Homebound, On Disability

Only temporarily. Recuperating from my broken foot.

This was the worst injury I ever had. This was the biggest surgery I ever had. It took a lot out of me. It’s been awful, yet I feel ashamed for complaining, because I know much worse: the hell of endless chronic Ehlers-Danlos illness.

I was so lucky to get surgery before 24 hours passed after my fall.

The surgeon did an excellent job, even though I wouldn’t stop kicking no matter how much sedation they gave me. He successfully bolted back together the pieces of my fifth metatarsal, and lassoed up the cracked forth. Apologies to Dr. R. from my wonky collagen gene. It makes me hard to drug and my body feels too much.

The bones healed very well. Why? Let’s guess.

I am on low dose Microzide for bone health already.

I did a bazillion leg lifts and air bikes to get circulation into my foot. Circulation heals.

So does Vitamin C, which inject every day.

I upped my dose of one 750 mg shot per day to four, until I couldn’t take it anymore (they make ya sore), then down to three, then weeks and weeks at two. The body needs more ascorbic acid in times of stress, injury or disease. Most mammals manufacture their own. Humans do not.

I didn’t suffer a sprain. Yay! That is because the bone took all the force, which is why it shattered. Is this a testament to my improved collagen and muscle strength? Perhaps. Or perhaps just the awkwardness of my landing.

In any event, breaks tend to heal better than sprains. So how can I complain?

I only needed prescription pain meds for the first week. The surgeon gave me Percocet and Gabapentin. They took well, another sign my brain has healed from my previous long-term opioid use. That was a triumph. Thank you, naltrexone.

I slept well every night. Even in my worst pain, I would wake up, wince a little and go back to sleep.

Is this me?

I had decadesssssss of painsomnia from my screaming spine, which I fixed with exercise and posture, not surgery. Way back then I heard that spine surgeries on an EDSer cause more wear and tear on the rest of the spine, leading to more spine surgeries. This was before Facebook so it was hard to find patients to talk to, and I was too sick to go to the learning conferences. EDSers I could find then reported that joint surgeries seemed to help only temporarily. Yikes. Every time you cut into a joint you are causing it damage. Maybe better just to go ahead and rest, ice and pretend you had surgery. Follow up with physical therapy.

I never thought sleep this deep and regular would be possible for me. Even as a teenager I could not get enough sleep. I used to never heal, never recover, never get better, never sleep well, never feel rested, never have energy. Now I am someone who is just a little weaker, a little higher-maintenance, a little strange, a little too sensitive. Not the disabled disaster of hopelessness I used to be. Can I really say my post-injury recovery was torture? Well, it was.

Acute Injury vs. Chronic Illness

I am still haunted by my decadesssssss of disability from profound Ehlers-Danlos fatigue, brain fog, weakness and pain, when I was so sick from EDS, in a day all I could do was water my plants or unload the dishwasher, not both.

I had so much neck and shoulder pain, I could not sit in front of my computer. I could not fold the laundry. I did not have enough mental attention to read a book. Yes, this was before I was on opioids, in case you wondered. I was totally disabled for decades before I went on long-term opioids. They only gave me enough relief not to kill myself from pain, which I still had tons of. I do get asked that, as if I was just too dumb to get a life and not end up disabled! Oh for sure!

Nope. I was just unlucky enough to be born very severely affected. My tragic case is not even unusual for EDS.

I had elite coping skills back then, which I no longer can summon. Back then I made a decision: THIS WAS NOT GOING TO BE THE STORY OF MY LIFE.

I refused to allow myself to entertain the idea that I would not one day get better.

I always fantasized about what I would do with my un-disabled life. Like someone rotting in prison.

Everyday I woke up and pushed my hopelessness and despair aside. I determined to do something, anything, to make my health better. F*ck feelings!

So when injecting ascorbic acid helped, I noticed, as I was fully focused on my physical health, ignoring all else.

A problem of Ehlers-Disaster magnitude deserves an approach of ruthless determination.

It is psychologically unhealthy to shut your feelings down, but it has appropriate uses, like f*cking survival.

EDS Fatigue

I do not think we talk enough about the disabling fatigue from EDS, how it can be impossible to spend much time out of bed. It is so humiliating and demoralizing to have no strength and energy. It is also so f*ing scary.

EDS is so poorly understood. We scramble to assign blame for our symptoms. Is it from cranial cervical instability? Mast cell activation? Devastating effects of one drug, or one injury from which we never recovered?

I make it simple. I simply blame EDS. Since this unrelenting, crushing fatigue is so common among us.

I have the energy of an average person now.

This did not come from only injecting Vitamin C everyday. The C shots were the foundation that made everything else work. Before intramuscular shots of C, I could not benefit from exercise no matter how I tried. I never felt rested. I was sick all the time.

To get un-disabled also took years of regular exercise to strengthen collagen and get the most stability I can from muscles, plus improving my brain, plus getting off all brain-draining drugs (opioids, muscle relaxants, antihistamines), plus correcting posture to relieve joint stress, plus circulation. Circulation heals. I exercise almost everyday.

Pain and fatigue are brain diseases, so do make your brain work better. It can be helped to wake up and also stop focusing obsessively on perceiving pain. There are many ways, too many to list here. Exercise is a big one.

It’s been seven years of daily shots of Vitamin C. I have never stopped improving. I am healthier beyond my wildest fantasies.

Un-disabled life is really different than what I thought it would be. It’s difficult to switch out your problems for entirely new ones. We humans tend to hold onto ours like comfort blankets.

This Acute Injury

The toll of healing these broken bones was stressful and exhausting. I might say I was depressed during my convalesence, but only for lack of a better word. My body and brain were strained and tired.

I did six weeks on crutches because post-op X-ray showed a screw was loose. I should have been walking weeks sooner, but we had to make sure that shattered bone healed and did not re-break. Fingers crossed the screw won’t cause trouble, and I can get all the hardware removed at the same time, which won’t be anytime soon. I do not want my surgery site reopened more than once.

For six weeks, I could not put any weight on my foot. That meant I could not carry anything. I had to be very very careful, all the time, never to lose my balance and go down on my broken foot.

It was so lonely and quiet at home. It was maddening.

I was desperate to leave the house as much as possible, which I could not do alone. How could I get out of my car? I needed to see people, hear noise and sit in loud restaurants.

A kind friend lent us a travel wheelchair. Mr. Pennington would push it in front of me, so no one would run into me. I would use my crutches until my arms fell off, as they are excellent exercise. Then I’d ride for a while. I developed some beautiful arm and back muscles. I intend to maintain them.

When I started walking, I got overwhelmed all over again. A few minutes on my feet and I would get shakey and pale and burst into tears. I’m not exactly sure why. It was just a lot. I blame my delicate nervous system for much of my EDS suffering. It clearly does not respond properly and needs a lot of management. The bottom of the foot is a tremendous source of nerve input to the brain.

Go Clippers!

Truthfully, since my withdrawal from opioids I have hated being at home. I stay as busy as I can and try not to be here. Why?

The acute and post-acute withdrawal from morphine and Vicodin was more suffering than even I, who has spent a life suffering, could imagine. That’s what opioids do to your brain. When you stop, your brain feels deprived of all peace, comfort, relief, love and connection. Oh, the trauma. You cannot know unless you have had the misfortune to live such emptiness, which is prolonged, profound and unrelenting if you took opioids for a long time.

So this gave me an opportunity to just deal with being at home. I feel better about it now. And that is worth something.

The view from disabled seating at Staples Center. Had to keep my swollen foot elevated.