“How can you even walk with numb feet?!”
My name is Marie. I am 22, born in Bavaria, Germany and I was diagnosed with RRMS only a month ago. To be honest, it almost was a relief to finally know what’s been wrong with me all the time.
It started about a year ago in spring – I was working three jobs at a time: Tattoo studio, retirement home and youth hostel – when my feet went numb for no reason. It’s been an eventful month already: Moved to a new city, cancelled university, found myself the most unbelievable, kindest, caring boyfriend, who was totally okay with me being pretty much always surrounded by people. But still, the numbness that started in my toes slowly went creeping up to my thighs. When I finally dragged myself to hospital, all I got was being pushed from A to B, from B to C and back to A again, as nobody could really figure out what was wrong with me. Acually, when my boyfriend brought me to the neurological clinic, one of the nurses blurted out “What – you say your feet are numb? Well how can you even stand here and walk around if that’s so?” After a lumbar puncture they sent me home, doctors words were: “Well if it doesn’t hurt and it does not seriously affect you, I guess you’ll have to live with it.”
So I lived with it. Half-decent. I went on a camping trip with my family, quit the retirement-home job to have more time with my boyfriend, then quit the tattoo studio job after an argument with my “boss”. Moved in with my boyfriend and did all the happy things one should do in summer. And after a while, my legs and toes came back.
But I felt that I changed. After an 8 hour shift at the youth hostel, I suddenly couldn’t find the energy to meet up with my friends anymore. I started sleeping very long. In fact, I could sleep for 14 hours through without waking up. I caught myself walking senselessly around the flat, feeling trapped, feeling numb, feeling tired but awake, feeling depressed for no reason. It felt like sitting inside a bubble, muffled sounds from outside that I couldn’t quite make out. People even started telling me that I’ve changed. I should go work out, find a hobby, maybe get a dog, stop thinking too much, find a new job. And they told me I should stop imagining that I might be sick. So I found a new job and started as an apprentice in a big hotel. We got a dog, started working at a dog shelter and went out hiking alot. Everything was fine, no thought of strange numbness, or a weird illness, though the inexplicable depression often snuck up on me. I had trouble with a neuritis in my elbow, felt ants on my arms, tickles in my face – nothing that couldn’t be cured by a dietary change and some yoga, as my doc said.
Then my fingers went numb. First just the tips, then the fingers, until both of my hands were useless down to my wrists. So much for working in a hotel, carrying plates and trays full of glasses…
Back to the doctor’s it was – again. Another one, this time. And all of a sudden, it all went down the drain pretty fast: Blood tests, MRI finding 6 small lesions, one active, diagnosis: multiple sclerosis.
WHAM. Like you get hit by a truck at full speed. Everything gets blurry, days start passing by with smiling nurses, needles, transfusions, cortisone, pain, more needles, more transfusions, more smiling nurses and doctors and explanations and well-meant advice for therapy, scared family, crying sister, worried boyfriend trying to hide his feelings, phonecalls from mum, dad, aunt, other aunt, sister, cousin, gay cousin….
Waking up from the state of shock took me 13 days. Almost 2 weeks of feeling like being underwater. I broke the surface screaming, yelling, crying – for almost two hours. As my prognosis was still unclear, I quietly told my boyfriend that I would rather kill myself than become a nursing case and ruin his life. He reprimanded me by saying “that’s bullshit, honey.” And of course he was right. After a while, I kind of felt grateful for the diagnosis. After all, I got declared a lunatic hypochondriac for over a year.
Do I exaggerate? Do I sound egoistic? I guess so. By now, I know that there are a lot worse cases of MS. People struggling far more than me. I’m back on using my hands normally again. It all works, more or less – as you can see, I am able to type! 😉 I have my whole family to support me and – most of all – the best someone I could wish for, as he was with me all the time, and still is here, and still stubbornly insists on me marrying him some day. I still can work in my job and finish my apprenticeship. Also, I live in Germany, and though I hated my homecountry ever since, I am happy about the health insurance thing that pays my injections.
So now, on this cold rainy day in February, as I spent most of my day off wandering around the flat and trying to keep my head together, I am glad that I finally found the courage to write this story, my story – since I’ve read so many of yours. I am deeply impressed by all of your lives. Your struggles. Your fights. And your unbelievable ability to always find some piece of happiness in everything that you have and do. Cheers!