Health update… read the news about carefree and consequences and don’t forget to buy your copy.

So the injections that I thought were going to ease my arthritis aren’t going to happen. All this because my arthritis is no longer in my joints but is now in my muscle tissue I asked the doctor about steroids and she wasn’t too nice about it I even asked for diazepam and repeat prescription but all she kept banging on about was addiction.

Meanwhile I’m in daily agony. All that she says was she was going to refer me back to the original department where they can deal with me.She make me sound like a 20-year-old begging for drugs just to get high not to function.

I only found out because I chased up radiology by phone. When I said to the doctor about this she said ‘oh I was going to drop you a line eventually,’how long is eventually?

Myself and my mother are going down there some point this week to sit face-to-face to her and drive home how serious the situation is. She had no empathy even when I was crying on the phone, she did not understand how much this is taken of my life. I’m also reporting her to the general practice board because she was so rude and kept talking of me when I was trying to explain things, making me frustrated.

So whilst the specialists play tennis back and forth With what to do about my health I have a few Diazepam’s left, Naproxen which doesn’t do shit except make me tired and morphine that just turns me into a zombie or an itching, sweating mess.

When I know more I’ll let you guys know as this is the purpose of my blog. By the way my Ami flared up massively today so I couldn’t go on a picnic with my carer, I literally spent the day sleeping with a massive migraine.

But never mind I’m just focusing on selling my book and counting down the days until I see Michael Bublé. You need something positive and keep to going right?


Don’t forget the carefree and consequences is available to buy on Amazon. It even has its own dedicated page on here where you can read peoples comments and reviews. Some people like it because it reminds them of Paul’s Zindels ‘darling my hamburger’ It is set in the 1950s and has a similar storyline to mine. Did I also mention? Carefree consequences, is being turned into a series with the three books?

I’m not done with the Alexander family and their friends just yet.

Read the first one while you can.

Advertisements

ME: A survivors guide

Tips are my own and may not work for everyone – consult your doctor before making any major changes to diet or medications. Organise your medication for the week – I’m ashamed to say my mother does this for me. It’ll be easier especially during brain fog where you don’t have to think of what tablet to take. Say there’s a TV show you want to watch at 9pm but it’s too late for you? Well take an hour and half nap in the early afternoon because you’ll be refreshed but by the time 9pm rolls around you’ll be tired enough to sleep through the night later on. Don’t beat yourself up about flare days or having to cancel on friends – they should love you enough to understand, you already feel guilty and you don’t need added pressure on top. Make the most of good days even if it’s just a walk outside If you’re like me and whilst your body hurts but your mind is racing, let audiobooks/colouring become your best friend or treat yourself to a Netflix subscription. Natural sunlight is the best medication – typically the more vitamin D I have the more improved my ME is. Understand what’s a flare and what’s not – a diary is helpful thing to have especially when visiting the doctors. Flick the bird when someone says ‘Your illness isn’t real.’ You live it, they don’t. Keep hydrated Regular toilet visits help especially with all the meds. Anti depressants help – an invisible illness is hard to deal with Don’t get your hopes up about trials and new research. Connect with the chronic illness community on social media – you are not alone!

Life in a wheelchair: A summary

Dear able-bodied people, this is the summary what it’s like to be in a wheelchair and I hope you never find yourself in that situation. But,if you do, be prepared to be the ‘inspiration’ to your friends, even strangers just for doing silly things like; taking a train ride without a ‘caregiver’. Of course you’ll face discrimination but of course ableism too and the list below is just a small insight:

1) When you take your wheelchair for repair, you won’t see it again for 300 years.

2) people immediately use singsong tone of voice when they see a person using wheels.

3) You always have to act grateful for help you didn’t need.

4) A shop isn’t accessible if it’s got a tiny step at the front.

5) People pat your head and bend down to you.

6) Don’t leave your chair in the sun, you’ll burn your bum when you get back in.

7) You will be confronted with the miracle in the alcohol meme and so called friends will find hilarious.

8) You always get the view of people’s behinds.

9) doorways being too small.

10) Ableism and inspirational porn.

At my mentors book signing

On this day my best friend gave me a typewriter; was the day I became a writer

The rest of thee photos show me in my wheelchair in New York City on a visit in 2014

All personal photos ©️ Rachel Marie.

I hope you all enjoyed this post and have learnt something from it. It is so easy to fall into these habits, people in wheelchairs are just people who want to get on with the day, not to necessarily be your inspiration or make you feel good about yourself if someone in a wheelchair is asking for help and doing it for praise or major props with friends and family. You don’t help someone because you feel sorry for them You do it just because you saw another person struggling to get through the day and needs a hand to make it better

You don’t get an instant helo around your head. Be aware of ableism, it can be very patronising and eeven border on bullying help us in the disabled community stamp it out by not doing the things on the above list.

Many thanks,

A Wheelchair user, who is also an author and has Chronic fatigue syndrome but she still remains to be bad ass with her humor and has a wardrobe bursting with vintage clothes… My friends think she has a shopping problem not just the vintage clothes for her on dying love for reading and needing a box to writing my friends think she has a shopping problem not just the vintage clothes for her undying love for reading and and need to buy notebooks to wwrite her short sttories in

By the way, my debut novel, carefree and consequence is available to buy on my blog for which will take you Amazon. The reviews speak for themselves. Available in paperback, hardback large print and, kindle. You don’t actually need a Kindle device to read this book you can just download it from your App Store. Or aask in your local library to order you a copy.

My second project is completing a list of writing prompts and putting them together in an anthology for sale. There are so many genres I can showcase then with this book. You can see my romantic side, you can see my funny side, you can see my spooky side, you can see mmy thriller side and you can see my serious side too. It will be a mixture of poetry and prose and trying to finish it by March 7 2021.

For now, go buy my book and see how you like my romantic side and love for the 1950s

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 books. 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

Arthritis update.

So this morning I got my appointment through to have the steroid injections in my back, it’s next Monday. It can’t come soon enough! I just hope they work, I’m sick of taking morphine with it not doing anything. Hopefully after that my GP will finally put me on some anti inflammatory.

If any of you have any tips of how to manage spinal arthritis please let me know! I’ll try anything!

I’m currently waiting for a new arm chair and waiting to get my wheelchair adjusted. They say that movement is best but when you’re wheelchair bound, that kind of goes out the window. It pisses me off that my body is so complicated!

I have anxiety about going outside just in case it’s cold or wet and I flare up! It’s ridiculous! I know they said winter was going to be tough but I didn’t imagine flare ups every week!

Does anybody else get a headache when your pain flares up?

Please drop me a line, I’d love to get to know some other young adults with the condition.

Love,

Rachel