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I have always been very clumsy, ever since I was young. I wanted to keep up with classmates in subjects, and friends in sports, but I was never quite able to, nor sure of why. I always wondered if it was because I was the youngest of four siblings. Did I not get enough vitamins while my mother was pregnant with me? Was this all just in my head and really I was fine?
I thought everyone had pain like me. I had pain that was pretty constant in my shoulders and neck, and then other areas that ranged in pain from time to time. It wasn’t until 2017 that I realized something was seriously wrong when my health took a more serious turn.
I was diagnosed with hypermobile EDS (hEDS) in early 2020 and at 34 years old.
I knew beyond a doubt I needed more rest than most. After I had a significant increase in stress, I started having chronic migraines with tinnitus, chronic fatigue, mental fog, water retention, and an increase in pain that shot through the roof, and that I just couldn’t shake.
An alarming symptom then started – I could feel weather fronts coming in! At first, I thought my old injuries were coming back to haunt me, but it progressed into areas where no injury occurred. My next and most problematic issue that caused me to stop taking excuses from doctors was losing the ability to use my hands from the chronic pain for hours daily. I thought I was starting to have Rheumatoid Arthritis. When speaking with older people, apparently they weren’t even feeling these symptoms and some of them are into their 50’s and 60’s! I longed for the body I once had before this started, and I was sinking into a more depressed but determined state.
Not wanting to burden my family and I couldn’t even feel like I could help myself out of this hole I was falling into! I found a glimmer of hope in a Nurse Practitioner (when my primary doctor was completely booked). I had enough of feeling sorry for myself and summoned enough energy to make an appointment. She was determined to solve this puzzle that I am (because every test comes back normal and yet here I am) and eventually I was referred to a geneticist for diagnosis.
That appointment led to my diagnosis of hEDS, and I have been trying like hell since to not use pain medication but there are days when I just can’t win the battle. I miss doing the things I loved like going for hikes (which make me feel like passing out), art (which takes its toll on my hands and upper body overall), playing guitar, sewing, and so many other things.
I have changed my diet around to exclude as many things that can irritate my symptoms as possible, starting on a low histamine diet to start and then slowly added things back. I’ll admit some days I fail and want to eat an old favorite. Since changing my diet, I have more good days than bad but some days all I can do is rest and wait until I feel better. I’m learning to not be so hard on myself either.
Taking it day by day is all I can do, and making sure my children are aware of the fact that we can have fun but be smart so we don’t injure ourselves. I am seeing these same kinds of symptoms in my children. I’m glad that I can help prevent them from getting to the point I had gotten to; being bedridden most days. Knowing what I know now puts everything into perspective. The awareness of the “quirky” things as a kid that I experienced and still experience to this day give me solace. I just wish I knew things sooner, and that more medical professionals understood so that there could have been interventions sooner.
Counting “spoons” seems to help me not overdo it most days and acknowledging the signs that today is just not the day for my to-do list. I’m learning to be proud of my accomplishments, and for the things I am able to keep up with others on. I have come up with methods to help myself, so I only have to do a task once instead of dedicating energy to it multiple times: this is an accomplishment to me. I think we have a lot to be proud of for ourselves because of what we can accomplish through pain, mental fog, and a mile-long list of other symptoms.
Learning to acknowledge my body’s signals of when I need to take breaks has been such a big help to me! I never paid any attention to the signs before and pressed through but would pay for it by falling asleep around 6 pm and sometimes sleeping through the evening and being tired for days at a time. Since taking my time and listening to my body more, I have found that I am having minimal days where I’m “down for the count” and can be the mom who’s awake, engaging, and playful but rests; the employee who is very productive but takes breaks; and the spouse who is emotionally present, a helper, a friend but needs rest and alone time here and there. Being my and my children’s health advocate is what matters most so we can be our best selves!
Categorized in: Stories