Sunday, 29 December 2013

Thanks to YOU

This year, 2013, has been a phenomenal year for The Girl With Arthritis! In 2012 I was lucky to get a few views a day but this year my views have gone above and beyond my expectation. Iwas even given some awesome opportunities. This is all because of you reading my posts! Thanks so much for sticking with me from the beginning or just reading for the first time. Not only has my blog been more successful, but greater things have come as well. I think my favourite is getting to 'meet' and talk with new people through this and other blogs. You've gotten me through the worst of times and helped me celebrate the best of times.

And though 2013 was a great year for the blog, it was a very hard year for me. A lot happened over the course of the year in all parts of my life. Arthritis wise it was a tough year and I went through a lot between dealing with the disease itself and complications from it. I still am going through a hard time with it. Since the year is almost over, I want to thank my family (you know who you are) for helping me through. I also want to thank my two best friends in the world for sticking with me through it: I've lost many friends because of Arthur and I can't describe my thanks for having you who never ran but stuck with me. I couldn't ask for better friends. :) And of course thank you to everyone reading this and to all the writers who's blogs I follow: those have always helped.

The new year is approaching, and as a thank you for sticking with me, I've been working very hard. 2014 is a year bringing changes and cool things to Arthritis Girl! And as these things come, just remember: They're all for you.

Friday, 27 December 2013

A Child's Double Point of View

I hope everyone had a wonderful Christmas! I certainly did. I've had the pleasure of being surrounded by family for the past few days. Although sarcastic by nature, I don't mean it sarcastically: it was actually nice to see my family again. Mostly. 
There was one event in particular that stands bright in my memory. It was towards the end of the night and only a few were left. My younger cousins were playing nicely when the inevitable happened- a crash and some crying. An object that wouldn't be heavy to an adult but very heavy to a very petite eight year old fell on said child's foot. Even though we're still questioning if it really "just fell" or "if he threw it at me," one thing I can't question is that the child was really hurting. What I thought was interesting was the reactions of three people.

The first person had a wonderful time with the child, however it was quite miserable for the child. He really enjoyed jokingly telling the child that she has to go to hospital and such. I really hated how he made it out to nothing

The second person totally denied the child was in pain. Rather than encouraging the child to walk on the very bruised foot which would help, she kept saying "it does not hurt, you can walk." Sounds familiar?

The third person is one who is very experienced in having a child in pain who is crying. She let the child cry, she spoke calmly and used stories and humour to distract, and she helped the child get up and walk without a struggle. 

My mum is such a hero.

Just a thought: Sometimes it doesn't take a chronic illness to see different sides of people. Sometimes it's a few pounds dropped on a child's foot.

Saturday, 21 December 2013

Rest is Magical

Oh, to be young and rested... Wait, that's a total contradiction. From what I'm told, young people usually live perfectly fine off borrowed energy, caffine and crashing at two in the morning until they're tweety five-ish. That seems about right to be honest. Except in the cases of if you have some sort of autoimmune pain disease: You still live off borrowed energy, caffine and falling asleep at two in the morning (and probably some medicines) but you tend to flare, be miserable and lots of other 'fun' things. Oh, to be young and chronically ill.

I'm a jealous person. I'm jealous that a week of school and Christmas shopping takes a lot out of me. I'm jealous there are days I'm doing work in bed or on my couch because I can't muster the strength to sit up correctly. I'm jealous that although I can and will push myself to go and do things, I often end up very painful and tired after (but never regretful). For goodness sakes, I'm jealous I can't donate blood!

At the moment I am writing from my bed. Everything is hurting. It would probably feel better if I got up and stretched but I just don't have the energy right now. I use to take an art class on Saturday for fun that I had to wake up at six for. I'm so glad the class is over because my body really needs rest after a busy week, as shown by today. I'm supposed to be going to a Chrismtas party in an hour and a half and I'm literally not getting up for another half hour. I need it.

Listen to your body. Rest is a magical thing for it, and even though there never seems to be enough  every bit you can get. This busy world doesn't seem to be made for us sometimes, but it doesn't mean we can't make it work.

Tuesday, 17 December 2013

Touch is Power

With all the wonders of science and technology, researchers have found a new therapy that is able to help with chronic pain, depression, and all sorts of diseases: Touch therapy. Different from massage therapy, touch therapy is simply a person touching certain points on the body to relax a person. Touch is also known to release chemicals in the brain that reduce pain and give joy. It's amazing what our bodies can do from touch, so why has it never been pleasant for me?

I've had arthritis since I was extremely young. There was evidence since I began walking when I was one year old. My uncles were very... Playful. They loved to toss around their nieces and nephews but I never had much of that. I recall it being very painful, and to think that was only the beginning! I didn't like games in school very much either as they tended to involve touch that was often a slap as they ran by (I was always rubbish at running anyway). I was about eleven when my 'friends' thought it was funny how I reacted to touch, especially my back. They loved to play "Watch How Far Elizabeth Jumps," often poking me in the back randomly. Five points if I jumped, and ten if I said "ouch." You won if I started crying. Though people changed through out the years, the game kept on. It only stopped at my sixteenth birthday party after an adult yelled at them for making a poor girl miserable on her birthday.

I'm still super sensitive to touch, especially recently. A oving touch or hug is pure bliss, and is the best medicine some days. But I still worry about people tapping my back, trying to get my attention not realising it's very painful. Thankfully I've no people in my life who like to play painful games anymore. But I still have horrible chairs, which isn't fun for anyone.

Touch is powerful. Use it wisely.

Sunday, 15 December 2013

"It's Only Psoriatic Arthritis."

A lot of people have the notion that some kinds of arthritis are 'better' than others. Some people argue it's worst to have an autoimmune arthritis than an osteoarthritis, and it goes farther to which kind of autoimmune arthritis is the worst. I think what we don't understand is that it isn't which kind of arthritis is the worst, it's how each individual's disease progresses that judges how severe it is.

Let's take a conversation from about a year ago. It was between my mum and the parents of a friend of mine. My friend's parents had run into my mum and they began to chat. My Friend's parents knew about my arthritis and asked about it. At that point I was not doing well in any sense: Not only were my joints a mess, my kidneys weren't so hot From the medication. Anyway, before my mum brought up that my Friend's dad asked what kind of arthritis it was. My mum told them juvenile psoriatic arthritis, to which he replied "Thank God it's not rheumatoid!" That's when my mum explained what had been going on with me, and my friend's father quickly learned its not the name that judges how bad the arthritis is.

I don't know what it's like to have any other type of arthritis, or autoimmune pain disease in general. What I do know is how much one disease can differ between two people. I have heard of people who have rheumatoid arthritis of one joint and are barely bothered and I know people who have osteoarthritis and can barely move. There are many other cases and examples. But the main point is we can't judge a disease by its name the same way we can't judge a book by it's cover.

Written by the person who wants to stop hearing "Thank God it's only psoriatic and not rheumatoid": Me.

Wednesday, 11 December 2013

Learning How to Hug

"If you didn’t have to worry about hurting anyone’s feelings or being prim and proper, what would ask for or want people to know?"

The one thing I would ask is for people to learn how to properly hug a chronically ill body. I've had hundreds of hugs in my life, and I can count on one hand how many were 'just right. ' There are times I really just need a hug. Unfortunately it can often be very painful: People squeeze too tight or are very distant and cold. People tend to not want to touch me because they know it hurts sometimes, and it's horrible to know people are afraid.

The ideal hug would be that given by gentle arms. Even though squeezes are painful, you can certainly wrap your arms around me. Don't be afraid of me; I promise I won't break or pass on my chronic illness. I might feel awkward and stiff, but I'm not trying to be cold: It's just how my body works. And please excuse my freezing hands! After all, don't they say cold hands means there's a warm heart?

Understand that I need a minute to hold on. There's so many times in a day I want to give up, but I know I can't. Often times I'm mustering every ounce of strength I have to keep going on. I don't want to have to do this by myself. Let me heal for a minute: Touch is powerful and healing, and I need all the healing I can get. Let me know I don't have to bear it alone and I have you by my side. I hope you  understand if there's a tear running down my cheek. You have the power to reach through the wall I put up that hides my illness, and that's a side people rarely see.

If you really want to help me battle my illness, it's simple: Learn to give gentle, loving hugs. They are much more important than most would think. 

Monday, 9 December 2013

I'm Such a Jerk

As we get older and our situations change, our groups of friends tend to change a lot. Before I was diagnosed with arthritis, I had a close group of friends. After I began treatment after diagnosis, I lost them. We were young and I don't think they could really handle having a sick friend at that point: I understand, I stopped being mad a few years ago after I realised that. I think chronic illness reasons for lost friendships are the easiest to understand but also the hardest wounds to heal.

Awhile ago,  I had some friendships end. To sum it up, I was told repeatedly that "I'm such a jerk," and that these friends are "so much better [people] than [me]." They meant it. I know them well enough to know they meant it. I'm going to leave it at that: I don't want to be too much more of a jerk.

I tried to think of all the things I've said that could be hurtful, but I really couldn't think of anything. I consulted a few friends to ask if I'm hurtful or if the way I talk could be taken the wrong way but I was reassured I'm not at all, and that whoever said I was is completely wrong. I didn't believe it at first. It wasn't until I cheered up another friend in my class later that day and was called a jerk by the same group earlier. I couldn't do this anymore, and I had to make my mind up now on what to do.

I had to make a choice. I could either fight back, or walk away. The situation stressed and tensed me too much to ignore it anymore.

I walked away. Okay, theoretically I did but I couldn't: I had a graphic design class. But I walked away from those people. I walked away because the strength I have is to battle arthritis. I walked away because I would rather have friends who called me nice than those who put me down. It was easy to walk away from the negative because I had so much positivity to go to.

Even the smallest removal of negativity from one's life can make a big difference.  Everything has been much better for me lately. I have a lot of positive people surrounding me and have been thriving in school and work. I've gotten the opportunity to help out in a few projects and your groups. Physically I've done well (except for recently). I've been much more confident too. A lot of good comes out of reducing the negativity in our lives. I encourage you to try and do the same. My only regret is not doing so sooner.

Thursday, 5 December 2013

Joyful Mother and Son

One place I can commonly be found is at the library, and that's not a surprise considering I volunteer there. I gets me up and moving, and I enjoy the work: Typically putting away books and tidying. The area I most commonly work in tends to be the children's room, which I love aside from the low shelves and the messes that appear as you're not looking. Regardless, I adore the library: Books are one of my favourite ways to learn. But I know too well it's usually people who teach us the most important lessons.

In my first few weeks there, I met a woman and her young son. The children's room was filled with children of every age playing or doing homework, and many parents supervising. I was shelving DVDs when the woman came with the little boy, the both of them with a spring in their step. The woman spoke with an excited voice, pointing out paintings the children had done earlier and the different sections. The boy didn't speak but he smiled at everything. The two bounced into the DVD section on an adventure to find all the Thomas the Train DVDs. I smiled at the two as I put films on the correct shelf when the woman smiled back and said, "He's autistic and doesn't talk." I didn't know why she explained that to me, but I accepted it, "I used to play with a boy who was autistic and didn't speak." She relaxed after that. When the boy found Thomas, he jumped up and down and made joyful noises. "He's just trying to speak," she told me. "He sounds very happy." I said.

It wasn't until they left the aisle that I understood why she took the time to explain why her son acted different. As they walked, parents and their children stared and even pointed at the very happy boy. The mother distracted her son, pointing at murals and posters and anything that was aware from the stares. It was easier to teach one person and help them understand than a whole group. To protect her son, she shielded him from what didn't understand him. She keeps him happy and unaware that people stare, and even make fun of him. Meanwhile I watch them deep in a conversation that is only verbal on one side but deep and meaningful for both. I've never seen that little boy frown, except once when someone scattered the Thomas DVDs. I hated that frown so much, I personally make sure all the Thomas the Trains' are kept on the same shelf.

I don't know why others don't accept difference, and make others feel like intruders. But we must stop putting all our energy into complaining that others don't understand, and instead put it on those who do. Though the anger that filled me when people stared at the boy was intense, it will never be as strong as the happiness I see when he and his mum bounce happily into library.

Tuesday, 3 December 2013

Thinking Away Pain

Waking up isn't so hard, it's the getting up part. In the morning my back is killing me and more recently it's extended to my ribs. They're just so achy in the morning, like I got punched there or something. It's odd and I don't like that. But it is a quite common symptom in autoimmune arthritis- of course bring it up with your rheumatologist if you are experiencing this. I think wake up pain and late night pain is the worst kind of pain because your focus tends to only be then pain, rather than other things. It hits you at a time when your most vulnerable, mentally and physically.

I once read that although we may experience pain in a different body part, pain always comes from our brain. It is best to keep our minds busy when we're in pain. It also explains brain fog. I try not to dwell on pain, but it's not always possible. So today I decorated my Chrismtas tree. It's a small, white little thing and it's all dressed up in red- it's warm and quite festive. I went through my wardrobe and gathered a large collection of clothes to donate. Right now I write next to my tree, all nice and cosy and I'll probably read after. Sometimes pain doesn't make it possible to do those things, but focusing on music, films or on books can usually be an option. It all depends on what you like.

“Pain is just a state of mind. You can think your way out of everything, even pain.” 
― Rodman Phillbrick, Freak the Mighty

Sunday, 1 December 2013

Gift Ideas for Arthur

As it is now December and officially time to start our Advent calendars, I think it's time for the dreaded C word. No, novt cortisone; Chrismtas! 'Tis the season for festivities and fun! I can't think of any time of year I love more, except perhaps the summer when I can actually move. Anyway, people are beginning to come up with present ideas for their friends and families. I can completely sympathise if you are struggling because there are quite a few people on my list giving me a run for my money (you know who you are). I am a firm believer in the thought being what counts the most- I'd rather recieve nothing but told how much they thought of me than something that was obviously bought in haste without a thought to who I am. That said, I think it's sometimes hard to come up gift ideas for those of us with chronic illnesses. Since most people aren't millionaires, my wish of a hot tub won't be on my list, but there are small things that are very appreciated.

1. Gloves, Scarfs and Hats. Many of us have a hard time keeping warm, and the thought to help us keep warm is greatly appreciated. Fingerless gloves and mittens are great as well, especially when they have flaps to cover the fingers when not in use. Buy one or two sizes larger if you are buying for someone who uses wrist braces. Hand knitted items are great presents, as one knows you stopped and took the time to really think about them. Keep the person's style sense in mind: My auntie once bought me a hat. I don't even wear hats and it wasn't one of which was even remotely my style. I knew she only bought it because it was my cousin's style, who got the same hat.

2. Heated Socks and Slippers. Along the same lines as the above ideas, these are good for relaxing and helping one's achy feet and ankles. Often these socks and slippers have small pockets to hold a heat pack, which is often microwaveable. Bonus points if you can find the animal shapped kind.

3. Books. I may be a little biased on this one because I'm a big reader, but I believe books are some of  the best gifts you can give. What's better than giving the gift of adventure, learning and imagination? Of course, this isn't appropraite for everyone since some don't read too often and might not appreciate the gift. But to the right person, it can be a wonderful gift. Now, this can be a tricky gift too as not only can it be hard to pick a title, you also have to take one's hands into consideration. I recommend asking one if they use an electronic tablet to read or if they prefer paper books. Gift cards for the tablets are perfect, as are book gift cards. I prefer real books. If you're stuck on trying to find a good book- particularly for a young person-, I recommend The Fault in Our Stars by John Green (A teenage romance, with a medical twist), The Book Theif by Markus Zusak (A World War II fiction), and Divergent by Veronica Roth (Dystopian Chicago, from the point of view of a teenage girl).

4. Restaurant Giftcards. Believe me when I say they're extremely appreciated. Just make sure it's arestaurant  that can cater to any dietary restrictions, if that may be an issue. If the person happens to be in a huge flare over Christmas, I recommend Giftcards for places that deliever. It can be a huge relief to not have to worry about cooking, especially if the person has a family.

5. Coupon Book. I don't mean literal shop coupons. I mean write down some things you could possibly do for the person on a little certificate, so they can use throughout the year. Not anything extraordinary, just little things. To drive them to an appointment, to cook dinner and little things like that. Don't write down anything you can't keep your word on. These are very helpful, especially during flares.

These are just a few ideas, and I'm sure there are plenty more you can think of! Just remember to really think of the person. It's honestly the thought that counts. I'd rather a thoughtful card than a football any day.