Irritation, weakness, guilt, despair and frustration owing to dependency is on the emotional palette of a sick person. Why me? – a constant question a person asks themselves. That’s what I experienced once I came back to my senses, realized what was happening to me and what my life could be for good.
Life with dialysis is hard. It has huge impact on your emotional and financial health.
Three dialysis per week translates to 12 hours a week. If you are working, that strikes off one and half working days from your work week. It’s an expensive procedure and many patients do not even earn that much salary in a month. A few patients that I had met would come for dialysis once they had enough money for it, till that time if they survived it was fine or else! It is just not the dialysis. You need to take medications, injections and have multiple tests. It’s a sure shot way to go broke. A lot of patients have to quit their jobs because of dialysis schedules and that puts additional financial pressure.
You are constantly feeling exhausted and weak. Every time you tell someone you are on dialysis; a pitiful look is given to you.
Things were not going good for me. I was going for my dialysis in an ambulance. I would dread going to dialysis and threw tantrums. I was eating an extremely limited diet. I had to consume 38 tablets. I could not drink water. My face and feet were swollen because of steroids and I was losing hair. In addition, some or the other health issue were cropping up. In that one year I managed to contract jaundice, herpes, had to be operated for piles and yes, I constantly had fever. My doctors too were exhausted treating me. During my illness, I think I have consulted each and every doctor on the hospital panel except a pediatrician.
All this was taking a toll on me, I was feeling guilty and helpless all the time. Guilty because my entire family’s life got disrupted and now everything had to be planned around my schedule and comfort. My sister and her family had to keep their life on hold to be with me and my daughter had to be on her own most of the time. My husband would constantly check on me during his busy schedule. A relaxing day at home had become a luxury. I was consumed with guilt for not being able to be there for them. I felt like a burden. In the night when the lights went off, I would weep silently. Sleep eluded me in the night. I would sleep all day instead; it was my way of running away from reality.
There is a lot of talk going around these days on mental health and suicides. Having to dealt with a lot emotionally, I totally get why people take their life. I can talk about depression from a sick person’s point of view. I believe more than the pain; it is the guilt that drives them to depression and some of them eventually take their life. I would not judge a sick person if they take their life or stop treatment. Even if your well-wishers say they will be always there if you need them, the reality is, most of them are not equipped to deal with your emotions and may not be always available at the point of time you want them to.
Here, I pat my back for not giving up. If I wanted to, I could’ve taken my life easily. I had access to the most potent medicines and with already a weak body, it was the easiest thing to do. I would be lying if I said it never crossed my mind. However, the stronger version of me warded off those thoughts. I may not look the part, but I am mentally a very strong person.
There comes a point in everyone’s life when you know this is what it is! Accept it and move on. Build a tweaked version of your life with new realities. I decided to take the life head on and first thing I wanted to get rid of was travelling in an ambulance.
I still remember my first session with my physiotherapist Priya. She asked me “What do you want to achieve? What Is your goal?” I grandiosely had announced to her “I want to start walking in 10 days.” In reality It took me a good six months to actually achieve that and that too with a cane!
Relearning to walk was quite an adventure. I had lost all muscle mass in my body and my strength and balance were zero. I was extremely scared to stand even with support. I have had a fall or two in the process. Priya is a hard task master and never treated me with kid gloves. She always pushed me to try harder along with Mamata and Apeksha. Apeksha could lift me up if I fell and that was such a comfort for me. Till I got comfortable and strong enough, I never ever ventured out without Apeksha.
The process Priya laid out to me was to stand up with the help of the walker or someone, sit on the wheelchair, go to the car, stand with my back to the car and sit and slide onto the car seat. Then, someone would help me to put my feet in the car. We practiced at the edge of the bed at home and we decided a date when we would actually do it in the car. 6th April 2018, exactly a month after I was released from the hospital – what a day it turned out to be!
Mamata opened the car door and I stood up with help of Apeksha. I managed to sit in the car and slid back, Mamata pulled me back from behind to ensure I was sitting properly in the car and Apeksha held my leg and put it the car. When I finally settled in my seat, what joyous moment it was! I shed a copious amount of tears – tears of happiness. It was emotional for all of us. I was not in an ambulance for a change. It was a drive I will always remember! It certainly was a Kodak moment and we clicked lots of pictures. I have attached one with this blog. This entire exercise was kept a secret from Dinesh. When we sent him a picture, he was stumped. From that day onwards, I went everywhere in my car listening to my music.
I consider this a major milestone in my rehabilitation. It gave me hope and I started to believe that things can improve, and I worked hard on it!