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 =)
