I've spent so many hours in the ER, at doctor's offices, and online, trying to make sense of what is going on with my body. At 12, I thought things might be a little different for me. I didn't make the drill team because I couldn't keep time, and there were moves I couldn't make my body do. At 14, shin splints and fire in my lungs meant I had to quit the distance team in track. Because the pain was still too much after a few weeks, I joined the women's shot put and discus team. To this day, I'm sure I only lettered because my iron clad determination to not quit impressed the track coaches. The next year, I fell coming out of a starting block competing for a spot on the 4x100 team. There was "nothing wrong" but that knee still gives me trouble to this day. At 17, I knew I was different. My energy was ridiculously low. I needed 2-3 hour naps after school on most days, just to get through. My mom blamed it on my 6 a.m. class, but I knew there was more to it. A lot of kids were in that class. As far as I knew, none of them were having as much trouble as I was. One day out of ten, I could not drag myself out of bed until noon.
In college, I loved hanging out with friends. My dating life was good, and being on my own was definitely my style. The freedom! But who turns down dates with a guy they like because they are exhausted, and want to sleep? And how do you explain that when you're standing in front of him, clearly not sick? A 19 year old guy with options won't stick around long after that. My friends thought it was funny I wouldn't go dancing with them Friday nights until I got a nap first. I blamed it on X-Files most of the time, and a made up crush on Fox. I mean, he was cute and all, but he wasn't Val Kilmer.
When hubby and I were expecting our first baby, the muscle spasms and aches were almost unbearable. A friend gave me a maternity griddle that was a god-send. Still, as a young relatively healthy new mom, the levels of physical pain and discomfort seemed unnatural. Now I know that's just pregnancy with EDS, but then I thought I was just complaining too much, and being too sensitive. So we bought more pillows, and spent our evenings in the heated pool at the apartment complex. It was the only time I felt normal everyday. Good thing it was the summer in a dessert!
When it came time to deliver, doc thought a mild episiotomy would be enough. Then came my first eight pound baby, and I ended up with a 3rd degree tear. That was miserable for three months. later, my c-section incisions took 5-6 months to heal, and both popped open in multiple spots after the staples were removed. Even the doctor acknowledged the seeping opening at 6 months post-delivery was odd, but said I'm just a unique case. If only he knew. Thank goodness it finally closed. We stopped having babies after that because the nightmares about my guts spilling out at the grocery store were causing so much anxiety, I was afraid next time I'd never heal. I carried 4 babies to full term. Three of them were over 8 pounds, all of them healthy. It's more than a miracle my uterus didn't rupture considering the shape it was in when they took it out last year. "You have the largest uterine varicosities I have ever seen," and "You are lucky you stopped having kids, your body would not have handled another pregnancy," were vindicating on one hand, and terrifying on the other. How did no one see that before? That's right...it was all in my head. It appears what I called a gut feeling that I should not carry another baby, was actually my body trying to save my life. Good call my dear, exhausted body. I'm so glad I listened to that instinct.
I remember being in so much pain after taking care of little ones each day. How much I wanted to do, but couldn't because I couldn't make my body work, caused a pretty serious depression. It took all I had to take care of the kids, emotionally and physically. Everything else fell apart. Appointment after appointment, test after test, left me feeling like a bipolar hypochondriac. I was given medication for depression, anxiety, and 24 visits to a therapist who deals with "phantom pain." Great, I'm Freud's ideal patient, I thought. One point for female hysteria. Thank you, Freud. Jerk face.
Now, 11 years later, I have answers. I'm not crazy, in fact I'm pretty far from it. And I am ill. In some ways, very ill. Years without the care I needed, though I was begging for it, have taken their toll on my body and mind. And it's not as bad as it could be. Yes, I will be wearing some pretty substantial joint splints for the rest of my life, and there are so many unknowns still. I'm already looking into wheelchairs because my legs get so tired. But at the very least, no one can send me away thinking I'm making it up again. I'm not crazy. I'm not making it up. Oh, and I really do feel this sick all the time. Not a wimp-I'm an EDS warrior.
For this reason I choose to see myself as an amazing woman. Successfully raising 4 great kids, running a household (OK, the house is messy most of the time...) and kicking some serious a$$ as a full time student the last 3 years, I've decided there's not a lot that will hold me back. I impress myself, especially now that I know I have EDS, and most likely a few other obscure illnesses. I'm text book for Postural Orthostatic Tachycardia Syndrome (POTS) and Mast Cell Activation Syndrome (MCAS). Those tests are coming up in the next few months, it will bum me out if I really do have both. I also most likely have Positional Chiari 1 malformation, but have to fly to Denver for that test. Good think I like Denver. Hubby and I need a vacation, so we'll make it our 20 year anniversary trip. With the medical bills pilling up, Hawaii is probably a bad idea anyway. Darn, I really wanted to take my late morning nap on the beach. Maybe someday, and if not, that's OK, too. I'm not giving up Monet's gardens at Giverney though. Not a chance.
EDS is not how I saw things going down. All these years, I started to believe my doctors that I was just a little crazy (my close friends will tell you I am anyway) and needed to change my diet. Well, since MCAS tells my body I'm allergic to food and water, I can't remove everything I'm "allergic" to. Plus, it changes on a regular basis, so this weeks menu probably won't work next week anyway. Aside from gluten and lactose, I eat what I want now. I'll feel like hell anyway, might as well stop losing weight, and start enjoying food again. Mmmm, mushrooms! Oh, I'm skipping chicken and garlic too. Those stomach aches are not worth it!
I know there are so many of us "zebras" out there, saving energy, trying to bank up for the family party this weekend. Many of us think we are going crazy, and if we aren't we feel we certainly will. It is a nightmare having disorders so obscure, most doctors don't even know what they are. But my friends, we are not alone. We have each other, and we have faith. Ask questions, do your homework, and fight for your right to feel like crap on a regular basis. And some days, it's OK to give up and go back to bed or a few hours. All of the doctors visits, physical therapy appointments, splint fittings, evaluations, tests, procedures, surgeries, injuries getting out of bed or putting on clothes? All of that is real. Those are your stripes, those are your badges of a challenging illness. You are living the life of a warrior. EDS, POTS, MCAS and the rest of it, are not for the faint of heart. We go though hell for the basic care we need to live a semblance of normal, especially as we age. Like a dear friend reminded me today though, "When you are going through hell, keep going!"
Staying in the fight is the brave thing to do. It is also much harder than giving up. We need each other though. We need each other's stories, victories, and struggles, because they remind us we are not alone. Zebras travel in packs for a reason. I think they are a fitting analogy for what we are going through on so many levels. Keep up the fight, even if you need to be angry for an hour or a week. Do what you need to, then get back in the game.
Wishing you many spoons on your journey!
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