I Don't Want to be Scared to Create Anymore!

I hate that lately I've been too scared and self-conscious to create and share my work freely. I feel like I can't express myself easily without art, craft and writing - and being unable to create makes me feel idle, bored and depressed. 

The trouble started about seven months ago, when I had a terrible reaction to heart medication that had been prescribed by my cardiologist. The pills were beta-blockers, and were supposed to help with POTS and SVT, however, taking them almost resulted in me losing my mind. 

I was warned that there would be side effects, but I was told they would subside within a week or two. Only they didn't subside, and I became too out-of-it to realize that the medication was responsible for the way I was feeling. Among other things, I had repetitive ultra-realistic nightmares of my own death (which I would then re-experience as flashbacks or dissociative episodes during the day), and an overwhelming fear of my own imminent death would suddenly come over me at random times. I had panic attacks that made my whole body numb, and severe anxiety that I couldn't shake. It was the worst thing that I have ever experienced in my life. 

Anyway, I have blogged about the side effects I experienced on beta blockers before. To make the long story short, I ended up stopping taking the medication. I figured the heart problems could not be worse than the side effects of the tablets. After stopping the medication, my several-a-day panic attacks became once-a-week, then once-in-a-while. I have now not had a panic attack in several months! All of my side effect symptoms improved but for some residual anxiety. 

This residual anxiety is still a problem, because since then, I have felt uneasy creating art and craft, and I feel especially nervous about sharing my creations. Thoughts of having it judged negatively by my friends or by those I admire trigger my anxiety to the point where I now find myself sharing very little at all. 

I used to hate the way that society made other people scared to be creative. It made me sad when people would forewarn when sharing things they had drawn or made, using sentences like: "I'm not an artist, but...". I felt like they were somehow trying to distance themselves from their creation so that others judgments couldn't hurt them, and it made me sad that people would feel that way. However, lately, I have caught myself doing exactly this! It somehow feels like other people's opinions matter more now. I think I have lost the resilience that I used to have before my experiences with anxiety and the other side effects that my heart tablets caused. 

I keep wondering how I can get back to being how I was before I took those awful pills, and how I can stop caring so much about what other people think of me and my work. It seems that this is not an easy task. I used to focus on the fact that the worth of creative works is subjective and that no matter how many people didn't like what I made, somewhere, someone would - even if that someone was me!

I suppose that like getting rid of the panic attacks and other symptoms, getting rid of this residual anxiety will take time. I'm sure that it won't disappear if I hide my creativity, though. So wish me luck as I embark on the next leg of my journey to beat anxiety. It won't be easy. but I am sure it will be worth it.

~Ad =)

Toe Woes!

On Sunday, I clumsily kicked the sink in our bathroom and stubbed two of my toes. My middle toe took the brunt of the force, and my second toe hit it as well. As soon as I'd done it, my middle toe went completely numb. I was a little worried, because I had hit it really hard, and numbness didn't seem like a good sign - but I was happy it wasn't hurting, and I had a lot to do - so I pretty much ignored it. To tell the truth, I was probably more upset that I had chipped my rainbow nail polish! 

Sunday, just after the toe met the sink/its foe.

The second and middle toes started to bruise pretty much straight away - in a line where they had hit the sink - but it wasn't painful. Apart from a very dull ache, I couldn't feel it at all! It was still numb.

That night, it was still completely numb. I figured I must have hurt the nerve in it somehow. It took until yesterday to actually gain the feeling back in the toe - and it started to REALLY HURT! 

Sunday night. Ignore the washing in the background.

Given that I dislocate lots of bones, and take daily pain killers, I guess the pain could have been masked a bit at first. Last night, however, it became unbearable, and I ended up at the local hospital. 

The toe on Tuesday/yesterday.

I felt a little bit embarrassed, and worried that I might have been wasting their time, but they were really nice and sympathetic. The doctor examined the offending toes, and my foot - and made the weird discovery that the bottom of the middle of my foot was still numb. I could not feel him touching the middle at all - and the area either side was quite tingly! 

He decided that I had to have x-rays. I didn't have to wait very long at all! A specialist is going to double check the x-ray today, and call if there is a problem, but the doctor could see no obvious fractures.

The toe - all splinted and comfy!

The doctor splinted the toe of woe with bits of metal and foam, and told me that I can't walk on it -at all- for two whole weeks! After two weeks, I have to get it checked again. Two weeks seems like a long time for a toe, but I will do as he says. Hopefully the weird nerve numbness will have healed by then, and the pain and swelling will have settled down =D. I was able to sleep last night, as it was much more comfortable with the splint on it - so I am happy! 

~Ad =)

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UPDATE:

After a week of immobilization, rest and elevation, some of the darker bruising had started to fade, and more bruising started to come out on my foot. 

After a week in a splint.

By the weekend, I still couldn't walk on my toes (the doctor said not to, but the pain was just too bad if I tried to touch them to the floor!) 

At the weekend. 

I managed to get outside (with crutches) for Australia Day lunch, though =).

Relaxing in the sunshine on Australia Day!

It has been a week and a half now since I went to the hospital. My toes are looking and feeling much better! They aren't keeping me awake at night anymore, and I'm not taking extra pain medication for them. Hopefully by next week I will be able to walk around with them on the floor again! =D

~Ad =) 

Carols by candlelight!

Last night, my family and I went to our local carols by candlelight. It was so awesome to get out of the house, and I had so much fun! =D 

Me!

My jingle bell bracelets!

My candle, song book and snacks! 

I can't really join in with the singing anymore because my jaw is too unstable, but it was nice to listen and watch. It was relaxing to watch the sky change as the sun went down... 

...and to watch the candle flames dance =). I lit my candle early - before it was completely dark - because I wanted to make the most of it. Ellenya said all candles should have names - so mine became known as Candy the Friendly Candle! 

My candle!

My candle with some snacks! 

On the way out, we got some fairy floss... just a small serving... 

LOL!

To top off our evening, on the way home, we saw some Christmas lights! I tried to snap some pictures through the windows of the car, but they didn't turn out too well. One of the houses had a rainbow on the roof - it was awesome =D. 

I love this time of year!

~Ad =)

Baby blackbirds!

I love this time of year =D. There are lots of baby birds around our garden, and I can watch them from the windows! I've managed to grab some photos and videos through the windows over the last few weeks:

This video is of a nest outside my parents' bedroom window:

And this little guy is from another nest near our back sliding door!

A baby blackbird on a pot in our backyard!

~AmazinAdrielle =)

A Ridiculous 'Inspirational' Quote

Inspirational quotes - the kind that are supposed to affirm that each and every one of us is completely in control of our own destiny and our own happiness, and that if we work constantly at changing ourselves, we can be better human beings. People love to tweet and retweet these kinds of things. They even print them on real-life vases, fridge magnets, coffee mugs, and a host of other gift-shop objects.

I, however, am generally not a fan of such quotes. This is mostly because I don't think that happiness is something that can be taught - only felt, and naive as I am in the ways of the world, even I know that people are frequently placed in situations over which they have little or no control. I tend to try to take such quotes as being well-intended, but unfollow people who continually tweet or retweet them.

Last night, however, I saw a Tweet that really bugged me:

The only disability in life is a bad attitude. -Scott Hamilton

I know that this was supposed to be an empowering or inspiring quote, but seeing it on my timeline really irked me. The only disability in life is a bad attitude? Really? I don't feel that this true at all. In fact, I consider the claim to be utterly ridiculous. Obviously, disability has many causes, and comes in many forms. It is upsetting to think that others have so little understanding of the challenges that people with disabilities face each day.

I am certainly not disabled solely by my attitude. Rather, the barriers I face in participating in social activities, romance, work, study, community, sporting and cultural activities are caused by a number of interrelated factors. These include the symptoms of a complex collection of genetic and acquired illnesses, and by the lack of access I have to services and resources (such as money).  

It is insulting that some people believe the challenges that people like myself face are somehow self-imposed. Do these people really believe that all people with disabilities have a "bad attitude"? Or do people with disabilities that do not have "bad attitudes" somehow also not have disabilities in their eyes? It doesn't make sense to me. Would we suddenly and miraculously no longer be disabled if we worked hard and our changed our attitudes? If only it was that easy. 

Unfortunately, real-life doesn't work that way. Disability can happen to anyone, at any time. I understand that people want to think that it won't happen to them. They want to feel as though maintaining a positive attitude will somehow make their problems disappear, and they want to believe that nothing in life is outside of their control, but sadly this is not true.

I believe that I (like most of the other people I know who have disabilities) usually maintain a very positive attitude. This helps to keep me sane, and gives me resilience against the daily challenges I face. I am not disabled by a bad attitude. I have a positive attitude, and a disability. 

~AmazinAdrielle 

Lego CSI Movie - Pre-Production

Elle and I have started with the pre-production phase of our stop motion Lego CSI movie. Research, planning, and script writing has been happening, and we are about to start finalizing the story line and script so that we can start working out shots and storyboarding our movie.

As we have never done anything on this scale before, we are planning on doing some pre-production shooting to test out some of our ideas using stop motion - just to see if things are going to work the way that we intend them to. Hopefully, everything will go well!

Some of the preliminary animation for our film has been done already, like the fingerprint analysis sequence that will appear on computer screens in the background of one of our scenes. It is not a brilliant piece of video on its own - but once it is integrated into the background, we are hoping it should work well.



We may be ambitious, having only done very short/small projects in the past, but we have been writing plays and playing with Lego since we were kids, and are determined to give this a go!

The finished product is obviously a long way off, but it is exciting to be starting the journey.

~Ad =)

Side effects & mental health issues update!

Hi! 

I have been very absent online lately, and I thought I should give you all a quick update as to why. Unfortunately, I tend to ramble on - so this post might not actually be quick... lol! As a bit of background info - for anyone who doesn't know me well, I'm 27 years old, and have been chronically ill most of my life. I have been disabled for almost 10 years due to severe Ehlers-Danlos syndrome, fibromyalgia, osteoarthritis and chronic fatigue syndrome. If I don't concentrate on keeping my muscles tense, I dislocate bones. It is kind of scary, and hurts a lot. My personal record for most joint dislocations in a single day is 29 - and gets worse every year. 

When I first learned that my conditions were not going to go away, I didn't cope very well. I started off in complete denial, being utterly convinced that the doctors and specialists were wrong. Then, things got to the stage where I couldn't deny it anymore - and I ended up with major depression. With treatment, things got better, though, and I eventually adapted to my new restricted life and returned to my regular happy self. However, a lot had changed. I'd gone from being extremely active, training hours every day in acrobatics, singing, being involved in the community, making art and craft, dancing, enjoying bush walking, etc. to being stuck in bed, asleep most of the time, in chronic pain, unable to draw or paint or do anything requiring movement, and constantly sick. I had to find new ways to occupy my mind when my body was so unwilling - and this wasn't easy with my fatigue, memory and concentration problems. 

I have never had a paid job, although I have always volunteered when well enough to do so. I continued volunteering after I became disabled, and especially enjoyed sorting public donations for the St. Vincent de Paul Society before I was forced to give it up due to my health. Nowadays I mainly volunteer online, as I am usually unable to leave the house - but I like to feel useful. 

I am proud of the fact that I managed to study and complete my Bachelor of Behavioural Science degree at university while unwell - attending for a few hours here and there, and working mostly from home, watching lectures on DVD. I got great marks, and ended up being invited into the Golden Key International Honour Society. At the end of my three year course, I was invited to do honours year in the city. Unfortunately, I couldn't live without my carer, and attending uni full-time wasn't an option. I was pretty devastated to have to decline the offer. 

During my time as a student, I discovered computers and online games - and through those, I later discovered digital art. It was far less taxing on my joints to draw using computer, and I really enjoyed it. I ended up studying art and animation online (after taking a year off during an especially bad patch of health). I excelled in that course as well - but once again - to continue in that line of study, I needed to be able to study full or part-time, and my health problems just wouldn't allow it. I am happy to have had my art feature in online games, and to have won prizes here and there for art, animation, craft and photography (but I'll admit - lately I feel like my dreams to become an artist are slipping away from me as well). 

Anyway, what I am trying to say is that despite all I felt I had lost, there seemed to also be many things that I had gained and achieved. I still felt happy and had hope that there was still a lot that I could do in my life - no matter how bad my illness and disability became. 

However, my outlook changed considerably earlier this year, when I was put on heart medication that didn't agree with me. I spent around a month having constant vivid nightmares, in which I repeatedly died (in a variety of ways). I suffered panic attacks, paralysis, dissociative episodes, flashbacks, severe anxiety and invasive abnormal thoughts centered around the fact that I could die at any time. I was attacked by my own thoughts at random moments - reminding me that I could be dead. At times, I felt that the world around me might not actually be real, and that I could have already gone insane - and at other times, it felt like nothing really mattered in the scheme of things - because one day everyone would be dead. Then I would return to lucidity, and panic that I was losing my mind! 

The first doctor I went to fobbed me off - talking over me each time I tried to speak. She told me that this wasn't her field of expertise (yes - how dare I expect a doctor to know how to practice medicine?). By that stage, I was desperate. I was too scared to sleep, and was losing touch with reality. If I had felt I could wait, I wouldn't have gone to see her - but she was the only doctor available! She told me to go and see another doctor, and charged me $70 for the effort. (I would have complained about her - but she is the practice owner, and thus, she would be handling the complaint herself - which seems wrong.)

Reasoning that my heart issues (for which the medication had been described) couldn't be worse than the side effects I was experiencing, I stopped the medication. This made an immediate difference. The nightmares and panic attacks disappeared - but the anxiety remained. For months afterwards, I seemed to keep thinking about death and things that I never used to think about before. I felt like I was running out of time - like I would never find love, or live independently, or have my own house, or kids, or job, or friends. I wanted to feel like I'd used to feel - like there was always a way - like there was always hope. 

My regular doctor was not happy when I told her what the other doctor had done (when I went to her a fortnight later). She was concerned about me, and made sure that I was okay - making notes to follow up on these issues on my next visit. We decided that if I was still having problems when she next saw me, I would go to see a specialist (either a psychiatrist or psychologist). This made me feel reassured that something could be done, and that I wouldn't be ignored and left to go insane alone. By the next visit, though, I was feeling a lot better! The awful side effects had worn off, and I was almost rid of the mild residual anxiety that they had left me with.

I am getting back towards my old self as time goes on, which is awesome! At the moment, I'm still having some emotional ups and downs, but I am doing really well physically. I'm spending about a third to half of most days sitting up - which is really good for me. I have a new back brace which prevents my ribs from subluxing and dislocating, and I'm managing to get out of the house in my wheelchair or on my scooter an average of twice a month - which is the best I've been in ages! I can focus enough to watch TV shows and follow most of the story line (although I still get a bit mixed up with characters that look similar), and I've been able to make some mosaics. I have even walked outside twice without my crutch - which is a major achievement. Life is getting much better =). 

I really want to thank everyone who has been so supportive, understanding and incredibly nice to me during the past few months when I have been so absent. I am sorry for the delay in replying to messages and tweets! I am hoping I will continue to improve, and that I will be around more and more as that happens. It seems like I am well on the way to recovering from the heart medication setback, and I'm really looking forward to getting back to my old self =). 

~ Adrielle =)