Never Thought I'd Have To Learn How To Walk Again
Photo by Merelize from Freerange Stock
Perseverance is not a long race; it is many short races one after the other. — Walter Elliot
Looking at that quote, I smile, albeit somewhat wistfully. At this point in my recovery, I cannot race, not even a short one. At least, not literally.
But I have had numerous figurative small “races” and wins since a split second in time changed my life in ways I could never have imagined.
The day had started simply enough. And it had ended in a terrible injury that would require surgery to my right leg. I had torn the quadriceps muscle right off the bone with such force, it had ripped my kneecap into pieces. I didn’t even know that was a Thing.
I would require surgery to reattach the muscle to the bone and put the kneecap back together. Knowing nothing about such injuries, and only ever having heard 6–8 weeks for people to have a cast on a broken arm or leg and then they’re good to go, I figured that’s what lay ahead.
I couldn’t have been more wrong.
What began as a nasty injury and surgical repair quickly turned into a potentially permanent and rare condition that could mean I will never walk unassisted again.
At the time of this writing, I am in my 10th month of this journey, with no clue about when — or if — it will end.
But I’m getting ahead of myself.
The Leg
First, I had a heavy, thick foam leg brace with metal rods up the sides. The brace went from the top of my thigh down to my ankle and kept my leg straight 24/7. I was not allowed to remove it. The brace was held in place (not very well) with several velcro straps across the front.
I was allowed to bear weight on the leg — with a walker — so at least I could get to the loo or fish something out of the fridge. However, from about two days after the surgery, I had constant, excruciating pain in my lower back. I thought it was from the hospital bed but even after returning home, the pain continued, gnawing, burning, relentless.
I was lucky to catch a couple of hours of interrupted sleep each night. Twenty minutes here, 30 minutes there…but I was awake most of the time. The days — and nights — were endlessly long and miserable. I was exhausted. I had no appetite. I was alone most of the time, lying on the couch and trying to adjust to this new reality.
At my first check-up with the surgeon 17 days post-op, he said the back pain was due to the brace keeping my leg straight 24/7. This unnatural position puts extreme stress on the lower back. He compared it with going to the gym and working out 24 hours a day, 7 days a week, putting constant stress on muscles that weren’t used to being used that way. I got a different brace that day, still full leg but it was hinged at the knee. It was set to allow a 15° bend (which is hardly a bend at all) but I had to lock it on 0° if I was standing or walking. I had hoped that this slight bend would help my back pain. It did not. Still, this was progress.
But it would be 3 hellish months before that pain finally began to ease.
Strange Symptoms
In the meantime, I had been plagued by a collection of other symptoms that began shortly after surgery:
bladder issues with frequency and urgency that were not infection — just a nuisance (2 months)
sharp, intense pain that would settle in my foot and/or ankle, moving from place to place but making it excruciating to walk (still have this but it is beginning to ease)
hypersensitivity to the slightest movement of my foot or toes with pain so severe, it brought me to tears (several months)
I could not stand the slightest touch of anything on my leg around the area of my knee. My soft yoga pants, a whisper of a bedsheet — they were like burning sandpaper. I had to wear my pants with the leg rolled up above the knee for the first 7 months. Sleeping was already difficult enough with pain, but there was the added assault by my sheet daring to touch the skin near my knee. It lay awake a lot holding the sheet away from my skin.
my right foot turned outward, yet it felt like it was as straight as ever and when sitting, I would swear my feet were exactly side by side, but on looking at them, the right foot was well ahead of the other. It is extremely painful as the foot has been yanked out of alignment with the leg. It has greatly contributed to my difficulties with mobility.
An Unexpected Diagnosis
At 9 weeks, I had my second appt. with the surgeon. He said the X rays looked good, the knee was healing well, the muscle repair seemed fine, but I would still need the brace for at least another 6 weeks. Okay, great, the knee is healing. So what’s up, Doc? What about all these other weird things?
“Complex Regional Pain Syndrome” — CRPS. There are two types; I have Type 2, the one you don’t want. CRPS is a rare condition about which even many people in the medical profession know nothing. If you’ve seen the Netflix show, Take Care of Maya, you’ll know a lot more than many doctors.
What Is CRPS?
In most cases, Complex Regional Pain Syndrome occurs after an injury, fracture, surgery, trauma, or nerve damage. I had all five in this situation. Yay, lucky girl! Do I get a prize? 🎉🏆 (More like 💣) .
No one knows what causes CRPS but the Spero Clinic has this to say:
Often referred to as the “suicide disease,” CRPS is a condition associated with the imbalance and malfunction of the autonomic nervous system.
It gets its nickname because it is said to be the most painful chronic pain syndrome known to humans, often driving them to commit suicide.
According to the Mayo Clinic, “Treatment is most effective when started early. In such cases, improvement and even remission are possible.”
Some of the signs and symptoms include:
Continuous burning or throbbing pain (generally arm, leg, hand or foot)
Changes in skin temperature, sometimes sweaty, sometimes cold
Swelling and stiffness
Extreme sensitivity to touch or cold
Skin colour can change (e.g. red, blue, white, blotchy)
The texture of the skin can change in the affected area, becoming tender, thin or shiny
Changes in hair and nail growth
Muscle spasms, tremors and weakness (atrophy)
Decreased ability to move the affected body part
A System-Wide Problem
And as if all of this isn’t odd enough, CRPS can spread to all parts of the body. According to Painscale.com, it can cause fatigue, weakness, lethargy, depression, brain fog, memory loss, and cognitive changes. It can also cause cardiac, respiratory, gastrointestinal and urological complications (Ah…the bladder issue I had).
Also, limbs turning inward or outward, not being in alignment with the opposite one — yep, that was me, too. The foot is still not back to normal, but is not as bad as it was.
These are but a few of the potential problems — and one of the strangest is that the pain and issues from an injured limb can move to another limb!
“Complex regional pain syndrome (CRPS) is a painful and long-lasting condition. CRPS usually causes severe, constant, burning pain in the affected arm or leg…this condition can be triggered by damage to nerve fibers in tissue that has been injured. The cause may be autoimmune, as autoantibodies (antibodies directed against normal tissue) targeting nerve cells have been identified in people with CRPS. Experts believe that in CRPS, nerves become overly sensitive. Painful signals become more painful. And common stimuli, such as light touch and temperature changes, also are experienced as pain.”
PTSD Connection
Interestingly, many people who have CRPS also have PTSD. The National Library of Medicine says that studies suggest CRPS patients “may have increased rates of traumatic life events.” It goes on to say:
“We collected data from 152 patients with CRPS, 55 control patients and 55 age- and sex-matched healthy individuals. Fifty-eight CRPS patients (38%), six non-CRPS pain patients (10%) and two healthy individuals (4%) met diagnostic criteria for PTSD. Initial PTSD symptom onset was prior to CRPS in 50 CRPS patients (86%) and during the course of CRPS in eight patients.”
They concluded: “Posttraumatic stress disorder (PTSD) is more frequent in patients with CRPS than it is in the general population.”
I was diagnosed with Complex PTSD just over a year before this happened and was/am still very much dealing with it.
For Better or Worse?
When caught early, CRPS can be treatable, although it can take months or even years. My reflexologist has had it for 18 years…although it doesn’t flare up too often anymore. She won’t tell me how many years it was before she was functional. To be honest, I didn’t ask and I don’t want to know.
As for my own healing journey, it has been one tiny step forward, and often a step or two — or more — backward. It has been a fascinating (and frustrating) time of constant adjustment, figuring out how to do things I used to do easily, understanding that there are things I am not able to do such as change a light bulb, reach into my lower cupboards or much of the upper ones, or the back of the fridge. Everything has to be at the front of any shelves, as I live alone and have had to adapt what I do and how I do it. Many things just don’t get done.
I can’t get down on the floor or back up again (I stare longingly at my fireplace on rainy days, but can’t tend to a fire). I can’t have a shower (unable to stand). I can’t go for a walk or do my own errands. I’m confined to my home — for now.
I still have a fair bit of pain from right hip to toes, as well as electric shock nerve pain shooting through any part of that leg at random times. I can almost straighten that leg completely, but I can’t bend it fully yet (working on it! And getting better!). I do 3+ hours of rehab daily.
I used the walker for 7 months and then gradually moved to crutches. Now in my 10th month, on a good day I can use a cane to hobble around my home but the crutches are close by. Pain and balance are the challenges. But what a treat when I can use the cane! Finally, I have a free hand to carry a drink or a plate of food! I’m no longer restricted to what I can put in a bag and carry to the table (when you use crutches, the bag swings all over the place!).
About 6–8 weeks ago, I worked out how to manage the stairs by myself (with crutches) so I can take out the rubbish and get downstairs to do my laundry (which gets thrown down and dragged back up in a duffel bag). A side note about the laundry: Normally, it takes about 15 seconds to walk down to the washing machine. The first time I did it, it took 12 minutes to get there, and 17 minutes to get back upstairs. 🤦🏻♀️ But gradually, I’m getting a little faster, so that’s exciting!
At times, I have stopped halfway up the stairs, exhausted and in pain, fighting tears. A few deep breaths and some inspirational “I can do this!” self-talk and I go again. Kinda like life, right? That’s how we get through the hard parts so we can enjoy the good stuff.
And then…sometimes I feel like I’ve made progress and think I might be able to walk again without assistance someday soon?! — only to have a relapse and slide backward. Knowing this is typical of CRPS is helpful because I also know — or at least, I believe and trust — it’ll pass and I’ll get better again. Also like life, right?
I focus on the wins. I don’t think about where I was at the beginning of this journey. Instead, I like to think about what I can do now — like get dressed without help. Put on my own knickers. Prepare simple meals. Sleep without a leg brace. And I can’t even tell you how incredible it was after 6 months to finally give up sponge baths and be able to get into an actual bathtub.
I don’t care if “they” say CRPS can be permanent. I choose to believe in this magnificent healing machine that is my body. I visualise myself outside and going for a walk — and dancing! Oh, how I love to dance…I know I’ll get there. 💃🏻 Just gotta be patient, forget about where I’ve been, and stay focused on where I want to be.
One foot in front of the other. And without a cane or other appliances, please. 🙏🏻
***
Feeling stuck? Need guidance or a numerology reading to help you with clarity? Visit my shop for self-help tools to improve your life
Spiritual Arts Mentor and Master Teacher, Liberty Forrest, guides you in discovering who you are, why you’re here, and how to follow that path.