It's been a hard few months.
On one hand, physically I've seen some really encouraging improvements. I've been able to do more. I've cut out gluten, which was making me very fatigued after meals. I feel hope about my physical condition moreso than ever.
But there was a big setback. I'm an orphan by choice. I come from an abusive home, and what family I did have contact with were incredibly unsupportive when I got ill. It has been easier for me to just cease contact with them entirely. This makes my friends and supportive folks even more special to me.
One of them died 2 months ago. He was so important to me, he was like a father to me. He walked me down the aisle for that reason. He got leukaemia and a month later was taken by an infection. He was young, wonderful and kind. When you've received so much unkindness in your life, losing someone so positive feels unbearable.
I was in shock for weeks, asking my husband every morning if this had really happened. I was so shocked I didn't cry, and then I felt guilt for not crying.
I've had diagnosed depression on and off, before my illness and during. I'd been dealing with it before this happened, and the sadness of loss just made it that much worse.
But, somehow, I started reconnecting with myself. Perhaps I became so sad and introverted that I truly spent time with myself and the things that were important to me before illness. I turned back to metal music, which I hadn't been able to listen to while I've had ME due to noise sensitivity. And I turned back to fashion.
I've always been interested in fashion. I loved making my own clothes in high school. I love costume design and fashion history. Now it seems extra frivolous seeing as I can barely leave the house, but I love styling outfits and making clothes for myself that are not only what I want to wear, but accommodate my need for comfort now that I am unwell.
It takes me a long time to make a garment, and often requires the assistance of my husband for cutting fabric. But the gratification of making something is huge.
In high school, I was very influenced by the style of Japanese visual kei, popularized by bands like Dir en Grey, The Gazette and Malice Mizer. Their style was a mixture of goth, shock rock and Victorian. It was so inspiring to me to make my own outfits designed to be totally different to what everyone else in my town was wearing.
Since then, work, university and now illness, made fashion take a back seat. I tried doing rockabilly for a while, but it was too much effort for me. But when this death happened, I retreated to my comfort zone of black clothes with a theatrical twist. I started designing and wearing outfits accordingly. I started listening to the music I used to love, and music I hadn't explored before, like Faith and the Muse, All about Eve and Peter Murphy.
And then, I was talking to my husband one day about a dress I was designing and that's when I realised it. I was excited about something again. For the first time I could remember in months, I didn't feel numb or fuzzy. I was excited. I was happy and looking forward to something, and that's usually my litmus test to see where my depression is at.
I'll always miss the man I lost. I keep in touch with his widow regularly. And I've started crying again. The memories have come flooding in in the past week. As much as it hurts, I'm trying to feel my feelings and cry and welcome the grief. I know this will just keep hurting, but somehow that seems fitting. When a huge, positive chunk is pulled from your life, you should feel it. That's how you know it was important.
But out of that loss, I've gained something that makes me truly happy, even if it's something that seems sad or frivolous to others. In ways, this illness has given me the time to return to hobbies and loves I'd lost sight of when I was well.
This is really long and rambling, but I'll leave you with a quote from my favorite film, The Crow:
"If the people we love are stolen from us, the only way to have them live on is to never stop loving them. Buildings burn, people die, but real love is forever."
On one hand, physically I've seen some really encouraging improvements. I've been able to do more. I've cut out gluten, which was making me very fatigued after meals. I feel hope about my physical condition moreso than ever.
But there was a big setback. I'm an orphan by choice. I come from an abusive home, and what family I did have contact with were incredibly unsupportive when I got ill. It has been easier for me to just cease contact with them entirely. This makes my friends and supportive folks even more special to me.
One of them died 2 months ago. He was so important to me, he was like a father to me. He walked me down the aisle for that reason. He got leukaemia and a month later was taken by an infection. He was young, wonderful and kind. When you've received so much unkindness in your life, losing someone so positive feels unbearable.
I was in shock for weeks, asking my husband every morning if this had really happened. I was so shocked I didn't cry, and then I felt guilt for not crying.
I've had diagnosed depression on and off, before my illness and during. I'd been dealing with it before this happened, and the sadness of loss just made it that much worse.
But, somehow, I started reconnecting with myself. Perhaps I became so sad and introverted that I truly spent time with myself and the things that were important to me before illness. I turned back to metal music, which I hadn't been able to listen to while I've had ME due to noise sensitivity. And I turned back to fashion.
I've always been interested in fashion. I loved making my own clothes in high school. I love costume design and fashion history. Now it seems extra frivolous seeing as I can barely leave the house, but I love styling outfits and making clothes for myself that are not only what I want to wear, but accommodate my need for comfort now that I am unwell.
It takes me a long time to make a garment, and often requires the assistance of my husband for cutting fabric. But the gratification of making something is huge.
In high school, I was very influenced by the style of Japanese visual kei, popularized by bands like Dir en Grey, The Gazette and Malice Mizer. Their style was a mixture of goth, shock rock and Victorian. It was so inspiring to me to make my own outfits designed to be totally different to what everyone else in my town was wearing.
Since then, work, university and now illness, made fashion take a back seat. I tried doing rockabilly for a while, but it was too much effort for me. But when this death happened, I retreated to my comfort zone of black clothes with a theatrical twist. I started designing and wearing outfits accordingly. I started listening to the music I used to love, and music I hadn't explored before, like Faith and the Muse, All about Eve and Peter Murphy.
And then, I was talking to my husband one day about a dress I was designing and that's when I realised it. I was excited about something again. For the first time I could remember in months, I didn't feel numb or fuzzy. I was excited. I was happy and looking forward to something, and that's usually my litmus test to see where my depression is at.
I'll always miss the man I lost. I keep in touch with his widow regularly. And I've started crying again. The memories have come flooding in in the past week. As much as it hurts, I'm trying to feel my feelings and cry and welcome the grief. I know this will just keep hurting, but somehow that seems fitting. When a huge, positive chunk is pulled from your life, you should feel it. That's how you know it was important.
But out of that loss, I've gained something that makes me truly happy, even if it's something that seems sad or frivolous to others. In ways, this illness has given me the time to return to hobbies and loves I'd lost sight of when I was well.
This is really long and rambling, but I'll leave you with a quote from my favorite film, The Crow:
"If the people we love are stolen from us, the only way to have them live on is to never stop loving them. Buildings burn, people die, but real love is forever."
