On December 26th, 2012 I was working. Boxing day is always hell to work, but I had a spring in my step. The day was flying by, I was by the front door of the store I was working in greeting customers. I worked in a video game store, and shortly before Christmas we had a giant statue delivered to the store. For those of you who know video games, it was Connor from Assasin's Creed III. That day we had customers filing in and out, many of them wanted photos with Connor. I would use their phones to take their photos, so many of them where kids totally in awe of Connor. The air was festive and fun and I was having a blast. By the middle of my shift I started getting cramping in my left foot that wouldn't go away. It lasted for almost an hour, eventually I had to leave work altogether.
From that day onward I couldn't work more than a few hours at work before my foot would cramp up. I tried everything I could think of. Wearing different shoes and socks, drinking more water, double checking my vitamins, I even cut out all artificial sweeteners trying to find the cause. I ended up taking several months off of work. I finally identified that the cold affected my feet and that staying indoors and keeping them warm where the only ways to combat the foot cramps and spasms. One day after several months off of work I worked 4 hours then left because I could barely stand. After I got home my foot spasms went away and I felt much better. I went out to the mall with family, and partway down the mall my left foot cramped right up. I had to drive us home in snowy, slippery streets during evening rush hour with cramped toes and feet. I put my feet up and didn't stand up again for 6 hours. After the six hours I tried to get up to go to bed and they started spasming again. My toes wiggling all over the place all on their own. The next day I could barely walk, my feet ached so badly. Shortly afterwards I handed in my notice at work. I couldn't do simple things without my feet being affected. I had no idea when they would spasm or cramp, and no idea why they triggered sometimes and not other times.
During this time I was also pregnant with William. During the summer we ended up travelling a lot to a nearby city to go to a Women's hospital. I didn't have any spasms or cramps all summer, but my feet felt like lead. They felt heavy and unused. You know that feeling you get in your calf, right before it cramps up? My feet felt constantly like that until late August. I was scared to go grocery shopping or to the mall because of that feeling. I knew that if my feet cramped up, it could be hours before I could walk again. When you're heavy and pregnant that's a scary thought. (I mean, how could I go pee if that happened?!). That whole summer I was traveling weekly or bi-weekly to see doctors. Then in my own city I had to go to the hospital several times a week for monitoring. It wasn't hard physically, but it was stressful.
William was born screaming on September 19th, and my feet where the last thing from my mind. I survived the summer with no spasming at all. I naively thought that I was done with whatever that was. I finally felt normal, taking my baby to stores and getting some walking in without feeling like a bowling ball was in my pelvis. I could shop for baby items, it was freeing to get out of the house after having a complicated pregnancy.
The first day it snowed this fall I decided it was a beautiful day to take William out in his new stroller. My mom was visiting and wanted to go shopping, we decided to go to the mall. It was fun walking around the mall, with my son and my mother. We made it across the mall and into Target. I needed bibs, it was right before Halloween and I was looking at bibs with Frankenstein on them for William. My feet started with the familiar spasm. Just a little. Like if you where to stand and curl your toes while you stood. But it kept going, even after sitting down. My toes twitched and started wiggling around on their own. I knew that if I left my feet too long that they would cramp up. If that happened I knew I was in big trouble. When my feet cramp, they usually stay cramped for upwards of an hour. Even when I stretch them and put them in warm water. It's agonizing. If I try walking after a cramp, they instantly cramp up again. My problem was that to get to my car, I would have to go across Target, across the mall, and to the very back of the parking lot where I parked. Thank goodness I had my mom with me, other wise I would have called 9-1-1. My mom got my car and brought it around and loaded us in. It took me close to 20 minutes to shuffle my way across Target, stopping every step to gauge how the spasms where doing.
After that I spiraled into a depression. I'm not ashamed to admit it. My son was a month old, my hormones where all over the place and my own disabilities where shoved in my face and made scarily clear. I thought I was over it and now they had shown up full force. For about a week afterwards I was constantly full of dread. What if William needs to go to the doctor? I can't take him! What if we run out of diapers or formula? What if my feet cramp up at home? Then I couldn't feed him, or change him. I could not take care of my son whatsoever. My worst fears where realized in my nightmares. William would have an emergency in my dream, and I couldn't take him to the ER. The roads would be bad so nobody could come help me. The last thing a mother wants is to be unable to be there for their child.
After my feet acted up in Target they where super sensitive for awhile after. If the lino in my kitchen was a bit cool my feet would get cold and start to twitch. I would hop in the bath tub to try to combat it. It made my depression so much worse to think that my feet could spasm and cramp while I was in the safety of my home. Whenever my feet spasmed I thought that I'd be okay if only I got home. But now, if it happens here.. what do I do about my baby? I literally cannot walk. What would I do?
This past spring I saw my doctor numerous times about my feet. He kept giving me time off of work, but no real answers. Finally I badgered him into getting me an MRI to make sure it wasn't MS. I also saw a Chiropractor and a Physical Therapist to make sure there wasn't something physically wrong with me. This fall I saw a Podiatrist. Every single one said that my feet are in perfect health, that whatever the problem is, is not with my feet.
Whenever I tried to talk to people about my feet I would hit the same wall.
"You just need to quit stressing, you're just making it worse."
"So and so had this EXACT same thing, and all they did was this treatment."
"My co-worker had this, this is EXACTLY like you! She said you need to cut out sugar/gluten/etc."
"You're lucky you get to stay at home and Dan will support you!"
"Aww, that's too bad. So when will you be better?"
"I don't see anything wrong with you."
"Just take time to rest."
On October 2nd, just 14 days after William was born I had my MRI. It came back clean, but my doctor wanted to talk to me about it anyways. At the appointment I talked to a resident doctor, and for the first time I felt like somebody was concerned for me. For the first time, somebody didn't say to me, "You just need to calm down and quit stressing. You're just making it worse." She was quiet, and she listened to me. She didn't cut me off, she didn't tell me to settle down and she asked me lots of questions when I was done talking. So many people have told me to quit stressing that I was starting to think that maybe I was over thinking everything. That maybe it was mostly in my head. The resident pulled my doctor into the room and they bounced ideas around and asked me more questions. They decided to contact a Neurologist and Cardiologist for me. In the referral letters they even asked that if their waiting lists where too long, to please pass me along to a colleague of theirs so I could be seen sooner.
On the way home I watched the trees go by and my vision clouded from all the tears. After more than 10 months I finally felt like somebody was taking me seriously and was concerned for me. I told the resident how I cannot care for my son if my feet "act up", I told her how debilitating it was to not leave the house for weeks on end. "I can't even go grocery shopping." I told her. She looked genuinely concerned for me. I cried all the way home, I was so overwhelmed with gratitude.
I now have to wait for the Neurologist and Cardiologist offices to call for appointments. Since then it's been an adjustment. It's wintertime and I'm in northern Canada. I do not leave the house unless I have to. I am Williams main caretaker since Dan works 12-18 hours for weeks at a time. I cannot leave the house "just to see" and then end up with my feet acting up, I can't afford that. So I go weeks at a time without leaving the house.
A few days ago I asked my Mother in law to buy Williams first Christmas outfit for me. That request ripped out my heart. My house is a prison. I cannot buy my sons first Christmas outfit, or gifts for his first Christmas. I cannot meet a friend for coffee, I cannot buy my husbands gifts, or even check the mail. It might not sound so bad, staying at home all day and not working. I get to play with my son all day. But it's hard, in fact it's harder than that. I spent my birthday indoors except for a quick excursion to the mall that made me uncomfortable. I can't go get my hair done, I can't go to the movies with Dan. I can't even run on my treadmill because that triggers my feet. My wings have been clipped. I have the view from all the windows in the house memorized.
The worst part about this, is that it has no name. I cannot join a support group and go to meetings. I cannot say, "Hi, I'm Daphne and I have ____!" I can't join a Facebook support group, I can't research it online for resources or help because it has no name.
I wish it had a name, so I could hate the name. It. I hate it. I wish it had a name, like Cancer. So when I told people I had it, they could show me some empathy. A look of shock would cross their face, and they would understand maybe just a little. They could share photos on Facebook that say, "I know someone with it. It is debilitating, and life ruining. I'm sharing this for them." Or maybe there would be fundraisers, or campaigns. End it!
I love my family and friends, but it has changed the way I interact with them. When you don't leave the house for weeks at a time, you feel consumed by this thing that's confining you. Every day that goes by you don't forget that you're in prison. It's hard to remember that other people have lives. It's hard to remember that they don't understand, that sometimes they say things to say that they're thinking of me, but I'm so twisted and consumed by hatred from it, that I feel like they're making light of my situation. Occasionally I have friends or family asking me to meet them somewhere, and I want to shout, "How can you forget?! How??" Some will even ask when I am able to leave the house. It's so hard to stay grounded and to remember that whatever is in front of me, isn't necessarily even on anybody else's radar.
"How's your foot?" I hate that question almost as much as I hate it. With that little question it feels like everything else that's happening means nothing. Like they're ignoring the fact that my prison doesn't exist. When someone has Brain Cancer, you don't go up to them and ask them, "How's your brain?" Because we all know that Cancer is all encompassing. It takes up their whole life.
Maybe these statements are clouded. Maybe my comparison to Cancer is unfair, I don't mean to say what I'm going through is like Cancer. My point is I wish people thought about what they say first. People would hopefully think more carefully about how their empathy comes across when they talk to a Cancer patient.
My life isn't ruined. I live in a decently warm home (my feet say otherwise). I am able to stay at home with my son and not work. My husband is my rock and the love of my life. I am lucky in ways that truly matter. But I am still allowed to hate it.
For now I won't be blogging. Because exercise triggers spasms in my legs and feet I am not exercising, and keeping up a blog about what I did in my four walls is not that entertaining. I will update perhaps when I see the specialists. Until then, I truly wish you all well and I leave you with a beautiful picture of my son. My little heart.
To reduce the length of this post I kept out a lot of details, including what exactly happens to my legs and feet. It's a lot more debilitating than just foot cramps, it involves my legs and feet and a weird tick that I'm getting in my body. Also know that I am getting treatment for PPD and it's doing wonders.
