Thursday 26 May 2022

10 things I can't live without

1. Coffee

I do like to drink tea and herbal tea too but I do like to start my day with a nice cup of coffee especially if has come from my coffee machine. It's my little treat to start the day before Diane my PA arrives and the day begins.

2. Nail polish

I have more nail polishes than a dare count! I love doing my nails and nail art.

Fun fact: I'm a CND qualified nail artist. I did a training course to learn how to apply Shellac. I would love to Shellac my nails more often but it takes time to set up, do the whole application process then tidy especially as I love if I can to do some sort of nail art.

Having colour on my nails always make me feel brighter.

I love looking on Pinterest for new nail art ideas and inspiration.

3. Hot baths

I do find baths easier and I love to have a good long relaxing soak in a hot bath especially paired with my favourite toiletries like Rituals wash products and Lush bubble bars.

4. Audiobooks

Audiobooks are like my lifeline. I am trying to get back into reading, especially poetry which often isn't put into audio format but I'd be lost without audiobooks. When I was recently in hospital all I did was listen to books as well as that when I'm having a bad day audiobooks are great to ease my boredom.

There's a YouTuber I love called Hannah Hodgson and I've discovered some great books from her reviews and Good Reads account and Hannah is the one that introduced me to poetry and has helped me try out books I wouldn't have considered.

5. My friends and pen pals

I'd say that now I'm in a really good place when it comes to the people in my life; I now have a small but positive and supportive group of people around me. I always look forward to my pen pals letters and cards and a lot of my friends will occasionally write to me too. I much prefer to send messages to people in the mail than via text, plus a card and envelope can be nicely decorative.

6. My giant notice board

When we first moved here I asked if I could get a notice board for my room, only my Dad didn't realised that I was buying a 2m long notice board like the size he has in his classrooms at work. However it's now obvious why I need such a big notice board to display all my mail. It's hung next to my bed and it never fails to make me smile and feel loved when I see what I've put up there and I've collected lots of novelty push pins to jazz it up.

7. My iPhone

I've just got myself a new iPhone 13 (in pink with a sparkly case of course!) and I love it. My old iPhone 7 was starting to get old and I also needed a good camera for filming for my YouTube channel so I thought I'd get the iPhone 13 so it would be a 2-in-1 phone and camera. I'm defiantly not addicted and glued to my phone, my average daily screen time is just a few hours each day but I would feel very lost without having my phone with me.

8. My headphones/ear buds

I'm very hypersensitive to noise because of my M.E but also I like to tune noises out around me like the hum of my air mattress or the sounds of the hoover or other people's music (accompanied with their humming and singing along to the music) and instead tune into whatever I'm listening to whether this be an audiobook, podcast or my own music.

9. Polly

Polly is my doll which I got for my first Christmas and she's still with me though now a little floppy. Polly would most likely be the first thing I would try to rescue if there was a fire. When I was a child wherever it was I was sleeping she would HAVE to come with me but now I can go away and leave her behind.

10. My craft supplies

Where do I start with what crafts I've got! Crochet, card making, decoupage, block printing, painting, macramé, origami, colouring (and probably other crafts too)! Crafting is my thing, it's my hobby and enjoyment and I love making pretty things to send and put in letters to friends and pen pals. I'm also always up for giving new crafts a go and there are some things on my list like I'd love to make some things with resin but I'm trying to use up some of what I already have first but what I have seems never ending!

Tuesday 17 May 2022

I've been missing since 2013

The 12th May marked M.E Awareness Day. I have been missing since 2013; the life I had planned out for me back in 2012 is now just something I dreamt up. I can't think about the past of the future, I must focus on the hear and now; getting from one hour to the next and at the end of the day it's exhausting to know that I will have to repeat all my daily struggles once again.

I started to become unwell in 2013 - that's sort of when my initial symptoms became progressively worse but becoming unwell was something gradual and I just thought it was because I was overworked at Uni and in February was when I had to leave Uni.

Over time my health worsened; I kept going to my GP and was repeatedly told that I had Post-Viral Fatigue Syndrome and my symptoms would ease. But they never did and my symptoms slowly worsened.

Fast forward to the 4th July 2017. I had my first appointment with my FND neurologist and in that appointment my diagnosis of FND was confirmed though some of my symptoms didn't fit with FND and so I was also told that I had M.E. Before the I hadn't heard of M.E and there was no further forwarding referral to an M.E service so I was left to go home, research M.E and find out how to live with it.

I'd say back then my M.E would have been classed as 'moderate' on the M.E Disability Rating Scale but now my M.E has been classed as 'severe' but personally I feel that whether your M.E is mild or severe it is still a difficult illness to manage not just practically but in terms of how poorly understood and under funded and researched the condition is.

Since 2013 I have been missing from education, meeting friends, going to social events, going on holiday, employment, voluntary work, on my bad days even leaving my bed and more. M.E has left me feeling invisible to the world and I only really see the same few faces. 

M.E has left me dealing with a myriad of different symptoms affecting my whole body including immune system - it is much much more than 'simply feeling tired'. 

I feel some days as though M.E has taken over and I'm not me anymore; I am M.E.

I try to be positive as the alternative is to be miserable and I'm not one of those 'woe is me' kinda people. When I first became unwell I did feel like being ill was all I had in my life but when I had some sessions with a health psychologist I started to see the other parts of me. I still have to work within the restrictions of my M.E and make adjustments when it gets worse as it has done lately (hence my lack of blogging as well as just sharing videos on my YouTube channel when my health allows) but it's all about balance as currently there is no cure for M.E.

I'm not quite sure how to end this blog post. I've just been typing here and there as my body allows and ironically I seem to have finished this post on a Tuesday which was the day that I used to post on. 

I think in this post I wanted to briefly share the timeline I've been on and also how invisible M.E makes me feel as well as being part of the millions of people missing due to M.E. I wish I could say that M.E is getting greater understanding and research but sadly that is not the case. Just know that if you also have M.E as invisible and missing as you may feel you are not as alone as you may feel you are.