Arthritis- the physical and emotional journey

Believe; a word I was taught from a dear friend, she showed me the real meaning of believing and that the only way to get through the tough times is to believe there will be light at the end of the tunnel.  I always remember that when times are rough, it will clear up sooner or later, and that there is always someone that could be worse than me, so stay strong and wait until everything is fine again. There is no use sitting around being sad because everything isn’t how you imagined, getting up and doing something, finding ways to make everything seem better is what I do and will always continue to do. Yeah sure I have my breakdowns, where I feel things have just crashed and burned right in front of me, but I pull myself out of them soon enough and I’m ready for whatever comes next. Having JA (juvenile arthritis) can make life tricky and sometimes all I want to do is lay in bed and sleep the pain away, but I know it wont work, there will always be the pain. So my message today, is believe, stay strong and know that some day it will get better.

Not many people want to remember the bad aspects of their lives for the simple fact; it is bad. But sometimes the troubles in life are too hard to forget because it is right in front of your eyes and impossible to remove.
I have lived in pain and discomfort for the last 5 years and forgetting the worse parts of my life has been a mere struggle.  It isn’t always easy, but you have to find the light in the tunnel, as it will always be there.

Today is the third day I’ve had high amounts of pain in my back, it hurts to stay still but it hurts to move, it’s hard overlooking the pain to find something happy but I keep searching, I do whatever I can to take my mind away from the pain. I spend time with family, talking, watching movies and swimming, I talk to friends, and I find little activities I can do around the house. However when I am in great pain, I take a break, grab an ice/heat pack and put on the painful area. It will help for a short time and whilst the pain is gone I continue on with my everyday life, attempting to ignore all my troubles.

We can’t all live in sadness yet there is no life with perfection. When the sad or painful times come you must keep moving forward, because if you don’t you’ll be left behind in the darkness. Don’t be afraid to take a helping hand when you need it but don’t be too reliant on others. You must find the light and look toward the future.

There are some things in life that are worth the time or worth something in our lives. Having arthritis means there is pain and when you don’t have that pain live it up like there’s no tomorrow. 
The last time I had absolutely no pain was November last year. I was still at school and there was this lunch time sport competition. I decided I’ll give it a go, it being basketball. So anyways, my house leader picked me to go off because I was trying so hard for our team, but when I was off, I realized I had absolutely no pain, so begged the teacher to let me back on. I didn’t want to miss my chance of playing sport because I hadn’t played anything in at least 5 years, I was missing it! When the game was over, everyone was asking why I was so keen at going back on, and so I told them the truth. Why was I going to miss an opportunity of having fun, cause who knows when my pain is going to come back and how long it would be until I was again pain free. 
Two days later my pain was back, but I didn’t care because I had some fun while my pain was on holiday. I always try to make the best of what I have and it is one of the most important parts of managing arthritis because you need to stay strong and positive.

Over the time I have had arthritis I have done research to find out more about it, I’m always finding out new things. This blog tonight is for people who don’t know much about it. A lot of this information I can relate to because I live with it every day. 

What is Juvenile Arthritis?
Juvenile arthritis is an umbrella term used to describe arthritis in children. The diagnosis is considered if the disease begins before the 16th birthday and lasts at least 6 weeks.

The disease is extremely diverse in its features. Many of the children are affected in only one or a few joints, commonly referred to as monoarthritis or oligoarthritis, and often as an acute event. Some may have arthritis in multiple joints, or polyarthritis, which tends to become chronic. Many children are also affected in areas other than joints—eyes, skin and other body tissues. In some cases, the symptoms may alter over the course of the disease. 

Juvenile Vs. Adult Arthritis

Juvenile arthritis is not a mini-version of adult arthritis. To better understand juvenile arthritis it is important to view it in the context of arthritis over the lifetime. Arthritis is marked by inflammation of the joints, causing pain, stiffness and damage to the joint cartilage and surrounding areas.

The damage to a joint and its surrounding structures can lead to joint weakness, instability and visible deformities. Depending on the joint involved, arthritis can interfere with many tasks of daily living, such as dressing, walking and climbing stairs, etc.

In adults, arthritis is generally considered to be a disease of the elderly. This is largely because the development of its major form is due to the destruction of cartilage. In fact, the symptoms of most forms of adult arthritis develop over a much shorter duration, manifesting across all age ranges. A characteristic feature of arthritis is its extreme diversity. More than 150 forms of the disease are known. Both acute and chronic phases exist, with a tendency to become life long. Females have the disease more commonly than males.

Like the adult forms of arthritis, the main symptoms of juvenile arthritis are pain, swelling and stiffness.

 The Experience
Arthritis can have a significant impact on the daily life of a child. Pain, stiffness, limited joint motion and endurance arrive early. In early phases of the disease, the illness limits participation in certain activities only. However, with time the impact may turn into a severe or profound disability. 

Pain
Pain is a key expression of arthritis. It generally tends to be mild to moderate but causes much discomfort and limits many types of activities. Children usually describe the pain of arthritis as hurting, stinging, warm and uncomfortable. The experience varies greatly from joint to joint, not only daily, even hourly. The source of pain in juvenile arthritis is mostly inflammatory in nature. 

Physical Limitations
Children with arthritis often have physical limitations. In addition to joint erosions, long periods of active arthritis may impair muscle development. Inability to move freely and difficulty in gripping are some of the common outcomes. Gait deviations, including decreased velocity, cadence, and step and stride length, may also result. Due to lack of physical activity, children with arthritis may become quite unfit.

Arthritis also puts children out of their daily routine. Children with arthritis are more likely to have days of reduced activity, including being away from school. The varying degrees of pain and stiffness can affect a child’s mobility, strength and endurance. For example, children may find it difficult to sit on the floor or hold pencils, crayons or paintbrushes, or may have a problem carrying books.

Social Isolation
Children with juvenile arthritis can become socially isolated or experience social difficulties because they are less likely to be able to participate in a variety of physical activities including play and sports. Alteration in physical appearance such as swollen joints may also attract negative reactions from other children, preventing the affected child from participation in peer group activities. 

School Performance
Having juvenile arthritis has a large impact within the school society. Particular limitations can make going to school or participating in school activities difficult. With many types of arthritis levels of severity and length of flare-ups vary, meaning there may be days where the child has off, causing them to fall behind and further making school difficult. On days they do attend school they may be tired from a deprivation of sleep due to pain keeping them up at night, or feeling unwell because of the medications they are taking.

General Treatment
The first line of management for juvenile arthritis is drug treatment, which plays a major role. The aim is to control inflammation and relieve pain. Most children with juvenile arthritis will require medication at one time or other during the course of their illness. Along with medications children will be recommended to do a physiotherapy or hydrotherapy routine to strengthen muscles and keep joints flexible.

When you are diagnosed with long term illness, there in life comes new responsibilities and new things, whilst the old things are left behind. All people will at some point face a new responsibility or task, but it may not feel as significant. 
When I was diagnosed I left behind a life of sport. I can no longer be involved in sports, as I used to be as it causes me pain or further injuries. It hasn’t stopped my love for sports it has just given me the opportunity to pick up a new talent or hobby. 
Over five years ago, my sister was given a keyboard as a present, but in the last year or so, I began teaching myself and learning songs. I was interested in music as a subject in year 8 and 9, so figured I will continue at home. I sat down behind my sisters keyboard one afternoon playing random tunes. I looked up and saw the “100 Songs” on the top part of the keyboard, the first song being ‘My Heart Will Go On’ - Celine Dion. If you don’t know it’s the theme song from the movie ‘Titanic.’ I pressed play on the song and watched what keys to press and when. Soon I pressed pause and tried to copy what was just played before trying to play with the music. It took me about 2 days before I knew it off by heart and was ready to get my family together so I could preform what I had just learnt. 
Today however, mum brought me two old keyboard/organs so I could pursue my musical hobby. I picked my favourite out of the two and gave my little sister the other one. So even though I’ve had to reduce my participation in physical sports I still have music to fall back on. Playing means I can let go of feelings and play them through the keyboard. I have to admit I’m not overly good, but it is something I can do that doesn’t cause me immense pain. 
I guess my message tonight is that, when one door closes, another will open. 

Sleep
We all need sleep at some point during the day but we seem to always have those nights where you just can’t sleep. Welcome to my world! 
With arthritis comes pain and it’s uncomfortable, so after a long day or just a arthritic flare up sleep can be far away. No matter how much I just want to curl up in a ball and forget all the pain, I lay there awake for endless hours. I try hard to get comfortable but the pain over rides and I’m left still awake. When I finally get to sleep it can be easy to be disturbed or woken by further pain.
This is not always the case though, there are good nights when I can sleep soundly and fall asleep within minutes of going to bed. Those are the nights that I wish for because without sleep I feel like a walking zombie. 

Family, we all know how much they help us with our lives but when it comes to chronic illnesses they are everything. As I’m only in year eleven I rely on my parents for so much and without it I might not have made it this far. Suffering with hyper-mobility and arthritis is a strain not just on me but the whole family. Words cannot begin to describe what they do for me and how much I appreciate it. I may not show it all the time but they really do mean the world to me. 

My mum drives me to every doctor appointments and to camps and in general everywhere. Not only does she drive me everywhere she has to pay for my school fees, my medications and anything that is essential in my life. Sometimes I can’t believe how much she does for me, I don’t know where I would be without my mum. 
My dad apart from the fact that he works his butt off to get money in the house, he is there to make me laugh and support me through the tougher times. Yeah he might tell me to toughen up but I always know he is still there for me. And again I can’t imagine what life without my dad.
And last but not least is my little sister, sometimes I believe she doesn’t understand what I go through every day, but she understands completely, well as far as her mind can take her. She has done so much for me and I think I haven’t shown her enough appreciation. Without her though, there would be no life. She annoys me like crazy, yes, but I’m so used to it, I end up missing it when she is away. My favourite thing about my sister is that she is MY sister.

I love my whole family and I want to thank them for all they have done. It’s tough for me but my family feels the pressure too.

Arthritis Camp.. 
Arthritis camp has been an advantage of having hyper-mobility and juvenile arthritis. The whole arthritis camp thing, at first sounded horrible, especially the part where it’s in the holidays. I only heard about this camp in 2010 because my dr recommended it. I read through all the information and became keen to check it out. 
When the Monday came to go to camp, I was extremely excited! My mum, dropped me off and at first I didn’t want her to leave as I didn’t know anyone. But soon I got to know the girls I was bunking with and just stayed with them. That evening we did our first few activities and I got to know more about the other campers. Considering this was an arthritis camp everyone was respectful to the fact that each person had arthritis and that some of us may be in pain. 
As the week past it neared the night most of us were looking forward to, the disco. Each year on the thursday night there is a themed disco, this particular one was themed ‘pajama.’ Most of us got into our pj’s and hit the dance floor, even though we were pretty sore from the previous days, but who cares when your having fun, soon enough we would be going home. 
After the disco a small group of us, went to the dining hall to play UNO, our favourite game of the week. There were hissy fits from some of us and show offs from others, only because they kept winning. Our favourite line that was said during our last game of UNO was, “but they’re all red.” It was absolutely hilarious the way it was said! Even today I still laugh at it.
But the camp just had to end. 

My second camp had finally arrived after a whole year of anxious waiting. I just couldn’t wait to see all my new friends, some of us even had late or early birthday presents to give each other as we had become extremely close. Our activities last year were so fun and I had a blast once again. The only horrible memory was the charter trip to go whale watching. Nearly everyone in our arthritis camp group ended up throwing up, not very fun. The one we all thought should deserve an award was when one of the boys was pointing to a whale, that was extremely close to the boat and then, blahhhk. 
On the Thursday night, as usual, disco. The theme this time, halloween. Most of the campers got dressed up in a costume or put some crazy make-up on to look scary. Again we danced the night away, literally! It was the best time all camp! Sadly Friday came around, well the time where we had to pack everything up and get ready to leave. When my parents finally came to pick me up I said my goodbyes in hope that I would see everyone again next camp. 

Arthritis camp was designed to allow people with juvenile arthritis to come together and have fun. It is also there to help us get through tough times and learn about our condition. It is very fun and I’m so glad I went, making so many new friends, can’t wait for next October school holidays, CAMP!

When it comes to troubles and sadness there is always one person I can rely on. That one person is my friend, but she is more than my friend she is my metaphorical twin. This girly has helped me through everything in my life and words can’t describe how much it means to me. The amazing thing about our friendship is the fact that she too suffers with arthritis and we understand what its like, together moving forward. My friend was the only person who would understand how much pain I was in and how it really affects our daily life. She was the one to show me that having arthritis didn’t mean it was the end of the world, all we had to do was find another path through. Having her around means the world to me and I wouldn’t know what to do without her being there, but at the end of the day I know she will always be there for me, no matter how far away she is.