Managing Life and Wellness with Premenstrual Dysphoric Disorder

About 5 years ago, I was experiencing a cyclical issue that I couldn’t figure out but was causing some terrible symptoms. Migraines, a deeper depression than I normally live with day to day, and some extreme anger. I initially went to the doctor because I was afraid that I was displaying some signs of Bipolar Disorder, but I was actually diagnosed with Premenstrual Dysphoric Disorder.

Symptoms

The symptoms of PMDD are extreme mood swings, increased depression and anxiety, migraines, extreme fatigue, painful menstruation, and other bodily and mental pains. For more info on symptoms, go here (I’m sorry that the language is not gender inclusive. I didn’t write it.)

The trouble with PMDD is that the symptoms are very similar to PMS and they occur around the same time during one’s menstrual cycle. However, PMS is not as extreme as PMDD. The mood swings with PMDD are extreme. I am not usually a very angry person. I have a lot of patience. But when my PMDD is flaring, I get and stay very angry and impatient for several days. And then it just disappears and I wake up in the morning one day and I feel normal again. Another clue to PMDD is hormonal migraines. I am very aware of my menstrual cycle and I usually get a migraine when I ovulate and then a few days before my period actually starts. And then my period is over and I’m back to normal for a couple of weeks.

Surviving with PMDD

The biggest struggle for PMDD for me is that half the month, I feel totally useless and down. It feels like I get two weeks to be normal and then I have to struggle for two weeks through migraines and body pains and anger. And on top of that, Hypermobile EDS does not play well with the hormonal changes in the second half of the menstrual cycle either. So what do I do??

I think that the best tactic is to do what you can when you can. As I type this, I’m in the first half of my fertility cycle. I feel very much like myself and honestly, I wouldn’t be able to even write a blog post when my PMDD is flaring up. So when it isn’t, I take full advantage of being able to be more active and of having the mental clarity to do things like writing or programming or studying. This way, I get things done and take care of myself, which paves the way for increased self-care when I need it after I ovulate. During those times, I may need more sleep, I may need gentler forms of exercise like yoga or stretching or walking. I may not even be able to do those things and that is ok! It is fine to rest. Take it day to day. If you’re not also struggling with a disability that also affects your day to day life, then PMDD may only take a few days out of your month. It is even more vital then to take rests when you need to. Your body is asking for it. So remove guilt from the equation, hunker down, give yourself grace, and wait.

The treatment of PMDD is fairly basic, involving both anti-depressants and hormonal birth control. Together these both stabilize the mood and hormones, making the hormonal shift easier to survive. Eating well and exercising are also recommended. Nutrition may play a role in the severity of the condition as there is some evidence that deficiencies of certain substances can make it worse (read more about the supplement recommendations in the article above. Talk to your doctor, I’m not a doctor, I’m not responsible, etc.). Exercise and conditioning can help too, mitigating pain, decreasing stress, and helping to even out hormonal levels.

Unfortunately, PMDD can last from when it develops until menopause. Does that suck a whole lot? Fuck yeah! That’s why it’s even more important to take care of yourself. You have 20-30 years of this possibly?? Taking 2-3 days a month to survive is allowed and encouraged. Yes, this may impact your social life and the dishes may go undone for a couple days. Do not feel guilty! This is a terrible disorder and quite frankly, if you’re making it through, you’re a MFing rock star to me!

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Podcast Resources: Episodes 2&3

Hey everyone! So here are the sources I used for my 2 podcast episodes on Fatphobia/BoPo/Fat Liberation. I highly recommend you take a look through them after listening to the episodes because there is a lot of information out there. If possible, definitely read the book by Sabrina Strings. It is an amazing breakdown of the origin of racial tensions and fatphobia in Western culture.

Episode 2:

Fearing the Black Body by Sabrina Strings

Fat Phobia Affects Everyone by Sabrina Strings (article regarding the content of the book referenced above)

6 Tools For Understanding and Dismantling Weight Stigma and Fatphobia by Gillian Brown

Episode 3:

https://en.wikipedia.org/wiki/Body_positivity

Black Women Started The Body Positivity Movement, But White Women Corrupted It by Danielle Jennings

The Feminist History of Fat Liberation by Sarah Simon

Why I’m Trading Body Positivity for Fat Acceptance by Amee Severson

The Fat Acceptance Movement: Answers to 5 Important Questions by Ashley Laderer

Why I Cancelled My Planet Fitness Membership.

Today I stood in front of the trainer at Planet Fitness and had to admit to her why I was cancelling my membership. I mumbled something about not agreeing with the “Biggest Loser thing” but I suddenly felt like I was going to get in trouble. She couldn’t put in an option for “other” under reason for cancellation so we just put down that I moved. We did move six months ago and I have room for a home gym in our garage which is what I’m working on setting up. But, after we did that she said she was genuinely curious to hear about my opinion on TBL. So I told her. And I’ll tell you, but first some background.

The Biggest Loser has been an inspiration to many people. Over ten years ago, I was one of those people. I lost weight and I did alright at keeping it off. I loved watching the people on the show hit their goals and encourage each other. But now we know that the methods used on the show are dangerous and harmful. It is not safe to lose that much weight that fast. And doing it requires constant exercise and near starvation. This is not sustainable. And you’d see later on when they were visiting people at their homes, exactly how hard it is to sustain that weight loss in a real world setting. Because we have jobs and kids and get sick and shit comes up. It’s also really difficult to see people eating normally while you’re starving yourself. Especially if what you’ve historically done is eat as much as you want in those same settings.

This is not a matter of willpower. The truth is that we need to eat, and we’re usually enjoying the company of others when we do. Eating is a communal human activity. It is significant in every single culture. Diet culture tells us this is wrong, but social health is just as important as, if not more important than, lowering our weight to an arbitrary number. I’m not saying that you need to eat socially to bond with people. Just that if you’re with a group of people, there’s probably gonna be food there. And why wouldn’t you want to enjoy yourself? And no I don’t want to hear about, “well they deserve it for getting so fat”. Hard pass on that fatphobic bullshit.

One person I really admire that has been a vocal critic of TBL is former contestant Kai Hibbard. She went on the show to lose weight and came out with an eating disorder and severe injuries. She has given a glimpse of the behind the scenes of the show and it is not good. They starved and dehydrated contestants. They were verbally abused by the trainers. There have even been accusations of them being dosed with medications to speed up their weight loss. If you’re interested in this topic I highly recommend reading her book and following her on Facebook and other social media.

Now that I’ve sad all that, we come back to me and the trainer at Planet Fitness talking while I was cancelling. I told her, you know, I don’t support the Biggest Loser because it does more harm than good. A lot of the people regain the weight and they just spread ignorant and dangerous methods. She said that she would pass that along and look up some of the stuff I told her about.

It was difficult to me to stand up and speak the truth out loud. And I didn’t even get to the worst part of it for me: Plant Fitness says that their gyms are non-judgmental. But that’s hypocritical if they are sponsoring The Biggest Loser. That game show is the essence of judgment. They spread the lie that it is better to starve and beat yourself into a smaller body than to exist in a bigger one. They tell society that you do not have worth and do not deserve respect or dignity if you are fat. Does that sound non-judgmental to you?

If you can, I urge you to cancel your PF membership if you have one. And tell them why. Align yourself with the oppressed and speak up for them. And if you have a membership and you have to keep it because of whatever, reason, that’s fine. But you still have a voice and you can still use it. So please, say something! And if they change their ways, then maybe I’ll see you there again one day.

-Amanda                                                                                

How Hormonal Changes Affect hEDS

When I gave birth to my son a little over 6 years ago is when my EDS became worse enough to start causing severe enough problems that eventually led to a diagnosis. One thing I started noticing after my diagnosis was that my joint issues flared around the time I got my period. I have seen mentions of this from many people who menstruate and have hEDS too. It’s a pretty common question in the EDS groups I’m in too! So what’s it all about?

(Please note that I am doing my best to use gender inclusive language in this post; please correct me if I can improve something)

The effects of hormonal changes will be more pronounced for people with uteruses because the monthly hormonal changes themselves are more pronounced. People with penises tend to have more stable hormones, and even if they were experiencing hormonal changes, men tend to have more muscle mass than women. This is assuming a person assigned male at birth; trans hormones are more complex than this and a trans man or trans woman will have different hormonal considerations. So those of us who menstruate will experience more hormonal changes and also deal with less muscle mass to protect those joints (depending on fitness level of course). If you are ovulating, then you will experience a slight hormonal change from then until you begin menstruating. At some point, the level of progesterone becomes higher than the level of estrogen. Estrogen is what would usually protect the connective tissues from the loosening effects of progesterone. If at this time you menstruate, eventually the progesterone level will go down, estrogen will become more dominant again, and the increased pain and laxity will go away. If you are pregnant, the progesterone level will stay elevated until the pregnancy is over.

Pregnancy considerations aside, what does this fluctuation mean for our poor connective tissues? It means that for 2-3 weeks out of the month, we will have normal levels of laxity. Then, in the several days leading up to menstruation we will have increased laxity, leading to increased pain and possibility of injury, until a few days into menstruation. For a more detailed medical explanation of all of this including birth control considerations, go here. (A note about birth control: the author recommends avoiding progestin only birth control. However if you, like me, have migraines with aura, this may be your only option for birth control. I have not found any issues from it but that’s a choice you have to make with your doctor about what’s best for you considering ALL of your medical conditions. I use the mini pill to control PMDD which is more important than possible increased joint laxity).

SO. What do we do? If you’re like me, you may have enough going on around the time of your menstruation that you become a tortured hermit. And that’s ok! It’s enough to just survive sometimes. Therefore, what becomes most important is what we do outside of this time period. Working on joint stabilization through resistance exercise is going to be really important. It may not lessen the pain much but it could be the key to avoiding dislocations during this time. I do have more subluxations during that week but I have managed to largely avoid full dislocation. You also want to make sure that your self-care is prepared in advance. Having any medications you need filled, basic life tasks done or easy to do, someone to help you out with chores, stuff for pain relief like bath supplies, heating pads, creams you like (love my icy hot roller when my spine is acting up!), and of course snacks and shows to watch. Think PMS prep but on steroids!

The most important thing in my opinion is noticing what’s coming and recognizing it and then giving yourself grace. You may not accomplish much during this time, especially if your joint issues get bad enough that you can’t move around much. Regardless if it’s from pain or fatigue, please be gentle with yourself. Your risk of injury is increased when you feel this way. If you push yourself too hard then you could end up with a serious injury and then you will be forced to rest even longer. You know your body best and so you may be able to do whatever you need to. But if you know you can’t, then don’t. And do not feel bad about that. Anyone who judges you because “It’s just a period” can actually be told to fuck right off!

I hope this is helpful. What I want you to take away from this is that you are not imagining things. There is a scientific explanation of what is happening during “that time of the month”. Some of you may be wondering, does this hormonal shit storm continue into our menopausal years? The answer is yes! Super awesome, eh?? Not really. I’ll be covering that at another point in the future. For now if you have any questions or comments, leave em here!

-Amanda

If They’re Selling You Weight Loss, They Don’t Care About Your Wellness.

There are a lot of companies out there who sell weight loss. Big and small, successful or not. Weight loss is a market that makes billions of dollars even though research shows that keeping weight off is the exception, rather than the rule.

There is a small subset of these companies who take weight loss and wrap it up in buzzwords such as body positivity, and autonomy, and empowerment. They may even say that they are anti-diet and that they are helping you break free of shame so you can finally lose the weight in a body positive way.

They are full of bullshit.

They have taken actual issues, like bodily autonomy which is often tied to women breaking free from others’ control of their bodies and lives, and have put us back in the box that says “you still need to be preoccupied with how small your body is”. They have perverted our true empowerment and say that an obsession with weight loss can set you free.

WEIGHT LOSS OBSESSION WILL NEVER SET YOUR FREE.

I’m sure you’re probably familiar with this quote:

“A culture fixated on female thinness is not an obsession about female beauty, but an obsession about female obedience. Dieting is the most potent political sedative in women’s history; a quietly mad population is a tractable one.” – Naomi Wolf, The Beauty Myth

The truth is that no matter how weight loss is packaged, it is still diet culture. And diet culture is oppression.

When people sell you weight loss, they are saying that your long-term wellness does not matter because the desire to be thin is more important than the desire to cultivate other aspects of your health. When you lose weight, you will likely gain it back. Then you try again and fail again. You have entered the world of yo-yo dieting which is way worse than simply maintaining your current body weight and adding in more varied nutrition and some physical exercise.

Perhaps they are saying the same things I am! I’ve seen it, trust me. If you follow our program, you’ll be able to keep the weight off.

LIES.

A program focused on weight loss is still a diet and diets don’t fucking work. I don’t care how much these (usually thin white women) tell you that this will empower you, and it’s okay because autonomy is important.

Of course autonomy is important! So are you going to use your autonomy and empowerment to feed an obsession with thinness? Are you going to buy in the lies of these people? In my opinion this shit is even worse than other weight loss companies. Because they are tricking you into thinking that this is your choice when in reality, you’re just buying into the same bullshit we’ve always been sold.

A diet is a diet is a diet. No matter what kind of pretty faux feminist packaging it is presented in. Hey, selling weight loss is easy! In the end, all the onus is on you for failing, right? And since this is “your choice”, then why aren’t you doing it right?? All the fluff in the world cannot make this okay. Every diet, whether it’s paleo or Weight Watchers or habit based or intermittent fasting…it’s all the same shitty diet culture that exists to make you feel bad. And trust me, you are just another cog in the machine to these people. They sell weight loss because it makes them money, that’s it. It’s easy, it’s self-perpetuating, it’s disgusting.

If you don’t like what I’m saying here, then my question is this. If you stopped focusing on weight loss, what could you accomplish? If you weren’t obsessed with the content/timing/being right about your foods, what else could you do with that energy? How much time do you spend calculating calories or ticking off meal requirements? How much emotional energy are you putting into making sure that your body fits some fucking mold? Wouldn’t you love to do more?

In the end, no matter how it’s packaged, intentional weight loss is still diet culture. And diet culture will never ever set you free from anything. It may blind you to the fact that it’s still about your oppression but I’m here to tell you that it’s not empowering, it’s not positive, and it will not serve you in the long run. And neither will the people selling you this delusion. They will blame you and leave you behind. Bust through their bullshit and leave them behind first. I promise you that it will give you so much more freedom than their feel good lies.

I’m Disabled but Don’t Police My Fitness

Getting a diagnosis for Ehlers-Danlos or any other chronic illness can be quite the mountain to climb. But what happens when you get to the top and begin the descent of learning to live with the diagnosis? I’m going to be doing a series of how to adjust to life with a labelled disability. Today though, I’d like to talk about the exercise aspect of things (to nobody’s surprise!).

Specific to EDS, there are some recommendations the medical community will make to a newly diagnosed patient. There will be some movement restrictions such as no running, no heavy lifting, no heavy cardio, no high impact activities. The reason for this is because these activities have a higher impact on the joints and muscles, areas of the body which are directly affected by the genetic defect that causes EDS. Yoga is also discouraged as it can sometimes prompt us to stretch too far and that does need to be avoided if you have hypermobility. There is also a high comorbidity of dysautonomia amongst EDS patients. This includes Postural Orthostatic Tachycardia Syndrome (POTS) and Mast Cell Activation Syndrome (MCAS). These can be triggered by intense activity among other things.

So there is some reason to ask EDS patients to be careful with their activities. But is there enough to ask every one of these patients to give up exercise and then police them for that?

To be fair, most of the policing comes from other EDS patients, and not the medical community. I was in physical therapy before my diagnosis for a couple injuries and it was my PT that suggested I be evaluated for hypermobile EDS. It was also her that encouraged me to get back in the gym to manage my hypermobility. Since then, I absolutely notice a difference in my pain levels and subluxation occurrences when I take more than a few weeks off from exercise. I am very confident in my routine, which does include yoga from time to time, especially as a warmup or off day activity.

I help admin a Facebook group for athletes who have EDS. I help others with EDS to use exercise to help manage their chronic pain. I encourage others like me to find a form of exercise that works for them while listening to and honouring their bodies. I personally think that the benefits of exercise should no be given up because you have limitations to deal with. That’s why I do what I do!

Unfortunately, there will always be people who will criticize others who are doing what they want and not “following the rules”. Recently I had an experience in a group that focuses on calling out ableism. I mentioned that I have hEDS and I workout and do yoga. Someone proceeded to accuse me of playing doctor and telling EDS patients that they don’t need to listen to their doctors. Apparently me doing yoga is attacking the entire medical establishment and saying doctors don’t know what they’re talking about?

I can tell you one thing, which is that I respect doctors fully. However, my doctor doesn’t live inside of MY body. This is my home and I’m allowed to do what I want with it. The people who come to me for my professional guidance have already made a choice. I am not a doctor, I know that. But I have extensive knowledge, not just as a trainer or graduate student, but as a disabled person myself.

My professional advice will always be this: do what is best for your body and don’t fucking police someone else for their choice of physical activity. Living with a chronic illness that involves a lot of pain is difficult enough already without people making you feel guilt for taking care of yourself the best way you can.

I hear constantly from others with hEDS that physical activity reduces their pain levels and allows them to do more and feel better mentally as well as physically. With all of the obstacles already facing us, why not use every tool to hopefully stave off any other health problems we could be facing down the road?

The bottom line is this: disabled bodies are policed enough from everywhere. Please fucking stop it. Trust me. I know my body. You know yours. We’re all just trying our best.

Why you should hire a disabled personal trainer.

When you think of a personal trainer, what do you picture in your mind? I’m assuming there’s a lot of muscles, low body fat, ripped abs, etc? At least, that’s what the fitness industry convinces personal trainers they need to look like or they’ll never get any clients. If you can’t walk the walk, then why would anyone want to work with you?

There is a section of the fitness industry that is ignoring these arbitrary standards and these people are becoming trainers, coaches, and teachers regardless of what their body looks like. There are fat trainers, athletes, and yoga teachers these days. I personally love filling my social media with people who are breaking these barriers and making a new path to invite everyone into the fitness world.

While I love my fellow big bodied people breaking stereotypes, when I search for disabled personal trainers, I find a distinct lack of options. Instead, I find a lot of information for trainers who are working with disabled people which is nice, but I feel like it’s lacking. Is there an assumption that only abled people can understand how to train people properly and well?

I polled my Facebook friends on this. I asked them: would you hire a disabled personal trainer? I got only positive responses, with several friends confirming that what someone’s body looks like does not determine their knowledge and that for them, the expertise mattered more. So I thought I’d compile a few reasons why you may purposefully hire a disabled personal trainer even if you are not disabled yourself.

They are passionate.

I became a personal trainer to help people improve their lives. I continue being a trainer even though I now have a disability because I cannot give that dream up. Now I focus more on functional fitness and helping people supplement their lives with fitness, but my passion remains the same.

They have more intense knowledge.       

My experience with hypermobile Ehlers Danlos Syndrome has increased my awareness of how our bodies are so interconnected and how one tight muscle can affect something somewhere else. One of my clients has learned a lot about this from me since we started working together over a year ago, and she is always astounded by how a muscle she’s not even using is working because she’s doing a simple isolation move. The truth is that your body is anything but simple. It is a complex machine. Who knows better how to work a machine than the one who has to deal with a busted one all the time?

They have the credentials.

Regardless of what some people might say, credentials do matter. Some personal trainer certifications are much more difficult to get than others. For instance, if someone has a CSCS, it means they have already met a certain level of qualifications to even sit for that test, and have then passed it. I got my Masters in Sports and Health Sciences because I love learning and wanted to formally increase my knowledge. Likewise, experience is a form of credentials in my opinion. Does the trainer you’re considering have experience and formal education through school or reputable certifications? Then maybe it doesn’t matter if they’re a little fluffy around the middle or use a cane to maintain mobility.

They will listen to you.

Do you remember The Biggest Loser? Screaming trainers pushing puking fat people past any reasonable limit? Not caring about injuries? Pushing the boundaries of health and legality to achieve any modicum of weight loss? I feel as though a generation of personal trainers were inspired by this terrible example and thus tend to push their clients beyond what is necessary. Maybe the reason you think exercise sucks is because a trainer in the past has done this to you or it’s the only example you’ve seen. Listen. You don’t have to do Crossfit or a million burpees or be half dead at the end of your workout to have it be worth it. And if you told me that you’re not feeling something today, fine. Skip your workout and take care of you.

There are also a lot of examples out there of people who are joining a gym because they want to get fit and do not care about losing weight but their goals are not respected and they still have things like weight loss shoved in their faces. Bodily autonomy is very important in the disability world and for me, that includes the goals you have for your body. I recently wrote another post on how I’m so tired of weight loss. So maybe finding a trainer who lives outside the box would be safer for you than someone who may not always respect your goals or may think you’ll eventually change your mind (yes they’re out there, yes it’s gross).

They may be more accepting and compassionate.

Being disabled is an existence of marginalization. I have received so much acceptance from my fellow disabled people, and they tend to extend acceptance to other marginalized groups. Obviously this one is on a case by case basis because anyone can be nasty, but at least with me you know you’re accepted because everyone is welcome around here.

You jive with them.

Getting along with your trainer is extremely important. Finding someone who gets you and who you connect with is vital. Communication needs to be open and respectful. They need to listen to you and you need to be teachable. It is give and take on both sides. You are a team. I’d urge you to give a trainer a chance if all the above is in place and you get along with them, even if they don’t look like a typical personal trainer.

You’ll be supporting intersectionality.      

Obviously this one is personal. It may not matter to you but if you’re here, then it probably does. Supporting increased diversity in the fitness industry is extremely important at this point in time. The industry is sexist, ableist, racist, homophobic, transphobic, and altogether a total damn disaster. We need more diversity in it. Furthermore, financially contributing to a disabled person is a form of social justice. Disability benefits? Seriously extremely difficult to get and are barely enough to live on. If social justice is important to you, support a marginalized trainer from any group that society constantly shits on.

That’s my full list! I would love to hear from you on this topic. Would you hire a disabled trainer? Have you in the past? Maybe you’ve had a coach or trainer who lives outside acceptable body norms and I’d love to hear about it!

Amanda