Long time, no write!

 It's been a very long time since I last wrote anything for this blog. The world, as I'm sure you know, has gone crazy. Over the UK's numerous lockdowns, I lost the motivation to write anything. My lack of school and my depleting literary skills did not help one bit. But now, in Lockdown #3, I decided it's time to finally stop letting the sadness get to me, and to start helping others. 

First up!: Discord! I've made a Discord support server for anybody - whether you have arthritis or want to support someone who does - this is the place for you. Whilst it's still a work in progress, I'd like to welcome anybody interested who maybe needs support, or if you'd like to meet people who have the same condition as you! Or, you may be interested in learning about arthritis to help somebody you know? If that's the case, give yourself a pat on the back! Arthritis can be a dark place for some people, so taking the time to learn about this condition is a wonderful thing to do. Here is the link: https://discord.gg/C9CXmKA

Please feel free to share this to anybody you think it may help :)

Secondly, YouTube!: I've had a YouTube channel in the works for a while now, but I'm at a loss for what content to make. I'd like some input from people on what you'd think would be worth talking about! Please comment on this post or send me an email at jiacaitlyn@gmail.com

Ko-fi/Donations!: In my free time, I love to draw! And I remember that, during my diagnosis, I was given a booklet to help people understand arthritis better, including myself, my family, my teachers and my friends. This booklet was called Tim Has Arthritis and I, being interested in art and illustration, would love to make my own series of booklets such as these. I would like to make ones separate for each 'crucial stage' of your life. For example, dealing with arthritis becomes different once you transition from primary school to secondary school, then to college/sixth form. You learn how to cope with it physically, but it then mentally becomes more of a challenge. I'd love to create a resource for people of all ages, and help their friends/family/teachers understand arthritis and the physical (and mental) toll it can take as we get older. I will set up a Ko-Fi page for donations, for those who would like to help make this happen! If you donate, you'll get your name in the booklets! 

I would also like to use this platform to raise money for arthritis charities, such as Versus Arthritis. 

I hope you are all keeping safe and well ❤

8 Years and Counting

"It's been 8 years since my diagnosis- but I wouldn't change anything."

I was diagnosed on the 12th of August 2011 at age 7.  I didn't really understand my diagnosis, nor do I remember my mum's facial expression as we heard the news. To be honest, I don't remember much about the day I was diagnosed, but I do know how much that day changed my life.
     I remember having a meeting with my Year 2 teacher and my mum, telling her about my arthritis. It was after school, and everyone was gone. My mum came into the classroom with sheets of paper; hospital letters. We all sat down at a table and I just listened to my mum and my teacher talk. It wasn't until my mum said, "She has arthritis" I tuned in again. My teacher looked at me in surprise and she said, "I'm sorry to hear that." I didn't feel anything as she said that. I still don't, when people discover my condition. To be honest, I still don't understand it, no matter how many questions I ask or how much my consultant tells me; I don't think I'll ever understand it. It's a condition I've grown up with, I've had it over half my life.
     It's been 8 years since my diagnosis- but I wouldn't change anything. I used to ask myself, "Why not my brother? Or my sister? Why me?" But then I realised that was unfair and that they'd be thinking the same thing. I've come to terms with my arthritis- I have days when I'm unhappy, but who doesn't? It's all about learning to find ways of coping that are effective and beneficial for you. For example, on my 'down days' I take it easy: I take some painkillers, have a warm bath and sometimes just settle down with a hot water bottle with a book or a movie. You don't have to feel guilty for taking these days off as it's all for your recovery, and also your mental stability. It can take a lot for you to get out of bed on these days, especially when all you want to do is go back and sleep the pain away, or into the next day. I sometimes feel guilty for taking these days off, because sometimes I don't like explaining that I'm in pain; I'm often just quiet and unresponsive. It's often hard explaining how you feel to others, especially when your pain is mostly invisible. There's been many days I've had that were like this, and here's a few things I do to relax and cope which you might find good to do as well:

• read your favourite book
• have a bubble bath with candles
• wrap up in a blanket on the sofa with a hot water bottle
• draw/paint something

If there's anything else you'd like to see on my blog, please don't hesitate to comment or contact me at jiacaitlyn@gmail.com

-Caitlyn 😊

   

Talking with Arthritis Foodie

Hey! Today I have something a little different to write about. I reached out to Arthritis Foodie who posts about natural remedies for arthritis and also documents her own journey about living with arthritis. 
She has had Seronegative arthritis [1] since 2013 and decided that, after a flare up, it was finally time to take control. In September 2018, she began finding holistic ways to heal and to connect with other people living with arthritis. 
Her goal is to one day stop taking medication for her arthritis. 

I asked her a few questions, varying from lifestyle to diet and exercise. Here is what she had to say:

Which foods do you personally find most beneficial to your arthritis? 

It’s all still a massive experiment, and I’m still learning all the time (it’s not been a year yet!) but I honestly find that eating 100% natural has made a big difference to my body, from my immune system to my arthritis, eating well is paramount - and essential to keeping my immune system strong. It’s the overall package of what I’m doing - so it’s really hard to pick one thing. If I had to choose on this journey so far, I’d say apple cider vinegar in the mornings, pre+probiotics, Kefir, and matcha!

Do you have a daily routine of exercise? Does it help?

I commute to work, which means I have quite a number of daily steps - especially if I can’t get a seat on the tube. If I don’t get my steps in, being originally from Yorkshire I love the countryside and outdoors, so if I can - I take a walk on a weekend either somewhere suburban in London or if I’m home with my family it would be in the Derbyshire countryside. I have a daily exercise regime - stretches and small activity - but to be honest I never manage to do it everyday - often I’m so exhausted and don’t have time to do it - or I’m in too much pain. I see Genuine Georgia once a week and battle through the pain to do it though - as exercise is anti-inflammatory and its so important in the overall lifestyle I’m doing with Arthritis Foodie.

When were you diagnosed?

I was diagnosed incorrectly for a couple of years, but properly diagnosed in 2015. I’ve had symptoms since August 2013, so it’s been about 6 years now.

Are there any workouts/physio exercises that you recommend?

I would recommend that anyone looking to do exercise personalises it to them - not everything works for everyone and it depends what your aims are... For me, I want to build muscle and strength in my legs/upper body to support my ankles. Exercises wise - start with stretching - if you can’t manage yoga just google or YouTube stretches for the problem area you want to try to help.

What are your top 5 tips for diet and lifestyle for someone with arthritis?

Top tips! Erm, gosh there are so so many things that I want to say here, and I don’t think 5 is enough. But 5 things to look after the most when living with arthritis would be:

1. Diet & exercise (you are literally what you eat - it’s science! Take care of your body because you only have one!)
2. Sleep (getting rest is so so important and as we struggle with fatigue enough, you have to look after this one as much as you can)
3. Mind (living with pain is so hard, but being mindful of it, and when to let it in or when to battle on - is vital)
4. Self-care (it’s okay to say no sometimes, and put yourself first - the people who love you will always understand)
5. Patience (it can be so frustrating - the hospital appointments, the medications, trying this and that, but be patient and kind to yourself).

Emily―Arthritis Foodie― has a website, Facebook and Instagram and posts about natural recipes, her own journey with arthritis and inspirational quotes to help you through your day! 

Her socials are:

Website: https://arthritisfoodie.com/ 

Facebook: https://www.facebook.com/arthritisfoodie

Instagram: https://www.instagram.com/arthritisfoodie

Her website is still under works, so give it some time if some parts don't work :) 

[1] When a patient tests negative for RF and anti-CCP antibodies, yet they still display strong symptoms consistent with rheumatoid arthritis, they are given a diagnosis of seronegative rheumatoid arthritis. The term seronegative means they don't possess the antibodies that seropositive patients do (https://www.rheumatoidarthritis.org/ra/types/seronegative/)

How I gained the confidence to do my own injections

"It's all about being patient with yourself."

This is my own experience with injections. I do my injection in my thigh, though it may be different for you. Please be aware!

As mentioned before, I've only recently started doing my own injections. I've been having injections since I was diagnosed at age 7. At first, I had a nurse at hospital doing it for me, and also to show my dad how to do it so that I could have my medication at home. At the time, I was on 25mg of Methotrexate. I later changed to Enbrel EpiPen, but found that I did not like it one bit so I changed to 50mg of Enbrel Vials. 

My dad had been doing my injection for 7 years, not counting my year total of remission. Maybe two months ago or so, I started injecting myself. It was a build up of mixing the vials myself, to putting the needle on myself, then finally holding the syringe to my leg, as if I was about to inject. Eventually, I thought "Screw it! I'm doing it." and in the needle went. To be honest, I didn't even realise I was doing it, and it was over in no time. I realised it's all about being patient with yourself. There's not really much more to it. It did take some egging on from my dad saying,"Just do it. Don't think about it. Just put it in." (Which did get kind of annoying). He did say it was horrible having to inject your own child, no matter how old, but in the long run it is for the best. So I'm grateful for him because if he didn't do my injections at all, I would be a lot worse than I am. 

What topics do you want to hear about next?

-Caitlyn ❤

How Do I Tell My Friends About My Arthritis?

Hello ❤

This is actually a question which I asked my consultant.

Since I was diagnosed when I was 7 (2011), a lot of my friends I grew up with knew I had something but they never necessarily understood it. Moving up to secondary school, I made new friends. They didn't really need to know about it but if they asked, I would tell them. Occasionally wearing tubi-grips or bandages on my wrists or wearing trainers instead of school shoes would often raise questions not only by my peers, but teachers too. It may be different for you. Perhaps you're not ready to talk to your friends, new or old, about arthritis, and that's okay! Or maybe you're here because you're ready to talk about it, but you don't know how. Either way, it's okay! Don't feel pressured to talk about it, and don't feel forced.

Firstly, approach the topic. Of course, you can just say it out of the blue, "I have arthritis and I want to talk about it." Or, if you're nervous about talking about it, approach the topic gradually. Perhaps talk about if your friends have ever had an injection or a blood test? Maybe your jabs at school are coming up? There are lots of ways to approach it, but make sure you respect your friends privacy too. Do not say things like "Do any of you have medical conditions?" because if they do they may then feel forced into a conversation that they are not comfortable having. 

Secondly, there's the question, "Okay, they know I have it. But what is it?". Good question! There's a few ways you can do this. Chances are, they may already know what arthritis is! If so, that saves you a lot of explaining! You can explain it simply, arthritis is an inflammation of the joints and that's all you have to say. Of course, they may have questions, but your answers are A) Completely up to you and B) dependant on your type of arthritis. 

Perhaps, you want to go all out and give the full explanation of your arthritis. By all means, go ahead! This is the definition of arthritis according to Versus Arthritis: 'Arthritis isn't a single condition and there are several different types. I can affect people of all ages- even children and teenagers. Arthritis can make life tough by causing pain and making it harder to get about. The symptoms of arthritis can vary from week to week, and even from day to day. Many types, such as osteoarthritis and rheumatoid arthritis, are long-term conditions.' Whew. There's probably more to it, lets be honest. It all depends on you and how you want to tell your story! If you have any questions, you can ask them below. 

Which topics do you want to hear about next? Let me know!

-Caitlyn

Welcome

Hello! 

Welcome to my blog Confessions of an Arthritis Warrior! 

My name is Caitlyn and I am currently 17 years old. I'm guessing you're here because, like me, you have arthritis. Well, luckily I'm here to help you! 

Being a teen is an awkward stage for lots of reasons; exams, crushes, school...but most importantly, it's when we have very little support to do with arthritis. For me (though this may be different for everyone) 15 is when you're not quite an adult, but you're not a child, so you're left in the void of "What do I do now?". Hopefully, using this blog, we can all help each other with not only physical support (such as physio exercises) but also lifestyle (foods good for inflammatory diseases) and mental support! No more "My disease makes me different," or "I'll never be normal." I've had those thoughts too. 

It gets better. It may take a few weeks, months or even years, but you will overcome the negative thoughts that come with arthritis, and you will be okay.

Thank you for reading, and welcome to my blog!

-Caitlyn