So….I guess my being angry” post has come back and bit me in the butt. I guess I need to send more positive energy into the world….and hope it will then come back around to me.
I WAS finally starting to feel a little bit better from yet another relapse that I had at the beginning of November. I had been spending most of the time that I was not sitting at my desk in bed….too physically exhausted to do anything beyond just getting myself through the workday. The chronic fatigue was so debilitating. I was only showering once every 10 days as the act of taking a shower left me lifeless. I even went 3 months before I could muster the strength to even do a load of laundry.
The amount of time that I was spending in bed….especially over the many months long term…had been increasing and I was starting to get really concerned about my bone strength…overall loss of muscle tone for even doing basic things such as pushing a vacuum cleaner across the floor…and the weaker I was getting…the harder and harder it was becoming to even try to get myself back into some sort of basic physical strength.
Let me say that before I got sick…I was a runner..lifted weights..did cardio…had the stamina to work 14 hour days and then clean closets afterwards. And my being so bedbound so totally goes against the type of person that I am. But the chronic fatigue, weakness, and exhaustion that would overcome me with even the slightest amount of exertion always seemed to land me back in bed.
Last week I, for whatever reason, was starting to feel a bit more energy. I am not sure why…but I was just so grateful for finally being able to do a little cleaning around the house, organize some paperwork, be a bit more conversational with people at work (as opposed to always having my door closed)….and thinking I was finally getting back to baseline before this most recent relapse. I even started thinking I need to try and start some physical therapy if I took it slowly. I even did something I hadn’t been able to do in over 3 years….I drove my car. Not far…but i was sitting in the drivers seat of my car. I was beyond excited. I was so grateful to be able to do something that was normal. Like a normal person. A step forward.
But today…..several steps back. And a very harsh reminder of how not normal I am. I am not a normal 56yo woman who should be in the prime of her life…but rather one who has the lifestyle and frailty of someone in their eighties.
Today…..I crashed. Literally. I tripped on a curb and went crashing to the ground. Body slammed against the concrete and landed into a big puddle of water. My left foot twisted while I fell onto my right side. The wind was knocked out of me and I couldn’t breathe and blacked out for a few seconds. I opened my eyes and everything at that point was in slow motion….and in that moment I felt every symptom of my illness in full force. My mouth became intensely dry. My head started tremoring. My muscles started cramping. Tingling in my face and extremities. Nausea. Burning. And…I could not move….at all. I was slurring my words. I could not understand what anyone who ran up to me was saying. I have taken falls before….when I was a “normal” person…and I would just catch my breath, get up, brush myself off, and limp away. But in that moment, lying on the ground, this time, it was apparent that I was so not normal.
There were two medical residents coming out of a Starbucks that saw me fall…and came over to help. They tried to get me to stand up…and I couldn’t even sit up. I didn’t have the strength in my arms to even crawl out of the puddle of cold water. They kept asking me…”Can you hear us? Did you hit your head? What is your name? Can you move? Do you have a medical condition?” I wanted to scream…..”YES!!….I have a medical condition..and it currently is completely paralyzing me. I am sick…PLEASE….SOMEONE….take an interest in what is happening to so many people who are sick with this illness and HELP us. Please help make me normal again. PLEASE!” But all I could do was lay there…in the puddle of water…knowing that there were now a dozen people along the street that were gathered around staring…at me.
I eventually was carried to a car and into the closest ER. The ER that with this illness I have been to many times before. The ER that I didn’t want to go to. The ER that I have spent hours upon hours in when I was hospitalized twice. The ER that I have argued with about this toxin, this illness….the ER that I am sure has the notes at the top of my record that flashes “crazy woman that thinks she is sick from Botox”. The ER that admittedly gives me PTSD. But that is where I was taken.
And it starts. “Hello…are you on any medications?”. (Yes…but it is not for the reasons that you think I am on them). Do you have any medical conditions? (Yes….and I am sure that you have already looked at my medical records so why are you asking me? I tried to explain my condition to you before but you have no understanding of it). Have you had a tetanus shot? (No…I am not up to date on my tetanus and I am quite certain that if you gave me a tetanus shot now..it would likely kill me. Side bar…for those of you that don’t know…tetanus is a close cousin to botulinum toxin and a tetanus vaccine is NOT a good idea for someone suffering effects of botulinum toxin poisoning).
The nightmare of being in a hospital with what would normally be a routine ER visit…sprained ankle….abrasions….but nothing about any medical visit is normal for me (us) anymore. Refused the tetanus shot. Refused pain meds (can only take child doses). They didn’t understand why I was tremoring. They didn’t understand why everything was so painful. Why an otherwise seemingly “healthy” women could barely move. I just told them I had fibromyalgia, CFS, and MCS. Three things mainstream medicine still doesn’t really understand…but at least they have names.
Six hours later…no broken bones but possible tear in foot tendons or ligaments. I now have a walker as I don’t have the body strength for crutches. Followup with specialist is needed.
Yes, it could have been worse. I could have broken a bone. I did that already one month before my 2011 relapse. I sometimes wonder if that trauma caused it. It could have been a car accident. I could have stepped on a rusty nail. It is just a bad sprain and possible tear and a bruised hip and elbow.
But I am again bedbound. Again. Completely. When I was bedbound before…I could at least get up and go to the bathroom. Now I Can’t even bear the slightest amount of weight on my ankle. Excruciating pain. Can’t bear weight on my right side from the bruising. And…I feel like I have been hit by a truck. Literally. My poor general state of health is painfully obvious by how a simple sprain is horribly traumatic for a weak, already traumatized system. It brings all of the fears of what if? What if this was worse? What if I need surgery? I am already at risk of losing my job. What kind of relapse will this trigger? What if what if what if.
Such a short-lived moment of feeling that I was away from the hours and hours of being confined to my bed….at least for awhile. :(