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Yesterday was an exhausting but wonderful day. I’ve said (or written) before on here that sometimes I do things that are far beyond what I know my body can manage, but I do them because it’s worth the pain and exhaustion during and after the event. Yesterday afternoon is a prime example. Back in the summer I purchased a voucher from Living Social for me and my best friend, R (remember her from this post?), to have a makeover and photo shoot at a studio in Cardiff.

R lives all the way in Kent so even though her birthday is in November, yesterday was the first opportunity we had to go to the studio. There was a point back in November when I thought I’d ballsed it up and that we wouldn’t be able to go at all. It was mid-Nanowrimo and I was feeling really sick, and basically I forgot to book before my voucher ran out. Thankfully, when Paul rang, the lady at Revolve was really understanding and let us book anyway. Phew.

Source: Google images

Source: Google images

As usual on an important day, my body decided to have a bad day so things didn’t go to plan yesterday. Despite resting the day before and going to bed at a reasonable time, I woke up yesterday morning feeling like I’d run three marathons the day before. I was utterly exhausted. We needed to be at the studio by 1pm and I wasn’t able to get out of bed until 12pm. Not a great start, but thanks to a higher than usual dose of painkillers and a cup of coffee that closely resembled oil, I was at least able to move quite quickly when I did get out of bed. Unfortunately, as I was on a huge high, I couldn’t think straight so I was still darting around the house like a mad thing when R arrived.

I’ve realised lately how important it is for me to eat regularly. I probably should have reached this conclusion much sooner, but it’s become apparent just how much worse I feel when I am late eating any of my three meals or skip one. I lose my appetite quite easily when I feel sick (hard to believe when you see the size of me I know) but now I make sure I eat at least a little something wholesome for breakfast and lunch each day. It wasn’t a good plan then for me to skip lunch yesterday because I didn’t have time to eat. It also meant that when we arrived home later after the photo shoot that I pigged out on high sugar and fat snacks like biscuits. Naughty naughty. This is a bad idea for anyone, but when your body puts on a stone at the sight of ice cream, it’s a really bad idea. I can add yesterday to the long list of examples which have taught me to plan ahead better so that even if I can’t think laterally Paul knows what I need and when.

Despite all of the things that went wrong, R and I arrived at the studio and, as it always does, everything worked out fine. Better than fine actually, a brilliant afternoon was had by all. I love make up but I don’t often have the energy to spend time doing it, so I love it when someone else is doing it for me. A professional make up artist choosing from their array of expensive make up is a great treat for me. Of course I love having my hair done too. I can’t lift my arms without being in a lot of pain so even if I knew how to style a beehive, I wouldn’t be able to, so any opportunity I get for someone to style my hair like that, I jump at the chance. The three times I’ve had a hairdresser style my hair into a beehive, whenever I’ve been asked how high to take it, without a second thought I answer, “as high as you can.”

Not only were all of the staff lovely and paid us compliments (never a bad thing, flattery goes a long way), the studio were really good at helping me manage my disability. Paul had told them beforehand I was disabled, but hadn’t gone into any details. The photographer picked up on what I could and couldn’t manage though by how easily I walked (using my stick and R’s arm) and made sure all the photos that included me didn’t contain any difficult poses. This was a huge improvement since the last time I was at the studio. When I went to the same studio with my sister two years before, the photographer had me sitting on the floor, doing poses that required balance, etc, even though I’d explained to her my illness. At the time I went along with it because I never want to say, “no that hurts too much.” This time, however, the only time I was standing in a photo was when I was leaning against a wall. The rest of the time I was sitting on some kind of prop or chair, but R had photos lying on the floor, and other types of poses I would have struggled with. The fact that I didn’t need to mention my illness the whole afternoon made the time so much more enjoyable. I’d never expect someone to be that aware of what I can and can’t manage, but it certainly is nice when it does happen.

Source: Google images

Source: Google images

The best bit of the afternoon though was seeing how gorgeous R looked. She is having a difficult time at the moment and definitely deserves some pampering. She is one of, if not the, most beautiful women I know. When she was having her photos taken, she actually reminded me of a model or a film star.

The hardest part was when it came to choosing our shots. R looked so wonderful in all of hers that I wanted to buy them all for her, of course monetarily, that would have meant not paying rent. I have to admit, I didn’t feel great about myself looking at the photos of me, but I wasn’t too upset since the afternoon was about giving R a great birthday treat and not about boosting my self esteem. In the end, we were able to come away with four lovely shots though, which we were both happy with. I can’t wait to put copies of the photos into frames so that I can re-live the memory of that afternoon many times over.

So, what do you think of the photos?

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Love Katie x


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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


Driving home for the first time on my new scooter

So something very exciting happened this week…I got a mobility scooter! Last Sunday, on the way home from Church my wheelchair broke. Since we had the money to get a scooter, we took it as a hint to hurry up and spend it. We had been praying for the provision of a scooter, which God did provided (prayer works!) so why wait around? I took Monday off from university to go look for one.

As a side note-We found out from the internet that there are two mobility shops in Canton, which is on the other end of the city from us. We do have a spare wheelchair but the core piece which secures the chair is broken so it’s not very reliable and we were worried it might break if we tried to go so far in it. We contact two of our friends who had cars but they weren’t able to help us out so P and I put a request out on Facebook and Twitter, and I prayed once again. Within ten minutes, someone we know from school offered to help us out. I was completely taken aback because I barely know this person.  I was astonished that someone would go so far out of their way to help us out. This girl is so sweet and kind. After dropping us off, she offered to come back and pick us up if we needed it. Incredible. Not only did this girl help us out, but it also made P and I feel less alone, that when we ask for help, there are people who care.

Anyway, on with the story. When I was “driving” my new scooter home, I just couldn’t believe that I finally had one. For around three years, I have had to be dependent on someone else and now I have my independence back! It feels so incredible. My mind continually races with thoughts about all the things I can do again now.

It’s quite overwhelming, but in a good way. It’s up to me again now to decide when I need to rest and when I should go out. When I commit to do something, I am just committing myself, and not Paul as well, which is great for both of us.

One of the things we discussed in marriage prep lessons was having more individual lives again. We spend nearly all our time together, which we love, but we know it’s also very important for us to have separate lives. Particularly for Paul, he doesn’t spend much time doing something that doesn’t involve either caring for me or for someone else as part of his job, and I think it would be great for him if he started hanging out with guys on his own and did things just for his enjoyment.

Watch this space.

Love Katie x

Zoooooooooom!

p.s. Just in case you don’t follow me on Twitter and were wondering. Unfortunately I didn’t win the Cosmo Lifestyle Blog Award. Big thanks to all of those of you who voted for me and gave me support. I hope you’re not too disappointed in me.


 

Here’s me at second mummy’s house all ready for the wedding

I don’t usually post on a Sunday but I wasn’t able to post yesterday because I was at a family wedding. I’ll write more about how I managed the day soon, but for now I’d just thought I’d share the picture with you. Still in my pjs, recovering, but managed to get some weddingy things done online so the day isn’t a total loss. We’re at second mummy’s house so I don’t want to sit on the computer but enjoy sometime with my soon-to-be little sisters. Enjoy the rest of your Sunday. 

Love Katie x

 

 


I’ve been thinking about how great a day I’ve had at Oakwood in my long periods in bed. Yes, I’m paying for my weekend of fun now, and I had to take a much higher dose of painkillers than I’m supposed to, to be able to do it, but, some days are just worth it. Sometimes occasions are just worth all of the pain, in order to not miss out. P has been wanting to go to Oakwood for literally years, I wasn’t going to let this opportunity pass by.

 My ability to go to Oakwood and enjoy the day was made so much easier by the fact that Oakwood had already made provisions for disabled people, and not just those they have to by law. It was great that I had access to all the rides, although I felt guilty about skipping the queues. It’s frustrating enough that there are lots of places I can’t go because it isn’t possible to make them accessible, so I’m thankful that there are laws that require those places which could be accessible, to be so. I find it infuriating when I could easily have access to somewhere (for example a restaurant or a shop) if minor adjustments, such as a small ramp, were made, but I can’t because those provisions aren’t made.

It sometimes feels like everywhere I go there are problems. When I first had to start using a wheelchair I felt like such an inconvenience, living a normal day life was suddenly full of all these obstacles. All at once your eyes are opened to these problems all around you, these tiny little problems that all mount up. No drop curve, people won’t move for you to pass, a display stand in the aisle makes it impossible for you to pass, a step into a shop, the disabled access door is broken and hasn’t been fixed, the lift is full of people who don’t want to take the escalator located a few metres away. All of those things happen every time I go into the city centre. I realise that I am so lucky to have P there with me. It’d be impossible on my own. P and I have had to develop a lot of patience.

It was quite a treat then to have access to everywhere on day at Oakwood.

Love Katie x


I am feeling the happy kind of exhaustion as I write this, the kind of exhaustion which is a result of having had a great weekend. On Saturday night my best friend R had a garden party. P and I stayed with her and travelled to the coastal village of Broad Haven (one of my favourite places) the next day to stay with R’s nana. We had a nice roast dinner with her and were very close to the theme park, Oakwood, for our day trip on Monday. Busy, busy, busy, but I broke it up by rest breaks and naps.

Eating lunch at Oakwood

I really enjoyed the whole weekend, but there was one common theme which ran through the whole 3 days- no matter how much provision I put in place, my body has its own agenda, which everyone comes made subject to. On Saturday, I left the whole day to rest ready for the party in the evening. Admittedly, I woke up quite late, having had a rough night, but I thought I still had plenty of time to get everything done, which I needed to. I was very wrong. I worked so very slowly, each task taking much longer than necessary. This meant that we were over two hours late to the party, and arrived with me looking like death on wheels.

I won’t bore you with details of all of the delays caused by my body. The short version is that I struggled to sustain being chatty and energetic all weekend and fell asleep at every possible opportunity. Most 21-year olds aren’t used to having to take rest stops on a 45 minutes journey, but P and his friends had to.

Worst of all was my neediness this morning. Everything was going to plan for this weekend with regards to pacing myself, avoiding pelvic pain and muscle pain. I seemed to be dealing with the weekend away. If you sense there’s a ‘but’ coming then you’re not wrong. I woke up from a nap Sunday evening to find half of my face bright red, itchy and very hot. I tried all sorts of remedies, but when the infallible aloe vera didn’t work , I knew that wasn’t dealing with eczema or sunburn. The next morning, it had begun to spread a little so I rang my all-knowing daddy, who gave me the correct solution of taking an anti-histamine.

Pretty ladies at the party on Saturday night

 

 When my rash began to improve, we thought we might finally make our way out, and then the next problem struck. I had taken a load of painkillers in the hope that I would be able to deal with all the pain and discomfort the day might bring. I know it’s not the best plan, but it’s the only option I have if I want to get anywhere. I thought I’d cleverly pre-empted my body, however, in all the fuss about my face, I’d forgotten to eat breakfast. My pupils shrunk to a size smaller than dots on a dice (not exaggeration) and I felt too nauseated to stand up, let alone brave a car journey. After waiting for my breakfast to settle, we finally set off half an hour later than planned, but had to see the pharmacist, who of course had a long queue. By the time I finally got out of the pharmacy, I wanted to cry because I felt so bad about holding all my friends up so much. I bet they were all regretting allowing me to come.

I know it’s not a particularly exciting story, but I couldn’t think of another way to demonstrate how unpredictable my body is. I always think I’ve prepared for every eventuality and then it throws something new into the mix. I used to pride myself on being on time, and hated it when people were late, and now I’m more flakey than anyone I know, always late or cancelling with the same excuse- I wasn’t feeling very well.

Love Katie x


Me and R looking sexy back in 2010

I know in my last post I almost sounded annoyed that I had so many opportunities to fill my diary, but it’s frustration, not annoyance that I am feeling. I can’t help feeling disappointed that if I wasn’t sick I could handle going to the cinema two days in a row and be able to do revision. Instead, I am thinking of what I can cancel next week so I can have more than one day in between activities, because I know that a morning off just simply isn’t enough for my body to recover. Right now I should be at my best friend, R’s house, helping her get ready for the party, like she would be doing for me. Instead I’m about to take my last dose of painkillers today and my legs still feel like lead. The staircase in this house is Everest for me. It sounds so pathetic. Not least when my dad comes in after a hard day’s manual labour and I have done nothing but lie in bed.

 

Despite the stairs, I’m still really enjoying being at home, it does feel like a holiday. I’m not sure where to start in talking about all of the fun things we’ve been doing. Since I’ve already mentioned her, I’ll talk about how much I love being able to see R so often. When we both still lived at home, during our school days, we were practically inseparable. I’ve missed that. She’s an amazing friend, who writes diligently to me, even when I can’t reply, and comes to visit as often as possible, but there’s nothing quite like being able to see her nearly every day. I am so comfortable around her, even when I’m having a bad day, she’s one of the few people who I don’t find it draining to be around. She’s content to sit in bed with me and watch DVDs or play games. Even better, she doesn’t blink an eyelash when I get stuck in the bathroom because of my pelvic pain or need to leave her alone for a bit with P while I have a nap.

 

Patsy lighting a cigarette off the Olympic torch
Source: Google images

Yesterday she was kind enough to come out of her way to pick P and I up to go the cinema. P had been pining to see the new Batman film on the day it came out, but it was obvious I wouldn’t be well enough to get the buses, just in case we got stranded for hours. And, my mum could neither afford nor want to see the film. I promised we’d go as soon as possible, so when R invited her to come with us, we jumped at the opportunity. The film was well worth hurting our bank balance for- I haven’t enjoyed a film that much since Inception. P and I are big Marvel film fans, and the Dark Knight films have been so good.

 

Since I haven’t been able to visit R while she’s been in university (because I can’t manage the journey), I was really pleased at being able to spend time with a friend she has staying. Her friend, as expected, was really nice, and I think wasn’t phased by the way P and I speak with R. I’m glad about that since all four of us are going to be spending this weekend together.

 

 I feel like R and I have a special relationship really. I don’t think everyone has a friendship quite like ours, mainly because there are few people who would be as a good a friend to me as R is.

 

Any other spoonies have great friends they want to talk about?

 

Love Katie x

P.s The title is a reference to Absolutely Fabulous


As my regular readers know, I’ve moved home to my parents’ house for the summer to save money, get some rest, and give Paul some help with caring for me, while I’m needing so much care. Well, so far only one of those aims is being achieved, my mummy, bless her, has been running around after me all day, especially since my bedroom is upstairs and I’m really struggling with the stairs.

 

My school friends are home, and since I never usually manage to see them, I’m trying to catch them all before they return to the various parts of the country, and so my diary cannot fit everything in. I’ve already run myself raged, and in doing so, P and I, while having a great time, have spent the same, if not more, than we usually would living in Cardiff.

 

That’s part of the reason this post is coming so late in the day. When I got home from the cinema last night, I got into pelvic pain and had to go to bed. It was a bit embarrassing because the friend I went with had a guest, but I just have to get past that. I started reading to take my mind off the pain and was asleep within a couple of minutes. I slept straight through until 11pmish when I woke up in terrible pain. Despite taking painkillers and rubbing a lot of Tiger Balm on my legs, my muscles were hurting so bad I wanted to scream. A long story short, I was awake until past 4am. I still feel rough this today but I needed to get a lot done so I had to get straight out of bed.

 

One of the main problems for me at the moment is that my parents don’t have wi-fi. While, clearly, wi-fi is a luxury, it’s causing me problems in keeping up with wedding plans and this blog in particular. Getting downstairs is painful, getting upstairs feels impossible. I do manage to do it, most of the time, with a walking stick, but it takes so long and is very painful. That means that I can’t get online until I’m well enough to get out of bed and my legs are good enough to bend to sit in a chair. I’m trying to work out a routine but because P and I have planned so many things, it’s proved very difficult.

 

My resolution then, is that after this weekend, I will start cancelling more activities (especially if they cost a lot of money), begin a to-do list to get through and get myself into a routine.

 

Wish me luck, I’m off to update the wedding website!

 

Love Katie x

P.s. I shall be eternally grateful to anyone who votes for me in the Cosmo blog awards, and send kisses to those who ask their friends to do the same.

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*Today’s blog continues on from yesterday’s theme.

Persuaded P to take a photo of me today

Beau and I had a picnic at the Castle again today, which in some ways was even nicer than the one we had yesterday. I definitely felt more relaxed and even had a lie-down so we didn’t need to leave so quickly. We spent some of the time discussing ideas and plans for the summer holidays. At the moment, P hasn’t been able to find suitable work so we will probably move home to my parents house for July and parts of August and September, in order to save money. We both get pretty bored without anything to be working for or doing something. Last summer we became tourists in our own city and did all the things we’ve been meaning to do since we moved to Cardiff. I wrote a blog post about it here.

I can’t wait to hang out with this pusscat when I get home

Before our wedding (and hopefully honeymoon) we still have two and half months to fill with memories. Alongside studying for our exams, we plan to do as many free or low cost activities as we can. For example, we love camping so we’re planning to do that as much as we can, where ever we can, whatever the weather. Maybe we’ll only manage as far as the end of the garden, but I’m confident we’ll still have fun, at least it’s not in bed! We’ve got friends we’re hoping to visit, and articles, books, etc that we need to write. In fact, this may seem silly, perhaps P won’t thank me for writing this here, but we’re kind of viewing the move home as a bit of a holiday. We’ll (or should I say Paul) still be helping out with chores and be in my parent’s home but it’s away from the bed I’ve been stuck in for months, a change of scenery. Plus, it’s in the countryside so plenty of places to picnic, BBQ, and explore. And, best of all, we’ll get to spend time with our families.

I have been inspired by the new Wispa advert, which I know I shouldn’t admit. Essentially, it has very little to do with chocolate, but has the slogan

Time well mis-spent

and in one part says,

the kind of things they don’t hand medals out for, but really, really should.

These words really resonate with me. I may not be able to do anything worthy of recognition, but I can do plenty of things which should. Things like keeping the art of letter writing alive. It’s just little things really, but being ill has really made me come to appreciate the little things. As I recently replied to a commenter on this blog, yes, in one sense, we have a right to have a chip on our shoulder because of all the things we’ve had to miss out on, or we can accept that we were meant to have a different life. A different life but not a less fulfilling life.

Love Katie x

P.s. Any disabled readers have advice for traveling abroad?



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