Hello world, it’s me, the hermit. The sleepless one as it’s that time again.
10 days and counting, super annoying! Especially as I deal with dizziness anyway and sleep deprivation does not help :S I wish I could sleep a couple of hours but my brain doesn’t…as soon as the lights are off and it’s silent, my brain starts working at full capacity.
Too many thoughts and worries, I get so sad during the night, words can’t describe. I am thinking about the future a lot, in all colors, from bright and shiny with lots of plans to pitch black and the worst case scenarios.
It could go any direction any day, that is the crazy thing. I could be fine but could also be a bedridden patient in no time.
Imagine you go to bed, feeling fine and the next morning you wake up disabled. You can’t move your legs or half of your body.You can’t speak properly anymore or are even blind. Or everything at once. No doctor can tell you if your nerves recover or if it will stay that way. There is no cure for MS. It progresses each and every day. Every second.
In theory I could be paralyzed by the time I finish this entry and that freaks me out. I wish I could get a daily MRI to calm down.
This thought is killing me, I just don’t know what will happen next but the control freak inside of me wants to be prepared. As a result, I am thinking non stop about all kind of solutions. Really everything, from participating at the Paralympics up to an “exit” plan for the worst case. Do not worry, am still positive and hopeful but if you know me, you know I always have a plan A – Z ready for any kind of situation. ( Next thought – Paralympics. Even there MS is a tricky one as you never know when your arm or leg won’t work or any other symptom comes in the way… )
Every day is a borderline day without sleep – one minute I am fine and happy and the next I burst out in tears. Can’t focus on anything, tried to watch a movie a few times and it doesn’t work. Not even a tv series…and I start thinking again.
Why does a brain not come with an on/ off switch?
I feel as if I am completely out of synch with the world. In the past I used to be too fast for the world, doing 100 things at the same time, travelled the world, love life and lived it to the fullest.
Here I am, 4 months after my diagnosis and am far away from my old self. My self confidence is gone and because of that I feel less independent. My right hand is back to very limited use and I sometimes ( move heavy stuff, cutting hard veggies…) need help because of it. Cooking and baking with one hand – adrenalin rush. I wouldn’t even dare to take a train to the next city at the moment, not alone. Me! Can you imagine? The world is too fast for me at the moment and being outside is super exhausting for me. It’s loud, crowded and living in the bike city Amsterdam is another danger as the bikes appear literally out of nowhere.
A good day today means not being completely exhausted after taking a shower and getting dressed in the morning, no extreme dizziness and no headaches.
Maybe we are all born with a certain energy level and believe me, I have used that the past years 🙂 Je ne regrette rien, would do almost everything exactly the same and am thankful that I’ve seen many of the most beautiful places and for each experience I made. I have no regrets and as I am a travel junkie, I am glad I visited most remote and hot places already as I am not sure if I can and want to in the future. Time to explore Europe.
It’s just odd to witness life from the outside as mine is still on hold. Engagements, weddings, pregnancy – so much has happened for some of my very very best friends this summer ( and I am so happy for my girls and can’t wait to join all of the upcoming events 🙂 ) .
I had no summer and spent most of it in hospitals and rehab, instead of checking out holiday destinations on the web I inform myself about a Dignitas membership, just in case. This is me, always prepared.
Sorry, life sucks at the moment, still can’t believe this is happening to me and this entry is not positive and a bit all over the place, just like my thoughts. I also start feeling like a coward as I couldn’t join several birthdays and had to cancel visits 😦
I am just a sad, confused and very tired lady in sweatpants this week.
Sweatpants – I think it’s time for an intervention my friends as I just ordered more or less the entire new VS PINK sweatpants and sweatshirts collection 🙂
One last and finally positive thing – we are off to Berlin tomorrow for a long weekend! My first trip since May and time to practice self confidence and find out about my limits. I hope I will feel fine and not stay in the hotel all day…No, I decide to have a great time, laugh a lot, try to go shopping ( no sweatpants, I promise ) and enjoy some quality time with my boyfriend. Please cross your fingers, I so need a MS break and distraction.
xoxo, have a nice weekend!