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I humbly apologize for the delay in posting. This excerpt is going to highlight a very low part of my journey and the dark side of this disease. It has been very difficult to talk about and I have second guessed leaving this part out, but it is my truth. I also want you to know that these were my thoughts at that time and it does not reflect my current mindset.
March 26, 2022, the day after my injection. There was no way that I could get comfortable. Between the constant discomfort in my leg, adding in now pain at the injection site, located on my left lower back I was starting to spin out of control. I was getting angry. I understand that pain relief is not immediate but when you can only sit in one position, I could only travel down into that dark hole. I was spiraling internally, and I did my best not to let my family know. Anytime I was asked how I was doing I would say "the same".
The coming days were on repeat. The same pain, not sleeping and looking at the same walls in my house with no positive end in sight. It wasn't until about 1 week after my injection that I realized our annual Spring Break vacation was just over a week away. Each year my husband and I would take my stepson to Florida for Spring Break. There was no way in the world that I can go.
I started bawling hysterically. Up until this point, there was not any type of event, important or not that I had missed. Accommodations were made or things would take place at my house so I could still be a part without having to leave the house. This was different, I am actually going to have to stay behind for this trip. WHY? Can't anything go my way? Haven't I been through enough? I guess not.
I yelled for my husband, and I had tears in my eyes as he asked "What's wrong? Is the pain getting worse?" I said, "I can't go on the Spring Break trip, there is no way that I will be comfortable or be able to maneuver myself around." My husband, the supportive and positive man he is said "Yes, I will do whatever it takes to get you there or we will cancel the trip". I told him again that there was no way I could go, as it is I can only leave the house for a doctor's appointment. I cannot sit, I have to be reclined with my leg elevated all day, everyday. And if that wasn't enough, I would never allow this to be taken away from my stepson, he looks forward to this trip every year. My husband and I went back and forth about this daily and I insisted that I wanted them to go and that I would be fine at home.
I could very slowly get around the house, I had crutches as an aid, and I repeated I would be fine. I could see on his face that he was gutted ad he asked about our dog, Quinn. I said she will be fine, we will be fine please go and have a good time.
Ultimately the decision was made and my husband and stepson left for vacation. After they left, the dark side of my brain began to surface. I think up to this point any feelings of anger and frustration were valid, this was not that. I laid in bed, staring at my blank TV screen and I said in my head "Why am I here?" This was not "why am I here and not on the trip", this was "I am suffering in pain, why should I continue living?"
I looked at my Pain Pill bottle and thought "I could just take all of these right now and put myself out of my misery". Why do I want to keep on living if this is what my life is going to be like. Part of me wanted to continue fighting and the other part of me was exhausted from fighting and wanted to end it all.
Anytime my husband would call to check in on me, I put a smile on my face so as not to alarm him and when we would hang up, I went to the dark side. I would continue to sit in silence just thinking about what it would be like if I died. A life without pain, a life without crying, a life without anger, a life without frustration.... "A life without" were the statements I would make in my head to try and justify why I should end my life.
Quinn, my goldendoodle puppy knew something was up. She had become so in tune with my emotions and my body language that she would nestled herself into me as close as she could get as if to say "Mom, I am here, don't leave me".
This was the beginning of an entirely new and emotional battle that would eventually come to a breaking point, I just did not know when it would be or what way I would go.
My husband and step-son came back from their trip and I hid my emotion and all of the thoughts from not only both of them but my parents and rest of the family. I acted as if everything was fine all while my body was screaming inside. I would look at anything that could be a means to end my life. To say that this was the scariest point in my life was an understatement. This daily torment, the mental back and forth was making me ashamed and scared. On April 24, 2022 I made the decision to join a support group because my knee looked like it did below, red, swollen, hot and painful to touch. When I told my husband that I wanted to, I think he was confused as to why I wanted to do that because he was here to support me. Little did he or anyone else in my family know what was going on in my head.
After I was accepted into the group, my heart began to break even more. As I would read the journeys of other patients such as myself, I would begin to cry. There were two extremely impactful stories that I read about. One was in regard to their spouse leaving them due to the amount of pain they were in. This individual was very similar to myself, limited mobility, low energy and in excruciating pain due to the limitations of this painful disease. Because of this person's medical condition, their spouse left them. Another individual chose to amputate the limb that was affected by CRPS.
Both of these situations put me into a darker hole. I kept thinking in the back of my mind, what if my husband can't handle this and leaves me because I am immobile. And the flip side of that, should I cut my leg off and live with phantom pain instead of real pain? This started to put me in more of tailspin. At one point, I told my husband about the amputation patient, and I let him read some of the journeys of other CRPS patients.
Up to this point, explaining CRPS to anyone, including my husband was very difficult and tough for anyone to understand unless they were living it. I think reading about the signs, symptoms, fears, pains, etc. of other people living with CRPS helped him understand more what I was going through. Although he was beginning to understand the darker side of this disease little by little, he still had no idea that I was on the very dark mental side of this condition.
I have so much admiration for those individuals who have shared their story. You have given me the strength to take this leap and share mine as well. Reflecting on this now, at the point that I am at in my life has been very emotional to go back and relive. I realize that making this choice to put myself out there will come with questions, whispers, doubts, etc., but I am not ashamed. I know that topics such as this are tremendously scary to talk about but to talk is to heal :-)
Tune in for more... Thank you everyone!
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