I have physical pain, but my life consists of watching and I find that the most painful

The last thing I want is for my words to form a lament that bores and people don't want to read

So this version is already the sixth or even seventh version since I was asked to write something about my situation. It's true that I'm a perfectionist and very critical of myself. That's partly why I ended up in this situation. I am 32 years old and have three children. Lynn who is 10, Noah who is 8, and Nina who is 2 years old. My life has always been very intense. I never expected this to happen to me. Maybe it's naive to think that not much more would happen to me after everything that has already happened, but that's also who I am. Last month I was officially declared 100% unfit to work.

Four years ago, I spent two days in bed with a severe flu. I had to work that Saturday because I was in charge of the store. I managed a jeans store and worked full-time. I got up and immediately fainted from a sharp pain in my back. My husband thought it was irresponsible to go to work, but I went anyway. 'Work hard and don't complain' was my motto. When there was no one in the store, I lay on the floor behind a little wall near the fitting rooms. I read on the internet that you should wait six weeks before going to the doctor for back problems, because often it would be over by then. So after six weeks, I was at my doctor's and he said: 'You have a hernia, ma'am.' 'Well okay,' I thought. 'Fine, just take it easy at work.' But calling in sick... No way, I didn't do that. With quite a few painkillers, I carried on, because I wanted to secure that permanent contract later on. At home with the kids, I was breaking from the pain and couldn't do anything anymore.

At one point

I went to the physiotherapist, but after three months with no improvement, I was referred for an MRI. My neurologist said that something was visible, but that it was impossible for me to have any complaints from it. He instructed me to undergo 10 weeks of manual therapy and then to come back if the pain had not lessened. So I obediently did that. I ended up coming home from that therapy with almost more complaints than before. Eventually, she also said: "You definitely have a hernia and you need to go back to the neurologist. I can't do anything more for you." So, after some long waiting periods, I was once again obediently sitting in the hospital waiting room. The neurologist said: "Madam, it is NOT a hernia. I cannot help you. I am referring you to the orthopedist and we will see if you can go to the pain clinic."

Meanwhile, my husband and I were very eager to have a third child. Since the neurologist emphatically stated it was not a hernia and that it would improve quickly, we went for it. My husband is 11 years older and he didn't want to wait any longer considering his age. Meanwhile, my work was also becoming very impatient. “Does she have a hernia or not? Everyone has back pain,” they must have thought. I continued to work and deliver results, so I didn't understand their dissatisfaction and almost started working even harder. Until my manager intervened when I could barely stand or sit and gave me the choice to call in sick for one day or reduce my contract by one day, so I wouldn't have to deal with the occupational health physician. And I chose the latter.

When I was six weeks pregnant

almost three months later, I was sitting with the orthopedist looking at the results of the third MRI scan. A huge hernia was visible. He didn't want to do anything because of my pregnancy, but he could arrange for me to get injections at the pain clinic to numb it a bit. So I went for that. My contract was due to expire in May that year, so I didn't call in sick. I had to make it work! In February, one morning I woke up with even more severe pain and discovered that I could no longer use my left forefoot. It was (temporarily) paralyzed. That was the last straw. I called in sick from that moment on. And of course, I did not get that permanent contract.

After giving birth, I had to return to the hospital and to my surprise, I did not see a neurologist but a physician assistant instead. She nonchalantly told me that the symptoms I was experiencing (radiating pain in both legs) were not possible and that I should see a psychologist. I mentioned that I was already seeing one due to the childbirth and my childhood traumas. I became so angry that I insisted on an appointment with a neurosurgeon (a different one). I needed help. This had been going on for almost two years. I couldn't take it anymore. That's how I met a kind woman who finally took me seriously. By then it was spring 2018 (darn waiting times), and she said she would discuss my case with a team from Tilburg to see if they would admit me, as it was no longer a hernia. At least it wasn't pressing on the nerve in my legs. Yet, I was still in pain. Good news: I was accepted in Tilburg and when I sat with that doctor, a weight was lifted off my shoulders. I wasn't crazy. I wasn't exaggerating. My pain was real. The intervertebral disc containing the liquid substance had completely torn. Only when the liquid comes out does it cause a hernia. In my case, the disc itself was pressing on the nerves in both legs with its ends. It had to be removed. That finally happened on December 7, 2018. A severe abdominal surgery with many risks. There were three possible outcomes: it could get better, stay the same, or get worse. We went for it! On December 7, 2018, I had the surgery. At home, I was not allowed to do anything. Not lift anything heavier than a cup of coffee. Not bend over. Not sit for more than 10 minutes. And that for six to eight weeks. A hospital bed was set up downstairs and people took turns looking after our youngest girl, just one year old. During that period, things only got worse. Upon returning to the doctor, he ordered several tests. Multiple CT scans and MRIs. I have a calcified hernia that cannot be removed. It will regularly press on the nerves in the legs. There is an 80% chance of a new hernia and the intervertebral disc above is so damaged that it will also be removed over time. My life consists of pain. I take a high dose of pain medication daily. This is because I especially want to take care of my children myself. So that they look back later and say: 'Despite everything, mom was always there.' And as I type this, I become emotional. For me, this was not a given in the past. My mother has borderline personality disorder. And she refuses to get help for it. When it was at its worst, she would lie in bed. She promised everything, but nothing happened. This is of course just a very brief version, but just to clarify why I feel this way, and why I keep standing up, no matter how much pain there is in my body. I refuse to make pain the number one thing in my life. And of course, it causes frustrations or anger from me. Sometimes I am too angry with the children. Then I react out of pain. Sometimes I tell my husband: 'When the children are grown up, life doesn't have to go on for me.' I even told the doctor: 'Cut my entire spine in half. Give me a spinal cord injury. Anything is better than this pain.' Sometimes the pain is so intense, everything is black. When I can't even eat dinner normally because I can't sit anymore. When I don't want to get up simply because it drains energy. Because you face a lack of understanding. People who don't understand the fatigue. But of course, I then put things into perspective again. I am still here. I can still take care of my children and I am so grateful for that.

Over the past four years that this has been going on

I've been through deep valleys. And still. Not seeing friends anymore because I can't guarantee that I'll show up for an appointment is painful. I don't know how I'll feel in two weeks. How much pain will I be in? Everything I do needs balance. Do I want to go to the indoor playground tomorrow? Then I know I have to lie flat for a week if I join in. Or going to the city? Then I have to keep calm beforehand and count on a few days of rest afterwards. But now that I'm home full-time with the kids, I see it as a beautiful advantage in this misery. I get to be there for them. Motherhood has become more raw because of my pain. It's all about one thing: loving them. How often we used to go out, discover things, visit different places in one day. That's not possible anymore. On a good day, we go for lunch in the village around the corner. Something as simple as going to the playground and pushing your child on the swing costs me so much that I have to lie down for the rest of the day. When my children go to the playground, zoo, or something similar and my husband accompanies them, I often stay behind, sitting on a bench. I have crutches for when my legs hurt too much. But I'm terribly ashamed to use them. You get labeled. We're even slowly starting to think about a wheelchair. And even if I push it myself, if I can sit down when needed and join my family, then the shame is worth it. And I know that shame is a strange emotion and certainly not necessary in this case, but what can you do? I want to be strong, appear strong. A process I have to go through and learn.

My life consists of watching from the sidelines

That's what I find most painful. I often try not to involve people outside our family too much. Not to get emotional when they ask how things are going. I don't really have an answer to that question. On one hand, I prefer it if they don't ask, but when I feel lonely, it would actually be very nice. My world with my children has become very small. Because I can't do much anymore, I am completely dependent on the children. We play games, watch movies, sometimes have a coffee on the terrace, I read endlessly to them and talk a lot with them, really talk. My goals in life have changed. They are small, but at the same time oh so big. My goal is for my children to look back on their childhood with fond emotions. They don't need to achieve anything special, just to be happy. Due to the situation, they have learned to have a lot of empathy, to care for others, to sometimes put their own needs aside for someone else. Even though I would have preferred not to teach them these lessons in this way. My heart breaks when my eldest daughter comes home and tells the teacher she has to go home to help mom and can't stay. Something I would never tell her, but she feels it herself. What I have learned is that children are flexible and resilient, but also that they often don't want to express their true feelings because they are afraid of how it will affect the parent. I need to learn to prioritize, to really appreciate the small things, and to be happy without having to do anything for it.

DORIEN