 20-year-old woman. I’m sorry that the weekend was shite (pardon the pun) and I know we came close to blows but, I wanna say thank you. You put up with a lot from me and sacrifice a lot, (which included cancelling your hair appointment this weekend.) if it weren’t for you I would have been a mess. It was frustrating on both ends but, not as much for me as it was for you.

I know it seems there’s always something with me being ill but I promise I’m not doing it on purpose, it’s just a shitty coincidence. I know being carer must be tough and I can’t imagine all the things you’ve missed because of me. But, if it wasn’t for your love I’d be fucked!

So thank you, amazing mum,

If one of your family members cares for you, you need to remember that they have their own needs and lives as well, it can’t be about you 24/7, you need to let them rant, take it on the chin, let them cool off and don’t get mad because, at the end of the day, we could be shoved in homes in Russia or left at the mercy of the Care funding. So just let them know that you’re grateful and don’t take them for granted. It only takes one straw to break the camels back…

With all my book promo and arthritis diagnosis, I forgot to show my mum and dad some appreciation and realise when they need a break.

So I plan on giving them a date night on Friday and see if I can get the care agency to fit in a bed call so my parents can enjoy themselves.

What was it like being diagnosed with depression?

It started in 2015 after I began A levels and a drama teacher said ‘you’ll get nowhere in your acting career with your disability’. To me, I felt my world turned upside down because all my life I’d dream of acting, needless to say, I was at a loss.
I was struggling as my sister went to uni and I felt alone and didn’t really have any close friends at sixth form and my back was deteriorating as was my mobility and independence,
I began to not care about my school work and had no motivation. I hid away when I was at home watching box sets and binge eating. I cried at night and desperately wanted to not wake up and it was New Year’s Eve when I felt like nothing would get better, that’s when I decided to visit the doctor.

I hadn’t realised how much I was holding in; about being unhappy with school because I was treated by the TAs as if I was a nuisance (I was only allowed to use the bathroom twice a day and not allowed to assess upper floors and libraries like others at break time due to the excuse of ‘fire safety’, in reality, they wanted to manipulate us to conform to make their jobs easier.) and how I just felt so worthless after drama.

When he asked me, ‘any thoughts about suicide?’ I hesitated. Then tears rolled down my cheeks as I contemplated holding my breath or holding a pillow over my face. I just continued to cry repeating sorry over and over. At that point my mum, my superhero, just hugged me.

The doctor prescribed me some medication and recommend I get counselling at school.
slowly the fog lifted and through counselling, I found writing courses and planned my escape to another college where I could study creative writing and be treated like an adult.

Looking back I desperately wanted to tell a teacher about the TA but I just didn’t have the strength. I should have, so I can make a difference for other kids.

Now I’m much more confident and I now stand up for myself more. I still have bad days but I just cuddle up with a cuppa and a good book waiting for it to pass. Blogging gives me a purpose I thank my readers and my creative writing teacher Rhodri and Lynda my ex-counsellor