Saturday, 26 July 2014

When I Lost My Voice

People from my school would say I'm very quiet. I tried not to talk too much because I was afraid that I would come off as some loser. When I spoke, my voice would crack and shake, I'd trip on my words and I would turn red in embarrassment. Speaking tended to be humiliating, so I stopped. I was more open when I was younger, but a few years ago when a class burst into laughter after I spoke, I stopped completely. I didn't want to be judged because I wasn't an eloquent speaker, so I resorted to not talking very much. My exception was for occasional one liners that would get some laughter and boost my confidence. I loved when they laughed, so I would try to open up more to be funny. Even then, there were times that only got me picked on so I would retreat and picked my battles with more care. The only way people seemed to like me is if I didn't have a voice, and I accepted it.

It was in January that an academic society I belong to began preparing to induct several new members. My society leader approached me, and asked me to speak at our ceremony. I was very apprehensive- though it wasn't a long speech, it would be said in front of many of my fellow peers. But I accepted anyway. I practiced for a very long time, and at rehearsals I was made to repeat and correct myself despite no one else being guided as much. I didn't pay much attention to anyone else's speeches, because I was too busy preparing myself for mine.

On the night of the induction ceremony, everyone was dressed primly and properly, and donned ceremonial robes and shawls (I know, it sounds like a cult). Once the ceremony began, I waited for my turn to speak. Once it was my moment, I stood straight and tall. I looked at the audience, took my time and spoke loud. I even tried to sound confident. After I had finished, I realised I did a good job and that I could speak if I had confidence in myself. Additionally, I listened to the speeches of my peers: many stumbled, stuttered, rushed and blushed (hey, that rhymed!). Maybe it wasn't just me.

I was approached by several people afterward and congratulated on a speech well spoken. I beamed. But my favourite thing I heard was, "Elizabeth, you have a beautiful voice: I wish I would hear it more." After being told my voice was ugly when I was young and then convincing myself of it as I grew older, it Was exactly what I needed to break my silence.

Polite silence is a way of life. I'm only just beginning to get my voice back, though I relapse back into  being quiet sometimes. There are lots of times I feel humiliated because I talked more than I should have. I apologise quite a lot for talking. But I realise that the most powerful thing a person has is their voice, and taking it away leaves one with very little.

Saturday, 12 July 2014

Dear Jenni

Dear Jenni,

I've read your blog post (found here) a few times now, and though I have not commented on it, I was deeply troubled by it. I hope you do not mind my sharing of your post in my blog, as well as my open response: I do this because the things you wrote about the nonexistent care you have received troubles me.

Being without a rheumatologist for 17 months, denied treatments and not receiving hydrotherapy that was promised to you is completely unacceptable. Although getting appointments and such can take an awfully long time, the amounts of time you describe is not only ridiculous- it is very dangerous. Autoimmune diseases of any sort are an emergency- yet, you are slipping through the system, left out and utterly walked on. This is not health care and you deserve far better care. Due to my psoriatic arthritis, I go to  see my rheumatologist once a month- sometimes every two months if I'm doing particularly well. I take Enbrel, which I only found worked after trying medicines that controlled the disease and not just the pain. I've gotten all the scans I've needed, had surgical consults and more. You deserve just the same quality of care and attention.

I'm not particularly sure of what you should do, to be completely honest. Perhaps waiting for a new rheumatologist is the only thing you can do for right now. But it doesn't feel like it should be left at that- it is too passive a route. That is exactly why I share my reaction. Normally I'm pretty private about some things, but my anger for your lack of care will not be: This needs to be shared. There needs to be attention called to this problem. I hope by sharing this, more can be informed about this problem with healthcare that affects so many others as well.

Don't stop trying.

Sunday, 29 June 2014

Roller Rules

A good portion of my year so far has been spent at amusement parks. I go so often that I have already paid off my annual pass to my favourite one. I thought it might be a nice idea to share some amusement park wisdom as the summer has begun.

Roller coasters affect people different. I can go on rides with large hills and loops- actually those are one of my favourite kind. Somehow the forces don't bother my neck or back, but they do for others. Don't do anything you don't feel comfortable with, but you do have to try things to know.

Rides that go backwards, especially upside down, will put a lot of pressure on your neck and back. I don't recommend them if you have any type of problems with your neck, back or shoulders. You would be surprised how much force puts pressure on you as you go backwards whilst upside down: I was very afraid I would get a neck flare right after I rode my first and last backwards and upside down coaster.

Be wary of rides that have no neck support, as your head can be jolted. For example, I went on a coaster with no next support that was wilder than expected. There were times my head was forced down and I could not hold it straight, and at least twice it got jolted up violently. I heard weird cracking each time. I don't go on that ride anymore incase I break my neck. However this applies to no other rides. Again, use your own judgement on rides.

Go during less crowded days, which in most cases is any day other than Saturday, Sunday or bank holidays. That way you can take your time and queues will not be as long, so you are not exerting too much energy at once. Take breaks, even when you feel good. I recommend leaving the park for lunch so you have time to relax quietly.

Wear proper shoes. If you have heel pain, wear heel cups in your shoes to cushion the impact of walking. Rent a wheelchair if you need it, and do not be ashamed of using it. You have the right to sit when you are not feeling well and you have the right to enjoy the park. Everyone can mind their own business. I use wheelchairs in certain amusement parks and on certain days and I have just as much fun, if not more because I don't have to tire myself to keep up with everyone else.

You don't have to use all your spoons to have fun. All you really need is good company, good food and a camera. Just the environment is uplifting.  I've more fun having an ice cream and people watching than being miserable waiting for a ride.

Tuesday, 17 June 2014

Becoming Ill

Recently I was asked (by the lovely Ms. Rainbow) if since I got arthritis at a young age, did I have a transition period of getting sick or did I always accept?

In all honesty, it was a very long, ongoing transition. When I was very little, I wasn't 'normal' like other kids were: I tired very quickly, my leg dragged, I was very stiff and I always remembered being achy. But I didn't know that wasn't normal until I was eight years old. At eight years, I had what I still call the 'worst flare of my life.' I could barely move and was in hospital for about a week and a half (I'm still a little fuzzy about what went on at that point). I had an extremely high fever and severe hip pain, and all my scans showed inflamed fluid on my joint. Unfortunately 'the greatest children's hospital in the nation' sent me home and said it was viral arthritis, and never followed up. Afterward, my joint pain was much worse in my hips- in fact, they were the only joints that bothered me.

  After that flare, I felt like a fake when I didn't feel good or didn't want to play because I didn't know what was wrong. I was seen by more doctors at 'the greatest childrens hospital in the nation,' and was told it was growing pains and would go away if I ran and played like other kids, and when I was ten years old I was given a diagnosis of tendonitis. Even though I felt sick, I wasn't 'allowed' to be sick and rest and be excused for things because I didn't have a name for it. I felt so confused. I use to Google my symptoms to try and find out what was wrong, and even I knew at age ten that tendonitis wasn't what was going on. I also began to get worse- now my knees and ankles weren't feeling so good.

I was twelve when a miracle occurred. After a gym class that left me in tears from pain and humiliation from a gym teacher who made me run and pointed out my swollen, knocked knees to the class, I was refered to another hospital. I saw an orthopaedic specialist who ran a battery of tests and I was immediately sent to a rheumatologist. It was amazing how for the first time in my life, someone other than my mum understood I was in pain. After I began seeing the rheumatologist, my life  flipped. The medications I began taking made me violently ill. I may not have felt good all of the time before, but I became sick almost all the time. By the summer, I had lost all my friends because I was no longer able to keep up with them. All of a sudden, I would never be considered healthy. Though I was glad I was being treated, nothing in my life was the same.

It was the beginning of the next school year I was diagnosed as JIA and started methotrexate. I did not feel well on methotrexate by any means, and I lived in a foggy, cold and lonely world. The diagnosis confirmed what we had thought for years, but now it was real. I felt hopeless. It was that year I would come to terms with my diagnosis, but it did take a few months. Feeling horrible and knowing JIA is chronic, I couldn't imagine I would have to live miserably for all my life. But changing rheumatologists made it easier: I was taken off of methotrexate and began to make friends with other chronically ill kids. I felt better. He also correctly identified my arthritis: Juvenile psoriatic arthritis.

My transition was miserable because I felt powerless in what happened next. I did not get to control what happened next, but I also didn't get a say in my medicine or how it affected me. My diagnosis went on for a very long time, and it took a year to really feel okay again. Even though I never felt right and from age eight on I knew I was sick, I only found the truth when I was about twelve years old: I was chronically ill and there is no magic cure. But I made it. Years later, my spine and shoulders are affected, My kidneys aren't so great, my fingers turn blue in cold, and a whole slew of other I problems. I've coped. It's hard when it's first happening, but you make it work.

Friday, 13 June 2014

"If You Have Arthritis, How Can You Walk?"

"If you actually have arthritis, doesn't it hurt to walk?"

That was how the conversation went. I didn't know it at the time, but I had opened up a Pandora's box.

Someone ( I'm not disclosing this persons name or relation to me) had just asked me about having arthritis: They heard me mentioning it to someone else. I'm usually honest about my diagnosis, so I told them I live with arthritis caused by the immune system. They asked how I deal with it, so I told them I take immunosuppressants and try to stay active. This person is very pushy and nosy, and I suspect a bit overdramatic. They continued to question me, as if making me prove something. They said, "so the pain isn't all the time?" And I said, "No, it's constant."

I was asked, "but if you actually have arthritis, doesn't it hurt to walk?" And I said, "Yes."

"Then why...?"

"Because either I walk or I live in a wheelchair."

This person questioned my own disease. Just because I'm not in a wheelchair. This person became increasingly aggravated and suspicious as they pressed me for questions. I ended it promptly after them insisting if I had arthritis, I shouldn't be able to walk.

I wish it ended there. I repeatedly had to see this person. Although they never pressed me for more questions, something never seemed quite right. Like when this person informed the group I was speaking with that they weren't feeling very good and then proceeded to eat a handful of vitamins and drink a glass of those immune system boosters. Staring right at me.  They then santized their hands ten times in five minutes. And when someone had a headache, that person suggested it may be a migraine caused by gluten intolerance and continued to inform everyone that gluten is responsible for a lot of 'immune system disabilities.' And stared at me the entire time they explained.

Another time, they really made a statement. This person explained they had a headache to whoever would listen. When this person had to sit in the same room as me, they proceeded to pull a surgical mask and wore it. When they handled some papers from me, they wore rubber gloves. Seriously?

I've had gym teachers who relentlessly tore me down for my deformities, inability to preform and poor performance in gentle activities. I've had teachers insist I would grow up to become addicted to drugs because I required constant injections and looked horrible (from Methotrexate). I've been given dirty looks for needed a wheelchair when I look fine. There have been numerous times people have picked on me for being chronically ill. But nothing that has made me laugh so much.

Even though I am well aware this person is picking on me, I really can't help but laugh. Someone here might even say this person is very concerned for my well being, but you know when someone is helping and when someone is just being silly. They're being silly and it's made them very made that I've never looked insulted.

Sometimes I wonder if this is really ignorance, or just a severe case of jealousy. From a person well over twice my age.

Tuesday, 3 June 2014

What They Never Mention

What doctors always forget to say to you when you get a diagnosis is, "congratulations, it's a chronic illness." They never mention how ongoing many diseases really are and just focus on the short term. It's often up to you to learn about what's going on inside of you, and trust me when I tell you Google is a scary place to go, especially at one am when you're panicked about what's happening. A word of advice: Google will stop being your friend if you are A)panicked, B) tired, or C) a horrible combination of both.

 A lot of people don't realise that they have chronic illnesses, and become frustrated when they are not cured overnight or at least have sufficent symptom relief in the matter of a few weeks. When it comes to months of little to no improvement or even further progression, people can become agitated, anxious and downright depressed. It's a hard pill to swallow, which is why many people with chronic illnesses go through the five stages of grief (some never reaching the last stage or going through the same two or three stages repeatedly).

Believe it or not, people who have been chronically ill for years- even those chronically ill for most of their life- still get frustrated, just as much as they did in the beginning when they did not improve dramatically with treatments. They too get angry and depressed. Doctors continually dismiss them, despite having a proper diagnosis, just as they would dismiss a person with no diagnosis who's symptoms don't seem "too bad." They are still stressed by doctor appointments, tests and new medicines. And they are tired too.

I'm not going to lie to you and say it always gets easier. Sometimes it does get easier: There's always the possibility of treatments that control symptoms very well and even remission. For others, it doesn't. But in the mean time it's hard. It's so hard that it might make you question why you keep trying. Chronically ill people seem prone to having bad luck as well. That's all it is: You didn't do anything to cause anything. You did nothing wrong. You've got to keep trying and fighting against that bad luck.

Life isn't fair. It's really not for anyone, even though it can certainly seem that life is having a go at you and no one else. It's not going to be easy, I promise you that. I will bet my right hand that you will consider giving up at least once. It's not something to be ashamed of either. Trust me when I tell you that I've considered giving everything up, that a life spent on my couch isn't so bad. But then I remember how much work I've put into life, and how much farther I can go if I keep at it. So I sigh, give my pillow one last hug and try my best. It doesn't really matter if life goes to plan anyway, it just matters if you give it a good try.

Wednesday, 28 May 2014

Bed View

Some nights I go to bed and promise myself that in the morning I am going to get up and go out and get things done. But I often break that promise. There are mornings on my days off that I do nothing but lie in bed. It feels very lazy, and sometimes I feel guilty. But it's also very peaceful. I can hear the day starting all around me. I feel my joints gently throb. Pain isn't always something that makes you suffer. In fact, it can be the only thing that lets you know you are alive when the world is cold and numb. From my bed I can look out the window and see the world go by. It doesn't go by without me, though it can feel it. I'm still a part of it, but today I choice to watch peacefully as I rest so later I can join outside.

People often call me a homebody. However, this is far from true: I really love to be out and about. There are times I dread coming home, wishing I had time for one last adventure. But it would be no fair to my body to overwork it. I need to rest. People don't realise I'm exhausted a good amount of the time and drag, but it doesn't mean I want to stay home. I want to be out experiencing things. Even just watching the world.

I am a lot of the adjectives people use to describe me. I am lazy- after a long day, all I want to do is lie down. It's my want that wins, not my knowledge that I am capable of going on to do more. I am a homebody; if you're home enough, that is what you become. Your desires do not change that. I am very quiet, though I feel like I never shut up: I let people forget me, and even when I call for them I never raise my voice to get their attention. But I know one thing: I am not disconnected. I am just as part of the world when I watch from bed. Taking care of yourself is not isolating yourself. It's being active in your life.