Tag: Awareness

Family Appreciation post: Your caregivers have lives too.

~ Rachel Marie Writer ~ Leave a comment

So as you all know I’ve been suffering with 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 Popins film as I kept needing the loo. So I took the laxatives. From 7:30am till 6pm I’d been on the toilet 9 times.

I want to say thank you to my mum for her unrelenting patience as she put my 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 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?

~ Rachel Marie Writer ~ Leave a comment

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 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 nuiscence (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 doewn my cheeks as I comptemplated 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 standup 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

My Disability and Me: accessible transport

~ Rachel Marie Writer ~ Leave a comment

It seems to me that when you have a disability you have to think ahead where ever you go and that includes transport. They’re been a number of times where I wanted to go out somewhere on my own,spontaneously to use the taxi and I’ve been told for wheelchairs you have to pre-book. It’s fair enough when you consider the cost to buy an accessible vehicle, the money to run it and finding patrons who want to use it. A lot of the taxi companies I’ve used I’ve had to pre-book between the hours of nine and 4 PM due to them being on schools. Some days they don’t even run taxis at all!! 

The best route to buy me a not too bad, i’ve never had a problem with space on the bus taken up by buggies but, on several occasions I’ve seen drivers not meet my eye when I am at the bus stop because they are too lazy to get the ramp down. Well, people like that shouldn’t be doing those jobs.
Trains I find are okay as long as you sweet talk aguard into finding space for you on carriage. Where I live there pretty good with the ramps when you are getting or getting off.
Thankfully now that my mum has a road car the van stays with me all of the time so kim and I can go to lots of places, for example, today we are going to Cardiff Bay!
I just wish that if I wanted to travel independently that my needs would be accommodated for whatever time of the day.
See @shonalouise twitter to see her on going fight with a bus company 

Embarking on a new project..

~ Rachel Marie Writer ~ 4 Comments

Hello everyone!

I hope you’ve had a good Christmas? I’ve just finished a good book called Speechless by Kate Darbishire about a girl called Harriet who has cerebral palsy starting secondary. I read it within two hours, it’s amazing that despite our different severities of Cerebral Palsy it was comforting to see that she went through the same struggles I had in school. My question to you dear reader is this; would you like to read about the highs and lows of my school days? I feel in regards to Disability and in particular teens going to mainstream education that things need to be changed, things that should have been changed and abolished in the 70’s and how at the same time how I was treated like a normal student. I feel like this is the right place to start. FYI to all old teachers and friends nicknames will be given to keep you anonymous!

Should I go for it? Even if I don’t publish it, I think I’ll do it, it’ll be cathartic!

ME Tips – A survivors Guide

~ Rachel Marie Writer ~ Leave a comment

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 s 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!