Oh hai 2016, welcome! I am very pleased to meet you.
I love the promise of a new year, it’s like a fresh start, a physical line drawn between one time and another where everything that happened over the previous 365 days can magically (theoretically) be forgotten, if you so wish. A new year brings endless possibilities if you want it to, or it could continue on in the same, comfortable, reliable fashion the previous year/s has. Do you have great plans for this new year? Have you made any resolutions? I like the idea of starting the new year with intent though, not promises to myself that I will never keep or plans and resolutions that are not so realistic – just the intent to have a better year than last year, to keep going, to keep improving, keep moving and be mindful of where I am and what I am doing. To keep doing the things I enjoy, remember to do the things I need to and should do and to work on helping my body be the best it can with everything going on.
Last year was tough, I’m not going to lie and my blog posts became few and few between. But it also had some very high points sprinkled through that toughness to break it up a bit, a bit of glitter in the pile of poo that was 2015. My health reached an all-time low, which made blogging regularly a bit tricky (sorry about that), and it meant that my vow to sew more than I bought went out the window in spectacular fashion – oops, sorry bank account! Lets not beat around the bush, 2015 nearly broke me, it came very close and maybe did a little. I found myself in a dark place that I haven’t been in for a long time and I had a lot of trouble climbing back out of it. I had a glimpse of my future without a change in treatment and it wasn’t good, it consisted of regular hospital admissions for intravenous antibiotics and declining overall health. It consisted of more serious mobility aids than my good old trusty cane, even less crafting time and more friendships lost due to lack of understanding of my situation, my life and my needs. I saw my possible future, the direction my health was heading and it terrified me. But finally something wonderful happened.
This year, this month, marks 5 years since I got sick again and had to stop working. This Easter marks 12 years since I first became consistently, chronically ill. It doesn’t get easier to come to terms with each year, you never get used to it. When things plod on in the same direction and nothing changes, or they get worse, it’s hard to find inspiration, hope and the energy to keep going. The years since I got sick have seen a slow but steady decline in my health with no real improvement. Until last year. But I had to become sicker than I ever have to get there.
Luck or fate or what have you is all a matter of being in the right place at the right time, of meeting or knowing the right person, crossing the right street etc etc and after pushing for 5 years I finally found the right person – an immunologist who decided to run the right tests and found out exactly what was wrong with my immune system. Not only that, he was able to get me treatment. Treatment that is not without risks and complications but treatment that has seen the first dependable upward trend in my health in the last 5 years. I guess that’s what happens when your body starts being able to function more normally! I wrote more extensively about this treatment and my immune condition in a previous post so I won’t go into a lot of detail, but I will say thank you to everyone who has ever donated blood and blood products, the gift that you give is priceless. Hopefully it means I can leave the really sick part of my life behind and move on to a more manageable level of health and achieve more things I want to achieve.
Last year also left behind a very toxic friendship, well two actually, and while I was hugely upset about the way it happened, I know it was a good thing for me because I don’t need people in my life who don’t enrich it and make me feel worse or guilty for being in the situation I am in, a situation I have no control over. People who make it harder for me to enjoy the time I can spend with friends and don’t try to work around the things I have to work around but then complain that I don’t try hard enough. People who are incapable of understanding a life that is so very different to their own. It made me really think about what I want from friendships, what I deserve and what I am prepared to put up with – the answer to all 3 questions was ‘not that!’
But last year helped me find my voice again, through this blog and through the write-ability program at Writers Victoria I rediscovered my love for producing, not just reading, the written word. I had opportunities to meet other writers with disability, some of whom are very active in the disability community and are wonderful advocates. I also had the opportunity to read pieces of my own writing in front of an audience and was published on the Writers Victoria website – check it out! Reading a piece of my own writing was a little daunting, I had read poetry and sang songs and performed pieces other’s had written, but never my own. I loved every minute of it!
Last year also showed me what it is like to go on holiday with friends who understand disability a bit more or who are more considerate and understanding of others’ needs. I realised that they don’t think it’s hard. They don’t find me to be an inconvenience and they don’t make me feel guilty for the things I cannot do. It was wonderful.
I co-organised a concert to raise funds for research into Orthostatic Intolerance (a type of Dysautonomia in itself and a symptom of other types of Dysautonomia and conditions such as Parkinson’s) and got to meet and have a long chat about Dysautonomia with Greg Page – the original Yellow Wiggle.
I also interviewed some pretty interesting people!
So what does 2016 have in store for me? I’m not sure but I really hope that my trend of slowly improving health continues, that I can get back to being more creative more consistently and also write more consistently. I hope that I can go on more holidays with wonderful people and make new and happy memories. I hope that I can get back on track with my millinery business, much-neglected website and plans for the future. I look forward to family parties and gatherings and spending more time with my Dysautonomia family. I also would like to work on my Netflix and Stan addictions…