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While I’ve been stuck in bed the past few months, I’ve spent a lot of time on the internet, reading blogs, watching YouTube and finding interesting people on Twitter. It’s struck me in the past week or so how many of the spoonies I “follow” online manage to achieve a lot, in spite of their illness. In some cases, they’ve used their illness to their advantage. As thoughts about this were swirling around my mind one night, I pondered how these women manage to do so much, when I seem to do so little. Was it because they weren’t as sick as me? Possibly, but that’s not the whole story. After much deliberation, I decided it was because they weren’t afraid to admit they had dreams and begin taking baby steps towards achieving them.

Failing yet again

When this academic year began, I had set my mind to focus on getting through my studies, it’s no surprise then that I fell into a depression when I got so sick again. Seeing weeks go by without my being able to study has been really difficult. I love learning, since I can remember, all I’ve wanted to do was go to university, and I love learning about politics. In a way, having tried so hard for so long to get through my degree only to keep “failing” at completing modules has just made me afraid to try anything else. I wouldn’t admit it out loud but my subconscious was saying, “why bother trying to do something you love? Your illness will only ruin it anyway.” I’ve been making plans but the majority of them have begun with the sentence, “when I’m well enough…”, which just isn’t happening.

Don’t misunderstand me, I haven’t given up on university, I will find a way to complete my degree, and I certainly haven’t given up the belief that I’ll get better, but I’m done waiting around for life to begin. That’s how Paul and I have felt, we’ve pushed ourselves to complete things, and life itself has been a real struggle for a long time, but when it comes to deepest desires, the things that mean the most to us, we’ve popped them on a shelf for “one day”. In a way, that’s allowing my illness to control us, the fear that we might only get one chance and that my illness will blow it for us, has prevented us from doing some things. There’s a certain amount of wisdom in that, but there’s been a lot of fear in that too.

Vintage pocket watch with open lid and chain on wooden surface

Making changes

This week we took the plunge and used some of our savings to book a holiday. The idea that we need to save for a rainy day has always been on our minds, and while that is generally a good principle to have, it’s made us afraid to spend any of our savings. Since we first became a couple and I got sick, we’ve been talking about going to Paris, and therefore, we’ve never wanted to spend our money on going anywhere else, because what if we can never save enough to go? Paris will still be there in future years when it is the right time for us to go, and I’m not going to believe that we’ll never get to go there if we go on holiday somewhere else. We know that we both need a holiday and we’d love to have a belated honeymoon. After all, lots of people generously gave us Euros at our wedding for that purpose. As we were chatting away about this, we both came to the realisation that although we’d love to go to a city and have an adventure, we’re both exhausted and what we really need is some time away somewhere hot, with a pool, and a beach. That’s what we did. We’ve booked a last minute holiday to Gran Canaria for a week. The fear that I felt when I clicked the little button to pay online was ridiculous, which made me all the more certain I was doing the right thing. It’s not like we’ve spent all of our savings on a crazy extravagant holiday that I obviously can’t manage. We booked something nice, albeit the cheapest place we could book, with disabled access. I don’t think I need to say any more to prove quite how unfounded my fears are.

Maspalomas, Gran Canaria

Having bitten the bullet on spending savings on a holiday, I’m determined to keep making progress on my dreams. I think putting all my eggs into the university basket was a mistake, and not one I’m going to repeat. What’s most important though is that I stop making my own contingency plans and start seeking God’s plan for my life. It might not be the most comfortable life, but I know it will be the most fulfilling life. Right now Paul and I are praying into our future and asking God where He wants us to step out in faith. Watch this space for more exciting adventures.

Love Katie x


Life’s all about moments of impact and how they changes our lives forever.
But what if one day you could no longer remember any of them?

 Yesterday I re-watched The Vow, a film about a woman who suffers from anaemia after a car accidents, and her husband’s fight to get her to fall in love with him all over him again. When I saw the film in the cinema, I must admit I cried, the story is so heart-wrenching. Imagine my horror then when I realised that the film was based on a true story.

I know it’s pretty cliché to write a blog post about a film, but I think we can make an exception because a) I watch a lot of films so it was bound to happen at some point and b) because this film was based on a true story. Something about this film deeply disturbed me. The thought that I could wake up any day and lose Paul or any of my loved ones is a very sobering one. I know this idea is thrown around a lot, but when you actually stop and think about it, it changes the way you act. It means that I actually take thirty seconds to give my husband a proper goodbye, and I never want to sleep on my anger. It feels like I’ve heard a lot of stories of tragedy lately, it’s easy to let those things roll off my back, safe in the certainty something like that would never happen to me.

The other thing that stopped me in my tracks about this film was thinking about how you manage to come to terms with such a tragedy. Not even just come to terms with it, but to actually find the strength day in, day out to fight for your marriage. That is real love. I got the answer to my questions when I looked up the book. The couple managed to get through such a tough trial through their faith in God.

If you haven’t guessed already, I am on my way to Amazon to order the book. As a newly wed I am always on the lookout for couples whose faith has strengthened their marriage, especially in times of trials and suffering. Expect more posts…

Love Katie x

 

The Vow (DVD + UV Copy) [2012]

The Vow  [Paperback]

The Vow: The True Events that Inspired the Movie  [Kindle]


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I have decided to do something this November that I have been wanting to do for years. I have finally decided to take the plunge and do NaNoWriMo. If you’re not a writer you’re probably thinking I accidentally sat on my keyboard or if you’re English, you probably think that’s a Welsh word. Both are wrong, NaNoWriMo is an abbreviation of National Novel Writing Month. It began in America so is now actually international, but aside from that, the title is pretty self-explanatory. For the month of November, people pledge to write an entire novel (defined as 50,000 words). Most people try to write 2,000 words so that they have a little bit of manoeuvre room.

Whenever I think about what I am really about to attempt, I begin to wonder how the heck I am going to manage it, but I am absolutely determined to do this. I used to write everyday simply because I love it, and although I am still writing non-fiction regularly for this blog and my column, I really miss writing fiction. I just can’t seem to find the motivation for fiction anymore. As NaNoWriMo founder Chris Baty writes in No Plot? No Problem!,’the biggest thing separating people from their artistic ambitions is not a lack of talent. It’s the lack of a deadline.’ I don’t think my novel will be amazing, in fact most participators never actually read the novel they wrote. The reason I am doing this challenge is because I need to prove to myself that I can actually write everyday and produce a novel on a deadline, i.e. that I might actually have what it takes to be a writer.

I am not going to this blind-sided. I am making some preparations, I don’t just mean as in planning my novel and working on characters. I am reading Chris Baty’s book which I mentioned, reading lots of articles online and watching the NaNoWriMo youTube videos. I am planning to split my 2,000 daily words into either three or four writing sessions. I did a quick time check yesterday and it should take me about 15-20 minutes to write five hundred words, although this obviously depends on how well I get into the writing flow. Yes writer’s flow an actual thing, no matter how cheesy it sounds. I am hoping that by 9.30am each day I should have at least five hundred words down.

One of the great things about being in university is that I can also be apart of the NaNoWriMo group. I can make friends and get motivation and support. No one wants to be the first one in the group to quit…

I know this is still going to be a huge challenge but this is something I really want to achieve. I keep picturing how I will feel come the 1st December when despite my tiredness I will have written my first novel. I was talking to Paul earlier about what my undertaking this challenge will mean for him, and I realised quite how much I want to do this. If I end up giving up, you can expect one very unhappy post from me. So the less posts you see from me for the next month, the better you know my novel will be going. I’m off to make a visual board for my novel!

Love Katie x

Are any of you thinking of doing Nanowrimo too?


At the beginning of the trail you had to take a photo of yourself to identify your film, this is a copy of mine and Paul’s. Sorry the quality isn’t great.

When Paul and I returned home from honeymoon, there was one over-riding thing I was certain I wanted to do- lots and lots of new things. While stuck on the sofa during that week and a half I had a lot of time to think, and I knew that this year I wanted us not to just do the same things we did the year before. While we absolutely loved and got so much out of our cinema membership, that time has passed now. We still love going to the cinema but we don’t have the time (and I don’t have the energy) to go as often as we used to, and we’d rather do something more sociable these days.

The societies fair seemed a great place to start in finding a new hobby, we found the perfect match in the photography society. We have a good digital camera but we don’t have a swanky SLR and I doubt either of us will become photographers (although you never know), but it is something we can do together and have fun. We would both enjoy learning more about photography and developing new skills, especially when it comes to using the darkroom so we both joined up. So far we’ve thoroughly enjoyed all of the meetings/activities.

A fortnight ago we did a photo trail which involved using a disposable camera to take photos on seven themes. Once the photos were developed, they were judged and prizes handed out for the best in each theme. We decided to work on one camera together because we thought it would be easiest and make it more of a joint activity. P and I really enjoyed trekking around town, finding ways to creatively interpret the themes. We both said we would love to do it again, and it really opened up our mind to think about taking more creative photos. I’m seeing opportunities everywhere now.

It was such a beautiful day to take photos. This is just a quick snap I took of Cardiff Castle on my phone but the sky looks so blue in it.

We got our photos back last weekend, and unfortunately a lot of them didn’t come out (bad flash) but the ones which did come out we were quite proud of. On the day P was content to just come up with ideas and let me do all the photo taking, but I managed to persuade him to take a couple. The day of the social and prize-giving P wasn’t feeling too good at all, so it was doubly good when he came first in one of the categories. It was great that we worked together on the photos and shared ideas, but it was a big confidence boost for him that it was his photo which actually won. Of course he tried to share the credit (and the prize) with me because he’s always so kind, but I think the glory belongs to him and I am very proud of him. Needless to say that brought a smile to his face.

Even though the photo trail wasn’t an official date afternoon, it was probably the best afternoon we’ve spent together since we’ve been back home as newly weds. We’re building memories together as a couple, learning new skills, and making new friends. What more can a girl ask for from a society?

I’m curious to hear of the best dates you’ve been on, whether with friends or a partner. Please share with me via twitter (@Chronic_Katie) or in the comments box below.

Love Katie x


 

Whenever I am feeling a little blue, one of the things that never fails to cheer me up is The Pig of Happiness by Edward Monkton. There is a book, but you can also watch a video of it. Check it out below.

Hope that brings a smile to your face too. Have a great day!

Love Katie x

 


I recently saw the above picture on one on my favourite blogs- Victoria Writes- and it, along with Victoria’s post struck with a chord with me. To say my posts on here have been sparse would be a gross overstatement, due to the fact that I haven’t felt up to writing. In a lot of ways, my health has improved since I began this blog, at least I’m able to leave the house a lot. In other areas, such as my concentration, the amount I’m sleeping, and my ability to study/write has remained the same or declined. I have half written many blog posts and stories in my mind, but whenever I have tried to put pen to paper or finger to keyboard, my energy has just felt too sapped. I am still spending all my time in bed when I am at home. Unlike before, I haven’t been able to read or write barely at all though. Thinking that it was just some of kind of mental block, I resolved to write through it a couple of days ago. I forced out words onto the page of my journal, but only managed a couple of sentences before I needed to sleep. Even now, the words feel forced, incoherent and unflowing, but hey, I’ve managed a lot more than before!

Anyway, these difficulties have left me very frustrated with this blog. Just as my readership was doing well and I was getting new readers from the Cosmo Blog Awards, I’ve stopped writing. I did begin to wonder whether the blog has run its course, but now I’m reconsidering. Maybe my blog has left the infancy of the days when the blog posts seem to write themselves and now it’s being ushered into a new chapter. A lot will be changing for me in the next couple of weeks- I’ll be resitting my second year, having failed to sit even one exam this summer, and biggest of all I’ll be starting married life! And, there is so much of my life which has been missed out in the last couple of weeks. For instance, you must be wondering how the heck two students, one with severe chronic conditions, plan and pay for a wedding. And, what will our honeymoon look like? Even as I’m writing this post, I’m becoming more convinced that Chronic Katie is far from being over. There is so much more I have to tell about what living with a chronic illness is like, particularly in areas which, to my knowledge, have never been discussed in public- student life in university, the benefits process, roles within marriage, how to be a wife, and even sex. Sometimes the path I have yet to pave seems daunting when I think about all that is ahead, but when I consider the fact that I’ll have God with me, I just get excited for all the opportunities I have ahead of me.

I hope you’ll keep reading to see where this Chronic Katie’s life goes next.

Love Katie x

p.s. The Cosmo Blog Awards voting closes this Friday 31st August. Please, if you enjoy this blog, consider voting for me in the Lifestyle Blog section, and help me spread awareness about life with chronic illness. A huge thank you to those of you who have already voted, whatever the results, I appreciate each and every vote.


Source: Google images

Sometimes God’s timing can be quite comical. Last Wednesday I was watching Julie and Julia and thinking how it gave me some sort of inspiration. Not that I write blog posts about the same topics, or that we began our blogs for the same reason, or even that I think one day my blog will lead me to become a published author. But, in the sense that Julie began her blog for a reason, namely to de-stress herself after work through cooking and give herself something to work towards, and she had no idea that her blog will lead her to become a published author, and then have that book made into a film. I began my blog with the idea of trying to explain how invisible illnesses really affect people, and to raise awareness about conditions like fibromyalgia, and I had no idea how many views I would get (tons more than my other blog) and that readers would send me so much encouragement and so many compliments. I really have been shocked. 

Well I was just thinking all of this as I logged onto WordPress to type up a blog post when I realised that I had been short listed for the Cosmo Lifestyle Blog Award (no I will not shut up about that). Ok, it’s not as massive as what happened to Julie, but to me, it’s getting more people to read my blog than ever before. The timing just gave me a bit of a chuckle.

As if that hasn’t been enough encouragement to my writing, I also received an email to say that my application to be a columnist for my university newspaper has been successful. Again, it’s not as if I’m going to be a columnist for The Times or even like I’m getting paid, but the competition was so fierce that I thought I didn’t have much chance of getting it, especially because I’m hardly the typical student. I am so excited about starting my columns in September. I have wanted to be a columnist for years and years. Even though I am sure this will make many of you cringe, my dream of being a columnist is part of the reason I love Sex and the City so much. Maybe I don’t want to write about sex (scratch the ‘maybe’ from that sentence), and I don’t wear Manolo Blahniks, but I love the idea of writing about life’s little stories that happen everyday.

Right now I’m feeling very positive about my writing. And to think that if I’d never have gotten into this very bad patch of my illness, this blog wouldn’t exist. I always underestimate the rollacoaster life of adventure God has for me. The life of a Christian spoonie is never boring.

Love Katie x


…well I would if sleeping were an Olympic sport.

Daily readers will know that a few weekends ago my mummy came to visit. She came to watch the Olympic tour pass through Cardiff with me, P and my sister, it’s not my daddy’s sort of thing so he stayed at home.

P made me a gold medal when I gave him some leftover clay to play with

I didn’t enter the ticket ballot because even if I could afford the tickets and a trip to London, it would be a massive struggle to handle the trip. With some creativity I have found some ways to get involved. I am inspired by Holidays From Home, a website which sells holidays to those who are bed-ridden. Claire Wade came up with the idea of virtual holidays when she was stuck in bed with M.E.. Holidays From Home are doing a special trip to London this summer but I couldn’t justify spending £30 on it when we’re saving for a honeymoon. Plus I just want to focus on the Olympics really, not a whole visit to London.

So here is my quick guide to a virtual Olympic experience:

The first and most important step to a virtual holiday is preparation. In order to feel like we’re really at the Olympics, P and I are going to decorate our flat with British flags, bunting, etc. I’m going to be searching the internet for ideas over the next coming weeks but we’ll wait until we actually move to our new flat to put everything up – I’ll post some photos when we do.

Next is fun activities, we’re going to invite friends over for championships on games consoles and silly tasks like holding ice in your mouth the longest, and paper tossing. If I can I’ll even make medals. It’ll be like an Olympic party.

Of course, the main event will be watching the games on television. We’re hoping to keep track of the medals we have won (and by we, I mean team GB of course). For me to get excited, I really need to understand what’s going on, so I’m going to read as much as I can about GB’s athletes and begin making a scrapbook. That’s right, a new project. I also want to record interesting and fun facts about the Olympics to put in my scrapbook. This will be a memento for me to keep.

When Claire Wade’s mother took her on a dream trip to Greece, she collected items from friends who had visited there so Claire could imagine she was visiting shops and museums. So lastly, if we can afford it (they’re pretty pricey), P and I are going to buy official souvenirs from the Olympic website as a treat.

I wonder what you’ll be doing to get involved with the Olympics? Any ideas for me and other spoonies*?

Love Katie x

*Spoonies are people suffering from a chronic illness. Look out for a post coming soon explaining where the name came from.

Holidays From Home do lots of other holidays for £19.99, visit their website for more details.


I wanted to start this post by saying a quick thank you to all of you who have shared links to my blog across the internet. the viewings particularly increased in response to Paul’s blog post on Saturday night. it means so much to me to know that this blog is helping to increase awareness about life with a chronic illness, it may be cheeky to ask, but i am cheeky enough to, please continue to share links to my blog posts, even if you already have, and encourage your friends to so the same.

Me and my Mummy Bear

On to business. So, I have not been writing posts for the last few days because I am wiped out by a visit from my mummy. As usual, whenever someone comes to visit (especially my mummy) I can’t seem to stop talking or showing them things. I am like an excited child showing off their Christmas presents. I always end up way overdoing it and needing days of recovery. I am surprised my family even believe I’m sick because I am always so excited and energetic around them. Remember that placebo effect I talked about before? Well it seems to work for a whole day around my mummy.

Usually I’m very tired after a visit but the pain has been extraordinary this time. I made it to church this evening but my legs were hurting so much I had to lie on the floor during the preach, which Paul found hilarious.

It frustrates me greatly that I can’t worship God properly. The church I go to has worship relevant to our time, my mum would say it’s like a rock concert. I want to be jumping up and down, wave my arms in the air, dance and generally get sweaty and out of breath, exactly like I would at a gig, but I’m lucky if I can stand up for one song.

I’m also not able to volunteers on a Sunday at the moment. What I’m most upset about though is Paul and I not becoming leaders. We were apprenticing two leaders in our church to lead a smaller group on Tuesday evenings but because of my health that’s slowed right down, which makes me want to scream. I know that we’re made to lead groups like that, we can feel it in our bones. I’m impatient to start now and my illness getting in the way of that makes me want to scream.

‘Chazown’ is a book about finding God’s vision for your life, there is also a free online course
Source: Google Images

A book I’m reading at the moment really helped me to deal with this. The book is called Chazown, which means ‘vision’ in Hebrew. The author, Craig Groeschel, says that God does two things when we get his vision for our life – (1) work in us; (2) work through us to fulfill that vision. I may be impatient to lead on Tuesday nights but there’s some things I need to get in order to be a good leader. God will use this period of illness to teach me lessons.

And, the second thing that has spoken to me, is that although God didn’t cause me to get ill, He wasn’t taken off guard by this very bad patch. God knows everything so His vision for Paul and I hasn’t been ruined, He would have planned for this couple of months. Groeshel writes that what we may see as set backs, God sees as set ups. Look at Joseph in the Bible. He must have seen being sent to prison for a crime he didn’t commit as a major set back – who wouldn’t? It couldn’t have seemed further from the vision of leadership God had for him, but while in prison he continued to use the gift of interpreting dreams God had given him, instead of wallowing in self pity. The man who was in the cell next to him ended up being a servant to the Pharaoh, who he told about Joseph’s gift. Joseph interpreted Pharaoh’s dream and saved thousands of lives. Had Joseph never been in that cell . . .

Seeing this period of illness through this new perspective, I’m going to take up some advice Paul gave me and make sure I’m the best leader in my church by the time I’m better. I don’t mean to sound all-happy-go-lucky, there is a time for some good old-fashioned sorrow and crying about my situation. Although I have a new perspective, I’m still not exactly pleased about all the pain I’m in and the strain it’s putting on Paul. But, I can either spend the whole time wallowing or get on with the task at hand. I wouldn’t be writing this blog if I’d gone with option number one . . .

Love Katie x

P.s. If you wanted to find out more about Chazown or do the free online course, you can find the website here.


Just a quick housekeeping note, don’t forget you can be notified of new posts by either clicking the ‘follow’ button at the top of this page, or, if you don’t have a WordPress account, but scrolling right down to the bottom of the page and entering your email address.

 

That TV is on pause in the background!

Today I have been able to get out of bed more than usual. When I was younger I gave myself a rule, that I’d eat at the table and have proper conversation, when I had my own house. I was adamant that Paul and  I would get a table when we moved to our flat, and loved having dinner together all (well most) nights, but when as I’ve gotten more and more sick, the more painful it has become to sit and bend my legs, and not have the comfort a bed gives. Paul made a yummy roast dinner for lunch and I was actually able to eat at the table and have a class of wine. Woo hoo. Alcohol does actually help numb the pain so I thought I’d be in a good position for Church this evening.

As usual my body had other plans… I was in really bad pain and couldn’t move or stay awake at about 5pm, and I just didn’t get better by 6pm in time for Church. I hate missing it, Church is the best part of my week. I am glad I can at least catch up with the preach online. Poor Paul always offers to stay with me, but I try to cope without him, so that he can go. I can just about handle it, and he shouldn’t have to miss out. It’s not good for him. He always waits right up until the last minute, just in case I get better in time, and ends up being late, because he feels so guilty about going without me. How wonderful is he?

About 20 minutes after he’d gone, the big doses of painkillers I took kicked in and I was actually able to do some knitting. Like most things involving my hands, I can’t usually do it because of the pain in my hands.

I’m knitting squares to make a blanket

I felt a bit bad about not using this ease in the pain in my hands to work on wedding invitations so I moved onto that after a while. While I was doing all this, I was watching films and episodes of American series on Netflix. Netflix is the sick person’s best friend. At the moment I’m on a free a trial, and boy have I made use of it. A lot of the time, I’m pretty bored not being able to do anything with my hands, or too tired to read, so I watch films, we’ve got a lot of DVDs. It’s a real treat to have access to such a huge library of films and TV so I can watch new things everyday.

“This year things are gonna be different”
I love Peanuts

I love the new diary I got for the next academic year. It seems very fitting, doesn’t it?

Love Katie x

 

Just a note about the way I write my posts: I post everyday at 11.30am but I usually write the posts the day before. At first I wrote as if it were the day the post would be published but I got bored of writing ‘yesterday’. Now I’m just writing away, but I thought it might be confusing to read about my Sunday on a Monday or wonder how I’d lived a whole day before 11.30am.



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