When I was first explaining EDS to my husband, he joked around with me and said ” so is all of your connective tissue going to deteriorate and you will just melt down into a puddle? I will have to carry you in a bucket”. Being the geek family we are, I immediately thought of Odo, the character on Deep Space nine who was a changeling and used to retreat to a bucket to rest and meditate. I cracked up.
“No”, I replied, “I will not be bucket-bound”.
“But it could be so much fun. I could carry you around anywhere I wanted- nothing you can do about it ;-)”.
“Sure”, I said… ” and put a lid on it takes on a whole new meaning”.
Now first- no comments about how horrid he is. This was Exactly the tone of humor we both needed to deal with this and sort it out. No cure. But no horrid progression to a bucket. Ok, we can deal.
On days when I am not having a good day. When the pain creeps up in spite of the meds. When I try something and am just not strong enough yet. He looks me in the eye and says ” yep, I see a bucket in your future”. I immediately counter and tell him to give me a year- I will be an Amazon. ( God, who doesn’t love Wonder Woman?) . It has become the banter that keeps me crawling out of the bucket and into WonderWoman status.
Luckily, I have found some resources that are helping. Here is what I know so far, and what has worked for me. I will list the basics here, then tackle each one in more detail in future blog posts. ( I am NOT a medical professional. You should always discuss things like this with your Dr, if you have one)
- Exercise is critical. Luckily some Twitter searching brought me @apetersen219 and from there, her blog AnneVs EDS. It was through her I found Dr. Mark Lavallee, and I am excited to be able to start working with him in June. This is where I heard the story of him going from wheelchair for most of his youth, to running 5K races. I was sold on the exercise bit. I define this a part of my daily medicine and stick with it.
- Stress is Killer. Not just in the obvious, “stress makes me feel bad” way, but in biochemical ways as well. Stress increases levels of Cortisol in the body. Cortisol Destroys Collagen. When your collagen is already messed up, the last thing you want is not enough of it, too. The things your body interprets as stress are not just the things like pressure at work or financial bill paying. They also include things like sleep deprivation, chronic pain, sitting/laying in one position for too long, and bad nutrition or dehydration. I am fighting this in many ways.
- Nutritional supplements. This one frustrates me a little. I hate taking lots of supplements. I am a believer in whole foods, eating balanced and making sure needed nutrients are in your diet. But for now, it seems there are some things that my body needs in higher doses than I could consume, so I am supplementing. Hopefully, this is not forever. I supplement:
- between 2-4 g Vitamin C ( critical for collagen formation) per day ( just depends on how many times I remember to take the danged pill. I always remember to take with other meds, so at least 2).
- a “stress” vitamin. This is a mix of B Vitamins, more vitaminC and zinc.
- a regular muti-vitamin
- Anti-inflammatory meds. I take naproxen by prescription. When I see my rheumatologist for the first time in mid-April, we will talk more about options on this one, but for now, it works.
- Diet Changes. I am still exploring these, so they are not set in stone by any means. So far i am working hard to increase my dietary Omega-3s ( has great impact on Cortisol production and reaction) and trying to cut refined sugar back out of my diet ( damn you Peeps), as I have recently learned that Sugar can block the absorption of Vitamin C.
- Cold packs. Especially right after exercise. But also at random times during the day when I ache. And to go to sleep at night, and immediately after I wake up, for the half hour I just lay in bed and am not up and around yet. At first, I had a limited supply of these, and in Jan/Feb developed a habit of going and laying or sitting in the snow piles right after exercise. ( It was a silly suggestion, then a dare, and then, well- it really worked…). But snow melts, and I am lucky to have a darling sister in law who made me a dozen 5X12 cold packs filled with flax seed. I honestly hate being too cold, so you will often find me in a cacoon- with a layer of cold packs, then blankets wrapped all around in an attempt to get warm.
Well, there you have it- from a bucket to Wonder Woman in 6 ( not so easy) steps. How do you deal with EDS pain/limitations? What works( or has failed) for you?