Where do I start this? ‘Once upon a time’, I used to be a strong and healthy female. I was not athletic, but healthy and agile. I am 5’7” and I used to have a body weight appropriate for my height. I could always pin down my brother and beat him black and blue, before he beat me black and blue. I could run two kilometers without catching breath. I could hold a plank position for a decent two minutes. I could do crunches to infinity.
I traveled a lot. Loved riding a bike. Loved going for trekking with my husband. I could walk and climb miles and miles, with a backpack, without getting tired. I was always the one doing the lion’s share of ‘manual labor’ like moving the couch, dining table, fridge, washing machine, cots, bureaus and other household stuff whenever we shifted places (my hubby being in the army), because it all seemed so easy to me. I loved cooking. I loved hosting dinner parties frequently which entailed long hours of standing and cooking. And I never used help from anyone since it all seemed very easy to me.
That was me before broken bones, damaged ligaments and chronic pain.
It always happens to someone else until it happens to you.
I had initially hurt my back, few years ago, while lifting a very heavy box. I had felt a ‘popping’ inside my lower back, followed by writhing pain. At that time I ignored it completely because I had a small baby to take care of. There was no time for pain. Since lifting and bending are the necessary prerequisites of motherhood, my back problem aggravated day after day. Of course, I was doing everything the wrong way – like lifting heavy objects, bending at my back, picking my child up from bed, or from floor, bending down while giving her a bath, bending down infinite number of times daily to pick up toys and other objects scattered on the floor etc.etc.etc.
But weight gain did the actual damage. I had gained a lot of weight when I was carrying my baby. I am supposed to be in the weight category of 57 – 65 kg. But after the birth of my daughter, my weight has always hovered around 72 – 78 kg. I wanted to lose weight and was ready to exercise to any extent, but ignored my diet completely. I would go for running twice or thrice a week, do dumbbell squats, lunges , crunches and sit ups. (I came to know later, that crunches and other forward-bending exercises are the worst type of exercises for my condition).
Very soon, it started interfering with my day-to-day life. Each time I bend over to pick up something from the floor or pick my daughter up, I would be doubly bend with pain. I couldn’t sit or stand for more than several minutes without pain. It had started affecting my quality of life.
I pretty much ignored it and continued to do everything that I was doing before. I continued to exercise and even indulge in running, in spite of the pain and discomfort. Although my condition improved a lot by practicing yoga for back strengthening, on some days I could feel it going back to square one. In addition to a bad back, I had also hurt my right knee with hyper flexion. But my knee problem seemed small when compared to my hurting back. It had worsened to such an extent that during October to the middle of November 2014, I was limping and had to use crutches for walking.
I saw a neurosurgeon, who asked me to get an MRI. He found out that I had SPONDYLOLISTHESIS, a condition in which a vertebra had slid over the vertebra below it in my lower back, like a ‘stress fracture.’ Thus I ended up with three herniated discs at L4,L5 and S1, spondylolisthesis caused by slipped vertebra at L5S1 and spinal stenosis causing severe nerve impingement. It was the reason for my chronic lower back pain, numbness and tingling and sharp radiating pain and spasms in my legs.
I realized that I couldn’t maintain even a semblance of a normal life. I had a hurting back and a bad knee. Since I could only address one issue at a time, I finally decided to opt for immediate spinal fusion surgery. Thus 2015 began with my big decision to go through Transforaminal Lumbar Interbody Fusion Surgery.
I went to my hometown where I found out the best spine surgeon and the best hospital for going through with the surgery. Everything went well as planned. On January 8th, I had my seven hour long lumbar fusion surgery in which a plate was inserted at L5S1 after removing the damaged discs. It was filled with Bone Mass Protein and powdered bone material extracted from my iliac (hip). Four screws and two rods of titanium were ‘welded’ onto my spine to support the plate. The first few days after the surgery, I had to go through the most excruciating pain. It pained even to breathe. I was put on the pain med Percocet 325 mg and the CNS-depressant Pregabalin 75 mg thrice a day. I needed someone to help me out of bed, to take me to bathroom and even wipe my bottom after going to toilet. Now that was something that I wasn’t used to. I was someone who did everything on my own, no matter how worse my condition was. But post-op, my routine needed a long and drastic overhaul. I had my caring husband to help me through it all, in the first few crucial days.
10 days after my surgery, I had my first post-op check up with my surgeon. By then I had started to walk without support and was doing most of the basic things on my own, like getting out of bed, getting into bed, going to the loo, brushing my teeth and so on, which was a major improvement when compared to others who have gone through similar back surgeries and were unable to walk without help even up to one month after surgery . But the nights were rough, with numbness, pins and needles in my legs. Sleeplessness was a major problem. Since I had gone through one of the most ‘brutal’ of orthopaedic surgeries, my surgeon cautioned me about PTSD and depression, which were common among most of his other patients who had undergone similar surgeries. Since I was doing so well, he also asked me to step up my walking because it promotes faster healing.
I was feeling very brave and determined. My doc saw it as a major improvement in my condition post-op and took me off the pain meds and nerve relaxants. On the eleventh day, I even went to a movie with my very supportive husband.
And then that happened.
It was the fourteenth day after my surgery. My husband had to leave, to join back on duty. I was left under the care of my folks, along with my daughter. I was having a migraine attack through out the day which became worse by evening. By nightfall, that along with the leg cramps, was sending me through the roof. If I had a kitchen knife in my hand, I would have chopped off my legs right from the thighs. And to make matters worse, my daughter was having fever, which made her raise fuss and tantrums. She was insisting on sleeping with me, and was crying through out the night. I was in distress and in an awful lot of pain. In the middle of the night I felt the need to pee. I scrambled up from bed feeling achy and wobbling. I remember I had almost reached the toilet. And I totally lost control. I blacked out and had a freaking fall!
The thing about stopping narcotic drugs too soon is that it poses the risk of giving you withdrawal symptoms, in the form of tremors, anxiety attacks and cognitive blurring. That along with the pain post-op is more than enough to give you a nervous breakdown. Here’s the thing: My folks were too old and too exhausted themselves. And the thing about me was that I don’t disturb people, especially those who are sleeping, dead-tired after a whole day’s work. Somehow I feel guilty about it, no matter what bloody bad situation I am in. So, I didn’t ask for help when I needed it the most. My mistake!
As if I haven’t had any problems till then! Nobody will ever understand this scenario unless they have been there themselves. At first it didn’t strike me. After the initial shock, I some how got up and went to bed. In the morning I woke up and noticed this weird sensation to the right side of my incision area. I told myself and others that everything was fine. In a day or so, I started feeling a dull ache from the right side of my lower back towards my legs. Fearing if the jolt from the fall had shaken up the hardware attached inside, I presented this scenario to my surgeon. But after seeing the X-ray, he told me that there was nothing wrong with the hardware attached, that it might be just a case of nerve or muscle inflammation due to the jolt that my already damaged nerves and cut open muscles got when I had fallen. What my surgeon couldn’t find out at that point of time was that I had torn my right Sacroiliac joint with that fall. X-rays or MRIs of lumbar spine doesn’t show SI joint injury. It is a different diagnosis altogether.
The dull ache soon transformed into severe pain and spasms in the night. Ice packs and painkillers could only provide temporary relief. Soon I realized that my whole nervous system had gone haywire. With each passing day, I realized that it was getting difficult for me. Days were tolerable. But the night time leg cramps were getting intense, from discomforting prickly sensation and burning, to violent spasmodic contraction of the muscles as night advanced. That coupled with sleeplessness was driving me crazy. During the nights, I would shake my legs so violently and go berserk. My brain was constantly sending pain signals to the right side of my lower body. I was scared to death and was totally freaking out, but I tried to hide it from everyone around, grinning and bearing the pain.
During this time period, my three and a half year old daughter was having a hard time herself. One, she was away from her dad and was getting frustrated watching TV day-in and day-out and seeing her mother lying flat on her back all the time. Secondly, she didn’t like the nanny whom we had arranged to take care of her. She demanded that her nanny be gone. But that didn’t happen. And hell hath no fury like a fussy toddler scorned. So she transformed herself into a little devil, l’enfant terrible, demanding my attention more than ever and raising shit-storms for me. I was cautioning my little girl every now and then,’be careful’, ‘mama has a bad back’,’ please pick this up for me’ and so on. There were times when, out of sheer frustration of not having anybody to play around, she has pushed me off the edge with her kicking and screaming, jumping over me when I was flat on my back, while I would scream helplessly, not knowing what to do. She would insist me to get up from bed to take her to pee, when all she could do was just go and do it herself. And then there were days when she had become really really angry, I mean ‘hulk’ angry; and became a raging head butt-er, who would catch me off guard while I was inching towards the toilet or trying to walk, ramming hard on my back or groin. And I would see moon and stars for a few minutes before collapsing in bed.
Sometimes she would behave like a super duper good girl and be my little helper. She would become a sweet angel of love and compassion and would hug me, kiss me and hold me tightly saying,’ mama, I love you, I will make your pain go, ‘ and just like a miracle born out of her well-meaning words, my pain would go as she would wipe away my tears. After one and a half months, the nanny left us saying that she has got another job offer in a house were she has to take care of an old lady. According to her, taking care of the old and the weak was any time better than taking care of a little child. My parents are still working. So,they couldn’t provide much help with my kid. But
So, from the beginning of March, I started sending my kid to a pre-school nearby. It was only 15 minutes away from where I lived. Since I wanted to start off with walking according to my surgeon’s suggestion, I decided that I would take her to school and get her back from there everyday. And, though I was weak with all the shit happening in my body, my ADD brain was constantly telling me to get my ass off the couch and start moving around. So I started going for physiotherapy to get my body back to the basics. My surgeon also asked me to move around rather than lying in bed, to reduce muscle atrophy.
After some initial hiccups, as days went on, my little girl began to enjoy going to school. Slowly, I started going out for grocery shopping to help my parents out.
But as days turned into months, I realized that it wasn’t as easy as I had imagined it to be. I was straining myself. And in no time, I was literally forcing myself out of bed every day, when my body was asking me to let it rest. Everyday was an uphill task for me, literally, because I had to walk uphill along with my little girl from home to school. Every morning, I would wake up feeling exhausted feeling as if I had been playing football the previous night. It was really tiring to ready my daughter for school, with her hissing and dillydallying while I coaxed and cajoled her for brushing teeth, going to toilet, having her breakfast and so on. Even the mundane and silly stuff exhausted me. But I didn’t give up, not even a single day.
And my knee gave up on me.
With movement, I started having severe flare up of inflammation and pain in my right knee. After my back, it was time for my knee to give up on me. (The joke is on me.) Now I was in fresh hell. Thus the whole ordeal just kept getting better and better. An MRI showed that I had torn the medial meniscus ligament of my right knee, which overtime, had led to osteoarthritis of the knee. I was put on a two month long medication of steroids and Glucosamine sulphate during April and May. The pain was mind-numbing and more than that, the mental agony was unbearable. Besides pain and chronic fatigue, for the first time in my life, I started getting palpitations on a regular basis.
I was in a tailspin during those months, fighting physical, mental and emotional pain. Nobody around me had an inkling of an idea of what I was going through. And to make matters worse, I was hardwired to turn to food whenever I was in a state of distress. So the pounds came rolling in. It felt as if I was trapped in a crazy hamster wheel of problems.
But I was very determined not to let chronic pain and depression get the better of me. Therefore I kept on with my routine. On weekends, I took my kid to a children’s park so that she would get her play time and my parents would get some peace and quiet at home. My kid had a new routine everyday which was good for her. As for me, I was getting out of the house and moving around which was a good distraction from pain. Some days I would be drained out of my last ounce of energy, but I would feel very happy seeing my little girl tired and going to bed after a day of healthy activities.
During August, I had started experiencing an unusual pain in my left side. By then pain had become part and parcel of my life and so I tried to ignore this new development. I waited till September to go to my surgeon.
On September 15th, when I went in for check-up, I was in for a rude shock. It was so bad, it instantly wiped the grin off my face. My X-ray showed rod breakage to the left side of my hardware implants. My surgeon recommended for emergency surgery to replace the broken rod. My brain was so hardwired for pain that I had dispensed off that pain as something I had to take in my stride, not knowing that if I had waited a little more, I would have ended up with serious nerve damage or even partial paralysis. I had come back from my post-op rest period too quickly mentally and physically, that I injured myself again too fast! I went under the knife again on Sept 17th. This time it took two hours.
It is November now. I am with my husband now. I traveled by flight two weeks after my second surgery, since my surgeon OKed travelling by flight. My body has gone through tremendous ordeal this year, with two surgeries, going under general anaesthesia twice,being cut open and stitched up twice (not counting my c-section, because it pales in comparison to this), umpteen number of MRIs, X-rays,tests,needles, catheter,steroids, pain killers, blood and electrolyte loss. Half of my hair has fallen and I experience frequent palpitations due to low blood pressure. But on a positive note, I am happy that I am not dead yet. I am very much alive and I am able to walk in spite of my ‘disability.’ Yes. It is like an invisible disability.
People can relate to a disability only if they see you bedridden, in a wheelchair or if you are walking with crutches. But people like me don’t have any external signs to show that we need help, for instance, in an airport, to get the luggage from the assembly chain; or in a grocery store, when you have to ask for help to lift something from the floor. etc. People like me have restrictions on bending, lifting weight and straining ourselves too much, because it can lead to rod or screw breakage and revision surgeries, like the one that happened to me. We can’t sit for too long or stand for too long. But externally, there is nothing visible that we can show as reason for our pain, or for seeking help. That is why it is an invisible disability. People like me, struggle to lead normal lives. We can’t overdo anything. But we have to move around to prevent further degeneration of joints and muscle atrophy. But, whatever activities we indulge in, we need to stop at the first sign of pain.
But I don’t want chronic pain or this ‘invisible’ disability to define me. I know I am much more than that.