MY CYCLE: Chronic Illness Advocate Keely
We chatted to digital creator and chronic illness advocate, Keely about her period routine, disability awareness and the realities of living with chronic pain. Here Keely shares her honest experience being diagnosed with PMDD and PME, how she manages pain and her light bulb moment discovering period undies for the first time.
Name: Keely @k__eelz
Occupation: Content Creator
Location: Naarm (Melbourne)
I do! I was in high school, and I got it while I was at school. My mum had always been really open and educated me about periods, so I knew what it was. I was too embarrassed to ask for a pad though so I wrapped toilet paper around my undies because school was about to end. As soon as I got home I told my mum and she gave me a choice of different period items I could use and took me shopping later that day so I could pick out my own period products and snacks.
I have PMDD (Premenstrual Dysphoric Disorder) and am also chronically ill/disabled, because of this I also have PME (Premenstrual Exacerbation) which makes my chronic illnesses flare beyond words - so my period is a horrible time! I begin to flare about two weeks before my period. I’m angry, depressed, anxious, I overthink every little thing, and everything hurts.
I have a condition called POTS (Postural Orthostatic Tachycardia Syndrome), so I get dizzy and nauseous. I also get really specific cravings and can only eat ‘that’ food, or I’ll become very sick. It’s really an all over the place kind-of-time for me. I can also become suicidal if my PMDD is bad enough, and if my chronic illnesses are flaring. I then spend a week with my period and try to recover from everything for about 2-3 weeks after. So basically, I spend a month and a bit managing my period and everything that comes along with it!
Honestly, the only thing that made my period easier is period undies. It was like a light bulb moment when I used Scarlet for the first time. I’ve tried SO MANY other products, being environmentally conscious has always been a top priority for me since I started my period, nothing else worked or was as comfortable and easy as period undies, especially Scarlet’s (I tried others and they felt like diapers!!)
I recently changed my pill on recommendation from my doctor and psychologist. I just couldn’t cope with my PMDD and my mental health and chronic illnesses were plummeting. Since then my mental health/PMDD isn’t nearly as bad. I get a little angry if I take my pill late or forget, but now I just cry and eat a block of chocolate in a day (I could eat two if I really wanted to but diary also doesn’t agree with me...) it’s PMS rather than PMDD.
I get really particular cravings and nausea from my POTS that gets worse around my period. So I really just allow myself to eat what I want. I usually do anyway - but I know my cravings are A LOT more specific, like if I want pizza all week - I’m going to allow myself to eat pizza all week - otherwise I most likely won’t eat because everything else makes me feel so nauseous.
Remembering to take my medications on time, especially my Pill and being regular with my pain relief - all of these are all really important self care tasks because they help me manage everything going on, so I don’t end up feeling worse. Planning and having things ready for myself before I start my period is also really important.
I have some recurring anxieties that pop up around my period. So I write little reminders in my notes / scripts to remind myself that everything is OK. “What you feel is valid, but you don’t need to worry about cleaning because you have already done it, the house can be cleaned when you feel better, it isn’t that important and doesn’t need to be done right now” - is one of the things I have written in my notes for when my mind is overthinking.
I also use Facebook Groups a lot, speaking to other people who really just *get it*. It’s amazing hearing from other people with similar experiences say “it’s so fucking shit and I’m so sorry, I understand”. It’s one of the most comforting things ever! Even just reading other people’s posts when I’m feeling down, makes me feel so much less crazy, and affirms what I’m feeling and experiencing is so valid.
Because I have POTS, Arthritis and Fibromyalgia, movement is pretty hard for me. I get extra dizzy around my period because of my POTS and my joints get sore, so I rely on my mobility aids a lot more to help me get around safely. My joints also become a lot more loose and lock/pop out causing me a lot of pain, so it isn’t very safe for me to move too much.
During my last two periods since changing my Pill, I was able to shoot content throughout it, which I haven’t ever really been able to do, and if I did, it would end in me having a breakdown and having locked joints. It was hard and took a little longer to get things done, but being able to have that movement during my period is an amazing accomplishment! I was a really active person when I was younger, I miss it!
Ugh! Honestly, I do not cope with my pain at all! My period just triggers everything. I can’t even have a hot shower without it triggering my POTS, so I’ve had to find new ways to manage it. Using heat packs, electric blankets, making sure I *ACTUALLY* take my Panadol on time and regularly.
I always say to my psych that I felt like I was two different people before being diagnosed with PMDD. It was confronting to face the way I acted in the past. I’m a really open person with what I experience, like my chronic illnesses and my history of mental health that I experienced as a teen. I tell people very casually that I’ve been hospitalised and would go to emergency regularly as I was worried for my safety, but I never had an answer as to why I acted like I did every month/every few months (on the pill). I ALWAYS just put it down to my mental health. I have a distinct memory realising my mental health got worse around my period - I just never connected the two.
I feel like my PMDD has impacted a lot of my relationships and friendships. Making sure people around me know that I’m about to start my period is really important. PMDD can also cause pain to those around me. I have impacted a lot of relationships because of my PMDD, which is really hard. That’s another reason why I needed a pill change. I truly just didn’t know the person I became with my period, it was a horrible feeling.
I wish people knew how overwhelming having PMDD is. Honestly it’s even more shit having it on top of my chronic pain, it’s just so exhausting. I have also realised I’m a very open and honest person, but because I never had an answer for the way I felt around my period, it was hard to speak to people about it, because they’d kinda just think it was PMS and would do the “oh same” (which like maybe they also have PMDD LOL) so I just wouldn’t bring it up, as I just thought this was normal… And it very much is NOT normal to feel like this!
I can’t start my day until I’ve done my skincare routine. My skin gets SO DRY and I also always get really big, painful pimples. So I always make sure to be really on top of my skincare, This means making sure I’m *actually* using my retinol regularly, especially leading up to my period, using extra moisturiser, oils and layering on the vaseline to keep my skin moist, as it just absorbs everything else and gets a lot more dry than it usually does. Sometimes, I have to use a prescribed cream to help my dryness as it gets so bad, because of this I don’t really care about doing my makeup... I don’t wear much makeup anyway.
It gets in the way, like a lot! Sometimes I can do a bit, but it isn’t very much and it takes me much, much longer to do things. If I do work I have to give myself a lot more time than I usually would, and if I’m shooting content I have to usually make sure I’m sitting down for the pics, as my POTS is so much worse.
I track my period (and realise pretty quickly that I accidentally skipped a pill, because I get symptomatic). But I can plan around it and just allow myself to rest during that time. I’ve always been pretty good at allowing myself rest when I need it. I know the repercussions now of pushing myself. Sometimes I still underestimate whether or not I’m pushing myself too hard, but generally, I know the signs if I need to rest and stop. I tried for a long time to push through it, as I was told it was the only way I’d get better. But it always just made my flare ups worse, longer, and it takes my body too long to recover when I push myself too far. Listening to my body is key - tracking my cycle really helps me with that.
Rest, Naps. Electric blankets. Having a massive water bottle so I don’t have to get up as often for water. Having snacks and everything else I might need within an arm's reach. Having a little space for myself away from everything, so I can go and cool off if I’m having intense PMDD symptoms. I also have my walking cane handy at all times incase I need it, although… I usually just crawl around my house because my symptoms can come on so fast, that it’s more safe for me to do that! (I laugh at myself every time I do “the crawl”. I want so bad to put a camera in my home to see all the weird shit I do, because of my chronic illnesses.
This is a little tangent - but I also love hot showers, but they can trigger my POTS like words can’t describe. So what I do is lay down in my shower, put my legs up against the wall and just turn it up all the way. It ALWAYS makes me feel dizzy, but being from Narrm/Melbourne, sometimes you need a boiling hot shower to warm yourself up!)
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If you are experiencing anxiety or suicidal thoughts and are in need of crisis support, please call the Lifeline 24-hour helpline on 12 11 14 .
If you are experiencing pain symptoms during your cycle, seek support from your GP or chosen health practitioner.