This post was dictated by Katie and then written by Paul.
This is how I look on bad days like this
The last few days have been rather tough. I’ve had several days where I haven’t really been able to function. All I’ve really been doing is watching YouTube videos, sleeping and the odd bit of scrapbooking. I’m not really eating, not getting dressed and am only getting out of bed for the essentials. I’m aware that I’m not painting a very cheerful picture, but since I’m supposed to be raising awareness about my illness, I have to be honest about my experiences.
On a positive note, however, I’ve had some encouraging messages about my blog through social media. On days like I’ve just described, when I feel so frustrated, it’s even more amazing to get messages like that. I love hearing about how much my writing is helping people in a similar position to me. Who wouldn’t?
While I can feel lonely, stuck in bed day after day, these kinds of messages can make me feel connected to the world and remind me that what I go through isn’t for nothing. I am thankful that people take the time to send me messages.
Love Katie x
You can find me on…
- Twitter- chronic_katie
- Tumblr- ChronicallyCraftyKatie
- YouTube- ChronicallyKatieblog
- Instagram- chronickatie
Don’t forget that you’ve only got just over a week to enter into my GIVEAWAY with Bulls On The Case. For all the information you need please click here to view the giveaway page. Remember, that you’ll have to subscribe to the blog and leave a comment to be entered. If you have any problems, just leave a comment or e-mail me at chronicallykatieblog@gmail.com
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Happy ME/CFS & Fibromyalgia awareness day for yesterday!! Wow that wouldn’t fit on a card would it?
Yes that’s right, it’s awareness month all month, but there’s also a day allocated to the particular chronic illnesses I suffer from, to celebrate how much awareness has been raised by this blog I’m having a giveaway! I want to thank all my loyal readers and subscribers who continually encourage and support me, and share links to this blog with their friends so that one day the term ‘yuppie flu’ will fall out of use.
This giveaway is doubly awesome because it’s sponsored by this wonderful lady, Kayley, who herself is a CFS fighter. Despite her illness, Kayley makes the greatest phone cases and has founded her own company, Bulls On The Case. As soon as I saw Kayley’s cases I knew I had to get one for myself, especially because you can have a custom design.
How can you win one of your own?
This giveaway is for one iPhone case.
The winner will get to pick a case in the colour of their choice (yellow, red, mint green, black, white, pink, lilac, baby blue, and blue) and then discuss the design they want with Kayley. You can find more design ideas on the Twitter page.
The case will be shipped internationally, free of charge.
The Rules aka the boring bits
1. You must be a subscriber of this blog** to be entered into the competition. If you are not currently a subscriber, all you need to do is enter your e-mail address in the relevant box on the right hand side column.
2. Then simply post a comment on any of my blog posts, please write a proper comment relating to the post and not just ‘enter me’.
That’s it! If you don’t meet either of the two criteria above then your entry won’t be counted.
You can get a bonus entry by Tweeting a link to this blog and tagging me (@chronic_katie).
You have until the end of this month (31st May 2013) to enter. The winner will be contacted by e-mail and their name posted here. If you are under 18, please get permission from a parent or guardian.
Best of luck!
If you don’t win, don’t fear, you can always buy your own case from Kayley (which I will definitely be doing as soon as I upgrade), prices start from just £6! There will be more giveaways coming soon!!
Love Katie x
Please support Kayley & Bulls On The Case by following her on Twitter, and liking her Facebook page.
*This giveaway is sponsored by Bulls On The Case.
** If you subscribe to this blog through bloglovin’ then your entry will be counted.
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.
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
Since this month is M.E. awareness month, I decided to write my column about how I turned my life around after becoming really sick, I thought you guys might like to read it too.
If you’re a regular reader of my column then you’ll know that I’ve mentioned before that I suffer with chronic illnesses. One of these illnesses is M.E. (Myalgic Encephalomyelitis), also known as Chronic Fatigue Syndrome. I mention this because May is M.E. Awareness month. The condition itself is wildly misunderstood by the general public and, in many cases, by the medical profession. The illness is mysterious and unpredictable, however, the M.E. Association estimates that there are over 250,000 people in the UK whose lives are effected by M.E.
I have had M.E for my entire life, although I was only diagnosed when I was 14. Throughout my life the symptoms have varied significantly. During my GCSE years I was largely unable to attend school. For most of my A levels the symptoms were relatively mild. For the past three years, however, I have spent month long periods in bed and have deteriorated to not being able to leave my house without a wheelchair or mobility scooter. The condition affects every areas of my life now, everything from washing, to using a phone, to my sex life is impacted.
I would love to give you a M.E. master class right now, because I know that many of you might not have heard of it before, or don’t really understand what it means. Frankly, I’d need a lot more than one page to do this, and my editor, for some obscure reason, wasn’t happy about making the whole paper devoted to my column.
I can, however, introduce you to spoon theory. Spoon theory is something developed by Christine Miserandino to explain to a friend what living with Lupus is like, but sufferers of various chronic illnesses have found the theory useful. Christine took five spoons, representing the amount of energy she has for each day. Washing in the morning costs one spoon. Getting dressed might cost one spoon, making breakfast another. That’s three of the five spoons gone by breakfast. That means there’s only two left for my whole day. Spoons cannot be recovered, once they’re gone, there’s nothing I can do but sleep for the rest of my day. Chronic illness sufferers have found this analogy so useful that many of us have adopted the title ‘spoonie’. On Twitter, Tumblr and most other social media you can find a community of ‘spoonies’.
As you can imagine, I have felt like a prisoner in my own body. It’s a sensation which can be truly devastating. You can feel like you’ve lost everything. I learnt, however, that I had to grieve for what had gone. I had to learn to let go, otherwise I would spend the rest of my life bitter for what I should have. I wasn’t giving up, I was accepting that I would never be able to push my body in a way that healthy people do. I needed to accept the reality of my situation. You can’t manage M.E if you’re delusional, if you ever hope to regain control you need to be aware of what you can actually do. Accepting my physical limitations was very difficult for me, but it was clear that if I didn’t then I’d spend my in a pit of depression.
I have often comes face-to-face with stigma associated with my condition. I’ve experienced scepticism from strangers, doctors and even people who love me. I often get told that I would feel better if I had a bit more sunlight or ate more vegetables. Possibly the most infuriating is when people suggest that I just need to try walking. This never comes from a malicious place, people want to help, but they don’t know how to.
Over the last two years I have actively tried to raise awareness about my condition. One of the most important things that I have learnt is that by only talking about the ‘bad’ things, I’m only telling half of the story. M.E. has changed my life, but it hasn’t killed it. While I have had to let go of an old life, I’ve been fortunate enough to gain a new one. I’ve found a way to communicate the struggles whilst still focusing on the positives. I’m passionate about emphasising that it’s not all bad, but I also realise that no good can come from covering up the hardships. All it causes is ignorance in observers, and pain in sufferers.
Looking back I can see that there were three ‘stages’ of turning my life around, and to start living life, rather than just existing.
The first step for me was to change my perspective. My condition is bad, it’s debilitating, but I’m not dying, and I’m not even the worst M.E. sufferer. This came to me as a bit of a revelation. I was being taken out of hospital, and on the way we passed the child cancer unit. It struck me that I could be so much worse off than I was. No matter how much pain I’m in, I know that I’m going to survive.
Secondly, I had to stop comparing myself to healthy people. I might not be able to go out, or take advantage of the opportunities that the average student might be able to take, but I have other things to be thankful. It is through my illness that I discovered my love of writing. Being stuck in bed all the time gave me a lot of time to work on this initially as a hobby, and now hopefully as a career. If I wasn’t sick maybe I wouldn’t have this column or had a blog which, let alone be shortlisted for the Cosmopolitan Lifestyle Blog awards of 2012. There’s a verse from the Bible, which I always use to encourage myself in this respect. It says that God can use any bad situation for good. Whether you believe in God or not, I think that this is an idea which anyone can draw strength from.
Finally, I had to change the way I saw myself. Partly this is to do with body image- I can’t exercise, the medication causes me to gain weight, and sometimes the only activity I can manage in a day is to eat. I’ve had to learn not to be bound by what society might say is beautiful, and recognise the beauty that I have. I also had to stop seeing myself as a victim. I’m not a victim to my illness. I’m a woman who fights her illness every single day.
We can’t control what happens in our lives. I can’t control the fact that I have this chronic illness. What I can do, however, is control how I respond to it.
This blog was written by Paul but dictated by Katie. For the foreseeable future, because of Katie’s illness, this will be a common format here at Chronically Katie.
Firstly, let me apologise for the lack of content on here over the last few weeks. As I’m sure you’ve guessed, I’ve been very ill for some time now. The ‘brain fog’ which is associated with my illness has been worse than ever. It’s got so bad that I’m struggling to read, or even listen to audio books. These are the kinds of activities which is usually fill my life with when I’m stuck in bed 24/7. The most worrying development associated with this has been that I’m seriously struggling to hold conversations. It’s not because I can’t concentrate, it’s because I literally haven’t been able to understand what people are saying. When my husband speaks to me, it’s like he’s speaking another language.
As you can imagine, these recent developments have made it impossible for me to write my own blog posts. That’s why Paul is writing this one for me. I’m relaying to him everything I want said, so this is still me, but he’s helping by putting my mumblings into sentences. This is going to be a common format for this blog over the next few weeks. I’ll let you know at the beginning of each post whether I’m writing it myself or whether Paul is acting as my scribe.
Chronically Katie YouTube channel
I’m not going to to let my illness beat me. I’m especially not content to let my illness stop me from doing what I enjoy. To get around this new wave of ‘brain fog’, I’m going to be making more videos on my YouTube channel. I’m really looking forward to exploring this alternative media format. I’ve already got a few videos on my channel. Please don’t forget to check them out and let me know your thoughts on them. I’m very new to vlogging, so it would be great to get some constructive feedback.
At the moment, I’m working a lot on creative outlets so be sure to subscribe so you don’t miss anything.
Giveaway coming soon!
Another exciting development here at Chronically Katie is that soon I will be announcing a competition giveaway. I will be revealing the prize in a later post, but what I can tell you is that it will be well worth your attention. The deal will be that only my subscribers can enter. Make sure you do subscribe to the blog now so that you don’t miss out later. You can subscribe by entering your email address into the sidebar tool. If you’re not sure whether you’re already a subscriber- do you get an email each time I post a new article? If not, then you’re not currently a subscriber.
Keep your eyes out, over the next few weeks, for more details regarding the giveaway.
As ever, thanks for reading, watching, and/or subscribing.
Love Katie x
P.s. Are you on Tumblr or Instagram? I post there regularly throughout the day, follow me by clicking the links below.
A quick message from Paul: Knowing how much Katie loves to get mail, many of you have been asking for Katie’s address so that you can send her stuff. We haven’t been able to establish a P.O. Box yet, so we can’t publish her address online, but you can email Katie at chronickatieblog@gmail.com to request her home address. Getting mail from her readers always gives Katie a massive boost, so I can’t encourage you enough to get in touch.
Our dates aren’t always exciting & adventurous but what matters is that we spend quality time together.
So today is Friday which in the Davies household means date day! Every week Paul and I set aside at least one hour to do something fun together. We don’t have to spend the whole day together, but since it also our day of rest we can’t do *anything* work related. That’s not really relevant at the moment because we’re both to sick to do any university work anyway. Knowing that this is the one day we don’t have to feel guilty about not working though is a big bonus, it’s really brought back that Friday feeling we used to feel as a kids.
Today I woke up feeling awful, and I mean really awful. My arms were aching a lot and I felt completely exhausted. This isn’t really different from how I’ve been feeling for the last fortnight or so, but it just felt a bit worse this morning. As usual, I have no idea why since all I have done for the last week is rest. Anyway, my health having dictated that going out was off the cards, Paul and I agreed to revert to our secondary plan, a mug decorating date in our lounge. The plan is to get all of our duvets and pillows and make a big comfy fort to get me out of bed and then use Sharpies to decorate a mug to give to each other.
Even though this is a slouchy, not much effort, low energy kind of date purposefully, I still want to make an effort to look nice, in the same way I would have when Paul and I first started dating. Up until recently, I would have known that doing my hair and make up was off the cards and so would have just moped about my appearance. Now, however, I have begun to develop a low energy and pain make up routine that I can do even when I have bad days like this. Since writing out the routine and taking photos would not only take a long time but a large amount of energy I’m going to make a YouTube video instead. It will be uploaded to my YouTube channel soon so make sure you check back there, or even better subscribe so you definitely won’t miss it (never miss an opportunity for a plug.
I don’t think this video is only relevant to sick people though, I don’t see why a normal, healthy person can’t check out this video and use the routine when they’ve only got 10 minutes until they need to leave for work and they look a mess. Or, for someone, I’m especially thinking of young girls, who don’t need to wear much make up.
The whole routine only takes about 5 minutes but I’ve been doing a step, resting for a while, doing another step, etc, so that by the time it’s date time I’m not exhausted. What would you know I even managed to write this blog post. I wonder if it’s something they put in bronzer…
Love Katie x
If there’s anything you’d particularly like to see either here on my blog or over at my YouTube channel, then pop a comment below. I’ve already had some great suggestions but I’m always open to new ideas. Remember, it doesn’t have to be beauty related!
I’m still working on the new layout, but I’m getting there, don’t you think?
If you use GoogleReader to follow this blog then you’ll soon be about to lose contact. Google is terminating this service in the near future, so to makes things easier for you I’ve signed up to Bloglovin so you can easily keep up to date with all my posts.
Alternatively you can get e-mail updates by popping your address in the labelled side-bar on the left hand side of this page.
If you signed up for updates from me either by e-mail or on WordPress before I moved to a self-hosted blog, I’m afraid you’ll have to re-sign up. Sorry about that, but I hope you love my blog enough to re-subscribe!
Love Katie x
“You’d be forgiven for thinking that I’d abandoned this blog, but you wouldn’t be right, very far from the truth in fact. Although I have been working a lot on Chronically Katie in my mind, very little of it has appeared on your monitor because I’ve been too unwell. For the last two months I have suffered from one illness after another, aside from my usual chronic illness of course.”
Unfortunately this is as much as Katie has been able to write over the last few weeks. As she says above, Katie has been extremely ill for the best part of two months now. There’s been a real battle going on behind the scenes here at Chronically Katie. She’s winning the fight, but as with any war, victory is hard fought and there are have been many injuries along the way.
Katie has asked me to step in and catch you up on what’s been going on. Quite a few technical changes are taking place at the moment. I’ve been working on moving the site to a self hosted platform and there are going to be changes in blog layout and design. This is all very exciting, however, it’s taking it’s time because I have no experience in all this. I’m teaching myself what to do as I do it. We’re asking that you bare with us while these renovations are taking place.
On a positive note, Katie is hoping to do a video blog sometime soon, so keep an eye out for that. To make sure that you don’t miss anything, you can subscribe to Katie’s You Tube channel.
My final update is that if you wish to send Katie anything in the mail, you can request her address by emailing chronicallykatieblog@gmail.com. You can send products for her to review, or something little to make her feel better when she’s so sick. She’s spending most days in bed so I know she’d love to hear from her readers. Feel free to send her anything from a postcard to a little gift. She loves receiving mail so it’s sure to bring a smile to her face.
Thanks for your patience,
Paul (Katie’s husband)
