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You may remember way back when I wrote a blog post looking for one day projects to keep me occupied, well today I decided to go even smaller and start doing five minute photography projects. These projects will consist of running around the flat taking photos on a specific theme. The idea (obviously) isn’t to take amazing photos which will one day sell for millions, the idea is to get me being creative. These projects are something which (1) bring me happiness without completely draining my energy, which is good for my depression; (2) they keep my creativity alive, which is good for my writing; and (3) give me something to get out of bed and do outside of my degree work (I plan to continue them when I am well enough to begin working again) without taking much time away from my studies.

I was inspired to start these projects by two bloggers which I will write about in due course. For now, I just want to quickly share my very raw and unedited photos with you. For me, this blog is a fun way for me to showcase what I’ve been up to but the last thing I would want to do is put readers off if they’re not very exciting for you to look at, so if you would like me to share more photos pop a comment below or tweet me, and if I don’t get much response, I won’t share future projects on here. Sound good? Ok, here’s today’s photos:

 

Famous opening line of which novel? Ten points if you guessed ‘Pride & Prejudiced’.

I LOVE Austen. What better way to read her novels than with her little face looking at you?

Quick quiz- who wrote all of these books?

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

K-K-K-Katie, K-K-K-Katie, you’re the only K-K-K-Katie I adore…

Smile for the camera!

This was sort of an accident, I didn’t mean for the Queen to be poking through an ‘m’ but sort of worked out quite well since she is your Majesty.


So far my plan to spend my internetless weeks reading and writing more is working, I’ve written a couple of letters and have almost finished a book which I only began reading on Saturday.

Paulie and I before we left the house

But, the real topic of this post is the summer ball! Paul and I have been together for over three years but this is the first ball we have been to together. I took getting ready for the ball VERY slowly so it took hours but I wasn’t exhausted when I left the house. I love dressing up so it felt so good to be going to an elegant ball in an elegant dress, but the thing that ruined this princess moment was my ride. I commented to Paul that it wasn’t exactly the best accessory for my outfit. His reply was a little bit profound I guess, he said, “it may be a pumpkin, but it’s still a carriage”. Gently bringing me the reminder that without the ugly chair I wouldn’t be in university, let alone attending the ball. This reminded me how lucky I am to be to go to a ball, when so many spoonies are unable to. I am so lucky to have him to push my wheelchair, without P I wouldn’t be able to go anywhere, even with a wheelchair.

When we arrived, because Paul has been elected to an officer role, we had a VIP reception in the garden with champagne and a free BBQ. As we munched on our burgers, I was wiggling along to the big band music. One of the things I miss the most is dancing, so I just try and do a form of it in my wheelchair. We also got a caricature of us drawn, thankfully the man wasn’t too harsh on our features.

The red carpet was clearly laid especially for me

I had taken a lot of painkillers, as in a lot more than my dosage, so that I wouldn’t be in pain, especially because my pelvic condition was playing up. Paul and I were just having a great time. I don’t really know how else to explain how happy we felt, and how much we were enjoying ourselves. We have gotten to know a couple of people through union activities now so we kept bumping into people to talk to, which was obviously quite nice.

Inside the actual union building, where the main ball was being held, looked so pretty, with hanging curtains, a floral entrance, etc. Paul and I had lots of fun chatting to friends, getting an air tattoo (which we of course sent a picture to P’s mum, pretending it was a real one- sorry!), and taking silly pictures with the Alice in Wonderland props. We managed to meet up with some friends from Church, friends from high school, and our other friends we’ve had since we lived with them in first year. In fact, we bumped into an old flat mate and managed to have a picture with all the original residents of A2, minus one, which felt like quite a poetic end to all of their degrees.

The residents of flat A2 reunited (minus Lyndy-lou)

By the time it was getting to 11pm, the rooms had started to fill up and it was becoming impossible to move the wheelchair around. I guess that’s why I shouldn’t go to clubs, it’s just crazy hard to get through a crowd. And then, as if out of nowhere, my magic ran out and exhaustion hit. It happens like that sometimes, often when I’m in an excitable situation, the tiredness and pain just come out of nowhere and hit like a grenade. So, off this Cinderella went, home by midnight, to fall into bed, and deal with the consequences of doing something so energetic the next day…

Love Katie x

 


Just a few of the letters I need to reply to!

By the time you read this I probably won’t have internet connection at home anymore so no more Netflix, much of my entertainment when I’m in bed will have been removed. I can see the positive side to this though, it will give me more of a chance to work on my writing outside of blog posts, encourage me to spend more time reading, and spend more time with God. I’m not naive enough to think simply removing a distraction won’t result in my finding another but I plan to work hard on being disciplined enough to begin spending more time on these activities. I have been planning to cut down on my computer and internet use anyway, having to end a contract works well.

Another thing I’ve been meaning to do is get better at is letter writing. I have been neglecting my Post Crossing account (read about this here) since I’ve been writing this blog. And, one of the positive outcomes of this blog has been getting new pen pals (yay!). On a reader’s recommendation I joined the Letter Writers Alliance so I’m excited about all this new membership will open up for me.

I love the internet, and one of my favourite things about blogging is “meeting new people” through the comments box and Twitter (you can tweet me by clicking on the feed is the right hand panel). Writing letters feels like an even more intimate way to do that and there is the pure joy of getting handwritten letters in the mail.

The LWA mission statement reads:

In this era of instantaneous communication, a handwritten letter is a rare and wonderous item. The Letter Writers Alliance is dedicated to preserving this art form; neither long lines, nor late deliveries, nor increasing postal rates will keep us from our mission.

That’s why as much as I love the internet, I still have a special place in my heart for letter writing.I think you share more through a letter. I am particularly excited at being able to socialise in this way. I am a very sociable person but my illness clearly limits that. Thanks to Post Crossing I now have a new friend in America. 

I’m hoping my body will cooperate with my plan to write spend more time writing letters and postcards. As my medication is being increased at the moment, I am beginning to get more time in the day to use my hands, so things are looking a little better.

Love Katie x


Seven words I’ve come to hate. When you’re sick, it’s then you come to realise the people who really prioritise you. The people who no matter how busy they are, find the time. And, you become aware of just what the flip side of a cancellation feels like.

Before I go on, I want to write a disclaimer, this post is not meant to be a passive aggressive dig at anyone. I don’t want anyone who personally knows me to read this, thinking it is an attempt to guilt trip them.

Making funny faces when my best friend Non came to visit

It’s easy to become bitter at everyone who cancels visits and even more so at the ones that never plan a visit or even text. Especially because, for me, like most people, when someone is coming visit I plan my energy accordingly and a visit is the highlight of my day, maybe even that week, I get so excited and look forward to it so much. For that person, it’s just one little thing they had to cancel, for me, it feels like they’ve cancelled my birthday party. When someone does actually come to visit, for them it’s just an hour or two, for me, it means more than I can currently make my brain think to express.

I’ve come to develop a kind of desperation for people to come visit. I feel like a clingy girlfriend, trying to act hard to get, but actually waiting by the phone, willing it to ring. I have one friend who has come for coffee on a regular basis since I’ve gotten really ill again, but she went home for the summer yesterday. And now, I feel like I’m looking at a long empty couple of months until September.

I tried to avoid feeling like this when I got ill this time. To not get tearful when I think about stuff like this, but it’s like fighting against the tide. I was hesitant to write this blog post because I’ve tried to explain this enough times to know what follows is a semi-patronising speech about how easy it is to become self-involved when you’re sick, and that it’s nothing personal when people cancel or utter the dreaded seven words but never actually get in touch, because it’s just that people have their own lives and are busy. As if having been stuck at home in bed so many times in the last 7 years, I wouldn’t have worked this out.

I completely understand that people have jobs, families, other friends, I’m not that out of touch with the real world. I wouldn’t expect to be anyone’s top priority, except Paul’s, but we all make priority choices on how to spend our time. There are many reasons why I wouldn’t make the priority list, but no matter how you slice it, the hard truth is, sick people never make the list. I’m the last person people catch up with because they don’t have to sync their diaries with me, I’m always in the same place- my bed. Being the last person to see means I’m usually the one to be cancelled on. I’m always free another time. And, let’s face it. What do people get out of seeing me? It’s not like people come to visit because they need to discuss something or make plans.

The women in my Church gave me ’7 Days of Loving’ which culminated in this amazing bunch of flowers on the 8th day. It succeeded in making me feel so loved and special. I wish every sick person could get this from their friends.

Some of you may see this post as somewhat negative, perhaps the ramblings of a depressed person having a bad day. I wish that were true, not necessarily for myself, but because I know there are thousands of sick people who are desperately lonely because of the fact that people don’t prioritise visiting them. Their self-esteem is on the floor because their friends don’t call, like they always say they will, their family always promise they’ll come visit, just as soon as that busy thing is out the way, but the calendar remains empty. I’ve been in bed for months now, but aside from the friend mentioned above, I’ve only had one visit each from three friends. In fact even my best friend, who lives in Kent has managed to visit more than my friends who live in the same city as me. The big exception to the rule this time was the amazing ’7 days of loving’ I had from the women at my Church. I appreciated that so much, and it made me feel so special and entertained (most days had an activity), I know how very lucky I was to have got that, but it hasn’t stopped my loneliness. I don’t want to sound ungrateful in this post, but, that week is the exception, rather than the rule. I’m not writing this post to air my grievances (I wouldn’t do it this way), like I’ve already said a million times, I’m giving a real representation of what it is like to live with a chronic illness. I can’t profess to do that without tackling the big issues, even if they offend some people.

It’s actually because of how lonely I was when I was first ill with M.E. that I started writing letters. My parents still had to work so I didn’t see anyone all day. My mum started making me buy my own stamps because it was costing her a fortune. It’s not like I had tons of news to write, I just had no other way to communicate with anyone. Those days were really long. It pains me so much to know there are thousands of people whose highlight of the day is getting the mail.Before they got sick, each of these people had a life with friends and work colleagues. I always used to wonder why my dad didn’t have any friends, but when I got sick I understood. They disappeared when he got sick, and all he had was our family.

To those of you struggling with an illness, you’re not lonely because it’s your own fault. Your calendar isn’t empty because you’re boring, it’s because we live in a world in which people get caught up in their own bubbles. Keep your chin up, at least we have the internet now. I won’t stay quiet about this, I’m writing this post to expose the uncomfortable truth to your friends and family.

To everyone else, please don’t ever use the seven words in the title of this post. If you’re not a good enough friend to that person to actually commit to visiting them, then stay quiet, it is better to do that. Trust me. If you have a family member or a friend who is sick who you do really care about then make the time to see them. You cannot be so busy that you don’t have an hour. If you really can’t visit, use your phone, write a letter. Just show them that you would actually prioritise them, even if it means cancelling a coffee with someone else you’ve seen recently, or not watching a TV show. They’ll be surprised you found an hour in a couple of months because you’ll be rare, maybe even unique.

I’m not bitter, I’m trying to make a change, so that one day those seven words won’t be uttered without being acted on. I know that this post will knock some people’s noses out of joint, maybe I’ll even lose some friends, but I really am just telling the truth.

Love Katie x

p.s. I’d love to hear your stories below.



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