“I had it really well done before I got sick. After my divorce I bought a nice house for me and my daughter. I liked to go out, do fun things with my girlfriends and found a new love. I worked as a house painter hard and I liked to have fun with my colleagues.The buzz, working at different locations all the time, I miss that so much.
Just after the birth of my daughter, now seven years ago, the first complaints started. I was experiencing nerve pain in my legs. The doctor blames it on stress and fatigue. But my complaints got worse, my leg sometimes fell out when running. As if I had a foot drop and ‘kinked’ through my leg. Again I knocked on the door of the doctor, and again I felt that I was not taken seriously. My back and hands hurt at work, but I didn’t want to call in sick and tried to ignore the pain and discomfort.”
“I had been having health problems for years now. When I went to the doctor for the umpteenth time, I was finally sent to the hospital for an MRI. The suspicion was that I had a hernia. The MRI scan of my back showed nothing to but the neurologist saw a spot on my neck.
A new scan of my neck and head was made and while I waited for the results I went on vacation for a week. A day before I flew back I received a phone call that I had to report to the hospital after the weekend. A nasty feeling came over me.”
Pain and paracetamol
“That Monday, now six months ago, I was in the consulting room with the neurologist. He was brief: ‘You have MS.’ Bam A slap in the face An epidural was done for extra testing, there was still a very small chance that it was something else.
Secretly I kept hope, but deep down I knew it wasn’t right. I was in so much pain and was on paracetamol. The puncture confirmed the previous bad news. No surprise, but I was still shocked. I fell silent. The following weeks came the realization and with it the tears.”
“I can never accept my illness, every day is another nasty confrontation. I can’t even take my daughter to school on foot. I hate that I can’t do something so simple anymore, it feels like I’m failing as a mother.
I do everything by car, I now also have a disabled parking card. Terrible, but walking more than five minutes is no longer possible for me. I have more and more failure symptoms, I never know when my left leg suddenly refuses to work and starts dragging.”
Very aggressive form of MS
“I also have the misfortune that I have PPMS, a very aggressive form of MS. This makes me deteriorate rapidly. I am tired all day long and have a constant headache. Every week someone from home care now comes to clean me. I also think that’s terrible, but I can’t make it alone anymore.
I find it difficult to ask for help. I was always independent, worked full time and was mothering a lot because my daughter lives with me for the most part. Now I am housebound. I’m on sick leave and fear I’ll never get out of it. The contrast with my former life could not be greater.”
“MS is a capricious disease, you don’t know how it will progress. Every day is different. That sometimes leads to misunderstanding: people see me happily drinking somewhere and don’t understand that I’m really sick. “Oh, it’s not too bad with Margot “, they say when they see me in the city. They don’t see the price I pay for this, that I lie flat all day after an appointment or dinner. That sometimes makes my illness very lonely, despite all the support I receive from my dear partner and girlfriends.”
Stamceltherapie
“Unfortunately, MS cannot be cured. There are medicines that should keep the disease calm, but they had the opposite effect on me. I reacted very violently to it and it made me sick. Now I have not had any medicines for a long time, only many painkillers. But I am an optimistic person who does not give in easily. Immediately after my diagnosis, I turned up the internet and read about stem cell therapy, a treatment that is only offered abroad. In many countries, this therapy has been reimbursed for much longer because good results are achieved.
Since December last year, the treatment is finally also reimbursed in the Netherlands, but unfortunately only for a very selective group of MS patients. Not for PPMS, the form I have. This treatment halts MS, but the damage already done by MS is irreversible. It is therefore important that I start stem cell therapy as soon as possible. Small problem: the treatment in the clinic in Mexico plus all expenses has a price tag of sixty-five thousand euros, an amount that unfortunately I do not have on my account.”
“To get this huge amount together, a few friends of mine are one crowdfunding campaign started. So sweet of them, but I had to cross a threshold. I felt shame, because you are ‘begging’ for money anyway. Suddenly I was online and everyone had an opinion about me. I was no longer ‘just Margot’, but ‘Margot with MS’. But I’m going for it.
This is my last chance not to end up in a wheelchair, my greatest fear. We have now almost collected the required amount. During stem cell therapy I receive the same heavy chemotherapy as a leukemia patient. So I will go bald too. Recently I already picked out a wig, that was a bit of a swallow.”
Never the old one again
“In total I will have to stay in Mexico for a month without my daughter. That will be very tough, just like my recovery period, but I’m doing it for her. She gives me the primal strength I need. The chance that the MS will be flattened by this treatment is very big, there is even a chance for a little bit of recovery, so for me this is the only path I want to take.
I will never be completely the old one again, and that realization is heavy. I am in a grieving process where I have to say goodbye to my old, busy life. I miss going for a walk in the woods with my boyfriend, buying clothes in the city with my daughter. To simply be able to use my legs without thinking about it. I really don’t expect to be able to fully participate in everything again after the stem cell therapy, but it would be great if I had fewer complaints. I do everything for that.”
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