How it all began…

Surgery. Something I dreaded for many years, and something that became a necessity in order to enjoy my life to the fullest from young adulthood into what I hope will be my 90’s.

So, I had the surgery, got past through my anxiety and fears. Got through recovery, and many bumps in the road to recovery and the challenges of learning how to walk with crutches while feeling doped up on pain killers, learning how to bathe with a cast cover, learning how to dress myself with a cast up to my knee, and learning how to accept help; something I’m not always that great at. I’ve always been independent, and always wanted to prove to myself, and those around me that I am capable and competent to take care of myself, and all that I may need. I have a hard time accepting help, I have a hard time accepting anything from others, I’m not too sure why, and this is something I continue to struggle with and try to overcome, as I continue to be more dependant than independent. 

The first night I had my cast change I remember not being able to sleep and thinking I was going to ‘die’ of the pain I was experiencing. Excruciating burning and pins and needles feeling. Nothing I did could relieve the pain. It was the middle of the night and I fraught over whether or not I should wake my family to get to the nearest hospital, or whether or not to suck it up, and wait till the morning. Well, here we go again, struggling with the fact that I have a hard time accepting the need to rely on others, the need to put someone else out of their way. Numerous texts to my boyfriend at 2,3,4 & 5 am hoping that maybe that would wake him so I could cry to someone other then myself, and my pillow. Texts to my moms phone as I knew while I was recovering at her house, she kept it by her bed. Hoping that each vibration would wake her up, I sent text after text as I felt better about that waking her, then me crutching my way into the room to wake her……well, nothing woke anyone up, and I laid in that room tossing and turning, with tears making the entire pillow look as if it had just been washed. Pain killers every 4 hours as directed didnt even help. The next day I got my cast fixed and it seemed to help alleviate some of the pain. This, reflecting back, was the first day I struggled with what is Complex Regional Pain Syndrome (CRPS).

From that day forward, I struggled with feeling as though my foot was on fire, as though pins and needles were pricking me. I thought it was maybe the healing that was going on. And, like my usual self, not wanting to seek help or tell anyone, I left it and continued to take my pain killers, this time, low strength ones. Nothing helped, and I waited for 5 weeks until the cast was off.

The cast is finally off and I am into an air boot. But my foot didnt look right. It was blue and red. with blotchy white markings throughout the discolouration. But, this was not a concern to my surgeon, so I tried to ignore it. The burning was beginning to flare up again. I went to a walk in clinic, and received more traumadol, as this, the doctor said, would help the pain. It didn’t. I stopped taking it, and kept living with the burning, tingling, pins and needles, better yet, feeling like I am being stung by bees and my foot is on fire.

Next surgeon appointment, again, I bring in a list of all the symptoms I am going through as to not forget a single one. My physiotherapist was concerned about all the symptoms and physical appearance of my foot. But yet, even the discoloration and all my pain and symptoms, my surgeon disregarded me. Sent me home with a prescription of anti-infalamatory and booked a follow up for 4 weeks.

Tired of being disregarded, living through the constant and excruciating pain, at a level that I would never with on anyone, I booked an appointment with my referring physician, a foot specialist. He looked at my foot, rhymed of a number of questions to which I said yes or no to, touched my foot and requested a number of X-Rays. For the first time, I felt, finally someone, other then my physiotherapist, was taking me seriously. Finally, I may have some answers. The X-Ray, might I add, the first since surgery, showed osteoporosis developing since my past scans pre-surgery. I was given a requisiton for a bone scan and we told this is a serious concern, and that I have CRPS. Finally, an answer. Finally, the ability to know what is actually wrong, and what can be done….so I thought. CRPS is a rare, not well studied disease. There is no cure. And is unpredictable. From this, he prescribed me some medication, and requested a follow up.

The next day, I was at my surgeons for my follow up. I didn’t tell him anything. First another surgeon came in, he looked at my foot, asked me how I was doing, I said “nothing has gotten better only worst”, I continued on to rhyme off all my symptoms I had been dealing with for the past 3 months. He said you have CRPS. I was relieved. Yet another doctor validating what was going on. And diagnosed me with the same thing as my foot specialist. I was at a 2 for 2. Then, my surgeon walks in, asks a few questions, and now with my mother and the other surgeon in the room, he too said I hate to say, but you have CRPS. I was 3 for 3 and finally, not feeling like I was losing my mind with what I was experiencing.

Finally. I couldn’t stop feeling a deep sigh of relief. I couldn’t stop feeling happy, despite the excruciating pain. Why, you might ask. I felt I finally could understand what I was going through my searching what CRPS was, searching for others blogs and viewing different forums of people discussing what they are going through and what they are doing. I felt like finally, I could understand myself, and understand that I am not alone. The fact that I am not alone was so reassuring and continues to be the one thing that keeps me going day after day, hour after hour. I can read someone else’s story and struggle, and realize that they too are experiencing what I am, I am not alone. And if you are reading this, reading my story and going through the same thing, living with CRPS, you are not alone. I have never written a blog before. Never felt I had something meaningful to contribute. But I hope as I share my journey, as a way for me to cope with this pain, and not feel alone, that I help you too. And that you feel that you are not alone.

Day after day, I feel alone, I feel as though no one can empathize with me or truly understand  and comprehend what I am going through and how I feel. And thats OK. I would never want them to understand, as I would never want them to go through what I go through. Each day, each hour, heck each minute, is different and unpredictable. I put on a brave face for everyone. I hide my pain, I hide how I feel. While I may limp and walk slow, they often do not see me cry, I cry inside with each step and put on a smile, or talk to try and distract myself from the pain. I may at times complain to my family about the pain, the degree to which my pain truly is they do not know. I may at times call my partner while he is at work and cry. But still, he does not know the extent to which my pain is. Most days, he sees me limping slow to my destination, trying to do things like stand for periods of time to wash the dishes, or clean the kitchen, he does not see or know that each minute I am in excruciating pain, like I am standing on hot coals, or someone is living in my foot having a constant camp fire. He does not know that each step the pain intensifies. He does not know that I am really not as brave as I let myself look. When I am alone. I cry. I let out all the tears I wished I could have in front of people. But I don’t. I don’t want them to truly  know what I am going though. Because they care and I know, it would break their heart truly knowing what I am going through. As for friends, I don’t see them too much as going out with friends isn’t what I want to do. I want to be at home where I can have my leg held up with my hand under my calf so that it its touching anything as even the gentle brush of a blanket hurts. I want to not have to explain what I am going through, as me weakness shows when I talk about it. I don’t like the attention from others. I don’t like the focus on me. I don’t like others worrying about me. So, i keep it to a minimum, and keep to myself. If i see my coworkers, or friends, I hide what I truly feel. I deflect the conversation and I pinch my finger under the table or use my tongue to push the top of my mouth to deflect the pain, to ignore it so it doesn’t show. My brave face is on and stays on. Explaining it to people who insist you know they don’t understand, they cannot quite comprehend what you’re going through even through your description. I know they think “well she seems okay now”. And that is only, and merely only, because I am doing everything I can to hide my pain, to hide how much I want to hold my foot high up as to not have it touch anything. Hiding my tears inside. Hiding my desire to be at home, or alone.  And while they may not understand that or me, I know, if you’re reading this and living with CRPS, that you know. That you understand. That you empathize. And, tn182900450_30769569_3603hat you too may feel like me, may feel misunderstood, keep the brave face to protect them. And in knowing that you are out there, I feel understood, and I feel empathized with. I feel that you understand to the degree that I do, the pain, and the fear that I feel. We need to remember that we are not alone. As you sit on the other side of the screen, I empathize with you. Perhaps you have tears rolling down your face as I do right now, writing this. As I do each time I read someone else’s story and feel a sense of relief that I am not alone, that someone else would understand what I am going through. Maybe your tears are a sense of relief, or perhaps they are from the excruciating pain you feel right now, or a mix.

But know this: you aren’t alone. I sympathize with you. I understand you. I acknowledge you. I appreciate you reading this, as it makes me feel less alone too.

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