I’m Marlize and had my first relapse in May 2016 I was 30 at that time. The symptoms I had when I was diagnosed were pins and needles in my hands and feet as well as the MS hug, the symptoms got worse when I think back at that time. I was in survival mode and when the doctors asked me if it’s getting worse I wasn’t sure I just knew something was wrong with me, this is not normal. Thanks to my GP that acted fast and did blood tests that did not give any answers he tested my reflexes and realised it was brisk and revered me for more tests. I was diagnosed and hospitalized early June 2016 for IV steroids to stop the attack. It was a shock when I got the news after the MRI, I remember coming out of the MRI and the doctor asked me to come and sit next to him in the cold hallway in front of the MRI room. I could sense something was really wrong in the tone of his voice. I did not expect this s, I never heard of it and no one in my close family has or had it. He revered me to a neurologist; I had an appointment with her the next day. He asked me if I have any questions after he brock the news. How are you supposed to ask questions if you don’t know anything except what he just told you?
Everything happened so fast, I had the MRI late afternoon and when he brock the news he said my neurologist he and my mom discussed and made and appointment while I was still in the MRI is likely to admit me in hospital the next day. Seeing we don’t life close I need to come prepared with a bag for probably 3 days. Well the next 15 days was bad, the IV steroids had a lot of side effects on me. When my neurologist told me you might have side effects form the medications I was not thinking it’s going to be that bad. She gave me something for the usual side effects, just my luck I had some of the not so common side effects. The nausea was the worst and it’s not one of the common side effects. Everyone told me you are going to pick up weight, I lost weight. I wish I had someone to talk to and ask if what I’m going through is normal. Later on I found that it’s normal and it gets better, even though at that time you don’t think it is.
I was lucky to have a supportive family and friend network that made it easier to cope with everything. When I look back I realise that everything was hard on me but it was just as hard on them. They want to help but didn’t know how and the sad part is if they ask you, you can’t tell them what to do for you seeing you don’t know yourself what is going to make you feel better at that moment when you have a bad day or struggle with a new symptom you have not yet encountered before. It’s so true you really see who the true friends and family are you can depend on. They stand by you all the way, it’s not just when you get diagnosed it’s the months and years after you need more support seeing it is a unpredictable disease. The pins and needles in my feet and the MS hug were gone after the treatment but the nerves in my neck that got attacked have an impact on my hands, as you all know if you nerves can’t heal themselves at to the full extend that they were. If I have a bad day or with sudden temperature changes especially heat the pins and needles in my hands are back, not as bad as with the relapse. I really struggle with fatigue and it’s like a on off switch there is no warning one moment I’m fine the next I’m not. It took time to get use to and I learned to plan my days very well. I had to make a lot of life changes to be able to cope with the fatigue, which was not always easy.
Before my relapse I did the Parkrun, cycled 10km easily after work to stay fit and did mountain bike races of 25/30km and I was fine afterwards. Now if I do the Parkrun it takes me 2 days to recover from fatigue. I tried to cycle but when I get to 5km the fatigue kicks in and my hands gets pins and needles, when my muscles cool down they are in really bad spasms and takes 2 days to recover from the fatigue and sometimes needed a physiotherapy session to relief the spasms. I have scoliosis as well so luckily I had a good relationship with my physiotherapist who helped me after my MS diagnoses to make changes in my life. With the help of my physiotherapist and a biokineticist they worked out a new program for me and I love it. I do pilates 2 times a week with my biokineticist and she did research and realised that rebounding (trampoline) might be an effective way to do cardio and it’s not as hard on your body. I can do 45min at the same intensity as the Parkrun and feel fine afterwards. The health benefits of rebounding are really amazing. I started of just doing a 5 minute health bounce and worked it up. My advice will be getting a good medical team to help and assist you in this regard to get started.
My MS was confirmed 6 months later, February 2017. I had to choose if I wanted to start disease modifying treatment or wait and see. I decided to wait and see and my neurologist supported my decided to wait with disease modifying treatment at the moment, but we have to monitor regularly. My old lesions are not active any more, but I have new ones in the old one’s place (I did not have any symptoms with ne new lesions; we picked it up in the MRI). My neck nerves started to heal but flared up again on the last MRI, not as bad as with the relapse.
It is a daily struggle; I don’t plan ahead and make commitments anymore seeing that I’m not sure how I’m going to feel when I get up in the morning. I do the best I can each day and still try to life my life as normally possible. The bad thing about this disease is you don’t look sick but you are and the world can’t see it, you need to inform them so that the people around you can assist you where needed.
I still work full time and it’s not always easy. But having a good support network, professionally and socially makes a big difference. Especially if you can compare your symptoms to some of the others, I made good friends along the way which I’m really grateful for to share my story and advice and getting some good advice back in the MS community.
My advices to anyone living with MS never ever give up. If you can’t do it today, try tomorrow and if it doesn’t work change your plan and find something new and inform the people around you on what you need, if you don’t know what they can do for you tell them “I don’t know how to help myself, so I don’t know how to guide you to help me”.
For the social network don’t be scared to ask how the person with MS is doing, if you ask they will let you. We don’t talk about it we just go on like nothing is wrong, we make the best of what we can each day. Even if we don’t look sick it does not mean we are coping with everyday life.
I really hope my story can help someone out there to make them feel they are not alone and speak to the people around you that is the best you can do for yourself and them.