A New Kind Of Normal

Hello there!

I’ve been absent for a bit longer than I meant to, sorry about that.

Obviously my mum and sister have been away, they get back tomorrow.  In my last post I talked about how my dad wanted to “give me a holiday” which meant he had grand plans to do lots of stuff. Unfortunately this has been slightly scuppered by our Great British weather…it’s been raining pretty consistently for the past 4/5 days. We’ve made it out a couple of times, dodging the rain showers. We just went to a couple of really nice open, green spaces in the city where we live.

I was surprised at how anxious I was when it came to actually leaving the house. For so long all my energy has been focused on getting a wheelchair, that I didn’t actually think much about the fact that I’d be able to get out a lot more. I’ve never really thought about whether I’d become slightly agoraphobic, but I think maybe I have. I guess it wouldn’t be surprising, I’ve been ill for 3 1/2 years, and been housebound for the majority of that. I don’t really know what I’m anxious about, so it’s impossible to explain to people.

Anyway so the first time I went out it my dad just pushed me around for 10 minutes and then we went home. The second time he pushed me for about 10 minutes, then we sat for a bit, and then he pushed me back.

The first time it was weird. I was anxious about being outside, it was the first time in the wheelchair so I was feeling self conscious and felt like people were looking at me. I was glad that we didn’t stay out long. The second time I felt a less anxious and self conscious, so was able to enjoy it more. It was so nice to feel the sun on my face and the wind in my hair (and boy was it windy).

We were supposed to go out again today, to a bookshop in town just to have a browse as that’s something I’ve really missed doing, but we had to stay in and wait for a delivery (which still hasn’t turned up – very annoying).

I’m very glad that I have the wheelchair, but I’ve been forced to realise it’s not like waving a magic wand and I can now go out all the time. Apart from having all my other symptoms to contend with, I have the anxiety, although I’m hopeful that’ll get better in time. Plus I actually have to get used to the idea of being in a wheelchair, which is not something anybody wants when they’re 22. It’s not normal, but it’s a new kind of normal.

Until next time. Rhosyn.

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Some Big News

So firstly I want to say thank you after all the lovely comments and advice I got after my last post, it was really really helpful.

Yesterday I managed to talk to my parents about how terrible I was feeling about the prospect of going away. I had another counselling session that day and during it I basically decided not to go because I felt it would do more harm than good.  I managed to get across the main points. My parents were very disappointed, but today, after they had got used to the idea, they seemed to be ok.

The main problem is that they don’t want to leave me alone, because they’re worried that I won’t be able to look after myself, so it looks like my dad is going to stay behind. This is the last thing I wanted to happen, because it means that once again because of me, people are having to change their plans, and not do something that they want to.

I thought I’d feel better after I had the conversation with my parents. I did feel happy after I initially made the decision, but now I don’t really, I just feel horrendously guilty and sad. I know that I’m doing whats best for me, I know that going would be a bad idea, but when I saw the disappointment in my mums face and found out my dad was sacrificing his holiday for me it made me so sad.

I always feel this crippling guilt after I’ve made a hard decision, especially relating to “not being able to do stuff because of my illness”. I don’t want to do things to make other people happy even though they’ll be detrimental to my health.

Something else really big happened yesterday, I got a wheelchair! It’s kind of been overshadowed by all this other stuff. So the excitement I have of finally having one has been dented. Hopefully it will come back now everything is all sorted. I can’t tell you how much I’m looking forward to actually be able to leave the house!

It’s only on a short term loan from The Red Cross but it’s still so exciting!

 My dad was making all sorts of plans of stuff to do whilst my mum and my sister are away, because now that we have the wheelchair a whole new world of possibilities have opened up. He kept talking about wanting to give me the holiday experience without the stress of actually going away. It made me so grateful for him, he is incredible.

Anyway, I’m glad I’ve ended on a positive note, I feel like I’ve not been able to do that in a while! Onwards and upwards!

Until next time. Rhosyn.

At A Loss

Would you believe this is the fourth time I’ve tried to write this blog post? Well…it is.  I don’t want to seem negative, or seem like I’m being dramatic, but honestly the last week have been one of the hardest I’ve ever had.

This coming Thursday I’m supposed to be going away with my family to the Lake District for a week to visit my grandma. I’m going to be honest and say that the prospect of that has caused me more stress and anxiety than any other single event I can remember.

I’m housebound, I can’t walk more than 20 meters, I can’t spend more than an hour or two out of bed, and yet somehow I have to sit in a car for 7 hours. That prospect doesn’t just cause me a bit of anxiety, it terrifies me. Just writing this is causing my heart rate to increase.

I don’t know how I’m going to do it, or even if I can. But I don’t know how to say this to my parents. I tried to talk to them earlier in the week, but they just tell me “there’s nothing you can do, so just stop worrying”…which is about as much use as telling someone who is drowning to just stop it.

It’s impossible to explain to someone who isn’t chronically ill and whose never experienced anxiety or depression quite how you feel, and you certainly can’t explain why.

I know I need to say something…but it’s so difficult, how do I start? Where do I begin? How can I make them understand how desperate I feel? And I’m scared of their reaction…

I don’t know what to do…

giphy-1

Very Up And Down

Hello there!

This last week has been a bit of strange one.

Usually my energy levels and accompanying symptoms stay at a relatively steady level. I have slightly better days, and slightly worse days, but it’s mostly the same.

However the last week, or 2 weeks really, I’ve had some better days (that are above normal) and then some really really bad days.

For example last Saturday. I had acupuncture at 12:15, which is really early for me to be up and out of the house. My parents had to go to a wedding so I had to get taxis both there and back. Unfortunately neither taxi turned up, I was late getting there and leaving, and it was very hot. Usually this would send me into a tailspin of anxiety, and although I did get a bit stressed I didn’t have a panic attack and feel like crying, which I see as a huge achievement. On top of that although I was very hungry and tired when I got home, after eating and lying down for a few hours, I felt able to go and sit in the sunshine in the garden for a few minutes, which is rare on a day when I haven’t had to do anything else!

But then I’ve also had really bad days, such as yesterday. I swear that yesterday was one of the worst pain days I’ve ever had. Generally my pain levels are low and I feel lucky that that’s the case. It’s usually a 4, maybe a 5/6 on a bad day. This was a solid 7.5. Obviously I took painkillers as soon as I could, but they didn’t kick for 2 hours for some reason. During those two hours it was pretty unbearable, I couldn’t move. I actually didn’t know what to do, I had one of those “I can’t do this, I can’t do this, I need it to end” moments, I’m sure people who have chronic pain know what I mean. All I can say is I feel so lucky that my pain isn’t that high on a day to day basis, I am in awe of you who manage it if it’s like that for you. Luckily the drugs did kick in eventually, and the pain went down to a manageable level.

Today I’ve been feeling not too bad, still weak and extra tired after such a horrible day yesterday, but basically ok.

Will take it easy tomorrow as well. It’s the Wimbledon men’s semi finals so I’ll be watching that all day.
Until next time. Rhosyn.

6 things I’ve been loving in June

Hello there,

So another month is over, and I want to tell you about all the things I’ve been enjoying.

1. Roland Garros, otherwise known as The French Open. I’m a tennis nerd, it’s the only sport that I properly follow. Obviously being British, my favourite Grand Slam has to be Wimbledon, but I also really enjoy Roland Garros. I watched pretty much the whole thing. I like to have it on in the background when I’m reading.

rollandGarros

2. Now I’ve never put a food on these lists, but when I first tasted this it was like I’d died and gone to heaven! Haha. It’s described as rhubarb and vanilla yogurt, with a hint of lemongrass. But what it actually is, is Greek yoghurt flavoured with vanilla and rhubarb compote. I love rhubarb (as you might have guessed from my birthday cake), and oh…my…god..this stuff did not disappoint. It is…delicious! It’s the addition of vanilla that really makes it special. I thought that might make it too sweet, but because it’s greek yoghurt it doesn’t. Plus because the yoghurt is “bio live” I can pretend it’s good for me! haha.

3. My favourite book I’ve read this month is Forensics: Anatomy of Crime by Val McDermid which I got for my birthday. Now my birthday was just over a week ago and I’ve already finished it, that tells me a lot, considering how long it usually takes me to read a book (damn brain fog). Val McDermid usually writes crime fiction, but this is a history of forensic science, split into different sections such as; the crime scene, etomlogy, toxicology, anthropology, and forensic psychology among others. (Thats a lot of logy’s haha).

I found absolutely every page of this book fascinating. She not only explains the process that is undertaken day to day, but also the history and the latest advances of each aspect, demonstrated with real life cases. I feel like I should point out though, this is not a book for the faint hearted, it can get quite gruesome, and I did find some of the real life cases disturbing. However despite this it’s one of the best books I’ve read in a while, and I’d recommend it to anyone who has an interest in this sort of area.

4. A TV show that I’ve been really enjoying this month is Episodes. I’ve been watching it since it started a few years ago and season 4 is on TV at the moment. It’s about two British writers who, after being very successful in the UK, get tempted over to the US to remake their show there, and it all goes disastrously wrong especially after they get forced to working with Matt Le Blanc. Matt Le Blanc plays himself (obviously) but it’s a horrible version of himself. It’s very funny.

p01m63wh

5. I know I’ve showed you this is previous blog post, but I need to have it in this list because it’s so helpful. It may only look like tablet box, but it’s a tablet box with a tray for every day of the week, and each tray is divide into breakfast, lunch, dinner and bedtime. It has made everything so much easier. I don’t have to waste energy on worrying what tablets to take when and whether I’m taking the right ones. I was worried about how much energy it would take to sort the tablets into it, but it’s much less than I thought, once you get into a rhythm.
6. I don’t have a music favourite for this month. I’ve been listening to more audiobooks. My favourite one at the moment is Watership Down (which is also my favourite book of all time too). I bought it ages ago, but have just rediscovered, it’s so comforting to lay in bed, and listen to it as you’re going to sleep.

Watership Down (Unabridged) 1

That’s all for this month. I’d love to hear your thoughts in the comments.

Until next time. Rhosyn,

The Sisterhood of the World nomination

So a few days ago I got nominated for the Sisterhood of the World bloggers award by the lovely Lore from the modern girl’s guide to being sick. Thank you very much to her, I urge you to go check out her blog. The majority of you probably know how these awards work but the rules are that I answer 10 questions and then nominate 7 other bloggers to do the same.

sisterhoodoftheworld

So lets get to it.

Why do you have a blog?

I’ve been blogging in total for nearly 3 years. I first started it to document (what I thought would be) a year out of university. Eventually it morphed into me writing down my thoughts on everything that happens to me as an outlet for the frustration and depression I was feeling. I started this new blog about 4 months ago, as I felt like I needed a fresh start.

What inspires you the most?

Science, every time I read about an amazing discovery it fills me with hope for the future, not just of my illness but of the human race in general.

Favourite animal and why?

Killer whales…nothing and no one messes with them!

What is your favourite colour?

Green/red, they’re the colours of life.

Do you prefer the ocean or mountains?

Love them both, can’t choose.

Tea or coffee?

Tea, always. I don’t drink coffee at all. Earl Grey/mint depending on the time of day.

How many languages can you speak?

Only one, English. I was good at languages at school, maybe I’ll take it up again one day.

What made you happy today?

Finishing my book.

What is your dream?

To get better…

What is your favourite food?

Anything Italian.

Now for the nominations. I know I’m supposed to nominate 7 other bloggers. But I don’t follow that many blogs well enough to nominate them, and I don’t want to nominate just anybody, so I’m going to do as many as I can.

https://indisposedandundiagnosed.wordpress.com

http://katiecupcakelifewithme.com

https://heidijoneschronicillness.wordpress.com

https://thrivingonillness.wordpress.com

http://migrainebrainstorm.com

Go and check out all of their blogs, they truly are all amazing.

Until next time. Rhosyn.