Showing posts from August, 2013

Arthritis Alone

I think we forget that sometimes it's okay to want to be alone. There are times we really need our own privacy, and it's a very natural thing. Contrary to popular belief, it's okay to need to step away from everyone and just be alone. I think with chronic pain, we need to understand that this feeling isn't depression or anxiety: it's natural. I'm an introvert; I get energy from being alone, rather than a extrovert who gets energy by being around others. There are lots times I prefer being alone, and one of those times tends to be when I'm in pain. Not always, but some of the time I find it easier to cope that way. Being alone allows me to enter my own world and focus on relaxing, which works very well. And of course, there are times a good laugh with a friend helps. When I'm particularly stiff, I like to be alone. Somehow it's easier to walk like a robot easier on my own than when I'm in class and I can feel eyes on me. In some ways although

Shopping Strength

The other day I was out shopping with my mum. Whilst walking out of one of the shops, a few people gave me a dirty look. I didn't know what that was for, because I hadn't even been looking at them. I looked myself up and down to see if it was because something was wrong with my clothes, but I didn't notice anything. Then it dawned on me: it was what I was carrying. My mum had heavy bags, and I was carrying much lighter ones. I felt like a jerk. It didn't take the dirty looks to make me feel like a bad person. I had always known how wrong it looked that an older person is carrying heavy bags whilst the young person they're with is carrying very light bags. I felt guilty about it for a long time, because it's really not fair to my mum. And I don't want it to be like that: I want to be able to carry the really heavy things. Noticing these things by  myself is guilt enough, but adding people staring is guilt to the infinite level. And then there's my mot

Children's Ward

Recently I came across an old television series that finished when I was little. It's called 'The Children's Ward' and (obviously)  takes place in the children's ward of a hospital. The drama followed the lives of doctors and nurses, as well as the young patients- especially the teenagers. The series was aimed at older children and teens. Recently, I began watching it. I've watched the first three seasons and I'm quite enjoying it. Though I do have some observations. Many of the diseases in the series are very real, and cover everything from aplastic anemia to alcoholism. However, children are perpetually in hospital, obviously for the sake of steady characters. I thought that was pretty funny. As the episodes went on, the series began to become personal. One character was in hospital for a long time, and I expected her to be very ill but it turns out she was hospitalised for psoriais. How about that? I've never heard of anyone spending weeks in hospit

Autoimmune Arthritis and the Jaw

Arthritis joint pain is one thing. I've lived with it long enough to know how to cope with it. I have found also easier to 'read' that pain: I can easier find what's increasing the pain and how I can help it. However, there is one joint that I find impossible to 'read,' and I have the worst time trying to find what's going to help it the most. My jaw. Most people will develop a click or pain in their jaw- or TMJ- at some point of their life. A lot of time, the jaw will heal itself with time and a little help. However, it's not that easy for others. There still isn't a lot of research about TMJ disorder and such, so the ways we treat it often have little scientific evidence to support it. Usually, prescribed treatment is a soft food diet, jaw excersises and stretches, splints, avoiding large jaw movements and overuse, and heat and cold therapy for six weeks. Many doctors are reluctant to go past this because it can be reversed. However, what's

Blood Draw Smiles

I don't mind getting needles much. I'm not scared of needles. I don't make a big deal about the little pain. I don't even loathe them at all. This isn't because I get blood tests somewhat often. This isn't because I give myself Enbrel shots twice a week. This isn't even because the pain of arthritis will always exceed a little poke. It's because of a boy with a lovely smile. A few months ago I was waiting in paediatric phlebotomy to have a blood test. The waiting room was empty when a woman pushing a little boy in a pram came in. The pram was packed with all sorts of things a mum would need on a busy day, but what was different was that there was medical equipment as well. I looked at the boy and despite being obviously ill, he wore a large smile. His mum was quite stressed out- having had a long day- and we got into a chat. She told me she really wasn't looking forward to her son's blood test. Not just because she couldn't bare to hear

Arthritis Perks

Let's face it, arthritis isn't a great thing. But there are things I like to call 'Arthritis Perks.' These are nice things that happened because I have arthritis. They definitely don't make up for having to deal with Arthur, but they certainly make things more tolerable- which is why they're 'perks' and not 'advantages.' Even though I did have a horrendous time with some gym teachers, there were some great ones. They let me participate as I could, and sometimes they'd come right up and say 'Elizabeth, you don't have to do this.' And I was alright with that! A few times when I was in swimming class, we had to swim laps across the pool. After each lap, you had to get out and do ten push ups and ten sit ups. The teachers just let me swim a little, and I was fine with that. Honestly, I had a hard getting out of the pool when I got tired, sit-ups were always painful unless I was on a soft surface and push-ups just aren't possib

Horrid Health Teacher

So we've heard about my horrible gym teachers (' Horrible Gym Class '). But what I haven't told you about is my horrid health teacher. We'll call her Miss A. Miss A was a new teacher, who had only just graduated the year before. We were the first class she had ever taught. And by the end of it, I prayed we would be the last. Although she started out quite nice, it quickly escalated. At this point in my life, I was diagnosed as just juvenile idiopathic arthritis. I was also taking Methotrexate and wasn't feeling well- I was always feeling sick and cold. Rest assured, I had no tolerance for nonsense. Unfortunately, that's all the class was. I would like to let you know right now that she knew I was sick. She knew all about my arthritis and getting shots and stuff. In one particular class, we were talking about drugs. The ones you inject, in particular. That's when Miss A informed us that the more often you have injections, the more likely you are to

"How Are You Doing?"

"How are you doing?" This is a question that doctors and nurses often ask. 'Same as normal'- my normal, not a healthy person's normal. It's just the life I got use to. It's this life where pain is constant, and that's accepted because we have no cure. When other people ask me this, sometimes I know they care. And that's great- I can't thank them enough and I'm very grateful to have them. I know that they want to hear good news, and sometimes I have it and I'm happy to share, but a lot of the time I don't. Unfortunately, it feels like they only want the good news, because otherwise everything is depressing. And I feel guilty that I can't give them the news that they want to hear, so I tell them 'It's alright.' It's not a lie because most of the time I can manage. Even then, I see the whole hearted smile fade a little bit because I didn't say 'I'm cured.' Others really don't care. And that

Anatomy of a Long Day

I am quite aware we all have our own struggles with chronic illnesses. But I'm sure we are not too unique in the case that we all have experienced a long day of medical care. Whether it's infusions that take several hours, test after test, bad news and more bad news, or appointment after appointment, I'm confident when I say we've all been there and have done that. Recently I had a very long medical day. I wrote down my emotions and thoughts as the day went on so I could share with you later. 7.00 am, I am not pleased one bit. I may be up and out at this hour most of the time, but when it's for anything but work or school, I'm a zombie. Even then, I'm kind of the walking dead. The train had better not be late otherwise my whole day will be thrown off. 7.38 am, I love trains. Any time I don't have to drive is a good time. Just sit back, relax and watch the world go by. 8.29 am, The little cafe near the hospital has the best eggs ever. That and a gre

'Thank You's' for Everyone

Everyday, people everywhere make a difference in the lives of people with chronic illnesses. Even people you only encounter once for a short time can make a huge difference. What's wonderful is when people who don't have to care, do care. Today,  I'd like to call them out and thank them. Dear Mrs. W, Thank you for really taking everything I was going through into consideration when you assigned class seats. I really appreciated sitting next to the heater, in the back where no one would bother me and where I could stretch out. Dear R, Even though we're just school friends, thanks for really caring when you found out I'm chronically ill.  I was so touched at how concerned you got the first time, and all the times you become concerned now. Dear Rollercoaster Attendant, Thanks for releasing the restraint for me when I couldn't do it like everyone else. I know it's a tedious job, so thanks for not appearing annoyed at all. And a huge thanks for when y

Exploitation of Health

Today I saw a picture of a baby who was born anencephalic. That's when the child's skull does not completely develop whilst in the womb. The child is born with a great deal of their head 'gone.' They do not survive longer than a few hours after birth. This particular child passed peacefully hours after his birth, and I know this because I've read an interview his family gave. I saw many of the pictures they took of him. Unfortunately, when I saw his picture it was not for a good reason. Instead, someone had said that he was in a car crash and his family could not pay for his surgery. A well meaning friend of mine had shared the picture, as the caption said if it was shared money would be donated to the cause. It pained me to see his image exploited, as well as well meaning people being tricked into sharing it. This disgusted me. I absolutely hate when people exploit one another. But to exploit the poor infant's health? That's very low. I'm not sure w

Born Into Arthritis

I've understood that people are not supposed to experience pain for a long time. I knew the concept at the age of eight, and understood completely by age ten. I know that sounds a bit impossible, but I've had arthritis since I was a baby and I grew up in pain. I didn't know that wasn't right. It's not that I wasn't in pain, it's that I assumed everyone felt the same. When no one else complained or talked about it, I assumed I wasn't supposed to either. Despite being stiff and limping, no one really asked me if I was in pain. I just thought it was completely normal until I flared when I was eight. All of a sudden, it was okay if I didn't want to run about like the others. The adults would tell the children, "Elizabeth's hips hurt," and I would get to sit and play my own games. It was amazing, but I didn't truly think my pain was out of the ordinary until I got a bit older. To this day, I still forget. I still assume everyone on the

"I'm Glad You Have Arthritis."

Around this time last year, I was very close with someone. We've since have gone our separate ways. But whilst I was with this person, I heard some interesting things. There is one conversation in particular that I will probably never forget. It wasn't exactly 'kind,' for me at least. These are several quotes from that conversation that still stand bright in my memory. "I'm kind of glad you have arthritis..." Excuse me?! "... Because it feels like I'm helping someone." Am I a charity or something? Is that the only reason they were friends with me, because it was like community service? "I just want to go out and help people, which is why I feel so good about helping you: I'm making a difference." Are you? I didn't notice. Especially the time I really needed assistance in carrying a heavy object, but did it alone (with lots of struggle). Or when I couldn't unlock the restraint on a roller coaster and the atten