When you need to exercise, but depression stands in your way.

I literally have no suggestions, only exasperation. Exercise has been a HUGE struggle for me for a long time, especially the past few months.

Regular exercise is beneficial for depression, anxiety, migraines, IBS, chronic pain, joint strength, weight maintenance, etc. But my depression has been so bad lately, it’s difficult to even get out of bed in the morning. The only reason I get up most days is because I know my dog needs to go to the bathroom (although he just keeps sleeping until I finally get out of bed, which is not the most motivating of potential dog behaviors). So how can I also be expected to exercise???

When I got my Ehlers-Danlos Syndrome (EDS) diagnosis, the doctor told me getting regular exercise is the single most important thing I need to do in order to keep my joints strong. When I brought up my depression as a roadblock, he didn’t have anything particularly helpful to say. Thanks doc!

When I lived in the DC area I played volleyball occasionally, but after I moved to Boston I didn’t have anywhere to play. My social anxiety makes it difficult to join new groups, so that’s a fun extra hurdle to jump that I couldn’t get over. It’s been almost a year since I got any real exercise that is not simply walking my dog, and that needs to change.

With the EDS diagnosis, I now know that volleyball is actually a pretty poor choice of exercise due to the high impact on my joints. It should have been a clue to stop playing when my knee kept giving out on the court, and when I always had trouble walking the next few days. Volleyball has been the only form of exercise I’ve really enjoyed, despite the pain. Exercising regularly feels even more overwhelming now, because it also involves finding a new form of exercise.

The most recommended exercise for EDS that I’ve come across is swimming, because it’s easy on the joints. I took swim lessons at the YMCA as a kid, and I was on the swim team in fifth grade (I was pretty terrible, but I got lots of participation ribbons like a good little millennial). So, I know how to swim, but swimming laps has never been something that I found to be particularly enjoyable.

What do you do when you’re told exercise will help your depression, but your depression prevents you from exercising?

I know real exercise would be beneficial for so many things in addition to my depression, but I still can’t get myself to start doing it. Once I start, I think momentum will help keep going, but getting started feels nearly impossible.

There’s an indoor community swimming pool that’s a five minute walk from my apartment, and a year-long membership is only $30. Hopefully posting this will make me feel some sort of accountability to finally go to the pool and get a membership. Once I have a membership I’ll likely feel more obligated to go since I’ll have paid, and guilt is (sometimes) a magical thing.

I often wish my dog was annoying in the morning, but it’s nice my roommate’s dog comes to hang out with us 😁

I still assert that if I ever won the lottery I would move to a farm and adopt all the greyhounds. Like a dalmatian plantation. But I also only played the lottery that time it recently went over $1 billion (and spoiler alert, I didn’t win), so it seems unlikely to happen.

Hopefully by my next post I’ll at least have gotten my pool membership. 🤞

Xoxo,

A

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Catastrophizing is the worst, and baby steps are key!

So, it turns out that catastrophizing is a bad thing to do. My brain is so skilled at making mountains out of molehills and imagining the worst case scenario.

The good news is, I’m a scientifically-minded person and I can come up with a logical argument as to why my highly anxious mind should calm down. The bad news, is that my brain refuses to listen to logic when it’s in freak-out mode.

I was very anxious for my consultation with an integrative care doctor, imagining he would tell me the millions of things I needed to change immediately because I was doing everything wrong. I had several panic attacks in anticipation of the appointment – part of this was likely because I’ve had so many terrible experiences with doctors. It’s difficult for me to imagine going to a new doctor and having them validate everything you say and treat you like a human being.

But this doctor was fantastic. Not only was he knowledgeable about Ehlers-Danlos Syndrome (and had resources to give me), but he made multiple comments about how people like me are silent sufferers. He said there are so many people with chronic pain who look normal and healthy, so people and doctors automatically think there isn’t actually anything wrong with us.

Many of his patients had similar experiences of being told their health issues are psychosomatic or that they are malingering. He reaffirmed that yes, there is a reason I’m in pain all the time, and no, it’s not my fault, and it’s not in my head.

My biggest worry about the appointment was that I would be told everything I was doing wrong. My mind immediately starts making possible laundry lists of all the things I need to change. My therapists (yes, there are two) remind me that it’s better to take baby steps. My dad also tells me to take one step at a time. I told him he’s right, but I don’t want it going to his head.

The doctor also wants to start off with small changes. He said to start I should see their chiropractor. Based on research I’ve done, I knew that chiropractors can be very helpful for headaches, neck/ back pain, and TMJ. But I also read that if the person doesn’t know what they’re doing, or if they don’t understand hypermobiliy disorders, that they can actually do more damage. However, the chiropractors in their practice are specially trained for working with EDS and other hypermobility/connective tissue disorders. Their chiropractors also work closely with the neurologist in the practice (she also happens to work with my current neurologist – added bonus). This has given me confidence to try out the chiropractor to see if it helps.

The only other change he suggested for now is to try L-theanine (he recommended between 100-200mg). It is an amino acid most commonly found in green tea. It promotes relaxation without drowsiness, and it can help with focus. I’m hoping that taking this during the day will help with my general level anxiety as well as help cut through the brain fog that often gets in the way of my work.

You can get L-theanine from drinking green tea. If I have an active migraine, caffeine can actually help give some headache relief. However, because of my migraines I avoid drinkin caffeine regularly to prevent rebound headaches. But if caffeine rebound headaches are not an issue for you, drinking green tea could be used instead of the L-theanine extracted from it.

The doctor confirmed that exercise is very important for EDS. However, he also said I shouldn’t put too much pressure on myself to exercise everyday if it feels unattainable.

New manta: baby steps.

Newly Diagnosed with EDS – First Post!!

Hello internet, and welcome to my first blog post!

This blog will be a place for documenting my journey as a newly diagnosed zebra. What is a zebra?

Doctors have been taught “When you hear hoofbeats behind you, don’t expect to see a zebra.” They look for the more common explanation, rather than the unexpected diagnosis. In my case, I have the unusual diagnosis of Ehlers-Danlos Syndrome (EDS). EDS is a rare connective tissue disorder caused by a defect in collagen production that is characterized by joint hypermobility, skin hyperextensibility, and tissue fragility. Current statistics show the total prevalence as 1 in 2,500 to 1 in 5,000 people (www.ehlers-danlos.com). The zebra is the symbol for EDS because sometimes when you hear hoofbeats, it really is a zebra!

For most of my life I’ve been dealing with varying degrees of joint pain, migraines, IBS, depression, anxiety, etc. Some doctors have told me I just happen to have all those health issues independent of each other, others said my problems were psychosomatic, and some have implied I was malingering. Living with chronic pain without a known cause has been frustrating, especially after being told it’s essentially in my head.

After I moved to Boston in August, my new neurologist thought it was worth looking into a potential EDS diagnosis since it could have treatment implications for my headaches. She referred me to a geneticist, and on January 31, I got the diagnosis of Ehlers-Danlos Syndrome.

Finally having an explanation for all my health problems is validating, frustrating (how did it take 28 years to diagnose?!), and a little devastating. There is no cure for EDS. The treatment is focused on preventing serious complications and relieving symptoms. So, although there may be a way to better manage my symptoms, I’ve lost the hope I had that my health issues could get better and go away altogether.

These past few weeks have been a rollercoaster of emotion, but I’m optimistic that having a plan in place will relieve some of my anxiety. Plus, writing about my experience here will hopefully be a bit therapeutic.

Future posts will likely be about developing a management plan, experiences leading up to my diagnosis, and maybe a few posts related to my dog or craft projects 😊

If you’re reading this and also have EDS or other chronic illnesses, know that you’re not alone! If anything has worked/not worked for you, I would love to hear about it.

Xoxo,

A

Me and my greyhound Tones