I’m not admitting defeat, I’m defying it.

Most people who know me, know I have chronic illnesses. I’m eleven years deep with them, and explaining them – and living with them – is complicated. I currently have some diagnoses, but even those I question at times, because they’re for things that have no tests. You get these dx by process of elimination, and they came after a marathon hunt lasting three years. It’s been a long and exhausting road. It’s been a road I try to be open about, because other people sharing their stories made me feel less alone, and I hope that somehow I can do that for someone else.

This blog will discuss depression, anxiety, pain, and thoughts of suicide. Please don’t continue reading if this will upset you, please take care of yourself.

In 2006, after reading a book for a few hours I stood up and noticed my back hurt. Prior to this I wasn’t in any sort of accidents, I didn’t fall… to this day I can’t think of a reason why this began. It was a sharp and sometimes dull pain in my back, it was all kinds of pains in my legs – but especially numbness. When I went to the doctor they told me I had herniated discs, and physical therapy should fix it. Off I went. It didn’t fix it. Epidurals were had. They hardly helped, and they made me manic to boot. I struggled to balance what I wanted to do with what I was told to do, and since I was 16 – what I wanted to do won, every time. I went in to the pit for shows, I was barricade and squished by hundreds or thousands of other people, I queued all day for gigs. This made me worse, this undid the work I was doing outside of concerts. I didn’t care, because I was trying so desperately to control my life. I got worse. I got worse. I got worse. To the point where in 2008 after a long day of queuing, and a night on a barricade, I couldn’t walk the next day. I was out of university and an internship for a week before finally hobbling into an ER. Around this time was when the scarier discussions began to start with my doctors – surgery was a realistic option suddenly. I could hardly move, and used a cane regularly to get around. I was 18. Fine, sure, cut me open and play with my spine.

my spine

this is my spine, note the missing pieces.

I was 19 when I had my laminectomy. This is a surgery that removes the lamina (the back bit of vertebra on your spinal canal), and sometimes they shave down your discs apparently? I don’t even remember. It’s supposed to relieve pressure in your back. It helped for a little while. I was pain free, I could walk without a mobility aid (post-op I was using a walker), I could do what I wanted, within reason. I was careful this time round. I listened to my doctors, and for about a year and a half I was okay. And then I wasn’t. The tingles in my legs I had become so familiar with, they returned. I had MRIs done, but this time with contrast dye which made me feel sick. I had some re-herniations, scar tissue had developed around the site which was also annoying my nerves. Wonderful. More physical therapy, more epidurals, more medications, more treatments, more everything. More living cautiously and still getting worse. I was in denial. I was becoming depressed because I couldn’t control my body or my life, and this made me anxious about getting out there in life. I was always worrying in the back of my mind about my health, about my back, about my legs. I was worried I would go too hard and be out of commission for days. I was worried about being a burden. It was easier to pretend I wasn’t as bad as I was, and to recoil from life for a bit. And I did. And it sucked.

2011 into 2012 saw my pain somehow become more widespread. Muscles all over would ache and tingle on and off, it was no longer confined to my lower back and legs. I felt weak. Sometimes my legs would give out on me, sometimes I’d fall. It was scary, because I didn’t understand what was happening or why. In the spring of 2012 I started having sleep issues… I would hardly sleep for days on end and then spend almost an entire day in bed catching up. This repeated for weeks and weeks. It messed with my ability to focus in school, and made me feel weaker while I tried to do my physical therapy. It made my pain worse, because when I did sleep it typically wasn’t restful sleep. I went to new doctors to have them run tests. They all came back fine. I was given sleeping pills to try, they didn’t work. I took a sleep study, they noted that I had over 100 disturbances to my sleep cycles. One doctor concluded “you’re in pain, so you’re not sleeping. Take more pain medication.” I was 22. You don’t tell a 22 year old to take MORE pain medication just to do something as trivial as sleep – pain meds I would save to do fun things when my body wasn’t having it. I’d rather be a zombie than be unable to do what I wanted when I wanted. So this began my struggles of insomnia and fatigue, a vicious never-ending cycle.

The muscle pain spread throughout my body, and no doctor and no test – to this day – knows why. A current doctor says I have Fibromyalgia. There’s no test for this. The insomnia, and following fatigue, began without rhyme or reason. It made my muscle pain worse. It gave me brain fog, where my head felt dense and heavy and it was a struggle to understand people, and to speak in coherent sentences. There were many times I would cry out of frustration and exhaustion and pain, like an over-tired toddler throwing a tantrum, because I couldn’t go to class, because I couldn’t think. My hair would hurt on my head. All of this, all of this, all of it made my depression and anxiety deepen. To this day, I don’t know why I can’t sleep, or get restful sleep. A doctor says I have Chronic Fatigue Syndrome. There’s no test for this.

I’ve had periods of depression where I was absolutely miserable doing things I loved. I’ve had periods where all I wanted was to not exist, where I wanted to die to escape the pain and the torment of not being in control of my body. I was young. I should have been done with school, I should have been working with music, I should have been having the time of my life. Instead I had to weigh the pros and cons of everything I did. Going out with friends meant I probably would spend the whole next day in bed recovering. Going to class and sitting in crappy plastic chairs with no support meant by mid-day I would have to go home early, close to tears from the pain. I had to navigate academia with teachers who didn’t believe I was unwell, and wouldn’t accept my doctors notes. I wanted to work in music, but it can be a grueling life – I saw all the hours my friends put in at labels and agencies. And I panicked – I wasn’t sure if I could survive the things they were doing day and night for work. Literally all I ever thought of myself as doing was working with music. My dream was stolen. My control slipped even farther away. The FOMO was inexplicable.

Survival

I stayed at home and blogged about music and tv shows and films. I talked to people in the UK and California, so I would have people awake with me at all the weird hours I found myself awake at. I finally searched out chronic illness communities, and was heartbroken and floored to find so many other young people living with illnesses and disabilities, talking about them. It helped me to accept the term “disabled” as an identity – a label I had been terrified of and running from. Doing so was huge for me, but I still struggled and struggled.

I wrote above that I got the names Fibro and CFS from doctors, but I didn’t get those until 2015… when those problems began in 2012. I had the joy of – while juggling my physical and mental health, school, and various jobs – going to doctors regularly to try and figure out what was wrong. To make matters worse, it seemed NO SPECIALISTS TALKED TO EACH OTHER. So not only did I constantly have to fill out the same paperwork at each new office, I had to say the same speech of what was wrong (honestly, I should have just recorded it). I would be poked. I would be squeezed. They’d bend me and stretch me. They’d drain my blood for tests I knew would come back normal, because they always did. It felt like purgatory, or ground hogs day, that I was repeating basically the same appointments over and over and over and over. I had doctors dismiss me that it was all in my head. I had them say there was nothing they could do for me. I had them recommend further specialists. And it felt like I was going round in circles, and doing their jobs for them because god forbid they fax something over or call the other doctors for me. I got in the habit of making all my own copies and carrying my own huge file of documentation from appointment to appointment. A few times I snapped and screamed at doctors and nurses because of the ways they treated me. This made my mental state worse. So though tests weren’t ran for them, I’m glad I have the names I have now. Having names is better than no names – I just worry at times if there’s something else still hidden that somehow we still haven’t discovered.

I have a good doctor now that I really like. He listens to me, he takes me seriously, he’s helped me a lot. I still struggle with managing my pain and fatigue enough to do everything I want. It’s really hard, but I would rather do the things I want to do and “pay for it” later, than not do anything at all and still feel miserable to some degree. That’s the daily measure I have to take. My favorite historical figure, Theodore Roosevelt, felt similarly.

Screen Shot 2017-04-23 at 11.18.39 PM

“Doctor… I’m going to do all the things you tell me not to do. If I’ve got to live the sort of life you have described, I don’t care how short it is.”

My mental health has it’s ups and downs too, just like the physical. The two are very much intertwined. When my back and legs flare up, it’s not long until my mood tanks. When I don’t get to sleep much for a few days, or weeks, in a row, then the anxiety rises over every little thing and I’m worried about every action and I’m worried I am a burden on everyone I love. The support system I have is why I am still here. The people and the things I love in life keep me here. They keep me wanting to fight. Fight for some control and management of my life. It’s really, really hard, but it’s worth it. And I’m not alone, and I’m loved, and they have my back in more ways than one.

Over the years, friends of mine have shared with me that they’re sick too in various ways. It’s nice that we have each other to talk to, to hobble with, to bitch with. They get it in ways others can’t. One particular friend recently started a group called the Aches and Pain Gang, which I kind of adore. We have patches.

I’m near tears as I type this out while listening to “Memory Beta”, a song by my friend Non Canon. The ending refrain is “I’m not admitting defeat, I’m defying it. I’m not admitting defeat, I’m denying it.” When I heard him perform this live for the first time last summer I nearly lost it in the woods of 2000 Trees Festival. It feels like he’s singing the past eleven years of my life.

I wouldn’t wish this life on anyone. I don’t want to be anyones inspiration porn. I don’t want anyones pity. I don’t want your treatment recommendations. I share some of my story, because other people shared theirs, and it helped me more than most doctors I’ve crossed paths with. If anyone is suffering, I hope you find a doctor you trust, who listens to you. I want you to know there’s no shame in admitting you need help, in whatever capacity that help can come from – be it a helpline, a medication, a mobility aid, a treatment, etc. Get the damn help, if you can. We all deserve to feel okay.

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